pacing misconceptions!

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pacing misconceptions!

Postby galio » Wed Feb 17, 2016 12:12 am

so try pacing says the occupational therapist but do try to get some exercise, try pacing says the gp,but do try and get some exercise, so I tried pacing ;-) on Friday I paced 6 and a half miles dont think thats what they had in mind!!! :chicken-dance: Ive been off work now since 17th Jan with stress and this is impacting greatly on my fibro but last weekend hubbie and I headed west to our fave chill hideout, its one of those places where your soul sings and your mind recharges (which was badly needed )and as I was finaly feeling good I just went for it and thought sod you fibro :face-slap: your not going to stop me doing something I love, well ok fibro you can sttop me most of the time but every now and then Im gonna kick back at you, I loved every minute of it even the two near misses with stones attacking me and trying to break my ankle twice! this is where bendy joints come in handy it bent and jumped back again so did my knee and hip! not so much my hubbies back which i used to stop me face planting into said stones! Friday night I was fine if a little stiff, saturday I was great till i had a shower and I was wiped out the rest of the weekend, but the other days as planned were spent sitting in the passenger seat being driven round and taking photos.and I actaully slept well and felt refreshed each moring, I didnt repeat the mistake of saturday I had a shower before bed not when i got up now 3 days later I stil feel fantastic (well in mind I do) a clear head was needed for filling in the PIP application, I wasa fortunate to have help from a volentary advisory service and by talking about things with them they said to put stuff down I would never have thought of so fingers X that I get somewhere with it.
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Re: pacing misconceptions!

Postby clairbear » Wed Feb 17, 2016 3:53 am

Fair play hun..
You certainly kicked back!
The pace yourself but exercise is funny, pacing in general is odd - I don't know many people that get it to a happy medium!

I used to do the fresh air, exercise and zen like state in the Malvern hills & it helped massively with my general wellbeing like nothing could touch me in those few hrs!

As much as the pace/exercise thing goes if they'd of told me last year that I'd be like I am today I might of preserved with exercise and ignored the pacing a little.
I've lost so much muscle due to being bedridden I can barely lift my own legs so pacing now consists of short bursts of energy to maybe venture downstairs!

You do what's best for you & enjoy your time out n about - sometimes Fibro needs a reminder of who's the boss in our odd relationship with it!
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Re: pacing misconceptions!

Postby robbiecramp » Wed Feb 17, 2016 8:38 am

Pacing is very difficult and it is down to the individual ability. I Have been diagnosed with ME/CFS recently as well as fibro and am doing pacing and boy I am shattered. It's based on doing a little bit before your body tells you to stop.
So for instance you think right going to hoover house today do it in stages one room 10 minutes have a rest and do something you enjoy after. Even if your having a good day still do only 10 minutes as this will help your body adjust and then in time you can go for 12 minutes and so forth.

That sounds easy but it really isn't so good luck and hope you found it useful.

Robbie
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Re: pacing misconceptions!

Postby Chickenosaurus » Wed Feb 17, 2016 3:22 pm

I'm sure pacing works really well for some, predictable, conditions - but I'm not convinced that it applies that well to fibromyalgia. The fact that pain/fatigue/etc can be influenced by temperature, atmospheric pressure or any other random factor makes it more complicated.

I saw an occupational therapist who gave me handouts on rheumatoid arthritis (which I don't have!) and asked me countless questions about household chores. He was particularly concerned over my bed-making skills and asked if I didn't make my bed in the morning because of the pain - to which I pointed out that life was too short & I'd really rather be doing other things (also - how do you actually make a bed? I have a duvet, it's either flat or it's not... :crazy: )

After more talk about washing up dishes, I reached the is-this-what-my-life-has-been-reduced-to? stage, went home and ripped out most of a hedge.

Yes, I was achey the next day - but at least I'd done something with a bit of purpose.

So, yes I get the theory of pacing, but don't think the people advising you to do it quite understand the fluctuations of the condition - or the need to achieve things. I also think the don't-overdo-it mantra encourages people to be overly risk-averse, which I don't think is a good thing...
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Re: pacing misconceptions!

Postby SchroedingersCat » Wed Feb 17, 2016 5:19 pm

Chickenosaurus wrote:So, yes I get the theory of pacing, but don't think the people advising you to do it quite understand the fluctuations of the condition - or the need to achieve things. I also think the don't-overdo-it mantra encourages people to be overly risk-averse, which I don't think is a good thing...


^^^^^^^This. Definitely
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Re: pacing misconceptions!

Postby galio » Sat Feb 20, 2016 12:28 am

SchroedingersCat wrote:
Chickenosaurus wrote:So, yes I get the theory of pacing, but don't think the people advising you to do it quite understand the fluctuations of the condition - or the need to achieve things. I also think the don't-overdo-it mantra encourages people to be overly risk-averse, which I don't think is a good thing...


^^^^^^^This. Definitely

yes I agree, Im getting to know when I can push myself a bit and when i need to rest, well my body just wont do anything when i need to rest but once i get going I need to do something constructive, I will do the dishes, wash and rinse the glasses (i dring water a lot and dont like tea or coffee) then put the plates in to steep (so I tell myself rather than admit i need to rest) then I go back and fo the plates then I put the cutlery in and have 5 mins check of fb, after that i do any pans or oven dishes and wipe the benches before i sit down to do a bit of colouring (i got an adult colouring book for xmas as I love colouring its so relaxing) that lasts maybe 10 mins befoer my hand is too sore so back to the lap top to play games before i think of doing any thing else, but if i have a walk planned I will do very little all day until my husband is home then we have a walk, I have always walked when troubled and have found it frustrating over the last few years, but my walk last week was so worth it although i have suffered ever since physically, mentally I am just coming down from the buzz it gave me.
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Re: pacing misconceptions!

Postby galio » Sat Feb 20, 2016 12:30 am

ps my son had his appeal for higher mobility yesterday and he won so he will be getting a motobility car again. Im now waiting to hear about my assesment for pip care alowance
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Re: pacing misconceptions!

Postby jacquimacqui » Sun Feb 21, 2016 5:33 pm

I had began pacing before my diagnoses. 1st it was work in the morning (teaching assistant), then my 'golden hour' when I did something my body allowed me to do and that I enjoyed. That depended on what part of my body was working the best at that time eg, no brain fog that day, watch a quiz show, legs and back strong, walk or excercise. Obviously, some days that time was spent in bed.

Then the school run at 3.30, this was hell on wheels because I dont drive and I sometimes wondered if I would make it home.

Then complete rest until I would begin preparing the evening meal. Back then I would push myself as I had 3 adults and a child to feed but would invariably have to hand over to the 1st adult who came through the door.

Sometimes too exhausted to eat, I would shout instructions to my grandson (he lives with us) on what he needed to do to prepare for school the next day and get to bed. Then I would get myself upstairs on my bottom, to say goodnight and tuck him in, knowing nothing else would be achieved that day.

Since my diagnoses just before Christmas, the sleeping tablets have made a great difference. A good sleep relaxes me and also gives me a break from the pain.

But my main point about pacing is to pace parts of your body as well as your day/time. If there is something physical you have to do, enjoy something mental and vice versa. I no longer fight my f/m and will shut down if I have to but I also pace my achievements depending on where I am being attacked.

Please let me know how the rest of you pace and do you agree or disagree?!?!?!?!? odls
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Re: pacing misconceptions!

Postby galio » Sun Feb 21, 2016 10:58 pm

i have a meeting with my head teacher and someone from HR about my absence rate in the last year, I manage most days but by the end of trhe week I have a double playground /lunch duty which kills me, I get maybe 3 weeks into the term and have to miss a friday sometimes friday and monday. I was workign mon thurs fri all day in school and 2 half days tue and wed but they moved 2 hours from one school to another and that means im working near enough all day tues too and only 2 hours wed. the option was that or have to get from one school to the other as fast as possible on a wed leavin one at 1.20 starting at the other at 1.20! it jsut wasnt practical even though they were going to give me 2 mins from each school, one is on a single track road thats a no go and nowhere in this was i scheduled to have lunch because i was only working from 11.15 well i wasnt havnig lunch at 10.30 and the stress of that option would just go for me. Im signed off again with stress set off with the 2nd anniversary of my daughters death mid jan and the meeting is the day after my late daughters birthday. ah well HR wil see me on a bad day!
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Re: pacing misconceptions!

Postby galio » Sun Feb 21, 2016 11:00 pm

my fb post for freinds to see how my life is now and how i pace on a good day

Well got there eventually only took 2days and lots of rest but yipppeeee one chocolate cake made. Many of you will have seen me posting stuff about fibromyalgia well this is how it afgects me and i consider myself as only mildly affected compared to so many others.
Friday 10am get on floor and lift out sugar, flour and cocoa powder from cupboard. Crawl to livingroom and use sofa to get up off floor (hmm nay have to move baking ingredients )spend 20 mins resting (fb is a good distraction to stop me overdoing stuff)
11am lift mixer out cupboard set it up and get cake tin out of cupboard set up stool then go rest
2.30 Get milk and marge out of fridge sit on atool and weigh out ingredients put into mixer and add eggs swithch on. .now at this point there is no going back and you have to grit your teeth and keep going through the pain and exhaustion and get it into thr tin and into the oven
3.30pm yeah its in the oven set timer
4.30 didnt hear timer and didnt think to check when hubbie asked whays in the oven (and why did he not check he aleats has a nosr who ever is cooking) at 4.15! Smell burnt cake rush to rescue it thankfuly only slight bit caught on one side
8pm remember cake still in tin "cooling" remove put on plate and cover
Saturday 12pm half cake and get on floor to get icing out. Use corner od benches to get up (yeh a goid day then) go see andy to stop me keep going and overdoing it 1pm break up chocolate into 2bowls melt one lot and add condrnsed milk try to beat it then put on half cake go rest.
1.45 melt other chocolate add butter condensed milk and icing sugar beat and spred on top of cake
2pm chop up bar of chocolate sprinkle on top then write 200 word essay on how to make it while resting for rest of the day pumped full of painkillers that dont really work but ypu take them in the hope that they may help this time.
Feel fantastic that you have achieved something
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Re: pacing misconceptions!

Postby louise162 » Tue Feb 23, 2016 8:14 pm

At the moment I don't have any energy to pace with. I wish I did x
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Re: pacing misconceptions!

Postby heather trippett » Fri Feb 26, 2016 1:37 am

got a stairlift at last just the stairs used to tire me out ive got fm/cfs diagnosea xmas 2015 :sleep:
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