Denyse's Story | GBS

It all started with my going away to see my sister Lou for a few days, then going to a gig in Chester. When I returned home on the 19th November 2023, my legs started to ache and very painful. My feet were tingling and felt like I was walking on sponge. I put it down to walking too much and dancing.

On the 20th I woke up, legs still hurting and when I was at work my legs kept giving way. I was advised to go home and seek advice. I called 111 and they advised that they would call me an ambulance. After waiting 16 hours for an ambulance I was taken to Walsall Manor Hospital. 

I had an MRI scan on day two. On day three the Neurologist Consultant suspected GBS. 

By day five, I was struggling to move my arms, legs and body, then I started croaking whilst speaking. 

I was taken down to ICU as a precaution.

Day seven, I was placed in an induced coma as I deteriorated so quickly and developed pneumonia. I was given IVIG immunoglobulin. 

I was advised later I was so close to loosing my life.

Day 11, taken out of coma but still struggling. Had a feeding tube, trachy fitted and on a ventilator for 2 months. Paralysed from neck down. Catheter in. 

This was very hard for me, not being able to do anything for myself and not being able to talk. Being away from my son (19) and my 2 dogs. (Bruce and Tyson). I was also working two jobs and would run 10k once a week.

It was also the not knowing what this illness was and whether I would get back to normal. 

I had that many days I just wanted the floor to swallow me up as I didn't want to be a burden to my family.  The staff in ICU were amazing even though I was having lots of dark days, they looked after me. They would contact family and friends, check my WhatsApp, Facebook and emails as I was unable to. Also, they made Christmas special. Taking me out to see the Christmas tree. It would take about 40 minutes to get me safe to leave ICU.

Physio was hard and had to have Oramorph before any sessions as it was so painful. Some days too tired to try anything. 

On 6th January I had to have a 2nd course of IVIG immunoglobulin and then a nerve conduction study test. 

Weaning off the ventilator was hard and tiring. After 75 days I was trachy and ventilator free. Then feeding tube removed.

After 91 days I was transferred to a Neuro Rehabilitation unit at West Park Hospital in Wolverhampton. Still unable to do anything, fully hoisted. Issue was even though this was a neuro rehabilitation unit they were very short of physios. I would have 30 to 60 minutes physio sessions Monday to Friday. 

After 175 (13th May 2024) days I was discharged home, still unable to walk, fully hoisted. Hospital bed downstairs. Two carers four times a day. Physio at home once a week. 

From September to 10th Jan 25, I had physio as an out patient at the Orthopaedic hospital in Oswestry once a week. Plus I had 6 weeks hydropool therapy. 

This is where I am now after 15 months.

Walking now with two crutches outside daily. When I am at home I walk/waddle around the house with no crutches. I can get upstairs but still a struggle. Got an electric shower chair so can get in and out of the bath. I can cook, wash up. Do a bit of hoovering. It's been very hard as I don't have family that live close. My son helps me a lot. 

I have given my notice to my day job as this was full time, and I couldn't tell them when I would be able to return. My pub job is still there for me when I am ready. 

I am not even ready to drive. I want my independence back to be able to do my theatre shows and weekends away. 

My two sisters Jackie and Louise and my friends Darcie and Clint have studied GBS now and know a lot about this rare illness. 

I have since found out a lad I babysat for many years ago has been diagnosed with GBS. So I am able to give advice to his dad to give him hope.