It’s now four weeks since I finished treatment and got out of hospital. It felt that now was a good time for another update on how things are progressing. This week I’ve had my first of (at least) 60 blood tests. I say ‘at least’ … Continue reading Lemtrada – 4 weeks on
I’m an avid follower of Coronation Street. I’ve watched it on and off over the years but I would definitely say I’m in my most devoted phase to it ever at the moment. I just got so caught up in the Pat Phelan storyline!
But something has annoyed me.
In June last year, not long before I found out I might have MS, they decided that one of their characters, Johnny Connor, was to be diagnosed with relapsing remitting MS. The same as me.
For those of you that follow Corrie, you’ll know that Johnny has had a tough old time of it recently. His son took his own life, his poor wife couldn’t do right for doing wrong and it was clear their relationship was at breaking point from the stress of it all. His family business was left to someone outside of the family in the will. Then if life couldn’t get any worse, his son’s ex gave birth to a daughter who she gave away to her half sister’s sister. Or something like that. Anyway, Johnny now knows the identity of said baby and is trying to fight for custody of her and is apparently ***SPOILER ALERT*** going to kidnap said baby imminently. Oh and there’s still the tiniest chance that the baby isn’t even his grand daughter.
Are you still with me?
Anyway. Although I’ve said time and time again, MS affects us all differently, I can more or less say with confidence that the vast majority of MSers would not go through his level of stress without experience of a flare up of symptoms, or a full-scale relapse.
Now I don’t really want poor old Johnny to have a relapse. I wouldn’t wish that on anyone. But what I do want is for Corrie to have the decency to portray an already misunderstood illness with a touch more accuracy. It seems to me that Jenny (his wife), who at the first sniff of him getting stressed, dramatically shrieks at him to “calm down Johnny, you’ve got Multiple Sclerosis”, is the only person that remembers that he’s got it!
I did ask in a group on Facebook with other MSers their thoughts on this. I got quite a big response from people who had been wondering the same thing for weeks. A couple have suggested that they normally relapse after the stressful event, but my argument to that is that the first stressful event was the unexpected loss of his son. Which was weeks ago. Surely by now we’d be seeing some fallout from that?
It will be interesting to see what happens to Johnny in the coming weeks – he may be one of those that can hold it together through the stress, and then will fall apart once he doesn’t need to hold it together anymore. Or maybe it will just get forgotten.
Johnny could be somebody who has really inactive MS. Some people have it but it’s years between relapses. My question is, what are they (Corrie) trying to achieve? If it’s an awareness of the illness, although it’s useful to be aware that some people are diagnosed with MS and it never really (or very rarely) resurfaces, I feel that right now it’s not the right balance. If you want to tackle an invisible illness, you need to give it a bit more than somebody reminding the character, and viewers what he suffers with just because he’s got a bit stressed.
In my view, soaps are in a unique position and have a social responsibility to portray these issues. I just wish they’d do it accurately.
I’d be interested to hear the thoughts of others with RRMS on this one! We’re all different so it’s always good to get another perspective!
It has become abundantly clear today that I have overdone it over the past couple of days. I’m exhausted. My legs are like jelly and I need match sticks for my eyes. It’s no concern, I generally feel ok and as usual I’m in a … Continue reading Happy 70th Birthday, NHS
Lots of people have asked me questions like, “how do you know if this treatment has worked” and “what happens next?” All fair questions. What the hell does happen next? Well for the next three weeks I continue to take it easy and carry on … Continue reading Lemtrada: What next?
A little while back, I said I’d talk about what “spoon theory” or the term “spoonies” means. I’m not keen on the label, but as a theory it goes some way to explaining how people with chronic illnesses that suffer fatigue as a result, can manage their energy levels.
It felt significant to do this today, as it’s taken me twice as long as usual to get ready to go out for a drive with Dave. I’ve been desperate to get out, but actually now I’m ready I just want to go back to sleep!
So spoon theory – imagine that you have 12 spoons, each one representing an equal portion of your energy levels for that day. BUT, if you didn’t sleep well last night, you probably only start with 11 spoons. If you’re unwell or have a cold, you’ve probably only got 8 to start. I’m quite possibly on even less at the moment as I’m “immunosuppressed”.
Every activity in a day uses a spoon, or part of, and in people who suffer with chronic illness related fatigue, more spoons are used to complete the activities. On top of that, it takes longer to replenish the spoons when they run out.
So as an example, on a bad day prior to Lemtrada treatment, I would probably use two or three “spoons” just dragging myself out of bed, stepping in the shower and getting dressed and ready for the day. At the moment, that’s taking up pretty much all of my spoons, but that’s ok – it’s a short term thing.
Sometimes you might “overspend” your spoons for the day. So even with a really good night sleep, you’ll end up with fewer spoons the next day. This might happen if you really don’t want to break an appointment or plan with a friend, or you go on a birthday celebration. You might be short on spoons for a day or two after. If you suffer with fatigue, you’ll know that this will happen, but living your life how you want to, and not how your illness tries to make you live it is usually worth it!
This theory is completely relevant, not just to MSers, but any fatigue related to a chronic illness. It’s so important to remember that just because people look ok, it doesn’t mean that they’re not trying to conserve their spoons!
Yesterday morning, in amongst the euphoria of going home, I crashed. Really crashed. I couldn’t be bothered to put my bra on. Every day I’ve had a routine of having a shower, doing my hair and putting my face on, in the interests of feeling a little more human.
Yesterday, I couldn’t care less about feeling human though. I was bloody knackered and just wanted to sleep. I can only liken it to feeling like coming down with the flu. And I don’t just mean a cold. I mean full blown, can’t drag your body out of bed, flu.
I mean, what are these MS warriors people speak of? Cause there ain’t one here! I felt pathetic!
I thought I’d got away with the rash too but I woke up looking like I had hives. Eurax cream, whilst messy was an absolute god send though as it really eased the itching. My nurse had other ideas though and I ended up with the two doses of intravenous piriton, one either side of the Lemtrada infusion.
I kept dozing in my infusion yesterday, I was definitely feeling the effects of not having steroids on Thursday!
Eventually, by 3.30 I was allowed home. Walking through the door at 4.15 was brilliant. I was so pleased to see Poppy and to just sink into an arm chair.
I managed about 2 slices of pizza (despite declaring all I wanted was pizza!) and then fell asleep for about 3 hours. I managed to get up for an hour and catch up on Corrie but then flaked out again at 11 and didn’t wake until about 10 this morning!
Even the little things are exhausting me today. My legs are the bit suffering most. The weakness and exhaustion I feel in them is like nothing I’ve ever experienced.
So I think the Doctor ordered lots of chilling out over the next few weeks, sleeping when I need and generally just taking it slowly.
Even though I do feel awful though, they can’t stop me smiling!
Last night I had a really restless sleep. I know, serves me right for being so cocky about Tuesday night doesn’t it! I was between breaking out in hot sweats and then going freezing all night. My breathing has been a bit shallow too which probably didn’t help either. So I ended up giving in and doing 10 minutes of so on a nebuliser. Must remember that I’m not at home suffering through this. I’m in hospital where they can help! The post nebuliser shakes are awful though. Just weakness like you’d never believe possible.
Feeling sorry for myself this morning
In other news, I no longer need my blood sugar levels testing as I’m no longer on the steroids so that nice alarm clock has gone.
I woke up with THE RASH this morning but that calmed down with my anti-histamines. It’s resurfaced again but I’m going for the “resist the scratch” method of medicating and so far so good.
Nebuliser and a real flush!
On top of all of that I was feeling epically sorry for myself this morning as I learned about “steroid crash”. I couldn’t bloody stop crying could I?
Oh and we can chuck some heartburn in for good measure, yeah?
Ahahh well. We go on! One more infusion to go.
Oddly the time has been flying. I’ve had a steady flow of visitors who have all come bearing food and something to talk about other than infusions and whether I’ve opened my bowels today (no joke, they ask about this probably close to 5 times a day!)
We can only laugh+