Today’s one of those days that I go off piste with my blog. If you’re a new subscriber who is here for all things MS, it doesn’t happen very often, but sometimes it’s nice to focus on something else 🙂 There’s a theme here where … Continue reading Reading in Heels – May Review
It’s hard to know what to say when someone is diagnosed with something like MS, and even harder to know what to say when they complain about their symptoms which invariably aren’t visible. Even harder still, it depends on who you’re talking to. When met … Continue reading 14 things not to say to someone with MS
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?
Two weeks ago I was sat in hospital (eagerly?) awaiting the start of Round 1 of Lemtrada. Since then, I’ve really not done a lot except for sleep and worry about whether my salad is clean and my meat is properly cooked (more on that in a future blog!)
I didn’t really have an expectation on how I would be feeling after treatment. I knew it wouldn’t be great as I was sent home with a six week sick note, but I’d heard really mixed reviews from other people. Some people were back to work within a week. Others were still struggling six months on. As with everything where MS is concerned, it is in no way predictable.
That first night home, all I really wanted for tea was takeaway pizza. The food in hospital had tasted of next to nothing, so I just wanted my old favourite! I duly ordered pizza with wedges and even treated myself to a dessert. I quickly discovered that there was not a chance I was going to make it through even half my pizza, never mind all the extras. My paranoia about food meant that there was no way I was going to eat it the next day out the fridge, so Dave was delighted to be given my leftovers! Over the subsequent days it has become apparent that Lemtrada has not only taken my white blood cells, but my appetite with it! Oddly enough, one of my biggest worries in hospital had been putting on weight as that’s something I feel I constantly battle with anyway. I’d heard stories of people piling on weight in hospital and in the time after from the steroids, but luckily that hasn’t affected me.
Anyway, I digress, after struggling down a bit of pizza, I fell asleep for three hours. I woke up for an hour to watch Corrie on catch-up, then fell back to sleep for 11 more. Dave was an absolute hero through the weekend, waiting on me more or less hand and foot. He made sure I ate (I was too tired to even think of stuff to eat), and kept nagging me to drink more fluid.
By Sunday, I had a serious case of cabin fever so Dave and I went out for a drive and a trip to my beloved Starbucks! Just getting dressed to go out exhausted me and I was ready to go back to bed again. A bit of fresh air was just what I needed though and I was grateful for a change of scenery.
Since that weekend, the effects of Lemtrada have varied daily. Wednesday through to Saturday were bad days as I had a terrible headache. On reflection, this was probably down to dehydration. The medication is giving me hot and cold sweats for a good few hours after taking it so I’ve come to realise that it’s important that I continue to consume the amount of water that I did in hospital. Yesterday on the other hand was a great day and I made it through the day for the first time without a nap
The biggest impact, aside from feeling shattered has been in my legs. They just feel so heavy. I talked about”elephant legs” in a previous blog post and it feels like that constantly. The first few days after I got out of hospital they were a different kind of weak – likely due to the fact that I’d been laid up in bed for a week with limited movement.
It’s funny, because on the days I feel good, I feel like I could go and smash a session in the gym. Trouble is, just walking up the stairs can make that good day, bad. As long as I sit on my arse reading a book, soaking up the sun or binge watching Grey’s Anatomy, I feel great!
For the most part, they can’t stop me smiling! I’m having a lovely time at the moment recovering with my family down in Essex and will be down until next Sunday. We’ve got a few plans between now and then which include going down to the seafront (my happy place), visiting my Grandparents who have just moved a couple of hours away and catching up with Lucy. Enough to keep me busy. But not too busy!