CIDP diagnosis ’87-others?

I am a newbie to this site as well. My CIDP began over ten years ago but was only diagnosed six months ago. My situation is different from yours yet similar at the same time. I am 54 years old, married (30 years next Jan.) and have three great kids, 19, 23 and 25 with one grandchild.

As I approach the end of my career, the next 10 or so years should be my best. I should be making my top salary, getting the bonuses, etc. but that’s gone, no money, no insurance and most awful no more interaction with collages and customers – no more challenges.

My kids don’t understand the fatigue and think I am lazy and causing their mom to be overworked and over burdened, and she is all that and more. My wife said to me the other day that she didn’t “sign-up” for this and now that I have SSI I should think about moving out. I think this was the stress talking but wow…

My symptoms continue to add on and the new neurologist said she thinks that the length of time I have gone without treatment will make it very difficult to get my condition under control, we shall see. For me, the last ten years of fighting and investigating and researching, trying to find out what was wrong with me kept me sane. Now that I know, I must face some really intense decisions for my treatment and for my life and I just might shed a tear or two over the next couple of years.

What I want to say to you is that you should mourn the loss of the years you can’t get back, its natural normal and healthy. Write down all the things you missed then burn the list and bury the ashes – let the past be gone.

Now remember, every day is a gift, every step a victory, every set of stairs a battle won and every time you hear the giggle of a baby and a smile comes to your face you know the joy of living and the promise that life, love and living will continue to be with you always.

A bit of a rant (and thanks for that) but I wish you all the very best. Remember that old silly line; “tomorrow is the first day of the rest of your life”, just go make it happen – God Bless.

I was diagnosed with a peripheral neuropathy in 1989, but it wasn’t very severe so I didn’t pursue an exact diagnosis. Actually the neuro told me to quit wasting my money on Dr. visits, get rid of some of the stress in my life, quit drinking and the symptoms would go away. Well, now that Peripheral Neuropathy got diagnosed as CIDP a few years later and now I am on disability.

You know, maybe if I had been more aggressive about my diagnosis in 1989 I could have gotten a diagnosis and treatment and I wouldn’t be where I am today.

..If “If’s” and “but’s” were “candy and nuts”, it would be Christmas all the time.

I am where I am and need to deal with it and make the most of it. I stopped being bitter a long time ago. I still get PO’d sometimes, but much, less often. It is wasted energy.

But, yes, I have been dealing with this for a long time. It is frustrating, I think about it every day, every step, every hour, it dominates my life. I suffer with a lot of pain and it limits what I can do, and how comfortable I am when I try to do things.

But, I do what I can, and when I can’t, I don’t. I still choose how I live my life. I am in charge of what I do and of how I think. As long as that is like that, I can live.

Have a great day !!

One Small step

Your life is your business, and I shouldn’t interfere. But I couldn’t help but notice a couple of verry common things in your post, and things that will lead to disaster in your personal life, and then difficulty with CIDP unless you deal with them.

Spend some time educating your family about CIDP and its effects on your body. I know that you would rather work hard and do things, but fatigue, pain and other symptoms may be causing you to be doing less around the house. The more you do, the worse your CIDP will get. You can do some things, but there is a balance. If your kids continue to think that you are taking advantage of your wife and their mom, they will villify you.

The comment “I didn’t sign up for this.” My wife said the same thing. She didn’t know how hard it hurt. You are in a situation that you cannot change and you need help. Someone needs to step up and give you that help. It needs to be them. Rather that condemn you, they need to help you. But they cannot and will not help you if they don’t know how. I helped fix my situation by sharing information with my wife. I told her what I could do and what I could not do. I told her I wanted to help and do things but could not from time to time. Some days I could, but other days might be bad days and I needed rest.

If you don’t tell them, they can’t guess.

Stress is a major multiplier of problems with CIDP. If your CIDP is giving you problems AND you have stressors at home AND stressors at work AND money stressors AND other stressors, your CIDP will not improve, it will get worse.

You said your marriage was 30 years. If you have made it this long, you know the things to do to get past the rough spots. I’ve been married 26 so I know where you are at. I have 3 kids as well, 24, 22, and 20. I love them all and would not trade anything for any of them. My life would be so empty without them.

I would hope your wife would not bail out on you just because you got CIDP…..

Dick says it all. I had GBS in 85, with total paralysis, so I’ve been through all of the emotions you have vented, as have most on this site. Unlike most others, I got round 2 with the CIDP dx in 96, so I pretty much knew what to expect, but it was no easier the second time around. I pushed and pushed, until one day I chose to make some life changes. Took medical disability and within weeks the reduction of stress improved my quality of life tremendously. Found I had the energy to do things with my family. Because of the GBS, my family knew the similarities of CIDP and are very supportive, and understand there are days when I simply can’t do things with them. I get frustrated some days, but no anger as it only eats away at you. But when I can, I take full advantage of the good days which makes the bad days easier to handle. I have been blessed with a wife of 47 years who has stood by me not once, but twice. She has had more than her share of “the worse” part of our vows, and I thank her every day for her physical and moral support. Hope your family will understand the disease and be supportive. Best of luck, and always be thankful the things you can do, and don’t dwell on those that you can’t.

I wanted to post a quick comment….

I totally understand these posts as I was diagnosed with GBS when I was 25 years old. Prior to GBS, I was very athletic and somewhat outgoing. The support system I thought I would have never materialized and that’s fine….it made me stronger. However, there are things in life I intentionally avoided, including long term relationships as I never wanted to be a burden on anyone. At times I mourn my decision not to form a lasting relationship as I truly wanted kids; on the other hand, I’m glad I chose to remain single as it was devastating enough to know my family didn’t care enough to help. If I had to endure the same or the “stress related comments” from a spouse, that would have hurt worse.

Stay strong, celebrate everything and take care!!

Edited to add; I hope my comments about things stated by spouses’ aren’t inappropriate. It’s just disheartening and sad to read these statements.