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
“I have severe ME and rely heavily on my elderly Mum to be my carer. I have to spend almost all of the time lying down in bed with the curtains closed but am able to walk to and from the bathroom (less than 10 steps each way). I’m only able to go downstairs occasionally, even with a stairlift. I basically ‘live’ in my bedroom. I’m not able to go to any appointments or do appointments by video or phone. I’m not able to go to the shops, my carer does this for me.
“I can only shower and change my pyjamas every 1-2 weeks and even this is a challenge. I’m not able to wash between these times. I use wipes on my face when able. My carer shaved my hair off a few months ago as it was too difficult to look after it. I’m not able to get dressed and so I wear pyjamas all the time. I go weeks between bedding changes as I’m not able to tolerate the exertion and extra sensory input involved in having this done for me. I only manage to clean my teeth about 4 times a week, even sitting down with an electric toothbrush.
“I’m not able to buy, prepare or cook any food or get myself any drinks. I mainly drink from a hydrant bottle as I can use this lying down and don’t need to reach or lift cups. I rely on my carer to bring me food and drink in my bedroom when she visits twice a day. I often have to eat lying down and sometimes need to be fed. I’m not able to do anything around the house (cleaning, laundry etc). My carer does as much as she can, but the cleaning mainly just doesn’t get done.”
“My husband has to use urine bottles during the day, he makes it to the toilet only once a day. He has to have his head shaved and washed in bed – he can only manage it every couple of months. I wash his feet, he washes a different part of his body when he is up to it in a washing-up bowl we keep for that purpose.”
“On an average day, I wake, put on a sweatshirt on top of pyjamas (I get very cold), go to toilet, take meds. I then go to the stairlift (using a Zimmer-frame) to take me downstairs. On bad days, I will need to stay in bed, which can be for anything from a week to several months… When downstairs, I transfer from the stairlift to sofa, using the Zimmer.
“I can read a bit, sew a bit (no more than 15 minutes at a time, usually only once a day), stay in touch with people via Facebook when I can. No contact with anyone other than my husband and an occasional visit from my granddaughter and my niece. Everything other than toileting is done for me. I have a shower once in a blue moon, wash using wipes once or twice a week. That's my life in a nutshell.
“My husband does everything for me. I can still shower and wash by myself, but other than that, I am not able to do anything at all. On days when he's not here, usually due to care duties for his mother who is also disabled, he leaves me a packed lunch and a flask of hot water. It's a lot of work….”
“I’m trying to stay positive, but it's really hard. Life's always been a struggle for me; I was in my 40’s when I was diagnosed with hypermobility syndrome and fibromyalgia and in my 50’s when I was diagnosed with ME/CFS. But I did have a small part-time job at the local school until 2020.
“For the last few years though, my world has just got smaller and smaller until I'm now mostly bed or couch bound. A job, a social life and even a sex life are just a distant memory.
“I’m lucky that my husband and my parents are supportive. Friends have abandoned me, even my brother fails to keep in touch. I can't even watch television or go in the garden for more than a couple of minutes without triggering sensory overload and Post-Exertional Malaise! (PEM).”
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