It's easier said than done!

Hi guys,

I am truly trying my hardest in getting to grips with this frustrating fibro thing but what I can not achieve is finding the correct pace for myself.

I found myself needing to have some physical support when I pause on my rare days out as queues were a nightmare as I constantly felt like I would topple over!

So I asked my physical therapist to measure me up for a walking cane, now although I have a simply "stunning" stick I can not walk at the pace my body requires me to go at as my mind screams NOooo.

With the stick I find I tend to try to walk normally I.e. too quick & without the waddle fibro has blessed me with when I tire.

I also find that if I have a very rare reasonably good day this is followed by a day of fibro reality even something as simple as stroking my fur-babies is very uncomfortable for me to do.

I have been told I really need to learn how to pace myself in everything I do but it's so hard when you get a rare glimpse of what you use to be.

Any helpful hints on how to manage my pacing issues would be gratefully appreciated. Hel.x

11 Replies

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  • Hi Hells-Bells

    I am so sorry to read that you are experiencing this problem, and I genuinely hope that you can find some resolution and relief to this issue. I was wondering if you overdo things on your good days? As this could be the reason that you then struggle the next day?

    I genuinely think that we have to be aware of our limitations to not suffer from the nasty effects that Fibro gives us. To do this I think that we need to analyse the way we walk, and how, and at what speed. I think the answer to this is to be completely able to say to ourselves that ''Hey, I am walking too fast and I need to slow down!'' And thus slow down. I am not saying that this is easy, but I sincerely believe it is what we must do for ourselves, and pace what we are doing. I know that life can be hectic, and we have so much to do, I know from experience. However, if a task will take you 30 minutes, then give yourself 40 minutes to do it and then have a well earned rest before doing something else. I truthfully believe that this is the best way to do things.

    I want to sincerely wish you all the best of luck, and I genuinely hope that you can find the answers that you so desperately desire and deserve.

    Good luck

    Ken

  • Morning. The doctor told me to pace my life. I have a job and look after my grandchildren. She said well the job does not help, but I have only one income and who would pay my bills if I did not work. I honestly don't think anyone understands or cares unless you go through it yourself. If I have the odd five minutes I like to sit and cuddle a hot water bottle, which comforts me. You are probably not doubt tired too, as you cannot sleep. I really sympathise with you as everyone will agree it is not nice. When the spring comes maybe you can sit outside and try and get some sun. Look after yourself the best way you know how. Karen xxxx

  • Pacing is ridiculous for anyone who needs to work.

    I cannot talk about fibromyalgia any more, unfortunately I rearly read this forum any more either for the same reason, I just get so angry.

    What right have the medical profession in this country to ignore, belittle, a and chose to not accept as a serious illness.

    If we lived in Canada we would be treated in proper clinics to improve our quality of life.

    But in England we are just treated as lazy. Or we are given daft ideas like pacing but no sick notes or pip to support our financial commitments.

    It's time we did something about this other than just sympathise with each other.

    Any ideas anyone ?

  • Yes I totally agree. It just makes every day easy things like putting your coat on, or lifting a kettle such a task. It hurts when I walk up the stairs or down, my legs give way with a tremendous needle like pain. I have also got a burning pain in the side of my foot, which my doctor said it is the shoes I am wearing. walking around with pain makes you weary and unhappy, but to the outside world if you can get around then you seem ok. I am not sure if this is linked but down days are frequent. sorry to moan. Love Karen xx

  • I have a folding stick that used to be black, until i stuck glittery butterflies all over it.

    Yes i do know exactly what you mean. I used to love walking, the faster the better And still tried to keep up the pace after fibro hit.

    The result was a life of feeling drunk, nothing functioned properly and once passed out.

    Now i have learnt to slow right down and to stop often to get my breath. It takes forever to get some where and i do wobble, like a weeble, when walking. but hey i might be going at snails pace but at least i get there.

    I do have a powered wheelchair for the times that i am going to do more than just one shop.

    But that again is part of pacing.

    It is a matter of listening to your body and recognising the signs that you need to slow down or stop for a few minuits. With me i start to go light headed and my thinking gets slower.

    Good luck to you in finding your best coping strategey.

    Hugs sue xx

  • I can absolutely understand where you are coming from as it is so tempting if you have an easier pain and fatigue day to try and cram in all the things that you don't normally have an opportunity to do but unfortunately that normally makes us suffer a rebound effect of feeling awful for days afterwards. I would try to think ahead for each day and do a little list of those things that have to be done and do those in whatever part of the day you know you will be feeling the best, for me it is normally between about 10-12.

    If it is a big task don't try and do it all at once but perhaps do half an hour and have a break for 10 minutes and have a little rest and drink and then when you have recovered your energy start again and do the rest. It doesn't have to be every half an hour it is what suits your body. Try not to be tempted to over stretch and think, I will just do this before I pack up as that is the road to more exhaustion and pain. I also try to alternate tasks into those that need energy and movement e,g, cooking, washing up etc with those like paperwork and phone calls where you are doing something but you are resting at the same time. If you have a phone by your bed you can always get comfy on it and spread your paperwork around and make you phone calls and you are giving your body a rest at the same time. This alternating between those that need brain and those that need brawn also helps with fibro fog as the mind doesn;t get too tired. Give yourself little rewards for doing tasks that you find difficult as I am sure that helps to get through things.

    Don't be too proud to ask for help with difficult things if someone offers as going shopping is so much easier and enjoyable if you have someone to carry your parcels. I don;t know whether there is a big shopping centre by you but if there is they often have a mobility centre where you can hire a mobility scooter or wheelchair. Large supermarkets will allocate a member of staff to go round with you and help you shop. I only found this out in Tesco when my husband was ill and we desperately needed some things that day so there was no time for an internet shop. I usually don;t do any big shop on my own and got half way round and had to ask a member of staff to reach some things off a higher shelf for me and she commented on how ill I looked. I briefly explained and she said the next time I should go to the customer desk explain and they would try and help.

    Hope some of this helps.x

  • Hello Hels,

    my step daughter has a wheeled walker that is also a trolley basket and a seat. I have to say that the walker is a godsend when queueing as it is a seat. It is easier when shopping because it is self supporting; I never know what to do with the stick when I stop moving, and it holds a basket for you so easier than a trolley unless you are buying bulky items. It also helps with pacing because you can stop and take 5 mins any time you want.

    I have learnt about pacing the hard way too; now I have some online games or mobile apps which take me a few minutes so I break chores into chunks and do a bit, then have a tea or something and play a few games. You can use a quiz book and a biro too! I can tell how the 'fog' is doing by noting my performance, and I hope it is reminding the grey cells that they have a purpose, even if it is not the same as before I became ill.

    My GP advised me to measure my activity and achievements against the here and now, not my past self. I guess that is advice everyone should take because the same thing happens to everyone as we age and comparing my 50yr old body to my 20yr old one is only going to disappoint.

    I have rediscovered crafts I never had time for before, so that I have a physical achievement that I am proud of no matter how slow I was making it. It is also useful for making the resting time not feel 'wasted' so I am recharging my body and self esteem at the same time.

    My mother has offered me a wheeled walker so I realise the transition from stick to walker is a difficult decision, which I am currently resisting but think I just talked myself into, so when I see her later I will give it a try.

    All the best.

    xx

  • Many thanks for all the wonderful replies it truly helps knowing others that suffer the same daily pitfalls as oneself.

    Being able to give, receive tips, helpful advice & of course amazing encouragement helps us to get through our daily struggles....being able to conquer the molehill before it becomes a mountain is always a great bonus!

    Thank you all once again, Hel.x

  • Listen to your head not your heart. Its your heart saying I used to walk like this etc... Please don't get angry or upset when I say that it sounds to me that you haven't accepted the fact that you have fibro. Your heart still wants to do what you did before you got it. The fact that you recognised the need for some kind of support when out walking suggests that part of you is recognising that you need some help but its fighting with the part of you that doesn't want to accept that this awful illness has put restrictions on your life. Its not going to be easy but when your heart says ....I used to to able to do 'whatever it is at the time' , listen to your head . you may have to stop yourself and make yourself listen, but over time it will get better.

    Carol x

  • There's lots of good comment there. Don't overdo things on your good days, just scale back a little. My friend who had cancer said she continually adjusted to a new and changing idea of what normal is. It was then easier to get on with life, such as it was, and I'm sure her quality improved as she wasn't spending energy on "what ifs".

    It can be a frustrating process but don't give up. Hugs

  • Hi there it's definitely easier said than done. I get so frustrated with my Fibro self at the stuff I can't but should be able to do. Have you read 12 Spoons Theory by Christine misreading? If not give yourself a break and have a read. Hope you enjoy it

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