For at least 2 years I tried my hardest to build up my strength and get myself walking properly,I’d wear my splints most every day (although I’ll admit not as much as I should have)and attend physio sessions twice weekly. But nothing seemed to work I went from using a manual wheelchair only when traveling long distances,to using it almost everywhere. The doctors still had no idea what was happening to me. It was frustrating working so hard only to feel myself growing weaker.
It was around this time that I went into hospital for a sleep study. My parents had noticed me making weird noises whilst asleep. I was told I had sleep apnea and given a breathing machine to use at night. I hated using it and would take it off during the early hours of the morning. One night I took it off and after trying unsuccessfully to go back to sleep I decided to put it back on.From then on I slept with it on all night.
A short while after being given my breathing machine I started struggling during my physio sessions. One of the excercises I had to do involved laying on my front. I’d been doing this for two years without any problems,but I suddenly started feeling extremely breathless it was decided I should stop doing this particular excercise. A few months later I stopped attending physio as my breathing had started to become an issue.
Fast forward another two years and I had been given am electric wheelchair to use whilst outside. I was still managaing to walk a few steps at home,but that was about it. I’d also started to use my breathing machine during the day for a couple of hours to give me a break. The doctors had no inclination as to what was happening to me. Only that it was definititely a progressive condition.
In 2011 at one of my many appointments I finally given a diagnosis! The doctor told me he had been at a talk involving doctors from around the world. I’m not quite sure how,but it ended with him sending my blood of to America to be tested. It came back positive. I have Myofibrillar Myopathy Bag3.
At the time of my diagnosis it was quite a rare condition having been discovered only a year or two before. I was only the sixth person in the world to be diagnosed with it. It should have been a relief to finally be given a name for the condition that had changed my life at first it was,but it being such a newly discovered condition means that there it so much not yet known about it. I have no clue what to expect in the future and that can be scary at times.
And yet at the same time it also gives me hope.
Daniella x x