Danni's Weight Loss Diary
- Thread starter Dannilion
- Start date
Dannilion
*Purple Penguin*
Thank you 
The problem with having bottled water (which I drink anyway because for some reason our tap water is disgusting) is that I'm not strong enough to lift the bottle. I can do it as a one off, but it makes me more ill. A lot of the time I don't even have the strength to lift a cup, but I have a water bottle on the back of my bed with a tube so drink from that.
The good news is Johan's doing a lot better tonight. Turns out just having a few hours in the MetroCentre gave him the respite he needed from looking after me, so we should be able to manage until Monday morning now.
The bad news is tonight's carer had an attitude problem. I'm not well enough for any personal care (too ill for a wash or teeth brushing or anything as I'm too sensitive at the moment, which is normal at this level of illness) so we asked her to wash some dishes, which is on my care plan. She refused. It takes so much for us to be able to ask for the carer to anything anyway, and to be rejected like that hurts a lot (especially since it's on my care plan so she's meant to do it). Johan's having a good night (other than that) so he was able to ring the care agency and let them know what happened. Normally he's not well enough to do that, so I'm very proud of him. It does make things harder though.
The problem with having bottled water (which I drink anyway because for some reason our tap water is disgusting) is that I'm not strong enough to lift the bottle. I can do it as a one off, but it makes me more ill. A lot of the time I don't even have the strength to lift a cup, but I have a water bottle on the back of my bed with a tube so drink from that.
The good news is Johan's doing a lot better tonight. Turns out just having a few hours in the MetroCentre gave him the respite he needed from looking after me, so we should be able to manage until Monday morning now.
The bad news is tonight's carer had an attitude problem. I'm not well enough for any personal care (too ill for a wash or teeth brushing or anything as I'm too sensitive at the moment, which is normal at this level of illness) so we asked her to wash some dishes, which is on my care plan. She refused. It takes so much for us to be able to ask for the carer to anything anyway, and to be rejected like that hurts a lot (especially since it's on my care plan so she's meant to do it). Johan's having a good night (other than that) so he was able to ring the care agency and let them know what happened. Normally he's not well enough to do that, so I'm very proud of him. It does make things harder though.
Dannilion
*Purple Penguin*
Thank you
Managed to keep all my food down yesterday and today, though it's been threatening to come back up the last couple of hours. Turns out pasta bake is really unpleasant to regurgitate
Yesterday I had a Ryvita crackerbread, a Build Up drink, and 330ml Dr Pepper (I drink around 1.5-3 litres of water every day as well).
Today I've managed another crackerbread, a banana, a tiny portion of pasta bake, a Gu chocolate pot, 330ml Dr Pepper, and 2 frozen grapes. It's an improvement
Still keeping my sick bag next to me as the nausea is horrendeous, but hopefully it will stay down and my body may even digest it
Weigh in on Tuesday is going to be interesting.
Johan's mood has been mostly okay today, though he's not really trusting my opinion on what things I can manage, telling me not to have a chocolate pot (it's more pleasant to bring up than the pasta bake is) and not wanting to get a kebab for himself as he thought the smell would be too much, despite me saying I was doing fine smell-wise.
I slept a lot of today (Sunday), which is why I'm still up now. Need to get my sleeping pattern back to normal, but it's not the main priority right now.
Johan's appointment with the psychiatrist tomorrow, though it's afternoon not morning. He's feeling well enough to go by himself, which is good as I'm not really well enough to go with him. I'll make sure he takes some notes of things he's meaning to discuss though, as I know what he's like for forgetting.
Tomorrow's aims: to look at my list of foods I can eat while ill, and pick a nice selection that I think I can tolerate. I also want to get dressed if possible, even if it's just leggings and a t-shirt to lie in bed wearing
Luckily it was lovely Icelandic carer tonight. Tonight she washed me in bed, cleaned my teeth, helped me into clean pyjamas, then put my hair in a French plait as I felt up to sitting up for 10 minutes She also washed the dishes and had a little chat/moan about the care agency while filling in the book. She's back tomorrow morning as well, so at least I know we've got someone nice
Managed to keep all my food down yesterday and today, though it's been threatening to come back up the last couple of hours. Turns out pasta bake is really unpleasant to regurgitate
Yesterday I had a Ryvita crackerbread, a Build Up drink, and 330ml Dr Pepper (I drink around 1.5-3 litres of water every day as well).
Today I've managed another crackerbread, a banana, a tiny portion of pasta bake, a Gu chocolate pot, 330ml Dr Pepper, and 2 frozen grapes. It's an improvement
Still keeping my sick bag next to me as the nausea is horrendeous, but hopefully it will stay down and my body may even digest it
Weigh in on Tuesday is going to be interesting.
Johan's mood has been mostly okay today, though he's not really trusting my opinion on what things I can manage, telling me not to have a chocolate pot (it's more pleasant to bring up than the pasta bake is) and not wanting to get a kebab for himself as he thought the smell would be too much, despite me saying I was doing fine smell-wise.
I slept a lot of today (Sunday), which is why I'm still up now. Need to get my sleeping pattern back to normal, but it's not the main priority right now.
Johan's appointment with the psychiatrist tomorrow, though it's afternoon not morning. He's feeling well enough to go by himself, which is good as I'm not really well enough to go with him. I'll make sure he takes some notes of things he's meaning to discuss though, as I know what he's like for forgetting.
Tomorrow's aims: to look at my list of foods I can eat while ill, and pick a nice selection that I think I can tolerate. I also want to get dressed if possible, even if it's just leggings and a t-shirt to lie in bed wearing
Luckily it was lovely Icelandic carer tonight. Tonight she washed me in bed, cleaned my teeth, helped me into clean pyjamas, then put my hair in a French plait as I felt up to sitting up for 10 minutes
She also washed the dishes and had a little chat/moan about the care agency while filling in the book. She's back tomorrow morning as well, so at least I know we've got someone nice
Dannilion
*Purple Penguin*
A better day today. Going to try and get back to sleeping at a reasonable time, so no afternoon nap for me today (though I didn't wake up until 1.30pm, by 5pm I was flagging). Also sat up for way too long raiding with my guild in World of Warcraft, so I'm in more pain than normal, but I enjoyed it, we made some progress, they needed me as they were short a healer, and maybe the extra activity will help me sleep tonight
Johan went to his appointment with the psychiatrist. It was about his autism assessment rather than his mental health, but since he's been okay the last couple of days that was fine. Not entirely sure what they talked about, but the one hour appointment lasted nearly two hours The psychiatrist can't diagnose him by herself, but is referring him to a team that can, and is organising other tests and things. She didn't dismiss the possibility out of hand, which is good (Johan tried to get an assessment while in Hull but his GP then said that because he could make eye contact he couldn't possibly be autistic- erm, it doesn't work like that). I thought he was autistic from the moment I met him (a lot of autistic people are good at spotting it in other people) and his parents also think he is, so hopefully we'll find out if that's accurate and maybe get some support. Ideally we want him to go to the same autism unit at college I went to, as the things they teach there would be very helpful to him (whether he gets diagnosed or not) but there may be problems with that as it's oversubscribed now, and we don't know how long it'll take before he gets a diagnosis, and funding is harder to get now than it was when I started there. We'll see though, as I suspect the staff there will try and help if they think it's suitable.
Food-wise I'm doing okay in that I've not vomited properly for a couple of days. Today I've had a build up shake, some frozen grapes and have been nibbling on a crackerbread all afternoon (about halfway through it now). Stomach and throat are really sore, so not wanting to risk upsetting it by trying anything too heavy today. I'm getting full really easily though- took me an hour to drink the build up shake as I felt full, and I had about a dozen frozen grapes and felt really uncomfortable afterwards. I'm sure when things settle down my appetite will increase again.
I am reading diaries, but it's hard to reply at the moment. *Squishes* to everyone
Johan went to his appointment with the psychiatrist. It was about his autism assessment rather than his mental health, but since he's been okay the last couple of days that was fine. Not entirely sure what they talked about, but the one hour appointment lasted nearly two hours
The psychiatrist can't diagnose him by herself, but is referring him to a team that can, and is organising other tests and things. She didn't dismiss the possibility out of hand, which is good (Johan tried to get an assessment while in Hull but his GP then said that because he could make eye contact he couldn't possibly be autistic- erm, it doesn't work like that). I thought he was autistic from the moment I met him (a lot of autistic people are good at spotting it in other people) and his parents also think he is, so hopefully we'll find out if that's accurate and maybe get some support. Ideally we want him to go to the same autism unit at college I went to, as the things they teach there would be very helpful to him (whether he gets diagnosed or not) but there may be problems with that as it's oversubscribed now, and we don't know how long it'll take before he gets a diagnosis, and funding is harder to get now than it was when I started there. We'll see though, as I suspect the staff there will try and help if they think it's suitable.Food-wise I'm doing okay in that I've not vomited properly for a couple of days. Today I've had a build up shake, some frozen grapes and have been nibbling on a crackerbread all afternoon (about halfway through it now). Stomach and throat are really sore, so not wanting to risk upsetting it by trying anything too heavy today. I'm getting full really easily though- took me an hour to drink the build up shake as I felt full, and I had about a dozen frozen grapes and felt really uncomfortable afterwards. I'm sure when things settle down my appetite will increase again.
I am reading diaries, but it's hard to reply at the moment. *Squishes* to everyone
Dannilion
*Purple Penguin*
I've lost 1lb since Saturday, which means I've lost 5lbs since last Tuesday. Also left a message on my Slimming World group's Facebook page to say I'll not be there for a while.
Very tired today, as Johan forgot to close the window last night so I kept waking up cold. The carer I was meant to have was replaced by one of my favourite carers, so she did some dishes while I was waking up, helped me get up, dressed and teeth brushed, then tidied the living room a bit and took the rubbish out. It means I'm wearing clothes today- just leggings and a t-shirt, so they're comfy to lie in, but it's still nice to be dressed for once.
Feeling really sick again today, so will be taking it easy food-wise. I'm hoping to try some chicken later though, as there has been a lack of protein in my diet.
Very tired today, as Johan forgot to close the window last night so I kept waking up cold. The carer I was meant to have was replaced by one of my favourite carers, so she did some dishes while I was waking up, helped me get up, dressed and teeth brushed, then tidied the living room a bit and took the rubbish out. It means I'm wearing clothes today- just leggings and a t-shirt, so they're comfy to lie in, but it's still nice to be dressed for once.
Feeling really sick again today, so will be taking it easy food-wise. I'm hoping to try some chicken later though, as there has been a lack of protein in my diet.
It's good that you had a good carer this morning and that you are dressed, it will make you feel more like it's daytime, and then, perhaps you will sleep better.
It's strange how we all want to lose weight, then when we are unwell, we hate losing the weight.
:bighug:
It's strange how we all want to lose weight, then when we are unwell, we hate losing the weight.
:bighug:
Dannilion
*Purple Penguin*
It does seem a bit odd, yes I don't mind losing weight by eating healthily and doing as much activity as I can manage (sitting up for me) but I'm aware that I was once very underweight at 7 1/2 stone from not eating because of gallstones, and it was difficult for me to get back into normal eating habits (and a normal weight) afterwards. It also doesn't feel like an achievement to lose weight when I can't help it, rather than because I've made sensible choices and stuck to plan.
Thank you for the hug
I don't mind losing weight by eating healthily and doing as much activity as I can manage (sitting up for me) but I'm aware that I was once very underweight at 7 1/2 stone from not eating because of gallstones, and it was difficult for me to get back into normal eating habits (and a normal weight) afterwards. It also doesn't feel like an achievement to lose weight when I can't help it, rather than because I've made sensible choices and stuck to plan.Thank you for the hug
tillymax
Gold Member
Does getting dressed make you feel better? I know it's a silly question but whenever I'm ill, if I can get dressed I feel better than if I'm in my jim jams.
At least they've got the ball rolling with Johan. I know it might take a while to get something sorted but at least it's a start.
Two days in a row with a good carer. I'll keep my fingers crossed that you get another good one tomorrow.
At least they've got the ball rolling with Johan. I know it might take a while to get something sorted but at least it's a start.
Two days in a row with a good carer. I'll keep my fingers crossed that you get another good one tomorrow.
iwillbeaskinnykatie
Full Member
Hey Dannilion, how are you getting on? Well done on your weight loss so far x
x
Dannilion
*Purple Penguin*
tillymax said:
Sometimes getting dressed makes me feel better, sometimes not. It depends how ill I'm feeling. It helped today.
So much for trying to get back to a normal sleep schedule- by 3pm I'd fallen asleep again. Woke up about 8pm. Johan reminded me that I want to be on American sleep anyway for the weekend (it's Blizzcon and we have a web ticket) so will work on getting it back to normal after that.
Good news is I woke up feeling a lot less nauseous, and have been able to eat normal food
Had some chicken, a small piece of garlic bread, some grapes and a yoghurt. Going to eat what I fancy over the next couple of days, and then go back to normal, I think. Before I fell asleep I had a packet of white chocolate buttons.If I start eating normally then I'll probably put a bit of weight on next week. I'm fine with that so long as it's not more than 5lbs
Johan is staying up with me until 3am tonight as he's wanting to see what the new phone Google is announcing. I have my social worker coming out tomorrow with the occupational therapist to do my bath assessment, and also going to ask them about other equipment to help me. Luckily I have no carer tomorrow morning, and he's coming in the afternoon, so I can sleep well. Tomorrow evening's carer is meant to be lovely Icelandic carer, so that will be good
Dannilion
*Purple Penguin*
Woke up this morning feeling absolutely rotten- freezing because it's cold outside, in a lot of pain, and to top it all off I've managed to catch a cold somehow!
Feeling a bit better now though, as I've had painkillers (including ibuprofen for the cold), we've had the heating on and my appetite is back. Had a banana this morning, some frozen grapes and a crispbread, and about to have a sweet potato with cheese. No measuring anything but I'm practically following SW again today Still going to eat what it is I fancy over the next couple of days to see how things go, then work on eating sensibly until I'm well enough to follow the plan properly.
I'm also getting a bath lift in the next couple of weeks I miss going in the bath since I've been to ill to get back out again, and the occupational therapist didn't even need to get me out of bed- just asked Johan some questions about my weight (he said I was 13 1/2 stone! I'm almost a stone lighter than that ), height, how much upper body strength I've got (pretty much none) and things. He's recommended a reclining bath lift as I get dizzy sitting upright, so that would be good. Also means I can use a bath for pain relief again, which will be awesome for the muscle pain I've been having recently.
Johan's still doing okay. He's thinking of applying for DLA now he's accepted how many problems he has (especially since I'm too ill now to compensate). I would fill in the form for him as I'm normally good at them, but I'm too ill at the moment We're not expecting much, and expecting to be declined initially, but if he gets it it'll go towards a support worker to help him with organisation and stuff. We'll be getting the support worker anyway, but I'll be paying for it out of my DLA even though it's not for me initially
Feeling a bit better now though, as I've had painkillers (including ibuprofen for the cold), we've had the heating on and my appetite is back. Had a banana this morning, some frozen grapes and a crispbread, and about to have a sweet potato with cheese. No measuring anything but I'm practically following SW again today
Still going to eat what it is I fancy over the next couple of days to see how things go, then work on eating sensibly until I'm well enough to follow the plan properly.I'm also getting a bath lift in the next couple of weeks
I miss going in the bath since I've been to ill to get back out again, and the occupational therapist didn't even need to get me out of bed- just asked Johan some questions about my weight (he said I was 13 1/2 stone! I'm almost a stone lighter than that ), height, how much upper body strength I've got (pretty much none) and things. He's recommended a reclining bath lift as I get dizzy sitting upright, so that would be good. Also means I can use a bath for pain relief again, which will be awesome for the muscle pain I've been having recently.Johan's still doing okay. He's thinking of applying for DLA now he's accepted how many problems he has (especially since I'm too ill now to compensate). I would fill in the form for him as I'm normally good at them, but I'm too ill at the moment
We're not expecting much, and expecting to be declined initially, but if he gets it it'll go towards a support worker to help him with organisation and stuff. We'll be getting the support worker anyway, but I'll be paying for it out of my DLA even though it's not for me initially
iwillbeaskinnykatie
Full Member
Sorry to hear that hun, hope you feel better soon x
Dannilion
*Purple Penguin*
Since I got my appetite back I've been eating complete junk (lots of sweets, chocolate, crisps and takeaways) and stayed the same when I weighed myself yesterday. I was sure I'd gained, but obviously not. Am starting to eat more sensibly again now.
I'm a bit worried because I'm seeing my M.E. consultant tomorrow, and I'm not well enough to travel there. We can get taxis, and I'll be taking cushions and sick bags, but it's still a long way, and involves going up the stairs to my flat again when I get back. We should have booked ambulance transport but forgot, and it's too late now.
Will be telling my consultant that things are getting worse, and asking his advice to deal with the muscle spasms and jerks in my limbs, as they're the main reason I'm not sleeping when I want to (didn't get to sleep until 12.30pm yesterday because of them, waking up at 10.45pm). I also need to figure out a way to be awake for the appointment tomorrrow afternoon. Probably alarm clocks and apologies for being nearly unverbal.
I do have a bath lift now Will probably be trying it this afternoon, as I have a bath call. I've missed being able to have baths.
My SW consultant sent me a lovely card. I miss going to the meetings, but I'm reading the Facebook group. Hopefully I'll improve a bit soon so I'll be able to go back. No worrying about food until then though- just going to be a bit more sensible than the last week
I'm a bit worried because I'm seeing my M.E. consultant tomorrow, and I'm not well enough to travel there. We can get taxis, and I'll be taking cushions and sick bags, but it's still a long way, and involves going up the stairs to my flat again when I get back. We should have booked ambulance transport but forgot, and it's too late now.
Will be telling my consultant that things are getting worse, and asking his advice to deal with the muscle spasms and jerks in my limbs, as they're the main reason I'm not sleeping when I want to (didn't get to sleep until 12.30pm yesterday because of them, waking up at 10.45pm). I also need to figure out a way to be awake for the appointment tomorrrow afternoon. Probably alarm clocks and apologies for being nearly unverbal.
I do have a bath lift now
Will probably be trying it this afternoon, as I have a bath call. I've missed being able to have baths.My SW consultant sent me a lovely card. I miss going to the meetings, but I'm reading the Facebook group. Hopefully I'll improve a bit soon so I'll be able to go back. No worrying about food until then though- just going to be a bit more sensible than the last week
Dannilion
*Purple Penguin*
I'm still reading lots of diaries, but not been feeling up to posting much here. Lost a 1lb this week, which is fine as I've not been vomiting and though I've not been following the plan, I've not gone overboard either.
Feeling rotten today. Had a bath call with a nice carer but not well enough to go into the bathroom Hate being this bad because I struggle to sit up and have to use the commode rather than the toilet, which makes me feel even worse as Johan has to clean up.
I've managed to sort out my sleeping pattern. After a couple of false starts where I tried getting up at a certain time then trying to go to sleep earlier, I decided to push back when I was sleeping and that worked. Went to sleep about 7pm last night, and woke up about midday today (but I think that was mostly because I'm particularly ill). Tonight I'll be trying to sleep no later than midnight, and setting my alarm for 9.30am with the aim of getting up about 10am.
Saw the doctor at the hospital last Thursday, and she doesn't want me going to another appointment until I'm doing better as they're making me more ill, and because I have a decent GP who will do stuff for me. She also suggested that I stop seeing the CFS clinic as the travelling is making me ill so it's making me worse, which is counterproductive. Johan phoned the physiotherapist today and they've put my file on hold until I improve.
I've got a date for my tooth to be removed, and for my preadmission. I think I need to speak to my doctor about the best way to get there, as I can't sit up for very long. I think they want me to be a day patient (I'm having a general anaesthetic) but that may be a bit optimistic. We'll see though.
I'll try and post here more often, it's just hard to know what to say. I'm mostly posting on my blog (http://dannilion.com if anyone's interested).
Feeling rotten today. Had a bath call with a nice carer but not well enough to go into the bathroom
Hate being this bad because I struggle to sit up and have to use the commode rather than the toilet, which makes me feel even worse as Johan has to clean up.I've managed to sort out my sleeping pattern. After a couple of false starts where I tried getting up at a certain time then trying to go to sleep earlier, I decided to push back when I was sleeping and that worked. Went to sleep about 7pm last night, and woke up about midday today (but I think that was mostly because I'm particularly ill). Tonight I'll be trying to sleep no later than midnight, and setting my alarm for 9.30am with the aim of getting up about 10am.
Saw the doctor at the hospital last Thursday, and she doesn't want me going to another appointment until I'm doing better as they're making me more ill, and because I have a decent GP who will do stuff for me. She also suggested that I stop seeing the CFS clinic as the travelling is making me ill so it's making me worse, which is counterproductive. Johan phoned the physiotherapist today and they've put my file on hold until I improve.
I've got a date for my tooth to be removed, and for my preadmission. I think I need to speak to my doctor about the best way to get there, as I can't sit up for very long. I think they want me to be a day patient (I'm having a general anaesthetic) but that may be a bit optimistic. We'll see though.
I'll try and post here more often, it's just hard to know what to say. I'm mostly posting on my blog (http://dannilion.com if anyone's interested).
Hiya Danni,
I was actually thinking about you whilst I was cleaning up after dinner, and thought, that I must find your diary, or post to you on Facebook, because I have been really neglectful lately of everyones diaries x
Did you get the extra care that you and Johan needed?
I was actually thinking about you whilst I was cleaning up after dinner, and thought, that I must find your diary, or post to you on Facebook, because I have been really neglectful lately of everyones diaries
xDid you get the extra care that you and Johan needed?
Dannilion
*Purple Penguin*
Nothing much yet, Lynne. I've got to choose a care home to go to for respite, but my social worker has just given me a table that I can't make any sense of. I'm going to have to email him and ask him what all the headers mean, and although he's not allowed to recommend one to me (which is stupid, in my opinion) he should at least be able to tell me which ones are for old people and which ones are for younger people. It's just I'd feel a bit odd going into a care home designed for people at least 40 years older than me
Still waiting to hear about where we can get a support worker from as well.
Still waiting to hear about where we can get a support worker from as well.
