new home-you will join me
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September 28, 2010 at 9:15 am
Hello All
I have always liked dusty old houses and this set of forgotten threads will make a lovely home. Nobody comes here because the success story folks are enjoying life, those in pain are hurting and the doomsayers are reveling in their misery.
I will warn you in advance that if you are on this thread to spread any s*** about failed recovery or [U]YOUR[/U] conspiracy theories that are mere opportunities to say that you know more than the medical community then I [U]will[/U] tell you to f*** off. Sorry for the extreme language, but I tried this before and the negs just couldn’t resist hanging their unfounded assumptions on other threads dedicated to hope.
This goes out to the acute-phase patient and their families. Resist the temptation to believe you wont heal. There are mostly success stories out there and you should not assume you will not be one. You or a loved one are perhaps experiencing the most frightening moment of your lives, be strong and know it will pass. For those who have ‘locked-in’ there is hope. I have befriended three former patients, all whose recovery took years to complete. They are back at their lives and all believe they have become stronger mentally than before. Ivan who came to my house was in ICU for six weeks, and rehab for seven months. It took 18 months before he could return to work where he must do heavy-lifting all day. He strode into my home and could have lifted me over his head!
Seek out the positive stories and your recovery will be much easier. Avoid any notion (and people who will ache to tell you) that you will not recover (this could be a long journey). Negativity is too big a mental obstacle. Know that most GBS patients 70% return to their lives.
Welcome to the den of hope. Anybody with a negative story, please re-read this post. As for the rest, I will see you on the running track!
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September 29, 2010 at 2:41 pm
Hey NGG,
I check in here every once in a while. Like every six months or so. Wendy and I are really active. We just got back from a cruise in Alaska. Best trip we’ve probably ever been on. Zip lines, kayaking, float planes, even hiking on glaciers! Great weather too. Who would have thought you would wear tank tops in Alaska?! We also belong to a great car club in the Bay Area so we do lots of runs up in the wine country. Last week I was in a charity golf tournament. God, I suck, but I really enjoy playing. This Saturday our car club is doing a pistol shooting tournament so I have been spraying the countryside with .45 ACP the last couple of weeks to make sure I don’t embarass myself.
So as far as I’m concerned I’m back to 100%. I don’t sweat the little stuff any more. In fact, since I can’t feel my toes really well works out great in the winter because they don’t get cold any more! One thing that does get a little irritating once in a while is my breathing. They were having a hard time intubating me for some reason and actually asked Wendy’s permission to give me a tracheotomy, but they finally got the tube in so I dodged that bullet. In the meantime though my left lung collapsed. That was weird when I started breathing deep again. I could feel/hear the tissues re-expanding. Kind of like those old Chinese umbrellas with that see through stuff? Kind of crackly. It got kind of fun to see if I could make it do it some more. Anyway, today I can get a little more short of breath than I used to.
One thing that helped me a LOT when I was going through my whole thing was listening to power music. From your forum handle I’m sure you know what I mean. ZZ Top’s La Grange, War’s Low Rider, Robert Palmer’s Simply Irresistable. Stuff like that. Eyes dilate, pores contract, energy goes way up. It’s always worked that way for me. I can remember my rugby coach 20 years ago or so (back in the Walkman days, hah!). He’d say, “Ah sh__! Mac’s listening to that music again. Put him in and get him the ball…. and tell the other guys to get out of the way!” Even when I was all the way down — eyes taped shut, on ventilation and couldn’t move a muscle, Wendy would put my Nano buds in and crank it. She said I would even swell up while she watched!
Cheers!
Johnny Mac -
September 29, 2010 at 6:48 pm
Hello Johnny, great to hear from you.
Yes, I too use music to get through GBS. I love the tracks you listed, especially ZZ Top (I love their early stuff, Just Got Paid, Heard It On the X, Tush-awesome!). I clutched my i-pod the way spiritual folks clutch their bibles. I started a thread on tunes, it seems to have lost interest among folks here, that’s cool.
I so love to read your posts. They are brimming with optimism. I have read some of your more serious posts as well, where you are writing to people who are acute-phase. Your sensitivity and optimistic advice is a tonic. Keep it up and rrrrrrrrrrrrrrock on!
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November 3, 2010 at 9:44 am
life is livable with gbs damage, enjoy family, friends, music, good food, wine, etc. Find something to enjoy today, I hope you do!
Best!
-Chris -
November 3, 2010 at 11:25 am
Hey Chris glad to see you back. How you doing? I took a healing day off work today but overall all is well with me.
Harryb -
November 3, 2010 at 7:18 pm
‘all is well’ and you got a personal day out of it…that’s sweet Harry! I’m so happy that you have tamed this demon, you’re gonna kick it out forever! keep going!
feeling good today!..I rank by days, not actual feelings…….keeping the head straight with positive projects…..trying to enjoy extended sick leave…….playing more these days, messing around with musical toys at home, even created a unique new sound with old and new technology, probably sounds like noise to everybody else, but gbs can hush your critics 🙂
good to hear from you Harry! rock on!:cool:
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