Even though I have been lucky (I use that term very loosely) enough to see some improvements lately to my balance and general mobility (I’m getting about with just one crutch now – woop woop!) my newly defined ways of doing things and the almost all consuming wondering what is going to happen next, It seems to be one step forward and two steps back, its not the hokey cokey but it feels like it!
I have had to give up so much of my independence, but I try to not dwell on the what ifs but that doesn’t mean that I don’t get pissed off – really PISSED OFF. I’ve become a hermit, tucked away behind our big front door. The world is out there screaming for attention but most days I have to politely decline its invitation. When I do venture out it’s just to hobble round the green with the dog. I must be hilarious to anyone watching as a struggle to master the art of picking up poo and flinging it in the bin with crutch in one hand and dog lead in the other. I wonder if I get points for determination… just a simple 10 minute jaunt and I’m completely pooped – excuse the pun!
The intensity of MS is physically and mentally incapacitating and it means your life will never be the same again. When I can function properly, I grab the chance to do things, see our eldest daughter and the HM, out for lunch etc but there is a heavy price to pay for escaping the binds of MS for a little while! Under guidance from my specialist, I am taking a break from the treatments for a while as my body rejects all tried so far. It’s a risky move but medication and I are not the best of friends and I’m determined to fend them off as long as I can, so the score today is Sarah 1 – medication 0. Big round of applause please…
ANY improvements in the day to day battle are short lived but truly I appreciate each and every accomplishment and milestone I achieve. Simply knowing what MIGHT happen doesn’t mean it will. Trying to navigate all the bullshit that comes with living with a chronic disease is exhausting.
I have found brilliant support groups on Facebook and learned that getting to know others living with the same shitty disease does not mean joining a pity party, as I once incorrectly thought it would be. No my friends it means finding other like minded souls, to share and support one another. I mentioned “going to battle” and have finally realised that having a BAD ASS group of virtual friends, armed with shit loads of knowledge, is the best way to ensure that I win this fight against MS!