ME Awareness week:
My ME lockdown with the invisible “terrible triplets”
I have been living in ME lockdown on my own, yet it doesn’t feel as though I am alone.
My lockdown experience started long before Covid-19 appeared on the scene as I have been ill for many years, often unable to leave the house for weeks or months at a time. This new lockdown has just added another layer of complexity to my life.
The will to get better is there and I desperately want to live a productive, peaceful life, but my brain and body don’t listen to me, or each other, and won’t cooperate. They’re like troublesome children who argue and fight no matter what I want, or what is happening in the outside world.
My body
My body misbehaves in so many ways, some of them most unexpected – painful muscles and joints, shooting pains, minimal energy reserves, post activity delayed reaction, haywire temperature regulation, sensitivity to prescription meds. I could go on!
You’ve heard of ‘brain freeze’ after eating ice cream? I get ‘body and brain freeze’ when overstretched. All of a sudden my temperature plummets, I go cold all over and I am in agony. The sun has been shining outside during lockdown. People are gardening, sunbathing and having barbecues in their back gardens, (or risking illegal trips to the beaches and parks!). I remain indoors fully dressed, plus dressing gown, wrapped in a thermal blanket, shivering in bed with the electric blanket on, sometimes for hours or days, attacks coming back to back sometimes!
Then just as suddenly heat surges take me over and trigger a polar opposite experience. I have days where I am super sensitive to light and sound and need to cocoon myself in a quiet darkened room until my tolerance levels increase. Some days I get eye distortion, even double vision, and cannot see clearly. The harder I try, the more difficult it becomes and again some downtime is needed.
My brain
My brain really lets me down frequently. Some years ago I earned the equivalent of 2 degrees but now my brain rarely works well and frustration reigns. I find it hard to follow, absorb, process and retain information. The concentration required really hurts. Sometimes the more active my body is the more impaired my brain functions become, as though it is being cooked in a pressure cooker. My brain processing power ceases but the pressure & pain continue and all the things I once learned to do, I rarely can do.
Pronouncing or spelling familiar words can be difficult. Although I once excelled at maths without using a calculator, I now find basic calculations near impossible, even with one. My brain reacts as though I’ve become dyslexic with both words & numbers alike, as I struggle to make sense of what I see written down or even what I say.
Learning to shop in a different way during lockdown has really hurt my brain. I was unable to get a supermarket delivery slot but eventually discovered a local teacher who was volunteering to shop for those of us who are shielding. She turned up as planned to get my shopping list. Momentarily forgetting my recalcitrant brain I gratefully gave her a list of 6 items (2 pate, bread, cereal, milk, chicken). She looked puzzled, but I assured her that was all I needed. Once she had brought the shopping and I had put it away, I looked around the kitchen in horror, wondering what I was going to eat for the next week! I have been too embarrassed to contact her again, yet.
An acquaintance who lives some distance away offered to collect shopping for me. He helped me find a supermarket with a click & collect slot & spent at least 4 hours over a few days making and amending an order for me, as I tried to work out the most important 80 items I needed. Then he drove nearly 100 miles round trip to collect and deliver it to me. I was very touched and grateful and gave him a cheque. I was mortified when he got home and noticed it was unsigned. Another bad brain moment! Fortunately he had a sense of humour.
Cognitive difficulties are not a sign of low intelligence, a behavioural problem or a learning disability, but they really can make you feel daft.
My belly
My bellyAnd then there’s my tummy. It is such a problem it also has a life of its own – pain, food intolerances, bloating, diarrhoea etc. Most of my stories about this family delinquent are too unpleasant to relate! I got so tired of watching doctors nodding sagely and unmoved when I mentioned the bloating that I took a selfie so they could compare it to the person in front of them. That got their attention! As you can imagine I have been offered seats to sit my weary pregnant body down on (though I was not of an age where pregnancy was possible) – a bittersweet moment to be considered so young.
I was pleased to receive 2 food boxes recently. Although I communicated my dietary restrictions beforehand they were misinterpreted, maybe unable to accommodate. I found half the items were unsuitable, which made me then feel ungrateful, and guilty at depriving someone else, because I couldn’t return them.
The terrible triplets
The terrible triplets. 24 hours a day, 365 days a year these triplets have minds of their own. My ME lockdown is not imposed from outside, by governments or health services, but by my own discontented and argumentative ‘family’. I call them the ‘3 Bs’ and not just because of the alliteration!
The hardest lesson in my life is to learn to accept my new self and life difficulties with humility and kindness, forgiving myself for my lack of previous abilities. I have to postpone activities that use physical or cognitive functions knowing there will be moments later when I get to catch up on critical life tasks. And there will be the odd momentary flash of the old me, which is still within me and can bring me joy, and then sadness as my 
abilities retreat again.
It is a real relief when the triplets calm down a bit and I can focus on something useful, productive, even enjoyable, when I can inhale a breath of sanity before chaos resumes. What impact does this have on my mental health? I sometimes think I am going doolally, but mostly I just try to remember to acknowledge that anxiety and depression are normal side effects to such a chronic health condition, and wait for them to pass.
People only see me occasionally, on better days, not when I am behind closed doors. It is difficult to communicate to people the difficulties I deal with on a minute to minute basis. I don’t talk about the invisible triplets obviously. That might lead me up the path to the asylum on the hill, though I’d happily go if I could leave the terrible triplets behind!
8 weeks into Covid-19 lockdown.
12 years 5 months into my ME lockdown.
PF, Wales
PS Thanks to my ‘editor’ who made sense of my incoherent ramblings and scribbles!
I didn’t want a fixed route or time schedule. I chose 5 places to pass through as a guide, including Llandovery, Devils Bridge, Cadair Idris and Mt Snowdon. I used OS maps and just planned my routes daily as I went. If I got to a split in the path I’d choose the one that looked most interesting!
The most interesting contact was from a lady in the US who had ME. She asked if I was going through Llanddewi Brefi on my route. I replied no. I was going about 15 miles east of there. She said “that’s a shame, my grandmother is buried there and I’d like a photo of her grave.” I replied “I’m going there now, as this is a walk for ME”
I had promised friends that I would finish by going into the sea when I reached my destination. I had arranged to meet a press photographer and friends who had come to take me home at 2 pm. It had gone cold and I had been wearing a fleece and waterproofs on the last part of the journey. I stripped down to my charity T shirt (but kept the thermal top on underneath) and ran into the sea and threw myself under.
I tried 
It was pointed out to me that we absorb about 60% of the chemicals we rub into our skins which is even more worrying when you think that what’s in hair dyes, face creams etc. can easily be absorbed into the brain, damaging our nervous system. There are lots of good alternatives on the market today – usually found in health food shops or online. For people in good health these substances may not cause a big problem, but with ME you have little energy to support your detoxing organs like liver and kidneys, and the substances can build up like poisons in your body. Your liver is a major filter and it just gets blocked.
Every day requires time spent lying down, experiencing pain in my muscles and joints and sensitivity to noise, smells and light.
In November I was rushed into hospital with what was diagnosed as a mini stroke. I was kept in for nearly a month undergoing endless tests, a lumbar puncture and multiple scans. In the end by a process of elimination they diagnosed ME. It was useful having an early diagnosis but they wanted to keep me in hospital because I was so weak. In the end I had to beg to go home. Hospitals are noisy and being in a stroke ward the lights were on all night and there was noise as the other patients were being attended. The lights hurt my eyes and I was very sensitive to sound.
My daughter has had ME for the last 27 years, since she was 11 years old when she suffered a bad attack of glandular fever. She was a few weeks into a public school, where she had gained a place on merit. She was extremely bright and enthusiastic, playing cello in a junior orchestra and she excelled at sport.
Staying at home in self isolation is nothing new for her. She has her bedroom blind closed most of the time. Her body clock is reversed and she is asleep during the day, despite several attempts to change this. She has pain in her muscles, is light and sound sensitive, and suffers with brain-fog and extreme unnatural exhaustion. She is only just able to go to the bathroom herself. She is an immensely independent and private person, and sometimes it is a struggle. Often a conversation is too much for her and she shuns any company most of the time.
