People who are severely or very severely affected by ME/CFS often struggle to initiate let alone complete normal everyday activities because of the overwhelming intensity of their condition and the functional impairment it brings. This means family – if available – must become their lifeline providing daily care often in the absence of any support from social care services…
These are just a few of the stories and comments that we have chosen to feature on the website this week. We'd like all the brave warriors who are battling severe and very severe ME/CFS – and the wonderful people who care for them – to know that you are not alone in this fight.
There is a wealth of experience and support available in the patient and carer community, and the ME Association is doing all that it can to make health and social care and disability benefits more accessible to anyone in need.
We might not have an effective treatment yet, but we are committed to working with the NHS and social care services to implement the 2021 NICE Clinical Guideline's recommendations and with the Department of Health and Social Care and its' working groups, to improve research investment and healthcare provision as quickly as possible especially for the those who are the most affected and often the most neglected.
If you would like to share your story, whether it be about your current or recent experience of severe and very severe ME/CFS as a patient or as a carer, or perhaps as someone who has experienced improvement and can reflect on where they are now, then do please get in touch: Feedback@meassociation.org.uk
Virginia & her son Rob:
“These are from me and my son aged 32 whose ME of 6 years has become severe for the past 18 months and who has not been able to leave the house or even come downstairs for 12 months.
‘Severe ME is really, really boring. Most of my time is spent resting, doing nothing, so that I’m able to do the few things I can do. A lot of what I want to do is so far away. A bath would be nice. I’ve learnt a lot about patience, mindfulness and gratitude though. I’m especially grateful for my mum, who looks after me every day.’
“From a mother’s point of view, I see his life slipping away. He used to love music, playing guitar, banjo and double bass but now finds any music overwhelming. He loved walking the dog and watching films but now he struggles to walk to the bathroom.
“We used to discuss politics and music and listen to comedy on the radio but now he can only tolerate the presence of anyone in his room for a few minutes at a time. He can’t sit in the garden watching the cat dash about, talk to friends or family but still he’s interested in the world despite being so isolated from it.
“I want him to be happy and healthy with good friends to support him. I want so much more for him in his life.”
“I barely have the energy for anything, and my 74-year-old mum does most things for me although she is still trying to work and cannot claim carers allowance as she gets a pension.
“I am now 46 and I got glandular fever at the age of 8. I was diagnosed with M.E. by Betty Dowset when I was 12. I have since attracted Fibromyalgia, Graves’ disease, hypermobility, and other diagnoses, and many other symptoms that are not diagnosed.
“I struggle with all activities of daily living and don’t know who would help me if it wasn’t for my mum. My health only seems to get worse with age. My needs are complex as they often are with M.E., and it would be very difficult to employ a carer for when you need and are up to having the help! Many friends and family don’t understand or believe I am unwell.”
“I’ve had ME for 9 years and was diagnosed after an operation back in 2013. I was exhausted after the surgery and couldn't get back on my feet. I got the diagnosis a year later and it came with Fibromyalgia attached.
“I managed to keep working for 4 more years, but then my dad got ill. I couldn’t work anymore, I was mostly housebound and bedridden, but was lucky enough to get early retirement and a pension.
“I hit an all-time low with symptoms and was diagnosed with severe ME, spending days, weeks, and months in bed. Having to go up to Scotland to help my mum and sister with arrangements and watching my dad fade away took its toll, but as my sister has Parkinson’s and my mum doesn't drive, I had to keep pushing, no matter what.
“ME has placed a heavy burden on my family. My husband works full-time and has to look after me and our 2 children (7 and 12 at the start). I used to do everything with my daughter, we'd get in the car and go shopping or get a drink and a bun at the drop of a hat. ME has impacted her life so much. Parents evenings, days out, having friends over, have all been affected. She started getting headaches a year after I got ill and has struggled ever since.
“I think my husband now just sees me as someone who is always ill, in one way or another. ‘Can't you just…?' is still a phrase I hear a lot from family. Life is hard and painful, from not being able to sleep much at night to having ‘brain fog' so bad, my head feels like it wants to explode, I can't think straight or join in a proper conversation.
“I'm a billion miles away from the happy, bubbly, confident, passionate and ambitious women I used to be. But if you try to look on the bright side, I’m always here for my children (albeit from my bedroom), a captive audience! I have more time to listen properly to their day, help (or not!) with spellings and stuff. I have my family and that's all I really need.”
Please note: The featured image used at the top of this blog is not of anyone who kindly provided their story or comment. It has been taken from the Real M.E. campaign which is enabling us to use representative images of people with ME/CFS rather than rely on stock images that are often unsuitable for the subject. If you'd like to learn more about the campaign or wish to submit your own photographs then please get in touch: Feedback@meassociation.org.uk