I’ve always been partial to a bit of blogging, it started in my twenties when I blogged under a pseudonym for years and then I tried my hand at blogging under my own name, but I just never really enjoyed it as much. So, making the decision to blog about my journey with Multiple Sclerosis has been a tough one. I’m an intensely positive but private person, I still don’t see myself as a “sick” person and live my life to the full and refuse to let this disease ever define me or beat me. But one of the reasons MS doesn’t have a cure, is because it doesn’t get the awareness it should, which ultimately means it doesn’t get the resources it needs, so if I don’t talk about it, then I’m not really helping much am I! I just want to try and use what has been a negative experience to try and create something positive in my own small tiny way…I’ll share some of the big stuff on here which may just open someone’s eyes to what MS is about, or even if it helps one person who is going through similar or knows someone who is, then this feeling sick with nerves feeling, will be worth it…
How it all started….
I’ve always been one of those people who has never really been sick, never worried about my health and always thought “it would never happen to me”. Lived a care free, fast paced little life making the most of every minute, have an amazing family and friends, working hard and just enjoying myself. I should add all of this always done at a 100mph.
So, waking up about a year ago and not being able to walk, sort of scuppered my plans. Yup, I’d somehow gone to sleep after spending the weekend in the lakes and being out for dinner talking about whether my next adventure would be cycling across Cuba or climbing Mount Kilimanjaro…and then 8hrs later I couldn’t even get out of bed. “I’ll just lie here for a bit and I’ll be ok, I might just be a bit late for work”…that was my initial thought. Anyway, after much resistance I ended up in majors of A&E being told there was a chance I could be permanently paralysed. Fast forward a month in hospital, 1 failed operation and a lot of wonderfully strong drugs that made me feel like I was laying on a cloud, I was transferred to the Walton Centre who specialise in neuro surgery. That’s when it all started getting a bit serious.
The amazing team here decided I had to have another spinal operation that would help me get back on my feet, at this stage I’d have agreed to them chopping off my hand or putting me in the middle of a stone circle covered in fish heads and face paints, I was that desperate. I’d literally become “hospitalised”, I had tried every menu option and changed religion daily with the kitchen staff to try the latest halal meal, even the vegan option was alright. My best mates were all aged 70+ and I had a collection of pjs that would rival Primark level 3. I was going insane being stuck in a bed, feeling sick and having my life put on hold. It’s a strange feeling when suddenly you don’t have a handle on things and your health just starts doing its own thang’. Fast forward again to coming out of surgery, and then realising I couldn’t see. Yup, it couldn’t just be straight forward could it, nope I was going blind.
“Oh its just a migraine”…”oh it will just be the aesthetic” they told me…lying there not being able to walk was one thing, but lying there and not being able to see took it to a whole new level of “whattheactualfeck”. After screaming at the surgeon that I couldn’t see, they eventually arranged an emergency appointment with a neuro ophthalmologist. Just to set the scene here, I’m now a permanent wearer of pjs, hair has taken on an unruly scarecrow look of its own, my skin hasn’t seen a drop of fake tan for the first time in years and I couldn’t walk so was stuck in a wheelchair that has the steering ability of an Asda trolley…oh I was also enjoying the effects of morphine, which was keeping a smile on my face…in the space of 6 weeks, I’d lost my independence and I was as frustrated as hell and craving a manicure, sushi and a glass of anything with an alcohol content.
The next few weeks were a bit of a daze, I think I have sort of blocked it out but I’ll try and tell it as close as I can. So the ophthalmologist starts doing tests on my eyes, two hours later after a zillion more tests…he sits down and tells me “you’re going to be permanently blind sorry”. Writes down on a piece of paper why – that I can’t see shall we just point out – and sends me back to the ward. Can you imagine that call I had to make “erm mum, they’ve told me I’m going to blind forever”….and then the worst few weeks of my life began – yup so far it had been a doddle in comparison with what I had coming up….my neuro surgeon then turns up “I don’t think you’re going to be permanently blind, I think it could be a brain tumour, or cancer, we need to scan your brain ASAP”….
I don’t think any of this was actually sinking in, a brain tumour? What? I don’t get sick, this cannot be happening to me. I was surrounded by my family and close friends and everyone was crying. I was just sat there thinking, nah they’ve got this wrong. I’ll be alright in the morning.
So cut another long story short, 6 brain scans later, a zillion other horrible tests, lumbar punctures, wires being put on my head and electric current tests….you name it, I tried it. They also started me on infusion steroids to reduce swelling I had on the brain, these drugs are pretty amazing with what they do, but the side effects are horrendous, I didn’t actually sleep for 4 days straight in one run. They literally mean you can’t turn off. Also lying there googling “what is the chance I’m gonna die with….” Probably didn’t help.
Two weeks I was in limbo for, not knowing if I had a brain tumour, cancer or if my sight would come back….then just after I’ve eaten my 87th jelly and ice cream of the year a nice doctor comes in and sits down and gives me the “I’m about to give you bad news look but I’m going to smile and hope you don’t notice”…
I’ll never forget the next words he said.
“Unfortunately we have found a considerable number of shadows on your brain scan”
“We think your body has started rejecting your brain and is attacking it”
“We have got to do more brain and spinal cord scans”
I was sat there smiling and nodding at him as though he was telling me I’d just got a free pack of prawn crackers for spending over a tenner at the chippy.
A week later, 4 neurosurgeons and 2 neurologists stood around my bed all looking at me as though I was about to pop my clogs and told me they were very sorry but they thought I had Multiple Sclerosis. And that’s pretty much the moment when my life sort of changed for ever and this new chapter began.