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Pacing

Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
This word seems to be coming up for me a lot recently and its something I find almost impossible. The difference in energy levels (and pain levels) between a good day and a bad day are enormous. So when I have a good day I try to get as much as I can done. When I'm having a crappy day I end up still pushing myself because things need to get done and I don't want fibromyalgia to be ruling my life. I also find it really hard to work out when to stop - the pain and fatigue kind of just hit me and then I'm struggling. I don't feel like I can currently identify any warning signs that I'm over doing it.

I've tried to get some answers from people with the condition, even going on the fibro boards and all get is "you'll just get used to it"...very helpful!

So does anyone have any experience with having to try and pace themselves so that they don't end up very tired and hurting? How did you learn to do it? Any tips?

Thanks! :)

Comments

  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Slowly and steadily, and by being really really strict with yourself.

    Start with baby steps - so can you do something for half an hour a day? 5 days running? If so, go for that. Then add a second half hour each day to that. If that's working, try one hour and one half hour.

    The key is to really ration yourself when you're having a good day - allow yourself an extra half hour at most on each activity slot.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Half an hour of what though? I try to leave the house every day because otherwise I get totally acrophobic. I've got my little projects that I try to fill my time with, but I get so frustrated that between naps and getting up/washed/dressed/fed that I end up being totally knackered. I managed to go to the bank today and I've been sitting in the park to just calm myself down after the hecticness of town, but I know I need to go have a nap once I get in. It just drives me crazy!
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    It's kind of hard to help. Part of it does seem like you need to learn to just deal with it. You have a condition, it affects your life.

    You're right to break up your day, do short trips into town or whatever, but you need to understand and accept your limitations.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Half an hour of what depends on what you can manage. You really do need to learn to live with it, but it means being proactive and work out what you can manage and how much rest that requires.

    So, for example.

    1. Getting up & having breakfast. You find yourself needing to have a sensible breakfast to set you up for the day and maintain a healthy diet. But getting up and making breakfast is tiring. Having a steady routine helps. Therefore, get up at the same time each day and make yourself breakfast and tidy up afterwards. If you can manage that every day. If you can't, then adjust the plan and have a rest on the sofa, watch some TV or knit or whatever works for you, then move onto the next thing.

    2. Having allowed for a suitable rest after breakfast, get washed and dressed. Work out if you need a rest after that.

    3. Work out how much 'out of the house activity' you can manage each day and build this in.

    etc.

    You'll also need to work out what general chores to do on a daily/weekly/monthly basis and spread these out so they don't build up to a amount that isn't manageable. Washing up is a good example of this. If you've got the energy to prepare, eat & wash up after a meal in one go then do that so that you don't end up with a mammoth washing up session being required. If you haven't got the energy to prepare, eat and wash up in one hit (reliably) then separate out the washing up and do 3 meals worth once a day as a separate activity with sufficient rest built in.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    One thing that has helped me is when I have a bit more energy cook meals and freeze them so I can just heat them up when I have less energy. I tend to have more energy when I'm not hungry so I try not to wait until dinner time to start cooking.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    The problem is that I am like a bulldozer on good days (like yesterday) and the next day I end up in bed. I think you're right scary about setting timers and getting up out of bed and going to bed at the same time. I need to sort out some kind of routine because right now my life is pretty damn chaotic. I have no appointments on set times, I end up waking up getting straight on my laptop, answering emails and then making any calls I need...thus by the time I come to actually getting up (about 10.30-11) I'm shattered again.

    Who thought that organising your life and getting into healthy patterns was this hard!
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Don't know what kind of phone you use, but one of my friends lives by the alarms on his iPhone...literally his whole life is mapped out by them. He has an alarm to wake up, an alarm to eat breakfast, an alarm for shaving, an alarm for leaving for work... I guess it really cements the idea of a routine for him, and is perhaps something (though perhaps not to that extreme) you could look to include?
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    That's exactly why I got an iPhone so I think you're right about actually using it.

    I got up (after replying some emails and making some calls) had breakfast, out the washing out and then ended up fast asleep on the sofa for the best part of over and hour. I really need to go give myself a boot because I need to go and pick up my prescription (20 min walk away plus time waiting at boots then the walk back) and I'll have to have a nap. I feel totally unproductive :( I've got another load of washing to do, I'm not washed or dressed yet, the washing up is piling up (I've asked my housemate to do some considering I've managed to cook 2 nights in a row, and I'll have to tonight because she's not back til 9 and I'll be starving it I wait for her).

    So yet again I'm not going to have managed any of the things that I want to do, and the chores that need doing aren't getting done. My housemate does her bit but shes not well either and she works stupid hours.

    I really think I need to update my DLA claim and see if they 'll up my care component so I can get someone to do an hour of cleaning a week or something which would take the pressure off me somewhat.

    Sorry I'm moaning, it's my own fault I pushed myself most of this week and now I feel shite so I shouldn't really be complaining!

    Do you think having like a print out of my week from iCal where I can either pencil in things like laundry today and another chore another day (or put it in on the computer) would help or is that just too regimented?
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Shh, don't tell anyone about this print screen, it's from my course that I wrote. But what about doing a schedule like the attached? It's still fairly flexible, but allows you to put chores etc in to it.

    I think you also need to reevaluate your definition of 'productive'. And to an extent I understand, because though I have nowhere near as severe a condition as you, i am still restricted some times.Attachment not found.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    You also really need to start getting up pretty early on - spending lots of time in bed really won't help. You need to make the distinction between sleeping, resting and napping.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    How early is early? I don't do mornings well because I have to take the bulk of my meds at night and most of them have a sedative effect.

    Pacing didn't go well today - got up washed and dressed had breakfast and then needed a nap - ended up sleeping for 2 hours on the sofa, I only got woken up by my housemate going to work. Then my short trip across town and then to boots to get my medication took nearly 3 hours. Didn't eat lunch (as normal) but I did stop for a drink and sat down a couple of times to rest on the way home. I didn't go into any shops on the way or on the way back but now I'm totally shattered and hurting. I'm not leaving the house tomorrow but I'm pissed off because I tried to make a concerted effort to pace myself and it all fucked up
    :(

    Productiveness - I get what you're saying, and I know I hold myself to very high standards (I keep thinking "I did a bloody dissertation and now I can't even read some books and make some notes, how the hell am I going to be able to do my MA). What do you think I should be counting as being productive?

    I'm seriously thinking of moving to a ground floor flat after Xmas if I can sort out the finances and I'm going to see if I can get a support dog maybe - I think it might really help.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    what kinds of things do you need to get done, apart from household tasks and general errands like picking up prescriptions - with regards to washing, if theres just you there shouldn't be much more than one load a week should there? x
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    No there's 2 of us and I pretty much do all the laundry.

    I have my room to keep tidy, I'm trying to do research for my disability styling project, I have occasional time for pictures shoots (and then need a day to recover), I have to keep my make up kit together and clean, keep practicing my make up skills, keep up with current fashions, socialise with friends (which is rare tbh), get food, cook, and a few other things.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    what kinds of things do you need to get done, apart from household tasks and general errands like picking up prescriptions - with regards to washing, if theres just you there shouldn't be much more than one load a week should there? x

    I live alone and seem to do three loads of laundry a week.

    Bed sheets.
    Towels, face clothes and bath mat.
    Clothes and anything else.
    Plus I hand wash my hand knit socks.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I would say you get up early enough already. I live with mental health problems as you know and get a lot of fatigue from my medication and the illness (but not as bad as you and not the pains to go with it) and find I do better if I stay in bed to about 10.30-11am when usually my friend comes over to help me get up. If I get up any earlier I just end up in bed again in the afternoon. I used to sleep about 20 hours a day and have been known to sleep 28 hours straight so I think it's a big improvement for me to be sleeping about 10-11 hours a day, I don't think that is unreasonable at all.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I've set my alarm for 8.30 even if it's I just get out of bed have breakfast and meds and just come back then that's something. Duvet day tomorrow!! :)
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I'd say it's not so much the time you get up as such that matters, more trying to keep it in a reasonably fixed routine and aiming to sleep in bed and get up once you're awake rather than laying around in it - if that makes sense.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Yeah life being so chaotic it's difficult to get into a routine but I'm getting up every day at the same time, going to bed isn't quite so good. But my duvet days keep being pushed back and I am in pain getting a migraine and so tired. But when I'm not really busy (like all day like I've had to be today - I'm still not home) I am trying to have naps - but I'm sleeping through my alarms and stuff.

    Urgh! I'll get there but wtf wont life work in my favour for once!!!
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    You're really not getting the point.

    Pacing requires you to be proactive. It requires you to take responsibility and manage your own health. It requires you to do things to help yourself. It requires you to spread things out so you don't end up making yourself ill.

    You say your duvet day keeps getting pushed back - to the extent that you've now got a migraine and are very tired. You're no longer being productive, and it's just going to take longer to recover now you've run yourself down.

    You say life is chaotic - and you can't get a routine. Life is chaotic because you don't have a routine.

    Get a pen and a piece of paper, work out what it is you need to do each week and each fortnight. Then spread them out across days, leaving yourself a total rest day each week or each fortnight or as often as you think you'll need it. Also work out a daily routine for yourself. If you're trying to stay fit & healthy then I would strongly recommend that that includes 3 meals a day. Even if those meals are small snacks, and they're at the same time (ish) each day. You need your body to know that you're looking after it, and it's getting regular, reliable nutrition to stop it going into defensive mode.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    The problem is when I do photoshoots. Maybe I'm not really ready to be doing them yet because they are all day and there's not really any wiggle room in that. I'm doing them to build up my portfolio so as soon as I am well enough to be doing paid work I have a substantial portfolio behind me - plus it means I get to keep practicing my art essentially. But maybe I'm not ready :(
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    The problem isn't necessarily actually doing the photoshoots, it's how you plan them.

    You may find that you can make photoshoots work, if you make sure you have a quiet day before hand and a duvet day straight afterwards for example. That will however mean you that need to plan and organise your life. So making sure that prescriptions are all sorted, making the most of the ring and collect service pharmacies offer so you can get all your medication in one trip without having to pick up and drop off prescriptions etc.

    Make sure you do your laundry a few days in advance and so you don't need to do any for a few days afterwards etc.

    It's dull, and it's boring, and it requires effort, but a lot of it is what being an adult and looking after yourself is all about. It's the same kind of planning and management that people with families, busy jobs, own businesses etc need to do.
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