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!
I’m now almost a week past my last infusion and have had some time to reflect on what I wish somebody had told me before going through it. So for anybody who’s thinking about going for Lemtrada, or is anxiously waiting to begin (or just … Continue reading 10 Tips for going through Lemtrada treatment
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+
I’m currently tucking into my favourite meal of the day! 9.30pm tea and toast (obviously accompanied by a blood pressure test and the rest of my tablets!)
Today has been a nice day. I woke up a very happy patient after successfully dropping off to sleep at 10.30 last night and only waking up at 6.15 in time for THAT alarm clock.
Kath has visited today with trashy mags, chocolate and more cordial (I’m getting through it at a ridiculous rate).
Fortunately as I needed a new cannular, she also arrived with a hand for me to crush! As it happened, the nurse on duty, Gincy, was lovely and really quite gentle.
Infusion started earlier again today – at about 1pm so we’re slowly moving forwards with it which is good as we need it nice and early for Friday so I can be discharged at a reasonable time.
After my infusion had finished I received another visitor in the form of Ste, a work colleague and friend for around 10 years. He’s just got back from his dream holiday in Sweden and Denmark so was fab to talk about that, and something other than my blood pressure!
Mostly today has been uneventful though. A little bit of chest tightness but not bad enough fo a nebuliser and I can report that my bladder is stronger with only about 47 trips to the bathroom today!
Tomorrow I stop the steroids. It will be nice for the taste to go, but with the lack of steroids comes a horrendous whole body rash in the vast majority of people!