Does anyone find it really hard to pa... - Fibromyalgia Acti...

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Does anyone find it really hard to pace them selves?

Hols15 profile image
19 Replies

I am finding it really hard to learn to pace myself. I've cut my hours in work but find I end up doing more when I'm there after to busy days and a lot of time on my feet and running around I was in bed at 8 last night and could of stayed there all day but being a mum was up at the crack of dawn for the 1st of 2 school runs (next 1 in half hour) then off 2 work till 11 tonight. I know it sounds silly but because I don't look ill I feel like I can't say no because then people just think I'm lazy.

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Hols15 profile image
Hols15
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19 Replies
Fibrofoggiest profile image
Fibrofoggiest

Oh golly wow and how ??? I am the expert at not pacing, even though I've been trying for years ! I always think, just one more little bit, and then it's bang, into pain and off we go again. it does sound though from your post that you really are expecting quite a lot of yourself, I know it must be very hard being a mother and having a job - I understand what you say about not looking ill, but you are and it really doesn't matter what other people think......it's your health and your life, so if you have to cut back to improve your health then from where I stand I would say that is the most important thing. It will also allow you to be a really good mother to your children (not that I'm implying in any way at all that you are not, please don't think that,) but other people don't understand Fibro and you need to do what is best for you !!

Wishing you the very best :-)

Foggy x

jillylin profile image
jillylin

Pace is a four letter word that doesn't seem to be in my dictionary. I do try, honestly I do, but just can't manage it. Currently working with the lovely psychologist at the Pain clinic to find out why I have this need to drive myself the whole time to do things. If I get any tips I promise to share them.

Hugs

Jillyxx

in reply to jillylin

hi there- just wondering how you got psychologist intervention at pain clinic to help with the pacing issues

jillylin profile image
jillylin in reply to

My GP referred me to the pain clinic who put me on the Fibromyalgia management course. ASfter I had done this, we were all reaccessed and it was felt I need more support one to one so I am now working with the clinical psychologist. I have had some appointments and I was surprised just how badly I have been affected in the need to constantly push myself. It's looking like this help will be very good for me.

Hugs

Jillyxx

haribo36 profile image
haribo36

Oh my oh my,sounds like you could do with some practical help.Is there anyone who could help as it sounds as if you may well burn out.This is what happened to me,in the end I had to give up working then apply to social services for help as iam a single mum and have no support.I now have two carers to help me which is a godsend as I struggled to do the school runs and everything else that comes with being a mum.You may not look ill but you are and you mustn't worry about peeps thinking you are lazy as YOU ARE NOT lazy,you have an illness.I used to think like that but in the end that thinking is causing harm to your health as you are pushing yourself to be that superwomen which for someone with fibro is not really achievable.Hope you don't mind me saying all this but I wouldn't want you to end up like I did,which was downright miserable and totally exhausted to the point where I couldn't function properly and I wasn't the best mum I could be for my kids x

Zosie profile image
Zosie

Hi Hols, I relate to what you say about it being an issue because there are no obvious signs that tell others we are ill. I've started a shock approach on family - for example, when my brother in law asked if I was ok I said I've been struggling. He said you should have come out with us the other night. I said, I wouldn't have been great company as I couldn't walk properly that night.

That got a wow and a shocked face from him.

If people can't see it, tell them! I didn't ask for sympathy nor did he feel the need to give it...I think he started to see how things are for me. I also told him, I don't like people to see me like that - have you tried that sort of approach?

You are managing to keep doing a lot, which is impressive and it's wise of you to recognise the need for rest by your going to bed early last night.

Keep in touch and take care

Xoxoxo

Mazz64 profile image
Mazz64

I have a real problem with pacing myself (still do at times) that was before I was diagnosed. I was a single mum, worked, going to college and all the things that come with it, I was also a bit OCD with my home, so no matter how bad I felt I carried on, I have so many test I was thinking it was all in my mind. after moving in July 2008 I redecorated my home as well as all the other stuff, I ended up having a stroke in the December, I had to stop my college course, but carried on working until I could not even get out of the house because of the pain and fatigue, I was diagnosed with Fibro and because I looked well i'm sure people thought I was making it up at that point I didn't care what people think. if I'm having an ok day I still do far too much. Please try and get some help and rest as much as you can I know that's difficult with kids but do ask for help.

Hugs

Maz

CryBaby profile image
CryBaby

Hi Hols, I agree with what's already been said. It's not easy, but one day / hour / minute at a time. I still really battle to pace myself and suffer for it, as I'm sure you do too. I also work part time and do WAY more hours than I should do. I think for many of us this lack of pacing 1) got us into this Fibro thing to a large extent and 2) is what makes us think that we always need to do just one mire little thing.

Ask yourself - if it was one of your children pushing themself so hard (to the point if pain, misery, frustration and a little bit if madness) what would your advise be to them? Write your answer down as if in a letter to them, but write your name on it. Keep it with you and read it at lunchtimes or tea, etc. It should give you a nudge to slow down.

Also - set an alarm on your phone for when to leave work. I set it for half an hour before, so I know I only have half an hour to finish that "really important last thing".

Be kind to yourself - your children want to learn how to be kind to themselves. What do they see when they look at how you push yourself? No lecture - I'm guilty of it too!

You're not alone in this either.

xxx CB xxx

Ginsing profile image
Ginsing

You read all about pacing and understand the reasoning behind it however, when it comes to my own - pacing - I try some times it seems to be working and then like today I have no available energy to even think of it.. Sorry bad morning this morning my vision is playing up I will be retreating to bed air non. xgins

in reply to Ginsing

I can see already that I am going to learn a lot from you ladies.

Never have I been taught to pace. I always keep going until

I practically pass out. I had a few days that I was a bum all

day long..didn't do anything at all including shower because

I had zero energy and a family to take care of.

Lucyhobbit profile image
Lucyhobbit

I am totally useless at pacing, in fact last week I was asking the same question as you. My problem is that I don't think I'm overdoing things until I have already overdone things and am in agony.

I am lucky that my fibro, whilst horrendous, is not as severe as many people here, but when I've overdone it boy do I know about it! I am now trying to remember what counted as overdoing it and next time do slightly less of it.

phlebo123 profile image
phlebo123

Hi hols,

When I first started "pacing" I kept a daily diary and listed everything I did, so I was aware of how much I was trying to do.

By using this diary I have learnt to stick to a certain daily routine that my body is "happy with". I now work part time (12 hours a week) and vary my activities to include a variety of things... a little housework, a little gentle exercise (short walk, yoga, swimming) and a little rest.

I now "plan" my days carefully.... sometimes it changes if an emergency arises.

I also have a "school run" with my daughter... but I now share it with my neighbour , whose son goes to same school as my daughter, do you know someone you could share with?

Good luck with the pacing xx

phlebo123 profile image
phlebo123

Hi again!

Forgot to say.... Don't be afraid to ask for help.... remember you are not superwoman!! Family and friends have grown to expect that you will do everything they ask..... I have always had a problem with saying "no" when others ask me to do things... delegate tasks to others... are your children old enough to help with small things? Get them involved!!

I found this article called the Pain Toolkit very useful in learning to pace.... there is a print off booklet on paintoolkit.org which helps explain pain self management. Xx

Lruk profile image
Lruk

Absolutely 100%! I have only recently had a diagnosis, as in the last few weeks, but I think that was because I had pushed myself to the absolute limit of what my body could handle. I was working full time but in so much pain that my boss has drastically reduced my workload but I was still struggling. It was only when I realised that I was actually a hazard to those around me because I was hardly able to walk, in constant severe pain, totally miserable and taking way too many painkillers to be able to drive to work and back safely that I gave in and asked to be signed off work. For the first week I was off I slept! Now I am gradually working out what levels of pain relief I need when I do very little and once I have that established I will be upping what I can do and the pain relief to manage it very gradually with a view to going back to work eventually. My doctor thinks that this is a realistic aim, I am not so sure at this stage. I am lucky as all my children are grown up and no longer live with me so I don't have to worry about them too much but my job as a primary school learning support teacher is fairly demanding, I think it would be a bit easier if I was just in one class all day but that isn't likely to happen. In saying that I love my job and will be devastated if I have to give it up but my family and my health are the most important things. It is hard to cut back on what you are doing if you think you are letting people down but when you think about how your family would cope if you were unable to do even the basic things for them, it makes a bit easier to begin to say no to other people's demands.

Hols15 profile image
Hols15

Thank you everyone for your advice. Been having a bad day today after 3 busy days at work been sleeping most of the day. I'm hoping that when I finally go to the fibro clinic they might help so will keep u all posted xx

in reply to Hols15

welshladyj has been sleeping too all day. haha..You two will

have to get up and play some cards or checkers later. =DD.

It's all part of fibro..and the rest of the little junk..Do they ever

give you some kind of steroid? I get them for my RA and then

I get very high energy days. Later on, I always pay the piper.

You know how that goes. My doctor didn't tell me what treatments

I am going to get just yet..I have another appointment in 2 wks.

mub40 profile image
mub40

My Occupational Therapist has been helping me to learn to pace for over 12 months.I listen and learn but when she has gone all good intentions go out the window.I cannot leave anything half finished which I am supposed to do.

welshladyj profile image
welshladyj

very difficult if you get an ok day try and get everything done to make u for the bad days, and then oh dear back to square 1 and bed and rest again. its so hard the feeling of guilt you get when you cant do things.

welshladyj those days are going to happen. Rest is heavenly when the body

hurts and exhaustion is there. It's 100% necessary and prescribed now by me

so don't feel guilty at all..haha. It's all part of this fun little fibro..=)

You will have this pass and then you will make up for lost time.

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