Fresh Mud

Living with FSH muscular dystrophy. Questions?
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I use a C-PAP ("constant positive airway pressure," a form of non-invasive ventilation) machine at night as I breathe too shallow whilst asleep, resulting in me not taking in enough oxygen and not getting rid of enough carbon dioxide. I wear a mask that's connected to the machine via a rubber tube, and the machine pushes air into my lungs as I breathe in.

I was referred to a respiratory physiology clinic in Birmingham back in October 2012 when a district nurse discovered that I felt drowsy most of the day and had a headache every morning after waking. For me it was something that had built up gradually over a few years and so it had become my "normal" – looking back, it seems crazy that I didn't think to do anything about it, but it's easier to see these things from the outside. The clinic took a blood sample from my ear lobe, tested my blood oxygen and carbon dioxide content, and confirmed that the former was too low and the latter way too high. I was sent home and told that they'd be in touch.

A long six months later, I had an overnight appointment to try out using the C-PAP non-invasive ventilator; I wore it for around 11 hours in total, but only managed 3 hours sleep – the noise of the hospital, the feeling of pressure in my lungs from the machine every time I breathed in, and the anxiety of the whole scenario, made it very difficult to relax. I mentioned to the physiotherapist that I felt the same in the morning and she informed me that "it will take around six weeks to see a change." I took the machine home with me with instructions to wear it at nighttime and any time I felt drowsy during the day.

It took about three months to be able to use the machine all through the night – before that I'd often wake in a panic feeling claustrophobic and, according to my carers, would be shouting for them to take the mask off. Occasionally, I'd not wear it at all in an attempt to be able to sleep normally, but always ended up regretting it when I woke up with a headache.

Fast forward to today and I now cannot physically sleep without the C-PAP machine – if I doze off without wearing the mask, I wake up seconds later gasping for air; it's a horrible feeling that leaves me full of adrenaline. I've gotten used to wearing it at night and can easily relax whilst wearing it, but it is frustrating to think I can never sleep without it.