When does it stop being an obsession?

I think about this stuff everyday, and have since I came down with gbs 11/07… Although, I think now I am thankful for the good things, and try to downplay the bad more…. So its a mixed bag I guess… I think I’m healthier now then pre-gbs, (I exercise, and also made other lifestyle changes) so that’s a good thing…. However, I still suffer from occasional gbs related fatigue, pain, and numbness. I hope someday it clears out of my memory….. Good luck on your recovery…… I would tell you that for me, this was/is an extreme life threatening/altering experience….

wrtrmom,

GBS hits us as a trauma, after we go through the stages of tears and anger we can finally get to the acceptance of GBS and learn how to deal with this
syndrome that has changed our lives.
I got GBS 10/07 and never recovered to 100%.
I live with residuals all the time and they flare up worse any time I over do it.
What helped me the most was good support from husband, family and knowing that there are people worse off than myself.
Bless those that have recovered 100% but those of us that haven’t, GBS will always be with us. We will never like it!

Good luck to you with your recovery.

Shirley

Just an opinion, but I think gbs/cidp stays w/us forever. I don’t really consider it an obsession, but a reality of daily pain and limitations, or in the case of cidp, constant treatments that never let you forget about it. Should God bless Kevin with the miracle of remission in the next year or so, I still think it will be with us daily because of residual pain and the fear of a relapse. Kind of like a scarlet letter. I know this is cliche, but it also helps to think how strong one has become BECAUSE of this illness. Stregnth cannot be measured by endurance alone!! Good luck!!! I wouldn’t worry about thinking you are obsessed, just alert!
DAwn Kevies mom

The worry and fear part do lessen with time, but daily thoughts of what we deal with, what we went thru, what we are left with may very well be with us for the rest of our lives. I was hit in 06 and still think about it daily, feels like constantly because little things remind me of it. It does feel like an obsession, I understand what you mean. GBS is a huge part of our lives and something like that is difficult not to think about. *hugs*

That is a good question. I’m thinking about it myself today. Some days I do almost forget about it, things can be almost normal. Then there are days when I feel like I have permanent brain damage (do other people feel that way??) as I realize that I am so not what I was before this exciting little adventure. It can be frustrating 😡 and disheartening 😮 . But I am grateful to God for all He has taught me through it (well some days I’m more grateful than others) and I’m thankful that feeling good or bad, there are such caring hearts here who will write you a little note of encouragement. And it is so good to know that others out there understand…I can’t tell you how much I appreciate these people that I have never met! May God grant you the strength you need for today and us the faith to leave tomorrow in His hands. 🙂

Julie and all, thanks for the thoughts about this especially the positive ones. I also often feel like it is almost an obscession–since life has changed so much and I feel like I have to think and double think anything I do now–how much will it “cost” in fatigue and in ability to do other things today. A lot of sponteneity has been lost. I was watching a lady the other day as she scurried around doing things and I was so envious of her freedom to not have to worry about how many steps it took or energy in movement. It is like this took over my life and squeezed out most of the fun in life, the sponteity in life, and a lot of the hope in the future–definitely most of my ambition and a lot of pride–in grace as well as being to “fit in” with others. I have never had health issues that persisted before. I spend a lot of time thinking about this illness and how to “live” despite it and what to do about this and that aspect of it. It is getting easier, but it is still so un-natural. thank goodness for work.
WithHope for a cure of these diseases

When does it stop being an obsession?

It is an individual kind of thing. Some get sick, recover and never look back. Others deal with residuals every day, so I would think they would be more apt to think about GBS more frequently.

Two years into recovery… you are still healing and should be preoccupied… seems natural to me.:o

The real question is: does your preoccupation with thinking about GBS inhibit your ability to function? If no, well, life is good. If yes, it might be a red flag to get into therapy.

hello everybody

I had GBS/Miller Fisher in May 08. For the first year I thought about it constantly because of the recovery process, many doctor appointments. sick leave from work…when I returned to work and the doctor appointments became less frequent I started thinking less about it. I still suffer from residual fatigue and my voice has not totally come back to normal ( my throat was paralysed, it was the worst hit part of my body) so these are reminders of what happened to me.

When I feel good in my head I can deal with the residuals and I feel ok and lucky because I can still do so many things and appreciate life but sometimes I find it depressing to think about a possible relapse and about what I’ve lost.

I read with interest the comments that have been posted as I remember vividly realizing that probably three years went by before I was able to spend a day and not think about GBS in some aspect or other. I figure it was 10 years before I really didn’t think of it at all.

Now I am looking at 46 years past. I had GBS at age 24 in 1963, and actually thought it was behind me. When the residuals began to manifest, about 20 to 25 years after I “recovered,” I inquired about a “post syndrome” to be told “no such thing.” So I started a support group, thinking someone might come who had it as long ago as I had – and then we could compare notes. That never happened. That was 1992. The support group is still going; I have learned a huge amount about GBS, volunteered for a committee to help get new groups going and that was 12 years ago and I have friends from all over the world, who I met at the various Symposiums.

I worked with seniors and in the disability community for over 20 years and my experiences proved invaluable in terms of understanding what people were going through, whether older or dealing with a disability. To me it has been an incredible gift. I am still involved with people, via the phone and the internet, on an almost daily basis. It is something I CAN do, as now I have many physical limitations that mean I can’t do what most women my age still do. Now that I have that extra time I get to spend it doing what I love – crafts, talking to people, etc. I have learned to adapt to any changes that occur, but it is not always easy or quick. I have/can come to position of acceptance, no matter what changes. This has not been without the help and support of my husband, children and good friends. It is a joyful, peaceful place to be! I look forward to many more years to come, while appreciating each day in every way. I wish that for everyone.

Maureen

Will say a prayer for your family.
Dawn Kevies mom

GBS isn’t an obsession, it’s the “new normal” for us…ever since things changed when we got sick and our bodies were damaged. And we have to acknowledge GBS in our daily lives, because there’s no escape from it; it’s part of us, and that’s the way it is now.
So we deal with it, and rejoice when there’s any improvement, or when there’s a chance for more hope or recovery. And we fight and struggle to endure and overcome when the symptoms cause us pain, difficulties or more medical problems.
And we continue our lives, and make the most of them the way we are.