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My journey of 3 years and still no end

A post on the pain of #Scoliosis reminded me of my 3 year journey of non-#Diagnosis where it seems scolosis has played a part.
Now I am quite #Disabled with many different items, but I'm just focusing in on May 2019 and its aftermath.
An aftermath that is not yet completed.
In May 2019, amidst the height of covid, I was taken to A&E with what turned out to be a #pulmonary #embolism , causing my right heart ventricle to be swollen and my lungs damaged.
On blood thinners I joined the pulmonary #Hypertension and the lung clinics. Investigations of various complexity and risk ensued and the thinner is now for life as they could find no reason why I throw blood clots.
Lung function tests showed I had little breath and wheezed and panted and coughed.
But no reason could be found.
After 2 years my heart and lungs seem to have stabilised. No further inflammation or increase in damage. But still I have no breath.
At this point a consultant mentioned how low my #Oxygen levels were when I was flat in a scan and suggested I go to a sleep clinic to see if I have sleep #apnea .
I was duly sent for test 1. When considering the results, the doctor mentioned that my scoliosis was no doubt impacting my ability to breath.
I thought how interesting, especially as it seemed to be on the move, judging how tight and painful my muscles were and how my shoulder dipped even further.
Just fyi, adult scoliosis has no treatment. No steel corset. No operation. Just bear with it. And see an osteopath or sports masseur.
But still, my oxygen levels overnight are too low.
And now I am back at the lung clinic. To see if I have asthma. I am given increasing levels of a drug for over an hour to stress my airways and bring on asthma. Mine it seems is very mild. This is not the answer.
I have #Hypoxia but how is it caused?
No answer is yet forthcoming. 3 years on and still more clinics and yet more tests.
I admit to being frustrated and #depressed as my GP rightly says,by my health or lack of it. I wake up in the night again and again. My muscles cramp. I can't get comfortable. And get up in the morning slowly with no energy for the day. And no oxygen in my blood it seems!


Sleep, part of your depression or coping mechanism. #apnea #SleepApnea #Bipolar

When I was a young man there were times when things were hard. Woopdedo. Not unlike anyone else in history or at least a significant amount of people.
There were times when I had to decide whether to eat or heat. I had an old fashioned bed sit, in the middle of a city, here in the UK. I was between jobs and at the time jobs seemed to be quite hard to find. Everything seemed to be either experience or qualifications that I didn’t have....again I guess many, many, people around the world must find themselves. I’m guessing this is one of the reasons find themselves homeless. I didn’t drink or take drugs....I just paid my rent.
As well as rent you had to put money in a meter for your electric.
What I didn’t know was that there was social welfare help available. I guess I fell through the cracks of information. Sometimes I could afford to get a bag of potatoes and that would last a week. I’d cut them into squares, boil them a bit then fry them a little to make mini roasties. But when I couldn’t afford these or trying to make them last, I would sleep. Sleep most of the day and all of the night for weeks at an end.

I think with the experience I have now, this might have been the beginning of, or might have been an indicator of depression. Well, at least my depression. Of course who wouldn’t be depressed at a situation like that. Makes you appreciate the smaller things in life.

And then the converse.....not sleeping because my head won’t stop. What the absolute fook.

This doesn’t happen mixed up. Well not for me anyway. I go through periods of sleep deprivation then ok for a while....then either that again or sleep all the time. It doesn’t rotate and you never know what’s coming but it’s a massive indicator that something is on the way.