Something quite unusual happened yesterday.
When my toes began to feel more icy than usual I consulted the thermometre and suitably impressed, I dragged a heater out and turned it on.
Unheard of for the first day of Summer!
Each day that is cool is a day that’s not hot.
July and August will be plenty warm enough.
It’s a little strange, having a screwy body thermostat because I can often feel flattened by the heat and not long after be shivering with cold.
Or, most of me may be overheated while my feet are ice.
There’s times when most of me is cold but my legs feel as if they are being toasted. But only inside. The skin remains cool.
Nerve damage is a damn nuisance.
Each time I tried to sleep last night, something else conspired against me.
“Too much feeling in the legs”
Blackie likes to sleep with me, preferably right up in my face which is not the best arrangement for me, but I love her to bits, so I tilt my head to an angle which frees my nose. My hand firmly around the tubby tummy prevents said cat from worming her way up.
On a good night, I fall asleep thus.
Bad nights, I am up and down so much, Blackie gets fed up and goes off to sleep elsewhere. Her idea.
So there is that advantage!
Then there’s all the dietary peculiarities, over and above being lactose intolerant and vegetarian and having burning mouth syndrome, a particular delight.
Why am I even writing about all this?
There are others out there with similar complications and frustrations. It is hard to get taken seriously but you are not alone.
Not that I have any very useful advice, except to say that moving constantly as I have done is not helpful.
When you move a lot, you end up constantly searching for new medical providers and new sources of whatever foods suit you, not as simple as one might assume.
Not to mention that the stress of moving is bound to cause a “flare”.
Recently my rheumatologist ordered a blood test that for some reason no-one previously considered necessary.
Since my teens, I have always known there was some spiteful lurgy lurking in my body. Nothing dire. Just something that periodically asserted itself by draining every ounce of energy.
The result of which was that I was considered lazy when in fact I was just exhausted.
Where did I acquire this gem? Not by kissing boys. I was in convent school. Does it matter, anyway?
One other peculiarity is that I have been asked many times, whether I ever had a head injury.
Broken nose, scar tissue on the brain, eyes that don’t rotate properly.
Clearly, if I fell on my head, the injury was not serious.
I can sort of imagine my mum dusting me off and saying: “You’ll do!” She survived the six years of WW2 in London, so a small bump on the head would have seemed trivial.
Or possibly it happened when I was in someone else’s care. I doubt they would have said.
It is actually handy to have medical records.
Should I have made more fuss, years ago and demanded answers? I came from an age and society where making a fuss was not what one did.
Doctors were respected, seldom challenged.
It was clear I was not terminally ill or I should have already been dead, so perhaps it was psychosomatic?
Maybe in fact, everybody else felt just as lousy?
It had occurred to me that it was all a coping mechanism. Maybe I was turning emotional pain into something physical. One therapist said this was a perceptive notion.
In some ways, I’ve had a very strange life. I haven’t enjoyed all of it, but who has?
Compared to most, I have had a very privileged life and I have had some very fortunate experiences to offset those that were less so.
When I was young I used to wonder how I would ever come to terms, as I grew old, with the approaching end of life.
It’s actually very simple. You just get tired.
There is really nothing awful about it.
Whatever animates me will just return to its source.
Witnessing the cycle of :
is so liberating.
People like to think humans are different, more complicated, endowed with superior intelligence.
It is not so.
We are all part of an endless cycle.