A little update from the UK.
On Monday I had my first taste of home support. I went from bed bound/supine from an hour or maybe 50 minutes on my feet. This has resulted in PEM which I expected but didn't quite expect the severity as most of the time my PEM comes from making medical appointments. Three to four hours after activity I crashed with neurological symptoms, pain and fatigue. Interestingly sleep paralysis in the first hour of sleep that had me fighting to wake up but I was so exhausted, I was awake and then back to sleep within seconds.
After two or three weeks of introductions to support workers, I am feeling devastated by the result and tomorrow I am expected to again be active for an hour decluttering/trying to get my home into a maintainable state.
I can't criticise the support workers themselves as they are uninformed general workers, but more the UK system as a whole is at fault but we all know that. I am just allowing a peek into my own personal experience as a CFS/ME/MCS/FIBRO sufferer.
Because my activity level is poor I was sweating within minutes and turned the heating off. We started in one room and after maybe ten minutes I was squatting, casually i was told "Come on then" lets get up and do this. I had already had to (uncomfortably) voice about perfume just on people being present in my house wearing it. So when the kitchen spray was being applied liberally it was far worse than perfume and I had exited the room stating it was affecting me. The support worker did seem to take this on board and thinned it out with water but I was already struggling anyway the whole thing was feeling distressing due to physical symptoms and the lack of understanding. I was asked did I do anything at the weekend, had I plans for the week???! If I had the energy to even make plans or carry them out then my home would not be in this state right! I have asked and they have never worked with a CFS sufferer until now. On taking the trash out i nearly fell over from a sudden pull of dizziness/vertigo and was asked was i okay. I replied I was but this was far from the truth. I don't want sympathy I want understanding and real help suited to my illness.
When she left, I broke down and prayed to God because right now, I have no other solution, and no one to turn to except my friends here at Phoenix. If I cant comply with this home care, then I am not sure what options are. But at this point I will have to enquire and seek advice. Because I am alone, no family etc, there is no one there to step forth and fight for me where I try my best to stay polite and comply. I don't know how other people in the UK have managed who have been alone with this illness. I know how it is for me at the moment and there are many fears coming with it. I don't want to lose my independence. But really do I have any, anymore?
On Monday I had my first taste of home support. I went from bed bound/supine from an hour or maybe 50 minutes on my feet. This has resulted in PEM which I expected but didn't quite expect the severity as most of the time my PEM comes from making medical appointments. Three to four hours after activity I crashed with neurological symptoms, pain and fatigue. Interestingly sleep paralysis in the first hour of sleep that had me fighting to wake up but I was so exhausted, I was awake and then back to sleep within seconds.
After two or three weeks of introductions to support workers, I am feeling devastated by the result and tomorrow I am expected to again be active for an hour decluttering/trying to get my home into a maintainable state.
I can't criticise the support workers themselves as they are uninformed general workers, but more the UK system as a whole is at fault but we all know that. I am just allowing a peek into my own personal experience as a CFS/ME/MCS/FIBRO sufferer.
Because my activity level is poor I was sweating within minutes and turned the heating off. We started in one room and after maybe ten minutes I was squatting, casually i was told "Come on then" lets get up and do this. I had already had to (uncomfortably) voice about perfume just on people being present in my house wearing it. So when the kitchen spray was being applied liberally it was far worse than perfume and I had exited the room stating it was affecting me. The support worker did seem to take this on board and thinned it out with water but I was already struggling anyway the whole thing was feeling distressing due to physical symptoms and the lack of understanding. I was asked did I do anything at the weekend, had I plans for the week???! If I had the energy to even make plans or carry them out then my home would not be in this state right! I have asked and they have never worked with a CFS sufferer until now. On taking the trash out i nearly fell over from a sudden pull of dizziness/vertigo and was asked was i okay. I replied I was but this was far from the truth. I don't want sympathy I want understanding and real help suited to my illness.
When she left, I broke down and prayed to God because right now, I have no other solution, and no one to turn to except my friends here at Phoenix. If I cant comply with this home care, then I am not sure what options are. But at this point I will have to enquire and seek advice. Because I am alone, no family etc, there is no one there to step forth and fight for me where I try my best to stay polite and comply. I don't know how other people in the UK have managed who have been alone with this illness. I know how it is for me at the moment and there are many fears coming with it. I don't want to lose my independence. But really do I have any, anymore?