YIKES, How many times in a day can you explain what GBS is?

    • Anonymous
      February 8, 2011 at 10:32 pm

      I went back to work this week for the first time in 18 months. Two hours a day only two days a week, could hardly be called work.

      My condensed story: went to emergency with a mini-stroke, they found a brain tumour (bonus!), took the brain tumour that week, the next week I paid a return visit to the same ER with some impressive projectile vomiting, then it went downhill from there. Total paralysis, on a respirator, three weeks in ICU, but walked out of the hospital under my own steam 67 days later. Now I only have damage in both feet, my kids have dubbed the “Bunny slipper syndrome”… fuzzy feet.

      Getting back to this post, I thought I would get off my butt… which has magically expanded in the last 18 months and go back to work. I am a cashier at a local grocery store, the one with the big red S, I have worked there for a number of years and live in the neighbourhood, so I know a lot of people there. After the first few “Where have you beens?” and explaining GBS, which we know they will forget what it is as soon as they leave the store, I resorted to saying I was ill but am much better now, thank you.
      I thought my feet would explode after the first shift.
      I read a lot about fatigue, thrilled that it never bothered me too much before…’CAUSE I WASNT DOING ANYTHING. Now I have to nap after the shift.
      They won’t let me wear my flip-flops at work, I have bought shares in Adiddas, I have bought so many pairs of the wonderfully soft slip ons. So it has been a chore wearing sneakers.
      I had forgotten how comfortable polyester is to wear. (NOT) Archaeologists in a thousand years are going to dig up those old red and while uniforms which will be intact, and think we were some bizarre cult. They may be the only thing that could shield man from nuclear fallout.
      I forgot to get the doctor to put on the return to work medical form that I should have coffee at my check stand.
      At least I am not going back to the bakery where I can easily eat my weight in chocolate cookies.
      It took about 12 minutes for the novelty of going back to work to wear off. I will be working on a project late this summer, so I thought it might be a good idea to get used to getting off the couch. Fortunately for me I won’t have to wear sneakers or polyester, so I might be able to make a go of that project.
      I was catching up, reading posts I missed. Maybe we should start a drug co-op. Those of us that have leftovers can share with the others, keeps their costs down. Or we could have like a swap meet. We could have coffee, try each other’s meds, could be a good time had by all. Dibs on the dude using MMJ!!! (woooo bad flashback to the sixties)
      Northernguitarguy, my son plays rock band, the drums, we got him electric drums that actually sound pretty cool, but some of the music, I found myself saying “turn that crap down”… I had a nap till that feeling passed.
      Did any fellow Canadians get the invite to the National Conference? Sponsored by some drug companies, wonder if they are giving out samples.
      I think they started a pool at work, betting how long I will bother going in. Lucky for me there is only a small window of earnings I can make that won’t cut off my disability.

    • Anonymous
      February 9, 2011 at 8:46 am

      First of all, congratulation on being able to return to work, I tried full time employment and couldn’t handle it. Fatigue was and is a major issue. I am now a house husband which is a full time job even with just the two of us. I am so sorry for you having to wear the red uniform and sneakers, but if we do have a nuclear attack you will be protected and be able to run fast; well at least faster than flip flops. Maybe for the coffee you can go to an army navy surplus store and get a camel pack to wear under your uniform then you just need to turn your head to use the straw to get a caffeine boost.

      I hope you continue to keep us all informed here, I have enjoyed your post and we all can use a little more humor in our life. I will, want to be part of the coffee clutch and drug swap. I have thought of medical MJ but live in Wisconsin were legally it is not available. It didn’t stop me in the 60’s but oh how we have changed.

      When I returned to work, I copied a description of GBS after my first day. I looked good even with a cane, and people would ask how I was feeling, or what I had, they really didn’t care or want a detailed explanation. My answer was always better then I was but not better yet and I handed them a copy of the GBS Info.

    • Anonymous
      February 9, 2011 at 11:01 am

      Oh my gosh….your post is hilarious!! Take it easy at work and try to take breaks as often as possible. If necessary, get a doctor’s note indicating that you need X amount of breaks.

      Count me in on the med swap. Unfortunately, I don’t have a MMJ prescription, though it is legal in Michigan. 😀

      Take care,


    • Anonymous
      February 9, 2011 at 7:49 pm

      I believe everyone can learn from your attitude…or, is it altitude?
      Feet exploding? Yep! Perfect description!
      And yes? For us all THE GREAT SHOE SEARCH does go on!
      ‘Bunny Feet’ is too true as well…just wish I could find my tailor-fitted bunnies?
      Getting UP is the first step? Not falling down is the second and best step!
      Power to you! And, hugs!

      Harryb? Loved your thoughts as well!

    • February 10, 2011 at 9:21 am

      hey all

      like Harry I don’t go into too much worry about explaining what I have, though I haven’t been working since last May. My colleagues have all been told what happened and when I go in it is good to see everyone. Students can be a bit overwhelming, but are also like little sources of infectious energy at times (infectious colds and flus at others).

      I do tend to tell a lot of experiences while dealing with it as humorous stories. For example, my wipeouts off the treadmill is a good ice-breaker. At this point, people will either do one of two things, one turn into a sympathetic, emotional mush; or they will laugh with me and give me a ‘pat on the back’ because ‘I’m such a good sport’. The rest who become dissociative get my abrupt dismissal and are diplomatically told to kiss my a**.

      wrtrmom, we can jam anytime, bring the MMJ because the way I sound these days you’re gonna need a lot of it.

      I got my invite for the Cdn. Conf. a couple of weeks ago. I plan to attend.

    • Anonymous
      February 10, 2011 at 7:49 pm

      with VERY SHORT ATTENTION SPANS what you’ve got in 30 to 45 seconds?
      HOW short and sweet can you make it to get their ATTENTION for more time? …To explain it? DUH? I try, and you can actually SEE docs doing a ‘replay’ of their memory banks from Med School #201? The only way, say ER docs recall IT? Is IF they’ve had a patient with IT.
      You’d be lucky if you get the ONE outta ten?
      I keep it simpler? I’ve made up a ‘Medical History’ one page sheet that includes:
      Conditions, type of condition? & Date diagnosed
      Meds: Types of Meds, dosages and what for
      Other not daily meds: Topicals or supplements and if needed what for
      List of Docs, their specialties and phone #’s
      So, say in an ER? They ask me what’s happened to you in the past or meds you’re on? Just say…ON THAT LIST..Expect me to remember ALL THAT?
      As for explaining to family friends etc? I just give them the cover page from the NIH. Let them go and look it up. Obviously? IF it’s an NIH issue? It’s not the common cold?
      If they bother to look it up? I usually get a big ‘OH!’, if not, I don’t worry, I tried.
      Good luck and stay as well as you can!

    • February 10, 2011 at 11:47 pm

      Hi Wrtrmom!
      That was an extemely funny post. You’re a gifted comedian and it’s wonderful you’re back to work. You sure must have fun. Acutaly I’m not sure what MMJ is, but I’d sure like to try some.
      Keep updating us with your posts!

    • Anonymous
      February 11, 2011 at 12:07 am

      Pretty sure MMJ stands for medical marijuana?

    • February 11, 2011 at 9:19 am

      Hey wrtrmom

      I often forget to acknowledge others efforts while I explain my own.

      Your return is amazing and your toughness shows

      see you at the med bash

    • Anonymous
      February 18, 2011 at 2:04 am

      I get this comment all the time, as someone tries to hand me a heavy parcel to carry or expects me to lift something.before I finish the sentence of the syndrome…. I get this usually response of but to look at you, you don’t look sick. I feel like saying… oh, you didn’t notice my wiggling around as I stand shifting my body weight from one side of my leg to the other… or you should look again at the big bags under my eyes. from fatigue. by this time people are getting on my nerves. No, really, I’m usually a quiet , polite person trying to explain what gbs is. then people are in amazement.:confused:
      take care always.