Severe ME Day – 8th August 2020

From the 25% ME Group – https://25megroup.org/severe-me-day-2020

Severe M.E Day – 8th of August 2020

“A day to remember everyone who is suffering or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis.

Severe ME Understanding & Remembrance Day : This day aims to bring public attention to the illness for the sake of all those presently suffering from Severe Myalgic Encephalomyelitis and to remember all those who have died from ME.

A day to honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.”

From the ME Association – https://meassociation.org.uk/2020/08/merryns-story-severe-me-week-2020/

Merryn’s Story: Severe ME Week 2020

Caring for someone with Very Severe M.E is both an honour, a privilege and a responsibility so difficult it is similar to walking through a field of landmines, not knowing if the next step you take no matter how important and necessary is going to have devastating consequences.

My name is Clare and I was a full-time carer for my daughter, Merryn Crofts from the time she became ill aged 15 to the time she died aged just 21 from Very Severe M.E.

During this time her care needs changed from needing help washing and dressing, needing support to access school, needing to use a wheelchair and other equipment, such as stairlifts etc, to then becoming housebound, then bedbound with total dependency for all care and nutritional needs. One of the things constant throughout was the need to recognise change and act quickly. Sadly, in the case of specialist services and equipment this was never timely enough, with much needed equipment taking so long to arrive Merryn’s needs had changed and deteriorated, meaning she got no use from them. I could write so much about this or the care needed during hospital admissions but for this piece I am going to focus on the care Merryn needed at home and as she became more severe.

I am writing this on a remote beach looking at misty mountains in the distance, the sea roaring, wind in my hair and gentle sun on my face. Merryn would have loved it here and such simple pleasures and feelings as these but they are ones which are so far beyond anything she could have tolerated during her illness. The noise of the sea would have been torture, the wind on her skin unbearable pain and the light impossible to even contemplate.

Merryn was permanently bedbound for the last four years of her illness, unable to lie at even the smallest incline, in a dark room, unable to bear light, noise, touch, smell or movement, needing to be fed 24/7 by a tube in her chest leading to her heart as due to gastro-intestinal failure her stomach could not process even the smallest amount of enteral feed, never mind food or water. Often catheterised although this was not always possible and in unbearably horrific pain.

As a carer one of my sources of help and inspiration was Greg Crowhurst whose own wife Linda suffers from Very Severe M.E. He has written extensively about M.E and the care needs of people with M.E in his book Severe M.E Notes for Carers, developing what he calls the Moment Approach. Greg stresses the importance of a partnership approach “based on unconditional valuing, warmth, empathy and equality.” We found the Moment Approach to be helpful as Merryn’s symptoms and the severity of her symptoms could change rapidly. Recognising the right moment or equally importantly the wrong moment was essential to prevent further deterioration or suffering. How do you care for someone whose needs are so complex that your very presence in the room can cause so much pain? The only answer is to be led by them and also to adapt your being to being smaller, quieter, a part of the furniture.

It wasn’t only within the room that could cause harm. A kettle boiling, a washing machine, meals being prepared, the list goes on. All these actions had the potential to cause pain and further deterioration, so had to be planned for and performed as quietly as possible.

During the last two years of her life, Merryn received palliative care from her local hospice at home team and I cannot praise them enough. They learnt about M.E and respected the protocols we had in place. Just this alone was more than many other professionals had done. They worked in a holistic way, looking at Merryn’s symptoms and what could be done to help with these while being careful not to trigger further deterioration. Merryn had weekly Consultant visits at home who understood that Merryn often could not tolerate them in the room and understood I needed to speak for her, contrary to previous hospital doctors who saw this as a need for referral for safeguarding procedures, despite ourselves and Merryn’s M.E Consultant explaining why this was necessary.

Syringe drivers were set up for Merryn that delivered continuous pain relief, unfortunately this required a daily nurse visit in her room. Even though this was necessary and they set it up as quickly and quietly as possible, it was enough to cause deterioration in Merryn’s symptoms. They could however, prescribe medication and at doses that GP’s couldn’t. Despite this, her pain always remained high, when it was even more unbearable she could have top-up injections. Unfortunately, although these were much needed, Merryn had to weigh up the need for extra pain relief against the effect of having a nurse in her room, which could cause deterioration in her symptoms.

It is impossible to describe the full horror of Very Severe M.E and the impact of every single action, no matter how needed it may be. I will end with Merryn’s own words, which she wrote aged 18 years old, three years before her death.

“Having Severe M.E is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day.

It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors and feeling worse about saying no every time someone asks again.

Months and months in hospital.

Severe infections. Breathing problems. No immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.”

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