Overdone- Stick a Fork in Me

You ask how it is that people find a way through this when there is so much difference in what you want to do and what you can do. This is one of the hardest things about GBS coupled with the fact that the change from doing a lot to not being able to do much is so abrupt with this illness. I do not have answers for this as it is also something that I daily struggle with but what I have found important to do is to think about what is really important to you and to prioritize for that. Two really important things that others taught me. One, at the GBS/CIDP conference one lady talked a lot about prioritizing couple time. It takes work to be a couple. Anyone with especially young kids knows that they can take all your time and one has to make a big effort to keep some couple time. I say this because on the other thread you say that you and your husband are having some problems now. It is important for each one of our special people to know that they have priority with us. Sometimes we have to put one thing to the top of the list, but it helps to remind them that they will be top of the list at other times.
Second, there was an explanation of energy distribution on this forum using spoons posted a year ago–It was called The spoon theory as energy management–have you heard of it or something really close and linked to http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf. You can search the forums and find it also using “Spoon theory”. It talked about having only twelve “spoons” a day to be able to give out to people as an explanation for need for energy conservation. It is a good explanation of the energy steps needed to do things and how we have to conserve them differently. It used to be that getting to someplace was just a given and it was the activity itself and time that was a limiting factor. After GBS/CIDP, time is no longer the limitation as much as having the energy to be able to do something.

I have a couple of other small suggestions about other things you have said before. First, take some time to think about your life and priorities as you go back to stay with your folks for a while. In the past you have been a person that gives to others and finds fulfillment in doing so, so do not forget to prioritize time to help others. None of us can guess what your church members mean about you being self focused–whether they do not understand or it they are worried about you because people do get self focused when depressed or feeling isolated or betrayed due to circumstances. Only you know why you are going back to your folks and there are likely a lot of reasons, but as other said–use this time as much as possible to heal and to gather strength and to find ways to move forward in what is important in your life not to run away from what life is like today. I really hope the spoon theory will help you be able to explain and to rethink about life now.
Sorry I am so long winded, but it really feels like you are reaching out to try to find a way to live with all the changes that life has thrown at you this year and lots of us have been there and struggle with how hard it is to relearn how to live life in a different way and to help others around us deal with the transitions required to change with us.
WithHope for a cure of these diseases

Hi Noni,
I can relate to a lot of your challenges. Forgive the church leaders, because they don’t understand this disease and many others don’t understand either.
My Life flew out of my control when this disease knocked me down, filled me with panic and left me too weak to fight back My Way. I still fought back, though and I think it was Hope that kept me going.
So many changes and adjustments in my lifestyle and I had to YIELD. After 3and a half months of testing, EMG, NCV, Bloodtests galore and Nerve and Muscle Biopsy I finally received a diagnosis of CIDP in Oct., 2008. I feel lucky to have found a great neuro.
Now, a year later I’m being weaned off the prednisone, feeling better and life is a lot more tolerable. I’m expecting to get even better, but there are no guarantees. Future uncertainties such as a relapse could happen. I’m careful to “hope for the best and prepare for the worst.” I’m trying to control what I can. I count my many blessings when the mood prevails.
On certain occasions I feel overwhelmed, over-sensitive or just plain frustrated. Those are the times I try to put into practice a good friend’s advice: “Make like a dog. Just **** on it and walk away.” Easier said then done. P.S. I still have hope!

I DO very well in that process myself, thank you!
While I have the longer lasting ‘version’ of CIDP, I have to tell you that I too met with some scepticism by my own family and friends. Things got a bit more ‘receptive’ when my spouse started to get diabetic neuropathy?
Learning from here and other places, all I did was almost shout: SEE A SPECIALIST NOW! My own issues arent due to diabetes, but we learn and can teach? Relate to others in a way they might have experienced.
Find YOURSELF in this changing self. You know what a good person you are, and you have a lot you can give to the world even not being the normal ‘mobile’.
I often have had to equate my CIDP damages to MS. I hope the MS’ers out there forgive me, but that nasty word, demeyelination is just that – nasty.
It’s simply occuring in a different part of our bodies. I’ve had to do this with new specialists for all the ‘new issues’ I’m having, to anatheseologists prepping me for surgeries, and what all. You say the ‘MS’ word? Many more folks are likely to know someone w/MS. Why that is is a mystery to me, but…. IF I benefit from that MS word mores the better. Thing that scares me most? IS that GBS and CIDP can do as much damage as MS.
It’s hard to try and find ‘descriptions’ that others can relate to. Read, and learn here and all over and find those words that describe you best!
Set small simple goals for yourself now. Do/Learn simple exercises that can help you build back strength [ask your docs for PT?-I’ve never been refused but for the first neuro who I fired] And work slow and steady. IF you get back 70%+? Be happy! IF less, think on it? As long as you’ve SOME FEELING? There is hope!
Do not EVER give UP! Think negatively? What happens? Think positively? What Happens? Thinking positive right now is a HARD thing to do. But, it makes the journey a lot better with the good things you will find along the way! And yes, your life has, essentially, changed a channel! To one you don’t like,maybe? Think on it? When I’d my ‘onset’? I had trouble using that remote control! Kid you not! Go for it good person! Keep faith in your core self and fight it with all you can learn and learn to do more than you ever thought you possibly could.
To others? Simply say I’ve a potentially devastating chronic illness that is progressing, I have to be self-centered a lot as I have to deal with what IT is doing to me and how I can deal with what is now, and what I might overcome. Forgive me IF I’m not my OLD self? I’m in the process of rearranging myself, interms of what I can and can’t do now or in the future.
I hope this helps and my heart is with you!

your thorough comprehension and description with clarity, of all that is on your plate right now, suggest to me you are a person of intelligence and courage.

the folks who wrote before me express well some coping skills that i hope give you some direction soon. i know how hard it is when everything piles up at once with little energy to deal.

hang in noni, one by one, things will resolve. just breathe deeply and pace yourself.

warmly,
alice

Dear Noni,
Welcome to the club!
All of us have experienced similar problems as we deal with this damage to our bodies and minds, and I find that at times I’ve had to stop trying to convince people about it, because it took too much of my energy. If they can’t see that I’m ill after walking with a medical walker and a cane for the past 2 years, then that’s their problem. I just try to focus on what is important NOW.

The church leaders are trying to put a “spiritual take” on your physical illness, but in my opinion, it’s like this:
“If your skin is burning, you’re falling down, can’t control your muscles, etc., you just want to find your bearings and be able to sort through your confusion and all of the struggles you’re enduring now that this has happened to you. You don’t need someone to burden you further with judgment about your “””self-absorption””” or “glassy-eyes” or whatever.
Here’s my motto: If someone makes remarks, I’m learning to say,
“GET USED TO IT, BECAUSE I’VE HAD TO.”
And just go on with your life, because your life is a precious thing, even with the GBS. You’ll sort it out, but most of us here can tell you that we all go through the same stages, the time-period varying with individual cases, but the biggest thing is the adjustment and then coping with the realities of this illness and damage, and then finding joy and purpose and happiness in life again. We’re here for you!
Best wishes,
Your GBS family and friends.