The Sjogrens, connective tissue disease has taken the soft tissue from the bottom of the balls of my feet, a few years ago it took the toe pulp which was incredibly painful, & now it's taken the soft tissue I need to walk on. They thought it was athritis in my feet at first but the medics still have no idea how to help or treat it. I have no movement in my toes & can't move my feet to walk up a slope. The only way up is to turn sideways & this is for very low gradients.I used to walk very steep hills on a regular basis, 1 in 4, 1 in 5 as normal. The pain in my feet is horrific & its affect on my ability to get out is even worse. I have a lot of illnesses, diseases, thousands of symptoms, battled them all, but this is devastating.
I have the powerchair but like all of them, it's a heavy bugger, 12 stone, plus ramps to get it in a car, many cars won't take them. It folds down to a cube, some 2-3 foot in size. None of my agency carers can get it in their cars, so my regular shopping outing is looking less & less possible. By Yule it may well be utterly beyond me which would be completely devastating.
I have found that agoraphobia gives me a funny thing when in the powerchair, like I had with my car when I could drive, I panic about it breaking down to the point of becoming neurotic. But its the aspect of perhaps not being able to escape should it break down. The ability to have the access to an escape route is essential to me. It's freedom is great but the limitations are horrible. Only my parents car can take me anywhere, then the smallest of steps is an inpassable mountain, these are ancient market towns, these shops can't realistically be accessible. Grassed areas are fine in good weather, but if it's been raining you're stuck & sink. I hate the way people either completely ignore you in a powerchair or watch you, it's quite freaky. I may be extra aware of that because of the agoraphobia bit but hard to say. Herne recently said something lovely to me when I was out in the wheelchair & feeling ugh about it, I do my best to try remember that. I'm just very sensitive to things at the moment with what happened, still being fucked over by Social Services, my support agency & their 'carers'. My father & I continue fighting. A new PCT decision has decreed that my morphine is, to save my doctors money, to be a different brand each month depending on what's cheapest at the time, plus will be a MIX of brands to be taken at the same time. This contravines NHS & BNF (British National Formulary) guidelines so I'm to fight it because this is extremely detrimental to me & my already shit quality of life. A recent nursing assessment told me I now have visible muscle wastage in both my arms, my new dentist told me last week that my mouth opening has shrunk even more. The future is exceptionally bleak.
Cat Cafe is busy, seven of my own indoors, three ferals trying to move in & other regular feline callers too, thank the gods for them.
Old news to us but not public. A couple of weeks after my last post I began to be unable to cope. I always said that it would take a strong man to be able to be with me, to cope with all my illnesses, disabilities & all that these entail. I had found that man, Herneoakshield, after over 10 years of being on my own. I would never even consider letting anyone into my life because I knew it would be so difficult, but I had always thought of how the other person would be, I hadn't considered myself in this. And then ... well I could Never have forseen it would be ME that couldn't cope with a celibate relationship as I can't do .. well anything...:-( I just couldn't mentally cope with it & my stresses got extreme. Herne was wonderful, he never pushed me just supported me, he was kind, loving, caring, I couldn't have asked for more support, but I couldn't cope. It was such a shock to find that it was Me was wasn't strong enough to cope. The realisation of this was devastating. Part of me wishes that I'd never gone public in saying that we'd got together but it was too lovely to keep quiet, too special to not tell the world when Herneoakshield is such a phenomenally special man :-) It was lovely to be held & wanted after being alone over a decade then someone there who wanted me, wow. He will always be very special to me. My inability to cope was devastating to myself & for Herne even though he says he understood ... Eowyn was never meant to have her Aragorn :-(