making muscle wasting history

All my troubles started one Saturday evening. As per normal I came off my ventilator after 3/4 hrs on it. In total I was having 14 hrs a day, 10hrs at night, 4 in the day. After mam took my mask off it was time for my last meal at around 10:30.
I preceded to eat my pureed food and half way through I found it almost impossible to swallow. It had become a concious effort to swallow, I felt like my whole breathing muscles were failing me. My anxiety started to come thick and fast, I was saying "oh no! whats going on!" I was getting so frightened.

The last time I felt this bad my heart problems were diagnosed and I thought I was knocking on deaths door. Straight away I had to go on my ventilator, but it was offering scant relief, i'm sure I could feel my heart pounding and skipping beats. This continued for 3 more days culminating in a terror filled overnight sleep with shooting arm pain and an ache under my left arm, I thought a heart attack was imminent. Mam kept an overnight vigil until I calmed down. Her hugs really calmed me down

The next day the cardiac nurse drops round and doesnt really detect any major heart anomalies. My current cardiomyopathy drugs appear to work fine. She did notice how anxious I was and said that could be triggering your heart feelings.
I had a hospital clinic on a wednesday so went to that feeling frightened and on my vent, my use had gone up to 18/19 hours a day, which remains ever present today. After a raft of heart checks and a 24hr trace it returned back no adverse heart anomalies.

Seeing that it wasn't my heart causing problems just reacting to my anxiety as an after effect I seemed to calm. Everytime my breathing feels like its giving out, my heart races and I get slightly panicky. To help me calm down my mam would rub my back or arm.
The giving out of the breathing feels as if my body is failing. I breathe out, via mask or not and it feels like all my breath has gone, and i'm scrambling to get the next breath, I feel like im drowning as my lungs burn to breathe. I force myself, will myself to gasp or wait the agonizing 2 seconds until the vent kicks in. My heart hates this and I feel the fast beat, its an anxious time. Every day I get periods of gasping and anxious feelings maybe lasting an hour or two, right up to nearly all day.
Sometimes just playing a FB game will set me off, even moving my mouse may bring on worse periods of breathlessness. I have to stop and do nothing at those times forcing myself just to read.

Some days I just think this is it, I might not last very much longer. After some willing and praying I get through those periods. The everyday nature of this gets me down, theres no relief anywhere. "ignore it!" my mind says but my lungs ache for air.

I can just about tolerate gaps of two hours inbetween times on the ventilator. That takes me up to now, no idea what is causing this. I'm having to assume its DMD getting yet more worse. I dunno how I do it but I fight the anxiety and manage to keep the fear down. I need to do this or it would be a frightening nightmare permanently. Somehow I've got to get used to this everyday. Thank God I have my art skills to keep me occupyed.

Theres an insight into my current day.