Ok so after having one of the worst days ive ever had pain wise on Saturday since I started off with all these problems a year ago, I had a reasonable day yesterday where I felt like I could move a bit more freely and although I had the usual aches a pains I was able to get a few things done, that id been putting off for a few days until I was feeling up to it. But now I wake up again today and I can hardly move my neck, and my hips are so painful just cant get any kind of comfortable position.
So how do people cope, I mean I haven't been able to work for 12 months nearly as the pain most days means I am so limited to what I can do. But on the days I feel a bit better I want to get all the things done that I haven't been able to as I have been so sore. And then I suffer again even more the next day, so it just seems like a vicious circle of pain, and I don't really know how to find a balance.
12 Replies
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Hi there. I find I just do what I can when I can. I know it is so easy to overdo it on good days and then suffer for it, but try and pace yourself and prioritise the jobs you have to do. Enlist the help of family and friends where you can too.
Try and monitor yourself over a few days and find out when you are feeling your best and then do something on the list. I feel awful first thing but find as the day goes on and the meds kick in I start to feel less uncomfortable, but by the evening I am back to feeling awful and achy.
Hugs to you xxxxx
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Thank for you reply, yeah I kinda know I have to learn to pace myself, I just tend to get carried away on my good days as it feels so amazing to be able to move around more without as much pain!ha then I just always regret it the next day.
As I still don't have a diagnosis and this is all still new to me I am still trying to understand what is wrong with my body and what it is capable of or not as is often the case.
I guess it is just a steep learning curve and trial and error.
hi! seems to me you are lurching from one end of the scale to the other, super woman one day to super tired the next!
Your body is just experiencing extremes and nothing in the middle!
A very wise woman once said to me to get me to chill out more ''if you were hit by a bus - with your dying thoughts would you a) wish youd hoovered, cleaned and dusted more or b) wished youd spent time with your family and friends, laughing and loving''
Hi Lilianclova -- its all about "pacing" yourself and finding a "happy balance" -- however this is much easier "said than done" as I know that we were all used to being able to do everything and being "on-the-go" all the time! You have to be strong with yourself and others around you and learn to say NO (in a nice way of course!) And of course you need to stick to this everyday and "not go mad" coz you are having a "good day". I have posted an article i saw yesterday in the Telegraph in the "blog" section -- look at it and look at the article "the pain toolkit" (you can order a copy over the phone on 0300 123 100) - it is well worth a read and explains all the "tools" you need to use to live with chronic pain Good luck xx
I think day to day pacing is the key. On good days I think in terms of saving up some spoons for the worse days ... or for special treats.
On the better days you really have to not overdo it .... so much easier said than done I know ... and just enjoy feeling that little bit better.
I must admit sometimes I break all the rules (eg to go to a concert) and pretty much plan to be ill for a week after ... but it is a price worth paying for living a little. For example this weekend I went to a friends Birthday party and had a wonderful time, I know that the party coupled with a visit to the diabetic nurse will leave me pooped for this week; but I accept that price (well I'll try not to whinge tooo much lol).
I would echo the others, although I'm still learning how to pace myself, and regularly don't quite manage it. The temptation is always to get as much done as possible on a 'good day', and we always forget that this will lead to a string of bl**dy awful days to follow!
Try not to beat yourself up over it, and do the work a little at a time, even on a good day. Take plenty of breaks. If you find something that works for you, let us all know so that we can try it! As Julie said, sometimes, you may have to accept a few bad days in order to really enjoy yourself, but I think you get used to planning those events in.
Good luck!
Sara xx
Thanks so much for all of your replies.
Yeah when ever I do something out of the ordinary, for example I went to my nephews birthday party a few weeks ago and I was still suffering several days later. It takes so long to recover and it was not like I went and ran a marathon (although I felt like it the next day) I made sure I sat down plenty yet the standing moving around playing with the kids all had such an effect on me the following few days.
I guess sometimes we just have to take the rough days otherwise we won't do anything, I already don't have a social life and haven't seen my friends in so long, as I think they get fed up of me keep cancelling if I have a bad days, so eventually they stop asking. I find it is very hard for people to understand and even very hard to explain what is wrong with me!ha
xx
I agree with everyone here, and do the same as everyone else and suffer because of it as everyone else but I do try and pace myself, the trouble is, it feels so good to push the bar and be able to do something you have'nt been able to do in such a long time does'nt it, even if you stumble out of bed the next few days and realize that you'd rather not even bother trying, sorry no my advice is not really good, I know we all have to pace ourselves xxxxx
The only way I can manage to balance having Fibro and its symptoms and living my life is to pace myself. I learnt Pacing Therpy at a local CFS Clinic and it changed my life. I started coping well with balancing acitivities (anything from getting up, showering, washing and drying my hair, shopping, housework, gardening, baking, cycling, swimming, walking, visiting relatives and friends etc = activity, anything requiring physical effort) with rest periods.
By balancing an activity with a rest period after (sometimes only 10 minutes, 15, 20 or 30 depending on activity), I found my energy levels went up and my general well being improved along with my ability to cope with my pain and other symptoms.
The important thing to remember with pacing is that it's not possible to pace during a flare-up. I have to wait for the flare to pass and when I feel a bit better then I start pacing all over again.
Since I started pacing I haven't overdone it like I used to. I recognise the signs that I've done enough and I need to rest. I used to burn myself out and end up in bed for two days. That doesn't happen very often now, the only thing that sends me to bed is a flare-up or a migraine. Then, again, when I feel better I start to consciously pace myself again.
Life isn't so difficult if we can pace ourselves and have regular rest periods/breaks.
A nurse told my husband to stick red dots all over the house.....when he saw one he was to take a break. It worked as a physical reminder to him to rest. We all tend to get carried away when we feel good and end up doing too much. This method worked for him.
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