Fifth Anniversary of onset
AnonymousJune 23, 2007 at 11:51 am
It’s been five years since I came down with GBS. By most accounts, I would say I was pretty lucky because I had what I thought was a pretty mild case. I wasn’t intubated and I managed to gain all my strength back. I did, and still have some minor pain, but it was nothing compared to having broken a couple of vertabrae a decade earlier, so I can live with that.
My neurologist asked if I would be willing to come back to his office at the one year, two year and five year anniversarys of onset. He wanted to do nerve conduction tests as part of his own continuing education. He says medicine is a practice, and these tests may help him become a better neurologist. Since he works out of the largest trauma center in the area, how could I refuse? He will see more GBS cases and a few shocks is a small enough price to pay to help future victims of GBS.
One of the things the good doctor commented about was that I had much worse residuals than he imagined I would. I recovered very quickly. The nerve conductivity showed a lot more demyelination then he thought I should have. His conclusion was that I was in very good shape at onset and I worked out regularly after onset, and that was a major factor in mitigating the damage.
Psychologically, I feel pretty depressed about the five year anniversary. I have had unrelenting fatigue, every single day for five years straight. I was hoping to see some progress in that area, but there has been absolutely none. It’s not the fatigue so much, as it is the mental state of the fatigue. I am crabby and grouchy every Thursday and Friday night. A 40 hour work week is just too much especially when you throw in being a full time father and husband. My family has been very supportive, but I think they deserve better from me. Maybe there is some life lesson in all of this for my children, but I’m just not seeing a whole lot of upside to it all.
Perhaps there has been some progress with the fatigue, and I just adapt to the progress so that I can do more things. Energy management is now second nature to me. Any thoughts from someone who has had GBS for several years would be helpful.
I also want to say that I am sorry that I haven’t been on the forums as much as I once was. When GBS was something that you had and got over, it was a whole lot easier to try to be a positive inspiration to the members of the forum. Now that it is a long term grind, it is harder to be supportive. Basically, I’m tired of being tired. I just want to get through the week and endless talking about GBS doesn’t make the grind any easier.
AnonymousJune 23, 2007 at 4:48 pm
lee, hard to say happy 5th, so i’ll just say i acknowledge your 5th. go get drunk. i say this only partly in jest. well, maybe not exactly drunk, but maybe you should have a few drinks a few times a week to help ward off the down feeling. never give up. never give in. sometimes easier said than done, no? can’t you work a little less? or give only 90% at work instead of 100%?
‘My family has been very supportive, but I think they deserve better from me.’ that may or may not be so, but you can’t give what you don’t have & no one expects it of you.
you’d really feel better if you could do less & rest more. i know i harp on that to all, but it the underlying basic truth for us gbsers. good to see your post. take care my friend. have one for me. gene
AnonymousJune 23, 2007 at 7:23 pm
Lee it may be your 5th anniversary but the residual is what I heard most people say is the worse thing to get over with. You may have to give in to the fatigue. If it bothering you that much then it means what you are doing is to much for your body. You are not the same person that you were before GBS. Once you accept more of the new you and slow down your life to accommodate the fatigue and residual you will love life more and won’t feel so down. You may have all your strength back but it may take longer to recover that strength then it would in the past.
I don’t have all my strength back and I still work full time and the fatigue is a killer sometimes. It is like some people can go on 5 hours sleep but sooner or later it will catch up to them and with you the fatigue is your signal to slow down and enjoy your family more.
Also getting a professional counselor to talk to might help you sort this out.
Good luck and congratulation on working 40 hours a week
June 23, 2007 at 10:32 pm
I’m approaching my 6th anniversary and still suffer from fatigue just as you. I have learned that if my body wants to sleep—lay down and do it! I have some neuropathy in various places on my thighs but, hate to say, I’ve gotten use to it. I haven’t seen my neurologist in a couple of years but feel fine. She did the dreaded NCV test and an EMG last visit and it hadn’t changed in a year. I read an article awhile back that said researchers had found that Neurontin had been found effective in the “treatment” of hot flashes in menopausal women so now my gynecologist prescribes it!! I’m down to 200/mgs a day and will probably back off it once the flashing finishes—whenever that happens!! :confused:
Take care—each day is an adventure!
AnonymousJune 25, 2007 at 3:26 pm
I hear you… 40 hours a week is a bit much and I know that too well. I dream about working a four day week – not 40 hours, but 32 or whatever is the minimum for insurance. But I do not believe my work would go for that. My boss doesn’t understand (and doesn’t want to), but accepts that I have a chronic illness and I usually miss a day a month with being in bed totally exhausted.
I don’t know which is better – being married or single in this scenario?!?! I get very lonely sometimes and my cat can do only so much for company. So we are given the path we are on and can’t change that. Well, technically we could change a few things… but with having had (or have) GBS is a different thing. Fatigue is not my friend and I get very angry sometimes. And sometimes I try Gene’s remedy of getting drunk – I don’t do that well and the next day my muscles hurt real bad.
Okay, Lee, we are back to “one day at a time.” Try not to overdo it with anything, including posting here where we can get trapped in the poor me syndrome. However, this place is the best when I get that way – we can do this together. It is good to see you posting some – you were gone for a while and I was worried.
Oh geeze, I meant to post a simple “I understand” and leave it at that. So sorry for my rambling…
AnonymousJune 25, 2007 at 4:11 pm
Hi Lee and all. It does a body good to read your posts–as always. It is hard to be the brave trooper all the time, we have to let the sad/angry/frustrated feelings out too. So thanks for braving that as well.
I’m only one year out and feel very grateful to be as strong and recovered as I am. Having said that I can also tell you that I sleep much more than I use to and have come to accept that’s just part of the deal for now and maybe for always. It doesn’t matter because as it’s already been said, I take this as I take life, one day at a time. I have grown use to the pain in my feet, even the occassional stabbing random pains in my body, and the other reminders that GBS has left in its wake.
Fortunately for me I’m on the upside right now but I know I could easily wake up and feel all the frustration and depression that comes with having your life turned upside down. I expect I’ll have to wrestle with those feelings a few more times before I’m done with this body. And I’m grateful you guys are here because I’ll need you when that time comes–so thanks to all of you.
We’re different because of GBS. The thing that sticks with me the most is that I have to constantly be watchful of how I’m doing, do I need to rest, do I need to eat, am I overdoing it, am I willing to pay the price, etc., etc.? I don’t really expect to return to how I was before GBS but I do hope to continue to improve. Maybe I will get back to that state and maybe I won’t.
GBS isn’t the only illness that leaves people in this prediciment and I try to remember that. I still think of GBS like a bad case of the flu or some other stupid illness that I had and am now ready to be over. Ha ha! Oh well, it’s part of a deep rooted system of denial.
I have a friend who had a very aggressive form of breast cancer, had the chemo, a mastcectomy, and some more chemo. She has written in her journal every day since her diagnosis. Not me, I just want GBS to be behind me and something that I can forget about. This is not to be and probably a good thing. I can serve as a reminder to others who know me to not take their health for granted as I did (and naturally so as I was very strong, active and healthy).
Sorry I don’t mean to be so preachy this is what I was inspired to share. My hope is that each of us gains strength from our stories and our progress. And that we progress towards healthy, strong, independent, abled body living free from the ravages of GBS, CIP and CIDP.
AnonymousJune 26, 2007 at 3:14 pm
Long time no hear. Fatigue, fatigue, fatigue.URGH!!!!!!!!!! I hate it. Well, almost as much as endurance. I can do some things for a little while and then ca-poom! I too, work 40 hrs and I wish I could just work 32. it would be so benificial and helpful for me.Life just doesn’t work that way. It is so hard getting through that 4th and 5th day.Gene is always saying rest, rest rest, but somehow i can’t seem to sleep because of residual pain or just insomnia. I get depressed sometime and then I have to grab myself and say GET OVER IT! I think it will always be this way and I’ll jusr have to live with it. Please take care of yourself and I’m with you. xoxoxoxoxo Roxie
AnonymousJune 26, 2007 at 3:24 pm
I hear you all with the 40 hour bit. It drains me too. Wish I could drop a day as well, but that means no health insurance. I am with gene, Lee, go have a drink – actually, it works for me now and then! 😀 My residuals have been acting up too lately. My house wont clean itself though. 🙁 I am trying to sleep longer, but that is a joke being mommy to two young boys. I like your sayiing Gene, never give up. never give in. It has kept me going. Thanks so much for keeping me going Gene. And Lee, one day at a time. I hope you feel better soon.
June 26, 2007 at 4:58 pm
I wish I could say I’m all better, and its all behind me now. But thats not the case. In Feb. I started taking antidepressants, that seems to help a ” little.” I have my own business and go in for a half a day 7:30 till noon or so. But then come home and sleep on the couch for a couple hours. Then for the next hour I’m to groggy to to do much. About 3 weeks ago I was out working around the house on a saturday and I put alot into it. Rested and did some more in the late afternoon. That was the most physical I been in awhile, but the next day I really felt it, (couch potato all day).
I haven’t been on the site much either it starts getting to me. We all have our cross to bear (I just wish it would lighten up a bit) 🙂 I go to work and people ask me how I’m doing, an I put on the happy face and say “Great, almost there.” And then get off that subject and on to business.
Stay tuned movie at 11:00. “Great Almost There”
I’ll give you another update in about a year.
Good Luck to everyone…
AnonymousJune 28, 2007 at 1:43 pm
O! Dear Lee,
Good to see/read you’re posting.
Are you a mind-reader? My case is ditto like you but you are much better at words and presentation. We cannot leave though it is hard to work for 40 hours. Here in India, we work 48 hours in a week, (to be exact 54 hours, from 830 hrs to 1730 hrs. on Six days in office). Plus growing age and post GBS condition adds the fuel. We have to continue to earn for our family.
Let us do our best as many years as we can.
AnonymousAugust 25, 2007 at 12:30 am
Post GPS ten years here, Lee, I can relate to your note. I have had a hard time with jobs, been through many over the past ten years, mostly due to fatigue and depression- currently unemployed…again. Glad to see you keep a positive outlook, which reminds me to keep trying. Tired of being tired is a comon theme here, but look at the bright side: we are alive today!
You must be logged in to reply to this topic.