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Probably a daft one but needing advice...

DreamingHeathen profile image
20 Replies

How does one pace themselves? I've had this Neuro Fibro/CFS/M.E. crap for nearly 6 years and I still don't know how to pace myself.

I have days and I'm sure we all do, where I'm so tired that I don't put any effort into doing very much and then I regret it because perhaps I could have pushed myself (Like today I was meant to go to uni but because my right side decided it wouldn't play ball I decided not to go, on reflection if I'd pushed myself perhaps I could have.)

Then I have days where I feel on top of the freaking world and I run around like a lunatic because even though I know I'm not well, a little voice inside my head tells me to push myself further because apparently I can take it..then I wonder why I'm in my bed for days.

Can someone PLEASE advise me on a happy medium, I'm tired of feeling like a crazy lady because evidently listening to my body clashes with my brain....

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DreamingHeathen profile image
DreamingHeathen
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20 Replies
Butterfly54 profile image
Butterfly54

I find it`s day at aa time hun,if you push too hard on a good day of coarse you will end up in a mess.I go by this,

Plan, proratise and pace.Pace being do a bit but when body says stop STOP.

Put bum in chair have a cuppa and when it passes start again,I know this make this last twice as long but it might mean you can go on to doing things the same way tomorrow.

Hope this helps Butterfly54:-)

DreamingHeathen profile image
DreamingHeathen

Thank you :) It really does help having someone tell me...sadly I'm yet to hear "stop" on a good day...

Butterfly54 profile image
Butterfly54

I`ll do it for you then dreaming STOP 1\2 hours gone by STOP 1\2 hour.

Are you getting message lol set a timer so even if you don`t hurt STOPPPP!!

Try and have whats left of a good day hun xxxxjayne :-)

jazher profile image
jazher

Hi dreaming heathen,

I pushed myself all the time, then my body did actually give up in november.

I was so ill and it lasted about 6 weeks and i am still not back to normal.

I used to be the most organised busy person, not nomore. its really hard.

Just learning how many rests you need, like if i have a mountain of ironing the i do 20 mins then rest for about 15 etc...

I only do one major thing in a day, like shopping, or cook a good dinner or hoover.

Its is hard but i hope you can learn how to listen to your body and not your head.

:)

kel xxx

DreamingHeathen profile image
DreamingHeathen

Thanks everyone, well sadly today I'm bed bound my right side has packed up...thanks for the advice though *sending one armed hugs* xxxx

jazher profile image
jazher in reply toDreamingHeathen

Aww sorry to hear your bed bound. :(

Take it easy hun, i hope you pick up soon.

hugs xxxx

sarah-d profile image
sarah-d

ive had thif now for 14 year an still cant pace myself

cxs957 profile image
cxs957

At my DLA appeal yesterday, I was told that by now I should have coping mechanisms in place which I found insulting to say the least. It is extremely difficult when you are student to have a proper routine. It's all silly. I think that it is impossible to completely deal with a condition which is variable, its not like blindness when its the same everyday. But people don't seem to appreciate this. I hope you are ok :) x x x

DreamingHeathen profile image
DreamingHeathen

Thank you, I gave up on DLA I am tired of being called a liar...I can't hack it anymore.... the doctor that came to assess me saw I was paralysed from the neck down and STILL called me a liar.... I've had enough.

cxs957 profile image
cxs957 in reply toDreamingHeathen

Omg... That's ridiculous, hugs x x x x

To be honest only you can answer your own question we all can do things but it is up to us to decide how much little we do each day if anyhing.

i just get up and start the day and jus do what i can then resyt a bit but every day is different one day i can walk the dog wash up and drive to see my mum and dad 5 mins in car andanother day i jus get up si in chair and really do nothing, i am afraid you really jus have to listen to your body love to you diddle x

Rach1977 profile image
Rach1977

Hi, I am just going to say the same as lynn, If you are finding pacing hard you should go on a pain management course. That will teach you a lot. Everyone is different but what you must do is to listen to your body. It is all trial and error until you get it correct. Good luck with it xx

Gracie59 profile image
Gracie59 in reply toRach1977

I also attended a pain management clinic and a major emphasis was put on pacing. Sounds good in theory, but sometimes life just gets in the way. On the days when I went to the clinic I had a round trip of 30 miles to drive and endure a two hour session at the hospital. That was heavy going!The clinic were aware of that, of course, but had lots of useful tips for the days when we didn't have to come in.

Goodienuff profile image
Goodienuff

I have just been given the booklet Pacing Yourself, and this is something I too am bad at. It's difficult to decide what's more important, like does it NEED to be done RIGHT NOW? Can you do it in a while after taking a rest? Can I get someone else to do it (I WISH) or is it really necessary at all?

Are most members here in UK? Are there any face to face support groups in South Yorkshire area? Mind you, I have problems getting out the door to go anywhere on bad days

This seems a great site, am glad I found it..

Sandy247 profile image
Sandy247

I pace myself by making a timetable of chores for the week - one chore per day i.e. ironing on Fridays. When Friday comes if I am able then I do the ironing if not, it has to wait until THE FOLLOWING Friday or *.[see below] That way I don't overdo it on a day when I feel I could leap tall buildings [so to speak]. It's hard to do at first but once you get used to pacing yourself you really appreciate only having to do one job if you are feeling good and then you can spend the rest of that day doing things that you like for example go to the cinema or out for a meal with friends. Admittedly, I only have to look after me but if you have more than one person to look after they should help you with the household chores. My boyfriend, who is also my carer, but who does not live with me - hoovers, does the shopping and cooks all of the food. I wash dishes and do all the light chores but even then if I am really ill with my Fibro and CFS he does these chores for me. The only thing he won't do is washing and ironing clothes [I think because he's useless at it] * I also leave 2 days a week completely free so if I have had a bad day earlier in the week and a chore hasn't been done and I feel really good on one of these 2 days then I do that chore on one of these free days. This way I don't tire myself out. As I said it does take a bit of getting used to if you have been used to holding down a full time job and running a house and keeping it clean but it is so worth it. You will find that gradually you do not feel as exhausted or in as much pain as you do now. Hope this helps. x

TIDDLYF profile image
TIDDLYF

i have been referred to a pain management clinic and at least now i have an idea of what i can expect. since then been told i have a an issue with vit D. I have to take three tablets at the same time, ane do this for 1 day a week for 12 weeks and then have more blood tests, is this usual..

Newbigginboy profile image
Newbigginboy

I don't have enough experience to give you advice on pacing - but I think we all need to be less harsh on ourselves - we're bound to make mistakes - that's what life's about - try not to go down the double jeopardy route of being ill & blaming yourself for it - no fun there. I wish one & all the very best.

DreamingHeathen profile image
DreamingHeathen

Hi Tiddly I need to be on VIT D too....But I have a major issue with taking my medication...and apparently sunlight is meant to help...shame really because the sunlight gives me really bad headaches.

Goodienuff profile image
Goodienuff

NoT at all daft, love. I have just been sent a booklet all about pacing yourself, and I've just found this site fibromyalgia-associationuk.... where you can read it online or print it out, hope it helps.

Don't get too excited, I have been doing everything they say for 8 years, and STILL can't (won't?) give up and give in until I am almost crawling on all fours!!! I'm my own worst enemy sometimes.

amanda38 profile image
amanda38

hiya this is something i am still learning about i see a cognitive behaviour therapist and she has taught me to do activity scehdules for the wk and make times for rest periods, eating etc i find them ok when she helps me but when i do them i tend topack it up with things to do and feel so guilty when i cant do it :( my vit d is low and i get really faitgued so just doing the scehdules is hard alot of the time. hope u find they help and hope u can learn topace because it is really important for us xxx :) amanda xxx

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