It is really difficult to think back to how unhappy and sad I became when I found out that I had (and still have!) Multiple Sclerosis.
BTW, this is a long one. Make sure you go do a wee before you sit and read it.
All of those 'what ifs' constantly entered my train of thought. It felt never ending. And it did not matter what people said to me, no matter how much they cared and loved me, my thoughts felt so concrete. They weren't going anywhere.
I would have these horrible thoughts in my head. Scenarios of the worst case. Where did these thoughts come from? Where they there before? How did I think them up all alone? It would have been a great time to try my luck at writing a horror script for Hollywood.
I think I am unsure to say, confidently, that I was a happy person before MS. And I am not sure where I am going with this, but I think a lot of my close friends would agree, that I am a very pessimistic person. It takes a lot to make me see positives. My philosophy was to prepare for the worst, and you'll never be disappointed. Makes sense, no? Before I saw the Neuro in D-Town after my first MRI, I thought the C word. It wasn't the C word, so it wasn't so disappointing to hear M and S. SEE! It makes sense to think this way. You must agree? No? Yes? You see my logic though?
What I am saying is, me being sad wasn't really something that would be considered out of the ordinary.
So when I was around people over the Christmas when M was not in the country, I had plenty of reasons to be sad. But half a year later, when M did arrive home safe, I was still sad.
I was submerged in a thick pool of 'what ifs' that kept pouring in from somewhere, and I was slowly sinking. I was full of fear. Seriously man. Everyday. Thoughts of 'what ifs'. Yuk. It was horrid. And I couldn't express how I was feeling. I just wanted to cry in a dark, cold room. I could feel my family getting frustrated for my unhappy faces and attitude. But it was how it was, my life was doomed. I didn't care that other people were upset with me. I'll just do my own fucking thing, right? And if you don't like it then meh, followed by a teenage shrug of the shoulders.
I didn't want to become a burden when I eventually find my way into a wheelchair. I didn't want to even think about having a child. I never even wanted children until I met M, then I changed my mind, but now I wanted to go back to how I felt before M, no kids. But I couldn't do that to M. We had already discussed the kid thing and we were so keen. Now I was not keen. What if I get too sick and can't care for my own child? What if I have to rely on M to do everything, and my family and his family, and there I am witnessing it all, not being able to help, because I am too unwell. What a useless mother I would make.
What if I can't work one day? Will M resent me for that? I just stay at home. Looking perfectly fine, but I can't walk, or I am too tired to even make a cup of tea.
What if I have to stop driving?
What if I can't have sex anymore?
What if everyone is just being nice to me just because I am sick? No I am not sick, sorry. Sick implies getting better! What if people are only nice to me because they pity me? Oh poor Sascha. She was such a great teacher. She painted some fantastic artworks in her time and she used to dance on the dance floor like a crazy kid. She once loved the hot weather and the beach. Sascha really enjoyed stayed out until 5am partying away.
What if I start to get spasms in my legs and I look like a freak? What if that happens at the same time I get Optic Neuritis in my right eye? A half-blind spastic. Nice.
What if I stop M from doing the things he wants to do in life? No sorry love, I can't do a hiking tour of the Himalayas - where will I put my medication? What if i get tired?
Why would M want to stay with me if all of this stuff is going to happen? And my family would only feel obliged, because they are my family. It's an unwritten law. What if they need to sell their house to help pay for something for me like some motorised mobility device?
If all this stuff is going to happen to me, then what's the point in hanging around? Why drag everyone around me into this horrible life I was going to have? Let me pull you into this deep chasm, and be sure to smash your body on every sharp, unbeautiful surface as we fall. I know 'unbeautiful' is not a word.
During 2011, I saw two female psychologists.
The first was a real doozie. My age, blondie/red hair, glasses, preggas. The first session is all about getting to know me I suppose. My background, things that have happened and are happening in my life. Okay, yeah cool. But next session can we use the time a little better so I am not paying you hundreds of dollars just so I can talk about myself? Yeah, cheers thanks.
The following sessions were based around meditation and shit. Yes. Sorry. It was shit. I understand that meditation is beneficial, but sorry, not enough to get me out of this rut lady. So I ended up cancelling my other sessions.
The second one was much better. A bit of CBT. Cognitive behavioural therapy. Sounds so serious huh? Well it was. In a way. I got some homework that didn't involve 'breathing'. Reading stuff and what not. Anyway, it was good. And some of it was useful. But in the later sessions (I think I had about 7 or so all up) we kept going over the same things and it was then that she suggested I speak to my GP about some medication for my anxiety. She said that I was obsessively worrying. I thought that was pretty accurate.
That was the last session with her. She said we had one more in January if I wanted it. But I might be okay after the holidays. HANG ON. You have just told me something that we could probably work on, but now you don't want to pencil me in for one more session? Wtf?
No worries. I am not ashamed. But man, it was difficult getting some sleeping pills for my Sad Sundays a few months prior, so I am not sure how I am going to go with some anti-anxiety meds.
I saw the GP. She put me on Beta-Blockers. What a waste of time. I felt more anxious about what they were doing to me, and that was just another thing to add to my worry list. "Do not stop them suddenly". Okay doc, thanks for giving me visions of having a heart attack or some other related heart emergency. She was also hesitant on the dosage. "One pill per day...no, no, start with half". Jesus fucking christ. She is a nice doc though. She will put her hand on my shoulder or arm for a bit of comfort. Maybe all my reactions were related to my anxiety.
For a few weeks, I took these stupid red coated things. My heart rate slowed down. Just as long as it doesn't stop, I will be okay. Add that to the list!
I got sick of them. They were not helping. So before leaving D-Town for Sydney, I booked in with the lovely Dr B. Legend.
I saw Dr B. I spoke to him about the GP in D-Town and the psych.
He suggested I start on an anti-depressant called Pristiq. He explained to me, with illustrations and all, about anxiety and depression. He clearly explained to me what this drug does. He explained how I might feel when I first take them, and how I might feel if I miss a dose. He explained that I should join the MS Society in NT to try and seek out a psychologist who I can talk to about my diagnosis - not just have a nice chat about life and stuff and things. I explained that the MS Society is NT and SA combined, and that it is utter rubbish.
Okay, so time for a new drug...
Sunday, 26 February 2012
Friday, 24 February 2012
MS is a blessing? Double you, tea, eff! (a small rant)
So I just finished this great book by Marlo Donato Parmelee, called 'Awkward Bitch:My life with MS'. If you have a kindle, buy it! It's a few bucks. It is a true story about the author's journey to discovering that she had MS and how she dealt with it. There were definitely parts of the book that I could relate to, and I would LOL at times. Her MS is different to mine and from what I read, I am extremely lucky (so far - knock on wood x 3). It was very funny and is probably the best book I have read in a long time.
Okay, let's be honest here. I hate reading. I like books with pictures. BUT I have read a few in my time, and I really struggled to put this one down. I bought it and started it last year, and kind of forgot about it over Christmas and all that crap. Then once I started my blog, I picked it back up, well I picked up my kindle and turned it on.
ANYWAY, this is not First Tuesday Book Club!
I wanted to try and find similar books. MS stories that weren't all doom and gloom, woe is me, the end is nigh, blah. I really enjoyed the humour of 'Awkward Bitch'. Surely there are other reads like it! Even stories of individuals with other chronic illnesses! I found comfort in knowing that others in a similar situation shared the same thoughts and frustrations. Anyway...as I was saying, surely there are other reads like this one...
Think again.
I sat in bed, so very disappointed that I had finished the book. So I searched for others on my kindle.
There was all the usual crap about diet and all about being healthy, books for medical professionals, all sciencey and shit etc.
I then began noticing some book titles that really troubled me. I found one titled, 'Blessed With MS: How God Used Multiple Sclerosis to Save My Life' and another, 'Our Blessing...Multiple Sclerosis'.
It really fucked me off. Am I being completely judgemental about other people's stories of MS? Perhaps. But c'mon! (Sorry if you are offended by my reaction, but I just wonder how many vulnerable people these books have sucked in. It really doesn't wash well with me, obviously)
Having MS is NOT a blessing.
The end.
Okay, let's be honest here. I hate reading. I like books with pictures. BUT I have read a few in my time, and I really struggled to put this one down. I bought it and started it last year, and kind of forgot about it over Christmas and all that crap. Then once I started my blog, I picked it back up, well I picked up my kindle and turned it on.
ANYWAY, this is not First Tuesday Book Club!
I wanted to try and find similar books. MS stories that weren't all doom and gloom, woe is me, the end is nigh, blah. I really enjoyed the humour of 'Awkward Bitch'. Surely there are other reads like it! Even stories of individuals with other chronic illnesses! I found comfort in knowing that others in a similar situation shared the same thoughts and frustrations. Anyway...as I was saying, surely there are other reads like this one...
Think again.
I sat in bed, so very disappointed that I had finished the book. So I searched for others on my kindle.
There was all the usual crap about diet and all about being healthy, books for medical professionals, all sciencey and shit etc.
I then began noticing some book titles that really troubled me. I found one titled, 'Blessed With MS: How God Used Multiple Sclerosis to Save My Life' and another, 'Our Blessing...Multiple Sclerosis'.
It really fucked me off. Am I being completely judgemental about other people's stories of MS? Perhaps. But c'mon! (Sorry if you are offended by my reaction, but I just wonder how many vulnerable people these books have sucked in. It really doesn't wash well with me, obviously)
Having MS is NOT a blessing.
The end.
Wednesday, 22 February 2012
A few points about MS, from my perspective
The following is purely a reflection of MY understanding of stuff and things about Multiple Sclerosis that I have found interesting and important or that may affect me personally.
A few things about Multiple Sclerosis that you may or may not know or realise:
- There is no cure for MS.
- The disease course of MS is different for everyone who has it, and it is therefore unpredictable. One thing is certain, someone with MS with not get better from it. But in saying this, most individuals with MS can lead a 'normal' life.
- Although the physical aspect of the disease is evident on the brain (and the spinal cord) in the way of scars (aka sclerosis), people with MS do not 'lose their mind', so to speak. The cognitive symptoms of MS can cause people with MS to become forgetful ("Um why did I open the fridge for again?") or to be slow in their thinking processes. We do not become dumber or lose our 'smarts'.
- Women with MS can have children. In fact, it is less likely that a woman will relapse while she is pregnant. There is a heightened risk in the first trimester, and towards the very end, but all in all women with MS when pregnant find they get no relapses, or they are very very mild. So women with MS can keep popping out the kiddies to avoid relapses (although I do not believe this is a recommended form of MS management).
- Yay, get preggas! Okay, but, there is a heightened risk AFTER the birth, of a relapse. If you find any of this info online that has an accompanying graph (Love a good graph!), you will notice a dramatic spike upwards in the likelihood of relapse (within the first 3 months post-baby pop out). BUT, this is followed by a drop, back to the 'likely' course of continued, slow progression of the disease/illness/whatevers.
- MS tends to be an 'invisible' disease. This means that people will have the perception that I am totally healthy, when in fact I may be suffering from MS related symptoms. For me, they might be fatigue, heat sensitivity, twitching of muscles (or the thumb dance), tingling in the legs and that damn left pinky and up to the elbow and a weakened left knee.
- Exercise and heat can bring back some symptoms temporarily, and recently I have read that getting a cold/flu can also wake Mad Sascha. This latter is not well documented, and there is a bit of debate about things like the flu vaccine being recommended to those with MS, but then some people with MS have their own story saying that the vaccine bought on their MS...debate debate!
- Individuals are typically diagnosed with MS between the ages of 20 and 40 years of age - when individuals are in the 'prime' of their lives. Going to uni, establishing a career, starting a family, planning a life etc. This 'news' can result in depression and/or anxiety. Individuals diagnosed grieve. They grieve the loss of their 'old' self, and they need to adjust to the 'new' self. For example, the idea of travel began to appeal for me, but now I need to rethink this because of stupid things like travel insurance, travelling with medication that requires refrigeration, negating activities that may exacerbate symptoms etc. I will not be covered by travel insurance for any medical issues that are a result of my MS. The likelihood of having a relapse might be low however, Mad Sascha is unpredictable, so it cannot be ruled out. And this can elevate anxiety. Plus, holidays are meant to be fun and relaxing, but how can you be that way when you feel anxious about what might happen?
- Depression and anxiety can also be a direct result of the lesions on the brain - depending where those lesions are. Some people can suffer from uncontrollable laughing or crying which are not prompted by a scenario where crying or laughing would be expected. The lesions can also affect moodiness. I used to be a real moody bitch - though I think I am better than I used to be! (Hopefully some of you who have known me since school would agree!)
- Now for something more positive. MS is manageable. And I am managing :-)
- There is a large percentage of individuals with MS who require the possession of a walking device by age 40. If I ever need a walking stick or device, I hope there are some cool ones out there! Something hip. Colourful perhaps with an interesting shape? Oh geez. If not, maybe it can be my one and only business venture!
- It is estimated that 21 000 Australians have MS (according to the MS Society).
- MS can affect balance. So when you see me stumble a little, or bump into something, it is not because I am a closet alcoholic. If you see bruises over my shins and legs, it's probably because I got my clumsy Mad Sascha on and bumped into shit. It doesn't cause much drama for me but it's just a small annoyance.
- MS does not make you lose weight. I say this, because when I was on my lose weight idea, people would say, "Oh you look great", followed by a moment of panic and a whisper asking me if it was a result of the MS. NO! I worked my ass off to lose the weight. Geez. If anything, people with MS find it difficult to control weight if they have symptoms involving their movement and/or coordination, therefore making it difficult to exercise.
- That is all I can think of for now! I will keep adding others when they come to mind.
A few things about Multiple Sclerosis that you may or may not know or realise:
- There is no cure for MS.
- The disease course of MS is different for everyone who has it, and it is therefore unpredictable. One thing is certain, someone with MS with not get better from it. But in saying this, most individuals with MS can lead a 'normal' life.
- Although the physical aspect of the disease is evident on the brain (and the spinal cord) in the way of scars (aka sclerosis), people with MS do not 'lose their mind', so to speak. The cognitive symptoms of MS can cause people with MS to become forgetful ("Um why did I open the fridge for again?") or to be slow in their thinking processes. We do not become dumber or lose our 'smarts'.
- Women with MS can have children. In fact, it is less likely that a woman will relapse while she is pregnant. There is a heightened risk in the first trimester, and towards the very end, but all in all women with MS when pregnant find they get no relapses, or they are very very mild. So women with MS can keep popping out the kiddies to avoid relapses (although I do not believe this is a recommended form of MS management).
- Yay, get preggas! Okay, but, there is a heightened risk AFTER the birth, of a relapse. If you find any of this info online that has an accompanying graph (Love a good graph!), you will notice a dramatic spike upwards in the likelihood of relapse (within the first 3 months post-baby pop out). BUT, this is followed by a drop, back to the 'likely' course of continued, slow progression of the disease/illness/whatevers.
- MS tends to be an 'invisible' disease. This means that people will have the perception that I am totally healthy, when in fact I may be suffering from MS related symptoms. For me, they might be fatigue, heat sensitivity, twitching of muscles (or the thumb dance), tingling in the legs and that damn left pinky and up to the elbow and a weakened left knee.
- Exercise and heat can bring back some symptoms temporarily, and recently I have read that getting a cold/flu can also wake Mad Sascha. This latter is not well documented, and there is a bit of debate about things like the flu vaccine being recommended to those with MS, but then some people with MS have their own story saying that the vaccine bought on their MS...debate debate!
- Individuals are typically diagnosed with MS between the ages of 20 and 40 years of age - when individuals are in the 'prime' of their lives. Going to uni, establishing a career, starting a family, planning a life etc. This 'news' can result in depression and/or anxiety. Individuals diagnosed grieve. They grieve the loss of their 'old' self, and they need to adjust to the 'new' self. For example, the idea of travel began to appeal for me, but now I need to rethink this because of stupid things like travel insurance, travelling with medication that requires refrigeration, negating activities that may exacerbate symptoms etc. I will not be covered by travel insurance for any medical issues that are a result of my MS. The likelihood of having a relapse might be low however, Mad Sascha is unpredictable, so it cannot be ruled out. And this can elevate anxiety. Plus, holidays are meant to be fun and relaxing, but how can you be that way when you feel anxious about what might happen?
- Depression and anxiety can also be a direct result of the lesions on the brain - depending where those lesions are. Some people can suffer from uncontrollable laughing or crying which are not prompted by a scenario where crying or laughing would be expected. The lesions can also affect moodiness. I used to be a real moody bitch - though I think I am better than I used to be! (Hopefully some of you who have known me since school would agree!)
- Now for something more positive. MS is manageable. And I am managing :-)
- There is a large percentage of individuals with MS who require the possession of a walking device by age 40. If I ever need a walking stick or device, I hope there are some cool ones out there! Something hip. Colourful perhaps with an interesting shape? Oh geez. If not, maybe it can be my one and only business venture!
- It is estimated that 21 000 Australians have MS (according to the MS Society).
- MS can affect balance. So when you see me stumble a little, or bump into something, it is not because I am a closet alcoholic. If you see bruises over my shins and legs, it's probably because I got my clumsy Mad Sascha on and bumped into shit. It doesn't cause much drama for me but it's just a small annoyance.
- MS does not make you lose weight. I say this, because when I was on my lose weight idea, people would say, "Oh you look great", followed by a moment of panic and a whisper asking me if it was a result of the MS. NO! I worked my ass off to lose the weight. Geez. If anything, people with MS find it difficult to control weight if they have symptoms involving their movement and/or coordination, therefore making it difficult to exercise.
- That is all I can think of for now! I will keep adding others when they come to mind.
Saturday, 18 February 2012
Thumb up. Thumb down. Thumb dancing around.
You may have come to this post expecting to hear about my fun trip to the Haematologist. But before I post about her (Haema, let's call her), there are many other bits and pieces to be covered.
I guess my blog now is coming closer to the present time.
So before Haema, Alexia leaves and M returns.
And as much as M is a big part of my life, my best friend and my concrete support/rock/anchor, I do not want to focus on him (Sorry M) in this blog. Simply know, that he has returned somewhere mid 2011. From then on he is on bot bot (injecting the Rebif in the top of my bottom) duty every few weeks. And what a stellar job he does. It's very nice to have a break from injecting myself. There was a period of time in the latter part of 2011 where I was just really sick of doing it and I would put it off because it felt like such a chore.
I also have to say here that I am very grateful for my dear sis to have stayed with me for a while when M was away. Although there were arguments and she was annoying (Love you Alexia), it was great to be annoyed. It really was. Oh and there were some goods times of course. I was probably a bitch sometimes. Yes. True. I know. Can you imagine? But, in my defence, I was not in a good way most of the time.
So things are back to usual in the home space. Neighbours is on. M makes comments about the poor acting and unrealistic events, yet I know he secretly loves watching it. It's my time to escape and not think. You know? Yes. You know. You probably do it with Big Bang Theory or something similar.
Anyways, M and I are relaxing after a hard day's work. I think it was a Wednesday. Wednesday's must be cursed. Wednesday's are good though, as it's hump day and the weekend is closer now than it was.
For me, Wednesday's were massive. All classes on, followed by a staff meeting (and gym if I was up for it - BTW, I reached my goal of losing 15kgs). You get what I am saying right? So we are taking it easy lying on the couch and then I feel that my left thumb is weird. I look down. It's moving. It's fucking moving by itself. Twitching.
I feel a panic come over me. It's not constant, but it was sometimes. Like for a few good seconds, maybe 5. Then a 2 second break, then 4 seconds of twitching, then maybe 10 seconds of a break. Unpredictable. Again. Why? I do not like! I do not likey like at all!
I show M. I am unsure as to how much M has taken in the whole MS thing and the possible symptoms that could occur. I don't think he realised straight away that this is Mad Sascha coming out to play. "It's the MS" I said. I wanted to cry. There was my thumb, just moving alone. I watched it. I told it to stop. It did not stop. Freaking. I was a spastic. Literally. It was a small bout of spasticity.
After a few minutes it 'calmed down'. But I was on high alert to see if it happened again. It kinda did, but not as intensely.
The next morning, I drove to work and it was doing it again. I had a little tear sesh in the car. No sobbing, just a few tears. I had mascara on anyways so that stopped me from flooding Palmerston. Again, the twitching was intermittent.
The rest of the day and part of the next morning saw some more thumb twitching. A new symptom that I had not had at all. I sometimes had felt muscle parts twitch in my leg, bum and arms, but not like this. This was constant, even if only in small doses.
The thumb twitching was late September 2011. I haven't had the same symptom since, but I was very paranoid at the time about it being the start of a relapse or the start of a whole new chapter of Mad Sascha. I got confused though. Would just that few days of thumb twitching be considered a relapse? Or is a relapse when my old faithful symptoms find their way back? Am I ever going to get my head around this stupid, annoying illness?!
I guess my blog now is coming closer to the present time.
So before Haema, Alexia leaves and M returns.
And as much as M is a big part of my life, my best friend and my concrete support/rock/anchor, I do not want to focus on him (Sorry M) in this blog. Simply know, that he has returned somewhere mid 2011. From then on he is on bot bot (injecting the Rebif in the top of my bottom) duty every few weeks. And what a stellar job he does. It's very nice to have a break from injecting myself. There was a period of time in the latter part of 2011 where I was just really sick of doing it and I would put it off because it felt like such a chore.
I also have to say here that I am very grateful for my dear sis to have stayed with me for a while when M was away. Although there were arguments and she was annoying (Love you Alexia), it was great to be annoyed. It really was. Oh and there were some goods times of course. I was probably a bitch sometimes. Yes. True. I know. Can you imagine? But, in my defence, I was not in a good way most of the time.
So things are back to usual in the home space. Neighbours is on. M makes comments about the poor acting and unrealistic events, yet I know he secretly loves watching it. It's my time to escape and not think. You know? Yes. You know. You probably do it with Big Bang Theory or something similar.
Anyways, M and I are relaxing after a hard day's work. I think it was a Wednesday. Wednesday's must be cursed. Wednesday's are good though, as it's hump day and the weekend is closer now than it was.
For me, Wednesday's were massive. All classes on, followed by a staff meeting (and gym if I was up for it - BTW, I reached my goal of losing 15kgs). You get what I am saying right? So we are taking it easy lying on the couch and then I feel that my left thumb is weird. I look down. It's moving. It's fucking moving by itself. Twitching.
I feel a panic come over me. It's not constant, but it was sometimes. Like for a few good seconds, maybe 5. Then a 2 second break, then 4 seconds of twitching, then maybe 10 seconds of a break. Unpredictable. Again. Why? I do not like! I do not likey like at all!
I show M. I am unsure as to how much M has taken in the whole MS thing and the possible symptoms that could occur. I don't think he realised straight away that this is Mad Sascha coming out to play. "It's the MS" I said. I wanted to cry. There was my thumb, just moving alone. I watched it. I told it to stop. It did not stop. Freaking. I was a spastic. Literally. It was a small bout of spasticity.
After a few minutes it 'calmed down'. But I was on high alert to see if it happened again. It kinda did, but not as intensely.
The next morning, I drove to work and it was doing it again. I had a little tear sesh in the car. No sobbing, just a few tears. I had mascara on anyways so that stopped me from flooding Palmerston. Again, the twitching was intermittent.
The rest of the day and part of the next morning saw some more thumb twitching. A new symptom that I had not had at all. I sometimes had felt muscle parts twitch in my leg, bum and arms, but not like this. This was constant, even if only in small doses.
The thumb twitching was late September 2011. I haven't had the same symptom since, but I was very paranoid at the time about it being the start of a relapse or the start of a whole new chapter of Mad Sascha. I got confused though. Would just that few days of thumb twitching be considered a relapse? Or is a relapse when my old faithful symptoms find their way back? Am I ever going to get my head around this stupid, annoying illness?!
Rebif - enemy or not?
When beginning Rebif there is a titration period. Ladies and gentlemen, this has nothing to do with tits. It means that you begin on a lower dose and gradually make your way up to the full dosage over several weeks. The machine takes care of the injection amounts during this titration period.
So Monday afternoon arrives and it's time for me to stab myself in one of the suggested sites. Tops of the thighs, stomach (upper and lower), back of the arm (awkward and haven't been there yet) or on top of the bot bot (bottom - too difficult to do alone).
I prepare myself with all the bits and pieces I need. The Rebismart machine, needle, needle disposal thing, cotton wipe, Witch Hazel and the cool pack. I gather all these and take a seat on the couch. I place the cool pack on my right thigh and lay down for a while. It's all good. I am calm. Diabetics do this stuff all the time!
I nervously follow the prompts on the machine and do everything slowly, calmly and carefully........I inject. Pft! That didn't even hurt! Awesome. Great! No pain really, just the feeling of the needle going in and coming out but it was so quick and easy. I can do this forever! No worries.
I took some panadol as suggested, to avoid the cold and flu like symptoms.
And there you have it.
As I go through the titration period, I get brave and stop taking panadol. After all, I need to make sure I don't give my liver too much work, and taking panadol (paracetamol) 3 times a week isn't really a habit I want to give in to. I got no cold and flu symptoms and reported this back to Karen. She was really pleased.
I get up to the full dose of Rebif and it does take a bit longer now to inject, and it can sting a little when it is going in, but really I feel so confident about this drug. I have had none of the side effects related to cold and flu, just some redness and itchiness around the injection sites. Nothing I can't handle! Or so it seemed...
I take my medication every Monday, Tuesday and Wednesday evenings. One Wednesday evening, I went about my Rebif routine.
Come 9pm, I start feeling feverish. Oh great, I am getting sick. This sucks. I haven't been sick for ages! Mid-week too. And Thursdays at work are hectic, two doubles of year 9s. It's okay. I will drink lots of water and OJ (do your stuff Vit C) and get to bed early so my body can fight it off before it really begins.
I get to bed. I get worse. Sweating. Shivers. Cold. Hot. Sheet on. Sheet off. Air con on. Air con off. I'm getting worse. Weird dreams too. Tossing and turning. Cannot get comfy. I convinced myself that I was getting bronchitis or something because I also had a sore throat.
I got up at some dark hour, and I SMSed work to say that I was getting sick and running a fever blah blah blah so I won't be in. I sat up and emailed some work through while I waited for the paracetamol to kick in.
I eventually got to sleep after my fever fizzled out.
I woke up.
I felt fine.
Yes, I did sleep in, this is true. But the sore throat was gone. No fever. Nothing. Just normal. I went to the doctor anyway, to at least get a medical certificate.
The doc confirmed, I had had my first cold and flu like symptom side effects from Rebif.
NOOOOOO! But I had come so far without ANY side effects. Why now? My relationship with Rebif was going great guns. This is stupid. Is it going to be that bad every time now? Well no Sascha, it's not. It is common for this to happen when on Rebif, particularly in the first 6 months of treatment, so relax would you? And think about all the stuff you have been told, and the things you have read, and don't freak out. Ok? Ok.
From then on, I did take paracetamol after my injection. It did ward off the cold and flu like side effects that I had experienced and I didn't have to take another day off work because of those symptoms. This was okay, expect I worried about my liver. My regular blood tests (every 4-6 weeks) for liver function and blood cell count had been a bit up here and there. The blood counts were fine, but the liver function was not great, but nothing to panic about as it is expected that they rise while my body gets used to the drug, Rebif.
I was a bit angry with my body for not accepting Rebif. I did not want to have to try some other drug. This played on my mind a lot. And every time I got each of my blood tests back, I got nervous. I googled stuff (Yup, still haven't learnt to stop that). But I was also having my results faxed to Dr S, and I thought, well, if he was concerned, he would call. He had called once before after my first blood test since starting Rebif. I didn't get a chance to talk to him, but he left a message to say that I should keep going and that he was not concerned. This gave me some relief, but not enough. Probably because the GP I was seeing was freaking out. "I am concerned" she said. Well alright. You know Dr S is getting my results too and he hasn't called, so I am sure it's fine. Hang on. Shouldn't she be the one saying this to me? Oh fuck I don't know.
Sorry, I am realising what a long post this is. Oh well. Thanks for stickin' around!
I got to a point where I really wanted to stop taking paracetamol after every injection. So I stopped. And to my surprise, some nights I got no reaction, but unfortunately others I would feel like 2 day old dog poo stuck in the crevices of a smelly wet boot. Not only do I have this unpredictable illness, but the medication I am on for it is also unpredictable. Help me universe!
I did suffer through some awful nights of fever and sweats and chills etc, but others, I felt normal.
I also cut down on my drinking of alcohol a lot. Actually, being in D-Town with the weather how it is (hot - ALL the time), drinking was not really something that I wanted to do, unless I was guaranteed the best air conditioning conditions. But it was also because, again, I did not want my liver to become a workaholic and crash.
My results from the blood tests were still coming back elevated.
The doc referred me to a Haematologist.
So Monday afternoon arrives and it's time for me to stab myself in one of the suggested sites. Tops of the thighs, stomach (upper and lower), back of the arm (awkward and haven't been there yet) or on top of the bot bot (bottom - too difficult to do alone).
I prepare myself with all the bits and pieces I need. The Rebismart machine, needle, needle disposal thing, cotton wipe, Witch Hazel and the cool pack. I gather all these and take a seat on the couch. I place the cool pack on my right thigh and lay down for a while. It's all good. I am calm. Diabetics do this stuff all the time!
I nervously follow the prompts on the machine and do everything slowly, calmly and carefully........I inject. Pft! That didn't even hurt! Awesome. Great! No pain really, just the feeling of the needle going in and coming out but it was so quick and easy. I can do this forever! No worries.
I took some panadol as suggested, to avoid the cold and flu like symptoms.
And there you have it.
As I go through the titration period, I get brave and stop taking panadol. After all, I need to make sure I don't give my liver too much work, and taking panadol (paracetamol) 3 times a week isn't really a habit I want to give in to. I got no cold and flu symptoms and reported this back to Karen. She was really pleased.
I get up to the full dose of Rebif and it does take a bit longer now to inject, and it can sting a little when it is going in, but really I feel so confident about this drug. I have had none of the side effects related to cold and flu, just some redness and itchiness around the injection sites. Nothing I can't handle! Or so it seemed...
I take my medication every Monday, Tuesday and Wednesday evenings. One Wednesday evening, I went about my Rebif routine.
Come 9pm, I start feeling feverish. Oh great, I am getting sick. This sucks. I haven't been sick for ages! Mid-week too. And Thursdays at work are hectic, two doubles of year 9s. It's okay. I will drink lots of water and OJ (do your stuff Vit C) and get to bed early so my body can fight it off before it really begins.
I get to bed. I get worse. Sweating. Shivers. Cold. Hot. Sheet on. Sheet off. Air con on. Air con off. I'm getting worse. Weird dreams too. Tossing and turning. Cannot get comfy. I convinced myself that I was getting bronchitis or something because I also had a sore throat.
I got up at some dark hour, and I SMSed work to say that I was getting sick and running a fever blah blah blah so I won't be in. I sat up and emailed some work through while I waited for the paracetamol to kick in.
I eventually got to sleep after my fever fizzled out.
I woke up.
I felt fine.
Yes, I did sleep in, this is true. But the sore throat was gone. No fever. Nothing. Just normal. I went to the doctor anyway, to at least get a medical certificate.
The doc confirmed, I had had my first cold and flu like symptom side effects from Rebif.
NOOOOOO! But I had come so far without ANY side effects. Why now? My relationship with Rebif was going great guns. This is stupid. Is it going to be that bad every time now? Well no Sascha, it's not. It is common for this to happen when on Rebif, particularly in the first 6 months of treatment, so relax would you? And think about all the stuff you have been told, and the things you have read, and don't freak out. Ok? Ok.
From then on, I did take paracetamol after my injection. It did ward off the cold and flu like side effects that I had experienced and I didn't have to take another day off work because of those symptoms. This was okay, expect I worried about my liver. My regular blood tests (every 4-6 weeks) for liver function and blood cell count had been a bit up here and there. The blood counts were fine, but the liver function was not great, but nothing to panic about as it is expected that they rise while my body gets used to the drug, Rebif.
I was a bit angry with my body for not accepting Rebif. I did not want to have to try some other drug. This played on my mind a lot. And every time I got each of my blood tests back, I got nervous. I googled stuff (Yup, still haven't learnt to stop that). But I was also having my results faxed to Dr S, and I thought, well, if he was concerned, he would call. He had called once before after my first blood test since starting Rebif. I didn't get a chance to talk to him, but he left a message to say that I should keep going and that he was not concerned. This gave me some relief, but not enough. Probably because the GP I was seeing was freaking out. "I am concerned" she said. Well alright. You know Dr S is getting my results too and he hasn't called, so I am sure it's fine. Hang on. Shouldn't she be the one saying this to me? Oh fuck I don't know.
Sorry, I am realising what a long post this is. Oh well. Thanks for stickin' around!
I got to a point where I really wanted to stop taking paracetamol after every injection. So I stopped. And to my surprise, some nights I got no reaction, but unfortunately others I would feel like 2 day old dog poo stuck in the crevices of a smelly wet boot. Not only do I have this unpredictable illness, but the medication I am on for it is also unpredictable. Help me universe!
I did suffer through some awful nights of fever and sweats and chills etc, but others, I felt normal.
I also cut down on my drinking of alcohol a lot. Actually, being in D-Town with the weather how it is (hot - ALL the time), drinking was not really something that I wanted to do, unless I was guaranteed the best air conditioning conditions. But it was also because, again, I did not want my liver to become a workaholic and crash.
My results from the blood tests were still coming back elevated.
The doc referred me to a Haematologist.
Meeting my injector
It was the Friday directly following the Monday of the official diagnosis. This Friday I was going to grab the train up to Sydney, check into a hotel I had booked for Alexia and myself, then head to a great little pub in Glebe for my (pre) 30th Birthday celebrations.
But before all that exciting stuff, I needed to wait for the Rebif nurse to arrive at mum's to show me how I will be injecting myself with the disease modifying drug for, potentially, the rest of my time on this Earth. A very different kind of excitement.
Karen rocked up with a bag full of stuff. Rebif stuff. Tea was made, as was small talk. Then it was down to business.
I met Rebismart. The machine that would do lots of things for me. Now, when I say 'machine', it's no larger than the size of my hand. Here is a pic taken from the www.
Now, to explain. The large thing is Rebismart's home. The home also has pictured the needles on the left. The thing in the middle is the machine. And finally on the right is a month's worth of the drug itself, Rebif.
Karen said the needles used are very small and are barely detectable at airport xray thingy machines. Phew! But I was more concerned about the pain of the thing going into my body.
Karen took out a bit of fake skin. It felt weird, but very realistic. She then showed me how to put the Rebif cartridges into the machine. Easy peasy so far. The Rebismart machine basically prompts you along the entire time. It would be very hard to screw it up.
She then showed me the skin senors on the bottom of the machine. The machine will not inject unless on skin, and it will stop injecting if contact with the skin is lost. Okay cool.
Then it was time to inject the fake skin! Oh geez. Here we go.
I pressed the inject button, located at the top of the machine which lights up green when it comes into contact with the skin signalling to go go go! I pressed it. Some noises happen - nothing offensive though. And yeah, that's it. A few more boring parts where the needle comes out and I out it into my very own needle disposal container - one piece of equipment that really made me feel right at druggie home.
So after my training, it was my turn. BUT I mentioned that I would be heading up to Sydney for an organised birthday do. Because of the possible side effects of Rebif, Karen recommended that I wait until the following week. It was all a bit of an anti-climax. It meant that I would have to do my first injection alone. Hmmm. I can do it!
Karen gave me some pointers to avoid possible side effects:
- Cool the area where you plan to inject.
- Let the Rebif come to room temp before injecting (it otherwise must be kept cool and away from light).
- Gently massage the area after injecting, then place a cool pack on the injection site.
- Wipe over the site with Witch Hazel after injecting.
- Inject in the evening.
- Take panadol after an injection.
All of these tips were to avoid injection site reactions and avoid cold and flu symptoms. So many new things to remember. I was glad I had mum there to also hear everything, in case I forgot. But looking back, I think I did a pretty good job of absorbing all this new information. Go me.
I made my way up to Sydney and met up at the hotel with Alexia. I was exhausted, so I attempted to have a nap while Alexia went for a little shop.
My nap was quite unsuccessful. Too much going on in my head. An overload of information mixed with waves of horrendous negative emotions. And on top of that, I knew I had to go back to D-Town in a few days time and I did not want to. I wanted to stay in the safe surrounds of Sydney with my friends and family.
With the unsuccessful nap, I still managed to try and look like I was ready to celebrate.
It was a great night and although I deeply missed M. But it was almost mid April now, and he was due home soon.
After all the fun, and a few more other social activities, it was time to fly back to D-Town and face term 2, and to use my Rebismart for the first time, proper.
But before all that exciting stuff, I needed to wait for the Rebif nurse to arrive at mum's to show me how I will be injecting myself with the disease modifying drug for, potentially, the rest of my time on this Earth. A very different kind of excitement.
Karen rocked up with a bag full of stuff. Rebif stuff. Tea was made, as was small talk. Then it was down to business.
I met Rebismart. The machine that would do lots of things for me. Now, when I say 'machine', it's no larger than the size of my hand. Here is a pic taken from the www.
Karen said the needles used are very small and are barely detectable at airport xray thingy machines. Phew! But I was more concerned about the pain of the thing going into my body.
Karen took out a bit of fake skin. It felt weird, but very realistic. She then showed me how to put the Rebif cartridges into the machine. Easy peasy so far. The Rebismart machine basically prompts you along the entire time. It would be very hard to screw it up.
She then showed me the skin senors on the bottom of the machine. The machine will not inject unless on skin, and it will stop injecting if contact with the skin is lost. Okay cool.
Then it was time to inject the fake skin! Oh geez. Here we go.
I pressed the inject button, located at the top of the machine which lights up green when it comes into contact with the skin signalling to go go go! I pressed it. Some noises happen - nothing offensive though. And yeah, that's it. A few more boring parts where the needle comes out and I out it into my very own needle disposal container - one piece of equipment that really made me feel right at druggie home.
So after my training, it was my turn. BUT I mentioned that I would be heading up to Sydney for an organised birthday do. Because of the possible side effects of Rebif, Karen recommended that I wait until the following week. It was all a bit of an anti-climax. It meant that I would have to do my first injection alone. Hmmm. I can do it!
Karen gave me some pointers to avoid possible side effects:
- Cool the area where you plan to inject.
- Let the Rebif come to room temp before injecting (it otherwise must be kept cool and away from light).
- Gently massage the area after injecting, then place a cool pack on the injection site.
- Wipe over the site with Witch Hazel after injecting.
- Inject in the evening.
- Take panadol after an injection.
All of these tips were to avoid injection site reactions and avoid cold and flu symptoms. So many new things to remember. I was glad I had mum there to also hear everything, in case I forgot. But looking back, I think I did a pretty good job of absorbing all this new information. Go me.
I made my way up to Sydney and met up at the hotel with Alexia. I was exhausted, so I attempted to have a nap while Alexia went for a little shop.
My nap was quite unsuccessful. Too much going on in my head. An overload of information mixed with waves of horrendous negative emotions. And on top of that, I knew I had to go back to D-Town in a few days time and I did not want to. I wanted to stay in the safe surrounds of Sydney with my friends and family.
With the unsuccessful nap, I still managed to try and look like I was ready to celebrate.
It was a great night and although I deeply missed M. But it was almost mid April now, and he was due home soon.
After all the fun, and a few more other social activities, it was time to fly back to D-Town and face term 2, and to use my Rebismart for the first time, proper.
Wednesday, 15 February 2012
Monday, April 4th, 2011 - My official diagnosis
I was in no way rejoicing after leaving Dr S's, but I did feel a bit better. Mum and I walked down to the MRI section of the public hospital and I booked in my second MRI for April. How excitement. Then mum and I went to have lunch at the Fringe Bar. I had a salad with haloumi in it. It was yum. We also met up for a short time with my mate Dan. He told me about N's illness and suggested I contact her. Apparently what she has can sometimes be misdiagnosed as MS. N has Mixed Connective Tissue Disorder. Why do these things happen to such beautiful souls like N?
At this point, I only really had the weirdo feelings going on in my left pinky, up the side to my elbow. And even that was beginning to dull. Thank goodness.
I did my best to enjoy my time in Sydney. But there were plentiful amounts of moments of sad and water pouring from the corners of my eyes. Some of these tears were shared, but they were mostly in private with...yours truly.
January, February and March passed by. There was a visit to Europe to meet up with M in that time. That was great! But travel is exhausting. I was very tired on a daily basis.
I was also planning a bit of a 30th for myself come April when in Sydney. There was no way I was going to organise something in D-Town. I'd have about 3 people rock up!
On top of that, I had a friend's wedding to get excited about too!
These kept me occupied in D-Town. As did work, and my losing weight thing.
The wedding was in the Hunter Valley a few days before my second MRI. It was beautiful! I had such a nice time, but again, getting exhausted very quickly.
I wasn't sleeping all that well, still. I blame the worrier in me. Not the warrior.
The 4th of April arrived. Mum and I got a train up to Sydney from the Gong fairly early.
Once we arrived in the MRI waiting area, I proceeded to take out all my piercings (they really need a room for this, I think I was grossing out other people) and popped a Valium. I was such a pro this time.
The MRI was as expected but the machine, unlike D-Town's, was much newer, and apparently more powerful. But it was weird, because the dude said I could keep my jeans and bra on - I had visions of my fly and bra wires lifting me up off the bed thing and attaching to the inside of the machine! This did not occur. I had to have this cage type thing placed over my head for my brain scan - ummmm, not cool. I also had dye injected into me to help expose the active lesions. The MRI crew were really nice though. I had to hit the 'panic' button once because I needed to cough. If anyone has had an MRI, you'd understand how important it is to stay as still as possible while the machine does its stuff.
MRI all done! Now to waste a few hours until my appointment with Dr S.
Wasting, wasting, wasting.
Mum and I were again warmly greeted by Dr S.
Now all the in between bits are a bit of a blur, but basically I was told, for sure, that I had Multiple Sclerosis. It was made official.
It wasn't a shock at all. It was a bit of a relief. I now realise that some people who have MS have gone years months and years before being diagnosed. I was 'lucky'.
Now time to talk drugs! Dr S recommended to go on Rebif.
It was time now, to get my head around the idea of injecting myself 3 times a week. I was going to turn into a proper, real life, drug lover.
Upon leaving Dr S, I called the Rebif nurse, and it was organised that she drop by mum's place to show me how to use Rebif and the machine that would help me inject. Just what I wanted to do before heading to Sydney for my 30th birthday celebration. NOT!
At this point, I only really had the weirdo feelings going on in my left pinky, up the side to my elbow. And even that was beginning to dull. Thank goodness.
I did my best to enjoy my time in Sydney. But there were plentiful amounts of moments of sad and water pouring from the corners of my eyes. Some of these tears were shared, but they were mostly in private with...yours truly.
January, February and March passed by. There was a visit to Europe to meet up with M in that time. That was great! But travel is exhausting. I was very tired on a daily basis.
I was also planning a bit of a 30th for myself come April when in Sydney. There was no way I was going to organise something in D-Town. I'd have about 3 people rock up!
On top of that, I had a friend's wedding to get excited about too!
These kept me occupied in D-Town. As did work, and my losing weight thing.
The wedding was in the Hunter Valley a few days before my second MRI. It was beautiful! I had such a nice time, but again, getting exhausted very quickly.
I wasn't sleeping all that well, still. I blame the worrier in me. Not the warrior.
The 4th of April arrived. Mum and I got a train up to Sydney from the Gong fairly early.
Once we arrived in the MRI waiting area, I proceeded to take out all my piercings (they really need a room for this, I think I was grossing out other people) and popped a Valium. I was such a pro this time.
The MRI was as expected but the machine, unlike D-Town's, was much newer, and apparently more powerful. But it was weird, because the dude said I could keep my jeans and bra on - I had visions of my fly and bra wires lifting me up off the bed thing and attaching to the inside of the machine! This did not occur. I had to have this cage type thing placed over my head for my brain scan - ummmm, not cool. I also had dye injected into me to help expose the active lesions. The MRI crew were really nice though. I had to hit the 'panic' button once because I needed to cough. If anyone has had an MRI, you'd understand how important it is to stay as still as possible while the machine does its stuff.
MRI all done! Now to waste a few hours until my appointment with Dr S.
Wasting, wasting, wasting.
Mum and I were again warmly greeted by Dr S.
Now all the in between bits are a bit of a blur, but basically I was told, for sure, that I had Multiple Sclerosis. It was made official.
It wasn't a shock at all. It was a bit of a relief. I now realise that some people who have MS have gone years months and years before being diagnosed. I was 'lucky'.
Now time to talk drugs! Dr S recommended to go on Rebif.
It was time now, to get my head around the idea of injecting myself 3 times a week. I was going to turn into a proper, real life, drug lover.
Upon leaving Dr S, I called the Rebif nurse, and it was organised that she drop by mum's place to show me how to use Rebif and the machine that would help me inject. Just what I wanted to do before heading to Sydney for my 30th birthday celebration. NOT!
Tuesday, 14 February 2012
I've had MS for how long?!
I got through the next few weeks alone in D-Town. How did I do this? Well, I was kept busy at work, I got to the gym most days and on weekends and I was writing snail mail letters plus email to M when I had the chance. I was also kept occupied by keeping in contact with K - no more than usual. Our phone convos and SMS were very regular.
I had my flight booked to Sydney for the day after the school year finished. I couldn't wait to get out of the lonely tropics. But before leaving D-Town mum contacted me about organising an appointment with a Neurologist via her awesome, lovely, kind, empathetic GP, Dr B. Legend. Mum booked me in to see Dr B a few days after my Sydney arrival.
When we saw Dr B he said he had organised an appointment for me to see Dr S, the Neurologist in Sydney. The greatest thing about this was that Dr S was not only a Neurologist but he was a Neurologist who specialised in MS. Nice one.
I felt a bit anxious about seeing Dr S, because he knew so much about MS I was scared I was going to receive more info about my individual MS situation. This is a good thing right? Yeah sure, if the info is positive...but what if it was negative? 'What ifs' are real motherfuckers.
Prior to seeing Dr S, I organised with a bit of pain to have my CD of brain and cervical spine images to be posted to Dr S's office. $30 later, it arrives safely. Phew. I wasn't keen on having to get another MRI done, and I just wanted to focus on enjoying my holiday time and enjoying my Sydney.
So mum and I went to see Dr S. His PA, receptionist or whatever is a funny woman. She is nice but is a bit scary. We sat waiting in the nice waiting area, reading nice magazine, enjoying the nice air conditioning and then we were called upon.
Basically we went through the same kind of procedures as I had done with the GP, ER doc and other D-Town Neuro. A few pokes and prods, describing all the weirdo sensations, trying to match up the times as to when I had them, what parts of my body were affected yadda yadda. Writing, writing, busy writing. Then we got down to checking out the pictures of my brain (still feels yukky to look at!). This was the first time mum had seen them. She was cool and calm. The ones of my spine did not show up, so he could only speak of the brain.
He relayed a lot of info that I had already been told by the other neuro in D-Town. Stuff like, what MS is, a bit about medication and the different types of MS etc.
Dr S said I had a lot of lesions on my brain. I thought that myself, but I didn't really understand how much 'a lot' is. I told him about how some things now make sense to me. For example, I have always felt like I am tired a lot. And as most people do, you think it's work, or poor sleep or something else. You accept those excuses and get on with it. I thought maybe I was just lazy. I had lost a bit of weight since my weight loss plan. But I didn't 'feel' any 'lighter'. I do have poor sleep, often struggling to get to sleep and stay asleep. I get hot. I get hot very easily. This was definitely one symptom of MS that I strongly believe I have been suffering from for quite a while.
I remember once in Cammeray, everyone was outside, enjoying the sun, and the warm summer weather. I was very hot though, and I stayed inside. I would pop out occasionally to socialise, but I really couldn't stand it. People were asking me what was wrong. I just made up some excuse that I was tired and feeling hot but I wouldn't go into exactly how hot. M asked me too. He was so puzzled as to why I was inside. I think he thought that something was wrong. As if I was cranky or upset. I was just plain hot. I was embarrassed about how hot I was and the sweat that seeped from my forehead and face in general. There had been many times where I felt this way. And now, it made sense. As I have mentioned before, I would often be so puzzled and curious as to why no one else looked as hot as I did.
Anyways, back to Dr S. He said something interesting, which was a bit confronting but it had its positives. He believed that I have had MS for years. 5 to 10. Hey? What? 5 to 10 years?! Shit. And this is positive how??? Well, I had many lesions on my brain, but my more serious MS symptoms had not reared their ugly head until now. Sure the fatigue and heat thing, but nothing that made me really worry enough to go to ER and then have an MRI. So the progression of my MS must be slow. Therefore I was not considered to suffer from Progressive MS types. If you have read up on MS at all, you may have come across these types. They are faster. It is extremely sad and my heart goes out to anyone who has or knows someone with this type of MS. It is so unfair.
Due to Dr S's idea/theory that I have had MS for many years, I was able to get the drugs on the 'compassionate usage schemes' instead of waiting for an official diagnosis after a second MRI 3-6 months later. But the question was posed by Dr S, "Do you want to start to inject yourself every other day?". He said that waiting a few months before starting any medication would not affect the stage of MS that I was at. So mum and I declined the drugs.
We picked up a booklet from Dr S, including an article vitamin D. Sun is good, pity I get so bloody hot! I booked another appointment for April, which would be the next time I'd be in Sydney.
Then we left.
I had my flight booked to Sydney for the day after the school year finished. I couldn't wait to get out of the lonely tropics. But before leaving D-Town mum contacted me about organising an appointment with a Neurologist via her awesome, lovely, kind, empathetic GP, Dr B. Legend. Mum booked me in to see Dr B a few days after my Sydney arrival.
When we saw Dr B he said he had organised an appointment for me to see Dr S, the Neurologist in Sydney. The greatest thing about this was that Dr S was not only a Neurologist but he was a Neurologist who specialised in MS. Nice one.
I felt a bit anxious about seeing Dr S, because he knew so much about MS I was scared I was going to receive more info about my individual MS situation. This is a good thing right? Yeah sure, if the info is positive...but what if it was negative? 'What ifs' are real motherfuckers.
Prior to seeing Dr S, I organised with a bit of pain to have my CD of brain and cervical spine images to be posted to Dr S's office. $30 later, it arrives safely. Phew. I wasn't keen on having to get another MRI done, and I just wanted to focus on enjoying my holiday time and enjoying my Sydney.
So mum and I went to see Dr S. His PA, receptionist or whatever is a funny woman. She is nice but is a bit scary. We sat waiting in the nice waiting area, reading nice magazine, enjoying the nice air conditioning and then we were called upon.
Basically we went through the same kind of procedures as I had done with the GP, ER doc and other D-Town Neuro. A few pokes and prods, describing all the weirdo sensations, trying to match up the times as to when I had them, what parts of my body were affected yadda yadda. Writing, writing, busy writing. Then we got down to checking out the pictures of my brain (still feels yukky to look at!). This was the first time mum had seen them. She was cool and calm. The ones of my spine did not show up, so he could only speak of the brain.
He relayed a lot of info that I had already been told by the other neuro in D-Town. Stuff like, what MS is, a bit about medication and the different types of MS etc.
Dr S said I had a lot of lesions on my brain. I thought that myself, but I didn't really understand how much 'a lot' is. I told him about how some things now make sense to me. For example, I have always felt like I am tired a lot. And as most people do, you think it's work, or poor sleep or something else. You accept those excuses and get on with it. I thought maybe I was just lazy. I had lost a bit of weight since my weight loss plan. But I didn't 'feel' any 'lighter'. I do have poor sleep, often struggling to get to sleep and stay asleep. I get hot. I get hot very easily. This was definitely one symptom of MS that I strongly believe I have been suffering from for quite a while.
I remember once in Cammeray, everyone was outside, enjoying the sun, and the warm summer weather. I was very hot though, and I stayed inside. I would pop out occasionally to socialise, but I really couldn't stand it. People were asking me what was wrong. I just made up some excuse that I was tired and feeling hot but I wouldn't go into exactly how hot. M asked me too. He was so puzzled as to why I was inside. I think he thought that something was wrong. As if I was cranky or upset. I was just plain hot. I was embarrassed about how hot I was and the sweat that seeped from my forehead and face in general. There had been many times where I felt this way. And now, it made sense. As I have mentioned before, I would often be so puzzled and curious as to why no one else looked as hot as I did.
Anyways, back to Dr S. He said something interesting, which was a bit confronting but it had its positives. He believed that I have had MS for years. 5 to 10. Hey? What? 5 to 10 years?! Shit. And this is positive how??? Well, I had many lesions on my brain, but my more serious MS symptoms had not reared their ugly head until now. Sure the fatigue and heat thing, but nothing that made me really worry enough to go to ER and then have an MRI. So the progression of my MS must be slow. Therefore I was not considered to suffer from Progressive MS types. If you have read up on MS at all, you may have come across these types. They are faster. It is extremely sad and my heart goes out to anyone who has or knows someone with this type of MS. It is so unfair.
Due to Dr S's idea/theory that I have had MS for many years, I was able to get the drugs on the 'compassionate usage schemes' instead of waiting for an official diagnosis after a second MRI 3-6 months later. But the question was posed by Dr S, "Do you want to start to inject yourself every other day?". He said that waiting a few months before starting any medication would not affect the stage of MS that I was at. So mum and I declined the drugs.
We picked up a booklet from Dr S, including an article vitamin D. Sun is good, pity I get so bloody hot! I booked another appointment for April, which would be the next time I'd be in Sydney.
Then we left.
Friday, 10 February 2012
The start of the sinking in
When I told mum over the phone, I still was fine, calm even. I retold her everything I could remember from what the neuro told me. How MS is manageable, the medications, the whole thing about having another MRI after 3-6 months time blah blah blah. Mum seemed calm too. Shock maybe?
So after I got to my car, I started to drive to the gym. I got an SMS. It was from mum. She said she doesn't think she is okay with it. Well why would you be okay with it? It's not okay. It's shit.
I pulled over and called her up. There were tears on both ends. The realisation of this news was beginning to now sink in for me. I assured mum that things would be fine and we will cope and she reciprocated these thoughts. What other options did I have? There are no high cliffs in D-Town to jump off.
I emailed M, and asked him to call when he had an opportunity. I wasn't going to break the news in an email. So I waited patiently for his call.
Meanwhile, I got onto google. Why didn't google tell me my weirdo feelings could have been MS? NONE of my self diagnosis attempts even mentioned MS. Lesson learnt. But I wasn't trying to seek a second self-opinion. I wanted to know more about what MS was.
So I googled MS. Loads of info. Lists of possible symptoms. Combining the info I was reading and what I had been told by the neuro, I understood what was happening and why I had all these asymmetrical weirdo symptoms. So there was a bit of a relief I suppose. With anything medical, when you find out what is wrong, then you can make attempts to understand and as a result, things aren't as scary. Or are they? I guess it depends on what illness you have. I wasn't scared yet.
One of the most frustrating things about MS is that it is unpredictable. The only thing certain, is that I was not going to get better. It is very slow (in most cases). In my case, it is slow. The medications out there assist in slowing the progression of the disease too (yay!). But at this stage, I was still considered undiagnosed. I just had to put up with symptoms I currently had and get on with life.
One thing that made sense to me when I was reading up on MS, was the sensitivity to heat. I thought I was just a freak all this time. A sweaty hot person. But now, I can understand. And all those times I thought to myself, "Shit it's hot. I am so hot. Why does no one else look as hot? Am I the only one?" Yes Sascha. Others may be hot, but you are a different hot. More about this hot topic in upcoming posts as it is a significant symptom for me.
I called dad. I told him. He was upset. I could hear it in his voice. "Oh Sascha". Tears again.
I called K. My bestie. She handled it well. She was upset, but dealt with it very well. We made jokes. We talked about Susan from Neighbours. K is THE BEST at bringing in humour to conquer sadness. We referred to my MS as Mad Sascha. So that is what I would call my MS with K from then on. "Oh Mad Sascha is being a bitch today" or "Mad Sascha is alright, I think she might be leaving soon". Perfect title for my blog too!
M rang. I told him. I cried. He was awesome. It was SO hard with him being so far away. And I knew it would be months until I saw him again. I needed a hug. Fucking hell. I really needed that hug from M.
I had to do a bit of explaining when I told M, K and the fam. MS 101 basics. I was confident that they would all do their own research to see how they could help, and to try and understand.
M probably could have come home. But it was not necessary. I was hardcore. Concrete was now a staple in my life and I would need to drink it every day for a while.
They ALL offered to fly up to see me. Mum, dad and K. But I was due to fly to Sydney in only a few weeks. So I declined all of their offers. But now, I kinda wish that I said yes to K. Mum and dad would have made it way too emotional for me. I probably needed some doses of K. All this is easily said after the fact.
One thing M did say to me over the phone, that still brings tears to my eyes today, is that he would push me around in a wheelchair if he had to. This meant SO much to me.
Now I had to somehow pass the time until I got to Sydney. Alone. CRAP. Will my head get any rest from mad thoughts?
So after I got to my car, I started to drive to the gym. I got an SMS. It was from mum. She said she doesn't think she is okay with it. Well why would you be okay with it? It's not okay. It's shit.
I pulled over and called her up. There were tears on both ends. The realisation of this news was beginning to now sink in for me. I assured mum that things would be fine and we will cope and she reciprocated these thoughts. What other options did I have? There are no high cliffs in D-Town to jump off.
I emailed M, and asked him to call when he had an opportunity. I wasn't going to break the news in an email. So I waited patiently for his call.
Meanwhile, I got onto google. Why didn't google tell me my weirdo feelings could have been MS? NONE of my self diagnosis attempts even mentioned MS. Lesson learnt. But I wasn't trying to seek a second self-opinion. I wanted to know more about what MS was.
So I googled MS. Loads of info. Lists of possible symptoms. Combining the info I was reading and what I had been told by the neuro, I understood what was happening and why I had all these asymmetrical weirdo symptoms. So there was a bit of a relief I suppose. With anything medical, when you find out what is wrong, then you can make attempts to understand and as a result, things aren't as scary. Or are they? I guess it depends on what illness you have. I wasn't scared yet.
One of the most frustrating things about MS is that it is unpredictable. The only thing certain, is that I was not going to get better. It is very slow (in most cases). In my case, it is slow. The medications out there assist in slowing the progression of the disease too (yay!). But at this stage, I was still considered undiagnosed. I just had to put up with symptoms I currently had and get on with life.
One thing that made sense to me when I was reading up on MS, was the sensitivity to heat. I thought I was just a freak all this time. A sweaty hot person. But now, I can understand. And all those times I thought to myself, "Shit it's hot. I am so hot. Why does no one else look as hot? Am I the only one?" Yes Sascha. Others may be hot, but you are a different hot. More about this hot topic in upcoming posts as it is a significant symptom for me.
I called dad. I told him. He was upset. I could hear it in his voice. "Oh Sascha". Tears again.
I called K. My bestie. She handled it well. She was upset, but dealt with it very well. We made jokes. We talked about Susan from Neighbours. K is THE BEST at bringing in humour to conquer sadness. We referred to my MS as Mad Sascha. So that is what I would call my MS with K from then on. "Oh Mad Sascha is being a bitch today" or "Mad Sascha is alright, I think she might be leaving soon". Perfect title for my blog too!
M rang. I told him. I cried. He was awesome. It was SO hard with him being so far away. And I knew it would be months until I saw him again. I needed a hug. Fucking hell. I really needed that hug from M.
I had to do a bit of explaining when I told M, K and the fam. MS 101 basics. I was confident that they would all do their own research to see how they could help, and to try and understand.
M probably could have come home. But it was not necessary. I was hardcore. Concrete was now a staple in my life and I would need to drink it every day for a while.
They ALL offered to fly up to see me. Mum, dad and K. But I was due to fly to Sydney in only a few weeks. So I declined all of their offers. But now, I kinda wish that I said yes to K. Mum and dad would have made it way too emotional for me. I probably needed some doses of K. All this is easily said after the fact.
One thing M did say to me over the phone, that still brings tears to my eyes today, is that he would push me around in a wheelchair if he had to. This meant SO much to me.
Now I had to somehow pass the time until I got to Sydney. Alone. CRAP. Will my head get any rest from mad thoughts?
The Unofficial Diagnosis
Okay, so when the neuro said Multiple Sclerosis, I did not cry. I didn't know anything about MS except for my memories of hearing about the MS Readthon in primary school.
I knew that MS didn't mean impending death. Susan from Neighbours is still kickin' along after all. And she looks alright for a older mother-aged bird.
The neuro explained a few things. He said it was the best time to have MS (Geez I dunno about that statement) because there is so much research going on, and new meds being trialed etc. But there is no cure. Bugger.
This was not my diagnosis. If you have MS you need another MRI in 3-6 months from the initial MRI, then you can be officially diagnosed. This is because the medication, many available through the PBS (Pharmaceutical Benefits Scheme), is very expensive. So I guess they ('the man') want to 'make sure'? When this was explained to me, (obviously I was in a bit of shock) and the neuro said he couldn't diagnose me then and there I naively asked, "If it's not MS, then what else could it be?" I had this tiny bit of hope that it could be something else that could be fixed. Can you understand why I asked this? You (you being the neuro) just showed me images of my brain that has spots all over it (multiple = many, sclerosis = scars/the spots), and I need to wait another 3-6 months before a second MRI, to 'confirm' it is MS, and THEN I can go on medication? Dumb. Dumb, because his answer to my question was "It can't be anything else but MS". Right, okay.
Neuro asked me if I had any questions. I didn't really have any. Understandably I think. I did ask what I could do in the meantime, as far as dealing with my symptoms. The tingles and weak knee and weird numbness and sensitivity to the temperature of my roll-on deodorant when applied to my right underarm. Nothing. I can do nothing. I was a bit pissed off. But it wasn't long after that I realised how lucky I was not to have some of the other MS symptoms. What are they? I won't list them all, but wee wee issues, temporary blindness in one eye, spasticity. I don't think there is a need to go on. If you want to learn more about what Multiple Sclerosis is, don't expect me to explain. You can check out MS Australia. About.com is also quite comprehensive. Click here to travel direct with no stopovers. Perhaps make yourself a tea, coffee or cold drink upon arrival.
I actually felt okay at the time. I felt calm. I felt like I had accepted the news. I knew that at some point it would sink in properly. But at the time, then and there, I felt fine. Absolutely fine.
I stepped out of the hospital and I called my mum as I walked to my car.
I knew that MS didn't mean impending death. Susan from Neighbours is still kickin' along after all. And she looks alright for a older mother-aged bird.
The neuro explained a few things. He said it was the best time to have MS (Geez I dunno about that statement) because there is so much research going on, and new meds being trialed etc. But there is no cure. Bugger.
This was not my diagnosis. If you have MS you need another MRI in 3-6 months from the initial MRI, then you can be officially diagnosed. This is because the medication, many available through the PBS (Pharmaceutical Benefits Scheme), is very expensive. So I guess they ('the man') want to 'make sure'? When this was explained to me, (obviously I was in a bit of shock) and the neuro said he couldn't diagnose me then and there I naively asked, "If it's not MS, then what else could it be?" I had this tiny bit of hope that it could be something else that could be fixed. Can you understand why I asked this? You (you being the neuro) just showed me images of my brain that has spots all over it (multiple = many, sclerosis = scars/the spots), and I need to wait another 3-6 months before a second MRI, to 'confirm' it is MS, and THEN I can go on medication? Dumb. Dumb, because his answer to my question was "It can't be anything else but MS". Right, okay.
Neuro asked me if I had any questions. I didn't really have any. Understandably I think. I did ask what I could do in the meantime, as far as dealing with my symptoms. The tingles and weak knee and weird numbness and sensitivity to the temperature of my roll-on deodorant when applied to my right underarm. Nothing. I can do nothing. I was a bit pissed off. But it wasn't long after that I realised how lucky I was not to have some of the other MS symptoms. What are they? I won't list them all, but wee wee issues, temporary blindness in one eye, spasticity. I don't think there is a need to go on. If you want to learn more about what Multiple Sclerosis is, don't expect me to explain. You can check out MS Australia. About.com is also quite comprehensive. Click here to travel direct with no stopovers. Perhaps make yourself a tea, coffee or cold drink upon arrival.
I actually felt okay at the time. I felt calm. I felt like I had accepted the news. I knew that at some point it would sink in properly. But at the time, then and there, I felt fine. Absolutely fine.
I stepped out of the hospital and I called my mum as I walked to my car.
Thursday, 9 February 2012
Neuro - MRI - Neuro
Neurologist. Do you think that word is frightening? I definitely did. This meant that something was wrong with my brain/spinal cord.
My referral from the ER Irish doc was swimming in a massive pile of referrals and I was to wait patiently for an appointment. I waited about a week before I got a call from the neurologist himself, asking if I could make it that day to come and see him. I left work abruptly and went to the hospital for my last minute appointment.
My personal highlight was that I hadn't weighed myself for a while (a few days) and I was weighed before I saw him but the nurse chick. YES! I have lost more weight. High fives.
Now, details of the appointment itself are much like the ones I had with doddle head doc and Irish. Poking. Prodding. Balance. Reflexes. And so on. Explaining my weirdo sensations. Dates of all these things occurring. You get the picture. So after all that stuff, he said that an MRI would be next, because he suspected that the myelin (I won't explain this - soz, but you will have to google it) on my brain/spinal cord might be damaged, which is in turn causing these foreign sensations. And being as naive as I was, I thought to myself, "Oh okay, cool. Then we can just fix it. Pop a few pills and it will all be okay." Yeah, no. In retrospect he basically, then and there, suspected I had MS without saying those two words directly to me...Multiple Sclerosis.
Now if I had remembered the word, 'myelin', I would have googled it as soon as I got home. But the only part of the word I could remember was the 'm'.
So an MRI was booked for about a week later. I got some Valium for the 'scared of small spaces' thing that I have going, and I really just needed it to chill out a bit. You must remember, that I was alone in D-Town. M had just left for O/S the week before and would be gone for months. I am at the top of Australia, with not that many close friends nearby. No family. And the school term/year was almost at its end. It was not an ideal situation to be dealing with 'what ifs' alone.
I was keeping M and family, and some close friends informed. My bestie Kirby (K - I miss you) made me feel calmer. "It will be something so boring like a stupid pinched nerve", she said. Oh man. I really hoped that that was what it was. But unfortunately, as some of you may have figured out, positive thinking does not always work. At least, not when it comes to medical things. Although I know people might disagree, but, well, I won't go there.
By this time, I had real hardcore tingling numb feelings in my left pinky that went up my arm ending at my elbow (I still have that today - just not as intense). The right part of my back felt odd too. Numb, but no tingles. I would put roll-on deodorant on and it felt colder under my right arm than my left. Shaving my legs felt odd too! Left knee was still a bit floppy. And I was still praising the invention of handrails along side stair cases.
The MRI was fine. I got a cab to and from the hospital as I was advised not to drive while under the influence of Valium. Fair enough. While I was getting the MRI, I imagined that I was listening to dance music.
A week later, or there abouts, I went to see the neurologist for the 'results' of my MRI. Pooing pants. Very nervous. What ifs were going off in my head. But on the same note, I just wanted to know what the hell was up. Knowledge is power, right?
Blah blah. Small talk. Yadda yadda.
The neuro put the scans of my brain up on the computer screen. Eww. I don't like this. But at least I know I have one, right? It was a bit blurry. AGAIN Sascha. Stop. YOU are NOT a medical professional. Fumbling words were falling from neuro's mouth. "These are images of your brain as if it were being sliced blah blah". Yeah okay, I get spatial shit - I am an Art Teacher! But just don't tell me you need to actually slice at my brain though, alright? He was so slow to tell me things. Well, that's how it felt. Then he said, "It was what I suspected. The fatty tissue, myelin is damaged. This means it's Multiple Sclerosis. Have you heard of Multiple Sclerosis?".
I said, "The MS Readathon, yes" (followed by a nervous laugh).
My referral from the ER Irish doc was swimming in a massive pile of referrals and I was to wait patiently for an appointment. I waited about a week before I got a call from the neurologist himself, asking if I could make it that day to come and see him. I left work abruptly and went to the hospital for my last minute appointment.
My personal highlight was that I hadn't weighed myself for a while (a few days) and I was weighed before I saw him but the nurse chick. YES! I have lost more weight. High fives.
Now, details of the appointment itself are much like the ones I had with doddle head doc and Irish. Poking. Prodding. Balance. Reflexes. And so on. Explaining my weirdo sensations. Dates of all these things occurring. You get the picture. So after all that stuff, he said that an MRI would be next, because he suspected that the myelin (I won't explain this - soz, but you will have to google it) on my brain/spinal cord might be damaged, which is in turn causing these foreign sensations. And being as naive as I was, I thought to myself, "Oh okay, cool. Then we can just fix it. Pop a few pills and it will all be okay." Yeah, no. In retrospect he basically, then and there, suspected I had MS without saying those two words directly to me...Multiple Sclerosis.
Now if I had remembered the word, 'myelin', I would have googled it as soon as I got home. But the only part of the word I could remember was the 'm'.
So an MRI was booked for about a week later. I got some Valium for the 'scared of small spaces' thing that I have going, and I really just needed it to chill out a bit. You must remember, that I was alone in D-Town. M had just left for O/S the week before and would be gone for months. I am at the top of Australia, with not that many close friends nearby. No family. And the school term/year was almost at its end. It was not an ideal situation to be dealing with 'what ifs' alone.
I was keeping M and family, and some close friends informed. My bestie Kirby (K - I miss you) made me feel calmer. "It will be something so boring like a stupid pinched nerve", she said. Oh man. I really hoped that that was what it was. But unfortunately, as some of you may have figured out, positive thinking does not always work. At least, not when it comes to medical things. Although I know people might disagree, but, well, I won't go there.
By this time, I had real hardcore tingling numb feelings in my left pinky that went up my arm ending at my elbow (I still have that today - just not as intense). The right part of my back felt odd too. Numb, but no tingles. I would put roll-on deodorant on and it felt colder under my right arm than my left. Shaving my legs felt odd too! Left knee was still a bit floppy. And I was still praising the invention of handrails along side stair cases.
The MRI was fine. I got a cab to and from the hospital as I was advised not to drive while under the influence of Valium. Fair enough. While I was getting the MRI, I imagined that I was listening to dance music.
A week later, or there abouts, I went to see the neurologist for the 'results' of my MRI. Pooing pants. Very nervous. What ifs were going off in my head. But on the same note, I just wanted to know what the hell was up. Knowledge is power, right?
Blah blah. Small talk. Yadda yadda.
The neuro put the scans of my brain up on the computer screen. Eww. I don't like this. But at least I know I have one, right? It was a bit blurry. AGAIN Sascha. Stop. YOU are NOT a medical professional. Fumbling words were falling from neuro's mouth. "These are images of your brain as if it were being sliced blah blah". Yeah okay, I get spatial shit - I am an Art Teacher! But just don't tell me you need to actually slice at my brain though, alright? He was so slow to tell me things. Well, that's how it felt. Then he said, "It was what I suspected. The fatty tissue, myelin is damaged. This means it's Multiple Sclerosis. Have you heard of Multiple Sclerosis?".
I said, "The MS Readathon, yes" (followed by a nervous laugh).
Wednesday, 8 February 2012
Seeing the doctor, followed by attempts at self-diagnosis
So I returned to work. I returned with a funny walk. The tingling in my right calf and now toes, got worse.
Stairs weren't a struggle, but it was the first time where I really valued a hand rail. I needed to use it for going both up and down. I wasn't too worried about how I looked. I just thought that people would assume I had some kind of sporting injury - pft! Those people don't know me. Sascha and sport? No.
I continued going to the gym. Without going into too much detail about my exercise regime, my fave machines were the treadmill (no running though) and bike. After a while on the treadmill, I could feel my left foot start to feel like my right. Tingles, pins and needles. It felt uncomfortable more than painful. Then my stupido left knee started to kind of flop? Flop. Yes. It got weak. I wasn't about to fall into a heap, but it was enough to make me decide to head to the bike earlier than I normally would. I got on the bike and the knee coped and I put up with the tingles. But then I got off and I really had trouble walking.
After a few minutes, it was all good again and my walking went back to just being uncomfortable, no longer uncomfortable and yukky. I now have learnt that this happens when you have MS. Exercise can exacerbate symptoms temporarily, but there is no further damage being done. But exercise is highly recommended.
By now, it was time to visit the quack. Quack? I never use that word. It was time to see a doctor. I was willing to see anyone. So I saw this dude. I told him about everything that had been happening. I told him I had been on 4 domestic flights over a two week period. DVT? The 'advice', and I use that term very loosely, was to head to emergency at the hospital and get this blood test to find out if I was likely to have a blood clot somewhere. Great. What a waste of time. For not just me (an hour and a bit waiting - not too bad?), but hello, in emergency for a blood test? C'mon! He also sent me to get an ultrasound on my right leg.
When it was my turn in emergency, the doc on duty told me that if the blood test comes back negative it's pretty good (obviously) and accurate. But if it comes back positive, it's not exactly reliable. Um right. It came back negative. The ultra sound also came back negative.
I went to the gym a few times before I started to do what we have all done...attempt to self-diagnose. Damn you google and your vast amounts of information!
Stroke. I am going to have a stroke. Even a colleague who had a stroke not long ago said he felt tingling before his stroke. Shit. I am 29 and I am going to have a stroke. But the tests? They came back negative and the ultrasound too. No Sascha. Stop it. You have a double degree in FINE ART and TEACHING. These are very unrelated to medicine. OK. However, I did start to take aspirin everyday, JIC.
So this doctor, when I went back for the 'negative' ultrasound results, did some poking and prodding at my legs. A few reflex thingies. And boy, were my reflexes flexing like Arnie did in the old days. They were fast! STILL I got no answers. There was NO comfort. I was NOT put at ease. I think, and someone else has said this to me before, that if you walk out of an appointment with a medical professional, you should feel some relief, or positivity, or have a better understanding, than when you first walked in. This was not the case with old mate quacky doodle head.
A few days later, I went back to old mate. I was concerned. Nothing had changed, physically or mentally. I was really starting to get very paranoid. You should have seen the look on his face when he saw me again. It was the third time in 5 days I had seen him. He must've thought I was some crazy hypochondriac. It was definitely what he was thinking. The face. I can still see it now *Punches the air*
I sat down and told him there was no change, and that now I had tingling in my left hand. "What are you worried about?" How the fuck should I know? Me: ART TEACHER. You: Doctor. He told me it could be stress related. M was about to go away for quite a few months. It was a stressful time, this is true. Old mate told me to wait until M goes. Let things settle (whatever loser), and if it is still bothering me in a week, go, again, to emergency.
M left. It was emotional. I became very in tune with listening to everything my body was doing. It drove me to small bouts of paranoia (self-diagnosis there again). I would lay in bed to TRY and go to sleep and think (still on the 'stroke' bandwagon), "What happens if something happens and I need the hospital or ambulance and, but what if I can't reach my phone and what will happen if I die and but what if!?". Yes. Some of my thoughts at the time. Now sing with me! PPPPParanoia, paranoia, paranoia.
I took myself to emergency a few days after M left. I saw a young Irish (I think. England, Ireland, Scotland, Wales. Inside, outside, inside, scales) doctor. He was lovely. Empathetic. But he did put me in a bed where there was a stinky nappy behind it. I was in the kids sections though. I digress. He poked and prodded, I repeated to him all that I had told old mate quacky doodle head doctor. He checked my balance. Blah blah blah. Watch my finger as I move it. Stand on one foot. Blah blah. BLAH. He left and returned.
"I don't know what's wrong with you". Thank you for your honesty ER doc. Then he said, "I will organise a referral for you to see the neurologist."
Ohhhhh, freak out!
Stairs weren't a struggle, but it was the first time where I really valued a hand rail. I needed to use it for going both up and down. I wasn't too worried about how I looked. I just thought that people would assume I had some kind of sporting injury - pft! Those people don't know me. Sascha and sport? No.
I continued going to the gym. Without going into too much detail about my exercise regime, my fave machines were the treadmill (no running though) and bike. After a while on the treadmill, I could feel my left foot start to feel like my right. Tingles, pins and needles. It felt uncomfortable more than painful. Then my stupido left knee started to kind of flop? Flop. Yes. It got weak. I wasn't about to fall into a heap, but it was enough to make me decide to head to the bike earlier than I normally would. I got on the bike and the knee coped and I put up with the tingles. But then I got off and I really had trouble walking.
After a few minutes, it was all good again and my walking went back to just being uncomfortable, no longer uncomfortable and yukky. I now have learnt that this happens when you have MS. Exercise can exacerbate symptoms temporarily, but there is no further damage being done. But exercise is highly recommended.
By now, it was time to visit the quack. Quack? I never use that word. It was time to see a doctor. I was willing to see anyone. So I saw this dude. I told him about everything that had been happening. I told him I had been on 4 domestic flights over a two week period. DVT? The 'advice', and I use that term very loosely, was to head to emergency at the hospital and get this blood test to find out if I was likely to have a blood clot somewhere. Great. What a waste of time. For not just me (an hour and a bit waiting - not too bad?), but hello, in emergency for a blood test? C'mon! He also sent me to get an ultrasound on my right leg.
When it was my turn in emergency, the doc on duty told me that if the blood test comes back negative it's pretty good (obviously) and accurate. But if it comes back positive, it's not exactly reliable. Um right. It came back negative. The ultra sound also came back negative.
I went to the gym a few times before I started to do what we have all done...attempt to self-diagnose. Damn you google and your vast amounts of information!
Stroke. I am going to have a stroke. Even a colleague who had a stroke not long ago said he felt tingling before his stroke. Shit. I am 29 and I am going to have a stroke. But the tests? They came back negative and the ultrasound too. No Sascha. Stop it. You have a double degree in FINE ART and TEACHING. These are very unrelated to medicine. OK. However, I did start to take aspirin everyday, JIC.
So this doctor, when I went back for the 'negative' ultrasound results, did some poking and prodding at my legs. A few reflex thingies. And boy, were my reflexes flexing like Arnie did in the old days. They were fast! STILL I got no answers. There was NO comfort. I was NOT put at ease. I think, and someone else has said this to me before, that if you walk out of an appointment with a medical professional, you should feel some relief, or positivity, or have a better understanding, than when you first walked in. This was not the case with old mate quacky doodle head.
A few days later, I went back to old mate. I was concerned. Nothing had changed, physically or mentally. I was really starting to get very paranoid. You should have seen the look on his face when he saw me again. It was the third time in 5 days I had seen him. He must've thought I was some crazy hypochondriac. It was definitely what he was thinking. The face. I can still see it now *Punches the air*
I sat down and told him there was no change, and that now I had tingling in my left hand. "What are you worried about?" How the fuck should I know? Me: ART TEACHER. You: Doctor. He told me it could be stress related. M was about to go away for quite a few months. It was a stressful time, this is true. Old mate told me to wait until M goes. Let things settle (whatever loser), and if it is still bothering me in a week, go, again, to emergency.
M left. It was emotional. I became very in tune with listening to everything my body was doing. It drove me to small bouts of paranoia (self-diagnosis there again). I would lay in bed to TRY and go to sleep and think (still on the 'stroke' bandwagon), "What happens if something happens and I need the hospital or ambulance and, but what if I can't reach my phone and what will happen if I die and but what if!?". Yes. Some of my thoughts at the time. Now sing with me! PPPPParanoia, paranoia, paranoia.
I took myself to emergency a few days after M left. I saw a young Irish (I think. England, Ireland, Scotland, Wales. Inside, outside, inside, scales) doctor. He was lovely. Empathetic. But he did put me in a bed where there was a stinky nappy behind it. I was in the kids sections though. I digress. He poked and prodded, I repeated to him all that I had told old mate quacky doodle head doctor. He checked my balance. Blah blah blah. Watch my finger as I move it. Stand on one foot. Blah blah. BLAH. He left and returned.
"I don't know what's wrong with you". Thank you for your honesty ER doc. Then he said, "I will organise a referral for you to see the neurologist."
Ohhhhh, freak out!
Tuesday, 7 February 2012
Intro and the beginning
The self-indulgent idea of writing a blog about my (so far) experiences with MS was inspired by a friend (who also has a chronic illness) who writes a blog, in conjunction with my personal experience of reading other MS related blogs, and realising that none of the MS blogs I have read (so far), reflect my own experiences.
I also see it acting as a bit of self-therapy. You know, a place where I can harp on and get it all out. More importantly, it is a way for my friends and family to try to understand - because quite frankly being asked, "How is your MS?" or more subtly, "How are you feeling?" just annoys me and reminds me, and I already have other things that annoy and remind...there is room for no more! No but really, I hope that this might give friends and family some insight. And because it's just M and I 'up here' in our current location, keeping regular contact can be difficult.
I do find writing (typing) stuff can be easier than talking. If any of my friends, family and even colleagues have recieved an email from me, they will know that I like to, let's say, over explain....go into a lot of irrelevant detail, go on and on. I do apologise. I, myself, do not enjoy reading. I prefer books with pictures hence my chosen profession of an art teacher.
I will also apologise in advance for any typos - these may also be spelling errors in disguise, but try to give me the benefit of the doubt won't you?
The way I see this blog unfolding, is by writing a few blogs that kinda go back in time a little, from when I felt the first symptoms of MS. I can't predict how many posts that will take, but I figure in smaller (hmm I don't know if I can call this first blog 'small', but anyway...) increments you might be likely to come back, check it out and relive a small journey I took from the end of 2010 to the beginning of 2011, then now. I will aim to be humourous and avoid sadness, I promise.
Okay, so let's begin...(oh and I like that second voice I sometimes have in my writing where I do some more over explaining in brackets :-))
At the end of September 2010 my leg felt funny. Yup. That's what I would say to M (aka Mark, my amazing man). It did feel funny. My right leg was pins and needle-ish.
I had just started about a month or so beforehand to try and lose some extra kgs, so I was going to the gym a few times a week (which included me doing weights). So, as you do, you try and guess why. Retrace your steps. Oh yes, the gym! I must've done something. Yup. That's it. The feelings hung around, and my walk was a bit weird, but I could still manage. Then I thought that no it couldn't be the gym. The feelings weren't muscle related, and my joints were fine.
Maybe it was because I was training in a friend's pair of heels for an upcoming wedding interstate? No joke. If you know me, you know I am an anti-high heeler. Thongs. Flats. Flat boots. But NEVER heels. These training sessions could be the culprit.
M and I were doing a spot of shopping in an outside shopping mall interstate, when the feelings just got too weird and walking was feeling really odd. So we sat down for a bit. I massaged my right calf thinking that would ease these weird pins and needle sensations. It did not. But it seemed to subside after a small sit down so we got up and continued on.
M and I went to the wedding and I did wear an awesome pair of Tilly Rose wedges that I (well, M) purchased. They were far from 'comfortable', BUT I could walk in them and I didn't think they looked strange on me, and going by my small history of high heel wearing this was an achievement.
The heels! That must be it. The heels in combo with something I did at the gym (even though I was earlier in denial about the gym scenario) is the reason I have pins and needles. Um, no Sascha.
So we arrive back from our little interstate jaunt and I demand that M massage my damn calf muscle and get these stupid and weird feelings far away from me! He kindly does so but alas, it did not work.
Boo (Or boo hoo).
I also see it acting as a bit of self-therapy. You know, a place where I can harp on and get it all out. More importantly, it is a way for my friends and family to try to understand - because quite frankly being asked, "How is your MS?" or more subtly, "How are you feeling?" just annoys me and reminds me, and I already have other things that annoy and remind...there is room for no more! No but really, I hope that this might give friends and family some insight. And because it's just M and I 'up here' in our current location, keeping regular contact can be difficult.
I do find writing (typing) stuff can be easier than talking. If any of my friends, family and even colleagues have recieved an email from me, they will know that I like to, let's say, over explain....go into a lot of irrelevant detail, go on and on. I do apologise. I, myself, do not enjoy reading. I prefer books with pictures hence my chosen profession of an art teacher.
I will also apologise in advance for any typos - these may also be spelling errors in disguise, but try to give me the benefit of the doubt won't you?
The way I see this blog unfolding, is by writing a few blogs that kinda go back in time a little, from when I felt the first symptoms of MS. I can't predict how many posts that will take, but I figure in smaller (hmm I don't know if I can call this first blog 'small', but anyway...) increments you might be likely to come back, check it out and relive a small journey I took from the end of 2010 to the beginning of 2011, then now. I will aim to be humourous and avoid sadness, I promise.
Okay, so let's begin...(oh and I like that second voice I sometimes have in my writing where I do some more over explaining in brackets :-))
At the end of September 2010 my leg felt funny. Yup. That's what I would say to M (aka Mark, my amazing man). It did feel funny. My right leg was pins and needle-ish.
I had just started about a month or so beforehand to try and lose some extra kgs, so I was going to the gym a few times a week (which included me doing weights). So, as you do, you try and guess why. Retrace your steps. Oh yes, the gym! I must've done something. Yup. That's it. The feelings hung around, and my walk was a bit weird, but I could still manage. Then I thought that no it couldn't be the gym. The feelings weren't muscle related, and my joints were fine.
Maybe it was because I was training in a friend's pair of heels for an upcoming wedding interstate? No joke. If you know me, you know I am an anti-high heeler. Thongs. Flats. Flat boots. But NEVER heels. These training sessions could be the culprit.
M and I were doing a spot of shopping in an outside shopping mall interstate, when the feelings just got too weird and walking was feeling really odd. So we sat down for a bit. I massaged my right calf thinking that would ease these weird pins and needle sensations. It did not. But it seemed to subside after a small sit down so we got up and continued on.
M and I went to the wedding and I did wear an awesome pair of Tilly Rose wedges that I (well, M) purchased. They were far from 'comfortable', BUT I could walk in them and I didn't think they looked strange on me, and going by my small history of high heel wearing this was an achievement.
The heels! That must be it. The heels in combo with something I did at the gym (even though I was earlier in denial about the gym scenario) is the reason I have pins and needles. Um, no Sascha.
So we arrive back from our little interstate jaunt and I demand that M massage my damn calf muscle and get these stupid and weird feelings far away from me! He kindly does so but alas, it did not work.
Boo (Or boo hoo).
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