Fibromyalgia and pacing have been the bane of my life. Pacing is something that you are told to do when you have fibromyalgia but getting it right is something that has eluded me for a long time. I’d think I was getting it right, then all of a sudden I would crash, making me realise I didn’t understand it at all.
Rather than pacing myself effectively, I was trying to do as much as possible while still keeping my head above the water. In the end, this approach always failed and I suffered as a result.
fibromyalgia And Pacing
We are all told to pace ourselves when we are diagnosed with fibromyalgia. I am sure some doctors are better than others at explaining what pacing is. However, I’ve come to appreciate that it’s a term that is banded around without much explanation at all. It’s as if we should know what it means instinctively.
“Do a little at a time and break down tasks so they are simpler”
This is what pacing is in essence but, for me, it is far too simplistic an explanation. I mean, how do you manage to pace when you have so much to do in a day?
When you have fibromyalgia or any other chronic illness that is defined by chronic fatigue, pacing is an essential component of feeling well. It is absolutely vital to pace yourself if you want to live well with these illnesses.
Though I am far from mastering pacing, I am beginning to understand what this term truly means and today I am going to share some insights that I have learned.
Pacing includes every single activity that you do in a day
When you think of pacing, your mind often relates it to exercise, work or the big activities that you find tiring. While it is true that you need to pace yourself when doing all of those things, we also need to consider the smaller activities that we do each day too.
To pace ourselves successfully, we need to think about absolutely everything that we do as a form of physical exertion. Walking around the house, washing ourselves, making our meals… every single thing that we do, no matter how small or trivial, is an “energy stealer”.
I didn’t appreciate just how much I had done
I often found myself wondering why I was feeling so poorly when “I hadn’t done that much”. The truth was, I had actually done quite a lot without realising it. I was guilty of ignoring the small daily tasks when pacing because I felt like they were things that I should be able to do without issue.
I’m talking about the things that healthy people take for granted and don’t have to think about. I resented the fact that getting up, washed and dressed would drain me so much. I didn’t want to let the simple act of getting ready stop me from being able to do other things.
Now I am learning that I can only do so much in one day and that includes all those little things that I previously didn’t want to take into account.
Don’t underestimate mental fatigue
Not only do I have to include physical activity in my “daily energy allowance”, I also have to factor in the things that I find mentally tiring. Reading, even if it is just browsing the internet, is draining. I have to limit my computer usage or else I am too tired to do much else!
Writing is something I have to do in small chunks and I can’t do it every day. This means a lot of planning when it comes to managing this blog. Do not underestimate how tiring mental activities can be and bring your awareness towards how you feel when you are doing them.
Treat them in the same way as physical activities: do only a little at a time.
What we are able to do versus how much we should do
The unfortunate truth is this: when you are ill with fibromyalgia, what you are physically able to do and what you should do are often misaligned. It’s human nature to push on through and do as much as you want to do or what you feel you should do.
The ability to push on, however, unfortunately doesn’t mean your body is coping and that you should be doing those things. We are incredibly resilient. We are able to do so much despite how we are feeling. We are strong, stubborn and determined individuals who will not let our illness get the better of us.
However, I have learned that in order to feel as well as possible we cannot go on living like this. Pushing on through may get things done but you will also feel terrible as a result.
We are all bound by a certain amount of energy each day
You will not be able to improve on this unless you stick within your limits and build up what you do gradually. This will mean doing very little in the beginning and I know many are not willing to do that. I wasn’t, until I had no option but to. I’m now realising it’s worth it.
I would much rather do less and live with minimal pain, than do more and be in agony.
Pushing on through can be problematic
I personally lived the “push on through” lifestyle for far too long. I wasn’t able to maintain living that way and I physically crashed; a crash I am still recovering from 6 months later.
I failed to listen to my body telling me to slow down. I pushed on through and parts of my life began to fall apart, yet I kept on going! I no longer socialised as much (if at all), I could no longer do the house work etc.
Soon my life became all about work and time out with work was spent recovering from work so that I was able to put myself back together enough to work again the next day. Weekends and evenings were spent in bed or on the sofa feeling absolutely miserable and in agony.
I told myself “I want to have a life, I have to keep going and not let this beat me”. Thinking back, this was no life. What was I achieving except from feeling terrible?
Slowing down is not a failure, it is essential
I was reluctant to slow down because I felt as though it was some kind of failure or that I was giving in to my fibromyalgia. I blinded myself into thinking that if I kept going I would overcome fibro and things would be okay.
I have since learned that this is the complete opposite of the truth. Slowing down is essential. It is being sensible. Slowing down enables us to look after our health and it enables us to live as well as possible with this illness.
Ask yourself this: are you happy? I know I wasn’t. Though I am unable to work right now, I am actually happier because I am no longer in extreme pain. My pain is minimal and is manageable. My body has thanked me for slowing down and putting it’s needs first.
Like I said above, I used to think that I wouldn’t have a life if I slowed down. Sure, my life is very limited and rest features predominantly. However, I am able to do a little of what I enjoy and I feel happier and more in control of my illness. To me it is better than constantly feeling drained and like I am fighting my body each and every day.
Pace well & you can slowly build up what you are able to do
We are all individual and how much we can do will not be the same for everyone. I have learned over these past few months that it is possible to get better control of your symptoms and it is also possible to slowly build up what you are able to do.
Taking things slowly and building up is so important. It is human nature to want to more on the days we feel better. I am realising that I need to do the same amount on good days as I would on bad days to avoid the boom, bust cycle.
How do you know when it is safe to do a little more?
I start to do a little more when the better days outnumber the bad. I increase what I do slowly. This is all relative, I don’t mean I suddenly feel amazing. I just mean that I have noticed that I am feeling a bit better than I was previously.
I don’t always get this right, sometimes I do a bit too much. However, I have become very attuned to my body and pay attention to how I am feeling. I know immediately when I have done too much and will rest more and then go back a step.
I know that I will reach a limit on what I can do but, as of yet, I am not sure what that is. I do know that it won’t be as much as I would like to do. But I also don’t want to have fibromyalgia! We can’t always get what we want in life but that doesn’t mean we can’t enjoy life.
Rest features predominantly
I have to incorporate a lot of rest into my day. Given that I was bed bound last October, I feel as though I have made a lot of progress. However, I still spend a lot of time resting on the sofa.
The up side is that I am also able to do a little more of the things I enjoy too. It’s a balancing act. My life was previously all go and I never took any time out to pause and rest until my body screamed at me to do so.
This has changed and even when I feel at my best, I still rest a lot. I know when I am getting things right because rest feels restful. If I don’t feel any benefit from resting then I know I have been doing too much.
Learn My 10 Top Tips for Pacing
These insights might be very obvious to you but they were honestly things that I overlooked. However, what this doesn’t answer is how on earth do you go about pacing successfully? What’s the best way to approach it? Read my 10 top tips for pacing here.
Pin for later:
What are your thoughts on pacing? Let me know in the comments down below.
Thank you for this post today Donna. I’ve got to save it and keep reading it over and over. I’m at the ‘hardly socialises, outside work it’s all about recovery’ stage and still pushing. It’s wrong, and I need to accept the truth in that no matter how much I don’t want to. It’s not the acceptance that is the main problem, it’s the implications of truly accepting that’s the hard part. xx
Thanks Anne, you and me both. I need a reminder to stop over doing it. Hindsight is a wonderful thing. I wish I had slowed down at the beginning of last year and gone part-time at work. Probably would have avoided all that I’ve been dealing with these past 10 months! In a sense it has been a good thing though as it’s made me appreciate and accept this illness.
Funnily enough, doesn’t that all sound healthy for EVERYONE? I have routines and that’s how I pace myself. And it (mostly) works for me because I always did like my routines. But yeah, it’s a pickle. Great post!
Thanks Phoe, I agree. I think everyone is too busy and go, go, go all the time. So yeah, everyone would probably benefit and feel more relaxed from pacing.
Thank you so much for your blog. Pacing and life with chronic pain are still very new to me, you gave me some good thoughts and ideas how I can try to balance everything.
Hi Kaisa, happy to hear my posts have helped 🙂
Pacing and not pushing through is so important for loads of illnesses. Unfortunately it’s not normally something we realise until we’ve learnt it the hard way. I pushed through and nearly 5 years later I’m still no where near back to the level I was. I’m glad you are seeing some small improvements now though.
Gosh yes, hindsight is a wonderful thing. I think the reason behind learning the hard way is that most of us are in denial that our life has to change. We only accept it when we are given no other option but to. Or at least that was the case for me anyway. I feel like I won’t get back to level I was either but I am hopeful that I will be able to reach a new kind of normal, I’m just figuring out what that will be 🙂
Great post Donna, you explained pacing very well. I pushed through it for almost six years after being diagnosed. I thought I could just live a normal life. I crashed BIG TIME and the crash lasted almost 3 years. I have got pacing down when it comes to physical activity. My problem is pacing when it comes to mental activity and I was so glad you addressed this in your post. I am driven to stay mentally active, always have been. So I get really frustrated when writing a blog post or reading makes me feel so drained. I look forward to reading your tips.
Thank you. You just described what I went through perfectly. I am working hard to overcome that big crash, which happened to me last year. It made me realise things had to change. I don’t think I appreciated just how life changing fibro is before that. Yes, mental fatigue is a problem. Writing is very tiring and so is reading. I have to limit how much I do but I am guilty of doing too much and not switching off soon enough- work in progress! I hope you enjoy my tips tomorrow 🙂
Great blog, I need reminding soo often! I am glad you mentioned mental fatigue. I have trouble with long phone conversations, when I can’t wind up the conversation, or face to face, it took me a long time to realise this! Loud-ish noise too. Highly detailed painting which I love doing is also tiring. But, your words are really useful, thank you. Hope you’re not too bad today. Xx
Thank you Sally. Yes, it’s ridiculous how tiring and draining simply talking to some is, isn’t it? I do think we are much more sensitive to noise, light, smell etc and sometimes it can be too much. Intense concentration really wipes me out so I understand why such detailed paintings would be tiring for you. At the same time, I am guessing it can be quite therapeutic too. I am having a relatively good day today, thank you. I hope the same it true for you and thank you for your kind words 🙂 x
Fab post Donna, words ring so true for me. I still don’t manage pacing all that well..but I do manage to say ‘no’ more often thankfully. I do push myself with blogging tbh, I need to re-schedule the way I do things.
H x
Thanks, Heidi. Pacing is so difficult, isn’t it? I think saying no can be the best thing for us sometimes. I’ve reached the point where I have stopped pushing to blog because it was really starting to have an impact on my health, sadly.
This is one of the best fibro articles I have read, and I have been learning how to live with fibro and pace myself for almost 20 years now! Much wisdom here, folks, from Donna who has ‘been there and done that’. Fibro is an energy thief–true. Pacing is a huge part of learning to have a quality life in spite of it. But if we are open to it and listen carefully, Fibro is a great teacher as well. Yes, some days it really sucks when all you feel you accomplished was breathing in and out and surviving all day. But, during the times that you must rest and take care of you–like it or not–there are opportunities in that for more time for things like prayer, reflection, cultivating an attitude of gratitude for what you still are capable of doing, what you have and that you are getting better at living with this and managing it so it doesn’t manage you. These are huge blessings, friends, out of something we would have never chosen for ourselves when pre-fibro it was all about the doing and the checklists and the goals! We learn we are not in control, but we never have been anyhow–we just bought into that lie when we lived exhausted with our WonderWoman capes flapping in the wind! The fact we can’t do it all is ok. Why? We were never meant to do it all in the first place!!! Fibro forces you to choose and prioritize what is most important in your life every single day. We must learn to choose wisely and learn what really matters in the big picture. When we learn to accept that and work alongside of that reality, we can regain the peace that was stolen from us and it eases the frustration of remembering life before Fibro and what we could cram in a day! Donna is spot on here. Learn to listen to your body, decide what you can reasonably do today with what is most important and focus on that. Make peace with yourself and forgive yourself for no longer being Wonder Woman. Try hanging her cape in the hall closet and leaving it there. I promise over time that you will learn and grow through this in ways you never could otherwise. And then, most days you will find yourself surprised by the fact that you would not choose to put that cape back on if you could! When that happens for the first time, smile, go make yourself some good hot tea and cuddle up in your favorite blankie. And know, my friend, you are still growing, becoming, and learning. You are still capable, you are still strong in ways others can never know and you are uniquely beautiful and wonderfully created. You are ok, and it is ok, and life is still good in spite of the aches, pains and fatigue that try to crush your spirit. Hah! You are like a Phoenix bird who rises from the ashes…okay more like the bed or couch…but you are a survivor AND a thriver in spite of the challenges Fibro throws at you daily. Thank God for what you can do and that He helps you do, rest in Him when you cannot do and let your heart and soul find precious times of refreshing and strength on those slower days in and through Him. You will find rest and peace for your soul and that is a huge part of a life lived well–one that many of your Wonder Woman healthier colleagues may never ever slow down long enough to learn. ????
Thank you so much Leigh, I am so glad you agree with what you say. And wow, what a well written and thoughtful comment. You share so much wisdom here and I agree with you 100%. I can completely relate to trying to be the Wonder Woman and do it all in spite of how I felt and I definitely feel this played a big role in me becoming as sick as I did. Being forced to slow down has so many benefits as you say. There are many opportunities I would never have had and many hobbies and passions I would have never thought to try had I not been forced to slow down. Though I wouldn’t wish this on anyone, I feel I have changed as a person because of it… and for the better. Thank you so much for sharing 🙂
Hi Donna
Thank you for this. It has really made me think about how much I am punishing myself because I feel I should be doing more. I always want to apologise because I have done nothing all day, but you’re right, we often forget how the day to day tasks add up. I have had Fibromyalgia for about 10 years and this is the first time I have read something that really makes me think. I realise now the harm I was doing myself trying to ignore my Fibro and push on through. I have now had to give up work completely and, after having had a really successful career, feel as if I’m not contributing at all. My husband is great and doesn’t expect me to do anything and often gets annoyed at me for trying to do too much, but that guilt always surfaces. I’m really going to try to take on board the things you have said and try to pace myself.
Thank you once again, like others, I will be reading this again and again.
Hey, Alison. I think guilt is one of the hardest things to deal with and it sounds like you have been quite hard on yourself. I can empathise with your feelings on not working, it is something I too have struggled with a lot. It’s great that you are having a rethink and I hope you can learn to be kinder to yourself. I am sure you are doing the best you can and I think looking after ourselves enables us to offer more in the long-run too 🙂
Wow, what an insightful article and also what other FMS sufferers said in the comments! I’ve had FMS for over 27 years now, it went undiagnosed by any doctor I ever saw until I demanded to see a Rheumatologist a few years ago. I worked full time until my body would only allow me to function one day a week, that’s how extensive my “push through” attitude had got. Needless to say that was my crash and I’ve been struggling ever since. I realize after reading the above info that I’m still in crash mode with total adrenal fatigue. I’ve been hard on myself wondering, like everyone else in my life, when I’m going to “snap out of it”! Every small movement and task is so exhausting. I’m very grateful to read this post as it’s given me “permission” to be Kinder and more forgiving of myself. I have lost friends, but realize those friendships were too toxic anyways, which I was very easily able to let go of. Thank you for all the inspiring words….the hardest thing is not having any real support navigating this disease! ☺ I hope for better days again as I begin to pace myself more effectively.
Hey, Laurie, I can relate to so much of what you say. It’s great you’ve had that realisation and I hope you do learn to be kinder and more forgiving of yourself. Learning to let go is also hard, even when you know it is for the best. Good luck with pacing!
Donna oh my sweet Donna. Where have you been since my crazy, confusing health decline had started. I am soo relieved to know that I am not the one that is imagining or making up diagnosis for myself. It has been my loved ones. They were so inconsiderate from the get go. Telling me to stop letting my mind play games with me. Thank you for reassuring me that I have been right all this miserable time.
Hi B.B. Crazy, confusing, health decline… I can so relate to those words! I am so sorry you have not received the support you need from your loved ones. That must be very hard for you. You are definitely not imagining this and you are certainly not alone in your experience. Sending gentle hugs.
Donna, I was in tears reading this. It was as if I had written it myself. I was just diagnosed with fibromyalgia in May, after having been in total pain since 2009. Since that time, I have had to quit everything that I loved to do. Work, gardening, woodworking, painting, etc. My rheumatologist and her nurse explained everything to me about pacing. I feel like I’m being lazy and have to give myself “the talk”. I’m learning that it’s not day by day. It’s minute by minute, hour by hour. Thank you for being so open. I hope you are having more good days!
April
Hi, April. I am sorry to hear you have recently been diagnosed with fibro but I appreciate that it must be a relief to finally understand what is wrong. It’s so sad that you were left in limbo for so long. You are most definitely not being lazy and slowing down is the one thing that can enable us to actually be able to do more. I find it helpful to plan rests frequently throughout each day. Thank you and I hope you continue to enjoy my blog 🙂
I have had RA since childhood, misdiagnosed and untreated till 5 years ago. My rheumatologist is now talking possible Lupus as well. Also have fibromyalgia. Have been battling for balance a couple decades, learning about pacing myself. This is very difficult as the sole caretaker of my chronically ill mother. Have recently gotten into spooning. I get 10 spoons a day. Each task uses so many spoons. When my ten are gone my day is over. I can borrow from the next day, but then that next day ends sooner. And it is something my mother cannot understand. So of course there is the mental strain of her nagging about my “laziness”. It really is a learning curve.
I am sorry to hear that you have had many misdiagnoses. It must be very challenging for you to pace and care for yourself along with your mother. I think the spoon theory is really great. It’s a good way to bring our awareness towards managing out energy and helps others to understand too. You are most certainly not lazy and I am sorry you are made to feel that way. You are doing the best you can and keep reminding yourself of that 🙂
It is discouraging that having a conversation with dear friends and family takes so much energy. I just went to my husband’s 50th college reunion and thought I was taking enough rest breaks. Unfortunately, I have had a large flare because of it. Meeting old friends and engaging in great conversations is fun but it came with a great cost.
Oh, I can completely emphasise. It’s amazing how draining holding a simple conversation can be. I am sorry to hear that you have suffered following the reunion. It sucks that enjoying ourselves comes at such a cost 🙁
Thank you! Your message made me feel as if I’m not alone! Very well written! I look forward to reading and sharing more of your site. I’m new to blogging but I will definitely point to your site!
Thank you for your supportive comment Suzanne. I hope you enjoy more of my friends posts and good luck with your own blogging venture!
[…] ourselves is key, as spoonie Donna writes on her blog February Stars, “Pacing includes every single activity that you do in a […]
[…] all familiar with, but maybe not in the context of living with fibromyalgia. I think Donna over at February Stars puts it really well by saying pacing is “doing a little at a time and breaking down tasks so […]
Hallo Donna,
Ich finde mich zu 100% in deinem Bericht wieder!
Ich habe seit 20 Jahren chronisches Gelenkrheuma und vor 4 Jahren wurde Fibromyalgie diagnostiziert!
Da ich zuletzt in Jobs gearbeitet habe die körperlich sehr anstrengend waren bin ich viel zu lange über die Schmerzgrenzen gegangen.
Seit 4 Jahren bin ich jetzt zuhause und kann nicht mehr arbeiten. Langsam lerne ich auf meinen Körper zu hören und mir meine Kraft einzuteilen. Es ist unglaublich was diese Krankheit auch psychisch mit einem Menschen anrichtet ( durch die vielen Symtome). Ich bin ein völlig anderer Mensch geworden!
Ich kämpfe um eine Erwerbsminderungsrente in Deutschland was sich als so gut wie unmöglich erweist.
Hallo Sabine!
I relate to what you say about pushing yourself beyond your limitations in a physically demanding job. That is exactly what I did (though it was a decade ago now!). And, like you, I was forced to give up work for a long time. I truly hope you get the help you need and win your fight for disability pension. I wish it wasn’t such a battle and appreciate how worrying and exhausting it must be for you.