Thank you to Bronya who submitted this story about her experience with GBS. On 15th March 2024 she “began [her] journey into GBS land”, and at time of writing, it’s now the 15th March 2025 and we’re thankful Bronya was able to sit and pen this piece to share with our community. Let’s dive in.
15 March 2024
It’s a year to the day since I collapsed and began my journey into GBS land.
I was 75, in good health but I was having problems with my feet. I would get into bed – hot water bottle, bed socks, nurofen and spend the night in pain – as though my bones were being filled with ice. I booked to see the GP and at the same time requested a Shingles jab. An aunt of mine had experienced 20 years of nerve pain and I didn’t want that. I had debated with myself as I had no memory of having chicken pox.
I had the ‘Shingrix’ jab on 7 March 2024.
Meanwhile, I was talking to my GP because I really felt unwell. On 14 March my knees kept buckling and I felt so ill (and I’m not a winger) that a neighbour – with an illustrious career as a nurse – came over in the evening and called an ambulance. The Paramedics came and did tests, could find nothing terrible and left.
I gave my neighbour a door key and booked my dog walker for Freddy. I had a dreadful night sitting in a chair.
Early 15 March I ‘bumped’ down the stairs so I could let Freddy into the garden. Then I collapsed. I wrenched my right groin (still painful) and my right foot jammed into the bottom of the stairs.
I know I screamed. Fortunately I was carrying my phone. I could not lift myself off the floor and phoned my neighbour.
And then it gets misty. I remember the paramedics, my dog walker, my friend Sue, and my neighbour in the kitchen at which point my booked electrician turned up and turned tail.
Off to WGH with a memory of conversing with the female paramedic. Then nothing.
In Hospital
I still have memories of the dreams I had – full technicolour, obviously peopled with my visitors. The very kind African who was dressed in ecclesiastical robes and bathed me (all true). In many dreams I was struggling to stand but my right foot wouldn’t let me. I was desperately cold (my vet brought me triple layered bed socks).
I haven’t seen detailed notes from WGH. I know I was in the ICU. I’m told I had a nurse sitting with me, surrounded by 6 monitors. A ‘newbie’ did a lumbar puncture and I had a haematoma (the timeline was questioned when I went to Alderbourne, Hillingdon).
There was a question mark over GBS, Meningitis or CNS infection but I received IVIg (plasma infusion). My nurse neighbour later commented that I showed classic signs of GBS.
The Consultant was telling friends things were 50/50 and I still struggle not to cry at this point.
I had a catheter. In fact I had it for 4 or more weeks. I believe I was moved into AAU and then back to ICU. I was not on any drugs but my mind was mangled and even now I am working on my short term memory.
Another very good friend, M, became the centre of decision making. I don’t know how my friends found out as they were all in separate groups. My neighbours set up a WhatsApp group that I was on, and those further afield a separate one.
Things moved on. The food was good but I couldn’t swallow – and I wasn’t going to let anyone know that! I absolutely went off sweet things which was a pity with all the chocs I was being given. I was definitely thirsty (though I have now lost my taste for wine!).
I was moved around a number of wards and then, as a prelude to going to neuro rehab, I had a COVID test. I had been coughing and I had had a raised temperature, and Bingo! Isolation.
I am slightly claustrophobic. The windows were locked shut and nurses wanted my isolation room doors shut. I admit – I had a ‘melt down’ most days.
During this, a serious breach of my privacy occurred when a partner of a relative claimed I had asked if he would take and open my post and pay any bills, he went on to text me that we should discuss the ‘Administration of my Affairs’. I showed it to the Ward Manager at Alderbourne who explained it was a Safeguarding issue and offered to take it farther. I probably should have, thinking back, but it would not have undone the damage.
I had set up an EPA (Enduring Power of Attorney) for finance in 2002 – a precursor to the current LPAs (lasting power of attorney), but my accountant dashed between WGH and Hillingdon with new LPAs and a codicil changing who would care for Freddy if…
[GAIN Note: whether due to medication, or the impact of a neuropathy, people with these conditions can be in a vulnerable state mentally – as Bronya says: ‘my mind was mangled’. It’s important, for friends and family, to monitor any important decisions or unexpected communications. Where possible, involve someone with a LPA and/or hold off on choices. Don’t be afraid to consult the Ward Manager like Bronya, they are trained over Safeguarding issues]
Rehab
So! Off to Neuro Rehab at Alderbourne, Hillingdon for four weeks. I live in Hertfordshire with a GP in Hillingdon – it caused major problems for the bean counters. I started a diary in an effort to re-charge my memory.
Greeted by Raj, the Ward Manager. Put into a ward of four ladies; a very thorough check over by Consultant Arturo and Dr Idris. Tea ladies, nurses, Drs, Physios all hellbent on recovery and absolutely lovely. Brilliant. I was so ‘wowed’ that I wrote a piece for CQC (Care Quality Commission)
I stopped being bed bound and left four weeks later walking with a stick (though not before a Consultant fixed for a Doppler scan because my legs and feet were so swollen).
I will admit I was hyper anxious. The windows were not openable and to get out of the ward, you needed a pass to open the doors. At night I would check the fire exits – we were up four stone flights and I would quiz the staff on fire drills.
The Occupational Therapist fixed for me to have Enablers for a month when I got home and access to the Community Physio .
Home, and Support in the Community
Meanwhile I spoke to various Care Agencies and debated where or with whom I should re-enter the non-hospital world. I found a local firm of lovely ladies and they stayed ten long nights followed by a week of early mornings. They persuaded me to have Freddy home for the weekends after which he returned and a walker took charge of us both. At the start, I could only just walk 100 yards.
The lunch time Enablers were on hand when I did my floor exercises and the evening ones accompanied me on walks. I had a Hungarian Masseuse to work on my legs and feet. I joined a local authority Swimming for Stroke Victims led by a Therapist. I have a private Neuro Physiotherapist and now go to the local hospital for Pilates for Osteoporosis sufferers.
Neither of my private medical insurers were of any use but I have since used one to have Counselling. Despite being grateful to be alive, I have been depressed and lonely – the hospital always had someone to chat to. I understand trauma affects how memories are processed.
I was due the RSV jab and a friend gave me the NHS notes. A 1 in 1000 chance of GBS. No thanks!
Other comments on the GAIN site mention bowel and bladder problems.
The evening nurses would ask if we had ‘opened our bowels’ – well I knew what would follow and kept quiet but I am still having problems. As to the bladder, I had my first UTI and have urge incontinence. I don’t think the catheter helped.
Now – I still feel as though someone has done a Chinese burn on my leg and it can be quite painful at night and my skin objects to clothes against it. And my right buttock and right back still have a numb sensation.
But my neighbours have become firm friends and my other friends have wrapped themselves around me. I am well blessed.
Bronya, 5 March 2025
