GBS - 21 Months On | Sue's Story

I’m a big fan of holidaying in Greece and usually travel solo arranging all elements of my holiday independently. In late September 2023 the osteoarthritis in my right hip meant instead of island hopping, I’d spend a lazy week in Crete in accommodation with a swimming pool and good access to taxis. 

Throughout the week I’d noticed my mobility was getting a little worse but put it down to my hip pain. I took things easy and used the pool rather than go to the beach. On my final day however I was determined to swim in the sea, I was at the beach early and got a front row sun bed. I couldn’t wait to get into the sea and enjoyed swimming but when it came to get out I struggled to maintain my balance and ended up having to crawl the few metres from the sea to my sun bed. Fortunately there were few people around to witness this! On the flight home that evening I was incredibly uncomfortable, the plane seats were very hard and I spent the whole journey rubbing my knees to try and ease the referred pain from my hips.  

Over the following days back at home I noticed numbness in my finger tips and at first put it down to 4 hours spent rubbing my knees! 2 weeks later it was still there and I’d noticed numbness in my toes. I made an appointment to see my GP, waiting another week to see her. She didn’t know what was happening but requested bloods and a nerve conduction study, I was advised there could be a wait for the latter. I later read on my record that she’d noted my unsteadiness when walking with my stick. 

Prior to my holiday I’d been visited at home by a member of the community reablement team who’d arranged for some equipment to help me with my hip pain; a stick, raised toilet seat, perching stool and bed rail. She returned to see how I was getting on with the equipment and advised that she thought I’d benefit from a walking frame and wheeled trolley, noting the significant deterioration in my mobility. Over the next few days I stumbled and fell three times, fortunately against furniture so I could right myself but the numbness in my feet had now reached my knees and I had strange sensations in my hands. 

The first thing that passed through my mind as I woke each morning was “I wonder if I’ll still be able to walk today?” I decided to put my symptoms into a search engine and quite quickly came upon Guillain-Barre Syndrome on the NHS website, it was like reading about myself.

A few nights previously I’d woken in the night feeling breathless and as 6 weeks previously I’d been prescribed an inhaler during a bad chest infection, I’d gone downstairs and stood by the open kitchen door and used the inhaler. I’d never experienced breathlessness before and didn’t link it with my other symptoms. 

Before I could get to see my GP to discuss my self diagnosis, I fell and after 3 hours on the bathroom floor  was taken by paramedics to my local Emergency Department 25 miles away. Hours later after an X-ray on my ankle, I’d banged it as I fell, I was told I was being discharged home as my ankle was fine. I challenged the young doctor and said I had no feeling in my feet and lower legs, lived alone and it was the middle of the night, discharging me would be unsafe. I told him I thought I had Guillain-Barre Syndrome, he rolled his eyes and quite clearly thought I was a nuisance, he did however admit me. 

48 hours later I had a lumbar puncture and a nerve conduction study, Guillain-Barre Syndrome was confirmed and Intravenous immunoglobulin was prescribed. 

Whilst in hospital I read everything I could lay my hands on about GBS and realised that I’d been very lucky, it hadn’t got to my lungs and I wasn’t in ICU being ventilated. 6 days later and and after 1 hour physiotherapy I was discharged home into the care of my 82 year old partner, who lives with Parkinson’s and has his own home 20 miles away.

To cut a long story short, after 13 days living upstairs over Christmas, walking very poorly with a frame I fell again and was taken back to the Emergency Department.

This time I made it clear that I had experienced one unsafe discharge and wasn’t prepared to be subjected to another. I insisted that I needed a period in my local rehabilitation hospital. Initially I was told I was “too young”(I was 62!) and “didn’t meet the criteria,” fortunately I’d had 30 years experience working in adult social care including some joint working with health, setting up small rehabilitation units in local authority residential care homes. I knew what amazing results can be achieved if the patient is determined and prepared to work hard.

I was perfectly capable of self advocating so put my case. After 48 hours a bed became available and on 29th December 2023 I was transferred to Castleberg in Giggleswick, a 10 bed NHS facility just a short distance from my home in the Yorkshire Dales. This is where the hard work began with daily input from the therapy and nursing team. Little did I know that this would be my home for 3 months 5 days, finally being discharged two days before Easter 2024. 

 In order to facilitate my discharge two handrails had been fitted to my stairs and the wonderful therapy team had worked hard to ensure I could climb a 13 step staircase in hospital. It used up a tremendous amount of energy but having secured a stairlift through the Disabled Facilities Grant, I was determined not to have to live upstairs supported by carers for the 16 week lead in time. For 4 months I would go to bed by 8pm to avoid getting overtired and risking a fall. 

 I learned to pace myself and also set myself small targets each week. Whilst in hospital I’d considered buying a mobility scooter but instead bought a stylish foldable rollator, this would mean I had to walk! The day I was able to navigate my steps and sit outside on my deckchair in the garden was truly memorable.  

I remained virtually housebound for 12 months with a spell in hospital having surgery and recovering from my hip replacement. I spent time making plans and when I felt fed up, looked back at my achievements in my diary! 

In January 2025 after a driving assessment, I began a short course of driving lessons and by the end of the month took possession of a new car through Motability, adapted with hand controls. I’d regained my freedom and independence although having driving lessons after 40 years of driving a conventional car was pretty scary. 

In March I drove myself to Manchester Airport and having booked special assistance, was able to spend a week in the sun in Egypt, travelling solo.  

After a short holiday in Greece in May and a couple of wobbly moments with my rollator on uneven ground, I invested in a carbon fibre all terrain rollator, expensive but wonderfully stable and light. 

This September I was able to get back to my favourite type of holiday, island hopping in Greece with my backpack but now with my trusty wheelie for company! The crews on the ferries and high speed catamarans were wonderful ensuring I could embark and disembark safely, one even took my backpack and ran to secure a taxi for me on arrival at my destination. The highlight was getting into the sea for the first time after two years using one of the SeaTrac devices that can be found in over 200 locations in Greece and can be found on even small, remote islands. https://seatrac.gr/en/map/ 

So 21 months after diagnosis and treatment for Guillain-Barre Syndrome I’ve achieved all the targets I set myself for 2024/25. I still cannot walk without my rollator outdoors or sticks for very short distances indoors, I still experience strange, painful sensations in my feet and fatigue. Even if I make no further improvements, I am grateful for my abilities and quality of life. I got off lightly and always remember it could have been so much worse. I feel humble and full of admiration when I read other people’s stories. 

My targets for 2026…….. 

• Recovery from a 2nd hip replacement  

• Participate in rehabilitation sessions for Complex Regional Pain Syndrome - I have that too! 

• Improve my gait and confidence when using sticks 

• Return to Aqua Tai Chi 

• More Greek island hopping!