Looking back it should have been obvious, but that’s hindsight for you. It’s multiple sclerosis (MS); it always has been. And, of course, it was obvious to the neurologist when he went through my medical history. However, he did have my MRI scan and an extended period of pain, weakness and other unexplained symptoms to help him come to his conclusion.
I’ve been living with MS since I was 19 without knowing it.
I now know that I’ve been living with MS since I was 19 without knowing it. In fact, I’ve possibly been living with it longer than that, but that’s the first time an MS ‘relapse’ appears in my notes in the form of huge sight loss in my left eye. In the 21 years between that and my formal MS diagnosis I have had:
– three more episodes of left eye sight problems
– three more times
– glandular fever
– chronic fatigue syndrome
– six periods of exhaustion and depression
Now we know that all of this was me living with relapsing remitting MS. Mostly I was fine, but every now and then, often after times of extreme stress, I would have a period of MS symptoms.
For me, the two major things MS has done are attacking my optic nerves and weakness down my left side.
My left eye’s optic nerve is completely dead and my right optic nerve is barely working; I’m officially blind. But it’s not going to stop me, and thanks to technological advances I can still get online and keep up communication through social media and blog to my hearts content.
The left sided weakness started in my wrist years ago, the doctor thought I had carpal tunnel syndrome but it came and went. It then went to my leg and my ankle. My knee would, without warning, collapse. I coped with this with a funky walking stick and after I lost my eye sight which meant I couldn’t drive, a pretty cool mobility scooter.
What makes them really hard to live with is that no one who sees me would know that they’re a part of my daily life, and so there’s little understanding about them.
Weirdly enough, though, the worst things about MS for me are invisible. It’s the pain, constant pins and needles, tinnitus, headaches, dizziness, balance issues, bladder weakness, swallowing difficulties, memory loss and unbelievable fatigue. These come and go and there’s very little predicability about them, although they get worse if I’m tired or stressed. What makes them really hard to live with is that no one who sees me would know that they’re a part of my daily life, and so there’s little understanding about them.
MS will not write the story of my life nor control what I do with that life.
But please don’t think that this post or my blog “MS Calling” are about complaining; because I’m not letting MS beat me. Yes MS may be calling, or even shouting at me, but MS will not write the story of my life nor control what I do with that life. I might be blind but I’m finding new ways every week to keep on living the life of excitement and exploration I always have. I might be unable to walk more than 10 metres but I have a scooter and it gets me around just fine. I might have a headache but the brain will work once the pain killers kick in.
So what do I want you to get from this post and from my blog? That’s simple, there’s two things:
1. MS is not a death sentence – it’s really annoying, it’s a challenge and it will be overcome. So if you ever hear that you or someone know you has MS then know that you’re not alone. There are thousands of us and we are living full lives the best we can.
2. Everyone is fighting a battle you know nothing about so don’t judge anyone without hearing their story. They might be in pain, grieving, stressed anxious, depressed, lonely or terrified but you’ll never know that if you don’t take the time to speak to them. If everyone took that tiny bit of time to get to know people before they judge or criticise them then the world would be a much better place.
MS is not a death sentence
Now there’s a challenge.
This post is just a small part of Emma’s story. To follow her day-to-day life please check out her blog here.