52% intelligent. 9% modest. More monkey than bear.

Thursday, April 24, 2008

just try and stay positive....

I've got a lesion on my spinal cord. It's just tucked up on the left-hand side of my neck. It might have been there for years for all I know, but it only really came to my attention in the late summer of 2005. At that point, it started to interrupt the transmission of nerve signals down my body, causing sensations of numbness, pins and needles and weakness in various different parts of my body. After a few months, I was diagnosed as having Transverse Myelitis. There's no treatment and there's certainly no cure, but at least now I know what this is called - although I prefer to call it the WTs... the weirdy tingles.

At the point at which I was diagnosed, the specialists I was seeing lost interest in me. They will only become interested in me again if I develop new symptoms as a result of having more lesions appear on my spinal cord or in my brain. At that point I'm worth having another look at, but in the meantime I have to try and put it all to the back of my mind. I do my best. New symptoms may never appear, but the old symptoms have never gone away and probably never will. Since that summer in 2005 I have been desperately trying to ignore the feeling of pins and needles in both my hands, the numbness in my feet and thighs, the weakness and muscle wastage across my arms and shoulders, the distant sensation I get when I do something as simple as scratching my side, my cheek or to the top of my head. Most days it works. Most days I barely think about it at all. What's the point? It's not as though I can do anything about it, is it? I occasionally feel a bit sorry for myself when I find I can't do stupid things like carry a heavy box or wear a heavy bag across my shoulders because I'm simply not strong enough any more. In the main though, I just get on with it.

It flares up sometimes though. I don't know why,but on some days I wake up with a stiff neck and the buzzing seems much more noticeable in my hands; my arms feel heavy; I can really feel the loss of sensation in the soles of my feet and I have a burning sensation in the muscles of my legs. They're not new symptoms and so presumably they're not medically interesting...but they upset me. Sometimes I wonder what new symptoms would feel like. How would I recognise them? When you already have symptoms from the top of your head to the soles of your feet, how do you know where the worsening of an old symptom stops and a new symptom starts?

Yes, I still have the use of all of my limbs and I know it could be a whole lot worse than it is.... but on days like those - days like today - I find it just that little bit harder to fight off the frustration and to stay positive.

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10 Comments:

  • At 11:27 pm, Blogger Lisa Rullsenberg said…

    I think it is more than reasonable to NOT feel positive all the time when you get bad days: the sign that you are doing okay overall is not to be perpetually up/fine but that you can acknowledge and find a way to get through the bad days.

    Take care of yourself

     
  • At 12:12 am, Anonymous suburbanhen said…

    And it's going to be hard to know just what's 'normal' isn't it? For example, I don't have TM or WT's like you but I have noticed an increase in waking up with pins and needles over the past few years which I figure is just a part of getting older and fatter. I don't think for a second that there is something wrong with me, but that relaxed attitude has been taken away from you, hasn't it? It's not fair, really. I personally would be a lot grumpier about it than you are.

     
  • At 12:28 am, Blogger SwissToni said…

    this is going to sound ridiculous, but I suppose I should be grateful that this extremely rare neurological disorder hasn't hit me harder. I was reading a link from the TM wiki page describing how one guy permanently lost the use of his legs over the course of a 90 minute "sudden onset" attack. Lesions in the cervical spinal cord (where mine is) are apparently also much more likely to affect your motorskills. If that's the case, then I'm unlucky to have TM at all, but very lucky that it inconveniences and annoys me from time to time but basically doesn't stop me doing anything much.

    (of course, if I have another attack, then it's MS, but we don't need to dwell on that, do we?)

     
  • At 12:29 am, Blogger SwissToni said…

    I feel like I'm whining. That's not my intention.

     
  • At 2:46 am, Blogger Cody Bones said…

    Your not whining, but you do make me feel like an idiot for my last post at my place. Good luck ST, and I mean it.

     
  • At 4:20 am, Anonymous j. said…

    I don't think you came across as whining. It's a horrible thing to have to deal with. I hate it when horrible things happen to fantastic people. Wishing you the best.

     
  • At 1:43 pm, Blogger Rol said…

    As someone who suffers from a weird, recurring fatigue-related condition that has never been properly diagnosed (though just like you, the doc's have lost interest - basically because I'm not dying, or at least getting worse), I... sorry, I got so wound up in feeling sorry for myself, I forgot the point I was trying to make.

    Oh yeah - you have my sympathies.

     
  • At 6:12 pm, Blogger Cat said…

    I agree with Lisa - it is impossible to feel positive all the time. You do a good job of it most of the time though! And I also agree with Cody - this post puts the whining nonsense I've just written into perspective.

    Take care of yourself.

     
  • At 2:10 pm, Anonymous Anonymous said…

    I have TM, too, at T-12. You said EXACTLY how I feel. Thank you.

     
  • At 9:34 pm, Anonymous Anonymous said…

    As others have noted. Not whining. At all. Just being human. Some days it all just sucks.

    asta

     

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