just want to ramble….
AnonymousApril 10, 2007 at 11:13 am
So here I sit almost exactly 1 month since GBS attacked me. I figure you guys understand my frustrations – mentally and physically – better than anyone. This has been the hardest part of my soap opera – being hospitalized for 10 days for an unknown reason. Turned out to be food poisoning (Campy). Then the GBS. (Oh, + I developed 2 LONG superficial blood clots in my forearms after my IVIG treatments)!!
Fortunately, my GBS only attacked from my hip area (S-1 vertabrae) down to my feet. But I did get that unusual form that attacked the wiring of my nerves, not the insulation – AMAN. Is there anyone here with that form?
I did the IVIG treatments and on my last day, I began walking again!!! This was a big shocking thrill for everyone!
Unfortunately, I haven’t seen much progress since. Actually, I took a step backwards if you will. Just a 1/2 mile walk with my husband and kids threw my legs floppy and uncontrolled. Several days of resting took care of that. This whole ordeal from the food poisoning to the daily battles with GBS has just been…I don’t know….crazy.
I feel stuck at home, except my twice a week appointments to the physical therapist. Those are okay…I leave soo exhausted just from the silly exercises!
My husband and I have discussed possibly getting me a different car. I have good enough control of my right foot to pivot on the pedals, but no control of my left foot to drive my stick. So I have to rely on others to drive me around. No freedom…sniff sniff…..
Neither my p/therapist, my neurologist, nor my mom who’s been at my appt seem very optimistic that I’ll be 100% within the next few months…hopefully year though. I do what I can. I can do quite a bit really! I try not to let this affect everything I do. I know, it could be worse!
I’ve kept my spirits pretty high and try not to let in just how frustrating this is! To anyone on the street…it really doesn’t look like I have a problem. Even some of my co-workers are shocked!
Okay enough rambling and whining……
PATIENCE PATIENCE PATIENCE…that’s what I keep telling myself…I know, it’s only been a month! But I do start to wonder, will it ever go away….I’m only 30, yet feel like I’m living in an elderly person’s body sometimes…
Thanks for reading guys. This website has been so helpful 🙂
April 10, 2007 at 1:26 pm
I don’t think you are rambling! I do the same thing, my 10 year old son has cidp or aidp. You are soooo right, everything does LOOK so normal, kids don’t understand why Kevin can’t do the mile run in gym class or sometimes has to take a break. He is developing a tough exterior when dealing with peoples doubts, as well he is developing great coping mechanisms. We both remind each other when either of us is sad that things could be worse. Just this past Saturday, Kevin’s best friend was diagnosed with legg calve perthes disease. He is in the advanced state and will probably spend most of his childhood in braces and eventually a wheelchair until he is old enough for a hip replacement. (it is a degenerative bone disease) So when Kevin thinks about that or the children who take insulin shots three times a day, he feels lucky. I think that whatever weaknesses you or any members of the forum have, you compensate and make up for them ten fold in courage, character, compassion, understanding and love. I know that you will eventualy get through this and whatever does not heal 100% you will increase somewhere else 200% Good luck and stay strong! Dawn:) 😉 😮 :rolleyes:
AnonymousApril 10, 2007 at 1:35 pm
First a big cyber hug for you!!! Yes, do come here and vent often – every day if necessary. One-half a mile walk is way too much for you. In a few months maybe, but girlfriend you have got to rest, rest and get more rest. It is very frustrating… I found my sleep was my best friend and looked forward to some fun dreams where I was doing things that I could not in life. I’m still that way. Some days will be better than others. One of the hardest issues of this type of illness is acceptance. If you are as hard headed as I am, it may take a few years to realize and accept that your life has changed. It will get better, but chances are you are going to have to take care of yourself better than you ever thought you could. I think these things hit us for a reason – we are forced to learn patience [U]with ourselves[/U].
So please, rest and be really kind to yourself.
AnonymousApril 10, 2007 at 5:25 pm
Chrissy is right, I think that the half mile walk since the attack was a HUGE feat, much too soon. 🙂 You have the right way of thinking though regarding patience, even though its soooo hard to practice. I think at the moment you should start looking at two or three month segments at a time. If you jot down quick sentances during the day of things you could do that day, what you were able to do that you havent been able to do since the GBS, or how the pain was etc, (or do a couple of sentances at the end of the day) if you go back after two or three months, you may see your progress. Sometimes that does help, and you may see some surprising things that you wouldnt have remembered or thought of. I think once you concentrate on the year ahead (in segments) and not your whole life, it may be easier to cope, and things most probably will look so much better after that year has gone. Now all I have to do Becca, is take my own advice 😉 . Keep posting!
AnonymousApril 10, 2007 at 5:34 pm
Recovery, especially in the beginning can really be frustrating. Take it easy and and don’t over do things. Your stamina will increase gradually. I had a really hard time with a clutch for quite awhile post-GBS, an automatic would be a great idea, one less thing to worry about. Take care of yourself and come back often 🙂
AnonymousApril 11, 2007 at 1:21 am
Hi Becca, thanks for sharing your story. I’m 35 so I know what you mean about feeling out of place with your body. I’m in my 7th month of recovery at home after a 5mth hospital stay. If it’s any consolation, I was told to give myself approx 18mths to 2 yrs for recovery time and at that point they have a better picture of what residual damage you may be left with, if any. You are very much in the early stages of your rehab/recovery phase so just be positive and give yourself both mentally and physically the time to heal and try not to worry too much about tomorrow just worry about today. I find setting realistic achievable goals for yourself really motivating and when you accomplish the goal it feels fantastic. GBS is work in progress and you will look back on each week, month etc and amaze yourself at how far you’ve come …. so don’t despair with hard work and determination you will get there in the end 🙂
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