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 was diagnosed with severe ME 20 years ago following anaesthetic/surgery the year before. I was 51, bedridden, couldn’t sit up, eat or speak. I experienced weakness, tremor, non-epileptic seizures, and many other symptoms. I was in cardiac critical care and then transferred to a neurological ward where I spent several weeks until discharged in a wheelchair and told to do cognitive behavioural therapy and graded exercise therapy – which caused a severe relapse on top of what was already ‘severe’.
“I have dysautonomia/PoTS, Hypermobility, Raynaud’s, heart arrhythmias, bradycardia, atrial tachycardia, severe allergies, autoimmunity and inflammation that always shows in blood tests, endometriosis major surgery in my 40s, GERD, gastroparesis, coughing after food, reactions after food, dry eye and other eye conditions which I’m told are to do with dysautonomia, immune system overdrive, since I had the Covid-19, pneumonia, and the Flu vaccines last year. I have occasional bowel incontinence, daily bladder incontinence, sometimes as much as 20 times on a bad day. The increased laundry and changing wet clothes and bedding is exhausting…
“I have to lie-down flat before I’m going to eat so that I have enough energy to sit-up and eat. I can’t eat what I’d like because of allergies and digestion, as chewing tires muscles so porridge slips down more easily but not an occasional ‘fry up’ if someone cooks it! I eat easy to digest foods but still have to try and sit up for 30 mins after eating (as advised by dietician and speech therapist) but often can’t manage to so have to lie propped up. The dreaded coughing starts after eating and sometimes red rashes, so I take Piriton syrup/Salbutamol as required.
“Pain is a constant and at times it is almost unbearable. Ice packs, heat pads, paracetamol doesn’t touch it. I’m prescribed stronger pain killers but as I have adverse reactions to medication, I haven’t taken them. This year a GP gave me short course of Prednisolone which absolutely worked wonders for the five days I was taking it. I’ve was on a low dose which helped but they’re not recommending it long-term. All my symptoms improved, and I think it reduced the inflammation!
“I have to make an appointment (with myself!) to have a bath/hair wash, and it can take days as I wait to see if I have enough energy, then PoTS kicks in and I lay on my bed and another day has gone by without one! My adult son lives with me and makes drinks etc, and we have microwave meals delivered most of the time.
“I look after my grandsons in the school holidays when my daughter has to work – and I do it from my bed, the sofa, or a chair etc. They think nothing of it as it’s always been this way, they get the children’s monopoly out (I’ve got curtains closed due to light effecting my eyes and cotton wool in my ears to reduce the noise of happy chatter. They set a place for me in the game, they throw dice for me and take my turn – my neck, shoulders, and back won’t allow me to sit up for long periods.
“I’ve got an NHS recliner wheelchair which is fantastic as it allows me to go out of the house for hospital and doctor’s appointments in a semi-upright or recliner position, and it can recline flat and has leg rests, so it becomes like a bed.
“Before the pandemic my family would take me out for an afternoon to the seaside. When I needed to lay flat and rest for an hour due to the onset of serious symptoms that would once have hospitalised me, they’d park me by a coffee/hot doughnut stand and I was aware of a coach load of visitors arriving and queuing near where I was resting! Those days are now few and far between, they utterly exhaust me, and leave me in excruciating pain, so I am mostly here at home lying on my bed or sofa.
“I had carers years ago from an agency, but it was difficult as they couldn’t understand my needs and I had to explain everything to each new carer who came into my home. It was too exhausting to continue. My family act as my carers now. Severe ME effects every part of my body and when I had a severe relapse in 2016 there was talk of tube feeding as my digestion deteriorated and nothing would stay down.”
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