Thank you so much for your replies! Thanks, too, for the information. I guess I was expecting too much from the infusion treatments.. It is validating to hear that there are others out there who understand, and who have experienced what I am going through.
You know....with all the reading and research I have attempted to do, I have gotten precious little in the way of information. Everything I read seems like the same damn thing just said in a slightly different way. They make it sound like ...."GBS is really serious at first, but almost everyone recovers completely in a year or so, and chances are you will too" or something to that effect. At least, that is what I have been able to glean from it.
At first it gave me hope, but it turned out to be false hope. After awhile I began to feel like I must be the only one who is still sick after all this time. Then I started thinking I was being a baby about it, and I should push myself harder. But that turned out to be a really bad idea. When I push myself too hard, I end up setting myself back rather than getting stronger. Thats one of the things I cannot seem to make anyone understand. They think that if I work harder at it, I will build up my strength. While that is true, its a fine line. If I push too hard, I loose ground rather than gaining it. Its not like an injury or something..Its unlike anything I have ever had before.
I am sure most everyone that knows me well and loves me enough to have read a little bit about GBS has read the same information that I read, so they probably think I should be better by now. They assume I AM better now. When I explain (over and over) why I cannot do the things I use to do, or why I am so tired, or remind them that I live with constant pain,or I try to explain why I need a nap when all I did was prepare a meal, clean up, and take out the garbage... I don’t think they really get it. I don’t really look any different....but I am not the same person I was before I got sick.
I don’t really know anyone else who has had this disease personally, just online. But among those who have actually heard of it, it is rumoured there are a few people who know someone whose ex sister in laws college dorm mates second cousin had it and made a complete recovery, and now he works twelve hours a day lifting huge blocks of cement, so its really not that bad after all! Or they knew someone from work twenty years ago whose brother had it and now he is walking on his hands while juggling flaming swords with his feet......So I shouldnt worry. I will be fine! Or their grandmothers neighbours daughters best friends ex husband had it and made a complete recovery. He had it so bad he had to be intubated, spent two weeks in ICU, and before you know it, he was breathing on his own, he was back to work within six months, and now he can recite the periodic table of elements under water, in German, backwards in one breath. (funny, nobody ever remembers the actual NAMES of these extraordinary people, or where they live, ...and I am starting to wonder if they actually exist!)
From the very beginning, from when the symptoms first started, one of the most frustrating things was the fact that nobody believed me. The doctors minimized my symptoms, and I kept getting worse and worse and they kept giving me pain killers and sending me home. I almost died because they refused to admit me to the hospital until I was completely paralysed and in excruciating pain and both my mother and my daughter threatened to sue them if they didn’t do something.
. And now, four years later, I am still sick, and it seems like nobody (except people on here) really understands why I am sick, or even acknowledges that I am sick. I mean....I am supposed to be better now. Right? Everything they read about GBS says so. All the websites say so. All the information out there agrees that most people have a complete recovery within a year or so......So what the hell is wrong with ME. Right? Everyone agrees that I should be better by now. Therefore, I must be. The books say so.
Seriously.....I hope most people DO get better quickly....and I am sorry for the other people who don’t, and who are suffering the same way I am, but I am also glad I am not alone. Its comforting to know that someone understands, and that I am not crazy.
Thank you again for your thoughtful responses to my concerns! It means a lot that you took the time to answer.