How active should he be?

My husband has had CIPD for 3 months , not standing or walking and in bed most of day. I try to encourage him to get groomed and dressed and up in WC for meals. It is not going well. He does not seem motivated to do exercises,go outside or initiate anything without my being there even sitting up at the bedside or testing his blood sugars.i just don’t know if this is usual or if I’m doing something wrong. Thoughts???

My husband is the same. He use to be very outgoing and liked meeting new friends, now he just lies in bed. He is currently in Hospital with more infections.

He resists taking meds,getting dressed or leaving the house.this sickness has stolen my husband :(

I am so sorry. I know how hard it is to see someone you care for not care enough, or so it seems to me.I am just not sure if mentally he is too depressed to care or physically in too much pain and exhaustion to expend the energy. What kind of infections does your husband have? Can he stand and walk? What do the doctors, SW, etc think is going on? What has worked for you? Sorry so many questions…just feel useless and helpless and very afraid. Thanks for replying Spider…M

My first question is how old is your husband? I am 36 and have had CIDP for 18 months, and i have some good days, and some bad. He probably hurts terribly, but those nerves and muscles have to stay active as long as he can tolerate it. Is he seeing a pain management doc along with his neurologist...because trying to stay ahead of the pain is most of the battle. Then, once his pain is somewhat tolerable, I would see if the doc would recommend physical and occupational therapy...this will help his strength, endurance, pain, and most of all, his spirits. Also my psychologist has helped me out quite a bit, and Ive never stopped seeing her. Sometimes I just go and cry, and other times I'm more communicative. Hopefully this helps and my prayers and thoughts will be with you.

Well said Mel. I am also 36 yrs old and battling w cidp. with the right support team neuros, PT, therapist and family, things can get under control. Good days and bad days. What, if any pain meds are you taking because sometimes nothing seems to work. Most days i can tolerate it, just rest as much as possible. Are you able to work? and live a somewhat normal life

Mel said:

My first question is how old is your husband? I am 36 and have had CIDP for 18 months, and i have some good days, and some bad. He probably hurts terribly, but those nerves and muscles have to stay active as long as he can tolerate it. Is he seeing a pain management doc along with his neurologist...because trying to stay ahead of the pain is most of the battle. Then, once his pain is somewhat tolerable, I would see if the doc would recommend physical and occupational therapy...this will help his strength, endurance, pain, and most of all, his spirits. Also my psychologist has helped me out quite a bit, and Ive never stopped seeing her. Sometimes I just go and cry, and other times I'm more communicative. Hopefully this helps and my prayers and thoughts will be with you.

Dave is 68, healthy life style and living was his passion, however he chose to drink uncoordinated water and eat raw meat and fish and I believe he picked up Campylobacter causing CIDP. He will not initiate any independent activity…getting up in chair, dressing, staying up, going out, testing his blood sugars, taking medication etc. I feel I want recovery and am working harder than he is. I am backing off now, not doing blood sugars, asking him IF he is getting up…not physically helping him sit, dress, etc and starting to leave him to use urinal, undress, get into bed with out help unless he asks.Next week He will try to take his own pills with IPad alarms and medics et. Is this sound proactive or mean…really game to try anything. He is the love of my life since I was 14 and I’m 67 now. Thank you Mel and Phoenix for taking the time and be of good health. Marg

Madonnart, I don't think you are being mean. You could call it tough love. Has he seen the Dr. about his depression? I know for the first several weeks/months of this, I too was in a pit of depression and its not a pretty or fun place to be. I'd get up... make my way out to my chair and watch TV and pass the day. I didn't care if my dishes got done or the floors swept. No one came over, so there was no one to impress, what the heck? But the crying, constant crying was causing problems above and beyond as I was unable to speak to those I had to speak to and accomplishing nothing. I didn't want to lose everything I've worked so hard to acquire. I have lost my car, it was repossessed in January as the bank would not wait for things to finalize and come together with Soc Sec Dis. And rather than continue to argue with them about it...I told them to come get it if they wanted it so badly. They took the attitude with me that I just didn't care about my responsibilities and that made me very angry. I saw my whole world falling apart at the seams. It wasn't until I had a serious talk with my MD that things got better. I told him, I was not clinically depressed. I didn't want to hurt myself or anyone else... I just wanted to stop crying, sobbing. I had to stop crying. and he prescribed Xanax for me, and that has made a huge difference in my outlook on everything. I wake up looking forward to my days now. I plan for my future now. My daughter is coming over and helping me put together raised beds for a garden so I can get up and go out and putz around with it this summer, and not have to kill myself to try to keep it up. Just one of the things I'm looking forward to. My attitude is much better. If he has not done so, maybe you should initiate this conversation with his Dr. Within a few days, I saw a dramatic change in my attitude and began to look forward to things again and found reasons to get up and move around, and I felt much better. Hope this helps... Stay in touch. ~ Tammy ( aka Sis )

Madonnart,
If he has been diagnosed with CIDP,then is he receiving treatment?
For me, until the treatments kicked in, I was unable to lift any part of my body off the bed. Then, once they gave me plasma exchanges and prednisona and cellcept,the damage stopped and I slowly began to get muscle twitches. That told me I was coming back and gave me the incentive to work my butt off in therapy. That was last summer and fall- I'm 56 now.

Hopefully if your husband gets some positive reaction to treatments, he will get motivated to push himself in excercise. But if he feels like he is still going downhill, then that is a helpless feeling.

I know exactly how he feels yesterday I went to my doctors then I slept for the rest of the day. My wife tried to wake me up but just couldn't. Gary

Thanks Jeff and SpringMange we are both scared silly that this disease is so persistent and have seen no positive change. Tonite he asked me if he was dying and if I was going to put him in a Nursing Home. That is not a possibility unless I’ m dead. He goes for IG Mon and Tues and is in so much pain tonite he is shaking.I can’t seem to get him comfortable and that makes him angry and me frustrated. We end up angry at each other when all we are trying to do is work for the same thing …to get him comfortable. This is brutal tonight. Just one small positive anything would be such a relief.

So sorry. There is additional pain when the nerves are healing. Maybe that is what is happening. You would know by now If he's getting worse. So the IG is probably working. It takes so long for the nerves to heal. It feels like forever when your suffering or watching someone you love suffer. It may feel like nothing's better even when it is. Sometimes pain is a good sign. With time, the pain eventually subsides. If he knows that it's part of the process it may help him get through it.

Thoughts and prayers

Here is a web site with the basic information you both need. I personally have had this illness for eight years now but it won't beat me! I'll wait as long as it takes for a remission, and pray for a cure. Gary

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117396/

I have CIDP and I get out and go until it hurts (which is not usually very long....) AND THEN I GO SOME MORE. You just CAN NOT give in. Exercise does not make the condition worse. Hurting does not make it worse (just makes it harder to deal with).

Do what you can as much as you can - at least you are getting on with life. Better if you can find something interesting to do as well.

Such positive responses to read in here are refreshing to see. I search all the new additions to this site when I log on, and as much as I can relate to most of what everyone is seeing and experiencing in their conditions, it's also nice to see some positive outlooks. Nothing can be gained if we don't think positively. Thanks to everyone for sharing. ~ Sis

I have seen a change since he has agreed to get out of bedroom. The goal is to be dressed, had breakfast in kitchen and pick a destination. Some times it is mail, errands with me in the van or as in yesterday a picnic lunch at our favorite beach. His biggest complaint is pain and exhaustion and that means time to get home. He cannot stand and is in a WC. How are you progressing?