How do you pace yourself?

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

How do you pace yourself?

Postby Zia2014 » Tue Jul 08, 2014 1:52 pm

Hi all,

Just a general pondering really. Yesterday was the first day in weeks I went into town. I got the bus so I didn't have to drive, but I seem to have became a bit agoraphobic and find busy places very difficult :( I started off feeling not too bad, a bit like my 'normal' self, but maybe overdid it. My walking slowed almost to a crawl and I had to sit down in a cafe to rest before going to get the bus, rather than just going to the bus straight away.

It's so frustrating! The rest of the day I could barely move, was in so much pain, aching and couldn't think straight. I was overcome with dizziness too. Today I have nothing I have to do which is a blessing, but I really wasn't expecting to feel so bad. Especially as one of my favourite hobbies is clothes shopping!!

So, how do you all pace yourselves, especially early on when you don't know what you're capable of? I'm hoping to go back to work on Thursday doing short days, but I honestly don't know if I will be able to manage.

Gem
Zia2014
UKFM Regular
 
Posts: 1033
Joined: Sun Jun 29, 2014 2:55 pm

Re: How do you pace yourself?

Postby michmc62 » Tue Jul 08, 2014 2:18 pm

just been to the pain clinic ,was talking about pacing ,just do what you can ,like you i have the same reaction if i try to hard ,i feels like i have to recharge every few minutes ,pain in my backs the worse ,talking to the psychologist she seems to think that they can help with your pain levels and the way we think about pain ,maybe thats the way forward ,mind still a bit sceptic as i cant see no end to this ,,asked when my appointment will be ,told oct /nov time ,got to laugh ,what do you do till then lol x
michmc62
UKFM Newbie
 
Posts: 6
Joined: Sun Jun 29, 2014 3:59 pm

Re: How do you pace yourself?

Postby DonnaMorgan14 » Tue Jul 08, 2014 3:05 pm

I had to go to physio last Wednesday and she said i didn't know how to pace myself. she has given me exercises to strengthen my lower stomach muscles, which are supposed to support your back. it is a bit like pelvic floor exercises. but i just can't do them. i saw a medical program the other day where a young girl had a stomach like mine and she had to have her muscles stitched to pull them back up as the Dr said she would never be able to pull them up with exercise as they had gone too far. plus the cheeky woman said i was unfit that's why i have trouble breathing. not a happy UNFIT bunny now :(
DonnaMorgan14
UKFM Member
 
Posts: 15
Joined: Sat Mar 15, 2014 10:00 pm

Re: How do you pace yourself?

Postby The Fizz » Tue Jul 08, 2014 3:26 pm

I find it difficult going round the shops too. My other half drives me but can't come in with me usually, as we have a rescue dog with separation anxiety, which further complicates things. I can't carry anything much as I get upper back spasms, so I have to make my handbag as light as possible. If I get stuck in queues paying for things, I sometimes feel trapped and panicky (slightly agoraphobic) so I don't very often go shopping unless I'm with someone.

Some shopping centres have those motorised scooters you can hire, have you thought about using one of those, as it's quite difficult being on your feet for long periods of time, as you can't go in a cafe every 20 mins or so. (I was told that every 20 minutes, you should change what you are doing - whether sitting or standing, change position). The dizziness could be caused by the stress of going out, especially if you have agoraphobia. I take slow deep breaths to help stop feeling anxious. Hope this is of some help.



Zia2014 wrote:Hi all,

Just a general pondering really. Yesterday was the first day in weeks I went into town. I got the bus so I didn't have to drive, but I seem to have became a bit agoraphobic and find busy places very difficult :( I started off feeling not too bad, a bit like my 'normal' self, but maybe overdid it. My walking slowed almost to a crawl and I had to sit down in a cafe to rest before going to get the bus, rather than just going to the bus straight away.

It's so frustrating! The rest of the day I could barely move, was in so much pain, aching and couldn't think straight. I was overcome with dizziness too. Today I have nothing I have to do which is a blessing, but I really wasn't expecting to feel so bad. Especially as one of my favourite hobbies is clothes shopping!!

So, how do you all pace yourselves, especially early on when you don't know what you're capable of? I'm hoping to go back to work on Thursday doing short days, but I honestly don't know if I will be able to manage.

Gem
"The Impossible Just takes a Little Longer" - Art Berg
The Fizz
UKFM Member
 
Posts: 15
Joined: Sun Jun 30, 2013 6:01 pm
Location: North East

Re: How do you pace yourself?

Postby Zia2014 » Tue Jul 08, 2014 6:36 pm

Hi all,

Thanks for the replies.

michmc62 - I've not even been to a pain clinic even though there is one! The timing is awful, what a wait for you :( Recharge sounds about right!

DonnaMorgan14 - I know I AM unfit lol! But she shouldn't have said that to you, charming! But it's so hard to know how much to do and when to stop isn't it. I have some appointments to arrange with my physio, I was going to wait until after my diagnosis but I guess it would be best to see him sooner rather than later.

TheFizz - Aw I love dogs, what sort do you have? I did find carrying heavy bags an issue for my back but hadn't thought that through. I know what you mean about queues, I was starting to get a bit overwhelmed when it was busy and noisy and I had to wait in a queue. I thought I was going to faint, it was too much going on if you know what I mean? I even got overwhelmed when I was sat with my family and there were several conversations going on at the same time :roll:

Don't think we have those scooters at ours, I've only seen the little trucks for kids and there's no way I'd fit in one of those! That 20 minutes thing is interesting, where did you hear that?

Unfortunately the dizziness has been bad even when I'm at home, almost every time I stand up, bend down or walk I'm a bit overcome. Some days are worse than others though.

Thanks all, it's really helpful to be able to talk to people on here :-)
Zia2014
UKFM Regular
 
Posts: 1033
Joined: Sun Jun 29, 2014 2:55 pm

Re: How do you pace yourself?

Postby clairefish » Tue Jul 08, 2014 9:58 pm

Hi there, I had such a hard time with the paceing thing at first but its getting a bit easier, one thing that has really transformed going out for me is my stick seat, sounds funny but its brilliant, when I get in too much pain I just slow right down n the stick helps me walk slower, then when I'm in agony standing in a queue I just unfold it and sit on the seat part and wait for my turn, it also helps that the checkout staff tend to offer help when they see me sitting in the queue which in turn makes it easier to accept it, I find it very hard to ask for help and I feel so much more independent with my stick seat, I would highly recommend it, hope this helps a little, gentle hugs to all of you, Claire
clairefish
UKFM Newbie
 
Posts: 5
Joined: Tue Sep 25, 2012 6:48 pm

Re: How do you pace yourself?

Postby migrembe » Wed Jul 09, 2014 8:02 am

find out where all the free benches are - including the ones they kindly put in shops so you can try shoes on, or take a garment to try on and sit on the seat in the changing area, but don't try on or the disabled toilet, but not the seats attached to a coffee shop as that can end up expensive and sit down, lots and for as long as you need. When i am out i have 2hrs at max and then i need to head home but i normally have to sit down when i get off the bus and then about every 15 mins or so. If i need to try on clothes i have to be more choosy about what i want in the first place and after 3 changes i am done. Go with someone in the know so if you get stuck at least they can find the cavalry, which at least in my town comes in a taxi. One last point, stop worrying about what others might think, its got nothing to do with anyone else. Beverley x
migrembe
UKFM Member
 
Posts: 429
Joined: Fri Feb 24, 2012 8:23 am

Re: How do you pace yourself?

Postby ..:: lisa ::.. » Wed Jul 09, 2014 10:02 am

I would love to know the key to this too.

Most days I can just about drag myself out of bed never mind anything else, around 11.30 I start to feel the batteries drain by 2.30 I'm on empty.

Some days I try and push myself but by about 4 I'm just a heap. I'm in bed usually about 8pm and collapsing in to it is such a relief I can't even explain.

Do any of your symptoms get A LOT worse when tired?

I find I can barely think or speak. My speech is so slurred!

Some days it's the pain that's just too much, as has been the case the last few days, others it's the fatigue.

I want so much to participate in "normal" life and others don't understand that I'm not just a bit tired I'm exhausted and in extreme pain.

I get myself to the point where I'm just in tears mainly with frustration.

I tried doing myself a timetable (accompanied with alarms to remind and print me) I manage it for a week or two then I get too tired to carry it on.

I give myself 3 separate days a week to recover from the rest of the days but it's just not enough some weeks.

I find it takes me around 3 days in a row to recover from 1 "normal" day.

Most days even speaking and listening to people is too much. It takes so much brain power to decipher what's been said then figure out a reply then make the words come out.

So hard to make people understand.
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
..:: lisa ::..
UKFM Member
 
Posts: 89
Joined: Sun Jul 06, 2014 6:24 pm

Re: How do you pace yourself?

Postby dazzleship » Wed Jul 09, 2014 12:21 pm

Lisa I totally sympathise as I'd love to know how to pace myself too. I think my problem fundamentally is I haven't accepted this stupid Fibro yet, and I think that is a big stumbling block.

Does that make sense? I feel like I don't want this illness, some days I feel like maybe I don't have it, and then it hits big time and I think yeah I do have this and I really need to start learning to live with it instead of fighting it.

But still I continue on more or less like I've always done, and I know - I know that I need to slow down and pace - whatever that means.

But it's so hard as I'm sure you all understand, to take it easy when I'm feeling not too bad, you know? I usually get to the feeling awful stage before I'll finally give in and rest.

And a part of me knows that I shouldn't be letting myself get like that, yet another part of me just wants to live my life like I did two years ago before this all started.

Damn, I hate it :evil: :-?
dazzleship
User avatar
dazzleship
UKFM Member
 
Posts: 460
Joined: Fri Jun 20, 2014 10:40 pm
Location: scotland

Re: How do you pace yourself?

Postby FluppyPuffy » Wed Jul 09, 2014 2:16 pm

It is possible to still do and enjoy some of the things you did pre~FM, you may not be able to do them for the same sort of time period, or at the same speed you did previously, but there is still fun and pleasure to be had in our lives.

Pacing is the key to be able to do things, along with proper resting in between so you can keep going without {hopefully} being left with nothing part way thru :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:

There are various ways to approach pacing. For some, doing an activity for 30 mins, then having a 15 min rest works. For others, doing something for a set period of time, then having a rest for the same length of time gets them thru the day. For some of us tho, finding a baseline from which to work and how long needed to rest is what is needed.

To determine a baseline for an activity, the activity needs to be carried out a number of times, when things are at their most settled/less intrusive, when things are not so settled, and also when things are pretty much at their worst. As this can occur over a number of days, choosing an activity that is carried out daily tends to be what is suggested.

For each instance of the activity being undertaken, the idea is to time it until things start to feel uncomfortable/worse and then stop, making a note of how long it was before things started to feel more uncomfortable/worse. No pushing onwards or thru things as that obliterates the whole idea of pacing :nono: :nono: :facepalm: :facepalm: When a suitable number of times have been noted for carrying out the chosen activity at different times, the average needs to be calculated.

Once the average length of time is known, a percentage, such as 15%, should be deducted, or, if percentages completely throw you, as they do me :oops: :oops: :oops: :oops: rounding your average time down works too. If the average time from activities is 12.5 mins, it could be rounded down to 10 mins.

The same idea needs to be applied to rest periods too. When timing a rest period, starting from when you sit down, and ending when you feel ready to carry on tends to be what is suggested.

Once baselines for activity and rest are known, the next step is to start implementing the approach. Maybe start with a part/half day, and plan some activities based on the timings and see how it goes. Things might seem a bit faffy and frustrating at first, and the urge to carry on rather than stopping and resting will try and take things over, but it can be mastered with patience and perseverance.

Pacing isn't 100% the answer all the time, things will go a bit pear~shaped at times, but if the principle can be used for most of the time it can, and does help.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: How do you pace yourself?

Postby Zia2014 » Wed Jul 09, 2014 2:45 pm

Hi :-D

Claire - what is a seatstick? I've never heard of that but it sounds brilliant! I do feel a bit of a fraud though, I can walk, it's just after a bit I slow right down and can easily lose my balance.

Beverley - That's a good tip, thankfully there are seats in the shopping centre although at the weekends they are full of people. Funny, what you said about trying on rings big bells! I had to leave some shops without trying anything on to try and conserve my energy. Still gutted about a couple of things I didn't try on even now! I was thinking about a taxi if needed.

Lisa - Hi, you're new too! :welcome: How long have you had fibro? I feel the other way round, that the morning is pretty much a wipeout and hours go by with me in bed or in the lounge, and suddenly I realise the time! I seem to have more energy later on, whether this is because of my drugs I don't know. I normally have to wake up about 2 hours before I need to do anything! I'm going to try working afternoons only for the next week starting tomorrow, and see how I go. Although they want me to pack and I'm not sure about doing anything physical.

I can sooooo identify with you on your points :( The frustration of wanting to be normal again, of being not understanding, of talking and listening. I was sat with family 2 weeks ago and couldn't cope with it - there were only 8 of us!

dazzleship - I hear you, I haven't had a diagnosis yet so I'm still not sure if that's what I have. Even so, to accept this is how life is now is really hard :(

Fluppy - thank is brilliant!! Thank you so much, that is really useful advice! I do have a tendency to err push through :oops: and I know that's not helpful. So instead of not shopping when I started to feel bad I just carried on and ended up having to stop in a cafe because otherwise I couldn't have got to the bus/taxi :nono: Whereas really I should have stopped much earlier :idea:

Thank you all, I am sending you virtual hugs because you guys have already helped me so much, just by being there to talk to.

Gem x
Zia2014
UKFM Regular
 
Posts: 1033
Joined: Sun Jun 29, 2014 2:55 pm

Re: How do you pace yourself?

Postby FluppyPuffy » Wed Jul 09, 2014 2:56 pm

I asked Mr Googley about seat sticks, clicky this Linky for some images.

Looking on places like Amazon, there is a vast range of them to fit in with pretty much all budgets. They originally were designed for people who went out shooting, but have grown in use, and become adapted as walkings aids, hiking poles etc etc.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: How do you pace yourself?

Postby dazzleship » Wed Jul 09, 2014 3:08 pm

Fluppy thats really helpful information thank you so much :-) I shall be sure to give that a go.
dazzleship
User avatar
dazzleship
UKFM Member
 
Posts: 460
Joined: Fri Jun 20, 2014 10:40 pm
Location: scotland

Re: How do you pace yourself?

Postby ..:: lisa ::.. » Wed Jul 09, 2014 4:48 pm

Hello :-D
I haven't been diagnosed yet, the medical professionals I've met just think im crazy :yikes:

I've seen those stick seats, I would quite like one!

Just a quick question about sticks... do you find they help? I tried one last year but couldn't get on with it, I didn't understand how to use it plus I was using it for balance...
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
..:: lisa ::..
UKFM Member
 
Posts: 89
Joined: Sun Jul 06, 2014 6:24 pm

Re: How do you pace yourself?

Postby The Fizz » Thu Jul 10, 2014 12:20 am

Our dog is a Heinz 57, but mainly Lab/collie mix. With regard to the bag carrying, try not to have heavy things like keys and too much change in your purse. I usually go through mine purse before I go out to make sure I don't get weighed down by it, as it all adds to the weight of your handbag. I put my keys in my pocket instead of my bag and don't carry anything unnecessary. It was hard for me to do this at first, as I was used to carrying things 'just in case', but it doesn't do you any good as once you've been shopping you have all your other things to carry as well. The seat stick sounds a good idea, (as mentioned on here), I've often thought of getting one myself (my mum calls them 'shooting sticks').

The 20 minute rule thing was actually on a Fibromyalgia website, but is also recommended by doctors. If you vary the muscles groups that you use, they shouldn't cause as much of a problem. So if you were standing in the kitchen for 20 mins, you could go read for 20 or have a cuppa etc, then go on to something else. It takes me longer to get through chores, but in the long run, it's better than being laid up for days on end because my muscles have gone into spasm.

I get dizziness too sometimes, I think stress can be a big factor in that. I try and do some breathing exercises, that helps get oxygen to the brain. I know what you mean about people all talking at once, it's similar to being stuck in a queue in a shop and not being able to escape.



[

quote="Zia2014"]Hi all,

Thanks for the replies.

michmc62 - I've not even been to a pain clinic even though there is one! The timing is awful, what a wait for you :( Recharge sounds about right!

DonnaMorgan14 - I know I AM unfit lol! But she shouldn't have said that to you, charming! But it's so hard to know how much to do and when to stop isn't it. I have some appointments to arrange with my physio, I was going to wait until after my diagnosis but I guess it would be best to see him sooner rather than later.

TheFizz - Aw I love dogs, what sort do you have? I did find carrying heavy bags an issue for my back but hadn't thought that through. I know what you mean about queues, I was starting to get a bit overwhelmed when it was busy and noisy and I had to wait in a queue. I thought I was going to faint, it was too much going on if you know what I mean? I even got overwhelmed when I was sat with my family and there were several conversations going on at the same time :roll:

Don't think we have those scooters at ours, I've only seen the little trucks for kids and there's no way I'd fit in one of those! That 20 minutes thing is interesting, where did you hear that?

Unfortunately the dizziness has been bad even when I'm at home, almost every time I stand up, bend down or walk I'm a bit overcome. Some days are worse than others though.

Thanks all, it's really helpful to be able to talk to people on here :-)[/quote]
"The Impossible Just takes a Little Longer" - Art Berg
The Fizz
UKFM Member
 
Posts: 15
Joined: Sun Jun 30, 2013 6:01 pm
Location: North East

Next

Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 12 guests