Tuesday (after I made Tuesdays post).. ANOTHER let down by the support agency (this seems to have become a weekly occurrance ), once again one of the workers didnt show up to take me on my weekly shopping trip down to local store (my other suppport worker was peaved off about it too as we wait the other worker before I go out). I was so exhausted by the time we got back from a very basic food shop that I had to go straight to bed and sleep and was then too unwell to be ringing the agency to say she didnt show. I just got up finally this morning.. ended up spending 36hrs in bed to get back to my baseline after my 2 hrs support on Tuesday and boyfriends support on Monday.. result 36hrs of being then wiped out (not cooking, not showering.. just laying in bed, too exhausted to be able to use a computer). So I texted my boyfriend to get him to let them know (the Complaints person Ive complained about this situation to twice now, has told me that I need to be ringing the agency on the day when people dont show up to let them know.. hard to do when I have another person here Im trying to tell what I need done or are completely wiped out after that support visit). Ive got my boyfriend to request that some of my support time be made up on Thursday when my other carer comes (Im soo glad boyfriend is back to be doing the things others are expecting from me, when Im far too sick to be doing them). Anyway the agency CSI.. like per normal, it hasnt rung me back so Ive no idea if they are going to send that second person to make up some of my support hours or not. A situation Im "trying" not to stress over as they currently owe me 4 hours and if not reolaced by the end of the month I loose them. Its very hard not to stress when I NEED that help (Im going without meals again.. too exhausted to cook during 36hr post exertional wipeout.. ah well on the bright side, due to that and me not cooking and eatting, I dont have hardly any dishes for the support worker to do today and hence will get her to use up the time she would of spent doing dishes for me on helping me make up a big pot of soup today (Hopefully she will show up, she was working with a bad headcold on Tuesday but knew I desperately would need her so came anyway then, I sent her home half an hour early cause she was so sick, which she was going to make up today if she's well enough and if Im well enough to have her here that extra half an hour onto my normal time). Support worker comes again today for a couple of hours.. fingers crossed it doesnt just send me right back to bed again.. I felt so depressed there yesterday as I like to at least be okay enough to be able to use a computer and hate it when Im too exhausted to even be doing that.. I then get so so bord with only my declining condition to think about, nothing to distract me from thinking about it. Too exhausted to read. I couldnt even read the big headings which were 4 times bigger then the normal writing on it, on a DVD which I watched, to my surprise the exhaustion severely affecting my long distance sight (from bed to TV) too (its been quite a while since I last had that going on, usually when Im suffering from exhaustion, only my short distance sight is affected and can blur). I really really hope today Im back to "my" usual baseline). I so so hope that second CSI person comes at the same time (as its too draining on me to have people here longer, it would crash me even worst then what is going on now). If I continue this badly.. Im going to have to change how my support time is given to me and have them here for periods of less then 2hs but to request another change to cater for my worsening condition, it would probably then leave me with less support time being used as this bad agency says it hasnt got many workers in my area (thou I live in city now) and Ive found can take a couple of months to find me a worker. (Disability services had previously put me with a well organised one but pulled my contact with them when they decided the other agency charged too much and they didnt want to pay for it).