I’m frustrated

Kitti,

I am so sorry to hear about all of this. I understand completely how you feel, I am 37 and had to move back with my mother also when all of this started. Not knowing much about how your disease is progressing and what your mother knows about CIDP, I have some advice for what it’s worth.

If possible your mother needs to understand CIDP. She must not be completely familiar with it otherwise she would understand the ups and downs that go with it. If she is unwilling to accept how CIDP affects you then there isn’t much you can do in this area.

Get ahold of me jerimyschilz at hotmail.com and I will try and help you find state, local, federal govt. programs to assist you. If that is all the aid your receiving, I have a feeling more is out there for you and possibly help you get into a place of your own. Also perhaps the remaining courses for your degree or at least some of them can be taken online from home.

So contact me if you want I have looked into many of these things myself and I am sure I can help you. Take care and I hope today is better for you.

Jerimy

[quote=kittispitz]First of all, I am writing this here so that I will not forget about it …even though it might be better that I do. I am 30 years old, and was diagnosed with the CIDP just before I turned 29. I had been living in my parents home while taking computer aided drafting classes and helping care for my grandmother, who moved in with them after she had a stroke…thankfully she is much improved now.
Just as I was graduating is when the disease began to hit me, so gone were my plans to land a lucrative CAD career, at least for the time being. (I still hope to be well enough some day to take a refresher course and continue).
My major problem at this time is my relationship with my mother. She has told me that she wants the best for me, but most days she is just demeaning and rude. I have insomnia, she says it is all in my head; I do what I can to help with housework…sweeping, dishes, preparing and cooking lunch and dinner, keeping a clean kitchen, and grooming Molly dog; yet she asserts that I don’t DO anything. If I ask to borrow some money I feel like I am committing a crime because I don’t DO anything. I get 102 bucks from the SRS office per month…It is nowhere enough, especially since I usually drive into the city (roughly 20 miles from the house) during the eveninings so that I can spend time with my best friend for 12 years, whom my dearest mother pronounced a Peice of **** about 2 days ago.
I could go on and on, but screw that…my last complaint for today is (and No, it is not the ONLY complaint left) this morning as I am waking up I hear her telling me to get my lazy *butt* out of bed, before I pee in it and blame it on my [I]Disease[/I]……………Nice.
I’m frustrated. I’m frustrated. I’m frustrated. I just need to get on the housing list I guess.[/quote]

I am so sorry you had to be affected by this syndrome at such a young age. I was almost 49 & am still angry about it. It is even harder when the people who are supposed to love us can’t understand how difficult it is to try to make damaged nerves work all day, & the resulting fatigue that goes with it. No matter how tired I tell my family I get, no one can really understand it. But I did have a very severe case of CIDP & was in a power chair for almost 3 years. I now walk with AFOs & a cane, but everyone seems to think that I am sooo much better, when in fact, I feel pretty crappy most of the time. If your mother doesn’t understand by now, she probably never will.

What I worry about more for you, is the stress you have to live with. To me stress & lack of enough sleep are our worst enemies with this illness. If you can’t work things out with your mother, try to find alternative living arrangements. I know, easier said then done. I have a 30 year-old daughter & would be devastated if she came down with this illness. I already have a 25 year old son who is a para from birth, but at least he feels good. He has always required a lot of sleep since birth, but I could understand that, as everything he does is harder for him than for a normal person.

Kitti,
I am sorry for what you are going through. My daughter is now 10 years old, she got CIDP around 9 – 18 months old. I guess I was kind of in your Mom’s position because Abby couldn’t tell me or discribe what she was feeling cause she was so young. Talking to others who have CIDP has educated me the most. The GBS Foundation has some pamplet on GBS/CIDP caregivers information and ungerstanding, there is also a DVD that is on CIDP the foundation will have available soon.

I know it sounds like your Mom is not ready yet but if you ever feel that talking to another mother would help, Just send me a private message with your phone number and I would love to share with her.

You have found a good place here on the disscusion boards, everyone here is willing to share information, advice and even jokes, Welcome.
Cindy

Hello Kitti,
I’m another one who can understand the frustration and stress you feel. I too live with my mother, so you’re not alone. I have a wonderful understanding mother though who feels great compassion for me, but she is in declining health and I’ve become a caregiver to her, as well as trying to care for myself. I have CIDP. Frustration is frustration whether you have a mom like yours or like mine. I live in my mother’s home, I’d love to have my own again.
Maybe Jerimy will be able to help you so that you can find a better life.

Kitti,

Perhaps getting the brochures from GBSFI foundation (free to you on this website – go to Home page) and printing out some of the reports from other areas of this forum written by medical professionals and giving them to your mother to read , might help her to understand what you are dealing with.

Sometimes telling someone isn’t the best way to convey information, especially if the relationship has deteriorated.

Best wishes,

Suzanne

I’m So Sorry Your Going Through That. I Also Feel Stress Makes All Side Affects Of This Disease Worse. I Have A Question, How Was Your Relationship With Your Mother Before You Became Ill? Have You Taken Her With You To The Doctors? Maybe You Could Take Her With You And Prior To Going Ask The Doctor To Help Educate Her. I Also Had To Print Out Info About The Disease For My Husband And In-laws. They Would Say They Understood That I Was Ill, But They Didn’t Get It. After I Printed Out The Side Affects And Put Them On The Refrigerator For My Husband He Seemed To Undersand More When He Had A Reference To Look At If I Was Having A Really Bad Day. Good Luck, You’ll Be In My Prayers.:)