An online scribble of thoughts after experiencing Guillain-Barré Syndrome.
Four Years Later...
And here I am, for an update, four years away from diagnosis.
My body has healed quite well indeed, but that is not to say that signs of what it has been through, are completely gone. It is only very recently, that my hand tremors have been subsiding... slowly. Well, sometimes they are better, at other times they are worse. I have noticed a relationship between my hand tremors, state of mind, and food intake. Specifically, ready-to-go coffee makes my tremor worse, whilst home-brew Costa Rica coffee bean coffee brew does not. How strange is that? Stress or heightened emotional state also makes it worse.
It is also only recently that the cramps (especially in my legs and fingers) have become much less frequent. Cramp days are often followed by days in which I feel incredibly strong - again, this is quite a strange occurrence in my opinion that seems to have some sort of time-based pattern.
But looking at it all, I am nit-picking I guess - as I feel very fine, strong and still with a changed insight about life. I cannot complain at all, ultimately, despite the occasional nuisance and minor limitations when handling really tiny things. (especially thin light things such as small bolts or SMD components). Nothing that has really stopped me - I have done much more in life since GBS, than before it became part of my life and part of those who experienced it second-hand through me by being those close to me. I salute you all. Don't let your bucket-list spill full with things not yet done. ;)
Alas, today, 20th November 2015, is my fourth (science-extended) birthday.
This video is for you, my thousands of readers. I never knew I would reach so many though this blog, all around the world. Thank you all for your valued feedback, wishes and stories. Live strong my friends. Live NOW!
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hi,Trevor...to be honest,I have been expecting your update,,I'm glad u're much better by now,,greetings from Turkey...♥ I have no idea why this shit cought me:( after 5 months suffering really serious bad pain,now I can able to walk without any assistance(slowly)/my numbness is over now on my legs...The first 3 months were really a nightmare,almost completely paralyzed,not able to use and control my legs and arms, my deep tendon reflexes are lost and I was seriously wanted to die because the pain was awful but now I'm much more better,god'S sake...I have lost some of my muscles from the bottoms of my feet,...Actually these areas are the only places that I have lost muscles after all those months without movements( I was in my bed for the most of the day,whenever I move even slightly,the pain was horrible)...no muscle atrophy ecxept this.. I have never needed ventilation fortunately,,, I try to stay positive and make myself believe that I wil not have any sequelae after all...my boyfriend Hakan is my angel,in deed...he always encourages me that this nightmare will end one day... sooner or after:( please wish me luck,fingers crossed:(
ReplyDeleteHang in there my friend! Fight it back. Yes, the pain is something one can never forget, but in the long run, the fight will make you stronger if you remain in the right frame of mind. Best of luck to you! Glad to know you have support near you!
Deletethank you so much, mate...I've been trying really hard to survive..I'm 5,5 mos out now and things are getting better at last...my main problem is my legs but they are getting stronger and stronger as the time passes by but need much more time to make a full recovery...As I understood from your blog,your main problem is your hands and still having tremors,unfortunately even after 4 years:(...wanna ask you a few questions,mate if u dont mind...what about your legs? have they recovered fully or still having some mild problems in walking or running? can you able to run as the old days prior to GBS? etc....btw,I sometimes experience cramps and twitching in my legs especially whenever ı over do...thank you so much for this blog and support,mate...it really helped..loves & hugs♥
ReplyDeleteThank you for leaving a comment here friend. Keep at it, as the long journey is not easy, albeit everyone with differences in improvements. Yes, you understand correctly, however, even after four years I feel that I am still improving, although at an extremely slow rate now. I walk perfectly and can even run for the past year or so like before my GBS adventure.
DeleteStanding up in the same location however, does sometimes give me serious heel pain similar to that described by those who suffer from plantar fasciitis. I do prefer tighter, slightly narrower shoes now with a padded heel or base. You can keep in touch with me via email if you wish (I'm @gmail - or send me your email here and I'll say hi back via email - your email address won't be published don't worry) - Keep strong, inside and out. Thumbs up friend.
Hi Trevor,
ReplyDeleteI have just finished reading this chapter of your life. In such times, one can only endure. I am glad that not only you endured but managed to find the inner strength to share it with us. Thanks.
In my Thoughts
Ber2
Hello Trevor :)
ReplyDeleteI am a medical student who came here accidentally, but wit your wonderful inner strength your blog captivated me. You are a strong human being! Thank you for sharing your experience. I won't take my health for granted anymore. This made me view life very differently.
Regardless of your beliefs, I pray for the happiness and well-being of you and your loved ones. I hope you keep doing great! I'd love to hear a new update from you sometime.
Rand, from Syria.
Hi Trevor,
ReplyDeleteAppreciate your blog and your struggle
In 2007 i suffered with GBS and quickly improved my health conditions and now here i am in 2016 from past few days am feeling little weird(i feel that when get down stairs i feel my legs little fingers are moving away or numbel or i dnt sense it and slowly my left hand side little finger is behaving same its just once a while for few minutes) am all healthy can jump or walk do things on my own. But its just that am kind of worried again i dont have to go through that bad nightmare. Could you please let me know (if you have any info or help) is any chances will it affect again or how to avoid it.
Looking forward to hear from you soon
Thank You
Zean
Hi Trevor,
ReplyDeleteThank you for your blogs on your life with GBS. I'm 6 weeks into my struggle with GBS, and I must say my symptoms and experience thus far have almost mirrored yours exactly. From all the reads I've done on GBS yours have been by far the most valueble and motivating to me, and for that I thank you from the bottom of my heart. Your story and positivity are an inspiration. All the best!
Regards
Will
You are most welcome Will, keep at it my friend. The journey may be long but don't give up. Best of luck and thank you for your kind words.
DeleteHi Trevor, I came across your post after googling recovery after a long hospital stay. I don't have GBS but another auto immune condition. It is comforting to know that you also had to relearn to do things- I can relate to the climbing stairs, the falling onto the toilet seat rather than controlling the descent etc...Is it ok if I contact you to discuss further. My motivation is waning...
ReplyDeleteNo problem Stephanie. Leave me some type of contact details (email or fb) however in a comment here (it won't be published) so I can send you mine and we can then communicate in that way if it suits you. Thank you for your kind comments. Hang in there.
DeleteThank you so much, Trevor. My GBS hospitalization began 4/20/16. The world is not spinning so erratically now but other symptoms persist or are starting. Searching the majority of resources on the web hasn't helped, but your blog is marvelous.
ReplyDeletePart of my experience seems like a carousel - from one MD specialist to testing to another MD and around and around. Hearing your experience helps me know what symptoms to handle with grace and keep the probing and medicating at bay for them. As you know, testing can be traumatic and some medications take us away from the life force. Some are very necessary, knowing the difference is tricky until we share among us. elaineh