Introduction- and Journey

[Sleeprider]

Doctor sounds like a team player Glad all went well and everything has become comfortable and natural for you. It's always a journey, and yours should be helpful to anyone that reads it. Thanks.

[SarcasticDave94]

Congrats on the doc visit. Keep at the therapy.

[Knitman]

Hello Melodyknit-the first thing I would like to know is if you are a knitter. I am. Have knitted and designed most of my life, hand and machine.

You have just given me another diagnosis! PLMD. I had to look it up. 

My poor husband had to spend a year on the settee because of my attacks upon him. When we first got together, 40 years ago(we got married once it was legal but as far as we are concerned we have been married 40 years, not 8), he was furious with me one morning because I swore at him and hit him. I had no recollection.

This was before I knew I had CPTSD. It's in my clinical notes that no one is to stand too close or touch me in my sleep but quietly try and arouse me. Usually all it takes is them standing there and I awake, still startled but they are out of range of my fists. 

I had periods of waking John and telling him we had to leave or we would miss the train back to England or we needed to check out now because we had to be checked out by midday. All this from our bed at home.

Although I still have CPTSD and always will, it is not like that anymore, though do not come up behind me and say Hi cos I jump and it hurts me badly. I am a wheelchair user out of doors and I use furniture and canes to hang onto indoors.

John says since I have been on CPAP I no longer shout or talk in my sleep or thrash about. He often, now, has to check that I am still alive!

Even though my CPAP therapy is not yet settled, it has been one of the best things to happen for me. I am no longer tired all the time. No longer dropping off willy nilly. I am back to swimming at least 3x weekly, 1 mile. I love the water as I am not disabled in it. 

Now I sleep perfectly still. I don't move. I don't kick. The only thing I do is get up for the loo.

Good luck. You much to look forward to that will amaze you and make your life so much better.

[jaswilliams]

Hopefully you trips to the loo will reduce as well that is often a benefit of cpap therapy

[Knitman]

Hopefully you trips to the loo will reduce as well that is often a benefit of cpap therapy

That is true. I only go once a night now, sometimes not at all, but at my age I doubt it will ever be no trips most of the time. I have to use a potty as I have M. syncope, a condition that makes me faint when getting to urinate. As I start, I faint. Hence 5 ICU visits last year. A few times I have just fallen back on my bed. I always seem to have finished, fortunately! I cannot recall what the M. stands for. 

Because of brain damage though, I am very prone to falling, mostly backwards, too.  The fainting when peeing at night is a known condition. Although it is in my notes, I just found out, no one bothered to tell me. Same with biventricular failure. I found out upon leaving the hospital and reading my discharge papers. No one is perfect and perhaps they did tell me and I just did not twig. I was told the bottom left ventricle of my heart was damaged and didn't pump properly. I also have scarring from a heart attack that happened when I was somewhere else because I don't recall having one. Oh, did you know there is such a thing as a silent heart attack? Anyway, back to what I read. I was not a happy bunny when I read online what it meant. Congestive Heart Failure is now in my records. Those actual words. I guess that is what the lovely doc, she was, was telling me with her description of what was wrong. I just would have preferred to know the proper words. The more I know and understand the better I feel even if it is scary. 

I just take each day as it comes and am grateful each day that I am still here enjoying my life. Life has been very very much worse and I never dreamed I'd really get to this. I also never forget how terrible the lives of others can be. I am not in a war zone, living under a dictatorship, no longer living in a country where being me was a crime, and not living in one where I would be beheaded for being me. I am not a 5yr old with cancer or no food in my belly. There is much to be grateful for but when life is very hard and one has much pain, emotional or physical, it can be hard to be grateful for my blessings.

As for CPAP therapy, it doesn't bother me one bit. It has improved my life so much. It doesn't bother me having to wear a mask. Better than a colostomy. 

Rambling again.

kindest regards