The Count ME in Campaign – Sarah’s story

Part 1

I am a 46-year-old perimenopausal woman and a single parent to two children with Autistic Spectrum Disorder (ASD) so, you know… I’ve got a different type of patient spec for the NHS now, I guess.

I was diagnosed with ME in 2019, fibromyalgia in 2020, hypermobility spectrum in 2021, generalised anxiety disorder in 2022, and functional neurological disorder in 2023.

My children have been left to pick up the pieces of this disease for the last 5 years. I have a Social Care manager who does not know what M.E. is or any of the other conditions I have. 

I have had blood tests that have come back as normal, and I feel I have been sent around the houses.

I receive an ‘award’ for a PA but cannot find anyone who can work 6 hours flexibly each week to help to get me to and from appointments. I have been waiting a year.

I feel that if medical/social staff understood the wider-reaching consequences of an M.E diagnosis, then maybe I and others with M.E would stand a chance at navigating the cavernous hole it brings that swallows patients and families alive.

If I mention, I have M.E. when at an appointment people ask me what that is.

“Is it being tired all the time? I feel like that a lot, but I just get on with it”

A nurse at my appointment

“Yes, you do have a lot going on”– A doctor attending to me.

Then there is my favourite, “You are a complicated lady, aren’t you?” – The A&E doctor who assessed me for a collapsed lumbar spine and coccyx.

They saw that I have M.E. and generalised anxiety disorder and discharged me with paracetamol!

If I tell them I have a neurological condition that affects my mobility and cognition I usually get

“you need a good sleep, have you tried yoga? Tai chi?” 

If I explain I have something that is often described by the World Health Organisation (WHO) as affecting sufferer’s lives in ways far worse than MS, Lupus, Cancer, and Rheumatoid Arthritis, I get asked why I’m out of the house using a stick and that I’m lucky because XYZ can’t get out of bed.

At this point, I have given up trying to explain M.E to people and try not to scream.

Why can’t the NHS and DWP work out what to say, put it on a ton of Post-it notes, and I will just wear one on my forehead when I do leave the house/my bed to save me having to do their job? 

Part 2

This all started when I contracted Lyme disease which infected my entire system for a whole year.

At the time I could work three teaching jobs, do Yoga 3 times a week and was a solo parent but I started sleeping in between and slowly losing my neurological and muscle function and my mobility.

I reached out at the time to a young carers group via my school. They helped put me in touch with other parents who who are cared for but the group’s activities are now too much for me to cope with.

My ME is stable at a moderate/ severe level despite trying to rest and pace.

My son is now twenty and he is my full-time unpaid carer. He has just finished college and has his own health issues.

My daughter is fifteen and recently diagnosed with ADHD. Whilst initially supportive and caring, she soon became discontent and opposed to any requests to help at home or be seen with me on a mobility aid. 

We have zero family support and very few friends. Apart from the young carers group we do not have anyone else we can turn to.

Trauma and M.E often go hand in hand. 

I mobilise using a crutch or stick, a scooter, or a wheelchair but like the campaign says, if you see me, it’s a ‘good’ day and probably unavoidable that we leave the house to get to hospital or a pharmacy etc.

Life is tough, but so am I. I will not give in to this.

Sarah Watson

I will listen and research, and I will fight to regain my health and independence and that goes for my children too.

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