Question about a CIDP book.

Cookiegirl,

Welcome to the forums (sorry you had to find us under the circumstances, however 🙁 ). I don’t have CIDP…………I contracted GBS on Sept 2004.
Anyway, I haven’t read that book, but I don’t think it would hurt anything to purchase it and read to your husband. I got really depressed also. It is common to do, considering all ya’ll are going through. Just coming here to this site, and communicating with everyone here and their opinions, etc…….surely would help your situation, I would think. 🙂

Talk to you later,

Perry (I think you are my neighbor?? Do you know where Joshua is? 😉 )
What a coincidence if you are!!!!!

Hi Cookie! I never heard of that book but would like to check it out myself. I have CIDP and it is tough for a marriage to go through. In fact any illness in a family being married can cause a strain.
The one thing when we get sick and there is a spouse also involved being a caretaker, we have to change rolls with each other.
Depression is quite common with those that have illness. They have lost a part of their life over this and trying to figure out what to do with themselves.
I know when I became disabled, I really had a hard time dealing with it. I was working and had a good paying job and was happy. Was doing great in my life. Then I got sick and could not work and was getting sicker. I knew I was sick, but felt so bad that my husband was stuck taking care of me. I felt useless, worthless and felt I had become a nobody.
The trick of the trade is making the one that is depressed with the illness gain exceptance of what they have. That it happened and we can’t change it. Could get better but could get worse. So we will have our good days and our bad days.
Make that person feel useful. Maybe giving him a light chore to do and thanking them for the help. Getting them to be able to take care of themselves while you are working is a good thing. Setting up one room for him when he has bad days.
My husband has to work. We can’t afford him being out of work. So we have made things easy for both of us. I get up every morning and take my bath before he leaves. That way there is no risk of me falling in the tub. I have a shower chair and a long shower head with a hose. That helps alot. A higher up toilet chair or toilet extender that raises the seat up is helpful.
We even have a small college dorm refrigerator in my bedroom. If I get bad off, then my husband fixes me soda’s in the frig, Water, whatever I like to drink. A bucket of ice and he will fix a few sandwiches for me to eat while he is working.
When we grocery shop. I buy things on days where I can’t cook well and fix fast meals. My husband still gets out of the house to breathe on the weekends and goes shopping or riding around if I can’t go with him.
It’s all a matter of both parties working together to make things work.
Something I posted a while back ago but not sure where it’s at. He needs your support and understanding but don’t pamper him and don’t baby him. And at the same time, he has to understand that you are now caring for him and he needs to appreciate what you are doing for him.
He needs support and with me being sick with Lupus many years back the one thing that got me stronger and helped me except my Lupus was getting online and finding a support group. Talking with other people and feeling like I am back in the world made a difference for me.
Cookie! I was severely disabled many years back with Lupus and once again I have become sick again but with something different. CIDP! I was at home all day long, scared of my disease and only saw my family after they got off of work. Could not drive and was confined to the walls in my house. Very very depressing. I even got fed up and was tired of being sick and my family came home and found me unconsious and I had taken an overdose of pills. I wanted to die!
Then we got a computer and I got online but it was hectic at first trying to learn the thing. Typed in Lupus and found a forum and was meeting others like me! I gained a life back because of that support group. The site ended up closing down in later years and boy did that hurt. Then I later found out I had a neighbor with lupus and we became good friends.
Get him online in this support group. It may get him out of the depression he is in and help him to understand what he is going through. Plus it will help him gain some confidence that he has lost.
Hope, Faith, Confidence and Support really helps a person when they have something like this going on! But get him online! You will see a world of difference in his personality.
Good luck Cookie! I hope your husband gets well again!

Cookiegirl,

Depression pretty much hits all of us it seems. There is a lot to deal with, we grieve what we have lost and what we can’t do. If we were on life support, or spent a huge amount of time in hospital, especially ICU, there may be some degree of PTSD.

It is important to understand that depression is a chemical imbalance. It is not a question of “picking up our socks” as some folks think. Depression, even mild depression often requires chemical control. There are some good anti depressants out there that are non-addicting. It may be something you need to look at for him. The meds also help with some of the pain associated with the disorders we have. Counselling is not a bad thing either. It can help us come to terms with where we are in life and how we are affected by our illness. Both of you may benefit from that route. Caregivers have their own stressors around our illness.

Exercise also can be valuable but is difficult for some of us due to the physical limitations we have but just getting moving often helps me feel better.

Please keep in touch and let us know how we can support you. I think Linda is right in suggesting your husband may want to come on here. It would be good for him to know that he is not alone in what he is experiencing. It sure has been valuable to me.

Cookiegirl

I agree with others. I have CIDP and my husband has had to care for me.

I often feel guilty about this! The most important thing to remember is communicate. Talk about everything and nothing!!

Try to get hubby to read and post on this site. Without it I would be a basketcase!

I am also interested in reading the book by Scott Berman “Coping with Peripheral Neuropathy;How to handle stress, disability ,anxiety, fatigue depression and pain

I can’t find a place to order it. Where did you find it?

Take care

Rhonda from Canada

Thanks I’ll look for the book.

Rhonda

Cookie,

I have that book and I really think it has helped me. Have you looked into the other books out there that are GBS/CIDP specific? I have a list I can give you, it’s quite extensive. Let me know if I can help, jerimyschilz at hotmail dot com

Jerimy

Here are the books that I have, the Foundation in no way endorses any books. I however have read these books and thought they were very good and informative. All are available through Amazon:

Guillain-Barre Syndrome: From Diagnosis to Recovery (American Academy of Neurology) by Gareth John Parry and Joel S. Steinberg

Learning to Walk Again: How Guillain Barre Taught Me to Walk a Different Path by Ann K Brandt (Paperback – Dec 9, 2002)

The Darkness Is Not Dark: Overcoming Guillain-Barre Syndrome by Regina, R Roth (Paperback – Jul 9, 2005)

A First Step – Understanding Guillain-Barre Syndrome by Brian S. Langton (Paperback – Jul 6, 2006)

Going Full Circle : My Fight Against Guillain Barre Syndrome by Phillip Taylor (Paperback – April 3, 2008)

Up from the Abyss: A journey of personal redemption from the ravages of Guillain-Barrè syndrome by Italo Giovanni Savella (Paperback – Jul 7, 2005)

Guillain-Barre Syndrome: 5 Years Later by Brian S. Langton, Sarah Ondrich, and Patrick Hill (Paperback – Jul 10, 2006)

Guillain-Barre’ Syndrome: My Worst Nightmare by Byron Comp (Paperback – Nov 10, 2004)

No Time for Tears: Transforming Tragedy into Triumph by Dorris R. Wilcox (Hardcover – Mar 1, 2000)

Thaw by Monica Roe (Hardcover – April 2008)

Solomon’s Porch: The Story of Ben and Rose by Jane Riley (Paperback – Oct 20, 2001)

Masks by Hatrick (Paperback – Mar 1, 1996)