On Wednesday I met with my line manager (who is also a good friend) for coffee to discuss my return to work. I’ve been feeling really anxious about going back. I don’t particularly know why. I’ve had my ups and downs with work over the … Continue reading Return to work
Shift.ms have worked with directors to produce this short film (10 mins ish).
The story is of a girl who is experiencing the hidden symptoms of MS. She’s not diagnosed and the doctors say there’s nothing wrong with her.
Her next door neighbour however is diagnosed with MS, and her son spots the girl struggling and asks his mum to speak with her. Once she knows she has MS she’s able to manage the “beast” that she’s dealing with.
The scene with the stairs is a great visualisation of what it can feel like trying to make it upstairs sometimes, and the struggling with the wrists when the mother is working on her laptop. You also see the mum zone out of the conversation with her son. All of these things really resonated with me.
If you’ve got 10 minutes to spare, it’s definitely worth a watch.
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
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!