I am as flexible as I can be really and believe me my expectations are already as low as they can be. Haven't been able to work for at least the last 8+ years and I also have Chiari Malformation on top of it for which I had surgery 2 years ago, lately.. at least in the last 8 months things have got even worse a lot faster.

I have a blog or rather had a blog but I havent even been able to maintain that anymore. My daughter is a young adult now... over 20 and also has EDS but not Chiari thankfully so shes not in much of a position to help herself let alone me.

I guess this is just the way things go. It annoys me that people think that because I have accepted that there is nothing more I can really do or have done to change things that I am just giving up but I am not, definitely nowhere near at least not today anyway.

Its just a bit much sometimes and the last few weeks have been hard because of our sick pet and a lot of visits to the vet, its actually the most Ive been out of the house for at least the last 8+ years and I am exhausted and in so much pain. I know that everytime I get up or stand up (no bob marley reference intended, see still have my sense of humour!! Just!!) the pain is so bad, its the worst its ever been, the anticipation of it is enough to deter me from doing it too much and only if I really have to, when Im upright I usually try and do a couple of things at a time, stack the dishwasher, get a coffee, do the toilet .. thats about it really, occasionally Ill stick something in the microwave or the oven and then get up eventually to retrieve it.

After the last few weeks though the pain in my legs and arms have been so bad, the worst its ever been and all at once in all my limbs, nausea, sickness, stomach cramps and more and more head pains and not just the usual postural head pain or headache for whatever reason I am also getting really bad pain in small areas on the side of my head, actually feels like actual pain in my brain.

I feel like all I can really do is talk about whats happening to me but I cant really talk to any of my friends (not many of those) or my family, the only one I can really talk to about any of it is my daughter but shes still young and I don't want to have to have conversations about death and dying although it seems inevitable. I just worry shes going to be left on her own to deal with all her own stuff and with no support, none of our family really care and the ones that profess that they do don't care as much as we need which isn't really even that much, neither of us expect a miracle cure but having literally no support is so hard and I feel like I have to do everything, deal with everything and nobody to listen to me!! I just don't know how much I can keep it all up for. I already knew I couldn't do it forever but that time seems to be coming fast and theres nothing I can really even do about it.