3 weeks to go…

I’m extremely conscious that I’ve not written for about two weeks again. I sort of feel like there’s not a lot to say at the moment, despite the fact perhaps the biggest thing to ever happen to me is imminent!

The countdown is very much on for my trip into hospital. It’s three week today until I’m in hospital starting my first round of Lemtrada treatment. In preparation for this, I’ve taken a couple of days off work to “declutter”. Although not 100% sure where I want to spend my recovery time yet (Essex, with Mum and Dad is an option), when I am at home, I want to have as little “stuff” around me as possible.

Last Monday, something strange happened. I didn’t wake up with my first thought being “I’ve got MS.” Ok so that being my first thought is perhaps a slight exaggeration, but I’d be lying if I didn’t say that over the last 8 months since I got told that I might have it, I’ve been very conscious of it. There’s been an MS cloud. Not necessarily a big grey cloud, but a cloud has been hanging around. But now it’s gone.

It got me wondering why this might be the case. I have a theory that I’ve toyed with for a while now. Had I attended my appointment with the specialist back in March and been sent home with a prescription, that would have been it. Something would be being done about my condition and life would have to go on. I feel as though whilst waiting for all stuff to happen, I’m back in Limbo again (and we all know how much I just LOVE it there!) Now I have a date that yes I am waiting around for, but it feels more proactive. So I’m getting on with life as much as I can.

So cloud gone! Yay!

I couldn’t believe how quickly my date came through following confirmation that I was agreed as suitable for treatment. I spoke to Danny last week and he explained it. I was on an urgent list! It seems insane when I have no real disability in terms of my mobility. I think that’s the point though. Nobody wants me to get to that stage.

Now I’m in the throes of hospital bag planning. I’m so well prepared based on everything I’ve read in the fab Lemtrada group on Facebook. Apart from the obvious stuff, I need to be prepared with mints and cordial. Apparently you need to drink copious amounts of liquid (easier with dilute mixed in) and mints help the revolting taste that steroids leave.

I’m taking my laptop so I can continue my current binge watching of Grey’s Anatomy (no spoilers please – I’m only on Season 6), and I’ve got plenty of other things on the binge watch list! I’ve got books to take, journalling to do and of course I’ll be continuing blogging and writing to my fabulous pen pals.

Now all there is to wait for is the big day itself, which from what I hear, is a massive anti climax!

Watch this space. I’ll definitely be keeping you posted!

MS Fatigue (and an apology)

My Dad always told me when I was feeling tired, to “go out and be active. Energy breeds energy.”

I can categorically say that this is not true with MS. Or at least not for any longer than about half an hour. When I first started personal training with Sam 4 years ago, I had half hour sessions on a Friday after work. I’d go home after and be asleep by 8pm. I was so inactive and unfit at this time in my life, that it was no surprise I was exhausted after our sessions. But then it just became the norm. It never occurred to me to question it, or think that maybe it was abnormal.

Saturday morning’s used to be the time for Poppy’s play date. We’d be home for 10.30 ish and by midday I’d need a nap. I’ve never been a napper, but I just accepted somewhere along the way, the week just caught up with me by Saturday lunchtime.

I don’t have enough fingers to count how many times I’ve told someone that I’m feeling exhausted and that it’s followed with “yeah, me too”.

I bear no hard feelings towards these people at all. They’re trying to empathise. They’re trying to relate and make me feel less alone. That is “no bad thing.” I get the kind of tiredness they’re talking about. I also get another type. Fatigue. Fatigue that can be so bad, that I read the other day that they’re coming up with a new name for the type of fatigue that you get with MS.

“MS Fatigue” is different to the kind of tiredness that an afternoon nap, or an early night might fix. On it’s best days, it just feels like a constant need to yawn. On it’s worst, it feels like having a really bad hangover and a bit of jet lag, with the flu chucked in for good measure. It’s like having a solid night sleep, and waking up feeling like you could go back to sleep for another eight hours. It’s a feeling that it’s impossible to get enough sleep.

As with everything with MS however, it feels different for everyone. Let me tell you what it can feel like for me…

1: Elephant Legs

Yep, you read that correctly. What does that mean though? When I refer to having “elephant legs” I’m talking about my legs feeling so heavy that they should belong to an elephant. Not to me. They feel ridiculous and even just moving them one step feels like a huge use of energy. When I feel like this, I struggle to walk quickly. There’s been occasions when I look at a stair case I need to climb, and I can’t see how I’ll ever make it to the top. I live in a three storey house, and sometimes, on these days I need to have a little sit down on the step to recover from getting to the top.

On a really bad day, elephant legs can become an elephant body. And the prospect of putting on make-up, having a shower or doing my hair seems like an unachievable task.

2: “I can be in the middle of a sentence and… …. …what was I saying?”

Sometimes I’ll forget what I was talking about. I don’t mean that I lose my thread. I mean full blown forget what we were talking about, who you are, who I am and where I am. If you know me well, you’ve probably been on the receiving end of this. You’ll more than likely be met with a blank expression.

3: Vaccuum Head

Sometimes my head feels like it’s in a vacuum. I feel like the contents of my head is being compressed and all of the air is being sucked out. This one is an odd sensation, which stops me thinking properly and generally makes me feel spaced out.

4: The Sober Alcoholic

This one is when my fatigue is more severe. When this happens it’ll be like I’m drunk. My spatial awareness goes out of the window, closely followed by my ability to balance. I’ll trip over my words and even slur them on really bad days. They’ll come out in the wrong order and I’ll probably call a “laptop” a “cabbage”. Or something like that.

5: Focus

My eyes decide to not focus on things properly. I’ll look up at the menu in Starbucks, and it won’t make sense (not a huge issue – I almost always have a caramel latte with almond milk!) It usually sorts itself with a second glance.

6: Too Tired to Care*

You: “What are you having for tea tonight?”

Me: “Yeah.”

You: *blank expression*

Me: “I’m sorry, say that again, I have no idea what you said.”

Sometimes, I just struggle to be present in a conversation. I’m too tired to listen, or think of a response when I do manage to listen. I’m too tired to keep concentration and ultimately, I’m too tired to really care.

It’s important to realise that the severity and number of these symptoms can vary daily, and it certainly links to how well I’ve managed my energy levels for that day. I’m not keen on the label “spoonies”, but “spoon theory” does go some way in explaining management of energy levels. I’ll write about it in another blog, but if you’re really interested in the meantime, Google can help you out 🙂

*I am so so sorry if I’ve ever done this to you. As you can see, it can’t be helped, although that’s not an excuse. I feel terrible when it happens, because I’m just not listening. I feel ignorant. You are speaking and I’m trying (badly) to make you feel like I’m engaged and I’m not. It’s not that I don’t want to be. I just can’t. I literally zone out.