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Living with Polyneuropathy CIDP, GBS, & CMT

Feeling weempy


#21

Yeah, I understand all of what you said. I have a good friend who has MS and is no longer able to stand, walk, do her favorite hobbyof jewelry-making due to not being able to use her hands, etc. When I think of her I feel fortunate that I am able to do all of those things but when I am in the throes of acute pain in my feet (not all of the time, only when it really flares up) I lose track of her and suffer inside myself. So it's all relative and each of us suffers in his/hers own way. Thanks Dave, for your insight, I treasure it! Carole

Dave Noel S said:

I think it's clear that everyone who survives GBS experiences very different symptoms. Those sympoms direct our reactions. Most of us are affected by fear. Now that I'm facing cancer-and my wife divorced me too, a common symptom- I compare chemo therapy with a flu shot and my fear tends to choose the road less taken.
You need to do what's right for you. MDolich chooses to avoid flu shots and that brings him peace. After two rounds of flu, brochitus and now cancer, I feel safer with immunizations. Don't ask about the end result: ask us to share experiences. They're all different. And I speak of what we endure starting 24 months AFTER completing treatment. None of us are wrong. Neither are you. But do you rise from bed every day? Can you microwave food on your own? Can you bathe yourself? Are you able to wash? Change your sheets? Keep track of your meds? Remember nouns? Can you read for more than 15 minutes? Have you the energy to relieve yourself in a urinal? When a cat sits on your lap can you tolerate the pain? Have you the energt to get the mail? Bring in groceries? Respond to mail?
We're all different and there is no wrong way to cope. Yes, I get immunized, particularly given what chemo does to the immune system. "Weempy" is a brilliany word and credit to you for coinage. Most of us weep alone for many reasons. We already know how GBS harmed and scared our children, friends, family. Inoculations are part of that. Guilt. It's there.So we don't weep in front of them though at times we want to-we NEED to.
Cancer could be a gift. Stay with me. A get out of jail free card to put an end to the dateless, lonely, painful lives we have. But my mother's still alive. I have two 20-something daughters, a 3 year old granddaughter and though my daughters are painfully leaving it up to mr, my mother is insistent that it's my duty to fight the cancer. She's 80 and wise. Guilt. And fear.And chemo-therapy.
So tomorrow I'll drive 130 miles round trip and sit in a naugahyde chair with three others for four hours, court TV above&, books, and conversations. Pot brownies from Cliff's wife. A flu shot? Maybe it's easier for me. Maybe I've had good luck. There.
In 1980 there was a 26% increase in GBS. The CDC and other agencies did research to find a similarity and they stopped at discovering they'd all had a flu shot. the FDA wasn't conducting research but was, by law, given these results. If one is testing a new medication and has 1,000 subjects and even ONE subject reports a headache, by law it must be listed as a potential side effect. But if there are two areas of medicine that requires more understanding it is the brain and the nervous system. Until 2007, it was believed that we used only 10% of our brains. Does it make more sense that we've no idea what the other 90% does? Think: the world was once flat. The universe revolves around the earth. Preserve bodies in Pyramids for their return. Blood carries evil spirits. People with behavioral dissorders were withes; then possessed by demons. Are you prepared to say we understand it all? That GBS-the cause of which is STILL unknown-is to be left in the hands of only doctors and social media support groups? No. Trust yourself.
I had hoped that this would be a forum for sharing experiences; for finding camaraderie; to weep openly. Instead, because of our individual isolation this is more "Should I", "Have you?", and "Am I?" A much needed forum, but patients from 1980 are here with patients still overcoming paralysis in a high tech rehab.
Read all of us. Read Joseph Heller, FDR. talk to neurologists, immunologists, infectious disease specialists, psychologists-8everyone. Educate yourself and then trust your own judgement first. No one knows your body as you do.
My first flu shot scared thre hell out of me, but I looked at the recurrence of GBS, the triggers in CIDP and with terror, signed 14 pages of release forms. I was more fatigued for a few days after inoculation. Not since. Am I lucky? No. Because relapse of GBS is far more rare than GBS. I'
Was a musician and composer but now I use left brain statistics and common sense and what is right for me.
How many people who've told you they will never have a flu shot had even ONE thereby being able to give you real feedback as to what happened? Discount them because within your sample group they do not meet the standards by which you need to measure.
Take control of your body, your health care, your LIFE.
If I can do more: dnseaman62@gmail
Dave

#22

I have an awesome husband that that has stuck by me and threw this crazy stuff called G.B.S. point is if it were not for all of you I think I would be still wondering why I am not 100% now. I was told I would be. we all know the pains and hardships this syndrome has to hand us. no matter mild or sever it is not an easy journey. stay strong all and thank from bottom of my heart. I have an appointment with a new neuro, hope all goes well


#23


Kel,l good luck with the new neuro, keep us posted. I too have a great husband who tries to understand what I am going through so for me it does help. Luck to you! Carole
kel said:

I have an awesome husband that that has stuck by me and threw this crazy stuff called G.B.S. point is if it were not for all of you I think I would be still wondering why I am not 100% now. I was told I would be. we all know the pains and hardships this syndrome has to hand us. no matter mild or sever it is not an easy journey. stay strong all and thank from bottom of my heart. I have an appointment with a new neuro, hope all goes well


#24

Hi Moo....just wanted to say i feel for you...and i know first hand what it means to lose your quality of life, your independence, your health and then on top of it...someone you love and expected would be there for you! My partner left me to for a 'healthy' person once he realised there was no quick fix. Mind you, i don't usually have flu shots (don't trust them) and with a immune disorder and Ross River virus...not advised to have them as a live virus would have severe consequences. It was actually my partner at the time who convinced me to have one cos he had one every year and it never hurt him. Silly me, trusted in his judgement and the nurse told me it was NOT a LIVE virus the flu/swine flu injection so i went ahead. The next day i could not feel my toes...tingling, numbing. The 2nd day...my nerves and muscles and tendons felt like someone had lit a torch to them and i was in unspeakable agony. Cldn't even touch my skin for the pain. The 3rd day...that was it...the life i knew was over and I was completely paralysed from toe to shoulders...my legs and arms felt like lead and there was no connection from my brain to my limbs wen i tried to move them. I was moved to the basement downstairs and made comfortable while he found a new companion to look after him 'upstairs' in what used to be 'our' home...now became his and anothers whilst i layhelpless downstairs. So believe me when i say i know what it means to feel helpless, hopeless and frightened about how you will continue life like this...without someone dear to care for you. Many years have passed now and with alot of medication and infusions, i am out of the wheelchair (which i was in for 3-4yrs)...I no longer need carers and live independently altho every day is a struggle...some days better than others. I just want you to know that even tho it looks like there is no point going on or that the future looks hopeless...things will get better eventually! Maybe you will never recover fully as i have bn left permanently disabled in some parts of my body...which i have come to accept. You learn to accept what is and do the best with your life that you can...and hope and pray that someday...a new and better love will find you again and give you the kind of love and caring that you deserve! In the meantime, stay strong...stay positive and know that healing takes time...lots of time and devotion. God Bless



mdolich said:

hmmm............ I'm not sure she means "weepy" as in crying, I feel she misspelled "Wimpy" as in, she feels like she's being a wimp when it comes to this disease. But I could be wrong, LOL.

Moo said:

Hi I'm feeling very weepy at the moment. My husband has divorced me because I got gbs very severe, iv been left parralplegic and left in a wheel chair and wheelchair bound.iv got another chest infection. . I was left with a chest problem permanently. I have never felt so alone and helpless ever. Thank you for listening.


#25

Hi iv only just found this site again, I could,not use the iPad properly. I live in England would love to here from anyone with or had gbs


#26

hi Rosebud59 I couldn’t see any ones reply couldn’t use the iPad properly but would love to here from any had or got gbs


#27

Hi there, my name is Carole, I am 81 years young and I live in Colorado
Springs, Colorado. I was diagnosed with GBS in 2005 after receiving a flu
injection. I never had any respiratory problems but I am still having pain
in my feet, sometimes acute but mostly just bothersome.

I would love to communicate with you, I am, of course, retired and home
almost all of the time. I promise to answer right away as I am in my Email
at least twice a day.

  Take care        - C-

#28

Hi Carole I gbs 31st of October 2013 came out of hospital 2015, I got it very severe, I am wheelchair bound, I am 53, I knit and sew and read so I try to keep busy, I live in Merseyside, England. Il check my email in the morning would like to here more take care. X


#29

Carole,

Hi there! My name is Dayna and I saw your post. I live in Colorado also. Do you know of any GBS support groups that meet in the area? I cannot seem to find one. I was diagnosed with the less common acute motor axonal neuropathy form of GBS a year ago. I am doing well, of course not as well as I would like. I work from my wheelchair due to poor balance issues but I can walk with a walker well. Distances are difficult due to low stamina and my hips and back start to hurt. Mostly due to stiffening up because I am afraid to fall. I have the same issue you do, pain in my lower legs and feet. Not horrible, just enough to be bothersome. Have you found anything that has helped for that? Thank you so much!


#30

Dayna, so glad to hear from you! I rarely if ever hear from anyone who has
GBS.
I live in Colorado Springs, what city are you living in? I haven;t found a
support
group here in Colorado Springs. There was a woman who was supposed to head
a support group in Colorado Springs but she said that there was a definite
lack of interest so she just sort of drifted away from her duties. I had
heard that there was a support group in Denver but I’m not sure.

Sounds as if you definitely have it worse than I do. I walk with a cane
because if I don’t I get “teetery” and have, in fact, fallen a few times.
The pain in my feet is mostly, as you said, bothersome but there are times
that it is acute. Do you live alone? What kind of work do you do? Do you
drive still?

Definitely more later, again, so good to hear from you.

         Carole

#31

Hi moo I live in a small town in Kansas. I got g.b.s. after a tick bit.
I also live with chronic Lyme disease. I got g.b.s in spring of 2013,
never went to the lungs and was not completely paralyzed, thank god. I
still deal with some side effects burning, tingling, and numbness of feet,
mostly ands sometimes hands, fatigue sometimes I go to sleep for 24 hrs.
or more. since getting so lucky to have been choosen for
this lovely syndrome my life has changed in many ways. I try to stay
upbeat, heres the but, but some days are harder then others.
stay positive and keep on moving , a moving body is a happy body I wish
you well