Support and Motivation
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December 17, 2016 at 12:37 pm
I started an instagram page to spread more awareness on GBS/CIDP. People can send in their pictures and stories to be shared. It’ll also have some advice for loved ones who are also along for the ride. Let’s spread awareness and support in any way we can! Instagram: cidpgbssurvivors or you can email cidp.gbssurvivors@gmail.com Spreading positivity and light. Have a great day!
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December 21, 2016 at 1:58 am
Thank you very much as you started an instagram page to spread more awareness on GBS/CIDP. I hope People might be interested in sending in their pictures and stories to be shared. Design and HTML
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January 6, 2017 at 5:02 am
Hi, I’m 23 and I got GBS in June I’m still recovering but I was completely paralyzed for a few months, is there anything that really helps you cope with it? I’m still having a rough time trying to comprehend that I am not the same person I was a year ago (physically)
Ariel -
January 6, 2017 at 5:25 am
Hi Ariel,
What a beautiful name you have! I’m 28 (actually 29 now because today is my birthday) and I was diagnosed back in February of 2016. I had a pretty bad case, but I remained positive. I am very blessed to be surrounded by such supportive people in my life. I also found this site helpful as well as meeting people with the same affliction through FB pages and Instagram. I even met a couple of people in person who had GBS and are now fully functional. I know some days are harder than others, but focus on what you CAN do. You were once paralyzed and now you’re moving again. Your chances of a full recovery are very high due to your age. I’m still recovering and just starting to walk again with a walker. If you’d like to know more specifics of my case, you can go to Jamiegbs.blogspot.com. I focus on the positives and consider it a blessing that I’m alive. It’s a chance to relearn everything again from feeding yourself, brushing your hair and teeth, to walking again. I find that really interesting and find a new appreciation for it all. If you’d like to talk more privately, I’d be happy to give you my email address and phone number. Stay strong and positive. You WILL get back there, physically. When I look at myself, sometimes I become unhappy because of the weight loss and flabbiness from not using my muscles. I used to be really active and fit so this has been a huge adjustment for me. It just motivates me more to work hard once I’m more capable to get back to all of that. One day at a time. I started this book called ‘Mind Over Mood’ Second Edition by Dennis Greenberger and Christine Padesky that a friend had recommended and I’m finding it to be extremely helpful in dealing with all the emotions that come with GBS such as but not limited to depression, anxiety, sadness, and anger. It’s been such an insightful book of growth and being more self-aware thus far. – Jamie
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January 18, 2017 at 1:53 pm
Hi. So that’s where I got the title/author of that book from! (My undiagnoseable ADD is worse since the onset of GBS.) At first I lost about 30#, then the doctors put me on allergy meds and an antidepressant for my lifelong insomnia…and I ballooned up to just shy of 200#. Some allergy meds knock me out and insomnia meds make gain weight. Bad combo just out of the hospital! I was “sleeping” almost 20 hours each day. After several weeks, I noticed my body wanting to move but my brain vetoing that. Doctors wouldn’t change the meds, so I changed them myself. I stopped gaining weight, but it has been very hard to exercise to lose it again. I, too, have trouble comprehending how I look. I’ve always been athletic, active, definitely not an overeater, so this change in weight and physical ability is frustrating.
I go back-and-forth between trying to get as much rest as I can when the fatigue is worst and staying as active as possible. I’ve been dealing with an unrelated issue for the last 13 months that has taken most of my physical and mental energy (cleaning up my Dad’s affairs after he died…and his 2nd wife’s death 3 years prior: they were borderline hoarders with a huge house).
Time to take the bull by the horns and rip them right off! Finding an appropriate job and getting as close as possible to my previous level of health…prioritizing 3 hours at a time. I’d say I “get mad” as motivation to exercise, but that isn’t quite accurate (anger wastes energy). I take a deep breath and get done what I can until I have to rest. Que sera, sera.
Thanks for reading… -
January 18, 2017 at 1:58 pm
Oops, that was supposed to be “motiv8″…
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