Accepting that you have CIDP?

Looking back, I think TIME was the way I accepted CIDP. I went through the normal grieving process while I lay virtually bedridden in the Mayo for 4 months & all of the months after I came home in the same condition. Although getting high dose cytoxan did give me back a pretty good life, I still need AFOs & a cane when I go out, need at least 10 hr. of sleep a night to function at all, can’t run, always feel the fatigue. But if I get the rest I need, & use my power chair in the mornings to save my energy, I lead a pretty normal life. Actually my life is pretty darn good. But it has been almost 10 yr. for me, not sure when I actually accepted having CIDP, but I just did. There are so many worse things out there, that after awhile CIDP just didn’t seem that bad.

When my daughter was dx’d with CIDP at 4 years old I was terrified. I didn’t know what her future would hold. And just like any mother, I just wanted her to have a happy “normal” childhood.

I started repeating, to myself, “You are the mother of a sick kid”, over & over & over again. It took quite awhile but one day the thought didn’t scare me any more. That’s the day I accepted it.

I don’t think anyone can tell you how to accept it. But I think a good place to start is to write down a list of things you can do every day, every few days, once a week, etc. Start with very minimal things daily. Then as you improve you can add more activities. Even if you just start out with changing your clothes, it’s a start & it’s a task you can accomplish. That way you won’t wear yourself out trying to do everything.

Kelly

Accepting the consequences of (fill in the blank), in this case CIDP, may well follow the standard process of grief recovery.

And, it is very useful to write down what you can do while trying your best to ignore what you cannot do. Any sort of positive Mantra is also good. Recall ‘The Little Engine That Could.’

In fact, there is a formal textbook process for this. Yes, you can get books to read about it, workbooks as well. And, should you desire it, Professional Services to help you work through it all. Some Counties may offer free support groups.

It is called “Behavior Modification.”

Dwelling on what you cannot do and refusing to accept your limitations are a sure receipe for disaster.

I was so ill with CIDP that I welcomed a diagnosis and hopefully some kind of treatment. Then I was in shock for so long that I think it helped. Have I accepted having CIDP?? More like I’ve become “accustomed to it” and what I can still do. I don’t think in terms of what I can’t. I had to tell my friends that I may feel too tired to do some things but please don’t stop asking. I have to give myself time to rest.

I do think it would help you to be able to discuss this with a third person. It is so hard to carry a “pain inside”–it needs letting out. It’s OK to cry.

have not accepted it—-do not plan to until i have done everything in my power to overcome it and get full use of my legs back. Still holding out for that hope of a full recovery. Keeping my skiis and running shoes with full intentions of using them again…………I know I would be much more at peace with it to accept it and slow down, but just not ready for that yet.

Emily, now in 5th grade, came home yesterday (her 1st day of school) and tells me “MOM…you should never say that you are broke”. When I inquired why she says “NASA scientists have proven if you think something bad is going to happen then it will. So you have to ALWAYS think positive”.

So according to my (almost) 10 year old & NASA…THINK POSITIVE THOUGHTS!

Kelly

best of luck with your appt on friday–i hope you get some answers . The mind is a powerful tool so thinking optimistically helps.
Yes i know what you mean about overdoing it—i find when i do it causes fatigue, but i dont THINK it is necessarily causing me to get worse???? Again everyone is different.
I try to lift weights reguraly so i have something measurable to go by in terms of strength. A lot different from my old weight regiman,where i used to mix it up a lot to see gains—now i keep it the same so i can watch for loss.

yes gh-cidp that has helped me a lot too. the first time i went into the infusion room with many people on chemo, and some severe MS cases, i had an awakening–and a whole new outlook on life and my condition.
Fortunately i am able to walk unaided. just slower and it is more tiresome than pre-cidp. Cidp has affected mainly the things i did for enjoyment–sports, hiking, running etc but i am fortunate to still be able to do the daily tasks like working, shopping etc. Being on this site has made me realize how fortunate i am because it could be worse.
none of us know what is in store for us in the future—-a young mother in a town near mine was riding her bike this weekend with her children, hit a pothole, went over the handlebar and is now paralyzed from her neck down—and she was perfectly healthy. 🙁

One thing I’ve learned from these wonderful forum folks is get more than one opinion. Get your notes, questions and concerns together for the neuro appointment. It doesn’t sound bad your doc is sending you to Denver–maybe he thinks the big guns will know more. Knowledge is power.

I have had some bad CIDP days and some due to the nasty predisone drugs I had to take. It sure helped me to cry, get mad and pound a few bed pillows. Sometimes an impartial person may be the outlet we need to vent.

Wishing you well.
Limekat

After four years of searching for answers and going to various doctors, I was actually relieved to get a diagnosis of CIDP about a year ago. That may sound strange but I am the type of person who felt validated. I finally had concrete evidence because of a sural nerve biopsy that could not be refuted by anyone including my insurance company. Until the diagnosis, my symptoms were dismissed by others, even by my family, which was rather upsetting. I had begun to feel like a hypochondriac and was doubting my own sanity.

Now, I am trying to educate people about the condition and I can see the difference in the way that I am treated by others. So, I have accepted that I have CIDP and am making it my life’s task to education myself as well as anyone else who is interested. That is my goal. Although, I have not improved a lot…there is always hope.

MrsJmanning,

Accepting your diagnosis does not equate with “giving in.”

If you break your leg, you wear a cast and use crutches, but you don’t give up.
If you have a heart attack you change lifestyle and try to avoid another
If you have cancer you seek treatment and a cure.

Nothing is different with CIDP.

Recognize what the disease does TO you and try to avoid that. If working 16 hours 5 days a week hurts your body, adjust you work load.

It would be bad to ignore the fact that you have CIDP, because your actions can make a difference in the progression of the disease. I know everybody is a little different in how the CIDP affects them and how it progresses, but some things are true for everybody:

1. Stress is an aggravator
2. Exhaustion gets harder and harder to overcome
3. CIDP does have effects on your body.

I “got” CIDP when I was 31. It was not too bad for 10 years. (41) by the time I was 46, I was on disability. I am now 53.

I can still do alot of things. I cannot do others. I do what I can and stop when I am tired. If I overdo it, I am in bed for a few days. You balance out the pleasure and the pain.

Have I “accepted” that I have both CIDP and limitations? Yes. Have I quit living? Hell no. Do I have to be sad and morose? Certainly not. Can I be happy and enjoy life? Absolutely.

You can see a broken leg. You cannot watch your immune system eating the myelin of your nervous system and causing failure. But I guarantee that it is happening. Accept your situation, but don’t quit. Do what you have to do, b ut recognize limitations. Don;t hate the fact that you have CIDP, but work with learn to live with it and love life.

Good luck with your decisions. We all have sat in your seat at one time or another. Remember, your outlook on life is YOUR choice.

well said Dick S 🙂

Like a few others have mentioned, being diagnosed with CIDP was not only a relief but vindication.

I was stuck in a nursing home and my condition continued to plummet day after day. I was convinced that I didn’t just have GBS. I knew there was something else going on. I just couldn’t figure out what and my neurologist continued to tell me that I was just going to have to accept the fact that I was dealing with a bad case of GBS.

Well, I wouldn’t accept that. This BS was killing me slowly and the mental toll it took on me was unquestionably the hardest thing I’ve ever had to do.

As others here mention quite often, every case of CIDP is different. No question about it. I commend those who choose the optimistic approach from the get-go because having positive thoughts without experiencing positive results just wasn’t going to cut it for me. My mind just didn’t work that way. I needed some positive results before my attitude changed.

Once I was officially diagnosed with CIDP and the plasmapheresis treatments started working, everything changed. I vowed to myself that I was going to do whatever it took to get back to full strength. I was effing sick and tired of lying in a bed.

The way I’ve dealt with this seems to be very unconventional after reading so many stories about how others have dealt with their condition. Not only did I make a full recovery in a relatively short period of time (from completely immobile to full strength in 6 months), but I’ve worked my ass off ever since with no regard whatsoever to “over-doing” it. I bust it really hard at the gym almost daily.

My attitude and health these days is through the roof as a result and I’m in the best shape of my life. I’m physically able to do things I couldn’t do when I was 18 (I’m 37 now). All the hard work I’ve put into it has paid off far beyond anything I could have hoped for 18 months ago.

I’m not at all suggesting that my way is the right way, but my rigorous routine has worked very well for me. Nobody knows how your body feels better than you do so don’t push it too hard until you believe your body can handle it.

mrsjmanning, and emitch74,

Just remember that this is a long road. You will have many ups and downs. You can live a long productive life. You just need to be aware of your body, what makes it better and what makes it worse.

Mental attitude is absolutely a great helper. Realism keeps it in check. If you get too high expecting miracles, you will be let down. If you expect nothing, there is no goals or growth.

Truth, as always, lies somewhere in the middle,

Keep your head up and keep on looking down the road. You’ll be OK.

Take care,

Dick S

Accepting CIDP is very hard. Has any doctor told anyone about possible remission from CIDP? or no remission? I just want to know everyone’s experience. I am only receiving IVIG every 10 days. I relapse when my treatments are changed to every 2 weeks. I do not want to take steroids or immunosupressants.

both neurologists i have seen have said that remission is what they are aiming for.
My regular neurologist said that she was concerned of the ivig because she didnt want my body to become dependent on it—-because she has seen it often??? The plan im currently on is a 16 week ivig schedule in attempt to “reboot” or “modulate” my immune system.
This was Dr. Dycks–mayo clinic regiman. After the 16 weeks i am to see my regular dr or fly back to mayo to see him–is what he put in the plan.
I dont reallty know what she meant by becoming dependant on ivig, because it appears that a lot of people do it forever. guess i wil find out the end of this trial.
They both sound as though the ivig is not something to be on forever–just a step to change my immune system and if it doesnt then on to something different.

I am only on 25 grams of IVIG every ten days, no other treatment. I have been on IVIG for almost 2 years. I have 2 neurologists and they have not suggested any other treatment. I think because I did very well on IVIG. But lately, I don’t feel as well as I did before. I get this fluctuating weakness in my legs. It’s like my thighs feel somewhat “numbish” even though the strength in my legs are okay. Sometimes, it’s hard to explain how I feel to my doctor. Do some people get immune to IVIG? I hope it doesn’t stop working for me. I am going to start taking vit. B12; even though my level was 291; within normal limits. Thanks for your input.

my ivig was like that when i was getting it every 12 then every 6 weeks. I really had to question whether it was working or not- it was so hard to tell.
I think i was on a roller coaster–getting a little better after having it, then getting worse before next dose…over and over and over.. My nerve biopsy showed a pattern of demylination—remylination and i wonder if that was what i was experiencing?
my cidp is very slowly progressive so its hard to tell when its getting better or worse. with the weekly ivig. i have lots of stange sensations, like muscle aches, pains in my toes, but my feet have become warmer, walking is easier, less fatigue.
If the disease is still active after this 16 week ivig trial then i am going to request plasma exchange. I do not want to be on ivig forever. I have read a lot of posts here of people who have put the disease into remission with plasma exchange after ivig failed to do so. Its much easier on the body than prednisone, chemo etc and i would hate to resort to any of them without trying pe first.

I actually believe that it helps to pretend that everything is ok. My friends have been wonderful. I am still up and going but will often not be able to walk well. We just make adjustments to what we are doing. I do get depressed right before and during the IVIG treatments. Mine have been shortened from 5 days to 2. That has helped. Also recently being told that they seem to be workings is great news. [QUOTE=mrsjmanning]I am very positive. Well, I appear to be more positive than I really am. I hide it all. I hide the fact that I’m too tired to do ANYTHING, I hide when I hurt, I hide when I want to cry. I suck it up and tell myself that I’m okay … clearly, I’m not okay.

My neurologist has told my husband that he doesn’t think I understand the severity of what is going on with me. I over do it more often than I should and I don’t rest as much as I should because I haven’t accepted this. I feel myself slowly breaking down. My husband is my biggest supporter and provides me with the greatest care.

How did you accept this? Are there anyways to make it easier? Maybe I need to be scared into reality… I don’t know. But I can’t keep pretending like I’m okay because all I’m doing is making myself worse. I’ve adapted to my wheelchair and my walker, I got used to be being “sick” since I went downhill for 8 months. How did YOU accept this? How do I accept this?[/QUOTE]

I’ve never completely accepted it. Well, I accepted the diagnosis, but I didn’t accept the limitations. Consequently, I push myself a lot, and for me that worked well for a long time. Four years after my diagnosis I was running again, and I was eventually able to get up to 4 miles at a time, which was better than before I was dx’d. You’ll get better. There will be good days and bad days. I hope your good days outnumber your bad ones.

Many good comments in this thread. My suggestion is: try to stop focusing on what you CAN’T do, and instead focus on what you CAN do.

I had planned that when I retired I would work on Habitat for Humanity, because I really enjoyed that kind of work. Now, that is totally out of the question.

But, I have become the treasurer for a small 501(c)(3), something I can do sitting down. I also volunteer at our library, researching the value of gift books – again, something that does not require physical labor. I have also taken a couple of stained glass classes, which I have always wanted to do. Working with glass requires some amount of standing, but some of it can also be done sitting down. So, I fixed up a work bench at which I can sit on a high stool. I still can’t do it for as long as I would like, but I can do some of it.

I still miss long walks, and working in the yard, and the things I can do on vacation are pretty limited. But, there are still things I enjoy, and I intend to get as much pleasure out of them as I can.

So, try to find things that you are still capable of doing, and concentrate on those things. You will find that life can be more pleasant and rewarding than you might have thought.