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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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I think it is about time I did another blog.
I am not sure if it is the sunny weather but suddenly after 10 months with GBS I am feeling so much more active and wanting to do things. That is not to say I am back to normal: my hands make typing difficult and eating awkward and swallowing unhelpful. Walking is still a bit wobbly and I would not go out alone without a stick.
I can’t stop going over everything from the morning I walked out of the house with a paralysed arm until I entered a new house nearly six months later. The horrendous nightmares, the trying to work out what was real and what was imaginery, what was actually said and what was in my head. Iam sure that someone said I was not in pain (true at the time) and that I did not need medication or did I just say that to myself and could not tell the doctors as I was ventilated?
I can still vividly remember serpents coming out of the light fittings in the Intensive Care Unit ward and screaming to the nurse (this of course was in my imagination I suppose!). In the Neurological Ward I could see faces everywhere.
I am so glad that all that has stopped now.
I am still uncertain as to whether my Bulabar Palsy will recover and I would love to hear from anyone who has suffered from this condition. I thank God that I have come through this in spite of the diffficult prognosis given by the Doctors when I was first diagnosed with GBS having been told it was a stroke/ stress/ trauma when I first went to the local hospital before being transferred to the ICU in our main town. I also thank my husband for standing by me and visiting me every day and continuing to care for me at home. It is wonderful to be able to lead a near normal life with his special care of me.

Jennie writes

After a long blog break, things have moved quickly. A real treat this weekend as the Hospital has let me go home on the basis that I return in time for tea on Sunday. What is even better is that I will be discharged from Rehab on Monday. All mobility aids have been delivered to the new house my husband bought while I was in hospital.

Luckily I am quite happy with our new home. My mobility is improving with the aid of a Zimmer frame but my hands only just about grasp a teaspoon to feed myself. My swallow, jaw action and speech normality have still a long way to go before I am able to eat and speak as before. The treatment I received at the hospital was first class, the physios working me hard to get me mobile. I now need action on my upper limbs and help with my grip and shoulders. After almost 6 months of minimal dental hygiene, I fear a spate of tooth extractions, although hopefully the current course of antibiotics will cure the underlying infection. This is one aspect of GBS which is not covered in the text books…

It’s like a baby becoming a child.  The parents don’t see the change as the child grows older.  The change is gradual, imperceptible but real all the same.  The grandparents see it.  A lot changes in two weeks, a month since the last visit.  A little more steady on the feet, a few more words. Change.

It’s the same with Jennie.  Two weeks ago she saw her grandchildren, she couldn’t reach out to them, hold their hands.  Her hand would drop to her lap and she would need help to get it back to the arm rest.  Two weeks later and she can extend her right arm.  It can move down, she can raise it up.  She doesn’t see it but she is making amazing progress.  She really is getting better.

A month ago the discharge date of the beginning of December seemed like a pipe dream.  Now it is looking realistic.  She’s got her goals set and shes meeting them.  On friday she was standing.  Yesterday she could extend her legs up and out.  The left arm is still a little slow and the fine finger movement isn’t there, but change is certainly in the air.  GBS- Getting Better Slowly.

Ever had a curry and woken up in the early hours of the morning with a dry mouth and a desperate thirst?  Hold that thought.  Think of eating salted peanuts and crisps (they sell them in pubs for a reason, they bring on the thirst), wait a while and now think of the craving you have for a drink; focus on the dryness of your mouth.  Now add a mouthful of cheese cracker biscuits to really dry it out.  Wait a while, then hold your nose so you can only breathe through your mouth.  It’s getting uncomfortably dry now isn’t it.  Now put a fan in front of your open mouth.  The tongue is getting furry.  The mouth feels like a carpet. It’s not really very nice is it…

GBS destroys the musscles that make you swallow.  Without the ability to swallow it is nil by mouth.  Nothing, nada, not a thing.  For two months.  The mouth becomes an arid desert, deserate for water, desperate to swallow.  There is nothing nice about GBS.

Jennie has lost one and a half stone in five weeks.  Lots of lying on the back and liquid diet up the nose.  There are better ways of loosing weight.

Five weeks on her back staring at the ceiling, no idea what is going on around her.  Bad dreams creeping up, the nights are the worst.  But let’s focus on the positive.  Yesterday was another milestone day,Jennie was lifted out of the bed and sat in a multi-gym wheel chair for an hour.  Happiness abound.  A champagne moment?  Since all this began we’ve talked about cracking open the bubbly to celebrate something, but the nature of GBS is that recovery is so slow and gradual, that real celebratory moment has yet to come.  Maybe when she can swallow and the oxygen mask is removed we can smuggle in a hip flask of fizzy…  But she’d settle for a cup of tea I’m sure.

Progress is real though.  She is talking, and whilst her voice is not her own (a bit squeaky) she can communicate with us and tell us what she feels.  The physiotherapy is starting in earnest.  With the muscles being pretty inactive for the past five weeks there’s a lot of rebuilding and re-learning to do.  There’s talk of her going to the gym later in the week for walking tests.  Unlike most GBS patients it hasn’t affected her feet that badly.  There’s no movement in her arms, but strength seems to be returning to her right arm.

We are now talking about goals.  The doctors won’t commit to dates but we’ve got a vision of her being home for Christmas.

The visit was not pleasant.

Jennie is free from the ventilator and is now trying to speak. But her voice is not much more than grunts and groans. Too much trying to talk makes her breathless and reduces her oxygen levels.

When I arrive, Jennie is restless and noisy. The nurses seem to be ignoring her, presumably they have tried everything to make her comfortable, but without any success.

Only the simplest of words are decipherable, so for anything beyond ‘are you in pain?’; ‘where are you hurting?’; ‘do you want to be turned?’, and so on, the communication board is still the best way to talk. The most mundane of things – just a single sentence takes several minutes. Trying to second guess the next letter or word seems to slow things down too

FURIOUS AT DAD

Who’s furious at Dad? The nurses? Why are they furious at Dad?  No…?  Not the nurses. Ok…

She gives me a stare as if to suggest she’s furious at me.
Dad’s furious at me?

Getting nowhere – it’s so frustrating. Another futile conversation later and she gets angry. So do the machines – bleeping and buzzing and the lines on the screen going haywire. Oh hell – what have I done? The nurses help her to calm down and things go back to normal.

She can still barely move, and as the nurses attend to her, her eyes dart about seemingly glazed with fear as they do their checks and tests. She looks at the iPod Nano by the bed and communicates to me that she wants me to take it away. I can’t fathom why. Is she worried that it will go missing? Or get stolen?  I wonder how much the ‘prisoner in her own body’ analogy rings true.

She is on insulin now to regulate her blood sugar levels.  The doctors haven’t mentioned this to us yet.

The breathlessness, the erratic sugar levels and the lack of sleep can’t be good for her current mental state. Add this to the sheer hell of it all, and one can’t help but consider how an experience like this will linger in the mind, once the body is repaired.

Text message from my father yesterday afternoon.

Hi good news consultant says he removes tubes tomorrow as very pleased with her breathing machine only on standby he says she should be able to speak tomorrow so I had better watch out

Today looks like being a Big Day.

Today there was a Christening, family gathering, Jennie should have been there.  Everyone was asking after her.  Several questions about this blog, who is writing it.  It’s a shared affair. Posts that are authored by gbsyndrome are me, marc, posts authored by jemsec1 are by my father, Maurice. He is the unsung hero in all this, visiting the hospital every day, sometimes twice a day.  I rang him this afternoon and awoke him from a sleep.  He is tired.  The patient is not the only one who suffers with GBS.