Is pain a journey?

I say 'hello', in pain. In post-UPPP tonsillectomy pain.

The surgery for my floppy palate is done and dusted. I am now at day 12 since the surgery (which was text book) and I am still in a lot of pain :-(

I thought I was so prepared! I mean, I was prepared in that I had all the pain relief ready, a humidifier, organised a good time to have it down so as to not interfere with work too much, M had time off to take me there, pick me up and care for me, a Netflix list. But, nothing prepared me for the severe pain to come!

Wednesday June 27th...
The whole experience at Stirling Hospital was amazing. It's a small hospital so you get that personalised experience, which was lovely. I was checked in at 10:30 and in surgery by 12:20 or so. I spoke with the anaesthetist who gave me a little something something to calm me beforehand (coz y'know, anxiety that I won't wake up!). He took care in finding a vein that would cooperate (not like last surgery!). My surgeon saw me after and was really pleased with how it all went down. I ate food, and it was nice (yeah, that's right, the hospital food was nice!). I had a shot Fentanyl and was on Endone regularly to help with the pain.

When the nurse said she was giving me Fentanyl I immediately thought of some doco I watched about people using it recreationally. To be honest, I don't know what it did...oh well.

From Thursday June 28th...
After being home a few days, things were setting in as expected. I knew the pain would increase. So I took the Endone as prescribed...2 every 3 hours as required. AS REQUIRED.

When M called about getting a repeat (because I struggled to speak), there was a bit of shock that I had taken so many. It was viewed as a bit unusual. In my mind, the Endone was doing fuck all. But it's all I had. I started taking some meds with codeine...not sure that did anything more either. So yeah, it WAS usual. I was not getting the pain relief I needed. Swallowing to just stay hydrated was challenging to say the least.

Tuesday July 3rd...
Fuck this. I am NOT in a  good way.
I email the offices of my ENT. M comes home to take me in. I am in tears, in pain.
ENT informs the ENT on duty at Flinders that I am coming in and wants me admitted to get my pain under control so I can keep fluids up myself.
I turn up to emergency and I am in a little space talking to nurses etc.
They're not picking up what I am putting down, asking me if i can drink water so I can have some Oxycodone (aka Endone) for pain relief. WTF PEOPLE? NO. I CANNOT SWALLOW. THE ENDONE DON'T WORK. THIS IS WHY I AM HERE. HOOK ME UP WITH SOME SALINE AND INJECT ME WITH PAIN RELIEF.
So eventually, I am given a topical throat numbing gel to gargle.
A shot of Fentanyl.
Then 2 doctors trying to locate a vein (haha, that was heaps fun considering I haven't been able to swallow and keep hydrated) on either arm. The ENT on duty wins that race. I tell the other doc, 'good try'. Not sure my humour was appreciated. Whoops.
Then I am on a drip and waiting to be taken to Flinders Private. Waiting...and waiting. Eavesdropping on other emergency patients.
Finally a women turns up. Pops me in a wheelchair and I am transferred to Flinders Private where I have the same fucking conversation about how Endone has been doing SWEET FA.
At about 5pm, I was administered a shot of morphine. Hallelujah! My voice has been heard.
Finally, I was able to swallow without any fear of crying and dying from pain. I ate. It was marvellous. I got a brief reminder of what it felt like to feel 'normal'.

Wednesday July 4th...
Once the morphine wore off, it was back to Endone. I was given some Endone at about 4:30am...the darling nurse Sue actually cared. She checked in with me about 30 mins later to see how the Endone was going. Again, nothing. She was right onto it - bloody legend. I got another shot of morphine which, again, left me in a welcomed daze of normalcy.
Once breakfast was served (which I didn't touch), it was decided that I needed to stay another night. This was absolutely A-okay with me. I was in the best place for my situation and my anxiety.
It was recommended that I chew gum...can someone bring me some gum? Oh yeah sure *eye roll* I thought I would take the nurse up on this suggestion and asked my mother-in-law to pop in with some gum and deodorant. Which she did. I tried to chew gum. Holy hell. That was not a good move. I could barely move my tongue. It was a terrible idea! Even as I write this, I struggle to steer custard around my mouth, let alone work with a piece of gum. As a positive, I now have 3 packets of spearmint, 1 strawberry and another bubble something.
During this second night, I was being given Endone every 3 hours. Sleep was difficult.

Thursday July 5th...
The following morning, I was told to stay all day, which I did. And I tried to sleep for the most part but was being woken for administration of meds every few hours. I did get some random minutes of shut eye after asking for earplugs (the old duck next door sounded like she was having a tea party, discussing how she's got $100000 in the bank and $300000 tied up in assets and shares - poor, poor lady).

M picked me up at 5pm and I have since continued with a similar schedule of meds, trying not to take the Endone unless I am realllllly feeling pain, or getting frustrated at getting no relief.

The pain is still there and it's fucked, but I feel it's slowly improving...s l o w l y .  .   .
Here's hoping this surgery has actually been successful and my snoring will be long gone - I won't know for a few weeks yet. I can tell you now, this has been the most physically painful thing I have EVER experienced. Some shared this opinion with me themselves, comparing it to child birth.

The thing is, you're in pain ALL of the time. There is no respite - this is what I struggled with. Even when it wasn't 'as' bad, it was still fucking bad. Sleeping - argh! Waking up - blah! Talking - youch! Crying - Eeeek! Swallowing - Ooowwww! Staring down the pills that need swallowing -*run away*

BTW - My latest MRI shows no changes since my MRI in April last year - YIPPEE! Relief is felt for another year. So I just keep on keeping on with my infusions, which is just super. This is probably the most relevant point of this entire post!

Thanks for reading!

Welcome Autumn!

Autumn Greetings! My most favourite season! Lovely crisp mornings, mild days followed by cooler nights. Love it.

This week is the final week of school for the term. I've almost made it. Quite an accomplishment. It's a challenging place to work but I am surrounded with super awesome staff that have been very supportive and helpful. I've asked a bunch of questions. I've asked the same questions over and over at times. I've made mistakes. I've been sworn at. I've cried (just once). I've met and spoke with all my students' parents/carers (most, more than once!). I've eaten lots of lollies from the lolly jar. I've written many 'to-do' lists.

My infusions have been going well. I've stopped taking Valium before them and I continue to try and drink as much water as I can (when I remember) to help with the cannula insertion, the day before. This is probably the most stressful part of the process! The most recent was not fun.

I usually have my MRI this time of year. I went through my files to try and find the letter that the hospital usually mails me, but I could not find it. I thought I put it in a 'safe place'...you know...the one that you can't remember? So I contacted the MS nurse and she investigated for me and found that I was not in the system for my yearly MRI. It appears she has forwarded a request for one, so I should receive something in the mail soon. I'll definitely be having some Valium for that fun exercise!

Another reason I had emailed the MS nurse was to ask about an unusual auditory issue I was having at the time. I was sleeping and then woke to a bizarre buzzing sensation in my head, in my brain, even. I sat up in bed, in case it was the position I had been sleeping in. However, the sensation continued and I struggled to get back to sleep.

Once I re-woke to my morning alarm, it was still there. I got up and got myself ready for work and noticed that certain high pitched or deep sounds made my face screw up like a cranky bitch. It didn't hurt - it was just unpleasant. The noise of the big fat trucks coming into Woolies (less than a km away as the crow flies) made me cringe. Putting plates away. In fact, I drove to work with no radio or music on!

I got to work and complained to my colleagues. Have a panadol - of course! I had some panadol, but it did sweet FA.

It was Thursday in about week 8, I think. That time of the term where you're past the halfway point, but the end is just too far away to get you excited, and you're just fucking exhausted (more than the usual exhaustion). My throat was hurting but I had no other symptoms. The buzzing continued throughout the day at work. I tentatively booked an appointment for after work on the Friday, to ask about this buzzing brain.

Thursday night I had a shocking sleep. S H O C K I N G. Sore throat. Buzzing. Restless. Worrying. Anxiety. All the fun stuff. I woke up and felt bloody awful. But not sick.

I could not call in sick to work, as I had a parent meeting after recess. I got my shit together and went to work.

"Are you okay?" asks a colleague. Clearly, I looked a bit shit. I spoke with my understanding colleagues (all of who know about my MS), and it was decided that I would leave after the parent meeting. I quickly arranged for this to happen and it was all good.

Went to the GP for an earlier appointment than what I had booked. The buzzing had subsided by this stage. When? I don't know. It was there in the morning and in my parent meeting! Argh. Anyway, I explained the brain buzz and she recommended I contact the MS nurse. I also asked her to check my throat. She said it just looks red and a bit sore but nothing suspicious. I took myself home and I went straight to bed. I slept for about 4 hours. Got up. Ate dinner. Chilled out with the husband, and went to bed at a normal time.

The following day I just rested and slept. It was great. By the late afternoon I felt so much better!

Exhaustion? MS? A quick virus? Who knows?!

Now...my last surgery, it did not fix my snoring. I can definitely breathe better! But the snoring is still there :(

I had a sleep study done in December and I went to the ENT last week to see the results. I did originally get a preliminary result of: NO SLEEP APNOEA. Yay! But wtf am I still snoring?

It's my anatomy. My soft palate is too soft and floppy and vibrates, hence the snoring. Some nights I do not snore. Some nights M hears me from the other room. Unfortunately we have not been sleeping the same bed for a LONG time. And this SUCKS BALLS. I mean we do, but then he moves, or I move. Or he thinks if he shakes the mattress a bit, I will stop? Haha. No darl, that just wakes me too (*whispers 'asshole'*).

Apparently dentists won't make the thing that goes in your mouth to stop your tongue from going back, unless you have sleep apnoea.

So it's a 'social issue'.

I was offered surgery. I accepted.

This means I will be getting my tonsils taken out later in the year. The ENT strongly suggested I ask anyone I know who has had theirs taken out as an adult, before committing. I got on Facie and asked and received lots of very helpful and detailed feedback (thanks to those of you who shared your nightmare stories and the good ones!). It's meant to be PAINFUL. A few had agreed it's worse than childbirth? Boy...am I in for a treat.

I need 2 weeks to recover. My plan is to take some time off from work, but also have the next school holidays off the back of that time, to ensure a solid recovery period. Plus I don't want to interrupt my students and I will have reporting to do too!

Whoa. That was a long post.

Thank you all for reading :)

Back to it!

School's almost back.
I am starting at my NEW school.
I should be super excited with a side of nervous, right?
I am, but...I am fucking sick. Pharyngitis-y type of sick. The GP couldn't quite pinpoint it. All I know is...I have a really sore throat though, and have done since Thursday last week.

Between then and now, I have been across the border to VIC, for the Ballarat Beer Festival.
It was good. I took it easy (though, we went a bit hard the night we arrived, due to excitement). Luckily there were not too many stouts available (my 'go to' beer, no matter the time of year). Instead I was in love with the goses. Stomping Ground's Watermelon Gose was an absolute delight! My pick of the day for sure. One of my Instagram posts was used by a brewery to thank people for coming to their stand...check out 'madsascha' if you want to follow me on Instagram...I post Bowie (our cat), beer and shit that looks good.

Ballarat is a great little place and it would have been nice to spend more time there. I did spend a hell of a lot of time in the A/C. The drive there was about 7 hours, and at a few points, up to 46degrees outside. We slept with the A/C on too, as our room was small and it was difficult to get the airflow flowing.

Now I bloody love the A/C. Boy, do I embrace the stuff. However, not so much when there's a sore throat about. What I am saying is, I think it made me worse.

Unfortunately, I had to cancel my attendance to two really good PDs (Professional Development) this week, because of being sick. So I am pissed off about that. One was with an academic who is a queen in the land of ASD and education and support for families and schools and just full of awesomeness. She is on the spectrum herself and so it would have been a great PD.

I am currently waiting on the test results for the JC Virus - you know, the one I need to get done every 6 months, that gets sent to the Netherlands or something and gives me peace of mind about not getting the rare brain infection, PML, which could potentially leave me several disabled or dead, so that's why I need the valium when I get my infusion...yeah, that one.

Other than these things, I have returned to Pilates and the gym (maybe it's that place that made me sick!?), but of course I need to cease that for the minute while I rest and get the fuck better.

I am super excited about beginning at my new school, I can barely describe it. I am just really inconvenienced by being sick at the moment and it's dampening my mood. But, shit happens, and we move on and get on with it, right? And to think I am about to endeavour on a journey with up to 12 young people, most of which are going through or have been through some kind of trauma...I should really just STFU and stop complaining.

Keep cool kids, things are gonna heat up again this week.