Summer is coming ... ... ... again

I realise I did not post since my last post (obvs) and that means that I did not let you know that there were no changes on my MRI scans. Well now you know!

So summer is coming, again. For most people this means:
- being outside
- parties/festivals
- rapid increase in socialising opportunities
- alfresco dining/drinking
- going to the beach
- super fun times!!!

For me, this means:
- constant checking of weather
- inability to commit to anything that is outside
- chasing the air con
- disappointing people
- feeling isolated
- reminding work of my required reasonable adjustments
- being nervous about explaining my limitations
- expensive electricity bill

Yes it is true, I hate summer (but like small bits of it) and it hates me. However, I am grateful that we don't get much humidity here - now that is the killer. One of my last visits to Brissy I completely broke down in tears. I was, literally, a  HOT MESS. Cheers humidity!!!
~ I questioned my existence ~
I wish I knew more people that understood this. Anyone out there?

The weather also makes any (of the ridiculously not enough) exercise I do, even harder. So I tried a Barre Class "based on elements of Ballet Barre and Pilates". Well I have done ballet and pilates. Loved them both! What could go wrong? This sounds perfect for Sascha! Right?
"Hahahaha", oh she laughed.
"Suited to any fitness level" they said!
Get rooted.
I left the second trial class I tried, in tears. My balance, oh how I did not balance! My dodgy knee, oh how its dodgy-ness shone bright! They offered me pilates classes as part of the month trial instead, but I refused as I wanted to do something I can AFFORD, and long term, pilates is not affordable unless you're rich (who is with me?). It was a red hot failure. What was I thinking...I did tell them everything about my limitations and the MS.
F  A  I  L

So then, I looked into adult ballet classes and that is what I am doing. The barre work is great. Love, love, love it. Lots of memories flooding back. (FYI, I did ballet and other dance styles for 10 years, ages 4 to 14). The centre work however, I am appalling. Hello MS! My balance, my knee...they let me down tremendously...people may say "oh but it will help you improve"...sorry but I am not convinced. The thing is, it's not that my body can learn to balance again, it's damaged and that is the hard (sad) truth. If it helped so much, all MSers would be doing ballet, let's be honest here.

In other news. We might be moving.
It is the life I chose and as exciting as it can be, it is a bit sucky that we do not get to live a little more in our home :( BUT WE WILL BE BACK!
There is also the question of work... I was able to speak with my principal who said he was happy to approve Leave Without Pay so I would not lose my permanency. This was a MASSIVE relief.

Some people may struggle with this idea of moving a lot. I quite like it. Change is good. Without all the moving I may never have fallen into the area of teaching that I am now loving so much. Would I have accumulated the same experience in life, love and work? I doubt it. I am actually internally grateful for such opportunities, for it has shaped me, and contributed greatly to my resilience and acceptance of change. Now how's that for a positive outlook mofos?!

When is this all happening? Well here is probably the shittiest part...at this stage, we do not know as it factors in many things, even more so now that the end of year is upon us. I am regretting telling so many people. I thought it was good to be open and honest, but now I am being constantly asked - so please, no more asking. When I know, you'll know. K?

Frida has been mostly a delight, except for when she ate something that made her very sick and cost us an arm and a leg, then escaped the yard and then got mildly ill again, throwing up bits of foil, no doubt consumed in the feral yard of the grubs next door (who have recently moved out - but still left their yard looking like a dump)...*b r e a t h e* but yes, mostly a delight.

Also! Got myself a new set of wheels! Third car in my life, and I am 38. It's fun and a gross colour that is slowly growing on me.

P.S. Still looking to change my blog platform as this one is poo. Suggestions please.

Those invisible symptoms...

Good evening all...

Today is the first day of winter...and my last post was at the start of Autumn.
Frida, the puppy, is...well, she's being a puppy. I have been in tears at times and thank myself regularly for not going down that path of giving birth and having a human baby - sorry, but no fucking thank you. I would defo be a candidate for PND.
So the other day was World MS Day and the 'focus' this year was all about invisible symptoms.

There are many MANY invisible symptoms associated with MS. And the other things is, that many everyday annoyances become our 'new normal', much like other annoying illnesses/diseases/disorders etc. Here is a snippet taken from document aptly named 'But You Look So Good!' (https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-But-You-Look-So-Good.pdf)
But people, this is not the full list! And I would argue that some of these are quite visible - anyone that knows me well would agree with me when I saw my heat sensitivity is not that invisible (the whining, sweating, crying, tantrum-like behaviour, insistent need for AC etc), and that dizziness...sometimes I just have a sober drunk moment...and it usually last a split second. 

Sounds fun huh?

Let us look at ONE symptom, that has many layers...

Let's have a look at another in some more detail...

And one more just for shits and gigs!Thank you to https://mymsaa.org/ms-information/symptoms/ms-symptoms/ for helping a sister out in explaining this stuff

Here is a simplistic list of MY invisible symptoms:

'MS symptoms that are hard to see include fatigue, pain, cognitive problems like memory loss or trouble solving problems, weakness, blurred vision, numbness, prickly or tingling sensations, heat sensitivity, dizziness, balance/coordination problems, and bladder or bowel problems.'

Sexual Dysfunction 

- decreased sexual sensation 

- decreased vaginal lubrication

- decreased libido 

- decreased willingness to attempt to engage in physical sexual activity (due to other physical discomfort)

- limited mobility may result in the inability of the person with MS to maintain certain positions to engage in sexual activity

- spasticity can be painful and result in avoidance of sex

- painful intercourse

- bowel and bladder dysfunction: People with MS who have difficulty controlling their bowels or bladder often avoid intimate contact fearing an embarrassing accident.

- do. I. need. to. continue? I actually could because I have only covered Primary and Secondary Sexual Dysfunction...there is also Tertiary...

Anxiety and Depression 

- PLEASE READ THE ABOVE! In addition to the above, 

- chronic unhappiness

- frequent worry/guilt/feeling out-of-control

- excessive concern with health 

- negative thinking about the future..I will stop there because I am actually getting teary. 

Pain and Numbness

Neurogenic Pain

- Steady dysesthetic pain, which is a burning, tingling, or tightening sensation, usually occurring in the legs and arms, but sometimes in the body; it is the most common chronic pain syndrome; it can be dull, nagging, or have a prickling sensation associated with warmth; it tends to be worse at night and after exercise; it is also aggravated by changes in temperature

Nociceptive Pain

- This type of pain is usually less intense but can be long-lasting. For instance, weakness on one side of the body will cause someone to favour the other side and develop stiff joints; muscles can become twisted and cause the body to be unbalanced, frequently leading to muscle and joint pain 

There's more but you can research yourself if you're feeling brave.

- sexual dysfunction ('but can you be more specific Sascha?' No, I cannot)

- pain (in my knee, and my fucking soul)

- Heat sensitivity 

- bowel and bladder issues (let me just say when I gotta go, I gotta go)

- anxiety (...although...WHO DO YOU KNOW THAT DOES NOT HAVE ANXIETY!?)

- depression (quite recent, and it's all connected to the fucking MS and yes I have had suicidal thoughts, but can confidently say I would never act on them - these tend to rear their ugly head when I am aggravated by the heat/humidity)

- dizziness (at times)

- balance issues (at times)

- limb movements associated with spasticity (yes, I can be a spastic - usually at night in my feet and legs and I get the briefest warning beforehand, but cannot describe the warning)

So yeah. Maybe getting quite real this blog. Giving out some extra info that I have held back in other posts. 

My annual MRI is on Monday and I am fucking petrified that there will be changes. But I can't do a thing. 

My appointment for the MRI are on June 19th, so expect a post them.

Oh and Liberals won the election. Fuckers. Why this nation doesn't care about people and the environment is beyond comprehension.

P.S Frida just came to comfort me (maybe because I was crying a little tiny bit, maybe) 

House, puppy and cat

Well hello there pretties. And hello to AUTUMN! I love you...Autumn that is AND it's Fringe time! So many great things are happening now...but before...oh no, not many great things.

The last time I wrote a post was when I was recovering from surgery. And now it is 8 months later - shit! 8 months... how very slack of me. However, I am happy to report I am no longer in tonsil removal pain and come to think of it, I haven't been 'sick' since having my tonsils out. Fucking great. Well worth it. Maybe. I dunno. Not sure I would recommend it to be honest.

So much has happened...

a) We bought a house.
b) Selma Blair has MS too.
c) I survived 4 or so heatwaves.
d) We got a puppy.
e) Bowie died.

a) Yup. We are home owners (with the bank of course). Not far from the city. Built in the 50s. Wooden floorboards. Double brick. It's small and sweet. Air conditioning in summer costs a fortune, but meh! It's surrounded by some kinda dodgy neighbours. It's bloody great. Love it. No regrets.

b) So what? Well... is it kinda good that MS is getting some attention once again, thanks to a famous person. She currently uses a cane and has trouble with her speech. This has been a reminder for me that I am fucking lucky. I have my 'things' and there are even some things that I do not discuss in my blogs. Some are of a sensitive nature and some I am just not brave enough to share. I have shared with some of you these secret horrors and there are also a few I have told no one - yes, really.

c) Surviving heatwaves is a real motherfucker when you have an intolerance to heat. There are times when you question even existing because there is NOTHING enjoyable a out it. Yes, you read right. I have felt that intensely about this. But I obviously do not act on this...but I start to wonder about the whole 'survival of the fittest'. I don't even understand how I survived. Is that some fucked up thinking or what? Mix this with intense work life and a puppy...and you have a week from hell.

d) The puppy Polly, was then renamed Frida. This is because Polly sounds too similar to Bowie. So Frida it became. She is a cavoodle, supposedly. Mum was a cavoodle, dad a poodle. However, Mum looked more poodle, so really she's a poodle cross at the end of the day. She's gorgeous and HARD FUCKING WORK ALONE. Frida has had visits with Aunty Kathy and Uncle Pete, Aunty Nicola and as I sit here and write this, Aunty Claire and Aunty Alex - I'm hoping they will actually give her back to me tomorrow as I think they are falling in love with her. I did consider re-homing her.
Frida has had me in tears. Daily. Yes, a puppy dog has made me cry, and not from cuteness and happiness (although there has been a bit of this). The NEEDLE teeth though, they hurt and she jumps. I currently have two 20 cent piece bruises on my upper inner thigh from her biting me. This one caused instant tears. The back of my right ankle has in little cuts and scratched all over it, and I have bruises and healing bite marks all around.
M is currently away, so I am trying to manage alone and I have needed help. I am so, so, so very grateful to those of you who have helped me out and shown concern, or listened to me whinge and whine. Thank you so much, from the bottom of my heart.

e) Unfortunately, Bowie is no longer with us. *waterworks* I am devastated and feel sick about it.
During the stupid motherfucking cunt face heatwave, I was trying to keep Bowie inside each day...except on the Tuesday morning, he slipped through. I got a call at lunch that Bowie had entered a neighbour's backyard and was attacked by two dogs. This is all I will say on this matter.

Having Multiple Sclerosis is horrible, especially in summer. The weather in summer runs/ruins my life and also the life of M and all social situations. I HATE it. If I could chase the winters, I would. If I could not work during summer, I would. But I can't do these things. I just need to suck it up - but it sucks so much.

Peace out.