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
Anonymous:
“I have had ME for just over 20 years and whilst I wasn’t severe in the beginning I most definitely am now. I struggle with all aspects of daily living and often need to sleep around 20 hours out of 24 in a day. Even on my better days I can only manage a few hours out of bed.
“I tend to shower once every 3 or 4 weeks with assistance from one of my adult children and have a floor level shower with seat, handrails and waist height shower. If unable to get out of bed I will ‘wash’ using baby wipes in the areas that need it such as arm pits, private parts, face – often needing help to do so.
“I tend to brush my teeth only when I can manage to go out and I use an electric toothbrush whilst sitting on my stool in the bathroom, but if I can’t manage it, I always have water and a spare toothbrush beside my bed to use if I can and feel I need to.
“My daughter is a hairdresser and I have my hair washed at her salon roughly once every 4 weeks as I have long hair and am unable to do this myself. It’s been years since I’ve been able to wash or dry it myself. I tend to have it tightly French plaited for a week or so and don’t touch it, then I get my daughter to take the plaits out and put it in a high ponytail for another week, then it gets put into a tight bun where it stays for the next two weeks or so until it’s washed again.
“I sleep with it up and literally don’t touch it in between. I find sleeping on a silk pillowcase stops it from getting messed up and because its hair-sprayed when put up it stays where it’s put. It doesn’t ever feel or look dirty, and I put that down to it being used to only being cleaned every 4 weeks. I must add that if I’m not up to getting to the salon then it can be up to 6 weeks before it’s washed, but she fits me in whenever I can manage to get to there.
“I use crutches, an electric wheelchair, and a stairlift to get around the home and use crutches for very short distances when I can but couldn’t manage without my electric wheelchair when outside. I also have a manual chair for when I need someone else to push me.
“I tend to only leave the house when I have an appointment for something and am able to go, very often I have to cancel whatever I have planned as I’m just not well enough and it can sometimes take 4 or 5 appointments before I make it because of my health.
“I can only manage one small meal a day at most, and I can no longer actually prepare or cook a meal for myself. I rely on my adult children do this for me, although when they were children, they were young carers as well as it was just me and the 4 children after I was diagnosed.
“In addition, on the side of my bed that I don’t sleep on, I have a large wicker hamper with my ‘snacks’ in it (protein bars, crisps, mini chocolate bars, bottles of water, energy drinks and low-calorie high-energy bars) so I always have food and drinks to hand if I need something to eat. This gets refilled about once a month. It means I can eat lying in bed when I am unable to get up.
“My bed is electric and has a full body massage facility and I rely on this to get up and down and to help with the pain that I suffer from, along with a massaging pad that heats up and lives in a basket attached to the side of my bed. I store my medication in the same basket, and this is delivered to my door in blister packs so that I can ensure I only take the right meds at the right time and am not at risk of overdosing. I also always have adhesive heat packs in it for when I need specifically directed heat.
“I have a giant industrial fan on my bedroom wall that points directly at me in bed, and this runs pretty much 24/7 to keep me cool as I am always overheating. I also have a gadget on my headboard that my mobile phone clips into and means I can use my phone without having to hold it and it can be twisted to whatever angle I am at, so I can watch something on it when lying down on my side by twisting it into the right position which is an immense help.
“I have to have someone with me at all times and often need assistance to even make it to the bathroom, depending on how well I am on any given day. I also have problems with bladder incontinence and consequently always wear pull up ‘nappy’ pants to ensure I don’t end up lying in a damp bed if I have an accident. These are a godsend as they have saved me on numerous occasions.
“I wouldn’t wish ME on my worst enemy as it is a demoralising and debilitating illness, but I live in hope that a cure is found one day and that I may get something of a life back. I no longer feel like I am living, I am merely existing – and that is no life for anyone.”
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