My Ongoing Journey with Guillain-Barre Syndrome

My recovery from Guillain-Barre Syndrome (GBS) has been one of 3.5 years so far.  There have been many ups and downs during this time, tears and laughter, setbacks and progress, and always physical therapy with a lot of dogged perseverance on my part.

Guillain-Barre Syndrome (GBS)

Considered a rare condition that affects 1:40,000 people of all genders and ages, GBS is an autoimmune disorder that destroys the myelin sheath that insulates and protects peripheral nerves.  Without this covering, nerves cannot transmit messages from the brain to the muscles, and symptoms range from mild muscle weakness to full-blown paralysis.   The onset of the illness is usually within a few days to two weeks following a bacterial or viral infection, but the reason for the immune system failure is unknown.

GBS has no cure.  However, unlike Muscular Dystrophy, the myelin sheath does re-grow over time.  Full recovery is achieved by 80% of affected people, another 15% will have lasting disabilities that range from mild to severe, and about 5% die from complications or poor access to specialized medical treatment.

It came on suddenly

It all began while I was driving to work on the 14th, with tingling and numbness in the tips of the middle fingers on both hands that progressed to both thumbs and index fingers by the end of the day.  I could still type, drive and cook, so initially thought the numbness was due to a pinched nerve in my neck and I booked an appointment to see a chiropractor the next morning.

At 3:00am the next day, however, I woke to find that my hands were floppy and my fingers were extremely weak.  I woke my husband and asked him to dress me and take me to a hospital in the next town, where I was admitted after my legs started getting weak too.  X-rays of my neck and spine didn’t show any abnormalities.  By lunch-time, I couldn’t walk.  I just collapsed onto the floor when I tried to stand up from the bed.

The fear I felt, realizing that I was rapidly becoming quadriplegic, is indescribable.  I was losing my independence.  I was losing me.  As an ex-nurse, I viewed myself objectively and subjectively.  My training in the 70’s had not included GBS.  I had begun to think that I had a brain tumor.  Was I going to die?  Would it be quick and painless?  At the age of 57, I wasn’t ready to say goodbye to my husband, children and granddaughter.

Although my symptoms started on the morning of Monday 14 May 2013, the diagnosis was only confirmed on the night of the 16th after I could no longer swallow, and a second nerve conduction test showed that the nerves in my legs were no longer conducting messages.

Other tests had already been performed that day too, including blood sedimentation rate, full blood count, two CAT scans – one of my neck and the other of my brain – and a lumbar puncture.  The lumbar puncture results showed, the next day, that the protein level in my spinal fluid was raised but the white blood cell count wasn’t.  This, in addition to the negative nerve conduction test, proved that I had GBS and I was transferred to the Intensive Care Unit (ICU) and given intravenous immunoglobulin to halt the progress of the myelin destruction.  My arms and legs were completely paralyzed and I couldn’t even turn onto my sides.  My worst, life-long, fear had manifested itself.  I was quadriplegic.

I stopped breathing

I stopped breathing on Day 7, when the paralysis reached my chest muscles and was resuscitated and hooked up to a ventilator.   My family was told to expect the worst.  The nightmare of surviving from one day to the next started.  I was extremely ill during the first four weeks, assailed by many infections that my compromised immune system couldn’t cope with.  Eventually, the bacteria in my body became resistant to all, except one, anti-biotic and this was reserved in case I developed an infection that, potentially, could kill me.  Once my condition stabilized, the doctors started weaning me off the ventilator so that I could learn to breathe on my own again.  This took about three weeks to achieve.

During the struggle to just stay alive, my family and friends were at my bedside every visiting hour.  The strain they were taking was clearly etched into their faces.  They were suffering as much as I was and I felt both helpless and guilty; guilty because I’d always been the strong comforter but now was the cause of their emotional pain.

The road to recovery

Four months in ICU were followed by 4,5 months in a physical rehab clinic – very long months during which time I was very homesick and missed our pets too.  By the time I left rehab my arms and legs were still useless but I could sit in a wheelchair for up to two hours.  Throughout those months away from home and work, my family, friends and colleagues were extremely supportive and their love and support still carries me through every week of my recovery.  Friends and colleagues rallied around my family and took care of them.  I can never fully express my gratitude for what they did.  They are all truly amazing.

What I learned to adopt early on, during my time in rehab, was the word YET.  My mind refuses to accept that I must be satisfied with the recovery I have attained thus far.  To be handicapped for the remainder of my life is unacceptable to me.  The lack of independence and the inability to drive, cook or dress is terribly frustrating and there are days when the slowness of recovery is just too much to cope with.  To quote Ashleigh Brilliant: “I try to live one day at a time, but sometimes several days attack me at once!”.

After a “pity party” for one, i.e. a big cry, I remind myself that it could be much worse; that there are people who are living in conditions far worse than mine; that I am improving, that I am able to make my days more meaningful and bearable; that every day is a new day and my progress is in my hands. Joining a diabetes forum gave me good insight into other people’s lives. Giving up is not an option.

Giving up is not an option

I receive occupational therapy twice a week and go to a bio kineticist once a week.  I do a range of exercises every afternoon and – yes – I am still recovering.  I cannot climb stairs YET but can walk short distances while holding onto a rollator and can even walk unassisted in a swimming pool.  Hydrotherapy has been very helpful in getting my legs and core muscles stronger.

My fingers and hands – which I have been told by doctors and therapists will be the last to recover – are getting stronger but are still too weak to properly hold a full mug or glass YET, but I did write my name for the first time on 7 March 2016!  This was so exciting as it was the start of more strength to come and I can now even write shopping lists, glue and position mosaic pieces, color in pictures, and do puzzles in magazines!

There have been setbacks.  I have fallen onto my knees twice: once in March 2015 and again in June 2016.  Both falls resulted in fractures that set me back at least four months each time as I wasn’t allowed to walk for 12 weeks and then I had to start rehab on my weakened weak legs all over again.  The last fall was the worst as my knee-cap broke into two pieces and had to be rewired surgically.  These setbacks also took a toll on me emotionally, as did having to be hospitalized again.  It felt as if I had taken only one step forward and then two steps back.  Eventually, I got back to where I was before the falls and started making progress again.

I started working from home about three months ago.  I freelance as a copywriter, article writer and proofreader.  It’s not about the financial reward, it’s about feeling useful again.  You may be thinking “How do you type?”.  I place my Tablet onto a book holder, place it on top of a box, and type using a rubber-tipped stylus gripped between my teeth.  Where there’s a will, there’s a way!

To all recoverees out there:

  • No matter how insignificant an improvement may seem, it’s the start of progress that will become exponential over time.
  • Push yourself.  If you don’t try you’ll never know how much you can achieve.
  • If you’re faced with a challenge, think out of the box and don’t be shy to ask for help.
  • Wake up each morning and list, for yourself, what you are grateful for.
  • At the end of each week, add to your progress list the improvements you made during the past week.
  • Talk to your doctor if you feel despondent or depressed – you may need a mood lifter.
  • Never give up.

If I’ve helped one person through my story, I’ll know I’ve paid forward the good I have experienced to date.

Katina has done everything from being a registered nurse to a specialist in integrated marketing. She is slowly recovering from severe Guillain-Barre Syndrome and hopes to help others also in need of emotional support.