Another Voice from the Shadows; Another Candle in the Darkness

 

So proud of my lovely mum yesterday.

I've been too sick to go anywhere but the sofa since last week. That was when I managed to take one of the occasional church services I do voluntarily around the circuit where I was a Methodist minister till my latest major M.E. relapse. Had a wonderful hour, leading worship, kids' time & holy communion with around 100 in the congregation. The stewards and folks who help with PowerPoint, etc were so helpful, bless em all. They carried me in little unseen ways that helped me achieve playing my part as I was called to do long ago. As you can guess, I'd had to rest up and prepare for weeks prior to this. I haven't been up to functioning much since then till the next big energy "ask".

So I didn't get to my local church yesterday, but my mum did. She was staying the weekend to help me with shopping, tidying and even "strip washing" as I wait for my landlords and their contractors to get their act together to mend my boiler so I have hot water again after almost a month! I joke that unlike my last boiler fail, when the landlords/boiler contractors left me without heat for six weeks, this time I'm dreaming of having a shower before Easter! Wheeeeee!

After the service, a lady took my mum aside to tell her how she had read about a young lass in the paper who had been "cured" of chronic fatigue. My mum gave her the full lowdown on the realities of neurological myalgic encephalomyelitis. She explained how CFS has, since 1988, become the floppy expandable umbrella diagnosis for all diseases that entail some degree of fatigue. Mum explained in a straightforward way how many of these "cures" and "treatments" appear to work because they are actually applied to fatigue possibly caused by simpler things with a psychological root, or post viral states that self-correct over time. She really told it like it is. Told it plainly, but with all her usual courtesy and wisdom. She explained about my raising money for biomedical research through ""Invest in M.E." and the "Let's Do it for M.E." campaign. She challenged some of this lady's misconceptions. She even mentioned the heartbreaking video about severe M.E. "Voices from the Shadows" and even had this lady interested in seeing it. Minor result!

Drip by drip. Inch by inch. Hope against hope. We keep chipping away at neurological M.E. awareness and education. I've now bought an extra copy of Voices from the Shadows to give to my GP & practice nurse, who are open to learning, but tied by the system that bows to the anti-wisdom of CBT & GET alone. I may start carrying a spare copy in my handbag whenever I'm well enough to show my face outside, in case someone more influential comes across my path who may be able to spread the light into more dark and ignorant corners!

Today I was so sad to read via a link on the Sheffield M.E. Sufferers/Support for M.E. Group on Facebook about Lois Owen, yet another person to die from M.E.

Lois's tragic but ultimately inspiring story is told  in This is Derbyshire: Tragic tale of woman with chronic fatigue syndrome 'too tired' to eat Tragic because of the attitude of the medical profession to patients with an illness they seem incapable of handling, and unwilling to keep abreast of the most basic up-to-date knowledge of the needs of patients whose every bodily system is affected and wrecked by M.E. Inspiring, because of Lois herself and her compassionate creativity made available to others, and the way her whole attitude gives the lie to outmoded ideas of M.E. as "tiredness" or "malingering."

Lois died of M.E. aged 34, after a life filled with positivity,  talent, enterprise and creativity. She was a university graduate who set up a charity called "Therapeutic Arts" offering free classes in drama, poetry, painting, music and sculpture. She even wrote a book, one of several she was planning, in a time of remission to help others who suffer chronic illness to make the most of what strength they have, as she did. What a legacy left by a young woman whose life was ended, though never defined by M.E., bringing help and hope to others! Her loving family made sure the book was published to reach others who live with M.E. and other chronic illnesses. Her book "Bed Without Boundaries" is available from the 25% M.E. Support Group here.

Her immediate cause of death was a chest infection which her body could no longer fight off after Lois lost a great deal of weight from being too exhausted to eat. Many of us know that feeling only too well. Using all your strength to cook a simple meal, then having no energy left to eat it! All the more so when bedridden, too poorly to rise and do any such tasks. Or that pernicious exhausting toxic nausea that makes eating and appetite such a struggle. Overwhelmingly frustrating and painful to read how at her inquest, her problems seem to have been linked to anorexia.

Lois had, like other PWME such as Sophia Mirza, been statemented as mentally ill in the past. Yet every symptom she had, and the non-treatment by medical professionals who claim they felt "powerless," I and so many others can relate to entirely. The problem is compounded by the fact that since 1988 many illnesses which exhibit "fatigue" as a symptom have been lumped together as "chronic fatigue", whether or not they are also more specifically characterised by the neurological, autoimmune, cardiovascular, autonomic symptoms that are essential to the ICC definition of M.E., the multi-systemic toxic cocktail of disability that has floored us. As I commented in the Sheffield support group today:

"I can also say that almost all Lois's symptoms ring a bell with me. Often, even now, the feeling of debilitating nauseating exhaustion that accompanies my neurological symptoms makes eating a real challenge. If I can prepare something, many times that uses all my strength & there's little or none left for eating. At no stage have I had anorexia but at times I am too weak to eat. At one stage of my illness I put on weight through having to give up long walks and cycling everywhere as I had done previously. At another stage I lost 6 stone and could eat very little. None of this was down to any problem attitudes to food, but the effects of M.E. nausea & weakness in combination with type 1 diabetes where insulin has to balance with carb intake even on worst M.E. days! As for "voices" - when I was in an M.E. crash with glands so swollen & throat so sore I could barely swallow, plus feverish pain all over, neurological hypersensitivities etc I sometimes felt I was almost hallucinating and even listening to music, familiar vocal/instrumental tracks would seem to play slightly out of time with each other. After months of disturbed sleep & pain with no answers, even as an extremely positive person, I woke one morning seriously considering banging my head on the wall to try to block the pain, or throwing myself out of the window. I didn't. But only because I could not imagine even more distress and discomfort, & hadn't the co-ordination or strength to mount the sill."

Mental stress comes only as a result of the neurological damage and AFTER the illness has left our previously vigorous, joyful, busy, adventurous and forward-focused lives and dreams all but shattered.

I ask you: if Lois's doctors felt so "powerless" to treat her with the sensitivity and expertise necessary, why on earth did they not themselves, as caring GPs and "specialists" join the fight to press for biomedical research? Why did they not dig deep to ensure this would never happen to another of their patients in the future? If they refuse to change their mindsets, how long before someone in the same position as Lois's family, or Sophia's, or Lynn Gilderdale's, calls for a charge of "corporate manslaughter" against a medical, political hierarchy that stubbornly refuses to press for biomedical research and instead mutters "all in the mind" for their own vested interests and monetary ends?

But it's Lois's attitude of hope that's inspiring me today, to go on trying to be a cog in the wheel of  progress in M.E. research and awareness, not a stumbling block on the way. We can all do together, bit by bit, what we could never achieve alone. Sometimes even when we can do nothing at all, we find others, like my mum, are doing their bit too, on our behalf, to enlighten those who are still singing from a different hymn sheet!