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Living with Polyneuropathy CIDP, GBS, & CMT

Problem working


#1

My wife has been amazing throughout this 9-year ordeal with CIDP. She slept on the floor next to me in the hospital for two months, and helps me at home a lot.

We are both professors in our 60s at a university and have seen our share of bad behavior, which influences both of us in some of the decisions I have had to make and her response. Except for two months in hospital and another at home, I have continued to drive to school and teach. Since last spring, however, I have had such pain that I had to re-schedule music lessons. I have also had to leave before the end of the class that I teach. I keep the administration up to date on what is going on, and have been allowed a few accommodations, allowing me to do my creative work and research at home.

My wife has the strong opinion that I should keep the school and my students as much in the dark as possible. She feels that some people would see me as weak and ineffectual. Fortunately, I have built a decent career that has given me a high stature in my field, and I am now attracting some very good students from across the country and abroad. In my small professional field, it seems as if everybody knows about my illness and limitations. Whenever my students attend national and international conferences, my old friends sometimes ask about me and ask my students to say hi.

I cancelled two complete teaching days, and had to leave class early 2 or 3 times recently. Today, I cancelled my third teaching day this semester. My wife didn't hassle me about it, but later in the day she made comments that seemed rooted in her disbelief that my pain is bad enough to stay home from school. It has been a wrenching decision to make, and I carry loads of remorse for weeks and months. Without saying so explicitly, she speaks as if she disapproves of this, and seems to wonder if the pain is really as bad as I say it is. Needless to say, this adds greatly to my sense of failure, guilt, and overall sadness and regret of what my life has become.

All I want is for her to accept that my pain is severe enough for me to cancel teaching days. It would mean so much to me if she acted as if she supports me in decisions like this, instead of questioning or challenging me.

Not sure if I'm asking a question, or just getting this out there.


#2

Hi Larry .. How ae you travelling..My wife also is a bit funny about the CIDP and sort of wants me to pretend it is not there and reminds me of others worse off . maybe that is good .. dont really know. just know that my balance and strength is in major decline. Mostly I am okay and continue to try and do most things. Once we stop we are unlikely to start again. . Just tonight Jan 7 after lots of swimming and walking over Christmas / New Year legs feet hips all screaming out hot cold burning numb sore etc so thinking maybe increased excess activity not a real good idea.Like you just putting it out there.. Regards Oziurn.


#3

I think you are doing amazing. I know all of us are experiencing this differently. It sounds like you are leveraging your own personal strength and doing the best you can to keep on with your life/passions. Overtime, we adapt to a new normal and those, even that empathize with and support us and educate themselves, don't really know what it is like without experiencing the situation directly. Even among our community, many of us have a different blend of symptoms that vary. My family sees that I have one foot in front of the other and they don't realize the things that are going on internally. They saw me when I couldn't walk and that is the benchmark for not doing well. In addition, so many people think the "get up and go" mentality is the best for you and unfortunately, it is a balance for us. We have so much energy and we have to allocate it and monitor our bodies.

I hope it's going better!


#4

Hi, Larry

So sorry about the struggle with spouse. I also think you are doing an amazing job. My husband and I are professional musicians, and though I can't perform now the the way I used to, I still teach. Some days I don't know how I got through the day. Willpower, good luck, drugs? Some days I have to cancel, so I'm caught in a perpetual cycle of making up lessons. It's just so important to me to be able to support myself with what I love..music. I have kept my students in the dark. About ten years ago, the asthma I deal with seem to worsen hugely overnight(along with newly appearing symptoms which I now realize were GBS), so I use that as my excuse. Since my diagnoses with CIDP a year ago, I take IVIG every three weeks, except the initial twice weekly, then weekly doses for 4 months of so.

It has helped, but I have alot of residual sadness knowing now that I have had this for years, and the diagnosis was only determined a year ago. My hands sustained lots of damage, but I believe are gradually returning.

Just want to say, do what you need to do, and what feels right for YOU. Your spouse has no real idea of the pain, fatigue, and weird sensations you deal with. And hopefully she'll never have to suffer like you. CIDP can be the pits at times, but listen to your heart, and trust your instincts.

All the best,

Susanna


#5

Hi Larry.
My husband has cidp and has for 6 years. It’s been a struggle just trying to adjust to his limitations. And I dare not forget to mention he just turned 46. But do not doubt yourself. I believe your wife is just into a routine in life. One of which she will find out sooner or later has to be changed. Unfortunately it’s not easy. I recently read the spoon theory mentioned on this site. I can assure you it helped me. Lots of luck to you and your wife.


#6

I am late to the discussion, but what instrument do you play?


#7

I am a composer, writing for instruments and electronics most often. I also play electric blues guitar.

larry


#8

I had to quit work after the hand and motor skills when down the drain, and the fatigue became a major issue. I'm 59 and all my co-workers were in their 20's and 30's and didn't have a clue as to what I was going through. The speakers I was building weighed 60lbs. and I couldn't pick them up anymore, then it got to where the 30lb models were giving me trouble. I stayed working way too long, and should have been to see a doctor 4-5 months before. Hindsight is aggravating.