GBS strikes everyone differently. The physical impact can be debilitating and devastating. The physical struggle takes so much effort, can be so painful, and extremely exhausting.
I've dug deep to cope with the pain, the loss of motor skills, and the fatigue that is the monster that has dug his claws into me, never letting go. I've tried to adapt not working for a year, and finally losing my job. I've applied for, and received SSI Disability, received my handicap parking tag. I was a healthy, strong, powerful, agile 57 year old man who now walks like a frail old man. When feeling good, I can accomplish some household tasks before I hit the wall. I've been able to mow both the front and back yards, both of which are pretty small. But the next day the feet and leg pain attack with a vengeance. The burning dances around my arms and legs. I've been learning to moderate all daily activity just to give the minimal appearance of normality. Moderate, meaning doing nothing to wake the monster.
But after 14 months of "recovery", where I am actually worse than when this journey began, I am tired. Just so tired. The neurologist informed me that I've gained additional peripheral neuropathy, and advised me that my present condition could be my new life reality.
The fatigue monster that has dug into my very being, whereas before this began I could walk all day, was very strong and powerful. Now without notice this fatigue monster crushes my soul in his jaws just to remind me how very weak I am.
The most effective pain meds have lovely side effect such as short term memory loss, weight gain, and increased tiredness. My sharp brain that served me well in the technology business now betrays me by forgetting common words and forgetting short term events. My family doesn't trust I know what I'm saying anymore.
I missed my 40th high school reunion for a couple reasons, but mostly I did not want to go looking infirmed. I am beyond weary of having my 15 year old daughter think of her dad as weak. I cannot bear to continue to watch my wife work months on end without a day off, picking up freelance work on top of her regular job just to bring in income. I am embarrassed seeing her work 10-14 hour days on end while I can't even keep the house clean.
I am embarrassed that I have had to finally declare bankruptcy; I feel I have failed my family.
Before now I was doing pretty good handling it all. I thought of it as dealing with the weather; the weather just IS, as the GBS just IS. I get to choose how to deal with whatever the weather is, and I got to choose how I wished to deal with the illness. I have been in counseling throughout, and that has helped. I have had warm water PT, and worked with a pain clinic. I have tried different alternative healing modalities, and I have felt the effects of them. I believe in the efficacy of them. The effects felt good, but provided no healing.
I will continue to endure, I guess I feel there is no other choice. But I am so tired.
Tomorrow is another day.