Trying to be OS with a Chronic Health Condition

prepareathome

I do write lists to take with me but usually I forget to take them with.......... Councillor has suggested I do a list each day of what I would like to achieve the next day then can cross out what I have managed to do so I can see I am achieving things ( when depression hits I feel so useless and as if doing nothing).

I have not been OS past few days as slept all day Sunday got up for a few hours then asleep again although in that time I got one and a half of the mitts knitted for DGD2 - more like gauntlets as they go to the elbow. Monday I slept till 6pm so hubby fed himself again, both times out of tins. I spent the night sitting in bed knitted and actually watching things on laptop from tv sites. I finished the second mitt and started on some scarves. I was determined to stay awake all day and managed it so have done 3 scarves and decided they make great presents so yesterday afternoon got hubby to take me to yarn shop again where I bought another 5 balls for the scarves and also bought some cooked chicken and I made that with instant mash and tinned vegetables for dinner then was fast asleep by 7pm having been awake 25hrs and that was me, not even waking for bathroom until midday today. I have still to do the shopping for Christmas Day and Boxing Day so hoping I can stay awake long enough to do it today although hubby not home from work yet so don't know if they have asked him to do an extra run, if so it means shopping must be done tomorrow or Friday as no chance on Saturday at all to do anything.

So totally ground to a halt on house, kitchen is a bombsite as nothing has been washed from yesterday as hubby just dumps dishes into sink, we have had dishwasher 3 years and he has still to put it on and so far today I have not got downstairs, and no milk or sugar up here so not had a cup of tea yet.

Have to make a start on next scarf as they take about 3hrs each to make. Got to get some energy from somewhere and get pain levels down, so far hands have been ok for knitting, if not I will be spending Christmas Day cleaning house ready for everyone coming on Boxing Day and will not enjoy them being here as will be to tired and achy.

I have my list of what I need but it involves a few shops, I just had a look at the Asda site and can get most there, so might get hubby to take me there tonight - at least they are open where as Iceland will be closed, so think that is what I will do, do shopping in Asda and Sainsburys only and forget the other shops till next week

Hope everyone is feeling to not bad and coping.

Hugs

zzzLazyDaisy

Grrrr..... I had a good day yesterday, and had a list of things to do today, which should have been do-able with pacing.

Then yesterday evening my bowel blocked (internal blockage due to Crohn's scarring). So I was up all night with abdominal cramps and sickness. Should have gone to hospital really, but normal treatment is to be on a drip for 5 days with intravenous antibiotics and complete rest of my digestive system, and I just couldn't face it.

So now I am in bed, sipping herbal tea, trying to keep it down, and feeling sorry for myself. It will take days to get over this, and I still have to go and buy food for Christmas day. Just the thought of food at the moment.... eewww !!!!

zzzLazyDaisy

prepareathome wrote: »

as no chance on Saturday at all to do anything
Hugs

Thank you, thank you, thank you!!! I could KISS you!!!

For some reason I'd got it into my head that Christmas Day is on Saturday!!

That gives me one more day to get sorted out!

(Next year I am going to hibernate and skip Christmas....)

prepareathome

I am glad I started this thread as its stopping me getting caught up in poor little me syndrome, which I know I have, I know this is excuses but it has been so easy to do as apart from one friend I only have on-line friends and out of them only three are really friends ( I didn't post on Facebook for two months and only those three contacted me outside Facebook, one phoning from abroad as she was so worried) so as hubby is only person I speak to mainly I loss the fact that there are others so much worse than me out there, I live in my own little bubble as if I wasn't part of the world. You all have reminded me this and I am grateful, it makes me try harder, not give in so easily.

I got myself out of my bed yesterday and did my Christmas Shopping, stuck to my plan of going to Asda and Sainsburys only. I admit though dinner was whoopsies from Asda, ready made things, but very cheap, far cheaper than I could have made anything decent. I then knitted another 2 scarves. So that is the main ones done, I do still need to knit at least one other but the last three balls of the yarn are damaged so going to get myself ready soon and wake up hubby ( he as usual went to bed in early hours and has to be up at 5am to be in work for 6 but today only worked till 9am so was home by half past so went back to bed. His ideal which he likes to stick to is stay up half the night, sleep a couple of hours, work his 4 hours then come back sleep all afternoon so he is awake in evening to go to his bowls or watch tv. It got to the stage where he wouldn't take me shopping unless it suited him ( he would call in at SM to pick up things or pop anywhere but not take me) nor anywhere else. So I told him to leave last May and we went through a good few months of arguments, talks, silence till we came to an agreement, we share a home, as its easier and he takes me shopping and helps me - that lasts a month or so and then we have to have another discussion. So I look after him mostly, cooking, washing etc but he is downstairs in the living room and I am in the bedroom, we do not even eat together, Unless I really need him, when we go shopping he sits in car and I go round on my own on my scooter ( oh does he moan about taking that) or walking. Me being overweight is something he cannot stand, he is the type of person that how something looks is important, he cannot see beyond the surface, so to him I am not the same person whom he married. I was slim up till 10 years ago, never dieted just naturally a 12 -14 as I was so active now I am a size 18 and have been for past 5 years. Its not something I am imagining he has told me quite plainly I am far to fat

Anyway enough of my maudlin thoughts, I have to get myself washed and dressed and get him out of his bed and ready as I have to take the damaged yarn back to the wool shop, he is not amused but the three damaged balls cost £21 so its not just a few pounds and although I could sew the yarn into the scarf where its damaged, I did that with one from the first balls, as never thought of taking one ball back, I know its not perfect and will not give that scarf as a gift. So I know there will be moans and groans, I never get out the house without them, Saturday I should as he wants to see the film as well, he was the one that spotted it was on, but although he wants to go for a meal he would rather not have the grandchildren as he just wants to eat and get home to watch TV. I said to him on Christmas Day we will eat together and watch some tv together and straight away he says well you might not want to watch what I want to, he always, always puts himself first.

Oh well better get a move on at its 14.35

Take care everyone I send my love and hugs to each of you

zzzLazyDaisy

Sounds like you need a hug (((((PAH))))))

I am feeling quite pleased with myself today. I have used my bed-rest time to deal with paperwork which has been hanging around for ages. I still have a couple of phone calls to make which I will do tomorrow, but at least they have made it out of the carrier bag and onto the 'to do' list!

zzzLazyDaisy

zzzLazyDaisy wrote: »

For some reason I'd got it into my head that Christmas Day is on Saturday!!

It must run in the family....

I just had a phone call from my son, who is coming to spend Christmas Day with me. He said that he has only just realised today that Christmas Day is this Sunday... he thought it was next weekend.... so now he is out in a mad panic doing the last minute christmas present shopping that he had intended to do next week!

Rosetta92

Prepared at home it sounds like you should be getting some kind of mobility allowance. Could you not use that to get out on your own for a wee while. If you don't need OH to come into the shops can you get a mobility friendly taxi using your allowance?

Haven't read all the posts, but you sound like you've a lot to deal with. Are there any support groups round about that would give you the chance of some social contact with other folks. I know going the first time can be a challenge but it would be worth it to widen your circle a wee bit.

I'm dealing with fatigue at the moment - not sure which individual or combination of health challenges is to blame. I was reading something online about pacing programmes - has anyone had experience of this and could share advice - whether it works or not, practicalities etc?

zzzLazyDaisy

Rosetta92 wrote: »

I was reading something online about pacing programmes - has anyone had experience of this and could share advice - whether it works or not, practicalities etc?

I have never been on a pacing programme, but many years ago when I was first dx'd with Fibromyalgia, my consultant told me that I should only use 75% of my available energy, which means that I end the day with 25% in the bank, as it were. This is because with ME/Fibro and other fatigue related conditions, once you start running on empty, you can't fill the tank back up with one nights rest, and you just get more and more fatigued.

It is hard to do, because on a good day the temptation is to go 'hell for leather' and take the opportunity to catch up with everything, but over time it is possible to adjust.

The other tip I had, from a friend, is 'when you need a duvet day, just take it, you don't need to justify yourself to anyone'. And it is true. If that is what you need to do, factor it into your week. (Of course I do understand that I am lucky being single with no dependents, it isn't as easy when you have children, I know).

LameWolf

Hello people, I just found this thread; not sure how I didn't see it before, as I "live" on the Old Style forum.:D

I have lupus, RA, congenital scoliosis, tinnitus, social phobia and clinical depression with suicidal ideation, and I'm partially deaf; if that little lot doesn't put you off, may I join in here occasionally please?:o

One of the best presents I ever had is a PDA - it's not a Smartphone, (I don't do phones, they scare me to death) but I can program in all my appointments and tasks, and ask it to cheep at me if I want a reminder. It's great!

I won't witter on any more now; I have my household accounts to do, before I get too tired;) but just wanted to introduce myself.:o

Seakay

Prettyinpink wrote: »

Perhaps I'm being harsh on her in that case, and she does have it. She has a tendency to stretch the truth most of the time, that's why I am doubtful about it. And she seemed to go from having a few days in bed suffering to the next week starting up in a running club. I just thought it seemed a bit strange and wouldn't she build up slowly with exercise in case she got another episode?

Not if she's got ME she wouldn't, no.
What you have described is absolutely typical of many sufferers, but a lot of them don't have the courage of your friend to do as much as they can when they can because they are mentally affected by the abuse and suspicion and hurtful comments made by people with no medical qualification, experience or knowledge about a condition, who don't let that stop them giving an opinion and deciding who is or isn't a malingerer.