When does it stop being an obsession?
AnonymousAugust 30, 2009 at 1:12 am
When does it stop being an obsession?
When does having GBS not be your second thought of the day (going pee is your first)? Does there come a time when it doesn’t dictate what your day is going to be like?
I am a “new” sufferer, having being hit with it just a few months ago. Today I tried to go shopping. I couldn’t make it through the new Walmart superstore. I don’t use a walker, although my residual is in my feet, I thought I could last a few hours. Apparently my body doesn’t listen to my mind.
A very close friend is a breast cancer survivor, ten years. She said it took her almost two years to learn how to live without thinking about it every day. The scars where her left breast was is a very physical reminder, as we all have in one form or another, no longer scare her. Does that happen in our case?
I wonder how you, who have had it for a while, deal with the constant explaining about GBS, the residual symptoms that hit you out of the clear blue, and the wondering if it will come back full bore. When do you stop being aware of every twitch and sore spot on your body? When do you stop being pissed off that you had to cancel your face lift and tummy tuck because now you are afraid to get surgery?
I realize that we cannot compare our experience with others who have had life altering illnesses, it is the proverbial comparing apples and oranges, but I am interested in what fellow GBS sufferers think. Hummmm, if a person with diabetes is a diabetic, are we gbsic? And, gramericly speaking, how is that a person became the disease?
AnonymousAugust 30, 2009 at 11:50 am
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….
AnonymousAugust 30, 2009 at 3:15 pm
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.
August 31, 2009 at 10:25 am
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
August 31, 2009 at 3:38 pm
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*
AnonymousAugust 31, 2009 at 9:00 pm
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. 🙂
AnonymousAugust 31, 2009 at 10:40 pm
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
AnonymousSeptember 11, 2009 at 3:08 pm
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.
AnonymousSeptember 12, 2009 at 5:10 am
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.
AnonymousSeptember 12, 2009 at 8:17 am
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.
AnonymousSeptember 16, 2009 at 12:52 am
Friday night my husband had a heart attack. I know the symptoms, and I was able to get him to the hospital quickly. They did an angeoplasty and were able to remove the blockage. He was released on Monday.
I took him to the same hospital that he took me to in May. One of the doctors looked up and almost yelled at me, “are you OK?” It was almost comical.
So now I am worried about and nursing my husband, as well as taking care of myself. Thank goodness our children are old enough to help us.
My husbad was scheduled to get a knee replacement next week, now that has been posponed for six months.
The both of us are limping around (my feet are still numb/painfull) the house.
So, just to re-cap.
May 13, I had a brain tumor removed.
May 20, taken to hospital throwing up thinking it was something to do with recent surgery.
May 26, diagosed with GBS. Rapid onset, on a resperator..you guys know the drill..ICU, CCU, eventualy on a ward.
July 14 re-hab hospital
July 31 released.
Sept 11 – back to first hospital with hubby
THATS IT.. I am not going to, or taking anyone to a hospital for a long time!
I have had enough ot them!!!
Pity they dont give frequent visitor miles, I would have earned a trip to Hawaii
September 16, 2009 at 2:13 pm
Will say a prayer for your family.
Dawn Kevies mom
AnonymousOctober 5, 2009 at 1:38 pm
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.
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