What a possitive name you've given yourself. Like you, I came down with GBS in Nov. of 2010 and it seems like a life time ago. I had the fairly typical viral "what not" with a fever that kept me in bed (and not on the golf course) for two weeks. The doctor treated me with antibiotics the first week, but when the severe pain set in in my middle/lower back, I thought I would die. He sent me to the hospital where it took three hours just to get the pain under control and I could finally sleep.
I awakened about 3 AM and had no feeling in my hands and feet...calling out to the nurse brought two little (and I mean "teeny") aides who thought they were going to get me up walking. Why...I have no idea. But I protested loudly, screaming that if they put me on my feet they would break every bone in my legs; they persisted and I fell completely to the floor screaming all the way. It was like a nightmare. Two nurses finally came in and got me into bed, raised my pain meds and disappeared. Since I've had a lot of experience in hospitals I knew the only way I would get appropriate care was to get my husband there with me. It's probably the first time ever that we've left one another alone in a hospital, but I was so insistant that he go home and get some sleep he finally did. Instead, at 3:30 AM he's on his way to help me fight the nursing staff and anyone else who might not understand paralyzed hands and feet. Incidently, because you'll all understand this you may think it funny as I do in retrospect: in order to get anyone's attention since I couldn't move anything, I managed to swing my butt a few times and finally knocked the bedpan on the floor. One time I was grateful for a sizable butt. Then I had to get someone to dial my husband's phone number...that's how absolutely helpless one is when your hands and feet are useless.
Because of the "fall" I was given what amounted to a "private" nurse for the next couple days until they diagnosed the GBA. That was of great assistance because the paralysis continued to pave it way up the body, eating up all that lovely melanin I hadn't previously known anything about, and I was a mess. Pretty much from the second day on (for about two weeks) I had almost no memory. I received IVIG almost immediately, but after the 3rd course my kidneys shut down and my heart went into fibrillation. It was seriously touch and go for a few days. My three daughter from the Chicago area were called to come and we waited to see what the virus would do.
After two weeks, I was transferred to a different hospital for more advanced p/t, and after 3 weeks it was decided I was well enough to go home. After I fell down stairs twice at home, my neurologist (I love him dearly) arranged with my family to have me assigned to in-house care at a physical therapy care home. I was there three months and it was like lost time...if you know what I mean. I remember it all, but anything in the world, anything outside of my "Manor" has been lost to me. I had great care and lovely people whom I considered my family.
After finally getting home (is anything scarier than doing your first long concrete stairs after 3 months of no stairs?), my husband and I settled in with him doing absolutely everything except my personal care. I continued to feel better for almost a year, long enough to get myself off pain meds, when I awakened one morning feeling horrible, hardly able to get out of bed, and such a deep depression and weakness I have never experienced before. the exhaustion is difficult to explain, but it's bone deep and I spend all afternoon in bed. It was then time to see the doctor again. This time I wisely saw my neurologist who felt the pain had taken over my body and mind and I seriously needed to get back on narcotic meds and anxiety medication. It made a big difference, but I have never gotten even slightly close to the physical condition I was in prior to that episode. It's been five years and if I hear one more person say "my uncle had your disease and he was completely healed in a year" I may very well smack them.
There is a large percentage of GBS patients who reach only a certain point in recovery...and then it's plateau time. I'm one of those. I see that some of "Ben's Friends" GBS genesis receive periodical IVIG treatment. My neuro and I are in discussions about that...a bit hesitant because of the kidney/heart problems involved with the treatment.
This disease is very nasty and doesn't treat everyone the same. I feel fortunate that my doctors, although not having treated a GBS patient before, studied, called those who were "in the business" and got treatment after treatment going. He also believe that one's body cannot fully recover, not complete physical therapy, without pain control. Here in KS it's very difficult to gain access to narcotic medication, but for those of you who are suffering without it, insist on pain relief. And if that means "throwing a bedpan down on the floor" (don't take that literally, please") do it. Neurologists are best suited to treat GBS and if you're getting no help from your physician, please find someone else. I know that sounds easy, and it isn't, but it's the only course that will help bring you along.
Sorry to be so long winded, but I've been reading about members who are still suffering severe pain, members who have not gotten enough p/t, and members who have no support system. Sometimes you just have to take it up yourself, hopefully with a mate, a family member, or a dear friend...someone to support you at a dr's appointment.
I'm still struggling after five years. I'm completely house-bound, don't drive because of the strong medications, and am still trying to learn to look past the dust on the furniture. But, I have a wonderful husband (celebrating 50th anniversary in May) and haven't given up completely on golf yet.
Peace to all of you. Accept the help that is offered; ask for help when you need it; and, for heavens sake, tell your doctor over and over and over again about your pain and exhaustion. Good luck.