Category: lemtrada

Autumn is coming.

Reading back my last couple of posts have made me feel really sad. I’ve obviously not been in the greatest place in recent weeks. In spite of the amazing self love summit that I attended which really did leave me buzzing for at least a week after, things just haven’t felt right for me.

Tuesday was a bit of a turning point for me though. I had my second blood test done and it presented me with a bit of an opportunity to just “offload” a little. And I am so glad that I did. Firstly, being asked to list all of your current symptoms was quite humbling. A list of five, which aren’t really that big a deal certainly put some perspective on things. The nurse that I saw told me that there was a tablet she could ask my GP to prescribe for me that would tackle the pain in my ankle (which hasn’t let up), the itchy scalp, my up and down temperature and the thigh pain. Possibly even help to lift my mood a little.

It feels weird to accept medication. I rarely even reach for the pain killers when I have a headache, but if it can help all of those things, I’m game. Although I’m still awaiting confirmation that my GP knows to prescribe it to me, it feels like a weight off my shoulders just to know that there’s something that can give me a little relief.

Honestly though, my mind has been heading into dark places over the last week or two. It’s not being back at work. I’m happy to be back actually. No, it’s about the pain in my ankle. I recall, somewhere some years ago a similar pain. Back then, of course I didn’t know it was MS and even now I’m only just making the connection. I probably put it down to dancing the night away in cheap high heels. You know it’s no good for you. I don’t remember it ever being this painful and unrelenting though. Certainly not enough to give me an occasional limp.

I was warned that post Lemtrada, because my body has had a bit of a battering and it will take quite some time to recover, some of my old symptoms would resurface. What nobody warned me of, was that there was a chance they would come back worse than when I first had them. But that seems to be a common occurrence. I didn’t know that. Lemtrada has also made me all kinds of irrational, so obviously I started to fear all sorts. As it’s taken so long to diagnose my MS I wondered, is there a chance it’s been misdiagnosed as relapsing, and is actually secondary progressive? I feel more or less comforted that this is highly unlikely, having spoken to others that have experienced worse symptoms than the original relapse.

On top of all of that, the irrational mood? The spontaneous crying? Generally feeling pretty miserable? All comes with the territory but I’m assured, it does eventually lift.

And I’ll tell you what’s helping my mood lift. Autumn is definitely on its way! I could practically smell it yesterday morning. The slight chill in the air, dew on the cars and the sun a lot lower. All that’s missing is a pumpkin spice latte from Starbucks!

Photo Credit: Starbucks UK

Thinking about how much I love Autumn, made me start reflecting on what else I love. What else fills me up? What makes my soul happy? What is it that I need from a self-care point of view? I’ve accepted that for the next couple of years things are going to be up and down. That sounds defeatist, but I see it as a pragmatic approach. I’m going to do everything in my power to keep a smile on my face and make myself feel good.

I love writing, so starting this blog has been a huge thing to keep me happy and I have some great ideas of how I can branch out with it. I’m really keen to share the stories of other MSers. I tell you time and time again that it affects us all differently, so coming soon, I plan on sharing interviews with others affected by MS.

Through this digital age we find ourselves in, I have realised that I no longer read anymore. When I was a kid, in the school holidays I’d be at the library every other day getting a new haul. I’d complete the summer reading challenge several times over. But now there’s always a Netflix series to watch, a social media notification to respond to or my lives have refilled on whatever mindless game I’m playing. So less screen time for me, in order to give me more time to get lost in a book, which is all I ever did before those distractions existed.

I’m contemplating participating in “Scroll free September”, but depriving myself seems like an extreme thing to do. I’ve realised that I’m so all or nothing about everything and because of that, it always ends up being unsustainable. I end up trying to do something positive in my life and it actually ends up making me unhappy, stressed or left feeling like a failure. What I’d rather do is set some principles around how I use my phone. I’m thinking along the lines of “no phones after 9pm”. That kind of thing. Restricting Netflix binges to a couple of episodes a night. Nobody likes to admit it, but it’s only when you really take a critical eye to yourself that you see how addicted you are to your smartphone. I want my smart phone to add to my life and be useful. Not something that takes over my life.

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One of the most beautiful pieces of music you could ever listen to

I LOVE music. Any music. But I’ve realised how much calmer and in tune with myself I am when I listen to classical piano. More of that please.

I love being crafty, and I love being warm. So I’m going to finish my patchwork blanket. I’m so close to it being completed so that has got to be an absolute priority.

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My blanket! Each patch is representative of one week in 2017, and each stripe is a day. I picked the colour based on my mood.

And finally, I love learning. I’ve had a couple of Udemy courses sat on the back burner for a while, so I’m going to pick those up once I’ve finished my blanket. I need to get better at doing one thing at a time and following through.

But most of all, I need to get better at doing more of the things that make me happy.

 We all should.

Lemtrada Round 1 – The Aftermath

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

Yesterday, I managed to look more or less human for the first time in over a week!

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!

Doctor Reg! Mum and Dad’s doggo has been keeping me company

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!

 

 

 

 

They can’t stop me smiling!

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!