Getting back on the saddle. (Actually, just walking again is great.) – A new life with CIDP

Chapter One:

It has been a considerable time since I posted… Couldn’t, as have spent much of the past several months in hospital and convalescent care.

Initially the Emergency doctor told me it was probably the herniated disks in my back that was causing numbness and tingling in my extremities and extreme weakness. He gave me some pain meds and told me to see my family doctor and get an appointment for tests.

The next day I was back in Emergency, my legs would not support my body. I was falling all over and finally could not muster any strength to get myself back up. A more astute doctor realized there was no connection between my back problems and my current symptoms. He mentioned something about someone called Gillian Barray (well that’s what I thought he said) or Lyme Disease. He would have to a Lumbar Puncture (also called a spinal tap) to confirm but since results would take some time to get he wanted to start treatment for this Gillian Barray’s syndrome immediately. (It is actually Guillain-Barré Syndrome he thought I had, more below.)

I agreed to this, I probably would have agreed to just about anything at that point, even though I told him I had never even met this Gillian Barray and knew of no reason why she’d want to give me her disease. For some reason he seemed to get a chuckle out of that statement.

For almost a week I had intravenous tubes stuck in me, oxygen in my nose and a heart monitor attached. Every move was a challenge not to disconnect myself from something or other. Then there were respiratory specialists trying to get me to blow into various devices. It took me a while to figure out why.

I made a vow that when I got better (the doctors were saying six months to two years) I would search the planet to find this Gillian Barray and introduce her to a most painful suffering and slow death. After getting somewhat better and able to some research I found that Gillian Barray was in fact Guillain–Barré, two guys who were already dead! No problem. I would find their graves, bring them back to life and kill them again and again and perhaps again, slowly this time. Yes, you are quite correct, I was pretty angry at this stage (putting it mildly).

Well numbness and tingling, screw you guys Guillain and Barré, it was just this side of paralysis! Feet, legs, groin, hands, arms, and then the muscles associated with the Central Nervous System (diaphragm, mouth and throat, bowels, bladder…). Yeah, I was so bloody concerned about not being able to stand up, I didn’t realize I could barely breathe!  I guess I was lucky, I could breathe (from what I was told many can’t) though only at about 50% of normal.

That’s what happened. I was getting better though. I could breathe normally, get around with a walker or canes, eat properly, read a book, use a computer. So they sent me home.

Of course that’s just the time for a relapse…


7 thoughts on “Getting back on the saddle. (Actually, just walking again is great.) – A new life with CIDP

  1. Repeated scripts are just lazy television making and, as I’m viewing you through a screen, you’re television of a sorts. So, no relapses allowed.

    At least you’ve got a diagnosis now. Sure, it’s not a nice one, but even that is better than sitting there wondering why you’re feeling so bad and nobody being able to tell you anything. A bit too much of that and it starts to play on your mental health too. Of course, such a rare diagnosis is likely to play tricks with your mind too, so be extra mindful of the words you use in your internal monologues. The last thing you want is to convince yourself whatever deity you believe in (is it me?) is out to get you.

    Hmmm, just rereading and I can’t see that you got the results of your tests back. So this is still just a probability rather than a certainty? If it is GBS then I seem to remember it being a short term condition, although obviously your doctor will have much more information about that. Coming at the end of another problem though, will make it seem like one long train of crap parading all over you. But you’re out for now, you’ve got your script orders for future seasons, and you’re able to do things to keep you occupied. So that’s a good sign for future seasons.

  2. Thanks for the positive thoughts…
    Sorry to say that Chapter Two (working on it now) includes the aforementioned relapse… I just play the role, I didn’t write the script ;), (I wouldn’t write a script like that for anybody).
    Stay Tuned…

  3. Glad to hear you’re getting better! I know someone else who suffered from GBS; hard road, but she is back to normal now and enjoying life again …

    Hope the same is true for you!

    And thanks for stopping by my place… Lots of positivity in you, in spite of the hard months. Hope to see you around again soon! 🙂

    • You are quite right, GBS/CIDP is a long and rough road. I have beefed up my spiritual suspension and am ready for the bumpy ride.

      Thanks for the kind words. I enjoyed your site and will be back.

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