Ah, those three little words.
The uncompleted tasks and treasures of today hang on those words. Like a carrot on a stick, they lure me into the future by promising me what the now can't deliver.
Tomorrow I will…
They may just be three little words but to me they mean the world because within them they hold hope, hope that tomorrow the pain will be better, that I'll manage that walk, hope that I'll finish that painting I've been too sore to work on. Hope is my fuel and it drives me through the tough days.
There are never any guarantees with MS. I always have several back-up plans because I can often wake from a fitful sleep to find my pain has soared or my mobility has plummeted. I think that's the hardest thing about this disease, trying to grasp its ever-changing mood and adapt when the goalposts change daily, hourly even. To future-proof myself and how erratic my MS can be, you will always find a wheelchair in my car boot, or if you see me without a walking stick, there is always one folded up in my handbag, because if there's one thing I don't want this disease to take any more of, it’s my freedom.
There's a real stigma around using a wheelchair though, and it doesn't do us any favours. I don't know how many times I've heard the word wheelchair used in an almost-end-of-the-road context where MS in concerned. And when we use it that way I don’t think we realise how much that ostracises those of us using wheelchairs, as if our MS is this separate disease - the worst-case scenario. Because of this I ended up in one of the loneliest places of my life because I had no idea that someone with relapsing-remitting MS may need a wheelchair and that using one is often just the sign of an unlucky relapse - a badly placed spinal lesion in my case - and not always a sign of progression.
A negative attitude towards the wheelchair is a society-wide issue really. Every time I find myself unable to enter a building, it feels like society screaming at me to go home, to not bother. But using a wheelchair is NOT the worst thing that MS can do to you and if accepting its help is the difference between leaving the house or not, if it means you can board your flight and start your holiday without extreme fatigue, is it not worth it? If I’ve learned one thing it’s that my wheelchair only ever enables me, it’s the badly designed country we live in and the stares of people who aren’t used to seeing enough wheelchairs in their daily lives for that exact reason that disables me.
The chronic pain I’ve developed with this disease is what I struggle most with and I’m so tired of popping pills to keep the beast at bay. I plan my tomorrow always mindful of that. Even now I’m writing this from the couch in fits and bursts after a dreadful night’s sleep, willing my painkillers to kick in. But this is where plan D comes in, this is where I snuggle up on the sofa with my husband and our little dog Trixie and our day bursts to the brim with love.
It can be easy to spiral when you have to cancel plans and it’s only natural to be disappointed. However, I try to find a few things to be grateful for in each day no matter how tough they are. In doing so it bathes the day in a more positive glow
The art of seizing tomorrow lies in listening to your body. This is a skill and in the early days I found a symptom diary helped me learn my triggers. I also find studying my calendar for the week ahead helps me keep things in check. I often open it on a Monday and start crossing out things I know will tip me over - and the people who matter always understand.
So if there’s one piece of advice I can offer anyone with MS it’s that - learn the art of listening to your body.
For me, my wheelchair has become my safety net because no matter how bad I feel, I always know that I can say “Tomorrow I will”, and that’s a beautiful thing.