Guest Blog by Eira Stuart.
My story began with a physiotherapist I was seeing following an accident. After eight months she suggested I was displaying classic symptoms of “chronic fatigue” and suggested I see a counsellor.
I felt offended. I knew that no matter how hard I tried, my body was just not functioning as it once was and I could only make it do a fraction of what I could before; but I couldn't understand why. Her use of the term chronic fatigue also felt very inadequate and quite dismissive.
I continued to face challenges with health professionals who also insisted M.E was caused by a “psychological overlay”. Then I was referred to a neurologist who wanted his neuropsychiatrist colleague to review my case.
I was diagnosed with Chronic Fatigue Syndrome and then the phrases “functional disorder” and “medically unexplained symptoms” were thrown about, which made me feel like my symptoms were not being taken seriously.
Eventually, I found a private biomedical specialist who confirmed my M.E. diagnosis. My life became focused around carers as I was bedridden, living in a dark room and sensitive to light and noise.
I realised very quickly that the average person had never heard of M.E.
The odd person that had responded with statements such as, “Oh M.E. Yeah a woman I worked with had that once,” or “M.E that thing where you're always tired, are you tired then?” or worse yet, “ It's good for some laying in bed all day claiming benefits while us lot have to work”.
I’ve had some compassionate carers who didn't necessarily understand but could recognise I was unwell and were willing to support me. I gave them some leaflets and links to videos on YouTube, which helped them to better appreciate my condition.
The documentary Voices from the shadows was monumental in portraying the politics and medical ignorance surrounding this disease. While care guides written by Jodi Basset, founder of the Hummingbird Foundation, and Nurse Gregg Crowhurst founder of Stonebird provided invaluable resources on how to care for Severe and Very Severe M.E patients.
I had a small team of carers at home who used a candle which they put in the next room. They would close the door so the light wouldn't get through to me, opening it slightly when I needed personal care.
On one occasion one of my carers was present while I was awaiting a GP visit. The GP arrived two hours late saying he had an “emergency”. After a lot of umming and ahhing he said M.E. doesn't exist. My carer replied: “I've got a young woman lying here in the dark struggling to move, barely able to string a sentence together and you’re telling me M.E. doesn't exist?”.
This woman was my hero that day. Despite having no medical training, she was able to recognise my illness as real and something that definitely DOES exist.
But, problems started when I began to need two carers to look after me. More people were involved and with more people came more opinions and more misunderstandings. I was also facing the very real prospect of a nursing home admission as my symptoms worsened and I became more dependent.
The nursing home was accommodating at first. However, they didn't have any experience caring for M.E patients and I don't think they fully realised the extent of the situation. On top of the fact that the average person hasn't heard of M.E, those that have, have usually seen people with milder forms of M.E who are able to self care.
I think that Very Severe M.E is a reality that even moderate or severe patients can't relate to unless they've been through it themselves. Unfortunately, it is an understanding that is arrived at only through the lived experience.
My main concern before admission was the light. I had some familiarity with health and safety laws to know the carers would need some light in order to do their jobs, but I was and remain extremely light sensitive and so I sought ways we might reach compromise.
The disability law service advised me that if light is injurious to health, reasonable adjustments should be made and that the nursing home had a disability equality duty as well as a duty of care. The nursing home did provide a darkened room, however, it was darkened and not blacked out – a very important factor to establish when considering residential care.
The parameters of how much light was acceptable was determined by the staff. I could no longer use candles due to fire safety regulations. Some carers were more willing than others to work with only a small torch while others refused unless the shaver light was on in the bathroom. Some carers put the torches on their phones while others tried parting my curtains, and some would even threaten to leave and withhold care.
I think this should be a parameter that is more clearly defined particularly when caring for Severe/Very Severe M.E. I would like to propose that the Care Quality Commission establish a set of guidelines specifically for M.E patients to achieve clarity that will consolidate the patients needs as well as cater to the safety needs of staff.
There are no minimum wattage stipulations in the Health and Safety law except ensuring that all non- domestic multiple occupancy institutions ensure a safe working environment for the staff.
| Dr Charles Shepherd, Hon. Medical Adviser to the ME association, said to me recently: |
“I’m afraid that we receive fairly regular reports from people who are having problems with various aspects of social care – often due to a lack of education of staff about M.E. coupled with misconceptions about the illness.”
“In fact, I have just received a damning report from the Ombudsman in relation to one such case. We have also held meetings at the House of Lords with the Countess of Mar and the Director of Social Services for England to try and improve the situation.”
There are two problems at present, in my view:
1. People do not understand how light exposure can harm an M.E patient even when the patient has their eyes covered. I can assure you it does. I was left paralysed because a carer came into my room while I was asleep and decided to put an extra light on.
A migraine woke me up. I felt like my brain was in a medieval torture device. I woke disoriented and began sobbing, it was as though someone had turned a floodlight on me and I was like a deer in headlights. I lay there unable to move, unable to react; defenceless against this destructive and crushing assault.
And when someone entrusted to care for you does this it also brings with emotional trauma. How could you do this to me? The carer may even become resentful not understanding why the patient is “making such a fuss” or not understanding why they’re “being difficult, unaccommodating and not allowing them to do their job” or why the patient is” unwilling to compromise” and just like that, a potentially good relationship can be marred by resentment and misunderstandings.
Of course, it is reasonable that the carers need to see to do their jobs, BUT:
a. A healthy person can more easily adapt to working in a darkened room than an M.E patient can adapt to light.
b. Working in a darkened room does not pose a health risk to the carer except for the issue of health and safety which can be remedied with a small light such as a small pocket size torch with a 3- or 5-watt bulb, an LED candlelight or an appropriate night-light.
2. I would like people to know that light is not just a sensitivity. It can cause harm to a Severe or Very Severe M.E patient.
It leads to pain all over, as though I am being burned alive from the inside, and it can provoke a short-term relapse and long-term deterioration if done repeatedly: tremors, migraine, seizures and paralysis.
Exposing a light-sensitive M.E patient to light should be taken as seriously as giving sugar to a person with type-one diabetes. It is not a choice, a preference, or a sensitivity. It is not a “limiting belief”, it is a genuine and debilitating symptom.
We have changed Eira's real name to protect her identity.
The ME Association greatly appreciates every person with M.E. who comes forward to offer us their stories or to share their experiences. We are always on the look out for more especially from those able to send photos as well.
Talking about Real People with M.E. is arguably one of the best ways we have of raising awareness and it can help to bring us closer together as a community.
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