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

Chapter Two:

Well I got somewhat better in the hospital.

The treatments (IGIv) (though causing extreme migraines) relieved some symptoms, most of the “tingling and numbness”, the facial paralysis (much like Bell’s Palsy), my breathing got back close to normal but this condition saps away most of (if not all) one’s strength. I was left with very little muscle tone. The overworked physiotherapists did their best to accommodate me but I still needed to rebuild those muscles and my endurance. I could walk about fifty metres, could eat and manage things with my hands for brief periods.

But eventually I became a lump taking up a bed that was needed by someone really ill. The hospital had done all they could medically so I was discharged. As the “tingling and numbness” remained in the feet, calves, hands and forearms I needed the assistance of a walker to walk anywhere, canes in the house, and if I wanted to go anywhere a handicapped bus (or the help of friends) to get me there and home.

Daily, I did my exercises, walked as much as I could, worked my hands with therapeutic putty to get some strength there and did breathing exercises to try to get back to my previous levels.

After about two weeks, it all came back… Relapse!

This time it was even more extreme. I’d fall due to the loss of muscle tone and this time I did not have the upper body strength to get myself up.

Back to the hospital where I was told that I would have to be re-admitted. Then told by another doctor that my condition had already been treated and there was nothing they could do. Back home, struggling just to keep my balance and stay upright I managed for another day. Then a fall down the stairs had me back in the hospital where they decided I had to be re-admitted. My body could not hold itself upright. The muscle tone I had been able to build up was gone, and more. I had to be assisted to a wheelchair for any movement.

The doctor came and told me the diagnosis had been revised from GBS to C.I.D.P. and another week of IGIv was prescribed. This time with some acetaminophen and a hydrocortisone iv to try to relieve the massive migraines I had the last time. It was a week of hell stuck in a bed, needing assistance for almost everything. I forced myself to do the little things, eat ad drink, some in bed exercises and that was it. But I was progressing. By the end of the week they had me in some contraption with wheels that came up to my armpits and had pads and handles I could rest on and hold. They got me walking with that. First about twenty metres, the a bit further, and further still. By the end of the second week they told me they had a bed in a convalescent care centre and I’d be discharged.

Long story, shortened. A two month stay here with physio twice daily (and some other activities) got me pretty somewhat back to normal. I’d do extra exercises on the side (especially breathing and hands).

Now back home for a while, I can wash and shave, walk about 300 metres before I get fatigued, do some chores. Can’t drive anymore so any outings are a chore and must be planned a week in advance to get a handicapped bus for us. They do not allow groceries so that must be taxied or we depend on the kindness of friends.

I am told it may be up to two years to see results of the treatments (but the first word of the name of this condition is Chronic, who knows) so I’ll have to do lots of meditations… I always thought I was a patient person. I’ve realized I am not.

Well I have exercises and chores to do, books to read, writing to do, photos to edit, and programming to learn…

I am going to try to not sit about feeling sorry for myself (though I’ll admit I do sometimes). Also, unless there is something to say, I am not going to spend energy and time writing here about it. It is somewhat cathartic but there are better things to do for me to keep my mental health.

There is still a life to live.

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…