I haven’t been posting much over the past few weeks and I wanted to write this to explain what’s been going on. In October 2013 the decision was made that I should no longer use stairs, as they were causing too much damage to my hips. I’ve been chronically ill for many years, and my bedroom was my sanctuary. When my OT suggested that I move into the lounge and have a profiling bed (similar to a hospital bed), I was horrified. But I was also suffering massively with my hips, and I was exhausted from the constant dislocations and pain. I figured I’d give it a try, at least until my hips had calmed down a little.
And so, I moved into the lounge. Little did I know, two years later and I’d still be living in the lounge. I’ve previously talked about the fact that I’m an introvert, and so having to spend all of my time in our shared family space was very tough. I adore my family, don’t get me wrong – but I don’t function well if I don’t have time to myself. So I haven’t really been functioning all that well for the past two years. I have M.E/ CFS as well as other chronic illnesses, and so I often have bad bouts of severe fatigue – to the point where I can’t move or speak and all I can do is sleep. My family continually tried to let me sleep when I needed to, but they’re only human and there was only so much they could do. I haven’t had any privacy for the past two years – the only time I’d ever be by myself was when I’d use the tiny downstairs toilet, or late at night when everyone had gone to bed. Plus I was trying to teach myself A2 level Chemistry and English Lit. It was exhausting and draining.
Then on 3rd November 2015, after lots of relentless searching for funds and finally having the most generous donation from a wonderful charity, the adaptation finally began for my very own bedroom and bathroom. Fully accessible. With doors that close. With wheelchair space. We’re now three months into the extension and I should be moving in there in the next couple of weeks. Since the beginning of January I have been back upstairs as the lounge has become uninhabitable now. But we’re nearly there! We are nearly there!
Having my own space will drastically improve my life. I’ll still be ill of course, but I’ll have the time and space to properly care for my body and my mind. I’ll have a desk. I’ll have a shower. I’ll have a toilet that doesn’t have any steps leading down to it, as the one above did. I’ll finally be able to get my life back. I am beyond excited for this next chapter, and I really hope you can be a part of it with me.