Nobody tells you when you’re diagnosed with a condition such as MS just what you have to give up. You kind of work on the assumption that, yeah, you probably won’t be running any marathons (although people do!) or whatever but it’s the seemingly little things that really affect you. Or they do me anyway…

After the initial hospital trip with my one working eye I was provided with an appointment with a neurologist. Bearing in mind I still wasn’t really upset/angry/sad/anything at this stage, it was all just ticking boxes, I asked my poor new husband if he’d like to come along (let’s face it, I couldn’t drive myself being that I’m now effectively a fucking cyclops…) which he did. Worth noting here we were both smokers. So off we go, we get shown my MRI which is like a fucking dot-to-dot of lesions in my brain – oh how fun!! Talked through treatment options to manage the condition etc and told I should quit smoking. Well, every doctor tells you that even if you have a bloody ingrown toenail 🙄 so I took it with a pinch of salt. Husband however, did not. He nagged and nagged until I quit on New Year’s Day a few weeks later, like a good old cliché. So nicotine was first to go (with the help of a vape so I wasn’t too fucking awful to be around!) start the list with mildly miserable.

It became apparent fairly quickly after my diagnosis that caffeine exacerbated some of my symptoms so that was the next thing to go. Have you ever given up caffeine? Now, I wasn’t a heavy coffee drinker or anything, couple of cups of tea a day maybe, but get me “out-out” and double vodka & Redbull was my tipple of choice. And a lot of them, I always was a gluttonous bitch. So that all had to go. Fuck me the headache when you give up caffeine is impressive!! Three full weeks of a splitting, pounding head. It was a killer. Also worth noting that one of the most prolific symptoms of MS is fatigue, so I now had no defence against that.

I was now miserable and tired.

The next few years saw me give up more physical things like “walking” my dogs in favour of taking them on my mobility scooter, giving up my role as an Army Reserve as the Army considers MS a disability regardless of your actual level of ability so by default I was out. Medically discharged. I gave up the majority of my volunteer role within a UK charity for English Bulldogs, I couldn’t homecheck potential adopters anymore or collect and transport doggos. Small things like painting my toenails or taking a bath. And now I work solidly from home due to constraints on my actual working environment so I’ve given up seeing anyone from work and the camaraderie of the workplace that I love so much.

So I can now add useless to miserable and tired.

Most recently though the additions to the list have become quite alarming. It’s become glaringly obvious that most types of alcohol make my legs worse the next day – slower, more cumbersome, achy. The only thing that doesn’t affect them too badly is red wine, a distinctly winter drink, so no more pub garden in the summer for a cooling gin or refreshing pint.

That means you can absolutely add pissed off to the list!! Oh, and boring. From life and soul of the party to “designated driver” urgh.

Probably the worst though is the absolute failure of my legs meaning I can no longer drive a standard car. Manual OR auto. I have to have an adapted car with hand controls. I’m grateful that I can still drive but passing my test at 17 was THE single most important thing to me and the independence of having a car and licence meant everything.

So now you can add absolutely FUMING to the list.

And just to add insult to injury my body has decided that too much sugar is just a step too far now, causing actual physical pain. Goodbye to my daily Cadbury Crème Egg… cake, oh how I love cake… sweets, no more bags of Squashies or Haribo… don’t get me wrong, I eat well and get all my fruits and veggies in but FUCK ME SIDEWAYS can’t a girl have one little vice?! And how is it that having quit all these things I’m still a fucking lard ass?!

Sad gets added to the list (I want to say devastated but that seems a bit dramatic…)

So to sum up, having MS also makes you miserable, tired, useless, pissed off, boring, FUMING MAD and a bit sad.

The purpose of this isn’t to be all woe-is-me, boohoo my life is so bad blah blah, it’s just to highlight the fact that having progressive MS is so much more than just “being in a wheelchair” and life has to change in every way imaginable. There are positives too, I’ve always been a pretty stoic, strong individual but the resilience and determination that comes with all this are not to be down-played. My mental strength means I’m almost made of rubber the way I’m able to bounce back from each challenge. I’ve also become more resourceful, although I’m yet to find a suitable chocolate alternative…

I still want to scream “seriously, ANYTHING ELSE?!!?” though. Having written it all down it seems like a bit of a piss take to be honest…