You know when you feel like you have got the hang of this MS malarkey and you simply flit from appointment to appointment confident that you know what’s coming and not really feeling fazed by it anymore? That’s where I’ve been for, I would say, the last 5 years or so. Cue last week. I had a morning booked in at my favourite place – the place I like to go regularly to take time out and chill on a nice comfy bed or armchair and get offered an endless supply of hot drinks (water for me) and biscuits. I get to read my book, do a crossword and chat to the other nice people who have joined me for a morning of relaxing whilst being prodded with needles, inserted with canulas and drip-fed magical medical juice. That’s right, I was booked in for my monthly infusion of Tysabri. As luck would have it I also had a clinic with my neurologist scheduled for later that same day; 2 birds with 1 stone and all that. And so I waltzed into the first of these now familiar waiting rooms, thinking of little else but the hot chocolate I was going to treat myself to between appointments. On leaving the hospital some 4 hours later, however, I was not feeling quite so waltzy. Not since the appointment in which I received my diagnosis have I come out of that place in such a befuddled and overloaded daze…
I had a lot thrown at me in those 4 hours. The first punch came during the pre-infusion check-up with one of the neuro nurses. Nurses come in all shapes and sizes, a bit like people really, some are lovely, friendly and empathetic, others are matter-of-fact, just doing a job, and not really interested. Thankfully on this day I had the pleasure of seeing the topmost nicest nurse that they have on offer. She always delves deeply into how I have been since my last infusion and never makes me feel like she is rushed for time, even though she must surely be. Now, my walking has been fairly atrocious this year, notably getting worse over the summer but not improving with the cooler weather as we had expected and hoped. Using a stick to get around is not terribly uncommon for me, but to be altogether reliant on one and really not being able to manage much walking at all is unusal for the prolonged period of time that it has been. Looking concerned, the nurse proceeded to ask me questions about my walking, the pain and the last time I had a relapse (15 months ago when I lost my hands to numbness).
You know when you can just tell what someone is thinking even though they don’t want to say it? I could see in her eyes exactly what had formed in her mind, she was contemplating Secondary Progessive MS. And she did indeed confirm this when I questioned her. There’ll be several people reading this who may not know what the different levels and stages of MS are so I should quickly explain. Most people, including myself, are first diagnosed with Relapsing Remitting MS, a type of MS characterised by periods of relative calm but punctuated with relapses, or attacks, which can result in any number of symptoms and lasting damage. I’ve always thought it a somewhat misleading name for this type of MS given that there is never really any remission at all; the symptoms are ever present to varying degrees. A lot, though not all, of these people eventually go on to develop Secondary Progressive MS, whereby they tend to stop relapsing and instead fall into a gradual decline of worsening disability… Whether or not it turns out that I am Secondary Progressive is almost irrelevant at this stage, the possibility alone and the worry that comes with that is key to understanding what it is like to live with such an unpredictable illness. Being faced with any new symptom, or relapse or in this case the possibility of a worsening condition is like being diagnosed all over again. All those feelings come back, all those questions… Am I going to be ‘stuck’ in a wheelchair? Will I need around the clock care? Will I still be able to work? Will I be able to look after my own children? The questions are endless, the uncertainty – terrifying. I must have looked scared because the nurse instantly tried to reassure me by saying that ‘progressive’ sounds worse than it is and it would be best to speak with my neuro about it (fortunately I didn’t have much of a wait to see him!).
While still stinging from this first knock my nurse was about to lay another punch to the gut. This time, however, I was ready for it. “I think I should refer you for a wheelchair assessment…” Yep. Music to my ears. At least I thought it would be. Turns out thinking you need a wheelchair and hearing a health professh say you need a wheelchair are very different things. I need one, I know I do, my life is so flippin’ restricted without one, and yet I’m freaking out. I so want a wheelchair but I don’t want a wheelchair. Try getting your head around that! There have been a couple of occasions in the past where a nurse or doctor has told me I should perhaps stop working. I mention this here as a contrast to the wheelchair thing because on those occasions I was just as mortified but I knew they were wrong and I continued to work. There’s no denying, however, that a wheelchair can only enhance my life and that on this occasion I do need to take the advice on board.
My highly anticipated hot chocolate in the cafe turned out to be a pretty miserable affair as I sat alone with my dinosaur mulling over what the nurse had said and trying to get my head around things. It’s not the first time I’ve received such blows of course. These same feelings arose on the day of my diagnosis, the first time I took steroids, the first time I used my crutches, the time I was told I would be starting Tysabri… I’d been here before and I’d be here again. It happened that my neuro appointment would very soon provide another blow.
To be continued…
7 thoughts on “You Gotta Roll With It : Part 1”
I’ve no words.
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Oh Emily, I 110% know what you’re saying. I was already using a wheelchair on diagnosis as my legs had given up the ghost a long time before. But making that decision was the hardest I’d ever made in my life, but by the same time, I was reassured that life would be less restricted if I was to try it.
I did get a chair, a second hand one off eBay. I didn’t feel comfortable going to a wheelchair service when I might bump into other people I’d met at the ms centre with much worse ms than me.
Cut a long story short, the day my chair arrived, I went out on the pavement to play, I strangly felt like a kid with a new skateboard!
Only, I lasted about 1 minute before falling out backwards and cutting my hands and lower back on stones on the pavement. I was determined to carry on, as my legs were pain free, a new experience after 4 years.
I did everything I could in my chair, to the point that I felt so much better in myself, that getting out of it and back onto crutches was daunting and I was completely unstable.
Fast forward 6 years, I still use my chair for distance work, and yes, it makes me seriously independent and u can enjoy life again. Sometimes it’s a hindrance, but I feel free when out and about. You get called a paraympian by kids when you do wheelers or hop off pavements, it makes me feel good.
Good luck with your choices, just be sure to ask for a lightweight chair that easily goes in your car
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Thank you Nick! I will be in touch very soon – sounds like I’m gonna need all the help I can get! xx
Ems, I can totally relate to all of this, & am HAVING to rely on a wheelchair too 😢😢. It’s Nicks spare one, but Debs said on Monday that she thinks that she’s gonna refer me to wheelchair services……I cried, because I knew that she is right, but having to accept it, is a total mind f4ck…. For a long time, my legs have been useless, & I fall down, more than I’m stood upright…😢😢😢.
You know where I am hun, if you wanna have a catch-up 😘😘😘😘
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Man, sounds like we’re going through it all at the same time – we’ve always had very similar symptoms! Deffo see you soon, I haven’t been able to make any of the recent Many Scars meet ups, but it may be nice to meet just you and Nick anyway so we can have a proper talk xx
Emily my heart breaks for you! You are always so brave, but you have every right to be scared and angry – it is so unfair! I wish I could change things – MS you f****** suck!!!!
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It’s not all that bad, I’m feeling much more chipper now I’ve digested things xx