The Untold Stories: Severe ME Week 2020

We asked those who suffer with Severe M.E if they would like to submit their story to be published on our blog.

Severe M.E is a part of M.E that is often under-represented and we wish to bring to light the pain and suffering that people go through.

Emma Jewels, 39

“In the space of 3 years, I have lost my job, my hobbies, my subsequent small business, my marriage, the majority of my friends, my autonomy, my independence, the ability leave my home or often even my bed for weeks and months on end.

“Since my diagnosis, no one has monitored this decline in my health, in fact, the medical intervention has been almost non-existent without great pressure applied on my part (when I am able), as everything is just written off as ‘to be expected with M.E.’

“Even then it’s just symptom management rather than any specialised support (other than GET).

“I’m 39. I feel like my life is all but over, and I have no way of knowing if I will ever get any better, or if I will just fade away completely in the end.”

Elspeth, 14

“I’m 14 years old with severe ME I’ve managed to get out of bed 4 times in 8 months.

“I’ve been ill since I was 10 after tonsillitis and sinusitis, bedbound in dreadful pain, I cope best in the dark and need quiet to cope with simple daily tasks.

“I miss school, friends and leading a life out of my home. I desperately want to be well and spend time with my family on holiday or days out.”

Elspeth’s Mum, Ursula tells us that Elspeth was diagnosed at 10 years old.

“She sleeps most of the day and struggles to do most self care but this has fluctuated. 

“Most days she  lays  in bed unable to do anything but on the days I can she talks to friends online but this can be tough as she doesn’t want to stop then suffers and can’t talk.

“She does small amounts of school work from her bed as and when she can. Most days are the same, I pace but sometimes not so good as others then she is set back.

“She enjoys reading and make-up and has her own blog on chronic illness with lots of followers this makes her feel positive.”

Paula Knight, 51

“I’ve had ME since 1993 after glandular fever. It took 15 years for a diagnosis. Three years ago my illness became Very Severe. I’ve been bedbound for 2 years living in one room.

“My husband is now my main carer – I can no longer wash, feed myself or do any personal care. I have a carer for 7 hours per week through social services.

“Accessing this care wasn’t easy: The first suggestion from social services was to use incontinence pads while my husband was out at work. He now juggles working from home as well as caring for me 24/7. We have no family nearby.

“One important problem is accessibility to healthcare: My cervical screening is now two years overdue because nobody will do the test in my home.

“Outpatient appointments require an ambulance crew, and a trip to hospital results in permanent relapses. I have other outstanding appointments that I’ve had to cancel. I’ve had to involve my MP in this issue.

“I’m too ill for visitors, and unfortunately last year I was unable to attend my father’s funeral.

“Enduring the very worst days is unbearable when we know that there’s no emergency help available from the NHS.”

Chantalle Peretti, 38

“In February 2016 I was sent to see the consultant after numerous visits to the GP. They diagnosed not only M.E. but also Fibromyalgia. Since then life has changed so much.

“Nowadays the sofa is my best friend, its where I spend my days, I will always struggle to get out of bed for the day as I don’t want our children to see me stuck in bed as it really upsets them.

“From here I watch the kids playing in the garden with a tear in my eye that I can’t join in.

“I need help to get to the bathroom, to eat, to get drinks, to do most things. My husband has now become my carer, we’re trying to employ a PA but it is so hard trying to find someone trustworthy.

“Days out and holidays are a thing of the past, instead, a trip to the GP surgery feels like a treat.

“I feel lazy because I don’t do things around the house, I call myself a failure because I can’t do things with the kids, yet at the same time, I can barely move my limbs. 

“This illness has not only ruined my life but changed my families life forever.

“I now not only have a husband but he’s my registered carer and my children have officially become my young carers too.

“What did I do wrong to deserve this??”

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.

This image has an empty alt attribute; its file name is Donate-MEA-16.12.19.png

Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!


ME Association Registered Charity Number 801279


ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.