A week in the sun last summer turned into the holiday from hell for Jo Hulks, when sudden back pain turned into Guillain-Barre Syndrome (GBS). Here, the mum-of-three and KCHFT Healthy Weight Team Manager tells us about the scariest six months of her life and all the people she has to thank for helping her along the road to recovery…
It was on day three of our family holiday in France when I knew something was seriously wrong. Before leaving I had been frantically cleaning the house and had started to feel some pain in my back and tingling in my fingers and toes. I just thought I had over done it and decided a week off in the sun would sort out any niggles.
Gradually over the next few days the pain in my back became almost unbearable and the tingling in my extremities started to move up my arms and legs. I googled my symptoms and Guillain Barre popped up but I dismissed it because I didn’t think my symptoms were bad enough for something so serious.
I have worked in the NHS for 28 years as a dietitian and ironically one of my first jobs was working on a respiratory unit in London where a number of the patients had GBS. It’s a condition that attacks your nervous system and affects your muscles so if patients had ended up on our unit it meant their condition was critical as it had progressed to their diaphragm and they needed to be ventilated to breathe.
By day three of the holiday, I was struggling to walk and my husband Ian and I decided we needed to come home early so I could see my GP. And that is when for the first time I became a patient of the NHS and I am convinced that if it was not for the amazing care I received in those first few days – and the many months afterwards – my story could have been as serious as some of the people I used to care for.
By the time I got home, I was really starting to struggle. I went to see the out-of-hours GP at Buckland Hospital in Dover who just happened to be my regular GP Dr Wright, from Lydden Surgery, on her first out-of-hours shift at the new hospital. She took one look at me, knew there was something wrong and sprang into action.
She sent me to the urgent care unit at Kent and Canterbury Hospital with suspected GBS and in 24 hours I was admitted to the neurological ward.
What felt like 100 tests later, including a lumbar puncture and nerve muscle studies, my diagnosis of GBS was confirmed. I remember the look of sheer terror on my husband’s face – he had also spent years working in the NHS and to us that diagnosis meant a debilitating, longterm condition which would end with me being ventilated and tube-fed.
GBS is an ascending progressive condition, which means it starts in your fingers and toes and starts to work its way up your limbs and body affecting your entire nervous system. Treatment doesn’t cure it but stops the progression so you can then slowly begin to recover. I was given five days of intravenous immuno globulin therapy to halt progression of the condition because by this point, I had lost feeling as far up as my waist, half my face had drooped and I was confined to a wheelchair. I struggled to feed myself and couldn’t even drink a cup of tea as half my mouth had been affected.
It was frightening. Not least because it was all happening so quickly. I have spent my career caring for people who needed my help and being as compassionate as possible, but I never appreciated that feeling of being out of control of your own body, having to rely on complete strangers for even the most basic human tasks.
But these complete strangers were incredible. Even down to the tea lady who saw I was struggling to drink so tried every cup they had until we hit one with a spout which helped me swallow. And once she had discovered the cup that worked the best, she kept it aside for me. How’s that for putting the patient at the centre of their care? To me, it really made a difference.
After 12 days on the ward I was discharged home, but not before I had been seen by physiotherapists, occupational therapists, the equipment loan store team and a speech and language therapist. All of them incredibly kind and
caring and made sure I had everything I needed from zimmer frames to a stool for the shower, to begin the slow road to recovery.
They say your nerves start to regrow one millimetre a day so we all knew it was going to be tough going when I first got home. But what helped me through those 12 days was the thought of being at home with my family.
It took a while for me to see any improvement. Progress was slow and I had to move to a room downstairs. I didn’t go upstairs in my own house for three months as I couldn’t manage the stairs. My family had to adapt too and they were all amazing. My daughter, who had a four-month-old baby herself at the time, my granddaughter Molly, came round every Sunday to make the family dinner.
Again the support I had from the NHS was fantastic. In particular Colleen Burford, from KCHFT’s Community Rehab Team, was absolutely brilliant. She found out I liked to swim and decided it would be great for my rehab. She knew I was nervous to go in the pool again so she offered to come with me and made sure my daughter and granddaughter could join us. She just had a way of making sure everyone felt included.
Six months later and I’m 90 per cent of the way back to the old me. I have returned to work – something I really missed – and everyone has been amazingly supportive. I am really lucky to work for an organisation that cares so much about your wellbeing. Colleagues across the organisation have been so supportive through cards, gifts and text messages and my team even set up a WhatsApp group for me to make sure I knew how much they cared and didn’t feel like I was missing out on the latest gossip!
I still feel some slight tingling in my fingers and toes and after a long day at work I am definitely tired, but it could have been so much worse. I am proof the NHS is full of caring and compassionate people and I feel incredibly fortunate and proud that when I needed it most, the help and expertise was there.
What is Guillain-Barre syndrome?
It is a rare and serious condition of the peripheral nervous system. It occurs when the body’s immune system attacks part of the nervous system.
The exact cause is unknown. However, most people develop the condition shortly after having a viral or bacterial infection. It’s thought infection may trigger the immune system to attack nerve roots and peripheral nerves.