The real push to finally write this down started after I took place in a clinical trial last year. Going through all the blood tests etc. was ok but every time they did the ECG there was a concern and my blood pressure was a little high. My BP was easy to sort out with low dose medication but I was referred to cardiology for my slightly damaged (?) heart. After my first appointment with Cardio I received my letter outlining what was discussed but the reference to my ‘partially paralysed’ leg is what totally floored me. I already know that I have an EDSS* score of 6 and it is my leg so I’m well aware of how stiff and awkward it is. The icy cold temperature of my right foot, the swelling and occasional purple toes, terms like spasticity and nerve damage are the norm for me with MS but it had never been put like that before, it totally choked me!
Just to confirm, after just a few tests it was agreed that there’s nothing wrong with my heart. It was just the terminology used by someone outside of my neurology team that freaked me out so much, once again it felt like another loss as MS steals away so very much.
Ever since diagnosis, I’ve been told how well I’m coping and how brave I am but that’s really not the truth of it. Consequently I’ve been struggling to write this blog for weeks, maybe months, it just keeps stumping me. Everyone knows that people don’t like moaners, so there’s a certain amount of just dodging the struggles when you talk about it. Funnily enough I read an article just the other day (link below) about why the chronically ill always smile and when someone asks how we are, we say “yes, I’m good thanks”. The first point I really need to make on this, is that I‘m usually smiling because I’m so pleased to see you, it really is that simple! After reading the article, I’m determined to try to resolve one thing and I hope I can stick with “as well as can be expected” as my response when people ask me how I’m doing. I doubt I’ll get it right all the time but I’ll try. I certainly won’t ever be launching into details of my latest bruise count, seriously, less than three is quite rare for me but I consider it a triumph when there’s no dark ones.
My husband (Rob) also finds this difficult too, he thinks most people really don’t understand what life’s like for us because I look so happy. He urges me to talk to people a little more about the reality of it. I don’t easily open up about the tough stuff, I’m pretty sure nobody really wants to hear it when they see me. So here it is, it’s been four years since I was diagnosed and I still have the odd meltdown, and I do mean meltdown! Sometimes I’m ok for a couple of months, aside from the odd wobbly moments but sometimes the tears are weekly. I can be quite repetitive too because I know how much pressure he’s under because of me, so there’s obviously a certain amount of feeling responsible for someone else’s happiness too.
When I had to stop work, Rob took a local job with the benefits of flexi-time and a 30 minute walk from home, it seemed sensible. He even took the terrible wage so he’d be close by if needed. Aside from a couple of colleagues he really likes, the job is pretty bad and there is no flexi-time etc. for his team. His main challenge daily, is not to lose the plot or his temper! He’s on the lookout for something else though. After a huge amount of aggravation I’m in receipt of the PIP benefit but otherwise I’m not on benefits and my income is taken from my limited pension arrangements, which will run out in the not too distant future. My income is now so low, I don’t even pay tax so that gives you a clue on the changes and Rob’s salary is around the mark of what I was earning in my mid 20’s.
But that’s enough of that, dwelling on it is pretty depressing, so looking to the future! I’ve seen a lot of people setting up crowd-funding pages raising funds to go to Russia, Mexico and other far flung places for HSCT treatment, I’ve been encouraged to do the same. It’s the treatment where your stem cells are harvested and then your immune system is rebooted (killed off) via heavy chemotherapy before your stem cells are returned to you. I just can’t get totally comfortable with the idea of this, for starters, my mobility on its current path, just isn’t likely to hold up to a three year waiting list! And I’ve got the primary progressive type of MS (PPMS) and it seems to be even less proven in terms of how much recovery can be expected for the type. For clarity, I now use a pair of crutches even indoors and sometimes, additionally use a massive elastic band (Musmate) or electric shock treatment (FES) to help shift my feet. With the ataxia, nystagmus, general muscle weakness and wobbliness, I lose my balance quite a lot.
The idea of HSCT terrifies my Mum (and me to a lesser degree) but the idea of going to another country for it, just adds to the scariness methinks. Additionally, it’s not a proven ‘cure’ and most people having the treatment have the relapsing remitting type of MS (RRMS). As my friends and family would confirm, I’m not a quitter, so in the last couple of weeks I’ve got my act together and asked about getting my vision assessed by a Neurologist, I’m also being booked into a clinic to be assessed for Botox in the bad leg and most significantly I’ve put the wheels in motion to ask a London consultant, I’ve seen before if he’ll consider me for HSCT? They’re trialling it for PPMS patients in the UK. Yes, I know trials have been hard at times but it’s actually hard to feel like I have a purpose in life and I’d really like one, moreover this seems like the best way for me to approach HSCT.
This could all be a storm in a teacup as the eligibility for it is quite specific so I may not even qualify but I need to at least try.
I may still ask for some crowd-funding but it’d be for managing my symptoms a little bit better. For example there are two medications I can only obtain privately (Fampridine was about £300pm last time I checked!) the vitamins and supplements like Biotin, high dose vitamin D3, CBD oil - some of which I already buy but can’t afford regularly. My really cheap wheelchair is just not a comfortable place to be, so I need to get something better. A little comfort is really all I want, the potential for the occasional shop at M&S without watching every penny - we’ll see, we’re so used to being independent that it’s a really hard pill to swallow but pride needs to naff off for the sake of some sanity. Onwards and upwards as they say!
*EDSS is the Expanded Disability Status Scale, where 0 = no disability, completely normal & 10 = dead