Thoughts on my Guillain Barre Syndrome Experience.
I
have been encouraged by many to document, in some sort of blog, key
experiences and stuff I’ve noticed as I cruised along in this game
called ‘life’, in which I was to experience and survive a diagnosis of Guillain Barre Syndrome. If you are here, it is most likely that you already know what Guillain Barre Syndrome
is and what its devastating effects are or could be. If you don’t,
reading a quick wiki on it will help you comprehend the contents of this
blog better. It's not my intention (or even competency) to medically explain GBS to anyone here. What I can explain, is my experience in tackling my way through it.
Perhaps
this blog may serve as some sort of comfort to anyone fighting the
condition. Looking back as I regain functionality to an almost-normal
life as I write this, I still would not trade the GBS experience for anything
else. Like astronomy, it is one of the most humbling and life changing
experience that can happen to you as a Homo sapien.
So here goes.
It was a dark and stormy night….November of 2011 where I was tackling a stressful event at work at the time when I was struck down with food poisoning. I cannot identify, nor have any scientific evidence, on what the bacterium/viral food poisoning was. My symptoms of not vomiting at all but having almost continuous runny blast watery poop suggest that this may have been some type of campylobacter infection. But this is a mere speculative guess that’s all.
The
symptoms of the ‘food poisoning’ started on 5th November of 2011. I
paid my doctor a visit and was treated with a prescription anti-biotic
(I’ll call it ANTIBIOTIC A or AB-A for short). I felt some serious
abdominal pain whilst with this infection. As soon as I took Antibiotic
A, I felt better very quickly. The antibiotic was prescribed for a week.
I know all too well that one should never interrupt or stop an
anti-biotic prescriptions as this may strengthen some remaining
bacteria, making them drug resistant. As the prescription of AB-A
finished, the abdominal pain and fever returned! Yepp! I still had the nasty
bacteria in me!
Back
to the doc I went, where it was confirmed that I needed further
treatment. This time the anti-biotic was a different one and I was set
up to continue on ANTIBIOTIC B (AB-B) for a further prescription period.
AB-B, like AB-A, worked well on me.
AB-B, like AB-A, worked well on me.
So, half way through AB-B, Wednesday 16th November,
off to shave the accumulated beard I went. As usual I shaped my left hand into a scoop to scoop water from
the faucet onto my face. I did this everyday before going to work.
Nothing extraordinary, except I noticed that my hand had a ‘funny’
shape. The fingers had more space between them despite the fact that I
had instructed my hand to form a scoop. And the little finger on each
hand, just went to its own separate way – it pointed side-ward. The
result of this? Water ran out of my hands.
With the food poisoning saga over – I was ready to face the world and get active again. Having rested for a while, I felt my leg muscles somewhat lazy. Well, you all know, staying non-mobile for almost two weeks, it’s nothing extraordinary. I was thinking on going back to some physical cardio-training to feel ‘stronger’ but at the same time, thought I’d better take it easy for a few more days.
With the food poisoning saga over – I was ready to face the world and get active again. Having rested for a while, I felt my leg muscles somewhat lazy. Well, you all know, staying non-mobile for almost two weeks, it’s nothing extraordinary. I was thinking on going back to some physical cardio-training to feel ‘stronger’ but at the same time, thought I’d better take it easy for a few more days.
On Thursday I rested as I felt slightly tired. That same evening I woke up
and felt my legs crampy. As if I had over-exercised. Again, I thought
nothing of it. I mean, who haven’t felt crampy legs at a point in their
lives? Except I have done no sudden extreme exercise of any sort. Ah
well, I called my doc and explained over the phone, about this. He
suggested that I take some magnesium pills. It made sense that after the
severe food poisoning relief I may have pooped so hard that I’ve
depleted vital minerals which assist intra-muscular communication, one
of which is magnesium.
I also realised that I was finding it difficult to sign and write. But I didn’t think that much of it at the time - labelling it as extreme stress in my head. I was determined to go tackle a work issue I had, so I could settle down back at work. So I continued on. I was eating and drinking normally again at this point in time.
So yeah, I started the vitamin supplements.
On Friday I spoke with a friend (who happened to be a doctor as well) about the 'lazy leg' thing. I suspected that this was some kind of strange side effect of AB-B. But since only 3 days of AB-B prescription remained, I was advised to continue with the administration of AB-B since the 'benefits outweighed potential risks' and besides, this strange feeling of tired legs could have been through lack of vitamins. All made scientifc sense too.
I also realised that I was finding it difficult to sign and write. But I didn’t think that much of it at the time - labelling it as extreme stress in my head. I was determined to go tackle a work issue I had, so I could settle down back at work. So I continued on. I was eating and drinking normally again at this point in time.
So yeah, I started the vitamin supplements.
On Friday I spoke with a friend (who happened to be a doctor as well) about the 'lazy leg' thing. I suspected that this was some kind of strange side effect of AB-B. But since only 3 days of AB-B prescription remained, I was advised to continue with the administration of AB-B since the 'benefits outweighed potential risks' and besides, this strange feeling of tired legs could have been through lack of vitamins. All made scientifc sense too.
Saturday
morning I woke up. I felt no symptoms whatsoever of the food poisoning. I was ready for work the next
Monday for sure, or so I thought. Off to shave, and my hands, they did
the strange shape again. I was having trouble scooping water from the
faucet to my face. I also felt that the leg cramps were still there. I think, a
bit more present than the day before. I popped in the prescribed vitamins in
the morning and ate breakfast. I decided to then rest on the sofa
during the morning and watch some TV and rearrange some of my thoughts
on work-related stuff which was seriously bothering me, causing a taunt
amount of stress on me. Now I’m not a stress prone guy, but as much as I
keep expectations low to avoid disappointments, I realised I had some
things at heart and with sufficient passion and yet I had to come to terms that these would no longer
be part of my life. But onwards with
the GBS experience story...
At
around 10AM I felt like getting something from the kitchen cupboard.
So, I commanded my legs, back and arms to get me out of the sofa. They
obeyed, but damn it, something was wrong. My leg cramps were stronger. I
felt somewhat weaker in getting out of the sofa. But everyone feels
weaker when you have cramps in your large leg muscles no? At this stage (since Thursday evening actually)
my wife started insisting that I get my ass to hospital, but by now, I was on
the ‘taking vitamins experiment’ which I did not want to ruin. So, I
explained to her that if I got worse by the following Monday, then yes,
off to hospital I would go.
Saturday
evening was not better, but whilst on the sofa, I thought that it was
not worse either.. Until I wanted to get something. I would try to get
out of the sofa and manage successfully, but like someone aged 75 years
old would successfully manage. This was strange indeed. My wife was
worried. I was not. Come on. Everyone had cramps, cramps were nasty and often, savage,
cramps made you weak. The hand shape thing? Aaaa, that was nothing, I
thought to myself. Must be the needless work stress I was trying to cope
with.
Every
evening I have one flight of steps to tackle before going to bed. I was
30 years old (31 at the time of writing this blog) – a flight of steps
is a breeze no? Saturday evening I was struggling. My wife had to help
me go up this flight of stairs. I promised her worried mind that if I
got worse, I would go to hospital. Honest.
Sunday morning
came. I woke up and had trouble going down (yes DOWN!) one flight
of stairs, I was having some problems pressing remote TV buttons and the
cramps in my legs was still there. I held on to the railing and went
down my home stairs and sat on the sofa, resting. I took the vitamins of
course.
Sunday
evening came – getting out of the sofa resulted in me holding strongly
to my wife and grabbing nearby furniture. This was not normal. Yes, I
went to Mater Dei hospital precisely at 9PM.
I
entered the hospital WALKING. I was seen by a doctor only at 3AM (YES, I
spent 6 hours waiting with a condition that could kill in as fast as 4
hours if you have a rapid onset – shameful – but this IS the only thing I
could complain about Mater Dei Hospital – although it could have had
fatal consequences as I wanted to go home! I was fed up waiting in the waiting area! I
wanted to go home and sleep, but my wife insisted, and I obeyed – you
obey your wives don’t you?!). Obeying your wives could save your life.
So yeah - I entered the hospital with a limp-walk at 9PM on Sunday 20th November 2011. After 6 hours waiting at triage in hospital, I needed a wheelchair. I was unable to walk without falling. My legs were just too damn weak! WTF?! My symptoms that I could verbally explain to the hospital triage staff were, “I have cramps in my legs and feel weak – I never felt this weak before – it’s like having severely over-exercised”.
So yeah - I entered the hospital with a limp-walk at 9PM on Sunday 20th November 2011. After 6 hours waiting at triage in hospital, I needed a wheelchair. I was unable to walk without falling. My legs were just too damn weak! WTF?! My symptoms that I could verbally explain to the hospital triage staff were, “I have cramps in my legs and feel weak – I never felt this weak before – it’s like having severely over-exercised”.
At
the emergency dept I was inspected by a very nice doctor (all staff
encountered at MDH were amazing! I salute them all, again!!) who noticed
that my symptoms were indeed something unusual. He suspected GBS, but was very careful not to rush. I was transferred to
another section where I was inspected by Dr V. A great accurate nice
doctor who inspected me in detail using pin prick tests (and more).. I
could feel everything. Even a soft cotton on my toes, yes, I could feel
it – but moving my toes, I could not. I realised this at the emergency
department! I had problem moving my toes! I was dexterous with my toes!
They often doubled by my second fingers, picking up stuff from the floor
with my toes! But not today Trev, Toes are OFFLINE!
Amazingly
I remained very calm. At this time, the words Guillain Barre were being
uttered somewhere. ‘WTF is Guillain Barre?’, I thought to myself….
Sounds French, can’t be good (troll face). The A&E doctor cautioned
me and my wife as not to rush and take things step by step until an
accurate certain diagnosis can be obtained. Wise words indeed. I warned
everyone NOT to tell me anything about any disease. I did not want to
read anything about Guillain Barre whilst in hospital. If I did read
anything about the condition, it may potentially ‘contaminate’ what I
was feeling and I would be an invalid patient descriptively-wise. So, I
wanted to remain neutral and as scientifically accurate as possible to be able to describe accurately
what I was experiencing whilst hospitalised.
I was practically paralysed from the hips down and from the
shoulder area to my finger tips. I could still feel everything, but
movement was very hard to do up to my ankles and impossible from my
knees down and ankles down. What a strange feeling! My fingers were
constantly curled. Like a baby almost. Not a FIST. Not open flat. But
weakly curled. Strange (to me - but an expected thing for medical
professionals).
The
Ward doctor came to inspect me. He had a team of other doctors with
him. I eventually got used to all these inspecting eyes. I even felt
safe knowing I was well cared for. I was asked many questions, one of
them somewhat leaving an impression on me was “Are you swallowing?”. I
was. Why would they ask me if I was swallowing? Such a natural thing to
do, you drink, you swallow. Read on GBS to know why I was asked this
question.
I
was put under observation. Apparently they wanted to see how my
regressing condition was doing and meanwhile do a test that diagnoses
Guillain Barre Syndrome with certainty (apart from the 'standard' CT-SCAN, ECG, Chest X-Ray and several blood tests). What is this test for GBS you say? It’s a
spinal tap. Cerebral Spinal Fluid (CSF) is extracted from my back and
tested in sophisticated labs for a particular protein, which, in GBS
patients, is found to be extremely high in value. I asked with hope in
my eyes, whether it was possible that I be spared this test, but no, it
was necessary and therefore needed to be done. Then so be it. I’ll do
it.
I
remember, in hospital, I was eating soup when suddenly around 6
doctor-looking staff surrounded me with a large white plastic container!
Oh crap!!! This was it! The Lumbar Puncture (LP)! I was instructed to
crawl like a baby on one side and doctors behind me (medical students
under STRICT supervision were there too) were explaining to me before
touching me. This helped a lot in depleting my 'speculation reserves' in
my brain. When I was touched by a pen I was told so, when I was wiped
with disinfectant, I was told so. Nicely done. And actually it was less
bad than I speculated in my thoughts. Out of my spinal came out a few ml
of crystal white fluid. I’ve never seen anything like it! It’s like
clear and translucent! Amazing stuff. I was instructed to lay on my back
in bed and NOT MOVE for around an hour. To be sure, I stayed immobile
on my back for TWO hours and moved just my eye balls during such a
period. I was warned that if I stood up before 1 hour has passed; I
would feel a strong headache. I had enough problems as I was, so I
obeyed diligently and did not suffer any nasty headaches when I
eventually moved.
Thanks to the diligence of the medical labs teams, my result was
back the next day indicating clearly a diagnosis of Guillain Barre
Syndrome. {indeed my Cerebro Spinal Fluid (CSF) was found to contain a
particular protein as being abnormally high in count. This is a clear
marker of GBS.}
After
a short period of observation and questions like “ARE YOU BETTER, THE
SAME or WORSE?”, usually answering ‘Dunno, better, I think or the
same’…I later realised that I was getting worse in actual fact, but I
was not quick to admit it. The toilet and shower facility was 4 metres
away from me. It took me 10 minutes to get to it, aided by my wife and a
Zimmer frame. I fell numerous times. I was unable to get out of bed
unaided. The bed had to be lifted high-up from the floor so I would
‘fall’ from it to a standing position. In order not to fall I would
‘lock’ my knees so my bone structure would support me upright rather
than muscles. This technique was not always successful. I still remember
Mr G’s (the person who did a surface EMG
on me) warning - “Trev, you are not well - you are extremely weak! - do not
abuse and do stuff completely on your own as you are now!”. Wise words
indeed.
The weakness was extreme. The following tasks were IMPOSSIBLE to do:
- Slice a Sausage using knife/fork
- Holding a metal knife and fork (even plastic ones were 'too heavy').
- Holding a Mug
- Holding a Cup
- Holding a paper cup half-filled with water.
- Opening a biscuit packet (remained impossible for up to 4 months after being discharged).
- Splitting a biscuit
- Tearing a piece of paper
- Waving properly at someone
- Moving Toes
- Slicing the cooked chicken (hospital food)
- Opening anything that is packaged. Damn!
- Hugging my wife
- Holding my wife’s hand
- Sign my own signature on the sick-leave certificates (for work).
- Write anything
- Scribble anything
- Hold a pen
- Hold a pencil
- Hold a crayon
- Petting a cat
- Handling Fiffy cat (or even a hamster for that matter!)
- Answering my mobile phone
- Letting go of my mobile phone when it was in my semi-curled fingers - I had to 'shake' the mobile away from my hands.
- Go to the hospital bathroom - I was often accompanied, as in a few days since entering hospital, I had developed terrible 'foot-drop'. This is when your plantar/foot (the flat bit) area just DROPS. I had no strength to pull-up my foot/toe area UP. Without such strength, you fall over your own foot.
- And then, you'll have another problem - "getting back up". It's very very difficult with 'foot drop'.
And
in some areas of my foot, hot was felt as cold, and cold was felt as
hot. Now this is some confusing stuff. You could burn your foot next to a
heater and could swear you felt the heater blowing cold cool air like
an air conditioner in Summer. It happened to me. Fortunately the burn, was a minor one.
Hey-
but at least I could feel and talk and joke around like a fool in
hospital. I saw the hospital as a different environment from which there was plenty to learn.
Yeah – I made a few friends there too, despite my paraplegic-like condition.. One should never give up. And there was hope indeed. It was brought to me by Science. I knew that only Science and Technology (together with some raw will-power) would provide save my life and lead me to a better quality of living.
It was decided that I was to be injected intravenously with Normal Human Immunoglobulin packaged in the form of bottles labelled as Vigam Liquid. The process was quite straight forward. Via dripping bottles, clear liquid would flow to my veins, causing my body to ‘see’ too many immuno globulin and stop producing the Trevor-destructing immuno-globulin. It worked. At least, I stopped getting worse, eventually reaching a 1 to 2 day plateau of not-getting-worse-not-getting-better (except for the occasional blood-pressure fluctuations, caused by the intravenous substance). Over further days in hospital (I spent 20 days in hospital), I started regaining movement bit by bit. I could see my legs moving better…in 10 days after being treated with immuno-globulin I could wobble-walk!
Yeah – I made a few friends there too, despite my paraplegic-like condition.. One should never give up. And there was hope indeed. It was brought to me by Science. I knew that only Science and Technology (together with some raw will-power) would provide save my life and lead me to a better quality of living.
The Bottled Life Savers |
It was decided that I was to be injected intravenously with Normal Human Immunoglobulin packaged in the form of bottles labelled as Vigam Liquid. The process was quite straight forward. Via dripping bottles, clear liquid would flow to my veins, causing my body to ‘see’ too many immuno globulin and stop producing the Trevor-destructing immuno-globulin. It worked. At least, I stopped getting worse, eventually reaching a 1 to 2 day plateau of not-getting-worse-not-getting-better (except for the occasional blood-pressure fluctuations, caused by the intravenous substance). Over further days in hospital (I spent 20 days in hospital), I started regaining movement bit by bit. I could see my legs moving better…in 10 days after being treated with immuno-globulin I could wobble-walk!
I still remember the great day where I was being assisted to walk with a Zimmer frame….where I took a GREAT RISK and gave the Zimmer frame a nudge away from me – and did my very first few small weak steps without frame-support! Yes – there was hope that I would walk again! I was so excited – I did walk a few paces without the frame! That was enough though – I sought the frame again as I felt that I was going to fall. But it was a major feat. I walked between four to six paces unassisted!!!! It was amazing. Tears rolled down my cheeks as I looked at Mater Dei Staff, my wife, family members who were there at the time. I would never forget this moment. My legs – they were taking a few commands from me. Just a few and weakly– but fuck, a few days before it was close to none! Yes, there was progress, and that was all that mattered.
And
medical assistance now changed form to PhysioTherapy and Occupational
Therapy sessions. Yes, sitting on balls, walking on funny squiggly mats,
having therapists stretch my legs, arms and feet numerous times daily.
Not moving (without choice now) causes a lot of real nasty things to happen
to your body. Tendons start shortening and yes, I remember my calf
muscles. They were like sacks of jelly water. Before hospital I had
solid calves that functioned well. Not in hospital – they died....or as
the docs used to say, ‘they atrophied’. Muscle atrophy is muscle
wasting. And along with muscle wastage, your morale wastes away too.
But
in hospital, some real morale boosters are in the form of nurses, staff,
physiotherapists, occupational therapists and doctors. And had they not
been there for me, I’m quite certain my recovery would have been
different.
At Home
I
was sent home after around twenty days. Upon my wife opening the door
for me ( a soft door lock key was impossible to turn ) and stepping in the
hallway I heard a long long greeting, NYANNNNNNMIAAWWWWW. It was my
beloved Fiffy Cat! She missed me. She smelled me, then touched me with
her paw. I missed her so much. I wanted to pick her up. She wanted to be
picked up, like before no?. But no.
Picking
a cat up requires arm strength, it requires finger strength, it
requires co-ordination in balance, it requires bending of knees and
supporting own’s (and eventually, plus cat) weight which your foot has
to compensate for by adopting to the changed centre of gravity. I had
none of that – and which is why I felt really bad at home. I thought
that being at home would boost my morale, but it is at home where I
really started realising that all the things I was used to naturally
doing were all impossibilities.
As
soon as the cat greeted me I was craving for a nice plate of spaghetti.
They don’t make spaghetti in hospital (why not?! Dunno... too carby
perhaps?). We’re Mediterranean fond of Italian cuisine!
So
my wife made a beautiful big plate of spaghetti any manly man would
crave for. It was delicately prepared with a good touch of my wife’s
usual care and love. I grasped (somewhat) the fork in my right hand, and
pierced the spaghetti as usual. And then I stopped.
"I
did not know what to do ".
That was the exact feeling. I KNEW what I wanted to do. I wanted to twist the fork clockwise to wrap the spaghetti around the fork and then eventually, into my mouth it goes. But NO. I DID NOT KNOW HOW TO DO IT. In actual fact, I was commanding my hand to do the movements, but there was no connectivity. At all! The feeling that you get however, is ‘I don’t KNOW how to do it!’! And that feeling, is one horrible feeling, to say the very least. Can the brain UNLEARN such basic tasks that rapidly? The same problem was encountered when I tried to fasten/unfasten a shirt button - or any button. At the same time, as I regained movement, these little usual assumed tasks were all key benchmarks in my life as I learnt again how to do them, once the movement was back with some measure of strength after MONTHS of being discharged from hospital.
That was the exact feeling. I KNEW what I wanted to do. I wanted to twist the fork clockwise to wrap the spaghetti around the fork and then eventually, into my mouth it goes. But NO. I DID NOT KNOW HOW TO DO IT. In actual fact, I was commanding my hand to do the movements, but there was no connectivity. At all! The feeling that you get however, is ‘I don’t KNOW how to do it!’! And that feeling, is one horrible feeling, to say the very least. Can the brain UNLEARN such basic tasks that rapidly? The same problem was encountered when I tried to fasten/unfasten a shirt button - or any button. At the same time, as I regained movement, these little usual assumed tasks were all key benchmarks in my life as I learnt again how to do them, once the movement was back with some measure of strength after MONTHS of being discharged from hospital.
As time went by - the nightmare of pain.
Every
evening for the first 3 months after I was discharged from Mater Dei
Hospital, whilst in bed or resting on the sofa, I would get electrocuted
with pain, and spasmed cramp like nasty feeling of electrical pain
twisting sweating pain from the hip down (mostly). Yes, the fragmented
sentence is on purpose – there is no word to describe the nerve boney
pain caused by this condition – and so, I called it SKUMPERT. I had
skumpert sessions all nights for the first 3 months. Paying a visit to
my neurologist, it was suggested that the only real remedy was to ease
the pain was through taking Amitriptyline. What? You see, it was
explained to me that from what I understood, the brain has this pain
centre, whose evolutionary purpose is to orgasm at PAIN. Now since my
nerves were demyelinised and therefore were not conducting properly,
pain was not arriving at this centre, and this centre could be
‘inventing’ pain to appease its sadistic self. Again, this could not be
just the cause of this pain, it could be that my nerves were
regenerating myelin and until it was done with the myelin construction –
SKUMPERT - pain fun for me.
Despite
the Amitriptyline solution to my pain, I decided NOT to take this
medicine despite having a prescription at hand. I would have rather
continued to feel the pain (which I did) rather than creating some
secondary complication caused by this medicinal. You see, I wanted to
remain as drug-free I possibly could, so that when I felt something, I
had no doubt that it was caused by GBS and not by some drug. Perhaps it
was a needlessly stupid thing to do – but that’s what I did.
I
was managing to feed myself (somewhat), shower myself (somewhat) but
not drying myself. To dry yourself, you need a towel. You must be able
to GRAB the towel (despite its weight). As soon as you grab a towel, it
starts throwing you off-balance because of its weight and pendulum
effect – therefore you need to compensate with counter-balance –
something I could not do very well. To dry your lower extremities, you
need to bend you knees just slightly and lower your back and compensate
for having your centre-of-gravity moving slightly forward – BAM!!!! On
the floor I went. So drying myself was on the impossible list of things
that I could not do for a few months. For three months to be exact, I was unable to towel-dry myself. Not without falling like a broken folded chair.
So you think you can dance? - The 'dancing' phenomenon.
I learnt, the hard way, that your foot area (specifically the muscle peroneus tertius and the likes) are responsible for balance. My offline nerves were not carrying signal related to balance and floor textures to/from brain. And so, my brain compensated by balancing through the use of the HIPS. This gives very rudimentary balance, and so I appeared to an observer, as if I was dancing, or wobbling under an appearant affect of alcohol intoxication. And like this, I remained for almost 4 months! I've now danced all my life's worth of dancing, so I have the perfect excuse to avoid dancing at parties or weddings now. With very valid reason! Fitted carpets were my worst nightmare - I often lost balance on them, especially if I had items in my hands, due to their 'soft' visually unpredictable textures. In January 2012 (ie: around 2 months after hospitalisation) I had a new year party which I was determined to go. I had to to be constantly accompanied so that I would not fall. The venue was in a hotel full of various types of fitted carpets and tiles - occupying me with hundreds of assisted route calculations.
So you think you can dance? - The 'dancing' phenomenon.
Zygote Body - A free online tool I used to discover where nerves actually are. I could trace 'pain paths' with accuracy and further verify that the pain was related to nerves. |
I learnt, the hard way, that your foot area (specifically the muscle peroneus tertius and the likes) are responsible for balance. My offline nerves were not carrying signal related to balance and floor textures to/from brain. And so, my brain compensated by balancing through the use of the HIPS. This gives very rudimentary balance, and so I appeared to an observer, as if I was dancing, or wobbling under an appearant affect of alcohol intoxication. And like this, I remained for almost 4 months! I've now danced all my life's worth of dancing, so I have the perfect excuse to avoid dancing at parties or weddings now. With very valid reason! Fitted carpets were my worst nightmare - I often lost balance on them, especially if I had items in my hands, due to their 'soft' visually unpredictable textures. In January 2012 (ie: around 2 months after hospitalisation) I had a new year party which I was determined to go. I had to to be constantly accompanied so that I would not fall. The venue was in a hotel full of various types of fitted carpets and tiles - occupying me with hundreds of assisted route calculations.
And I shall be 100% honest. I
psychologically fought real hard not to let GBS win over my morale and
mind. At times, GBS did win, as I definitely imagined myself permanently
crippled and at moments of weakness, I imagined myself secretly
wheeling myself to a high bridge or a high location……to take a good view
of course….. of course.
But
morale boosters came along, as I continued to regain movement and
fluidity of motion. You see, it’s not just about moving, it’s about
moving with fluidity and not like a rough robot or a flap of a carton
box. As more pain whipped at me, I noticed that, each time I would gain
some better motion in my fingers, legs, general walking (improving from
limping to less-limping to somewhat walking, to looking like walking, to
walking). So pain was soon starting to be associated with the
possibility of improving. It was (and still is) associated with
myelin/nerve repairs in my mind.
Morale boosters were also encouraged very significantly through my wife. She took me vehicle rides and ensured I would not give up. Facebook friends kept the encouregement going too. Despite GBS being, at a glance, physically destructive, it is also emotinally so. Emotional support was given in continous loving doses especially by my wife. Family & friends, I also salute you all for being there. I was not alone. And perhaps through this little disjointed blog of mine, you too will not feel alone, even if you have limited emotional support and are suffering GBS.
Yes, some of my timelines now (and these apply only to me - if you are fighting GBS, your timeline of improvements may be significantly different). 7 months after hospitalisation, I could open a garage-door lock with some confidence. At this time too, I could start buttoning shirts and pants again! 8 months after hospitalisation, an almost-fluid motion to my movements started. I no longer walked too much like a 'square robot'.
Morale boosters were also encouraged very significantly through my wife. She took me vehicle rides and ensured I would not give up. Facebook friends kept the encouregement going too. Despite GBS being, at a glance, physically destructive, it is also emotinally so. Emotional support was given in continous loving doses especially by my wife. Family & friends, I also salute you all for being there. I was not alone. And perhaps through this little disjointed blog of mine, you too will not feel alone, even if you have limited emotional support and are suffering GBS.
Yes, some of my timelines now (and these apply only to me - if you are fighting GBS, your timeline of improvements may be significantly different). 7 months after hospitalisation, I could open a garage-door lock with some confidence. At this time too, I could start buttoning shirts and pants again! 8 months after hospitalisation, an almost-fluid motion to my movements started. I no longer walked too much like a 'square robot'.
When
I first attended my occupational therapy session, pressing an aerosol
can was impossible. My hands could feel, my finger-tips could feel. I
never had the ‘pins and needle’ sensations many with GBS seem to report.
I always felt everything well. Except for some parts of my left leg
where I felt hot as cold and cold as hot.
There
were also no other chemical treatments that I took. It was 'just'
physiotherapy and occupational therapy. I obeyed (and still do) every single
instruction that both my therapists gave me. It was frustrating playing
with putty, balls, blocks and wobble boards. VERY FRUSTRATING - even when I continued such exercises at home. But I
knew that the solution was to shut up and obey. And soon, from unable to
stand after sitting on the neuro-gym chair – I could stand back up –
for a few weeks with extreme difficulty and with assistance and now, 9
months after diagnosis, I could do it numerous times without problems.
Up to 4 months after being discharged, I never sat down on chairs (or
toilets for that matter). I FELL onto them. As soon as I bent my knees,
even by just a little bit, they buckled under me. Standing back up,
required me to hold onto something and push or pull UP.
The Afterthoughts of Today and Tomorrow…
GBS
is an amazing experience. I don’t wish it upon my enemies (that is: no
one – I have no time for such pointlessness as to even have an enemy).
There are however, a few people I’ve met in my life who would benefit
greatly by having GBS and then quickly recover from it (I’ve been told
that ‘quickly’ in GBS terms is around one year). People who need a good
dose of humbleness and humility in their lives. On those persons, it
could leave some real long term benefits.
As
I write this blog, around 9 months after diagnosis, I do not take
my keyboard ticking fingers for granted, I feel my spine doing its job, I
feel muscles supporting my sitting position and I’ve learnt a lot. I
feel all fingers doing what my brain tells them (despite the tremor that
is still evident on both hands).
And
I learnt on how strong I could be when faced with such a crisis.
Perhaps I learnt to be strong when being strong was the only option I
had left.
As
my therapy sessions have now decreased to 2 times every fortnight,
therapists are still working on me to improve my walk to a ‘normal’ one
(as much as possible) and finger interossei movement come back. The pain
decreased to low and tolerable measures now (except for a few nights
here and there).
I’ve
been promised that as soon as I can stand on my heel and have my hands
improve, I’ll be out of out-patient therapy for good. I’ll fight it off
till the very last moment! And work stress that could have triggered
the food poison, triggering GBS? I changed that as soon as I could (a
few weeks after being dismissed from hospital and assisted by my wife to
physically arrive at an interview venue with the aim to change the
workplace conditions). I am now very happy at my new post. It was high
time too that I did something to improve my working conditions and
environment. The catalyst was the soffit tile counting at Mater Dei
Hospital and of course, GBS.
So
my friend, if you have GBS - Don’t give up. It’s an experience I don’t
want any refund for. That experience is mine. And had I the choice an
UNDO, I’d like it to remain there.
Yes,
GBS leaves a serious psychological scar on you (and possibly a few
physical problems too), but in my experience, I learnt a lot, about a
lot.
Life
is an amazing feat of probability, bordering on the improbable, yet it
is. A lot of things changed in my life and those around me since the
onset of GBS. And viewing matters in a long-term fashion (the only way
you should visualize things to increase the chance of being happier), has been an experience I would never forget.
Anyone
still tackling GBS and is reading this - I tell you - stay strong and
fight it. Do physiotherapy, do occupational therapy and keep trying.
Improving your psyche and morale can only accelerate positive effects on you.
And know that IRL, science is our only key to hope. It's what kept me going.
And know that IRL, science is our only key to hope. It's what kept me going.
And
for those of you reading this who never experienced serious
debilitating illness and have been thinking on change, for a long time, a
change to the better, and change in your life, a holiday, a dream, and
yet done nothing about it yet, what are you waiting for, GBS?
-Trevor
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My amateur Photography website:
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