2022

Another Christmas is coming to an end. I’ve binged-watched a series called The Serpent (8 episodes), washed my hair, prepped next year’s diary and enjoyed this year’s hour of quarrels and death in Eastenders. Not bad for someone like me, now with one injured wrist and a damaged sacrum (from a fall). I’m feeling serene, so happy with my home and ipad. And a working boiler.

Even when life is a minefield, as mine has been since April 2020, the one thing to keep you going are a few friends who see the good in you, and the knowledge that you did the right thing, at least most of the time. That you rarely lied (ok, I might have told a few people that they looked lovely in their new outfit when they didn’t), but for example, I got up in the middle of the night when mum was wet and changed her and the bedding, leaving her comfy until the day carer came. Based on our eventful night, I joked that she could tell people how cruel I was when they came to investigate me, that seeming totally unrealistic. I was there for her when she was anxious, or wandering around looking for something though she had forgotten what. Knowing she had dementia, I contacted the Admiral nurses, and they taught me what to do, ie never get angry. I was dealing with something at night about three or four times a week. She was well looked after until the last three weeks. I alerted the right people, but they had been brainwashed, so left mum in pain. And without the fluids that might have kept her more comfortable during the final days. I could have afforded a private nurse to deal with drips. Even the hospice let her down. But I had tried.

The carer who heard me mention the word cruelty didn’t respect our privacy and passed it on, minus context and humour (this was in the April before mum died), and it obviously gave someone with a more wicked mind than mine, an idea. I am so pleased still that I retained my dignity, ie no revenge, coped with the harassment and gaslighting, and now a life-limiting disease.

I was and am still being tested and have had just about everything thrown at me. But it is now Boxing day and I just feel happy. Not having tooth ache helps.

I have to find a new nhs doctor, a new neurologist and buy an electric wheelchair. It’s surprised me how little info there is online about the last stage of illnesses like leukodystrophy and MND. Which wheelchair will suit me. Can’t keep buying different ones. My private GP is kind and treats me like a normal human being. The NHS one won’t even arrange a nurse to give me a flu jab. I am getting bolshy as I want better than that. I should have been bolshy two years earlier but it’s not me. Not unless under severe stress.

I might have studied psychology but in my view, the most important character trait for a human is kindness. And you don’t need to study psychology or philosophy to see that. I leave behind a huge legacy of studies, the basis of which have underpinned such things as pacing. Yes, I never received any credit for that but not citing sources is no longer thought a requirement in modern science. (We used to credit people who developed something new in gynaecology but it’s not common in the world of ME or long covid.) And so pacing remains largely perceived as a lay construct. Despite the qualifications of the people who defined it and evaluated it. All four of us are rarely mentioned though I saw in a recent review that they had taken my definition of pacing. And they had a choice. What matters is that patients benefit.

That people no longer give credit to those responsible for innovation etc says a lot about modern humanity. It’s patchy, as they say. In two years, America may get a Trump.2 and that won’t surprise me. Lies are accepted when they should be challenged, but I can’t do anything except deal with the ones about me. In the past I would have written to a paper, but those days are over. Now I treat myself to a cup of coffee or some chips. And my heart smiles. I did ok. Only God may know, but I leave the world in a better state as regards certain diseases than I found it. PMS, PND, ME etc. And I thank my dad for supporting me when the critics dismissed these diseases. And shot the messenger. Thank you Dad. You helped thousands of people with horrible illnesses, by encouraging me to keep fighting.

To my readers, try and be kind during these challenging times. And don’t believe everything people tell you. Gaslighting is on the increase. It is a cancer of the soul. Trust experts (cf Brexit). Don’t let people dismiss warnings and lies so easily. Stand up against those who are unkind especially to close friends and family. Don’t encourage the bullies in this world. Your wellbeing depends on it.