I’m feeling very lucky at the moment. I may have managed to increase my baseline of daily activity to three hours a day! Not quite every day though, but five out of seven isn’t bad.
‘What about the other twenty one hours each day?’ I hear you ask. Well, they’re still spent laid flat on or in my bed.
The funny thing is that I’m feeling rather guilty. Does this mean that I’ve moved from the ‘Moderate/ Severe ‘ group to just ‘moderate’ in the world of ME sufferers?
There’s still a vast group who are not only spending twenty four hours a day in bed, but also needing specialist personal care. Help with simple tasks such as eating and drinking. Many of them are at home, some trying to manage alone as the disturbance of anyone else in their home can trigger seizures. Most of the Severe sufferers have been ill for a very long time, twenty or more years. Some of them had moderate or even mild symptoms for some of that time.
The question is ‘am I recovering?’ or is this just a ‘good phase’?
This is why pacing is so important. There are some thoughts that each time a ME sufferer ‘crashes’ from overdoing things, they cause permanent damage. A ‘Spect Scan’ can show brain damage in ME sufferers and even determine which parts of the brain are permanently, or temporarily damaged. Unfortunately, despite the Nightingale research Institute providing the government with a recommendation of this amongst other diagnostic tests,here in the UK, the ‘NICE’ guidelines still recommend ‘no tests’, as they believe that ME or ‘CFS’ as it’s called here, is treated under psychiatrists offering Cognitive behaviour therapy (CBT) and graded exercise therapy (GET).
So I continue on, not knowing if I’m recovering or deteriorating.
My last crash was this time last year when I experienced the worst symptoms of this five year long episode. Getting the balance between optimism & realism is a tough exercise.
Privately taken tests have shown that I have mitochondria & adrenal failure. This means that my batteries are flat! Basically, after much rest and nourishment my body has a little energy, once I’ve used the energy the battery is flat again. Healthy people run like cars, recharging their batteries as they go about their daily business.
I’ve learnt over the years what uses up my energy and at what rate. Pottering in my garden uses little energy, having an argument empties my reserves instantly. Having a conversation with a visitor is moderate, I can extend the time by having my eyes shut. (Apparently there are a higher concentration of mitochondria in the eyes than anywhere else in the body)
If I’m in a room with several people talking all at once, and background music, I’m in hell. I can actually feel all the energy draining out of me.
I was recently thinking about my busy life, pre illness. What I would have thought if I was told that for the next five years you can live your life on only two hours a day.
How would you react? If tomorrow your life changed, how would you spend your time?
There’s a lot of debates currently about welfare payments and the disabled. I have care to help prepare my meals and wash my hair for me. By having this help I can actually have a reasonable quality of life. I used to feel very guilty if I managed to bake some flapjacks when everything else had been done for me by my carers or family. If I had no help then all my energy would be used on survival. Is that right and fair? Life and living have a lot of grey areas and my own condition has taught me to be far more compassionate and less judgemental of other people’s lives. My kids are reminded that the person who just leapt out of their car in the disabled space, may have a terminal illness, they could be dead next month, or maybe like me, they’re just having a ‘good’ few hours.
Well, with careful management, I’ve been able to have visitors, bake flapjacks, garden, keep Bees ( with help) and now write a little. The key has been to focus on what I can do and not what I’d like to do. Sometimes I can do what I’d like!
Life isn’t so bad.