Saturday
Am still very tired but walking was better today on the whole. Someone said I didn't sound as cheerful as usual but I think that's just me feeling so tired .. went to bed late but still had a reasonable night's sleep and didn't wake up til nineish this morning. I don't tend to talk as much when I'm tired. Just been on the phone with someone who reacts the opposite way .. he goes on autopilot and talks a lot more than usual .. he's just had his first good night's sleep for a while .. but is still kind of on autopilot .. but better than the last couple of weeks or so. Suited me .. meant that I could just listen most of the time.
Said to him to write down what he has to say to his consultant and post it to him a week before going as he says someone else tends to take over in the consultation and he doesn't get much chance to say what he needs in the time he's there. If he does write then the consultant can address specific questions to him. Otherwise it might look to the consultant as if he's ok with how things are when in reality he's got things he feels he needs to talk about. Even in my exhausted state it seems the right thing to do if you're having those kinda difficulties.
Got a new pair of shoes today .. just like me last ones .. and they're a fine fit. The other's had started going a while back but I didn't really feel like getting them sorted .. then all of a sudden there was a mega split and I had to get something done about them. Had no trouble at all though. They fit fine.
Have stayed up late again .. this illness can be a pain for a lot of different reasons .. I'd've been up agai whether I'd gone to bed or not.
Found a useful site this evening about meds
http://www.revolutionhealth.com/
And read another leaflet about my illness. I hadn't read it before because I'd been given a leaflet in hospital and just assumed it was that one .. but it wasn't .. this one is the most informative one I've read I guess .. not good news for me again as I discovered that the mortality rate is much higher if the illness is both on the mucous membranes and skin than just the mucous membranes .. and that's without a family history of skin cancer and having spent a lot of time in the sun in my life which would make me a candidate for skin cancer anyway without the cellcept pushing it on in that direction along with me auto immune illness. I also have the bone and muscle problem now as well. Getting on up to a 50% rate if you have the combined problem with the illness to start with without the additional problems.
Though my illness isn't producing too many new symptoms .. it took a long time for the initial skin problems to respond to treatment .. should take about six weeks. It took me a lot longer and it's still not sorted out .. though, on the other hand .. I didn't have such a large area covered by the illness .. inside and out .. as some people do. I found it hard to take in that some poor souls had a 50% covering at some point or other from the illness. I had some much larger patches on my legs at one point than those visible on my neck but never anything near 50%.
Still a pottering through though. Found out today that my newer friend doesn't have as much of a belief system as I thought she would .. though is very spiritual in a lot of ways. I expect we will talk more. I've been reading some of the NDEs on a site I've found. They're quite amazing .. will only read a few I think though. There are so many. And there are a lot of other things to read. Wish I'd read them earlier. I've known two people who've had NDEs.. well, two that have talked about them anyway .. and, a number, who've had other otherwordly type experiences.
I wish I'd taken a bit more notice the first time around .. instead of asking for it to stop .. but I guess in reality maybe I wasn't really ready to explore all this .. after that there was a very definite stoppage shall we say!!!
Anyway .. time for bed .. I should sleep through for a few hours now. Certainly wouldn't've before. It's not been a bad day really. It's had it's funny moments in a furry type of way too.
Said to him to write down what he has to say to his consultant and post it to him a week before going as he says someone else tends to take over in the consultation and he doesn't get much chance to say what he needs in the time he's there. If he does write then the consultant can address specific questions to him. Otherwise it might look to the consultant as if he's ok with how things are when in reality he's got things he feels he needs to talk about. Even in my exhausted state it seems the right thing to do if you're having those kinda difficulties.
Got a new pair of shoes today .. just like me last ones .. and they're a fine fit. The other's had started going a while back but I didn't really feel like getting them sorted .. then all of a sudden there was a mega split and I had to get something done about them. Had no trouble at all though. They fit fine.
Have stayed up late again .. this illness can be a pain for a lot of different reasons .. I'd've been up agai whether I'd gone to bed or not.
Found a useful site this evening about meds
http://www.revolutionhealth.com/
And read another leaflet about my illness. I hadn't read it before because I'd been given a leaflet in hospital and just assumed it was that one .. but it wasn't .. this one is the most informative one I've read I guess .. not good news for me again as I discovered that the mortality rate is much higher if the illness is both on the mucous membranes and skin than just the mucous membranes .. and that's without a family history of skin cancer and having spent a lot of time in the sun in my life which would make me a candidate for skin cancer anyway without the cellcept pushing it on in that direction along with me auto immune illness. I also have the bone and muscle problem now as well. Getting on up to a 50% rate if you have the combined problem with the illness to start with without the additional problems.
Though my illness isn't producing too many new symptoms .. it took a long time for the initial skin problems to respond to treatment .. should take about six weeks. It took me a lot longer and it's still not sorted out .. though, on the other hand .. I didn't have such a large area covered by the illness .. inside and out .. as some people do. I found it hard to take in that some poor souls had a 50% covering at some point or other from the illness. I had some much larger patches on my legs at one point than those visible on my neck but never anything near 50%.
Still a pottering through though. Found out today that my newer friend doesn't have as much of a belief system as I thought she would .. though is very spiritual in a lot of ways. I expect we will talk more. I've been reading some of the NDEs on a site I've found. They're quite amazing .. will only read a few I think though. There are so many. And there are a lot of other things to read. Wish I'd read them earlier. I've known two people who've had NDEs.. well, two that have talked about them anyway .. and, a number, who've had other otherwordly type experiences.
I wish I'd taken a bit more notice the first time around .. instead of asking for it to stop .. but I guess in reality maybe I wasn't really ready to explore all this .. after that there was a very definite stoppage shall we say!!!
Anyway .. time for bed .. I should sleep through for a few hours now. Certainly wouldn't've before. It's not been a bad day really. It's had it's funny moments in a furry type of way too.
posted by Zeb at 12:26 PM
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