In hospital Jennie was regulalry reviewed by counsellors as two of the side effects of GBS are strong emotional reactions and fatigue. Whilst the later is not too much of a problem, the euphoria of trying to return to a more nornal life is proving difficult with Jennie very emotional when she meets friends she has not met for some time, or visiting previously familiar places. This is normal with the rehab hospital providing support if required. But a trip to grandchildren in London brings the realistion that she has not made that journey for eight months.
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December 13, 2010 at 7:28 am
Lynn Waugh
Hello, my name is Lynn and I am a GBS survivor. I had GBS when I was 13 years old for a period of one year. Recovery was tough. I wasn’t expected to live. I am now 52 years old. I understand Jennie’s feelings well. GBS being rather rare, it is is greatly misunderstood which only enhances the patients “real” symptoms. I read forums myself to hopefully provide support to others and to gain a better understanding of what others have gone through and any residual lasting affects GBS has caused them.
Back to age 13; I thought I had the best friends in the world and at once (at far too young of an age), I realized everyone who I thought was my friend were too busy with their own lives to slow down and take time for mine. Compound that with being paralyzed, fatigued and giving up freedoms you know exist for a life of depending on others and you have an emotional wreck on your hands. We all strive for independence and GBS suddenly robs you and in its place you have others who are “so sorry” for you, avoid you like the plague or just stare at you. Suddenly, overnight, you are “different”, yet still the same person. Yes, it is a very sad affliction but who wants these kinds of uninvited reactions? The shock of such a life-changing event (coping with oneself and the realization that the whole world isn’t on your side like you once thought) can spiral even the most grounded person out of control. Jennie I believe knows no one who is feeling what she is feeling so perhaps it would be helpful to connect her with someone who has had a similar experience. Let me know if I can help in any way. I’m sure you are curious whether or not I still have any residual affects. I made a remarkable recovery, meaning I can walk normally without a gait but I do have a few issues as a result. Post GBS caused: Increased fatigue (I am able to push through it so it is not debilitating), difficultly standing “still” for periods longer than 30 minutes (legs/feet ache like needles and pins), and intermittent numbness in my toes. My feet swell when standing too long.
February 10, 2011 at 6:38 pm
Debora Kruise
Sir, a doctor told me my friend has the most severe case of Guillain-Barre Syndrome he has ever seen in his 15 years of practice. My friend has turned the corner, meaning he can now move his head, eyebrows, eyes, jaw and one shoulder. He is on a respirator. What is the best advice you can give the caregiver. What helped Jennie the best overall? Thank you for this site. I’ll be reading more later, but most of my time is spent in the hospital for now. Thank you.
April 2, 2011 at 4:34 am
designsbysachs
I sure hope Jennie and any other Survivors that see this will stop by my blog and complete the interview I have posted and email it back to me. http://designsbysachs.wordpress.com/