The purpose of this blog is purely for me to keep a record of my MS journey, I would love to think that other might find it interesting but equally if it's just me using this page as a diary then I'm quite happy with that too. I am about to commence on one heck of a treatment journey that will last 5 years so I thought it was probably a good idea to reflect on what goes on when etc. This is also inspired by another blog I've been reading by a fellow MS warrior woman who has had the same treatment that I will soon be starting. Read her blog here - Tracy's Lemtrada Journey
So most of the ramblings on this blog will be about MS, and if you've ever met anyone in the MS community you will know that we LOVE to support each other and we're all desperate to hear stories about treatment/symptoms/progression etc. Why? Because this disease is terrifying and any tiny piece of information that gives us comfort that what we're feeling is actually "normal" is massively important.
A little background on me - My name is Claire, I am rapidly approaching 30, married to my lovely husband Jonny and we live in Oxfordshire with our cat Callie. I currently work 0.6fte as a secondary school music teacher and I repair woodwind instruments part-time for the local music service and various local musicians. I also regularly play clarinet/flute/sax for several musical theatre companies and a few amateur orchestras. Finally I also have several private woodwind pupils because I'm a workaholic and I don't know when to stop! In my small amounts of spare time (that I should spend resting but rarely do) I love to cook (not bake, that's a disaster) grow fruit and veg, make homemade presents/decorations and drink lots of wine. Basically I want to be Barbara from The Good Life - hence the title of this blog! MS and the word good are potentially a bit of an oxymoron and I'm sure during the journey I will certainly not feel that this is a "good life" at times but I do have a very positive outlook and I fully intend to make the most of my situation and to continue to have a "good life".
So that's me - now for the important bit. My MS journey started in November 2016 when I lost all feeling on the left side of my face. It started in my lips and I figured it was just because I was teaching in a FREEZING cold classroom (our school often sits in the "heating is for wimps" mindset). I already have something called Raynauds phenomenon where you lose blood flow to your extremities and they turn white, so I figured it was just something like that.
Funky huh? I love freaking people out with this, "dead fingers" look. It does however, get quite annoying when they start to go numb. And then blue.
Anyway, so I thought very little of the numb lips until it turned into a numb face. I mentioned it in passing to our the office staff at school who are very good at looking after me and pretty much made me ring the doctors there and then. So off I trotted to see the emergency doctor who checked me out, decided it wasn't a stroke or Bell's Palsy and referred me to a neurologist.
The Neurologist appointment wasn't until March (classic waiting times on the NHS!) and I saw a fantastic Neurologist who put me through my paces in a physical examination that felt more like an aerobics session! Lots of "lift this arm up, touch your toes, walk backwards, walk forwards, smile, frown, stop laughing!" It was mad. The facial numbness had only lasted a week so she was rather cross that she hadn't seen me when the actual episode was occurring but NHS waiting lists sadly are what they are.
After the examination she declared almost instantly that I had a wonky face but I had mostly normal responses. I felt a little bit surprised but according to my dear friends and family who are so encouraging all the time and not at all insulting, (ha!) I've apparently been lopsided all my life! Cheers folks. I must admit I spent a good week trying to smile normally and evenly but I looked even more odd than before so I've embraced my lopsidedness and carried on!
Now the next part is where I stupidly delayed my own treatment as I got very confused between what an MRI is and what a CT scan is. The neurologist asked me at the appointment if I would be willing to have an MRI scan, I said "is that the Polo" and she of course said yes. Because to any Doctor, yes an MRI does look like a Polo I suppose. What I should've said was, "is it the super noisy hideous tunnel version of a polo that will send my claustrophic self into a meltdown rather than the nice machine where you can see out the other side?"
So after agreeing to have one of these hideous scans, I realised my mistake via a quick chat with google and luckily got it rescheduled for an open MRI scanner. Lovely, or so I thought...
So normality resumed for several months while I waited for the scan. Then in early July I suddenly lost all feeling in my right shoulder which rapidly extended down to my arm, hand and fingers. I went to A&E straight away this time and had a CT scan (rather pleasant, not scary at all - because it's a polo!) and my first ever canula. The canula was hilarious in itself, I'm not a huge fan of needles and I honestly thought the nurse was just taking a blood test until she slapped a massive plaster on my arm and menacingly announced "that will do, FOR NOW!" I was packed off to the waiting room with Jonny who practically had to hold me down whilst I freaked out about being able to see a tiny plastic capsule of my own blood attached to my arm. Luckily the waiting room was mostly empty but Jonny was in hysterics as my wails of "This is not what I signed up for!" carried on.
The numb arm/shoulder/hand lasted 4 weeks in the end and sadly I still have numbness in my hand today (Feb 2018). Luckily it hasn't stopped me playing but it has taken me a while to get used to it, especially as I can't particularly feel pain or temperature in that hand any more.
So fast forward now to August 2017 where after a lovely weekend in the New Forest we arrived home and upon getting out of the car I realised I couldn't feel my knee. I knew it wasn't just numbness from travelling as I tour Europe twice a year both with school and with an orchestra I work for and 24hr coach journeys are the norm for me - 2 hours in a car was nothing. I got Jonny to do a touch test down each leg and realised that I had numbness from the knee to the toes on my left side. By the next morning it had extended to my left armpit.
As a result of episode 3, I had to wave goodbye to any hopes of waiting for an open MRI scan (the waiting list is huge) and had to bite the bullet and have a brain MRI one Sunday and a whole spine MRI the weekend after - God Bless the NHS for working weekends! The MRI scanner was terrifying. I had no sedation as I got confused and thought it was IV but apparently I was meant to request tablets from the doctor, oops. The radiologists however, were lovely and to help with the claustrophobia they let me have Jonny in the room with me as long as he wore ear defenders and didn't get in the way of the scanner. Jonny stroked my hair for the brain scan from one end of the machine and held my hand for the spine one. I listened to him rambling on about carpentry in between the "music" of the machine (very minimalist!) and I prayed my absolute socks off, and survived!
A week later I had THE call from my neurologist who told me very gently that they needed to see me within a week. I asked if they'd found anything and she was kind enough to let me know that it was what they had suspected, I had inflammation show up on both scans. As I am an avid fan of doctor google, which I know isn't great but I like to have a bit of an idea, I sort of knew what that meant.
So in we went to the JR where I met my neurologist and my new MS nurse. When she said the words "It's MS", I must admit I didn't really feel anything. I think perhaps because I knew it was likely to be that. I asked to see the scans and she refused which was a shame but at the time it was probably for the best. I was sent away with a flyer for the MS team and told to take some time to get my head around it and do some research before I told family, work etc.
For once I actually did and I can totally recommend being educated on MS before you utter anything to anyone. I read every website, every leaflet and wacthed every video I could get my hands on. And it paid off! I had several friends get confused with MND and MS and also ME, so I was able to gently explain the differences to them. I also was able to have a fantastic meeting with my headmaster early on where I gave him the MS information for employers document and we had a really honest and open discussion about the future. I asked for a few reasonable adjustments such as a high backed stool for when I was conducting and to have an occupational health appointment at the earliest instance as I wanted to protect myself for the future. In my mind, it was good to see occ. health early while I was mostly well to have that down on my record. The link to the document I gave my Headmaster is below - well worth a read.
MS information for employers
So that is MOSTLY my MS diagnosis in a nutshell. I have left out lots of details about the symptoms I had in between my episodes (I call them this because they were pre-diagnosis so in my mind they don't count as a relapse, although medically they do). But this is already an incredibly long first blog post and I shall save the rest for another day!
Last thing to say today is that I have already been prescribed a treatment for my MS called Lemtrada which will start on the 19th February. More on that and how I chose the treatment later.
Love and hugs,
C x
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