Planning a Future
One of the things that caught me when I read your post was, “Really need to know so that I can plan my future”.
I have had CIDP for about 12 years now. I have had my ups and downs, but I have been currently “stable” for about a year now. I still have IVIg monthly, and still take pain meds, but the deterioration has slowed.
BUT, I have been in the place where you are…thinking that “if the treatment works, I will be back to normal in x – x months.”
When nothing really brought me back to normal, I got quite depressed. I started going to a therapist who specialises in chronically ill and terminally ill people. She really helped me.
The nature of these illnesses are that we just don’t know what is coming. We aren’t going to die from this, but at the same time, we aren’t able to plan as definitively as we might like. I love control and structure in my life, and CIDP is the antithesis of that.
The important thing is that you have to enjoy the life you currently have. Nothing stops you making plans for the future, you just might have to modify them! And what’s new about that?
One of the things that really resonated with me was that the WORST thing we could do is worry about the future in terms of what lies ahead in the disease, i.e. “how disabled will I be”, “WHEN will I be better?”,:mad: because then you lose today. If you decide to put something off now “until you are normal”, you might lose it altogether.
What I have found is that I have to look at things in a different way. e.g. If you can’t spend long in the grocery store standing, get your 11 year old to do all the running around, searching for bargains while you sit down! Or, have a set of things in your day that you feel are non-negotiable, i.e getting out of bed before 8:30 am, getting some exercise, cooking dinner, that give some routine and structure to your day, and then, even if you don’t accomplish anything but that – at least you did the non-negotiables!
Don’t give up – absolutely! Change your expectations – yes – but it is hard! Enjoy each day (if you can) — YES
I know I sound like a cheerleader – all I can say, is that it worked for me. Abit like cognitive behaviour therapy – yup, kinda – but at the same time, here I am 12 years later, still fighting, still adapting (i.e. not able to work anymore for pay, but trying to give back in the community to keep my brain active), and trying not to worry!! Doesn’t always work, btw :rolleyes: