My MS Story (Part 4)

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Ever since my “dizzy” episodes, my balance has completely died a death.

I’m a girl that could stand in the tree position in yoga for at least 10 minutes. I remember being in a ballet class at around 14 and being challenged to how long I could stay stood on tip toe (I won that contest!)

But now, I am a girl who goes out for a walk and might fall over 5 times. I am a girl that goes to a Zumba class and falls over her own feet. I go to step aerobics and trip over the step and fall spectacularly on my arse. And I’m a girl who can’t walk 10 feet over “there” without clinging onto Dave for dear life because I’ll probably have some kind of misplacement of my feet that will probably end in a face plant! In fact, my balance is so bad, I can be stood and almost go flying for no apparent reason at all. I literally struggle to stay stood on my own two feet.

I have this noise that I make when I have a wobble that I can’t really explain. But Dave probably hears it more times than you can count on one hand over a weekend. It’s just a kind of “uuuhhhhh” sound and it’s not very flattering!

Along with a distinct lack of balance these days, and occasional lapses in coordination, somewhere along the line I started having phases where I slur my words. This is mostly noticeable at work when I’m training. I have days where the words just don’t come out in the right order or without all joining up.

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Probably about 18 months ago, I mentioned to Sam that I was struggling to really take a deep breath. I was yawning but struggling to hit that sweet spot. I felt like someone had a grip of me around my breast bone, and was squeezing. I just couldn’t quite catch my breath properly.

She’d heard of this being a problem in people who had a sensitivity to caffeine, so she suggested that as an avid coffee drinker, I should switch to decaf. I did this immediately – I don’t drink coffee for the effects, it doesn’t stop me being knackered so it wasn’t an issue for me.

Within a day or two, the squeezing sensation was gone. Result! Problem solved! I trickled back into the habit of caffeine though within a couple of months. And guess what? Sensation re-appeared. So what did I do? Obviously I knocked the caffeine on the head again.

And it went again.

But I didn’t go back to caffeine this time and it still happened. Of course I did nothing with it though. It was just something that happened sometimes, and maybe I was just THAT knackered that I struggled to get a proper satisfying yawn. No amount of yawning was going to satisfy me. Yes. That was it.

And then I got told that I might have MS.

As any normal human being, I did the thing where you go and look up all the symptoms, particularly as I didn’t really have a clue what it was.

The list is endless.

I was glancing down the list and so many of the weird “glitches” with my body that I’d put down to getting older, putting on weight and working too hard in the gym were being given a “proper” answer. As I read down the list, I saw it. The MS hug.

“The MS hug is a symptom of multiple sclerosis where you feel as if you have a tight band around your chest or ribs, or it can be pressure on just one side of your torso. Some people find that it is painful to breathe. The feeling can range from annoying to very painful.”

So that’s my so-called caffeine problem explained – BRING ON THE EXTRA SHOTS IN MY LATTE!

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On the subject of caffeine, I mentioned before that it does nothing for me and perhaps that’s another link in to MS. The fatigue can be like you’ve never imagined or experienced. When I am really fatigued, I suffer from real lapses in concentration too. I’ll forget what I’m talking about mid-sentence. I don’t mean just losing my thread. I mean I literally forget what I just said, who I am and where I am.  I struggle to hold focus in conversations with people. I zone out. I know I’m doing it, but I struggle to find my way back.

The explanation for this come as somewhat a relief. I felt so ignorant for how I behaved sometimes. I still do, but it comforts me that there is at least a reason for it. I don’t see it as an excuse though. For me, it’s something in my behaviour that I need to learn to be conscious of, and to manage it. The “how I do that” is still unanswered and something I’m exploring with myself.

I could go on and on about all my possible symptoms of MS, and how I excused them until I was diagnosed. I’m sure you’re noticing that I had all the excuses. Now the thing is, those so-called excuses still might ACTUALLY be the reality.

The trouble with MS, and the thing that I’m most struggling to come to terms with, is that a lot of things that are symptoms, might just be how I am anyway. Some things might just be who Jo is. Some might be Jo with MS.

What a minefield eh?!

The thing is, it doesn’t really matter. I know that. It’s just actually accepting that that’s challenging. There are some symptoms that are unmistakably MS though, and it’s important to note that these things aren’t a permanent fixture. They go through waves of severity. I might just wake up with it one morning and by midday they’re not even there anymore. Other days, they might be there, but so insignificant, I’m not even aware of it’s presence.

 

 

 

8 thoughts on “My MS Story (Part 4)

  1. Thank you so much for sharing your story! You sound so strong and positive, so you can beat anything. I was diagnosed with MS almost 18 years ago when I was only 19. It has been a struggle, but keeping a positive attitude will always help. I am looking forward to reading more of your posts! Sending you lots of love and comfort!!!

    Liked by 1 person

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