Many months have passed since my last post, during which time life has progressed much as it did before but my recovery from Guillain-Barré Syndrome continues, albeit slowly.

A Facebook GBS support group has thousands of members who are either recoverees or family members of recoverees.  We answer each other’s questions and compare our experiences, which are as diverse as they are many.  We celebrate achievements and commiserate when there are setbacks.

I have been very fortunate in some respects, in that my setbacks are few and my progress continues.  The achievements may seem negligible, even silly, to able-bodied people but to us they’re milestones.  We have to claw back every bit of muscle strength we used to have as the nerves eventually receive messages and our muscles rebuild.

But here’s the challenge – keeping muscles moving until the nerve impulses return, and practising movements, mentally and physically, even though there are no outward signs of progress for months and years.  It’s been proven in studies that using one’s mind to imagine movement aids in the rehabilitation of hand function.  I know from my own experience that imagining movement and willing muscles to work has benefitted me.

My latest achievement, last night, was to open a wooden clothes peg by just 1mm with my right hand (not with the left hand YET).  And it’s that word – yet – that has to repeated over and over.  It’s inevitable that the slow progress gets us down at times but we cannot afford to give up. Ever.

Since the beginning of this year I have been able to open a car door from inside the car, leverage my legs out of the car, push back my fingernail cuticles and, now, start to open a peg.  I suppose this is what is meant by “finding joy in the little things of life”.


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Savor Life

via Daily Proa4empt: Savor

Sitting in my favorite blue wingback chair yesterday afternoon, I had a sudden recollection of a past time.  The sun was poking through the bare winter trees outside, sending individual rays through the voile curtain and onto the side of my face and the wall to my left where the shadows of the dancing branches played.  I was taken back to a time when we stayed at a trout fishing lodge one winter, and we experienced the same feeling of warmth and contentment that afternoon, playing board games with the kids, seeing the sunlight bounce of the wood panels and floors, insulated from the cold breeze outside.  It was a moment to savor.  A memory to bank for a later time.

It’s so important that we do savor life as we live it, appreciate what’s happening on a seemingly ordinary day, to look at our world with fresh eyes every day, so that we don’t miss or overlook a simple joy.  We take many photos when we’re on holiday so that we can peruse them later to recall what we saw but if we did not also savor the moment at the same time, the memory would be flat.

And that’s how it should be every day no matter how mundane the day is.  What are we missing if we’re not fully aware?

Seize each day!  Savor each moment!  Your future self will thank you.


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Banting et al

Oh, that dreadful word. Overweight. It encompasses a multitude of stages, from “puppy fat” to “morbidly obese”. The next associated dreaded word is Diet. They always go hand in hand, don’t they? “I’m overweight, I must go on diet.” I am. I must.

But this article is not about me. It’s about the controversial low carbohydrate high fat (LCHF) diet in the form of the re-emergent Banting Diet that has people losing weight quickly without either starving or needing to increase their exercise levels. (I am not averse to exercise – I’m just very limited, being in a wheelchair with limited muscle strength.) Banters, i.e. the people following this plan, eat as cavemen did before the advent of starchy and sugary foods; they ate protein and plants, i.e. fruit and vegetables. It’s a life-long commitment, this eating revolution.

The Real Meal Revolution” is a book containing information about the latest Banting eating plan and recipes, co-authored by a professor, a nutritionist and two chefs – one of whom is an extreme adventurer. This revolution isn’t something new, it’s appeared before in different formats as, for example, the Paleo Diet and the Atkins Diet. Connected to this way of eating is the prevention/relief of two baddies: insulin resistance and carbohydrate intolerance. If you have one of these, starches and some carbohydrates are not for you.

Dr Phil Maffetone, a clinician, developed a survey and two-week test to assess carbohydrate intolerance. Although some weight will be lost in the two weeks, the real purpose of the test is to see whether your symptoms (bloating, fatigue, etc.) disappear. The test is not a diet, Dr Maffetone has devised an eating plan for long-term success.

There are, of course, many doctors who consider a high fat diet a danger to cardiac health but people with low good cholesterol levels and high bad cholesterol levels have seen these levels return to normal while on a LCHF diet. It is important, though, to see your doctor before you embark on a dietary change to ensure that you do not already have any medical conditions that could be aggravated by a high fat diet, e.g. inherited hypercholesterolaemia (high LDL blood cholesterol).

So, back to Banting. I wanted to know why it’s called the Banting diet, and discovered that it’s named after William Banting, a corpulent undertaker (to the rich, royal and famous) in England, who lived 1796-1878. Banting had previously tried to lose weight through exercise and cutting back on his eating but he actually put on more weight. His overall health was poor, he slept badly, he had to walk down stairs backwards because it was easier on his joints, and his hearing deteriorated. He consulted an Ear, Nose and Throat surgeon, Dr William Harvey, who determined that Banting’s failing hearing was due to his excess weight and recommended changes to what he ate based on Harvey’s research into how fats, sugars and starches affected the body, after hearing a theoretical lecture on the role of the liver in diabetes. Harvey’s recommended diet had no name. The reason why it’s called the Banting Diet, and not the Harvey Diet, is due to Banting having written a “Letter on Corpulence, Addressed to the Public” that detailed his journey, diet and success. The first two editions were given freely, but the third and following editions were sold. A short man at 1,52m, his weight loss over 12 months was 22.7kgs and his waistline reduced by 31cms. His hearing did improve too.

Yes, I am going to Bant using the guidelines in The Real Meal Revolution. My body naturally prefers protein and vegetables and I can easily forego rice, potatoes, bread and pasta. My downfall, however are sweets, chocolates, biscuits and cakes. They will be far more difficult to avoid but I’ll do my best to shun them.

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Becoming a Buff

While reading the section on logotherapy in Man’s Search for Meaning, written by Viktor E Frankl, my mind made a sudden leap to photography. You are now wondering what a mode of psychoanalysis and a camera have in common, but please bear with me.

Having been an avid, but very amateur, photographer pre-Guillain-Barre Syndrome, when I could still hold a DSLR camera, my interest lay in landscape photography with the intent of capturing the essence of what I saw at specific moments in time.

Dorothea Lange, whose iconic photo of Albert Einstein sticking his tongue out at the world is widely recognized, has been quoted as saying “The camera is an instrument that teaches people how to see without a camera”. Lange was a professional whose focus was on portrait photography and she is probably most well-known for her documentary photography for the Food Security Administration, in the USA, during the Great Depression, that made human the ravages that the Depression wrought on people.

Logotherapy was developed by Frankl in response to his experiences as a prisoner in World War II concentration camps, as a result of which he identified the need of people to find meaning in their situations and lives. (Before the war, he had practised as both a neurologist and a psychiatrist.) This meaning can only be found by each person, it’s not something that someone else can decide for us. If this sounds like existentialism, it’s because existentialism is “a philosophy concerned with finding self and the meaning of life through free will, choice, and personal responsibility” – Google’s definition. Logotherapy is the method of counselling used in the quest for one’s life’s meaning.

And this is where the leap to photography came to mind: a photographer finds an image and strives to bring about meaning in what he/she has seen and experienced into a photograph. This is what separates the images taken by a camera buff from those taken by a happy-snapper. My husband doesn’t totally approve of digital images that have been filtered, enhanced, etc. as he feels that they are partly artificial but he does agree that some are pure works of art.

I only ever “tampered” with an image if it didn’t look the way I’d seen it with my own eyes, i.e. background too dark, colour of a sunset too muted, focal point needed highlighting, image needed cropping to follow the “thirds” rule, etc. It’s this mind’s-eye that sees something magical in the mundane both before and after the shot has been taken and gives one the ability to turn it into something special.

Another quote from Dorothea Lange: “While there is perhaps a province in which the photograph can tell us nothing more than what we see with our own eyes, there is another in which it proves to us how little our eyes permit us to see”. How many of us have taken holiday photos that captured what we saw, only to find upon development that there were other interesting points in the image that were only apparent once studied in depth? And we’ve rued missing them because we recognized that they needed more attention.

And this is how it is in our daily lives. We’re sometimes too busy or too distracted to notice that we exist but do not live, that we need meaning in our lives to feel fulfilled, that the mind’s-eye snapshots we take every day as we travel, work, shop, and interact with others only scratch the surface of the richness life has to offer.

In our lives we need to identify the main focal point, decide what surroundings are important, take aim, and refine the outcome. Only then can we be happy and satisfied with the final buffed result.

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Back. Again.

I lied seven months ago.  I wrote my post in October 2016 knowing full well that I was going to end my life that same night.

The daily emotional trauma of coping with my lack of independence and slow recovery, added to my intense frustration with dealing with a new home nurse who was utterly incompetent and sullen, acted as a catapult and pushed me over the edge of reason.

I got the nurse to leave a full container of sleeping tablets next to my bed that night and swallowed them all as soon as she walked out the door.  I woke up 11 hours later in ICU, in my old bed.  Yes, I was disappointed.  Although my mind had given up, my body fought on.  I was stabilised, physically, and transferred to a general ward the next morning.

My neurologist had been notified and she arranged for a psychiatrist to see me.  Dr Steve duly arrived, reviewed my medical history and existing medications, and stated that I needed seratonin enhancers in addition to the anti-depressants I was initially prescribed 3,5 years previously.  He was surprised that these had not been prescribed earlier, but I explained that I hadn’t seen a psychiatrist since 2013.  I was discharged the following day and returned home to a replacement nurse.

Seven months later, I am still recovering physically.  Mentally, I am far less depressed but I do have days when this slow recovery drains every emotional resource that I have built up.  I am reading Viktor E Frankl’s book Man’s Search for Meaning at present.  It details his experiences as both an objective psychiatrist and subjective prisoner in concentration camps, in Germany, during World War II.  In the book he described internment as a “provisional existence of unknown limit”.  He also talks about being able to cope with “how” if one understands “why”.

I perceive my life with Guillain-Barre Syndrome as a life within my life: a temporary existence of unknown duration.  I understand the “why” but struggle with “how” to live this unfulfilled life.  I still have much to learn.

My real name is Katina Hartman; I used Louise as a nom de plume for my blog as that had been the name I chose for myself when I was a young child.

My major achievement during the past seven months is the publication of my eBook Coping with GBS – My Story, Tips and Advice on Amazon Kindle.

Life continues…

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My Last GBS Post

This is the last time I’ll be posting here as there won’t be much more to add in the near future.

I am walking again after my fractures in June, albeit very short distances to begin with, and will probably get back into the aquatherapy pool next week.  To prevent further fractures, I now wear skateboard knee pads when I walk.  I’m a plump 61-year-old grandmother so the image of me in knee pads can be imagined and, yes, it IS a funny one. Thank goodness I still have a sense of humour!

My fingers are still improving slightly every month but it’s unlikely that I’ll ever carry anything heavy again as it’s 3,5 years since I first developed GBS so my chances of making a full recovery are out the window, so to speak.

And that’s okay.  I’ve made peace with it and accept that this is my new “normal”.  Giving up is not an option and I’ll continue with the physical and occupational therapies to achieve every bit of strength that is possible.

Thanks for reading my posts.  I hope they’ve helped at least one person.

If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl. But whatever you do, you have to keep moving forward.

Martin Luther King

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So, I did break something…

…two somethings, in fact.

After waiting a week after my fall I didn’t see any decrease in the swelling on both feet or my right knee, and the pain didn’t lessen either, so I went to the hospital for xrays on 5 July.  Result: a cracked metatarsal (long bone) in my left foot and a broken right patella (knee cap).

I was immediately admitted as the patella would need to be wired together.  The left foot didn’t need surgery and was put into a “moon boot” that cushions and stabilises the foot, and it also serves as a walking boot.

The orthopaedic surgeon, Dr E, scheduled me for theatre on 7 July as, given my Guillain-Barre Syndrome (GBS), he needed me to be checked out by a neurologist and a specialist physician on 6 July before he would proceed with surgery.  Both specialists who had attended to me when I was in ICU three years ago were on holiday, so two new specialists saw me and gave the go-ahead.

The anaesthetist, Dr F, checked me out too and I notified him that I had signed a “Do Not Resuscitate” form.  He was taken aback by this but I explained that I had already cheated death once and didn’t want to be resuscitated again only to left in a vegetative state.  That wouldn’t be fair to my family.  I told him that anaesthetics generally produce three side-effects in me: hypotension (low blood pressuee), hypothermia (low body temperature) and crying.  I don’t know why I’ve cried after previous anaesthetics as it wasn’t due to pain. He didn’t appear surprised and just smiled and said “Oh, you’re one of those!”.  He also assured me that he’d make sure that I would be safe.

When I got to theatre the Bear Patient Warmer system was waiting for me.  I know of this equipment because I worked for the company that supplies it.  The heat makes you feel as if you’re enveloped in a warm cloud.  Lovely!  Needless to say, I sailed through the op. When I woke up in post-op my brain was clear, I was warm, and had no urge to cry.  The first thing I did, however, was check whether my hands and arms were still mobile.  They were, but my body felt weak and my knee was very sore.

My leg was in a full-length telescoping brace, with the knee-lock set to zero degrees flexion.  One hour after returning to the ward a physiotherapist arrived and I had to stand up and walk!  It was difficult because my strong right knee couldn’t do any work and the weak left knee was weaker after its one week of inactivity.  With the physio on one side and a nurse on the other, I eventually stood up and staggered about two metres while holding onto a walking frame.

Dr F saw me that night, said the op had been successful and I could go home the next day if I felt well enough.  The brace had to stay at zero deg for two weeks, after which he would bend the knee to 30 deg for two weeks, and then to 60 deg for the last two weeks.

Getting into the car to go home was a challenge.  I have long legs so sitting in the front passender seat was impossible.  Not being able to walk backwards or bend my right knee meant that I had to slide forwards from the wheelchair onto the back seat – no mean feat as there isn’t anything to hold on to in order to do any self-sliding.  Never have I been more grateful for a transfer board; it formed a bridge between the wheelchair and back seat.  One person lifted and slid me forward on the board while another, inside the car, lifted and pulled my legs.  Success!  Getting out at home was much easier.

Having to keep my feet up all the time is uncomfortable.  The pain medication gave me added problems so I had to give them up and tough it out through the pain as over-the-counter medicine was ineffectual.  My emotional state at home during the first two weeks waxed between resignation and frustration.  On days of extreme frustration, caused by the enforced immobility and increased sense of loss of independence, I felt utterly hopeless and wept, wanting my old life back.

I have, since, pulled myself together.  Again.  I’m halfway through recovery and will start rehab in three weeks’ time.  Dr E adjusted the brace for the first time last Friday and the second adjustment will be done next Friday.  I can now easily bend my knee within the 0-30 deg range and the left foot is also pain-free.

My recovery from GBS may seem to be two steps forward and one step back, but every step now has to be forwards, not backwards or sideways.

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment. – Buddha

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