Trying to be OS with a Chronic Health Condition

rising_from_the_ashes

prepareathome wrote: »

I used to to try to be superwoman, doing everything, not asking or expecting help so not being able to do things has I admit made me feel a failure I was always the one on call helping, so asking for help is still very hard, still not asking hubby as much as I should. Kids and rest of family don't help nor ask if I need it, am just classed as lazy - 'well you could do more if you pushed yourself' Don't see grandkids to often, not because am not allowed but because I cannot get to their homes, ' if you really love them you will come over'.

I get really down when I think of everything I used to do (2 jobs as well as college, went out all the time etc) but I've had a long time (around 10 years) to adjust and come to terms with the fact that things are different now ..... I totally agree with Charlies-aunt's "that's good enough" methods - my house is OK but not as clean & tidy as it should be etc etc.

I hardly ever see my friends - I get the "pop over in the evening" or "lets go out on Friday night" and they just don't get that I can't as I'm literally exhausted. The only time I can meet up with anyone is if I've a few days off so I've time to recover before going back to work - and I do feel very isolated at times.

Some programmes like Embarrassing Illnesses & The Food Hospital have helped as they've covered Crohn's & Ankylosing spondylitis and I'll get a phone call "I saw this last night.... that's what you've got isn't it.... it's awful" but then people quickly forget (and tbh why shouldn't they).

prepareathome wrote: »

My three main problems are pain, exhaustion and muddleheadedness - lucky they don't usually hit at same time. Its just never knowing how I will be from day to day or hour to hour

Yup, totally get where you're coming from. TBH, I can't remember the last totally pain free day I had - you gradually come to terms with it and have good days and worse days. Exhaustion is the killer for me too - I can take painkillers and put up with pain to a certain extent but the exhaustion just hits you and you literally can't do anything.

I've had to go for a sleep this afternoon and all I've done today is go to the sm.... hardly a strenuous day!

prepareathome wrote: »

It was funny I had advisor here other week to fill in ESA form for me as I am on IB and I could tell he thought there was nothing much wrong with me, he saw this middle aged fat woman who was to lazy to work. He kept asking me what I would do if DWP suddenly told me I had to go to a job then next day and I said I couldn't say I could as wouldn't know how I would be, and the look of disbelief he gave me. Then we went through the form and came to the part about bladder control and I had to tell him about my problem, then boy did he change and said how I would not fit into a work situation like that and suddenly became much more helpful.

The most humiliating experience of my life was at my DLA appeal (I had a Welfare Rights person help with the application and he thought I should be entitled to middle rate care and low rate mobility). When it was turned down he said I should appeal and came to the hearing with me.

I am quite a strong person but the woman who was the Chair was so, so horrible and condesending etc she had me in tears (not easy to do) - she clearly didn't believe me when I said I couldn't cook at night, had trouble with toilet issues etc and said she didn't accept that my employer would be understanding that I may have to go to the toilets frequently/urgently. She asked how many "accidents" I had, how I dealt with these etc etc and it really was horrific.

She said if I managed to work it couldn't be that bad (despite DLA being awardable even if you do work).

The WR person said to put in a new claim 6 months later but I just can't face going through that again.:(

prepareathome wrote: »

Sorry I really am turning this into a moaning thread and honestly not what I meant and will try not to any more.

Not at all - most people don't understand and as others have said, they see the bits on the outside that look fine and have no idea how you are feeling inside or how much of a struggle things can be.


With regards to OS - it's do as much as you can when you can. Tackle things one at a time - it took me weeks to do the winter prep in the house .... sewed heading tape onto curtains one day, attached fleece linings another, hung them up another etc but you will eventually get there, it just takes a bit longer (I would've done all these in a couple of hours at one point) and a bit more planning.

I managed to build up my winter stocks by getting a little extra everytime I went shopping over several weeks - I couldn't run around at the last minute now trying to get everything organised.

I also buy things (eg mince / whole chickens / sausages / reduced joints etc) when on offer & freeze - this way, if I'm having a "good day" I can take them out and batch cook and freeze into portions for use during the week when I don't have the energy to cook ... if I had to go to the sm before doing this that would wipe me out before I started!:)

I'm also the same as GreyQueen in that I'll do a huge batch of say mince and another of chilli and another of spag bol sauce at the same time as it's the same effort to stick the different ingredients into pans and cook together ... little things like this can make a big difference. Same with crumbles etc - make 2 / 3 at the same time, cook together and you've then got several to put in the freezer to save having to do it for a while - also great for using the most of the electric for the oven for more than one thing.

Chickenopolis

prepareathome wrote: »

Chickenopolis what did you change in your diet as I to am so fed up with this tiredness I feel I sleep the winter away ( this is the 5th year of this) and each winter I have ended up very depressed by March where I have one night where I basically want to end it all and have to fight with myself all night - past two years have chatted to a nurse most of the night on NHS Direct, and then like an abscess that has burst, the next morning I am fine, totally fine no depression at all and none again till the next March as although I have everything else I do not sleep much at all.

prepareathome- reading your second post it sounds that there is a lot more going on for you ((hugs)). Your depression may make your sleep pattern erratic - either under or oversleeping . Personally I do not feel that some of the comments that you have received around "pushing yourself " and "making more of an effort" are helpful . If it was that easy to do , you would have done it! Its a bit like the old "pull youself together" arbitrary statement that serves only to make people feel even worse about themselves. I think people think that they are helping by trying to motivate you but it makes me see red tbh.

Re the change of diet . I tend to eat food with a low glycaemic index which maintains my energy levels throughout the day. Put simply stuff that takes longer to digest and is not over processed. So instead of 8 roast potaoes - I might have two and more veg instead so its not all bad. I have lost a lot of weight , although I have not set foot on the scales for years so I can't tell you how much. I also prefer my body with "sharp edges" :rotfl:My mood is less "spikey" too

You may find information online around "food and mood" I believe that is a MIND initiative ?? It sounds like you have had a tough time and that your self esteem has taken quite a bashing .

Cat501

too lacking in energy to say much at the moment, just want to echo everyone else and say look after yourself, and definitely apply for DLA with help - I got low rate care, hoped to get low rate mobility as well but didn't and didn't have the will to appeal it. As for ESA, it IS a joke, my appeal took 8 months and I got it, then I had another medical in November and got it straight away - if I'd known that I wasn't going to have to appeal ESA this time, I might have felt able to appeal DLA! Still, too late now, never mind!

People are right, nobody can really understand how debilitating constant fatigue can be. Good luck xxx

PixieDust

I just wanted to lend my support to you I have Asperger's and BiPolar, both of which have only been diagnosed in the last couple of years and so I am still getting used to my oddities having a name and to the meds for BiP which have had to be changed in the last 6 months. The BiP is def getting worse, and I have now given up work before they found a way to sack me for my unpredictability and long absences...they were doing nobody any good, least of all me. I can do a bit of batch cooking because sometimes I am bouncy like a Tigger on speed...but then I tend to overdo things which causes knock on effects. When I'm down...there's nothing...can't 'do', can't think, can't function. Side effects from the tablets give me muscle pain like I would never have believed, and the nature of the meds mean that I pile on weight in a most unfair manner...which makes the muscle pain harder to overcome...blah blah blah. And I rapid cycle too, so I can be up down and anywhere in between within hours! All good fun

You are not alone, and nobody thinks you are whingeing at all. you can only do your best babe I can also understand your hubby, too, if he's a bit Aspie....it's incredibly hard to think outside your set mindset for anything I'll stop waffling, now, but you are not alone

prepareathome

Good morning everyone.

I slept right through till 5.20am and pain meds are just kicking in now so can function a bit, although not got downstairs yet - I bought a teasmade in the summer and its made such a difference to me as can have my cuppas ( love my tea) while still stuck up here. I did try a kettle up here but don't have the low level space I need to use it and so got scalded a few times so gave up on that idea. Teasmade lives on top of a bookcase which is just the right height and only have to worry about pouring cold water in it, although it does sit on a towel as I have been known to miss the water opening in the top a few times lol

My plans for today are to do some batch cooking, fingers crossed. As I was not around to heat up the pie I bought in farmers market ( I know definately not OS but they looked so tasty I splashed out and bought a lamb and mint one) it will still be sitting in the fridge so we will have that for tonights tea, I supposed hubby would have opened a tin of meatballs and had beans with them last night, his alarm has just gone off so will ask him when he appears ( he is off out today as he plays Short Mat Bowls and Sundays are County Matches. He moved into the smaller bedroom in the summer as my ups and downs during the night were really affecting him and when he is on mornings he has to get up at 4.50am and it just wasn't fair on him. I stayed in big room as I have so much stuff in here - I call it my gilded cage - as basically all my belongings are in here so I can lay my hands on anything I want to do without having to go far. Its almost like living in a bedsit in my own house, but no couch just bed. Dogs live in here with me, they stay with me all the time, just popping down to see Daddy now and again and if they want to go out into garden. I feel so sorry for them that their life is so boring but I do not force them to spend all day with me they choose it. When I am awake they tend to live on the bed with me, although as yet today they are still in their own bed sleeping. That is except youngest ( not that young now she is 13) as I brought her up from a day old, her mum didn't want her and at first during day I carried her round in my bra and at night she slept in a shoe box on top of a hot water bottle covered in a lambs wool jumper and a cuddly dog with my smell on it, but once she reached about 3 weeks she started to climb out of it so came into bed with us to keep warm and since then our bed, is her bed. Just as well she is only a small JRT.

We really needed to go to SM yesterday evening, but as I was asleep I doubt hubby popped up there, as we have no fresh milk in the house, but do have some UHT. If I can manage it I will get a taxi up there later as need more food for pooches ( just wet food). If not we will survive on the UHT ( must be years since we ran out of fresh milk).. Mind you I have 2 cigs left - yes I know I should stop and I want to but at moment seems impossible ( yes I know an excuse and if I lose my money I will have to stop). Anyway will have to toddle across the road to buy some cigs from Newsagent, so might pick up some fresh milk from him, its just he charges so much more for it. Hubby does get my cigs a lot but if I feel up to it I will toddle across the road.

Ah bless him hubby just told me he actually did pop out and get milk from MR S just before it closed at 10pm. So might forget taxi to SM unless I really feel I want to go as have enough wet food for dogs for today. I am still on a high from getting out to Farmers Market yesterday on my own, it had been so, so long since gone anywhere on my own, apart from toddling across road to Newsagent ( that is across road and down side street - takes hubby 2 mins to walk there, me a fair bit longer).

Actually before I start any cooking I have to tidy living room as a friends daughter and her daughters are coming this afternoon, friend should have been with them, but she has hurt her back. Usually her daughter only comes with her, but she asked yesterday if they could still come which is so nice. This friend and her family have come to mine every year first for Christmas Day then Boxing Day since friend was widowed 26 years ago as they had no other family here and couldn't leave her on her own. When her daughter married, her husbands family had them over for Christmas Day so we changed it to Boxing Day for them, as they like me cannot imagine Christmas time without them coming now. Friends granddaughters ( 13,14) thankfully still enjoy coming here. Instead of a sit down meal as I used to do, past few years I have done a buffet as easier to manage so got to start preparing the food and freezing it so all ready just to be put on. I must get my Christmas bits out, I don't have much as we used to store the Christmas tree and decorations in the garden shed, and one year about 10 years ago it was broken into and the tree and decorations were taken, yet nothing else. So didn't bother replacing tree with another big one, instead I just buy a mini tree in a pot and try and keep it to put in ground in spring, only have one out there that is about 10ft tall now, did have another two far smaller, but a firm I paid to cut back hedges in back in summer wrecked the them and they died they dumped tools on them. So picked up my mini tree last week - its about 7 ins tall, usually do try and get one about 15ins high but none around, not even if Farmers Market. I also decided not to bother with lots of decorations, didn't have the heart with the old ones being stolen as they were so full of memories from when children were young. So each year since I buy a few Christmas type candlesticks or holder and put them out. Last week in charity shop I found nice glass tealight holder with wax berries all round stem for £1. Must also put my wreath on the door. Get the violins out, as my friend is actually my only friend I see now, all others have long given up on me.

So my list for today

Get myself out of this bed
Get washed and dressed
Go across the road
Tidy up living room
Make a start on batch cooking - spag bol, chilli beef, will see how it goes.

I have two slow cookers as i do love them as before them I couldn't say how many times I forgot I had something on the hob and it burnt.

I also think I need to make another loaf - I have a BM and I want to also make a fruit loaf, in fact if I put this on soon it can be ready for when friends come this afternoon.

I am sitting here with all these plans in my head but body doesn't want to oblige, I am not tired but could easily lie down and snuggle under covers again.........body just feels heavy and sluggish, but thankfully pain meds have taken most of the pain.

I could take more pain meds, doctor always on at me to do so and remove pain completely but as I explained to her if I do that, then I will become used to the pain meds and have to up the dose and don't want to so always have some pain but am still on the same dose I was on a year ago. Also more pain meds means being affected more in my mind and this dose is quite enough. I take Oxycondone ( slow release pain killer) 20mg in the morning, doctor wants me to take another 20 12 hrs later but I don't I just take Oxynorm 10mgs when I need to throughout the day if pain gets bad. Only snag with the Oxynorm is they last about 4hrs and when they wear off its suddenly and I could fall asleep. Doctor arranged for a to come pharmacist out to chat to me about them meds and she said what happens with the Oxynorm is quite common, they stop working so suddenly that is why I get hit with such tiredness, but it does pass usually so unless pain levels high I don't need to take more to keep me going, but she was quite happy with my use of them, and was able to put doctors mind at rest that I did understand them and how to use them to suit me.

Right instead of boring you all any more I am going to move, I am yes, here I go moving, ok still not got far but yes here I go going to climb out of this bed and go and get washed.

You don't need to read this but what I am going to do is write up what I can manage on here and maybe it will help me see what I actually have done, and encourage me to do more.

Hugs to each and every one of you, you will never know what your posts mean to me.

Thank you everyone

charlies-aunt

Great to hear that you have a plan prepareathome! - I'm a big believer in lists for everything and personally find that if I write a to-do-list in the evening for the next day I can sleep better because I'm not worried that I'm going to forget important stuff like appointments

I used to be a big clutter bug but I have spent the last few years slowly getting rid - ebaying, car booting, giving away donating and -shock horror :eek: - chucking in the bin. I still have lots of stuff to tackle but I am getting there

I had boxes and boxes of books but for me the solution was to get rid of them rather than buy bookcases to store them on to collect dust as I finally admitted to myself that I was unlikely to ever have the time, energy or inclination to re-read them. De-cluttering is a strangely liberating thing - I would highly recommend it.

Have a great day today - the first step is always the hardest

mardatha

I got right into the whole batch cooking/freezing thing because I thought it might help. even bought a freezer on Gumtree (sold the tumble dryer and put it in that space). But I found it was just giving me more hassle. I don't get stressed but I do tend to feel overwhelmed when I'm flattened, and the tiniest wee things look like mountains I found it was more work to get organised to do a batch cook then find things to put it in then freze it. And anything that went intot he second freezer fell into a black hole and never came out, cos I always forgot to defrost in time. So I sold the freezer back on Gumtree again and gave that plan up
I found that the best strategy is to chill out and stop trying so hard. Just chill and settle - few things are that urgent or dire that the world will end if we leave them. A tin of beans and slice of frozen toast will sustain life in an emergency

prepareathome

Well at the moment I give up........world could blow up but at this moment in time I don't care...........

Got up, washed and dressed and got across the road, it had been dry since I got up so put on jacket with no hood as it was so mild, still is out there, so of course as I am crossing road the heavens opened, but just carried on, and of course came back like a drowned rat. Got myself dry then starting putting the bits I bought away ( he is cheaper for certain things than SM) and was just reaching up to put a kitchen roll on top of over toilet shelves in downstairs loo when hubby walks into kitchen and pushes shut the door between kitchen and downstairs loo and back door. I had to hang on to door frame to keep my balance to reach up and my hand had slipped into door frame, so 4 fingers on left hand crushed - I let out a scream, he jumped and dropped his breakfast bowl and of course it broke. So fingers still throbbing an hour later but thankfully skin not even broken. So hubby kissing my hand saying sorry, as he didn't see me behind door ( you cannot get into kitchen properly without either having that inside back door as I call it fully open or closed as tumble dryer takes up most of the space, its a tiny kitchen) then he is running late so leaves me to sweep kitchen floor properly, he did pick all the pieces he could see. So throbbing hand aside I sweep up in case any small bits that could get into dogs paws. Then decide to get fruit loaf on, that goes well. Then decide to make a cup of tea and go to fridge for milk and find a disaster area. I had tried to make some microwave tablet ( someone posted on forum other day) but it won't set and hubby had not noticed when he put milk in he knocked the tin foil tray it was in and flattened and end of it so a lot of the sticky goo had run all over the fridge, so I take it out and my right hand does what it loves to do, opens and jerks yet I have no sensation of it doing so and so the sticky goo ends up all over the kitchen. So tea forgotten, fridge has now been cleaned - still needs another going over as of course the goo has harden on the sides and shelves of the fridge even though didn't in foil tray and floor, sides, hob cupboard doors have all been wiped and wiped and scraped. Everytime I think I have it all up I find more so I give up and have walked out of there before I do any more damage. Oh yes also managed to drop a bowl on glass shelf in fridge and both bowl and shelf cracked and a big triangle piece dropped out. When I get clumsy no matter how slow and how many deep breaths I take I just get clumsier and clumsier and as it was never me I hate it.

So nothing cooking apart from fruit loaf as the way I am at moment I will smash the slow cookers. I don't know if I will ever accept not having full control of my body, it just makes me feel so totally useless. Wouldn't dare touch laptop but it was still on and safely on the over bed table. Still not had a cup of tea as to frightened to use kettle I would most likely send boiling water over the dogs, me well I have had so many burns and scalds doubt body would be bothered with more. No bottled water left upstairs for teasmade and am waiting a bit before I dare fill the water jug for the teasmade up till I think hands will behave. Its just as well you cannot see this as I type, I have forcing hands to stay just in one place as have shut the laptop down or closed programmes and opened others and done all sorts before now when trying to type, fingers just press keys on their own and I just end up looking on as laptop goes mad, I couldn't tell you at all what has been pressed, sometimes it feels as it I am two people, me and someone else that uses my body when it feels like - did ask dr about that but she assured me no its just wrong signals coming from brain from the damaged areas making my hands or other parts of body do things. I keep copying what I type in case I delete.

Right did it put water in the jug and got it safely into the teasmade, but am feeling so tired now, concentrating so hard to keep hands doing what I want them to is so tiring.

Will have my cup of tea and try to relax and let the anger at myself go and try again - still got to tidy living room.

hugs

zzzLazyDaisy

Oh prepareathome it sounds like you have had heck of a day already! ((((hugs)))

Can I join the thread please? I have crohn's disease, spondylosis/degenerative disc disease (and a spinal injury from a car accident), fibro and diabetes.

I'd love to be OS - I have loads of great books about making soups and raw food meals, and I have an unused sewing machine and lots of great ideas for making things, and I have craft boxes full of stuff from my card making days sitting under a layer of dust...

In short, I am full of great creative, OS, ideas.... and then I leave my bed and go to the loo, and realise that my body isnt keeping up with my imagination....

Actually I am immuno compromised and got a chest infection a couple of weeks ago, so am really feeling fed up at the moment.

On the plus side - I have a wonderful friend who is also my carer (I refer to him as my lodger as I hate having to admit I need a carer!). He has made sure I'm fed and have enough drinks and generally keeps my spirits up. So I am really very lucky.

rising_from_the_ashes

rising_from_the_ashes wrote: »

I have Crohn's Disease, Ankylosing Spondylitis, Fibromyalgia, and a multitude of food intolerances, including being Lactose intolerant.

zzzLazyDaisy wrote: »

I have crohn's disease, spondylosis/degenerative disc disease (and a spinal injury from a car accident), fibro and diabetes.

Ohhhhh Daisy .... notice any similarities (though I'm very lucky not to have Diabetes).

Wish they'd do more research into the other conditions that seem to be associated with Crohn's.

I finally saw a rheumatologist earlier this year (after nagging doctor for about 4 years!) but he didn't unfortunately come up with any suggestions apart from to keep popping the painkillers (but there is a limit to how many you can take and I also find too many upsets the Crohn's). I was supposed to get a follow up at the end of this year but I've not heard anything from them so must put that on my "to do" list.


PAH (((hugs))) sounds like a bad day ....... ouch and hope the fingers are feeling a bit better now?


I also find lists wonderful - I am a natural worrier and think I'll forget things so write them all down. It also means I can pick things to tackle depending on how I feel on a particular day.