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!