if you are thinking about it, don’t give up yet

November 21, 2010 at 10:28 am

hello…..hoping you all are having a good day

I went to a local GBS/CIDP meeting last weekend…..not a great turnout, but a few folks came forward…..heard some of the same grumbling heard here on this site, railing against docs and neuros and their inability to give straight answers…..I stopped looking for them from docs a while back and just take their sick notes or prescriptions and move on…my neuro has become little more than the measurer of my recovery, which I have a better track on anyway….

it was sad as usual to hear stories from cidp patients, my heart goes out to them, I hope they adopt attitudes like Alice here who fights on or Pam H.who loves life despite the limitations imposed by cidp….

despite this, it was great to see friend Ivan and some new people who feel they have [U]fully[/U] recovered from GBS hell and are enjoying life….made me forget my residuals and reminded me of the importance of enjoying life despite pain or fear of the future

have I recovered yet? lotsa pain remains and until I can play like the old days or sing a full song (I’ve never sang like Robert Plant, but he never had GBS) I have to personally say no, hands and trunk still have disability, fatigue sets in quickly especially when singing (maca has been good for boosting stamina nonetheless), still remain on long-term disability….despite this I have never been closer to my wife and kids, better than pre-GBS days? absolutely!

am I still recovering? slooooowly but I would say surely…..will I ever recover fully? generally not an issue at present, other current issues use up my time, distraction remains the best medicine…..no longer concerned about my own state as I start as a liaison/counsellor for new GBS patients…..

hope remains strong, though I have given up many times, I am glad there are many reasons to remain hopeful to keep my head straight…still very glad for the ‘myth’ of full recovery during the acute phase, this kept me somewhat focused during the ICU ordeal…..I’m happy to have personally seen that the myth [U]can[/U] be real!

good day to all