scared to do too anything even on a good day!

frogmella
frogmella Member Posts: 1,115
edited 29. Sep 2012, 03:35 in Living with Arthritis archive
Hi,

I wondered how many of you are frightened of causing a flare up by overdoing things on a good day? I don't want to annoy anyone by talk of good days when I know for some of you they are rare or non-existant, but I just could do with some words of wisdom really!

I have spinal arther and I had a fairly traumatic journey with my back so far. I have pain in my back and nerve pain to boot. The nerve pain is constant but is being dulled by gabapentin.

I had very little pain over the weekend, just the foot pain really, no back pain which makes a lovely change. Thing is I was too scared to take advantage in case I caused a flare up and the knock on effects on work and this week! When I have a flare really all I can do is lie down taking codeine and waiting for it to pass.

So, I carried on as normal, ie - I didn't do much. How do I manage to get to a place where I can take advantage of good days without worrying about the possible bad days to come?

I think my problem is that I am terrified of the pain when it is bad combined with worrying about letting work down. I think I knew that going back to work would cause this issue because I have been like this before. The year before last I was pretty ill at the end of the year (I teach) but I went to work anyway just cut everything else out of my life.

If I wasn't at work I would have gone for a long walk with the dogs rather than the usual shorter one. I might have gone shopping too. But because I have to go to work I feel that I had better not, just in case. If I didn't have to go to work I could deal with the flare by taking to my bed and remembering the fun I had had!

So, any advice on sorting my work-life balance? I only work 25% and I really don't want it to impact so much on my personal life.

Thanks for listening.

Helen

Comments

  • knuckleduster
    knuckleduster Member Posts: 551
    edited 30. Nov -1, 00:00
    Hello Helen

    Difficult to advise as I don't know about your specific back problems. However, in my case with my back troubles, I do things in short bursts and then do something else so that the position changes and if things begin to hurt then sit and rest a while.

    I'm sure you will find a happy medium and be able to enjoy those good days as well as go to work.

    Janet xx
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    Hi Helen, I know exactly what you mean. I've had RA for three years now and it's only recently I've started to do more stuff. I was scared I would aggravate things or wouldn't be able to get home. Consequently I got isolated, bored and frustrated.

    I don't know if you are on meds or not but the perceived wisdom is that you take your pain killers before you start doing anything and continue them after. There is a theory in pain management that says you should try and do the same amount on all days so you don't get into a cycle of overdoing it on good days and then flaring as you say. It's called pacing and I'm not brilliant at it but when I do manage to do it, it helps.

    After a while your confidence builds and you will find you can do more. If I have something on that is particularly potentially painful and exhausting but I want to do it, I just do it and suffer the pain after. I know that sounds contradictory to what I said above but sometimes you've just got to get out there and enjoy yourself!
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
    It is a difficult one isn't it?
    It takes a long time to learn how to read your body, and pace yourself accordingly. Even then it's oh so easy to over do things. Sometimes I know I'm doing too much. I know I'll suffer later, but I consider the payback worth it, to get a bit of my old life back, even for a short while. On the few occasions I have a good day, I do tend to make the most of it. Silly maybe, but that's the way I am. :lol:
    Only you can really know what is right for you.
    Wishing you well,
    Numpty
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I do a bit then rest a bit, and I don't take any dullers because the pain can be a useful feedback if limits are being reached. I try to stop when I think I can do more and try to keep activities to a constant level because, as salamander so wisely says, it is so easy to overdo things if one is feeling a little better or brighter and then you're stymied for the next couple of days while you 'recover'. I don't have back trouble but that must be so difficult to manage as our backs are crucial to any form of movement. I think it is case of do what you can when you can, adjust how you do things so more can be achieved (I cook and iron sitting down to ease the strain on knees and ankles) and just generally pace yourself. Despite knowing better I overdid things at the week-end, but no matter, it was worth it! :) DD
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi Helen, I understand exactly how you feel, a wise friend helped me with this many years ago. It's all about knowing your body, listening to your body and it will tell you when it's had enough. I'm still naughty and push myself after I get the 1st niggle which is my body saying ok had enough for today and sometimes get the problems afterwards. So do a little of what you want to do and when you start to feel a niggle somewhere you know that's your body saying ok that's enough. Everyone's body is different! Good luck teaching yourself! Hope this helps.
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hello Helen
    Im not going to much help, like you I have an arthritic back, and nerve pain,the times I have over done things because Im having a goodish day...and then I really suffer, and it is usually days, but when I have done what I wanted to, I am so proud and pleased with my self I go and do it again...is this what they call never learning...or fighting back... :? :)
    I do hope you are not in to much pain today xx
  • frogmella
    frogmella Member Posts: 1,115
    edited 30. Nov -1, 00:00
    Hi!

    Thank you for all the replies and advice. I am glad to see that most of you don't get it right all the time either (obv not glad that you suffer, but glad that I am not alone in doing too much!) and that you all think it takes time to learn. I think part of the problem for me is that I don't tend to hurt at the time, I hurt afterwards. If I actually start to hurt I have done way too much! Then I am stuffed for days! It is difficult to get the balance right.

    I should say that I am fairly bloody minded and I am pretty active - I walk every day with my dogs, even though I only do about 35 minutes now, and I swim 3-4 times a week. I have cut down my lengths since going back to work and that has disappointed me a bit. I have also started pilates. The way I see it I am doing all the things I have been told to do so that I can at least delay any more surgery. I make myself go and do the exercise even when I don't feel like it. I think that sometimes I can be a bit tough on myself, but there is only me that can keep this body going!

    I do take meds - gabapentin, naprosyn, paracetamol (and codeine when I have done too much!!).

    I think I am just new to the idea that I am not going to get better. Until April I had thought I had something "fixable" but now I know it is arther it is less so! It is quite a lot to get your head around (as I am sure you all know!) and I am finding it hard not to be irritated with my limitations. I am sure that I will get there in the end.

    Thank you again for all your support.

    Helen
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    I think dealing with this is one of the things on the arthritis learning curve, I know for me that I frequently fell off that tightrope when I first started and fear stopped me taking forward steps, however, in the end you work out how to bargain with arthritis. You don't always get it right, sometimes you exhaust yourself and mess it all up but if you give it a go, eventually you learn to read it and work out your limits and how to use the good days. Or that's how it goes for me at least. Good luck learning to dance on the tightrope too! LV xx
  • ShulaArcher
    ShulaArcher Member Posts: 174
    edited 30. Nov -1, 00:00
    Hi Helen

    I was really interested to read about your situation. It sounds as if you are doing everything we sufferers are advised to do in terms of exercise, etc. As LV says, we are all "dancing on the tightrope" and all dancing in different ways!

    You'll know from teaching that people learn in different ways and if a particular technique doesn't suit an individual, then that person won't learn. It'll be the equivalent of a right-handed person writing with their left hand. For myself, I'm aiming to listen to all the available advice, find out about every possible technique that might help me, give it all a good try and see what works. For example, I've been swimming today - had back pain 8/10 before swimming and 5/10 just after but now back to 8/10. I'm quite happy with that!

    One things I would say is please consider not expending all your energy into work. I don't like to look back and regret anything, but I seriously regret doing that and leaving no energy for anything else.

    Kathryn
  • Petitesse
    Petitesse Member Posts: 62
    edited 30. Nov -1, 00:00
    I am struggling with this too, but I seem to be completely unable to find any patterns in anything regarding my flares. It is like my illness just has a life of it's own.

    I have been feeling pretty good for a while and as I am busy with stuff on the computer, I haven't done much exercise at all. I go for a short walk every day to get a little fresh air, but that is it.
    However, 2 days ago pain in my leg came back and I can't walk now. I didn't overdo anything.

    For me the flares are like being struck by lightening. I can be walking down the street feeling no pain at all and suddenly feel a sharp pain in my ancle and be completely unable to walk. It can last from 5 minutes to several weeks.

    There doesn't even seem to be a connection between the pain I feel and whether or not my blood tests are good and whether my ancle is swollen or not.

    After 6 years with this illness I am still 100% clueless... :(
  • frogmella
    frogmella Member Posts: 1,115
    edited 30. Nov -1, 00:00
    LV-dancing on a tightrope- I like that! It does seem to describe life at the moment! I was never any good at gymnastics! :lol:

    Shula- One of my worries is exactly what you finish with, I really don't want to end up regretting spending what little energy I have on work. I am 36 now, my mom died at 55 from breast cancer. I always keep that life is too short in the back of my mind, and I think that if it comes to it I will give up/change work. I just wanted to go back and see how I do so that I don't feel that I just gave up. Like I say, I am quite tough on myself, pity my students ;)

    Thanks, again, for the input. I value the advice.

    Helen
  • JuliaHod12
    JuliaHod12 Member Posts: 456
    edited 30. Nov -1, 00:00
    Hi Helen

    You're not alone.
    I have struggled quite a bit since going back to work post TKR........and the pain/tiredness strike me with a vengeance when i get home.
    Its a tightrope indeed..........I need to work both for my sanity and for the salary!
    I wish i could do more and sometimes it gets on my wick, yet other days i shy away from activity as I dont want to be in too much pain!

    I was off work today and went to the cash & carry with fluffy.......only about an hour wandering round but i was completely exhausted when we got back :-(
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    it is such a hard one as every day differs i can be ok walking down the street easy as pie (well as easy as it ever gets) and can feel my self stiffening up no rhyme or reason just because have bad neck some times can cut hedge ans other times even trying can cause flare but in the end you find a balance but house still needs good bottoming as last year just working was all could do now can manage short days out and more cleaning will catch up eventually but got to pace my self val
  • Petitesse
    Petitesse Member Posts: 62
    edited 30. Nov -1, 00:00
    Hi again Helen,

    I have been pondering over this question today.
    I think the fact that you are concerned about the effect on work if you overdo things shows you are a very responsible person.

    I understand completely that if people with arthritis MAINLY have good days, then it could be seen as irresponsible to overdo things all the time and compromising the ability to work. Just like it would be irresponsible for anyone to go out drinking two bottles of wine on week days all the time.
    But if good days don't come by so often, then I think we have every right to make the most of them!

    It is easy to feel that you owe your work place 100% commitment. But that doesn't mean that the work place can require 100% of all of you. Healthy people don't allow work to take up 100% of them either.
    I think you should always allow commitment to have a happy life and grasp the opportunities you get.

    I also think that finding the balance of things is personal for everyone. The balance between being responsible towards work and being responsible to oneself to have a happy life.

    I wish you well finding your personal balance. And most of all I wish for you to not judge yourself too harshly when ever you feel you get it wrong.

    This always crack me up: "Come to the dark side, we have cookies!" :lol:
    I think it is okay to go for the cookies sometimes. :wink:

    Hugs Pia.
  • frogmella
    frogmella Member Posts: 1,115
    edited 30. Nov -1, 00:00
    Hi again!

    What a lot of replies. Thank you.

    Pia- Thank you for your words. They have clarified my thoughts I think. I think that you are probably right - why shouldn't I grab at the good days? But, as you say, I feel my responsibilities a lot. I have asked to be refered to pain management and I hope that they may help me get my head around being allowed to enjoy myself. I am sorry that you have had such a bad time the last two days too. I think that sometimes my flares are for no reason too, but as mine is spinal, I probably just moved the wrong way and didn't notice at the time!

    Julia- Going back post op is hard. After my fusion three years ago I went back at 11 weeks (too early) and it took me months to feel any better. (not that it lasted long. signs of infection began about 6 months post op but weren't picked up on/believed) I would often stay in bed until the very latest I could then go back to bed when I got home! What a life!! It's funny how going shopping is so tiring, that is the first thing I drop on a bad day!

    val - housework? My house is a tip! OH is "between jobs" so theoretically is in charge, but his eyesight must not be as good as mine ;) I have been told not to hoover, do the dishwasher etc so I have to just look at it all. I just try to ignore it. When he gets a job I will get a cleaner in to bottom it and then try to do a little bit each day. I am incapable of starting it without just doing it all! Must learn to pace myself soon!!

    Thanks again. Off for a swim then a cookie!!

    helen
  • ShulaArcher
    ShulaArcher Member Posts: 174
    edited 30. Nov -1, 00:00
    Hi Helen

    Have been thinking of you again today. Are you able to get to one of the Arthritis Care Challenging Pain courses? I went to one last month and it has rather changed my life around, if that doesn't sound too dramatic! Lots of practical advice and the opportunity to consider what steps you can take to improve the quality of your life.

    Hope you have a good week-end.
    Kathryn
  • frogmella
    frogmella Member Posts: 1,115
    edited 30. Nov -1, 00:00
    Hi again, Kathryn,

    I had a quick look, I am near Stafford and the only courses I could see that I could get to were on days that I work! I only work 25% but, on a two week timetable I "hit" 5 days out of 10 working half days. I will keep looking, as I agree that it would be useful. You never know though, maybe I will get to go on the pain management programme - a girl at swimming with fibro said it really helped her, mainly the bit with the psychotherapist.

    Thanks again!

    Helen

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