Dionne's Story | GBS

I woke up on 19th September 2021, and my whole life changed. Pins and needles in hands & arm, within a couple of hours I was dragging my leg, wrist went limp, slurring words.

I thought I was having a stroke.

Into A&E that same hour. By the end of the day I could not stand, they admitted me, by the next morning my breathing was in trouble and I was paralysed from neck down.

That day I went into a coma & woke up 2 weeks later... still paralysed.

Now I had the hard job of getting better. I was told I would be in hospital for about a year. I thought ‘Hell no!”, so I worked with the physio team and tried so hard to:

• move my legs

• move my hands

• stand up

• hold a pencil, spoon, and cup

• wash myself

In three months everyone was sick of me pestering them to get me up, move etc, I eventually walked up a flight of stairs.

I was allowed home, but now the work began.

Chronic fatigue and chronic pain took it out of me but I kept going. I had a job I loved, a husband who was my rock through out this. My three grown up sons, Mum & Dad, and my friends were a great help too. 

Six months later I returned to work on a phase return basis (teaching staff in Prisons). But because my balance was not great, I was unable to lug my cases around to teach. I regraded twice, finally settling as an administrator. But stress was getting on top of me as they wanted me to return full time, I had not completed a week consistently as my fatigue would hit me and wipe me out for a couple of days, every week. I didn't want to loose my job so I was putting pressure on myself to try harder. 

I was finding I was getting very angry that GBS was ruining my life so I started counselling which was the biggest help. My husband was advised to have some counselling too but he refused it, as he said he was a man and he could deal with his own emotions! 

In August 2024 I decided enough was enough as my legs had started giving way, more and more. I took Ill Health Retirement. At the same time I took a look at my marriage and decided to put a stop to my husbands verbal abuse towards me.

He was getting resentful towards me for not being able to do the things we used to do before the GBS hit. I had had enough of the words “cripple”. 

He moved out 1st Sept 2024.

This was also the day my life started again. 

I had taken a long hard look at what I actually wanted out of life. 

When I was in hospital I wanted someone to re-assure me that everything was going to be ok, give me all the info on GBS, help me understand what was happening to me, how was I going to be normal again. 

So I invested my Ill Health Retirement money in some courses: 

• Trauma Informed

• Energy Psychology

• Spiritual Life Couch 

• Meditation Teacher

• Chakra & Energy Healing 

I am hoping to be a champion for Inflammatory Neuropathies UK, hopefully set up some regular meet ups for people who have had GBS, speak to others in the same position, be supportive. 

So this year is about getting two hip replacements, pass all my courses, love myself and continue healing inside and out ✨✨

Don't give up, it takes time to adjust to the new us, we will come back stronger and better.