Wonk update

28.03.2015

Today I had one of ‘those’ moments. You know the ones… you’re not really paying attention, busy doing whatever it is you’re doing and all of a sudden it hits you. WHAM!! THIS is where your life has taken you. This is YOU now.

I’ve had a few of those moments over the years. Some have been great – times when I’ve suddenly and overwhelmingly appreciated wonderful things in my life – being a mum; finally qualifying …that sort of stuff, but today’s moment wasn’t a good one.

I was chatting to a friend via IM. She knew I’d been having a bit of a hard time of it lately, so just checked in with me.

She also has a chronic medical condition which significantly impacts upon her life, so we kinda get each other. I would do anything to make her well and I wish she didn’t have to deal with the things she has to, but it is nice to find someone who really understands. Someone who gets it.

It wasn’t a long conversation, but it was a significant one. To me at least. Perhaps to both of us. Perhaps that’s my fault.

She asked what I was doing and I told her the truth. My mum was here. Sometimes (and to some people) I would just say something like “I’m spending the day with my mum.” I was after all but the reality of the situation was that mum was here because I needed help.

When I got my friend’s message, I’d just woken up from a sleep on the sofa. My fatigue is ridiculous at the moment. I’m shattered about 30 minutes after waking up. I could quite easily spend all of my time in bed and even getting dressed and putting on the appearance of ‘business as usual’ is becoming increasingly difficult. I’ve been told napping isn’t a good idea but just having mum visit had left me too exhausted to fight it and I’d fallen asleep.

I told her I had just woken up and that mum was here to help because things were difficult. Typing that, as innocuous as it may be, I had the moment. It’s Saturday afternoon and all I can manage to do is make it from my bed to the sofa. I couldn’t even pick mum up. She came on the bus (actually, 2 busses) from 10 miles away which, because we live in the sticks and it goes all around the houses, took her almost 2 hours.

Here I am, in my 30s, unable to do very much at all. Even brushing my hair or my teeth takes more energy than I have most days. My arm gives up sometimes midway through a task like that. Something we all do every day and before I became ill something I did without thinking about it.

The same can be said of talking. Who really appreciates the ability to communicate? I mean, really?? It’s ESSENTIAL!! Even if you’re communicating with someone who speaks a different language, facial expressions often mean that much can be understood irrespective of any language barrier.

I’m not able to talk without significant pain and fatigue. People don’t get that and I don’t really know why. I know it’s not through any lack of consideration. I think it’s because it has been going on so long that seeing me struggle to talk is no longer unusual. People probably forget that it is incredibly painful. In fact, about 6 months after TW started happening I mentioned the pain to someone and they were surprised, saying “I didn’t realise you were in pain, but now you mention it, of course you would be.” I had thought it was obvious.  My muscles (and even my jaw) are twisted into unnatural positions whenever I try to speak. Even when I’m not talking, there are many unseen symptoms and lots of muscle twitching and twisting. It never stops.

I know I haven’t posted a Wonk blog since before I went to London in December, so I should probably explain that I have been diagnosed with dystonia. If you’re interested, there is some information here: http://www.dystonia.org.uk/index.php/about-dystonia. It is a neurological movement disorder which causes the signals the brain sends to the muscles to get muddled up along the way. So, rather than there being any weakness in the right hand side of my face (as the NHS doctors prior to this one had said), it is actually the muscles in the left hand side of my face which are overactive. The over-activity is essentially pulling the muscles on the right too tightly to move freely, so it looks as though there is some paralysis. The treatment is Botox in the overactive muscles and I’m waiting for my first appointment. In the meantime, the dystonia seems to now be affecting my right shoulder too. I went to my doctor with shoulder pain a few weeks ago and he pointed out asymmetry and said the muscles were pushing my spine and shoulder out of position. He prescribed some muscle relaxants which, after 3 days, took the shoulder pain away. It had no effect on the pain in my face and neck but the shoulder pain went completely. If only I could find something so effective for the rest of my symptoms! I do think that as a result of the muscle relaxants my face appeared slightly less twisted and perhaps trying to speak was just a touch easier. Despite their effectiveness, you’re not supposed to stay on these meds for very long so I had to come off them last week. The shoulder pain and asymmetry came back and TW got worse, so I’m back on the meds again now. I will have to keep stopping and starting until (hopefully) some other treatment starts to be effective.

Anyway, back to communication….in addition to the speech issue, my face doesn’t do what I want it to so even facial expressions are often out. Whispering is easier, but still difficult. I have a voice amp I’m trying to get used to but I’m not getting on with it. It makes whispers louder, but I’m still whispering! It feels unnatural and forced and having to use it makes me sad.

Mum loves to talk, so spending time with her (in fact with anyone) can be a challenge. She understands more than most as she’s been there throughout, and she will often preface her comments with “you don’t have to say anything but I’ll just tell you….” The problem is that I WANT to respond. The fact that I can’t makes me incredibly frustrated.

I’ve gone slightly off track. In fact, I think I mentioned much of this in my last Wonk post. So, back to ‘that’ moment:

I thought back to Saturdays past. Shopping, cinema, swimming, girlie lunches, dates, seeing friends, pub, family outings, laughter and general fun and frivolity. Even work and/or study. That life is in such contrast to the one I’m living now.

It feels like a lifetime ago. I have always been someone who welcomes a challenge and who loves to keep busy. I was a single mum, working full time while studying at university. I would go to work, come home, look after my son and get my uni books out. I LOVED that. I always wanted to push myself. For goodness sake, I’m the person who chose to sit the Mensa entrance exam during revision week! I always had my eye on the next challenge. I’ve always been ambitious and proactive. I am hardworking and committed and will achieve whatever I set my heart on, no matter how long it takes or how difficult it may be.

Busy, busy, busy. Happy, happy, happy.

That was me. IS me? I don’t know. It feels like I’m talking about a different person.

The high point of my day now is when my little alarm goes off on my phone to tell me it’s time to take my next meds. Not because they have any pleasant effect (they don’t). Not even because they take the pain away (they don’t). It’s the high point of my day because it means that in around an hour’s time the edge will be taken off the chronic debilitating pain I feel every day, all day. They just take the edge off. That’s as good as it gets. For about an hour, my pain will be reduced ever so slightly. And that, let me tell you, is an incredible relief.

The only thing is, my general attitude hasn’t changed. I am still dedicated, hard-working and I still love a challenge. I still want to get that phd. I have the same goals; the same drive. The problem is that those goals and that ambition are inconsistent with my physical capabilities. That is incredibly hard to accept.

The best way I can describe it is like this: I’m a healthy person living inside a poorly person’s body. I think that sums it up. I’m still me; I just can’t get my body to do what I tell it to!

It’s like the speech thing. When I try to talk my speech is slurred. If you want to have a little insight into one aspect of TW, try talking to people like that for half a day.

I look like I’m fine. I’m often told “you look well.” I know it’s meant with the best of intentions but to be honest I wish people wouldn’t. If only how I looked reflected how I felt.

When people first meet me (before I speak) they assume I’m fine and they treat me as they would anyone else in whatever situation we’re in. But when I talk the way I do, you can see the change immediately. They slow their speech down. They assume that because I’m not able to express myself the way most people can, I must be lacking in the brains department.

I can hear fine, thank you very much, and I don’t have an IQ of 50. You don’t need to slow your speech down for me and, whilst we’re on the subject, please don’t look at me with pity. I appreciate where those feelings are coming from, really I do. But I am cripplingly aware of my limitations and presentation without your facial expression underlining it further.

The reality of the contrast between Saturdays then and Saturdays now, and that between the inner and outer me affected me profoundly today.

If anything, the realisation has made me more determined than ever to reclaim at least part of my old life. I hope the Botox treatment will give me more than a little of that and I hope to be able to update you soon with positive news.

Lou x

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