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Living with Polyneuropathy CIDP, GBS, & CMT

High Expectations


#1

Does anyone or did anyone have issues with other people believing you could do more physical activities than possible, or for longer periods of time than possible? I had to move back in with my parents and Im pushing myself way too hard, I actually sustained an injury tripping over a throw rug (My mom refused to pick them up, said I could figure it out) trying to carry laundry and walk with my walker. I am expected to vacuum and just do things I’m not supposed to do, but I want to earn my keep and keep the peace.

I can and will do what I’m able to, I just need some back up. We don’t “fail” in my family.


#2

Hi Love,
I grew up in a similar type family. If you read much on this blog you will read many with a similar story you shared. I deal with fatigue. The way I explain it is that it feels like when you have the flu and have no energy. A friend recently said I just need to have the will power and exercise more. They were talking about a man who ran marathons before my CIDP attack. I laugh at their ignorance. Others suggest a diet that will cure me. I haven’t found anyone on this blog that a diet helped them. Diet is important for everyone sick or not and I get the same benefits as a person not infected with an immune disease. It is not a muscle issue, it is a nerve issue and you cant do more to build it back up. That said, excercise is still very important, I try to do something at least 2x a week, but many nights I can hardly get off the couch. It would be wise for your family to read this blog so they can see what you are dealing with.


#3

I thought about asking them to read this blog, but I don’t think they will. I will, however, show them your post so they understand or at least can see it is a nerve issue.

Thanks for your response!


#4

I am addressing this post to both of you, Love4doxies and Apyper65. My husband has CIDP. My heart aches for both of you with families that don’t seem to be supportive. I am a bit horrified to hear both of your stories, but have seen some of the same reactions from some of our friends and neighbors - “your coloring looks a lot better, you must be improving”, and “hey, I saw you outside, you look great. Things must be better!” I honestly think people don’t know what else to say, or how to react so they try to be encouraging and positive. But one’s own family should see and know the realities you are dealing with. I see the distress on my husband’s face when he asks for help with a shower, and I know it is harder for him to ask than it is for me to make any sacrifice it takes to make his life easier. Before he got sick, he was the “rock” for a lot of us - his family, friends, work associates - the man who did everything and could take care of anything. Please, print out a few of the more heart-wrenching posts and leave them where your family can’t help but see it. And ask them to do a little medical research of their own, instead of just hearing personal stories from people living it. That should be enough to convince any idiot that you can’t just regrow nerves through sheer willpower. Sorry for the rant, but I hope something gets through to both of your families. You will be in my thoughts and prayers.


#5

Thinking of you during this struggle. I was diagnosed in Dec '14. After acute recovery or looking fine on the outside - outside expectations are not diminished. Once I got out of the wheelchair, lost the walker then cane, it almost became expected that nothing ever happened. My advice - do what you can and don’t push it.


#6

I look at it as an ‘energy bank’. Just so much there and often a very hard choice as to what to spend it on. I can do x in the morning, but y in the afternoon is now out of the realm of possibility. It is a ‘nerve thing’ and while it’s hard to argue against exercise, etc… it ain’t gonna help… My wife is functionally deaf and often doesn’t understand that pushing myself isn’t going to make things better any more than ‘listening more’ will improve her hearing.


#7

W_emphasized text_


#8

I am constantly encouraged to do physical therapy. Tried it twice in a year. Water therapy which was not new to me as I did deep water running for several years prior to getting ill. For 30 to 60 minutes uninterrupted. And land based. Both just exhausted me. I had to give up both, and unless my condition improves, I refuse to do it. I know how you feel.


#9

Hello. My heart goes out to you. I have polyneuropathy as yet diagnosed as any particular autoimmune disorder (had a lumbar puncture so hopefully soon), but I have also been assumed to be able to do more than I can. My own husband told me the other morning that I quit working because I simply didn’t want to work. Meanwhile, when I was working i had to take off or leave early so much that i feared my job was in jeopardy. I finally contracted a very painful virus that would have meant many days off and quit…with the support of my neurologist who agreed that i should go on disability. But i know exactly what you’re going through. It’s frustrating and short-sighted. I’ve finally made the determination that it is partly caused by a level of denial that you are actually suffering from an illness. Don’t despair. I feel so much better now that I’m not working with some fatigue and headache sometimes but not the constant headaches and weakness that I felt when I was working. Not working has actually made it possible for me to take short excursions to stores and the pharmacy without having to spend all day recovering from a shift or spending all day in bed preparing for a later shift. But it’s a constant battle with those closest to me. My sister actually said that I shouldn’t go on disability because I have been healthy my whole life. I had to remind her that I haven’t been healthy for a year. Keep on doing what you are doing and try not to let those who don’t want to believe you’re sick to get to you. It’s their denial and that’s their problem. Best to you.


#10

It’s so interesting that my parents expect me to be able to do all of these physical activities when they were there with me in the hospitals, in the nursing homes, in therapy. My dad still takes me to therapy 3 times a week and sees how difficult It is for me. I over did it yesterday. I had therapy, changed the bedding, washed and folded laundry and made dinner. I can barely move today. My dad has been home with me all day, he finally sees my plight from over doing it.

Thanks for letting me vent my frustrations. It just kills me when people act like this is somehow our choice.


#11

My biggest advice: PROTECT YOURSELF.

You’re going to have a find the strength inside yourself to divorce yourself from the expectations of others. Easier said than done, I know.

I don’t have polyneuropathy but I do have chronic migraines, lymph edema in my left arm (so I can’t lift anything with that arm, really) and nerve damage in my face. They all involve chronic pain and none of them can’t be “walked off” or “pushed through.”

When any them are bothering me, the more I do, the worse it gets. So, when things are starting to go south, I stop. Period. Do not pass go, do not collect $200, do not care what anyone else says or thinks. Those people are not living in my body with my pain. Their expectations can’t be mine.

Living with a chronic condition, especially a rare one, means you have to protect yourself and do what’s best for you, not best for what others think. It’s actually easier then it sounds and can done without being combative about it (well, except for me when I have a migraine and lots of what I like to call “free floating rage on a hair trigger”).

Be straight with people. Tell them point blank what can and can’t happen in your world then stick to it. Often they simply don’t understand what you’re dealing with on a regularly basis. Tell them.

azurelle


#12

It’s vital to have at least one family member go with you to see your neurologist and listen to straight talk from a medical professional. Insist in it. The doctor can explain how dangerous it is for you to overdo — you could sustain muscle damage that won’t heal, you could collapse from exhaustion. You need protection from your own family, and your doctor might be able to talk some sense into them.


#13

My issues have been more a matter of inappropriate expectations than too many expectations. My wife was very supportive when I came home and removed throw rugs etc. but you could tell there was some resentment about it. Now there are things I can do and things I simply can’t do. Often she will not allow me to do the things I can (doing them before I can get to them) and expects me to do things I can’t. I’ve only fallen twice in the last three years and both were my fault.

We’ve now put the rugs back in the bathrooms and I can navigate them without issues but I do still need to be careful. Since I’m in my 60s I have the added issue of the normal aging process affecting my body. For the first couple of years my recovery was greater than the affects of aging but now my recovery has maxed out (3 years post diagnosis) and I’m facing a slow decline. I added a mobility scooter to my repertoire in December as my ability to walk moderate distances began to decline.

No matter how much reading you do I don’t think anyone who has not had these nerve related disorders can ever understand what we deal with. We look normal, we look healthy but in truth are weak, clumsy, and easily exhausted. Add to this that we are often in intense pain and it’s easy for the expectations of others to become very unrealistic. Good luck on your continued recovery.