Deadly.

Well I am into my routine so far, that’s good news, however I can’t write my planned post today as real life news has taken hold in my thoughts.

This will be a sad and depressing post so if you are not feeling strong stop here and do not read on for today.

On Saturday morning, I was up early to head for my weekly ballet class, as usual I drank coffee watching BBC Breakfast, it takes me some time to wake and the early hour does not suit me, just the dance classes have changed and this is now the only ballet session at the gym so I persevere.

Stick to the point Chris, I am even avoiding that, so disturbed am I.

So, here goes, there was a segment about an inquest into the death of a young woman with M.E, I was shocked and watched on. She died of malnutrition and dehydration as a result of severe M.E. I cried, it was all so shocking. I know this is a serious illness but knowing this happened to her, hit me hard. I always say stupid things that minimise this curse, like its a battle but it won’t kill us. How wrong I have been. It is a killer! What’s more, our medical system does not support us or help in any way.

I am nervous sharing the details of this woman’s life, its out there in the media, but still I want to be respectful of her family. The details are horrific. She suffered with M.E for 10 years, becoming so ill, she could not sit up, drink or eat. I can see how that can happen. On this morning I was up after going to bed on Thursday night, during that time I could not use the loo, drink or take the pills I needed. I was awake at times but unable to move, even reach for the water next to my bed. Now for me this is a normal occurrence, I can sleep through three or four days a week easily. That is a normal part of my routine when I am doing well. I think back to the times past, months, spent bedridden, I think of the years my daughter has lost from her life. Death feels like a small step away.

This suffering woman was treated at her local hospital, where doctors did not believe in her illness. Did not believe? In this day and age? Medical professionals? They should all be fired! I feel such anger!!

It is hard enough to fight our symptoms, without Doctors denying our diagnosis. This beautiful young woman was sent home to die, even palliative care was initially denied. Its horrific. How can this happen??

Well the inquest at least has spoken out of the failings of the NHS, there are no dedicated beds in any of the country’s hospitals for M.E. As all sufferers know there is no treatment with specialist clinics being very few and then their services are very simple.. For most of us there is no medical knowledge or support available. I have accepted that but now it seems so wrong,

Long COVID has lead to large numbers of M.E, say long COVID and people understand and sympathise, say M.E they shut down, judging, thinking its imaginary! I am so cross but also devastated. My heart feels heavy and my soul wants to crumble.

I tell myself to take the positive, compare how well I am doing and how far from death, but it doesn’t cheer me. So yes I am off on my way to prance and dance, but she died. I say to myself I must reprogram my expectations for my daughter’s life, she is alive and that means something. It must be enough. Still I can not shake the horror. It is a killer! We must not forget that.

So I am through with minimising it, laughing it off like it is my personal freakishness, no more of that! It is real, it is serious and it kills. Time to start speaking up, like some kind of AA admission. Hi, I’m Chris and I have M.E, I am alive but suffering and I could easily die. Time to tell people like a mantra, let those around me know the truth.

I told all at dance of her life and death, it caused discomfort, one woman asked, how did she not eat? Was it mental illness? No she did not refuse to eat, she was denied medical help. Time to explain loss of muscle control and deconditioning, pain, how to explain? Is it neurological then? Yes, yes! That and more!

How to explain? The agony, the hypersensitivity, the loss of bodily control. Even when well I can not wear my fake tooth or use my much needed gum shield at night. I simply can not tolerate either touching against my mouth, like a foreign bomb I fling them out no matter how often I try to acclimatise them, no matter how I train my brain. Who can explain the burning pain of a light finger touch?

I once had a cannula port inserted to my hand at hospital, a precautionary action in case they needed one, the agony it induced was all consuming, I begged and begged for its removal and was treated as though quite mad. I do not wish to make this post about me, but I need to share my experiences in the hope it will help others understand her suffering. Would it hurt to ask and apply pain relief first and to take extra care? No, we are treated as meat in a butchers window.

How to explain that a woman was left to starve to death, in this world! There can be no explanation, can there? Heart breakingly, she had written a letter to her Doctor, begging for help, declaring her will to live, to eat! Even this suggests the judgment she encountered, written off as mentally ill, even if this was the case, didn’t she deserve help, wasn’t there a way. Unfortunately mental illness treatment barely exists in our world either.

I have witnessed a family member, near death with malnutrition it is most horrid, with feeding tubes and ensure drinks and sheer will power, he came back from skeletal. That was luck, it brought to me how easy it is to reach that point and how quickly the body responds to sustenance. Such suffering seems like medieval torture. All too often people are left to die this way in hospital, usually the elderly or sufferers of degenerative illness. We make allowances for it believing there is no way forward; but this was M.E, come on, she had a life ahead, she could have, should have recovered!!

Later in the day, I told my daughter of this brave soul and her struggle. She looked it all up and sobbed, we sat wrapped together, feeling the fear, our worst fears made real.

This woman had a supportive family, two parents caring for her, fighting her corner and it still happened. What chance do we have? Just the two of us, both defective and unable at times to physically care. No I must never go down that rabbit hole. I have worried enough that she could lay dead behind that door and I wouldn’t know for days, as has she, somewhere in there is a bell, for her to ring, to signal, she needs help, but could she even reach it, never mind ring it. I hope that bell never rings.

I can rant for this poor woman until I cry and then until my tears dry and then again. I am shocked, angry, sad, disgusted and utterly bereft.

Please look her up, take the time to see her and think, tell all you can of her life and unnecessary death.

May we all fight on, may her death not be in vain.

In memory of Maeve Boothby O’Neill