I would have to say that one of the most noticeable annoyance CIDP has given me is that it has turned me into a mouth breather. Unless I am in a chair or laying down – my body constantly feels deprived of oxygen. This is one aspect of CIDP that I do not understand. I was diagnosed with this rare auto immune disease last week. I was a relatively healthy individual about a month ago with no noticeable issues. One month later and I’m struggling to breath with the slightest of motion. I have the same lungs, the same lung capacity, the same muscle density. The only difference is that my nerves are under attack by my immune system.
At times I question how much of what I feel is in my mind. At times I try to focus on ignoring how my body feels and other times try to focus on everything but the symptons. Nothing seems to work. The most difficult thing for me to do is raise up from bending over or from sitting. Doing so just seems to suck the life out of me.
From the response of most people at work or church seem to have the impression that I am in pain from my movement. There is no pain other than the biopsy site – just utter fatique. The tingling sensation is in my arms, legs and back. There are times I struggle with writing. In my line of business, most is done on the computer so my productivity has not suffered that much at work. I am still waiting to start treatment. I’ve had a couple of calls into my neurologist here locally. The plan is to start me on steroids as a short term approach. Long term may be either the IV monthly treatment. I am also exploring the possibility for stem cell treatment.
I am so grateful for a loving wife who has cared for me. I know that there’s a 13% chance that I could be severely disabled. My church family has also been supported and their fervent prayers are appreciated.