My MS Story

Published June 28, 2021 by joannabolouri

When I was twenty-seven and pregnant, I woke up with double vision in one eye and my left foot began to drag when I walked. I was referred to the hospital where I was given weird plastic prism inserts for my glasses but due to my pregnancy, they couldn’t perform an MRI scan. Armed with a sick line for work, I was sent home and both issues resolved themselves in a few weeks. I went on with being pregnant and laughing about that time I looked a bit like a pirate.

Over the next few years my leg problem would return intermittently. I’d be walking normally, then suddenly my leg would drag, like a reverse, less badass Kaiser Soze. My left thigh developed numbness, my bowels went weird (well, weirder than bowels already are) and I became stupidly tired at the drop of a hat.

I visited several GPs about all these symptoms. Individually they could all be explained away:

Bowels – IBS and some particularly aggressive pushing during labour. Pelvic floor, bitches!

Tiredness – Anaemia.  You bleed a lot. You have endometriosis. We’ll just burn off your womb. No more babies but hey, you’re getting on a bit anyway, weak arse.

My numbness and foot drop – trapped nerve in your back. Do some stretches and stop picking heavy shit up.

All these symptoms combined are worrying, yet not one doctor referred me for further investigation. In fact, I don’t think I saw the same doctor twice.

Three years ago, I had a slipped disc which required surgery. After the surgery my leg problems didn’t go away, and I began to trip and fall more frequently. I remember a particularly spectacular, yet embarrassing public fall outside The Shard, which left me with a hideous black bruise and a real fear that I’d end up on YouTube. Eventually I was offered physio and referred to orthotics for a leg brace. Both the physio and the orthopaedic staff told me that my foot drop was 100% the result of my back surgery and I should pretty much just deal with it. But by then I was leaving the house less and less, due to a fear of falling, cancelling plans due to tiredness and feeling utterly hopeless that I had a leg brace that didn’t stop me tripping. I also had fatigue, so draining, sometimes I physically couldn’t open my eyelids after a nap.

Beyond frustrated,  I called my GP and asked them to refer me to a private specialist and I had my appointment a couple of weeks later. For £250, he examined me, told me he suspected spinal inflammation and that I’d need a brain and spinal MRI, possibly followed by a lumbar puncture. A month later my MRI showed numerous lesions. He informed me I had Multiple Sclerosis. I didn’t need the lumbar puncture; the damage was significant enough that they could diagnose me from the scans.

It’s now 2021 and my daughter is fifteen. That’s almost sixteen years of symptoms and I’m angry that no one listened to me or took the time to look over my records. Yes, I would still have had MS, but I would have been treated sooner. I would have had help and guidance sooner. I might have remained more mobile for longer.

So now I wait to be seen by the specialist MS team, to find out what drugs are available and what (if anything) can be done for my leg. It’s a twelve week wait, so I’ve used that time to arrange my own physio, look into diet and supplements, and rely on Doctor Google to predict possible treatments and outcomes. I don’t advise this.

Emotionally, I have good and bad days. My good days include being proactive and defiant, telling myself that I’ll write and sell enough books to get the best possible treatment and eventually become friends with Selma Blair. My bad days mainly involve me feeling scared, humiliated and worthless.

I want so badly to treat my MS with the bastarding contempt it deserves. I want my MS to be cureable and boring and not something I think about constantly. I also didn’t want to write some heartfelt, woe is me blog, so I’ve thrown in some GIFs to lighten the mood.

My future is a little uncertain now. I am single and the thought of rocking up to dates with a dodgy leg and chronic illness in tow is unthinkable. I imagine that previous partners are now wiping their brows in relief, so how could I possibly expect someone new to take all of this on?

Still, I figure if I can write books and raise a daughter on my own for fifteen years with debilitating symptoms, I can pretty much do anything.

Well, except this

Fuck MS.

2 comments on “My MS Story

  • Wow You are so strong. I have also experienced the double vision and due to a relapse last year had optic neuritis. (Now fully recovered.) I was so scared for so long but finally this past year, I decided to take the leap and publish my short-read memoir so I can help spread MS awareness. The more people are aware, the faster they could potentially receive help. I’m sorry it took so long for the appropriate diagnosis, but I will be sending you only positive thoughts going forward!

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