AnonymousApril 9, 2007 at 7:38 pm
My father-in-law (Doug) came down with GBS in Jan 2006. He had a bad case, had to go on a ventilator and experienced numerous complications. He was in a hospital or rehabilitation facility from Jan until May. Since he has been home, he has recovered from a very bad bed sore, had trachea repair and recovered a lot of his strength. He walks (though he is fearful of falling). However, he suffers from depression and anxiety. A psychiatrist diagnosed him as having post traumatic stress syndrome. He takes a combination of three drugs for anxiety and depression. Some days he sleeps a lot. Others he is very restless and wants his wife to drive him places when she comes home from work. She is also depressed and on two medications. He is the kind of person who keeps things to himself–he doesn’t want to talk about his feelings so I haven’t heard much from him directly, but his wife says the anxious feelings are physical more than mental. He rocks or shakes a leg almost constantly. He also has numbness in his feet. I wonder if he has physical sensations that make him restless and if there might be a medication to help with them. I also wonder if his depression is partly due to the one-year anniversary. Doctors suggested repeatedly that his recovery would be pretty much complete within a year. I wonder if Doug now believes he will never feel better or be ever to do more than he does right now. Do any of you have suggestions as to how we can help Doug?
AnonymousApril 9, 2007 at 9:21 pm
This is such a difficult one to tackle. GBS / CIDP and so many other illness change our lives forever, it comes out of the blue, and we can never in our wildest dreams imagine that our lives would have taken this turn. I have to say that just thinking back to the way we were, and what we are now, what we could do as opposed to what we cant now do, is very hard for our minds to comprehend. This is where the depression often comes in. Some days we do feel fine, even though we may have certain limitations and funny feelings in our body and limbs, but there are days when there is no possible way that we can get out of bed. The fatigue and possibly pain is absolutely debilitating. I used to sleep and sleep (still do), but feel guilty becuase I couldnt clean the house, I used to think that my family thought I was lazy and not wanting to clean, that in turn changed to anger and it would boil inside of me and finally explode.
It is important to remember that the numbness is probably because his nerves were damaged, and may be on the mend. Unfortunately this may be something that plagues him for a long time. However, recovery can take years and years, so I wouldnt give up or worry about what was said.
I have started on some medication that has helped me a little. I have explained how some of us feel, however I’m not quite sure how Doug feels and if he is going through the same thought process. the days he sleeps, is it because of terrible fatigue and possibly weakness, or do you think its because of depression? I think that he possibly [B]needs to know that he is still a vital person, someone who is needed and not just needy[/B]. [B]Possibly he needs to feel that he makes some contribution[/B], but it has to be during those times he is able to contribute, otherwise it could make him feel possibly ‘less of a man’. I know that this would be hard to judge and I think it would be a learning process. This may be a silly example, but on one of those days that he wants his wife to drive him somewhere, maybe she could say something like …. “Oh honey, if I stop at the store, could you please just go and get me a gallon of milk, I feel so tired and it would help me a great deal”. I know that it sounds silly, and maybe she does it already, but feeling needed is so important, and feeling hopeless and as if you are contributing nothing destroys one.
AnonymousApril 10, 2007 at 11:44 am
Thanks for your thoughtful reply, Ali. Doug has always been the decision maker, the breadwinner, and the one who controlled the situation around him. So what you say makes a lot of sense. I’ve told him and his wife about the forum. Maybe it would help him to see that he isn’t alone in this experience. He doesn’t share his feelings easily, but he might be more comfortable in this venue. I also see that part of life after GBS is developing ways to cope effectively with limitations and slow progress.
AnonymousApril 10, 2007 at 11:57 am
I can honestly say that this forum has been such a help to me. I really am not someone who enjoys the internet or computer, but this forum is very close to my heart. Sometimes it is easier to open up and speak to people who dont really know you and cant see you. Also, it may be worth his while just to go back into past posts and just read, he doesnt even need to join, unless he has a question.
I think often a major problem is the fact that during or after recovery, suffering from residuals, one doesnt look sick, but you feel horrible. People say things like, “… you look well, how are you feeling”, or just generally the “…..I’m fine, how are you?”. Honestly, do they really want hear about your pain, weakness and horrible fatigue? I know they are trying to be thoughtful, its just hard, so the usual answer is ” Oh, Im doing OK thanks”.
I am so glad you found the forum, I really do hope it helps in someway. I hope you will be back to post if you have anymore questions.
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