Thank goodness I found this group! After reading alot of stories on here, I feel lucky. I was hospitalized vut never needed a ventilator. I am 2 weeks into recovery, but not much emotional support. My family and friends do t seem to understand what I am going thru. What are some of the ways you cope when you are alone in this?
It was tough! I had great support at home but terrible medical support at first. It was hard for my family to understand why I felt so bad though. This site helped tremendously. I loved the feedback I could get and continue to receive. The site is there any time of day or night when you are unsure what's happening and people are so willing to help. There are those who are newly experiencing GBS and those further in recovery. I have learned so much from everyone but most of all learned that I was not alone in this. Hang in there, you'll get better!
I recommend getting into some sort of meditation practice. It'll help with the stress, but also assist with detachment from your body that one needs in a time like this, while also facilitating self-love.
It is really hard for people to comprehend what we are experiencing. They just don’t get it. What helped me was prayer, and keeping my mind in line with the bigger picture. It’s important to keep your mind conditioned to only entertain the thoughts that will drive you toward your healing. Not the thoughts that will cause depression, self-pity etc. only entertain that which will bring you peace. Music, a good book or whatever u can find to take u to another place so u can find an escape. I’m praying for your speedy and steady recovery! Be Blessed! And please know that we understand!!! We get you!
Thank you so much for your kind words of advice! :) I am out of the self pity mode, thank GOD!!!! I was afraid to get back to doing the things I once enjoyed fearing I would flare up or collapse again. I tried to go to the gym, but seeing the people around that were much older than me, and then theres me, walking with a cane was so embarrassing! I used to love going to the gym :( I just sat in the sauna and cried. But now, Im feeling better. I am ready to try the gym again! Not going to go Beast Mode or anything lol but the excitement of just getting in there brings me happiness again! I am finished feeling pity, and missing out on the things I love doing the most. I almost feel like I am being me again!! I am truly blessed :) Thank you again, for everything! This group helped me alot....couldn't do it with out this support! :)
Good luck with your gym venture, Kris! Take it slow and don't get discouraged. You might notice little setbacks after, so don't overdo it. It's a slow build but it's worth stepping back into your old shoes and feeling like yourself again even if it's not your old self. Be kind to yourself:)
You will get better! It’s a long slow process, but the harder you work at recovery, the faster it will happen. The cane is only temporary, I was snow skiing again 9 months after contracting GBS. If I can offer any encouragement or advice, please drop me a line.
Keep pushin’ on!
I think emotional support is the hardest part of gbs. People have been kind yet they don’t understand. I was in the hospital three weeks and cried every day. Frustration was hard for me. I went from walking everyday to not able to move. It does get better. Hang in there. I am 1 1/2 years into this and still not walking. I credit my improvement to continuing my exercising, my church family, and my walk with Jesus.
Hi, I got GBS from Metformin, which is a treatment for diabetes. My family was really great supporting me and caring, but the doctors were very difficult, because they wouldn´t believe me and insisted that I went on taking Metformin. In the end I just refused to take more than the minimum, and back home my primary health doc finally changed the treatment so from the day I didn´t take Metformin anymore I got better. After three weeks I was able to walk without a cane and since then I got always better. Now the healing process has slowed down a lot, and six month after changing the medicament my feet are still numb.I find that physical exercise helps a lot, and I go walking, bought a hometrainer and started doing Tai Chi again, which is very helpful for my balance. I refused a Flu shot and here I am learning that I was right;-) I don´t feel 100% well, I am much slower, more tired and sometimes also depressed, but I try to accept my condition. Sure it is difficult for the familiy and friends to understand what is happening to you! I would say, we have to be patient and cooperate with ourselves.
I do have a very strong support system, but even though people get that constant fatigue is my "new normal", that doesn't always help me cope. It has almost been a year for me and what I have found it that I need to stay busy - not the "old me" busy of using my (what used to be well-functioning) brain 8 hours a day and then coming home and doing whatever else needed to be done - I'm afraid those days are long gone. Instead, I have found that hobbies are a very good therapy for me. I can't read so much anymore, but I do like to do puzzles (though I cannot work on them for long periods of time), crafts, fairy gardens (and soon outside gardens, which I am really looking forward to), painting, even organizing my house - mindless work that keeps me busy and gives me something positive to look at when I'm done. That has really helped my spirit, especially during these last several months where I really anticipated that I would be doing better than I actually am. And don't get me wrong, I am happy to be where I am - which is a long way from where I was when the lightening struck.