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Struggling with guilt

Elaine200756 profile image
81 Replies

I really struggle with guilt because I can't cope with the house work. Does anyone have any suggestions?

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Elaine200756 profile image
Elaine200756
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81 Replies
SnazzyD profile image
SnazzyD

Hello, I hope this doesn’t seem like a cop out, but what would you say to someone with your problem?

Elaine200756 profile image
Elaine200756 in reply to SnazzyD

Hi SnazzyD, I would have to say that the guilt doesn't help. It just causes a vicious circle of guilt + stress = more pain. But I just don't know how to stop it

SnazzyD profile image
SnazzyD in reply to Elaine200756

Indeed, it’s worth writing down what that inner voice says exactly when you don’t do these tasks. It’s probably not your voice either and may come from what you’ve heard from others in the past. I suspect you wouldn’t say those things to others in your position but it’s worth looking it to understand why it has such a hold on you.

Elaine200756 profile image
Elaine200756 in reply to SnazzyD

So true! Now you mention it, I know where its coming from. Thank you 😊

SnazzyD profile image
SnazzyD in reply to Elaine200756

Half the battle done! Next task is not taking any notice of it because I doubt it belongs in your life as it is now if it ever did. Now, I do get the frustration of not being able to do what you did before but I’m sure you’re doing what you can.I coped by doing one small bit well each day.

Elaine200756 profile image
Elaine200756 in reply to SnazzyD

Brilliant! I guess it's looking at it in a different way and changing what you see as doing well 🥰

SnazzyD profile image
SnazzyD in reply to Elaine200756

We all need an inner marketing department!

in reply to SnazzyD

I love this exchange 🥰

in reply to

Me too❤️

Dizzytwo profile image
DizzytwoModerator

Hi there Elaine, just wanted to make sure you were aware you could lock your posts to this community only.

If you want to lock your posts the link below will show you how.

healthunlocked.com/fibromya...

Locked post tend to get more replies for obvious reasons 😊

Sadly many people with chronic illness feel the same way. Unfortunately only we know what we deal with in our homes and relationships on a daily basis.

All I know for me personally after 40yrs of suffering with fibro and other health issues I no longer feel the guilt.

To deal with chronic long term illness I made up my mind I needed to put me first for a change. If others found that to be selfish so be it.

I no longer beat myself up for the things I can't do. But love myself for the things I can xx

Elaine200756 profile image
Elaine200756 in reply to Dizzytwo

That's wonderful and thank you for the information on locking my posts 😊

DJK99 profile image
DJK99

Hello Elaine. Well, I can totally empathise, as can everyone with this sort of condition I’ll bet. Personally, I let it ride mostly. I’ll bet it’s not that bad… but even if it’s 10 feet deep in dust, the world will keep revolving, eh? If you were brought up by parents/carers that felt house cleanliness/looking as best as poss was a hugely important thing in their lives… or even got treated badly if they didn’t keep it up… well, you’ll have taken that on. But you’re you.. with your own needs.

Maybe pay for a cleaner once in a while? Or have you a mate/family that could help out? I get it… I won’t ask for help unless recovering from an op or treatment.

If you can do a little then maybe just do a little in one room one day and then another a few days later ie instead of looking at the whole place and drowning in overwhelming.. guilt and exhaustion.

All that being said… I get it!

Hope that helps a little. D

Elaine200756 profile image
Elaine200756 in reply to DJK99

It really helps knowing that I'm understood and not alone. Much appreciated, thank you DJK99 😊

Nothing_but_books profile image
Nothing_but_books in reply to Elaine200756

Oh, you're not alone. I struggle with this every day.

Woodhouse16 profile image
Woodhouse16 in reply to Nothing_but_books

Me too

Farmerboy profile image
Farmerboy

So you can’t do the housework as you used to do. We all now find that months after we have been disabled are having to accept that we can’t do the things we use to do. Be it the gardening or housework, what’s the issue you can’t do any full stop or only a little of what you would normally do. If it’s the latter then break up the tasks to must be done and if I have time or feel the need. For example I must keep the kitchen clean for preparing food ect , do a daily clean the same with the bathroom then give each other room a day that you will clean hover or what ever stick to this and if you don’t feel able miss a day and focus on your main areas the kitchen. My concern was the garden but now my wife or daughters mow the lawn prune the bushes ect frustrating at first but I knew my limits and just accept I can’t do it any more. So don’t feel guilty if a friend or visitors may be able to hover where and when needed.

Dinkie profile image
Dinkie

Don't ever feel guilty about it, the world won't end, do what you can when you can. I have asked for gardening/cleaning vouchers for presents. Now I have someone come to do the garden for half an hour, which is all it needs, once a month and someone to come and clean the oven, and for my next birthday my son will get me some vouchers for a local cleaning company so they can come and do what grandma used to call "a bottoming"(a top to bottom spring clean!) Problem solved or well almost.

Elaine200756 profile image
Elaine200756 in reply to Dinkie

Thank you Dinkie, that's a great idea 😊

honeybug profile image
honeybug in reply to Dinkie

👏💋👏😍🙏🌸

Dinkie profile image
Dinkie in reply to honeybug

Hi dearest honeybug - lovely to see you on-line again.

honeybug profile image
honeybug in reply to Dinkie

Thanks Dink 🥰. Sooooo happy to hear from you too hun. Luv ya bunches sweetie. 😍

EJ ♥️🙏🕊

cazanne1 profile image
cazanne1 in reply to Dinkie

What a great idea!

Dinkie profile image
Dinkie

If you really want to amuse yourself - just put up a few Get Well Soon cards and use that as an excuse😂🤣😂

Elaine200756 profile image
Elaine200756 in reply to Dinkie

😂😂😂

honeybug profile image
honeybug in reply to Dinkie

😂🤣😂🤣😂🤣👏👏👏

golly123 profile image
golly123

Hi. Don't feel guilty. My house is a tip. I live on my own. My son visits but he recently fractured his arm so he can't drive at the minute. I just do manageable bits here and there. Even if I had a husband or partner, tough. I do what I can when I can. I try to make sure the sink and toilet are clean. Also try to keep up with the washing up. There isn't much as I don't really cook anymore. Even when I do cook, which is rare, I do it in stages. Pace myself out. No need to feel guilty at all! Ever on this, in my humble opinion. Best wishes Golly

Elaine200756 profile image
Elaine200756 in reply to golly123

Aww, thank you Golly123. I'm going to try to do the same 😊

oldwomaninpain profile image
oldwomaninpain

I had to concede I could no longer cope, I live alone with my furbabies. I have a nice lady comes in for an hour or so every week to keep my bathroom and kitchen clean. She does next door too so it's convenient for both of us. I potter doing the other rooms myself but not that often and certainly not all at once. My house is untidy but so what...! I have not had any other visitors in the house except a couple of workmen since mid 2019, mostly due to Covid!! I also have a nice young lad pop in once a month to keep on top of the weeds and pruning

Do I feel guilty or ashamed? Only when my chum tells me that she manages all her own housework and gardening, but only very briefly, she has a husband who does most of it for her while she sits in her recliner barking orders LOL. Poor man, he is starting to look worn out

Look after yourself

Ann xx

honeybug profile image
honeybug in reply to oldwomaninpain

👏👏👏🤗♥️🥰🙏🕊🤝❤️‍🩹😍

Elaine200756 profile image
Elaine200756 in reply to oldwomaninpain

I'm really glad you've found a way that works for you. I'm not coping but I have some thinking about the way forward. Thank you 🥰

Arymretep profile image
Arymretep

I find doing one room at a time suits me, as long as I make sure the bathroom. And kitchen are clean and tidy every day, that keeps everything under control.

Elaine200756 profile image
Elaine200756 in reply to Arymretep

I can probably clean half of the bathroom and then the rest the following day 🤗

onebigvoice profile image
onebigvoice

My daughter has this problem.... This is why your family members or partners should see that the person you now see is NOT the same person as before and go round a visit on a regular basis for a cup of tea and a chin wag, and while tea is being made and asking how they are today, maybe wash a few plates in the sink. JJust do it don't ask, tidy the kitchen breakfast plates still out or when watching TV pick up a vacuum. Some resistance? I don't mind helping if it get you time to relax and take a break, or not doo the school run. In silence life still goes on, you can't explain to someone that does no longer want to be here. You have to show that they do have worth and will be missed not just as a cleaner but someone who is part of a family.

Hi Elaine200756Morming, I am sorry you are suffering with guilt. Guilt in itself is one of the thing some of us suffer from whether there is something to be guilty about or not. I wake up in the morning filling guilty and then I wonder what I have done to feel like this. In the past I would then look for a reason to justify it. And I always found it. Recently, I have been feeling guilty about something that happened in 2016, something silly.

So in going forward, you might want to ask yourself, is this real guilt or is FM playing games with my mind? Then consider planning your day. What is it that I have to do, what can be put off. I have learnt to live in a house that is not sparkingling. I rarely have a whole house cleaning. I clean things when I notice them, I don't let dishes pile, I wash whatever I have used emmidiately. I hope this is helpful and have a lovely day.

Elaine200756 profile image
Elaine200756 in reply to

Aww, thank you 🤗

I just do what I can when I can. But i do find myself feeling guilty if i don't keep on top of washing or keep the fridge stocked ect. (My teenage son complains the most about this!) But I do my best. What else can I do? You almost have to surrender part of yourself to fibro. Try not to be too hard on yourself though. Do you live alone? Xx

Elaine200756 profile image
Elaine200756 in reply to

I have a husband and he says if I ask he will do what I ask him to do. But he spends a lot of time in the garden during Spring and Summer, so I don't like to ask. And you do get fed up with asking every little thing 😔

in reply to Elaine200756

I totally understand xx

Elaine200756 profile image
Elaine200756 in reply to

🤗

Christinepr profile image
Christinepr

I was exactly the same and there is only two of us in a small two bed bungalow. Fortunately we managed to get a cleaner once a week but the guilt still lingers.

Elaine200756 profile image
Elaine200756 in reply to Christinepr

So sorry to hear that you are still struggling with the guilt. It's horrible. I think there's an expectation that unless you have something like a visible illness or disability then you should be able to keep up with house work 🤗

JCRF profile image
JCRF

I know how the guilt feels and the best present my daughter brought me was a robotic vacuum not as expensive as you my think you will be surprised how much it picks up on carpet and hard floors.The rest of cleaning is when I can.

Take care and don't be so hard on yours

Elaine200756 profile image
Elaine200756 in reply to JCRF

That sounds awesome JCRF 😀

Charr53 profile image
Charr53

Hi there, I feel the same I was very independent and I still try do what I can, pace yourself, take things slow. The people around you should understand and support you so that guilt can be lifted a bit. I have learnt that trying to do what I could 7 years ago came to an end very fast, I try hard but its not worth the pain, fatigue and suffering that comes with it. So I rest , I pace myself and I have my family who understand. Love and support and understanding are key factors here.. I hope this helps you!

Elaine200756 profile image
Elaine200756 in reply to Charr53

Thank you Charr it does help 😊

Al10 profile image
Al10

Hi Elaine200756, Your question made me smile. To guilt, I like to add, embarrassment, shame, disgust even; Those thoughts all like to jump on me from time to time. I should do better, shouldn't I? And do better curbing my 'mean to me' thoughts. A better person would keep a tidy clean house and not beat themselves up over their failings either. Grr, is there no end to my failings? 😖😰

But who made these, never to be broken (without guilt) laws? Why did we so willing, buy into them?

I try to keep the worst of the yuck down to copeable. A little wipe here and there. A light vacuum cleaner to do a bit of the floor as I'm able, that sort of caper. And then, having done what I can, (else I'll be living in a compost heap rotting, ew!!) I do things that inspire me. Something creative usually. (Each to their own. ) Something that takes me out of myself and maybe, if I'm lucky something that makes me smile after. Be proud even?

Then despite any (more) muddle I've made, I can say, But I had fun today.

Elaine200756 profile image
Elaine200756 in reply to Al10

Thank you Al that sounds great 😊

Wobblygirl profile image
Wobblygirl

I do understand...I am lucky enough to afford a cleaner every few wks which is a major bonus to keep place tidy+hygienic. She has to do hoovering and bed changing for me as they are beyond my capabilities. I ask her to do high jobs and low ones where I can't reach or bend...

I cope by doing corners every now and again!!! Even a cleaner can't do everything to yr standards???

I ask her to remove everything from a corner to wash/clean it thoroughly and then leaves me to sort out what will go back! For yrs before I had a cleaner I let everything pile up and there's an awful lot of 'cr*p' from yrs ago to sort... I let 2rooms become dumping grounds so that's how bad it was! Losing yr home to clutter is extremely sad+difficult to live with...

Now the place is cleaner I am gradually throwing stuff away. Far too much debris! Mainly paperwork, and clothes I no longer wear... It's very dispiriting using any energy for wading through this sort of activity so I can only do a very short burst. The self-loathing that I got into this state is heartbreaking for me as it never seems to look any different.

However I hv a full charity bag ready to go... one day it may be sorted???

Good luck with yr endeavours Wx

k77a profile image
k77a in reply to Wobblygirl

Yes true even a cleaner can't do everything to your standards , had my brother come & he did an ok job.

But he left alot of the work that l had to sort afterwards!

l got a price for a deep clean at £150 , so l decided nah 🤣

Elaine200756 profile image
Elaine200756 in reply to Wobblygirl

Thank you, I've been struggling and I am thinking about getting a cleaner in, it would really help to make life easier 😊

Elaine200756 profile image
Elaine200756 in reply to Wobblygirl

Thank you 🤗

Wobblygirl profile image
Wobblygirl

I have to add that having looked forward to the warmer weather my tiny garden has become another area of guilt now...It's never-ending isn't it?

Not sure my cleaner would appreciate clearing the garden too??? XxX

Elaine200756 profile image
Elaine200756 in reply to Wobblygirl

I just wonder if it goes with the territory of having fibromyalgia 🤗

Wobblygirl profile image
Wobblygirl in reply to Elaine200756

I do acknowledge I was a high achiever type in my attack on life... I worked hard (too hard) and expected high standards of myself so I think now physically disabled I still think about reaching the same high standards???

I am my own worst critic and a drop in standards regarding home cleanliness, appearance etc really does trouble me constantly...It feels very vain of me to worry so much about these superficial issues but guilt is guilt!!! Maybe it was drilled into me as a child?

All I know is it leads to mental illness for me when these standards drop.

I hate it!

I've suffered depression for many many years which in its turn creates fatigue, low motivation and self loathing...

I believe it is the way I perceive myself (against standards from somewhere in my past???) that has led to this guilt. Not sure fibro has contributed at all!

My self-loathing is deep indeed!

My aim to keep home fairly sorted+hygienic helps my mental well being. My appearance too needs support! I admit it's a slippery slope to juggle all these issues with fibro...

I wish there was more NHS support for the emotional impact of fibromyalgia + the impact of disability when we are in so much pain+discomfort???

Pain magnifies so many implications to breaking point!!!

in reply to Wobblygirl

Oh my goodness. Same! It's like, I have fibro...but I have ocd too and they fight with eachother. Like the angel and the devil on ur shoulder. Ocd makes me clean even wen I'm close to tears with pain or Exhaustion but fibro can put me to bed for days then my ocd side suffers. I cannot win xx

Elaine200756 profile image
Elaine200756 in reply to

Take care Noob 😥

Wobblygirl profile image
Wobblygirl in reply to

Bless you, that's really hard?

in reply to Wobblygirl

It really is. I'm learning to balance but it's hard if you feel guilty for falling behind in the usual chores!

CheetieCat profile image
CheetieCat

Hi Elaine, really not surprised you've had so many replies to this one! I know most of us feel this way at some point, I certainly do.

Breaking everything down into smaller pieces works best for me, at work and at home. I try to pace out my day with little rest periods, like tasks that can be completed sitting down while having a cuppa in between the bigger tasks if that makes sense. Doesn't always work though, still struggle with pacing especially at work.

If I look at everything that I Know I need to do it's just too much, it totally overwhelms me and then the negative feelings start to kick in. It's like bashing yourself over the head with a massive club, pointless and you actually get nothing done because you're so busy telling yourself how crap you are!

So my advice would be, do a little when you can, stop before you have to and have a rest then maybe do a little more. Pace yourself, easy to say but much harder to do! Focus on what you've done not what you haven't because there's always tomorrow or the day after. x

Elaine200756 profile image
Elaine200756 in reply to CheetieCat

Wow! You describe exactly how I feel CheetieCat. Overwhelmed and beating myself up. I think pacing is a good idea and focusing on what I achieve, even if they are very small things 😊

in reply to Elaine200756

My friend said today to write down everything u do. Even the small things. So u can look back and go, yeah I achieved something. Even if it wasn't everything u should have done. You did what u could xx

I can't give you the link because it contains a four-letter word that's a no-no here, but if you search:

un (the "f" word) your habitat AND "chronic pain tips" you'll find a page with lots of hints.

If you haven't seen "FLYLady" yet, you might find some help there too. The e-mails are relentless, but you can use her site without signing up.

Elaine200756 profile image
Elaine200756 in reply to Nothing_but_books

Thank you Nothing_but_pain sounds great 👌🤗

denny_the_wench profile image
denny_the_wench

Quentin Crisp famously said — 'There is no need to do any housework at all. After the first four years the dirt doesn't get any worse.'

Quite honestly I can agree with him - there are things I can do, and things I can't. I do what I can.I have a clean sink, toilets, clothes, bedding and plates and the area I cook in is hygienic.

There are spider webs where I can't reach them (everyone needs a home!) and dust on the skirting boards under my office table (who is going to go on their knees to look?) and I've not been in the cupboard above the fridge in six years (it's a closed-door so dust can't get in... right??)

I have a dishwasher - if the plates are not clean the first time I put them through again (cheaper on electric & water and definitely not worth stressing over)

If people come to visit - have they come to see me or my house? if it's the latter then in future I'm just not in for them!

Hugs to all that struggle with this issue - it is not worth it! we do not have to be superwomen all the time!

Elaine200756 profile image
Elaine200756 in reply to denny_the_wench

😂 Aww, bless you and thank you denny 🤗

saj01 profile image
saj01

Hi Elaine Without knowing your personal situation it's hard to understand the 'guilt' you feel. Or what your home situation is. It sounds to me as though there's an element of depression?

But please don't beat yourself up about something you can't do like you used to.

Things have changed for you. and your priorities have had to change....it's a catch 22.

I'm sure we all can say the same about ourselves.

I don't like the change but what alternative is there.? I do what I can, when I'm able... the rest has to wait until a day when I feel more able to do things and then I have to be realistic about what I can achieve.... 9 times out of 10 it's small manageable chunks. I say I, because there is no one else.

On slightly better days, I tell myself... I can do this or that... sometimes I get cross with myself and say, stop fannying around and just do it!

If I don't finish it, no one is going to string me up by my thumbs - does it really matter if everything is not how it used to be at home?... no, not really.

Be kind to yourself....

Elaine200756 profile image
Elaine200756 in reply to saj01

Thank you saj, I'm sure it's partly about depression and partly letting go and accepting that, no matter what other people think, I am ill.

I feel sad as the pain seems to be getting worse, where I had been able to cope with the level of pain I had a few months ago. Now it's all hot water bottles and pain killers. I need to accept that this is how it is now. Same for a lot of us, but it is sad 😥

saj01 profile image
saj01 in reply to Elaine200756

Hi ElaineSorry you are going through a bad spell. It's a horrid thing to have. I get bad spells and somedays I'm 'almost' okay for a few hours. It does go in peaks & throughs. Somedays, my mood is really low, but I've resisted asking my gp for antidepressants so far.

I found that increasing my daily amount of magnesium does help the pain, although too much can have a laxative effect. A lot of websites recommend mag glycinate. Personally I take mag malate in powder form, but that's just my choice, then I can determine how much I take, rather than what's in a tablet etc.. If you're not already supplementing with magmesium it's worth a try. ... as are epsom salts baths- provided you can get in and out of a bath on a bad day, I can't!! If not, try foot baths, not sure if that would do much..

When you are in constant pain, you are bound to feel depressed.

If you are a tea drinker, and like green tea, that's a good source of l-theanine, which again is supposed to help some of the fibro symptoms when drunk or taken in moderation or you can take a supplement. I go for the decaf version otherwise I'm in and out of the bathroom..

Take care and be kind to yourself.

Elaine200756 profile image
Elaine200756 in reply to saj01

Thank you so much for your kindness and the tips. I've got some magnesium supplements and Epsom Salts. They have helped with my sleep, which is a bonus. I think I have to remember that it won't always be this bad. It's so good to have understanding and support. Bless you 🤗

onebigvoice profile image
onebigvoice

Why should you suffer from guilt? There is no need to impress anyone. If you can "clean up" or wash plates when you use them then do so, but getting stressed over a plate not being cleaned? Leave it to soak and do it when you feel able. Got more than one plate, then when looking for a clean plate think I do the ones in the sink now so that by the time a meal is ready they are drained and need a small wipe, and put the rest away. No drama....

Elaine200756 profile image
Elaine200756 in reply to onebigvoice

Thank you, I'm beginning to understand that I can't always complete a task but can do it in pieces, doing a little bit then coming back to it and doing a bit more. Thank you for your response and for caring

Frenchi88 profile image
Frenchi88

Hey Elaine200756I have similar feelings as you do. I feel tired (as we all know constantly) but when I do, I look back at my day and think how can I warrant being tired when I've done nothing or very little and then feel guilt because I feel lazy and very un-justified having the rest I sooo crave , and mostly again as we all know the rest doesn't make us feel any less tired so that in itslef makes me feel lazy because the tiredness will always be there and resting is pointless. I have this daily and daily I fight with it. I'm sorry you feel this way but as SnazzyD says you'd be the first to tell someone it's not right. I can't give you any additional advice because we're in the same 🚣‍♀️ . So as Sunday is THE DAY OF REST let's hope that we can today !!! 🙏

Elaine200756 profile image
Elaine200756 in reply to Frenchi88

I hope you will be able to get some rest today French. Let's say no to guilt and self condemnation 🤗 🕊️

Hi Elaine, I struggle with this too. My husband will help but I hate asking and if he does it without asking then I feel lazy as well as guilty!

I really try not to but it's not easy. I do little bits when I can and keep what can be seen clean, especially kitchen and bathroom.

My guilt is partly having fibromyalgia and other health issues none that can be seen, mostly I look fine!

I sometimes tell myself I deserve to rest but then feel bad and tell myself I should do more 😩

That guilt goes back to my childhood...

What I do now is try to tell my negative self talker to keep quiet and work on my positive.

If I do what I can it's enough, I pace, take breaks and take an afternoon nap most days.

I toss up between hoover, short walk or gentle exercises and mostly now let what benefits me win, which certainly isn't the hoover😂😂

I don't have OCD but was told by a therapist years ago that I have OCD tendencies.

When things are neat clean and tidy, then all is right with the world, when it isn't everything is wrong!

I'm getting better at it.

Thanks for posting this issue and judging by the replies we are certainly not alone😚

Elaine200756 profile image
Elaine200756 in reply to

So true VeronicaTherese, and good for you, telling those negative voices to be quiet 😊

wiserlady profile image
wiserlady

We are the same age Elaine, I just read the replies here, thank god I did not see some silly suggestion about paying a cleaner to come in. Fine if you are rich maybe. Or move into a smaller place (what a ridiculous thing to suggest with mobility problems, pain and lack of energy). That task would be far more daunting and difficult than doing the housework. But am sure you would have thought of it yourself then. I have a lot of housework to do so my way is to rotate the chores, I might say do this and this every monday, this and that every tuesday, if I get a great day where I have good energy and am not busy with work I do some of tomorrow's chores too so I can spread them out more. If I get a few very bad days I push them back or say they wait till this time next week. I make sure we cut down on chores anyway, won't buy clothes that need ironing. Change the bed every two weeks instead of once a week.Always make sure we keep windows and doors closed if possible so there is less dust.

Tidy up bit by bit as we go along. Hope some of that helps!

Elaine200756 profile image
Elaine200756 in reply to wiserlady

Yes thank you wiserlady. I change the bed every 2 weeks instead of weekly as I used to do, like yourself. One of the best things I have learnt is letting go of guilt and putting pressure on myself. Take care x

Dressy profile image
Dressy

Elaine, I am new on here, but your post absolutely struck a chord with me. I really want my house to be clean and tidy, with two sons and a husband to clean up after I find it all too overwhelming. I have had fibro for 5 years and the pain is constant. I wake up on a morning (when I have managed to sleep a few hours!) and just think about everything I need to do. I work 3 days a week but this is becoming more difficult as Sometimes I can hardly move with the pain. I am in a mess with my meds and haven’t seen a rheumatologist for nearly a year. The GP gave me tramadol as my pain was so unbearable but now I am worried I won’t be able to come off it, and I’m not sure it helps that much. I don’t want to give up but finding it so hard to deal with. To clean a bathroom I have to psych myself up and then it wipes me out completely. My husband doesn’t understand and just keeps saying I need to get a second opinion. I keep telling him that there is no cure but he won’t accept that! It is such a relief to read all your posts and see there are people out there like me.

Elaine200756 profile image
Elaine200756 in reply to Dressy

Hi Dressy, and welcome. I totally relate to all you say, bless you. I'm glad my post helped you. I think the most important thing I've learnt on here is to listen to my body and what it needs and respond to this. It's so much more important than listening to those around you who don't have a clue what you are suffering.

I also practice pacing. I don't know if you've done this? If so please ignore the information. The idea of pacing is to stop the "boom and bust" phenomenon you get with chronic illness. This is where you overdo things on a good day and then bust and suffer for a couple of days after. On bad days you don't do anything. It's to get you to a point where you can function whether it's a good day or a bad one.

You pick a baseline for the amount of activity you can do, maybe 5 minutes at first. Then you rest for 30 minutes. If all goes well then you can increase the time to 10 minutes and 30 minutes rest and so on.

You can do a surprising amount in 5 minutes and you feel like you are achieving something. If you increase the time and you have a flare up or think you've done too much then just take the time down.

I had managed to get to 20 minutes activity but felt I'd gone to far with the time. I was reacting as if I'd overdone it, so I went back to 10 minutes activity and 30 minutes rest.

As I said, you may know all this but if not I hope its useful for you xx

Dressy profile image
Dressy

Hi Elaine, thank you for that, I will try pacing, I have noticed that when I overdo things I am wiped out and stay in bed the next day if possible, but then the day after quite often I don’t seem as bad. I was always such an active person and never stopped until I got into bed at night! It is so good to find others experiencing the same things and understand what it is like! Xx

Elaine200756 profile image
Elaine200756 in reply to Dressy

You're so welcome, bless you Dressy. It's very hard to find a balance but pacing really helps. Also, I was taught on here to let go of guilt and shame. As someone said to me, what have you got to feel guilty for.

Really hope it works for you. Take care 🤗

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