Danni's Weight Loss Diary
- Thread starter Dannilion
- Start date
Dannilion
*Purple Penguin*
Someone has given me a cold 
My body is not coping with it- it's being very floppy and I can't sit up, so keep falling off the toilet and commode and things.
I had the idea today that maybe one of the carers associations may be able to help with where I should go for respite. Problem is Johan would have to contact them, and he doesn't want to. He's allowed 18 hours of respite a year from Crossroads, but he doesn't want to take it as it's only 18 hours (they're a charity, so I'm guessing that's all they can afford). He's frustrating me by not accepting the help out there, and I'm not well enough to do it for him.
There are definitely care homes that take younger people, as I stayed in one earlier this year. That one isn't on the list though, and I wouldn't go back there as they couldn't cope with my communication problems combined with my physical problems (despite being a care home for those with physical or learning disabilities). I'm too ill to really sort any of it out, but all the help is designed for carers and Johan won't contact them. Grr.
My body is not coping with it- it's being very floppy and I can't sit up, so keep falling off the toilet and commode and things.I had the idea today that maybe one of the carers associations may be able to help with where I should go for respite. Problem is Johan would have to contact them, and he doesn't want to. He's allowed 18 hours of respite a year from Crossroads, but he doesn't want to take it as it's only 18 hours (they're a charity, so I'm guessing that's all they can afford). He's frustrating me by not accepting the help out there, and I'm not well enough to do it for him.
There are definitely care homes that take younger people, as I stayed in one earlier this year. That one isn't on the list though, and I wouldn't go back there as they couldn't cope with my communication problems combined with my physical problems (despite being a care home for those with physical or learning disabilities). I'm too ill to really sort any of it out, but all the help is designed for carers and Johan won't contact them. Grr.
Dannilion
*Purple Penguin*
I need to up my food intake. This cold has been making me feel not hungry, I've had bad nausea that also hasn't helped, and even though I'm not trying to lose weight I lost 3lbs this week. That means I'm actually losing more weight by not following Slimming World than I did while I was doing it. Maybe it'll be a good maintainence diet? Funny thing is I've been eating quite a bit of chocolate, takeaways, full fat yoghurts and stuff.
I contacted the carer's association for Johan, and they're phoning him tomorrow to arrange a meeting to see how they can help. This is good.
I'm still reading a lot of diaries but can't reply to many of them at the moment.
I contacted the carer's association for Johan, and they're phoning him tomorrow to arrange a meeting to see how they can help. This is good.
I'm still reading a lot of diaries but can't reply to many of them at the moment.
Dannilion
*Purple Penguin*
Thank you Orange soup was lovely, and the carer's association are coming out next week for a chat.
I'm really undereating, and I don't know how to fix it, especially since I can't eat when I'm hungry. Johan only has the ability to make me one meal a day, and I can't eat all that much at once as I get full very quickly (the nausea doesn't help). It also doesn't help I'm not on a 24 hour day, more a 30 hour day so I'm waking up and sleeping at different times.
Since I woke up last night (at 10.30pm) I've had a Chicago Town four cheese pizza (one of the individual ones) with carrots, cauliflower and peas, some mint imperials, some Mountain Dew and my normal water. I've also had a bit of Dr Pepper when taking my medication. I worked out the calories for it all and it's less than 900. I won't be having anything more than some more mint imperials before I go to sleep today, either, as it's too much for Johan to get me anything when he wakes up (he's asleep now, and has been since about 2am). This has been a more calorific day as well, as normally I don't have Mountain Dew (which was 40% of the calories) and just drink water instead. Yesterday I had some lamb, mint sauce and veg, plus some mint imperials.
I don't know what I can do about it. I have cereal bars next to my bed, but I can't chew them as I don't have the strength. I struggled to chew the pizza. I struggle to use cutlery, so have to eat foods that can be picked up with fingers. I'm hungry now but I can't wake Johan up to feed me as his medication sedates him.
It doesn't help that as I can't get into the kitchen, I don't know what we have in so don't know what to have half the time, and Johan can't pick meals either. I'm also pretty fussy, and if I try and eat stuff I don't like I'm likely to be sick, which is problem without Some days I don't eat anything more than fruit because I can't decide what to eat before Johan falls asleep. Other days he can't manage putting things in the oven to cook, so end up with just fruit then, too. The fruit is stored in the fridge as our flat gets too warm with the pizza shop downstairs so it's not like I can just have that when I'm hungry, I have to wait until Johan is able to get me it. It's hard to admit but I think that Johan is becoming too ill to be my carer.
Yes I'm losing weight, but my body is too ill to be dealing with it at the moment. It's bad enough losing weight from vomiting, but I'm still losing even when not. My GP wants to refer me to a dietician, but the main problems are not knowing what I want to eat (because I can't remember what we've got in) and Johan not being well enough to feed me.
Orange soup was lovely, and the carer's association are coming out next week for a chat.I'm really undereating, and I don't know how to fix it, especially since I can't eat when I'm hungry. Johan only has the ability to make me one meal a day, and I can't eat all that much at once as I get full very quickly (the nausea doesn't help). It also doesn't help I'm not on a 24 hour day, more a 30 hour day so I'm waking up and sleeping at different times.
Since I woke up last night (at 10.30pm) I've had a Chicago Town four cheese pizza (one of the individual ones) with carrots, cauliflower and peas, some mint imperials, some Mountain Dew and my normal water. I've also had a bit of Dr Pepper when taking my medication. I worked out the calories for it all and it's less than 900. I won't be having anything more than some more mint imperials before I go to sleep today, either, as it's too much for Johan to get me anything when he wakes up (he's asleep now, and has been since about 2am). This has been a more calorific day as well, as normally I don't have Mountain Dew (which was 40% of the calories) and just drink water instead. Yesterday I had some lamb, mint sauce and veg, plus some mint imperials.
I don't know what I can do about it. I have cereal bars next to my bed, but I can't chew them as I don't have the strength. I struggled to chew the pizza. I struggle to use cutlery, so have to eat foods that can be picked up with fingers. I'm hungry now but I can't wake Johan up to feed me as his medication sedates him.
It doesn't help that as I can't get into the kitchen, I don't know what we have in so don't know what to have half the time, and Johan can't pick meals either. I'm also pretty fussy, and if I try and eat stuff I don't like I'm likely to be sick, which is problem without Some days I don't eat anything more than fruit because I can't decide what to eat before Johan falls asleep. Other days he can't manage putting things in the oven to cook, so end up with just fruit then, too. The fruit is stored in the fridge as our flat gets too warm with the pizza shop downstairs so it's not like I can just have that when I'm hungry, I have to wait until Johan is able to get me it. It's hard to admit but I think that Johan is becoming too ill to be my carer.
Yes I'm losing weight, but my body is too ill to be dealing with it at the moment. It's bad enough losing weight from vomiting, but I'm still losing even when not. My GP wants to refer me to a dietician, but the main problems are not knowing what I want to eat (because I can't remember what we've got in) and Johan not being well enough to feed me.
JackieN
One day at a time, one step at a time
I don't know what to say huni I really don't but it appears to me that somewhere along the line the system is letting you both down. It does sound like he is too ill to care for you properly. Could the carers get you toast or something when they come in? Could you eat toast? If so could you have a toaster in your room, some bread , jam that kind of thing> or a packet of crumpets, something that is both filling but reasonably nutritional? Do you like soup? could you have a flask of it? Have you told someone all this? ie people that in theory should be helping :cry:
Have a big :bighug: I find this all so upsetting, as somewhere along the line something is not right :bighug: xxxxx
Have a big :bighug: I find this all so upsetting, as somewhere along the line something is not right :bighug: xxxxx
Dannilion
*Purple Penguin*
JackieN said:
Thanks Jackie. I've considered bread (toast is too complicated) but we tend not to keep it in as we don't eat it much, and it goes mouldy very quickly. Soup is too much for Johan- he can only manage something like reheating things once a day, and that would be instead of cooking. I don't like it cold. I'm not sure who to tell, as telling Johan this made him very upset.
The carers do not come to prepare food, therefore are not allowed to do it. We're also both unable to ask them to do things.
In the meantime my depression is coming back with a vengeance. It'd been 19 months since I last had symptoms.
JackieN
One day at a time, one step at a time
Are you well enough to have a cheap kettle in your room thats filled once a day? that way you could make a mug shot, or something like that if hungry? they are only small packs and don't take up much room but all you need is a mug and warm water either in kettle or flask?
Have alook online shopping at things wrapped individually that you can snack on if hungry...
I just don't know what to say ... someone needs to be told Danni so they can try and help. The system lets millions of people down, because all the system seems to care about is money and figures. Its all so wrong. I guess Johan doesn't want to see how bad things have got, but they have, and it needs dealing with now before you both become too ill for various reasons :bighug: xxxxxx
Have alook online shopping at things wrapped individually that you can snack on if hungry...
I just don't know what to say ... someone needs to be told Danni so they can try and help. The system lets millions of people down, because all the system seems to care about is money and figures. Its all so wrong. I guess Johan doesn't want to see how bad things have got, but they have, and it needs dealing with now before you both become too ill for various reasons :bighug: xxxxxx
Dannilion
*Purple Penguin*
JackieN said:
I thought I'd replied to this? Bah my tablet.
Thanks Jackie. I'm not well enough for that sort of thing- takes me 10 minutes on a good day to open the wrapper for a cereal bar. I have very limited use of my hands.
I'm going to try and tell my social worker, but I doubt he'll care. Johan is admitting now that he's not coping, and the carer's association are now involved (I contacted them to ask them to contact Johan). Lost another pound this week, but standing up to weigh myself caused me to vomit continuously for 90 minutes, so not sure when I'll next be able to try.
Hospital have decided I'm too ill to have my tooth removed, after ending up in A+E while at the assessment appointment. Arg.
Catching up with diaries now
Dannilion
*Purple Penguin*
Thank you both. To be fair to Johan, he's told my social worker and people he's not got enough help before, its just the realisation it was starting to affect my health (and not just his) took a while. The carer's association are going to help with sorting out a new carer's assessment and helping us with respite and stuff, and we've decided that we don't necessarily need a PA with direct payments, we might just go with a different care agency if they're able to help us with what we need. Then we just have to convince my social worker to let us use the hours for things that will actually help, rather than things that look good on care plans.
My current list of demands
I want consistent carers- the same ones each week, and no more than 5 different ones in total (we get carers twice a day at the moment). This will mean that we can teach them how to communicate with us, and when we'll be able to ask them to do stuff, and when they'll just have to use their initiative and do it themselves.
I want them to be able to stick to the times they're meant to come, and for it to be the same times every week. If for some reason they can't, they can contact us (by email, text message or phoning Johan) and we'll probably be okay with that. I'm okay with them being up to an hour late (though would prefer them to contact if it's going to be more than half an hour) but don't cope with people coming early without notice.
I want people who can understand that my condition is variable, and this means that sometimes I won't need personal care as I won't be able to tolerate people touching me, so they can spend the time doing more housework, and other times I'll want more personal care, so the time can be spent on that, rather than housework. I'd also prefer if carers who are doing my hair can plait it, as it keeps it tidier when you spend all day in bed (my hair is very long- reaches my bum when it's loose).
I need carers who understand that I cannot cope with loudness, and who can work quietly, especially if I'm very ill. Also that I struggle being touched, so only do so if it's necessary (and no light touch, as it's execeptionally painful and uncomfortable). Firm touch is fine. If I'm asleep, don't wake me up- my illness means my sleeping pattern can go haywire, and the more sleep I can get the better, even if it's in the middle of the day.
Does any of that seem unreasonable to you? My current care agency cannot get any of that right.
My current list of demands
I want consistent carers- the same ones each week, and no more than 5 different ones in total (we get carers twice a day at the moment). This will mean that we can teach them how to communicate with us, and when we'll be able to ask them to do stuff, and when they'll just have to use their initiative and do it themselves.
I want them to be able to stick to the times they're meant to come, and for it to be the same times every week. If for some reason they can't, they can contact us (by email, text message or phoning Johan) and we'll probably be okay with that. I'm okay with them being up to an hour late (though would prefer them to contact if it's going to be more than half an hour) but don't cope with people coming early without notice.
I want people who can understand that my condition is variable, and this means that sometimes I won't need personal care as I won't be able to tolerate people touching me, so they can spend the time doing more housework, and other times I'll want more personal care, so the time can be spent on that, rather than housework. I'd also prefer if carers who are doing my hair can plait it, as it keeps it tidier when you spend all day in bed (my hair is very long- reaches my bum when it's loose
).I need carers who understand that I cannot cope with loudness, and who can work quietly, especially if I'm very ill. Also that I struggle being touched, so only do so if it's necessary (and no light touch, as it's execeptionally painful and uncomfortable). Firm touch is fine. If I'm asleep, don't wake me up- my illness means my sleeping pattern can go haywire, and the more sleep I can get the better, even if it's in the middle of the day.
Does any of that seem unreasonable to you? My current care agency cannot get any of that right.
JackieN
One day at a time, one step at a time
Do you darling what you ask for is not unreasonable at all to us normal caring people BUT the system cannot cope :cry: Gary's Dad wanted the same did he get it? Nope...... He was lucky towards the end he had two lads who genuinelly cared for him and in fact one rang me to ask me to let him know when the funeral is... One lad has been going there 2 years, the other is a new young lad who gary's dad immediately took too and thought was fab. Unfortunately prior to this the story was not so good. Different times, different people, one who was rude and constantly refused to help his Dad as it was more than she felt she should do, that being the fact he had two ulcers that smelt and she didn't want to go near him so told him that to his face :cry:
The system is wrong, very wrong. There seems to be no thought for those that can't cope with change etc. Surely there should be a way that this can change. I do appreciate there are times when its not possible ie on holiday, off sick but wouldn't it be lovely if the rest of the time it was possible. It appears to be a problem all over the country and I am sure they have their side of the story to tell but having been on the receiving end like you and being a softy who would do anything for anyone I just wish the system could change :bighug: and waffle over xxxxxxxxxxxxxxxxxxxxxxxxxxxx
did he get it? Nope...... He was lucky towards the end he had two lads who genuinelly cared for him and in fact one rang me to ask me to let him know when the funeral is... One lad has been going there 2 years, the other is a new young lad who gary's dad immediately took too and thought was fab. Unfortunately prior to this the story was not so good. Different times, different people, one who was rude and constantly refused to help his Dad as it was more than she felt she should do, that being the fact he had two ulcers that smelt and she didn't want to go near him so told him that to his face :cry:The system is wrong, very wrong. There seems to be no thought for those that can't cope with change etc. Surely there should be a way that this can change. I do appreciate there are times when its not possible ie on holiday, off sick but wouldn't it be lovely if the rest of the time it was possible. It appears to be a problem all over the country and I am sure they have their side of the story to tell but having been on the receiving end like you and being a softy who would do anything for anyone I just wish the system could change :bighug: and waffle over xxxxxxxxxxxxxxxxxxxxxxxxxxxx
Dannilion
*Purple Penguin*
Thanks
Currently relapsing due to hospital appointment (that ended with me in A+E) and then a carer making me crawl to the front door to let her in (it was unlocked, so she could have just used the handle to let herself in). Johan was at our friend Colin's wedding so was out. I was sad to miss the wedding, as Colin is one of my best friends, and has always been there for me (used to take me shopping and stay with me overnight when I lived alone) but I wasn't well enough to get out of bed.
I was going to use direct payments to hire a PA, but because we're both so ill at the moment we may just use them to contract a different care agency. There's one that serves my area that helps people with autism and learning disabilities as well as those with physical disabilities, whereas the one that currently is providing my care mainly caters to older people (apparently I'm the youngest one on their books by decades).
Some days I'm eating two meals a day, which is an improvement
Currently relapsing due to hospital appointment (that ended with me in A+E) and then a carer making me crawl to the front door to let her in (it was unlocked, so she could have just used the handle to let herself in). Johan was at our friend Colin's wedding so was out. I was sad to miss the wedding, as Colin is one of my best friends, and has always been there for me (used to take me shopping and stay with me overnight when I lived alone) but I wasn't well enough to get out of bed.
I was going to use direct payments to hire a PA, but because we're both so ill at the moment we may just use them to contract a different care agency. There's one that serves my area that helps people with autism and learning disabilities as well as those with physical disabilities, whereas the one that currently is providing my care mainly caters to older people (apparently I'm the youngest one on their books by decades).
Some days I'm eating two meals a day, which is an improvement
