Codystanley’s Cidp Story, Final Chapter

JUST AS I AM NOW
I was given a very positive diagnosis of CIDP less then six months after a brief diagnosis of GBS. Not once was there a hint that I might have something else, but sometimes I wonder why (even from the very first day I received an infusion) I never felt significant improvements from the IVIG’s. And, I never experienced side effects, like a headache or nausea. I stayed with them though because I did know that another vital purpose was to control progression. It was as if just plain water was being dripped into me. I was having relapses, but they were small enough so that they didn’t alarm me. I rarely had bad days, only little improvements and mostly I stayed the same. It’s made me wonder at times whether I have something else because I felt like the IVIG’s had no effect on me. But then I think again and accept the diagnosis of CIDP, eight doctors couldn’t be wrong and I do have something chronic that took away my ability to walk and causes teeth clenching numbness. Also, I have to believe that the IVIG’s did in fact work well for me. That would have had to be what ended the falls and brought my progression under control.

My doctor would ask me how I was feeling, I’d always say the same, I’m not worse and because I am a super cautious person; that went on for a year or more before I talked to my neurologist about other steps. That’s what you’re looking for when you think you’re in a remission, saying “I’m the same, never worse”, month after month. Improvements and an increase in strength are also great, but for me, not essential.

Do you think there’s a difference between “end of progression” and a “remission”? And which one am I in? To me, a remission is when the IVIG’s or other medications have brought the progression under control and you don’t relapse, but you still need the treatments because you would relapse if they were stopped. My neurologist told me that my progression stopped, burned out, he never referred to it as a remission and in a safe non-committal doctor way, he kind of hinted that I no longer have CIDP. I ended my IVIG treatments and all other syndrome medications in November 2003, although I was monitoring myself and think the progression actually stopped in 2002, four years from the onset. I made that decision when I overcame the giant “what if” fear, what if I really need them. I don’t even see a neurologist anymore, that’s optional now. So, could I still be in a remission without the treatments to keep the progression under control or has it ended?

I’ve learned how to handle it if the syndrome is just in a remission and should start progressing again, so that I don’t panic over the small things that still do happen. My doctor told me I would “just have to know” and after the first year I was off all treatments I did “just know”. It’s something you have to learn yourself. But, if I am no longer progressing and my CIDP has burned out, and I still gain and lose abilities, I must have regressions instead of relapses because there are times when I am doing very well and then times when I am not. I was going out on short trips with just the walker and could leave the wheelchair; I could balance on my legs (without holding onto anything) for almost ten minutes; I could take baby steps with a cane; then I’d lose those abilities.

I think I just become overwhelmed by happenings in my life because in a sense we have three chronic disorders to deal with; a chronic syndrome; chronic stress/frustration/depression and chronic fatigue. For the past five years I have lived with the stress of trying to care for my mother and her numerous falls and I need my own caregiver to help me. When I went to bed, my brain became programmed to listen for the medical alert and I believe my body created physical sensations to prevent a deep sleep. We had a home care agency for mornings, but most of the afternoon, evening and night care fell on me. One of my own falls made me so angry that the stress profoundly affected me because it was not syndrome related, it was stupidity on my part. An injury to my arm while going to a gym set me back and that took a year before I realized the ache was gone. The worse was being told by a new neurologist that I had a second chronic syndrome, Charcot Marie Tooth (CMT). It took three devastating months of “you have CMT” screaming in my head before I came to terms with that diagnosis and could accept it as just a maybe thing. I don’t even think of it anymore.

When stress and sleep deprivation take control of me, I just give up trying to exercise to rebuild muscle strength; which is vital to me; and I can do no more then maintain the abilities I have. This happens to me too often and turns my life upside down again and again.

Even if I’m not progressing anymore, I’ve wondered if we still ride on a rollercoaster, where we go up and do so well, maybe sit at the top for awhile and then we decline and go up and down until we level off and settle into what we are left with.

I’ve been told and I’ve read that when the progression is under control, we can heal, but do you think we heal for our lifetime or do you believe that we have a “window” and we reach a peak where the healing has gone as far as it can? I wish that I could challenge myself more to find out if I have gone as far as I can, but I’d have to do things alone and that makes it too dangerous for me to be a risk taker. What if! What if! What if I tried putting myself on the floor and my ideas about how I’d get up didn’t work. What if I was exercising by doing squats or knee bends and I went down too far and landed on the floor. What if I tested how far I could walk with the walker and my legs buckled. I might be left with no choice but to crawl to the phone and call for help, so I can’t safely find out how much I can do.

I don’t know if going back on the IVIG’s would still help me at this point. I have considered it, but can’t make a decision because I’m just not convinced that I could improve more. My instincts are very strong. I listen to them and they tell me that the damage from a year of untreated progression cannot heal.

Some improvements do show though; what I call my “BIG little improvements”; when I look back over the years.
I was fearful of using a wheeled walker for six years, now I use one all the time.
During the early years of CIDP, I could not step over the lip of the shower with a walker, now I can step up and over.
I would never even attempt stairs during the first five or six years, now I can climb short stairs as long as I have railings to hold onto.
During the early years I had many falls, my feet would turn sideways and my legs buckled, those things don’t happen anymore. They won’t, I “just know”, you do learn how to “just know” things.

During the first year I needed naps and early bedtime hours, which ended as the years went by slowly.
I think the tiredness I had during the early years was a physical fatigue which made naps necessary. Now I get emotional fatigue which is draining in a different way.
During the early years I could only look at a curb that was like a mountain placed in my way. Now, with my walker I can step up and down with confidence.

I still have a lot of problems with my hands, the fingers on my right hand just don’t bend correctly, but what I called “finger fumble” (my fingers would buckle when I tried to type) doesn’t happen anymore. And my thumbs no longer lock. My grip is poor, I still drop things and I still get hand tremors; these things I’ll probably always have; but my strength is adequate, I’m doing better at opening jars!
I can travel alone on well planned trips that meet my needs. That’s a big one. Another big one for me is that I can pull on the mattress and make my own bed. My “Big, Little Improvements”!
When the overwhelming stress and frustrations that come into my life are under control, I am able to start feeling real HOPE and grab a hold of the thought that I can get better then what I am. I won’t drive again unless the numbness in my feet goes away or be able to walk unaided and I think I will always be somewhat wheelchair dependent, but I still feel like I have the potential to take a few steps with a cane and maybe one day doing my food shopping using a rollator walker.

In view of all I have gone through and what stress has done to me, I feel that my stability has been tested to the limit, because I really do believe that stress will trigger a relapse. My progression ended!
The only thing that continually knocks me down and holds me back is my overwhelming stress, if I can control that and motivate myself to exercise, I’m on my way to find out how far I can go. STRESS, STRESS, STRESS, how many times did I mention it, just think what power it has over us. My lifeline became the Guillain Barre Discussion Board where I found people who understand because they are the ones who feel what I feel.

I am a fighter! I am strong! I don’t give up, I just falter! Even though I have been left with some damage that may never heal, I think I am proof that we do have HOPE. I show no signs that I am progressing! That’s my blessing.

This is CODYSTANLEY’S STORY

Sue