Getting out of my comfort zone …
I call it ‘my trunk’ because it made the acceptance process easier at that time.
This blog takes me out of my comfort zone, because I still find it difficult to share this with the outside world…
How it all began.
In February 1991, I caught a cold, I thought.
Because of my Nemaline Myopathy, my breathing muscles are also affected and when I cough, I cannot get the mucus up. So the pain in my diaphragm was definitely proof that something was wrong.
After a week of struggling, I went to the doctor (I am not a fan of doctors 😉 ) and it turned out that I had a severe pneumonia.
I was put under house arrest and given heavy medication so that it would be under control.
The day after, however, I took my practical driving test, which I successfully passed… Partly due to the feeling of being drugged I think 🙂 But a few days later it went wrong.
I woke up in a delirious state during the night and was speedily admitted to the emergency room. At first they thought I was drunk, but when someone called out that I was no longer breathing, they very quickly changed their minds.
19h later, in the intensive care unit, I came out of my coma with a breathing tube in my throat. I will never forget what a frightening feeling this was. Waking up in a totally strange environment, no sense of time …
But I was taken care of very well by the nursing staff; Frits, for example, was very sympathetic towards me from the very beginning.
A week and a half later I was allowed to move to the lung department. Between the gurgling old men and women …
(‘I’ve been traumatised by it because now when I hear someone coughing ‘dirty’, I got shivers. I really can’t stand it).
The diagnosis and solution –> BiPAP!
Via via, I got to the UCL university hospital in Woluwe where they started with a sleep test. It turned out that I apparently only have 20% lung volume and in a relaxed state I don’t breathe…
That’s why I’ve been tired all the time for years, and why I get such a terrible headache every time I open my eyes in the morning!
My professor-pneumologist (urgently) suggested that I start sleeping with a BiPAP device. There was no other option, but ohhhh I cried. It was terrible, even worse than giving in to my wheelchair at the time.
The whole week that I was hospitalised for this, the professor sat beside me at my bed every evening. He talked to me for hours, comforted me and showed his compassion and understanding.
Acceptance and coping.
It was not until years later, during my cruise to the Caribbean, that I got outside with my BiPAP for the first time. Nobody knew me there anyway 🙂 . And because I also wanted to enjoy/snooze in the sun for hours, I put my pride and ego aside and installed myself on the sun deck with my ‘trunk’ under my arm. People looked, for a moment, most glanced a moment and walked on. Was it really that simple? 🙂
Since then, it has become easier and easier for me to take ‘my trunk’ with me and use it in practice. I cannot lie down at ease for more than a quarter of an hour without getting a headache. So breathing is not an automatism for me and even ‘work’. If I concentrate too long on reading a book, for example, I feel after a while that I need to take a deep breath 🙂 .
The feeling of hatred (a strong word in the meantime) is there because, for example, I can never stay over somewhere unexpected. A party or something that takes longer than expected …
Or for the person who sleeps next to me, this is sometimes a challenge. It makes a light bellows noise and it calms some people down, but keeps others awake.
Towards a partner, this is also anything but sexy, because cuddling or kissing … a no go … 🙁
On the other hand, at times when I am so exhausted that even breathing is too much, I am glad to have it. Then it feels like a luxury that I don’t have to make any effort to breathe myself. Even when I feel that I am getting sick, my ‘trunk’ is a blessing. It helps me breathe through when I feel that my own strength is not sufficient.
Travelling with my ‘trunk’.
It does take some preparation because this device has to be considered as hand luggage. It has a rechargeable battery and you have to inform the airline. A medical certificate proving that I need this is always in my airline documents!
With a spare device, a roll of Duck Tape (always comes in handy! 😉 ) and a label ‘medical equipment’ attached to the bag, my ‘trunk’ now travels with me everywhere and even became my most beloved travel buddy! 😉