I dont have a good support network and thiz gbs experienc has taken more than a lot from me. Noome ever seems to understand. It and i dont want to give into it, just really down and i dont know how to talk to anyone about it.
Hello Timity,
I think most of us can relate to what you are saying. GBS is a physical and emotional traumatic experience, probably the worst experience of most of our lives. That's certainly true for me. It's easy for the lasting pain and other problems to weigh you down, and people can't "see" your painful feet and legs, or your physical exhaustion. Try to keep active. That really helps. Pretty much the only time I feel upbeat these days is when I'm outdoors cycling, which is the physical activity that I've taken to, post-GBS. You might want to talk to your doctor about it also. He/she may want to prescribe an anti-depressant to help you. And please, do not make the mistake of thinking that there is something wrong with anti-depressants, or that you're somehow "weak" for using that assist. I know many people who use them to great positive effect, and it helps their lives substantially. It also helps to talk to someone. If you have a friend whose ear you can bend occasionally, that will probably help. We're here to listen also, here on the forum. And we have all had a similar experience, some better, some worse.
Good luck and best wishes.
LanceB
I like what Lance B. wrote below. I would encourage you to pray about it - God is with us at all times ... good and bad. Blessings to you - it does get better - it just takes time. Nebretta
I understand everything that you are going through with this GBS. I also have quite a few peaks and valleys in dealing with the symptoms. I was independent before this happened and now I can no longer work or support myself. Thank God that I have a wonderful husband but it does not negate the fact that I am now dependent on him. I am working hard to regain my independence through exercise etc. I just think of two things…never give up and this to shall pass. It is normal to feel a little down but please just do not stay there.
Thank you, my experience is still pretty different though, not discounting. anybody else. I just know, its a pretty insane story, not really sure how im alive.
Hi Timity - I would be interested in your story - and why you feel "not really sure how I'm alive"
Nebretta
It is rough Timity and fin dig that light at the end of the tunnel is hard work, big hugs. Losing independence knocks the stuffing right out of you, leading to lots of anger. I find it helpful to write these feelings down, I use my ipad or the computer because I can one finger type as I still haven’t regained writing skills with the numbness. So much of feeling down is really anger turned inwards. It is okay to rant and rave and release those feelings, it will leave you feeling drained but more still peace and able to deal with things minute by minute, one steps a tie. I often wish we could take our heads off every night, if we weren’t thinking this way we wouldn’t be feeling this way. Hang in there, life will come back, not maybe as you once knew it but better than that because you will be stronger, you will no longer put up with things that once got you down.
Be kind to yourself, you are so worth it.
Ps sorry about the typos,one finger stuff
Its ok, ii just know i went ghrough something different.
I also like everything that LanceB wrote. I also took comfort from this http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
As has many others here. Just live each day that comes, and let tomorrow take care of itself.
Keep talking to us. We know your pain. You can make it through, with minimal personal support, for you WILL improve. Yes, it is so very difficult! I am so sorry you must endure this. Yes, GBS is sort of a game of endurance. Always know that we with GBS are so very fortunate as compared to those with conditions that limited to healing.
Exercise greatly helps. I cycle, also. The bicycling holds deep meaning and great rewards (including fresh air, sunshine, heart/lung/muscle/mind exercise, and freedom!
Distraction for pain. Occupying your body and thoughts. Giving to others, even if only in simple words, gives back to you. Sending thoughts of strength and comfort to you.
I was hit with GBS at the age of 72 - I am now 75 - still kicking. My wife told me the daughter of a friend of hers was just diagnosed -- she is 9 years old. Let us all pray for this little girl. I can handle the numb feet and hands - I can handle walking with a cane - I can handle the occasional depression -- but I am nearing the end of my journey. This little girl is just beginning her life - I pray for her complete recovery
feel for you guys but my experience was different