I made a bit of a pact with my friend Sue who writes Diary of a benefit scrounger that we would make sure to write regular 'how I am' updates. Typically for two spoonie scrounger types we've either not had time or not felt well enough when we have had time to do a very good job of it. So this is me making up for it. Sorta. I'd go and get a cuppa if I were you and come back once I've finished rambling, it's awful dull.
I went for a deathwalk today. Having had to be rescued by half the neighbourhood recently my friends have expressed concern about my deathwalking alone. So, typically I ignored the advice, went out on my own anyway and got stuck. Having friends in all sorts of places meant that Roland was able to call up another friend who's a paramedic to come and collect me, which all sounded really easy. Except some poor child had the audacity to need an actual paramedic at the same time I needed a lift home so Roland had to come and get me himself. But that was last week - I think. Today I opted for the RNLI option when I got stuck half way through my deathwalk and sat in the lifeboat station with a drink of water until I could make it back home. Although...now I'm writing all this I can see my friend's points. Sort of.
But I am still fine. Or so I keep saying. There's not alot else to be said really. It's just the way it goes for those of us who live with chronic illness or disability and what might seem extreme to you is routine to us. At the moment being so wobbly I look like I'm having a seizure is common place and because my muscle tone is so poor I slump over even more than usual when I sit. Lovely Carer hasn't mentioned anything about weight loss, which is understandable as she still has PTSD from the last time I ended up weighing all of 30 kilos, but I can tell she's concerned as every time she's here she insists on putting food infront of me.
I'm really dislocatey too. Most of my dislocations reduce themselves almost immediately, but come out of the socket too far to be classed as true subluxes. They all hurt, but only the ones where I can feel vertebrae sliding about in my upper neck really scare me. After one neighbour rescue I had to reduce both shoulders, both hips, both knees and assorted other ribs and spiney bits, something I do more times a day than I consciously register so I forget how it impacts on others and was surprised by how my neighbour's eyes filled with tears at the noise.
I'm also more forgetful than usual, so if there was supposed to be a point to this post I'm really sorry but I've forgotten what it might be...