CIDP and Fatigue – How do you explain it!!!

I use to be a bundle of energy, helped everyone at the drop of the hat, did lots of entertaining, plus worked 12 hours shifts on a crushing system, a very physical job. In the last year my energy level dropped about 75%, alot of my friends and family are still looking for the old me. Yesterday I jumped all over my little brother who still has the family hyperness when he tried to rush me along when I was having a bad day. I said I was sorry after, explained how bad the pain and fatigue was that day but I think it took me blowing up at him to get it through that thick Irish scull. People look at us, see nothing physically wrong and can’t understand the toll the disease takes on us. Sometimes if we explain enough it gets through, other times it takes a little more. It doesn’t help that I would push myself to try and be the old me but I’ve finally decided that I need to say no and it doesn’t hurt to ask for help. Let someone else fix the tea and if they don’t offer, ask. Do only what you feel up to, those who truely love you will understand, it may take a little time and you may have to blow up once in a while. If they don’t understand after a time you have to question just what their feelings are for you. Real friends and family will be there in the end.

Kazza,

I used to host the parties for my hubby’s friends often before I got sick. I just can’t do it anymore. It has taken me a long time to admit to the fact that I can’t do the things I used to. My normal “everyday” chores have been taken over by my kids or hubby. I help, but once I start feeling tired, that’s it, I am done.

At the grocery stores, I use the little carts. At the mall and other large areas to walk, I have gotten a wheelchair.

It is very hard for our friends to understand I am sick. I look the same but obviously can’t do the same. The last party we had, I emailed everyone attending asked them to bring a dish of some sort. I provided a ham and they brought everything else. It was still rather tiring to me because of the preparations, but it was better than not having the party or me killing myself trying to play host. I will tell you I like it better when people come here just because I don’t have to poop myself out getting ready to go somewhere and stressing about whether I’m going to stumble or drop something at someone else’s house.

This week my family is visiting me from New Orleans. This is the first time I am seeing them since I got sick. I have my wheelchair ready to go. I would end up in the hospital if I didn’t use it all week. I’m still going to be tired, but at least I’ll be tired sitting down.

Hope this helps.

Kel

Kazza,

I think explaining my continual fatigue is one of the most difficult things I’ve encountered. :confused: As “herself” said, we don’t “look” sick so everyone assumes that we can go-go-go! I used to work 12 hour days in a fast-paced job but I changed jobs to one with much less stress – I work 7.5 hours a day as a receptionist – quite a come down in prestige and $$$ but it’s the best I can do right now. I try to plan ahead, as we all do, for busy days, followed by days of rest. I know if I overdo it, I’ll pay in the end so, after 7 years, I try very hard to pace myself…not always successfully, I might add!;)

I also think coming to terms with my ‘limitations” was very hard. I hate relying on people for anything; I used to do it all myself; now I rely heavily on my husband who, thank God, has been wonderful about picking up the slack around the house. My house is dirtier and messier than ever but I just try to overlook that while I sit and read a book — much more fun anyway than housework!:D

Just keep plugging away at explaining to people what you can and can not do. Don’t overdo — always keep your best interests in mind — you know best what you can do and…what the consequences will be for you, if you do overdo.

Cathy

Trust me, with 3 kids, I understand the fatigue 🙂
I too used to be on the go always – holding down a job, going to school w/ 1 kid- and then CIDP made a lot of that come to a screeching halt.

I have become the master at conserving energy. I reorganized my house when I moved in 3 years ago and got rid of all access clutter. I mean like 16 bags, countless boxes, and trash bins overflowing! If I don’t have to worry about all the excess, I found it freed up my time. I spend less time dusting stuff, picking up stuff off the floor, or rummaging around for something.

The other thing I did was incorporate my family into our daily routine. If it is their item and it is not taken care of, it is good-willed. If they want laundry washed, it has to be in the hamper. The girls are 5 and 7 and I feel they maintain a house incredibly well. So if they can do it, any family member can. They can make their beds, put laundry away, make a simple breakfast/lunch, and care for their items. This alone saves me a ton of energy each day.

I also have mastered planning. I go grocery shopping twice a month and Sam’s Club/Wal-Mart once a month. By cutting down on the times I go and planning it ahead of time, I find myself better off at the month’s end 😉

I still don’t have all the energy I want but I’m learning how to live life without overdoing.

Most of my friends I had before CIDP are gone. They too didn’t understand that by looking okay was in no way a reflection of how I was feeling.
But I found out who my real friends were and how wonderful my family is(both mine and my in-laws).

It’s frustrating but hang in there – you can do it!!

For me, fatigue is just crushing. There are times, like today and most of the last 3 weeks, that I cannot hold my head up for an hour. Sitting in a chair is almost impossible.

I used to develop training and exam material for a nuclear power plant, which was a completely sedintary job. After I got sick, I was allowed to work any hours I wished and take any rest periods that I needed to get through the day. I was still unable to continue working.

The real problem for me has been convincing my neuro that I am disabled. The last visit she told me she has people who are in wheel chairs that still work. Kind of made me feel bad to be sick.

She did make a statement to my private disability insurance that convinced them that I am completely disabled. That was a blessing.

I think you have been given some great advice. You only get so much energy and it must be used wisely. Your true friends will understand and as for the rest of them………oh well.

Take care,

Hutch