Can we have a life?

Hi everyone my problem is that when I feel ok I over do it, I think we are all guilty of this. But how do we know how far too push ourselves?

I ache all over from dancing at a party, this condition is so cruel, I'm 46 and don't want to give up on life, I think sometimes I do it to rebel! But it just creeps back up on me a couple of days later and I then think I shouldn't have done that. Is it just me or can anyone relate to this?


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  • I swear I do get like that too I think that I can overcome it and just rebel like you said and think I can conquer the illness I'm like ahhh if I sit it the son I'm untouchable what a bloody raving lunatic I am big mistake end up severely fatigued and with a big headache I don't have to do anything sometimes but the illness still manages to creep up on me I'm 19 and hardly can tell when enough is enough I guess I just create a plan where my body gives up on me and follow that next time I try to rebel

    Oh god what lunatic advice I have given lol

    Love Afia xx

  • Hi lucylocket, I do it all the time, but if I listened to my body, I would never get up in the morning !!! We are all different, and my dancing days are long gone, but I still manage to overdo things everyday. I have been in a lot of pain since Friday, but still trying to keep going. Yesterday, I was in bed almost all day,(it got me in the end). Today I have stayed up all day, despite better advice, and now I am on here talking to you at this time of night !!! I do pay for my stubbornness, and most of the time I think it is worth it to me. If I ate the right foods, took my rest, and never did

    anything unadvisable, I would be stuck in here, keeping well as I can, but no other bugger to share it with.!!! I live for today, as tomorrow may never come. Foolish words, some may think, but that's how I am. PS anyway, if I didn't overdo it, the house would be a tip, and we'd all starve..haha

  • Ahh thanks you both making me feel bit more "normal" and it's good to know I'm not the only one! I guess we should keep trying to do what we can and learn to accept our limits, not easy tho is it? Hoping we all feel better tomorrow :)

  • Hi Lucylockett

    I can totally relate to that. I am a little older than you but a rock/blues/heavy metal fan nonetheless. I have learnt that going to gigs and bopping around is going to make me ill for a few days afterwards. Like you, I have no intention of giving up or giving in, I just go and do these things with the knowledge they are going to make me ill, but it is well worth it. Why should we have to give up the things that we love, we have to accept that some sacrifices are worth making!!

  • Ugg! I am having a very hard time with this right now as well. I'm 29 and have recently been diagnosed after not being other peoples normal for years. Well now I know why I feel the way I do, anyways this year my disease has significantly progressed. I just can't seem to get used to the idea of not doing everything like I used to. I feel like some days all I can do is get up, get ready for the day, and by the time I have the dishes done I'm completely wiped out. I'm also learning that after my measly 3 day work week now that it takes me at least 2 days to recover. And yes if I go to any event or out of town, then I know I will be paying for it for awhile. It's very hard to grasp the fact that this if life now. I also will tell myself oh I'm fine, I'm just going to choose to feel good. Then I do something really stupid and am quickly reminded that I'm no longer fine. So I feel your pain, and it is really helpful for me to know that others have the same feelings I do over this. Hope you start feeling better soon.

  • Hi lucylocket! I agree totally with 6161 - if my body had anything to do with it, I'd never get up in the morning! I'm also an older Lupie but have always made the effort never to throw in the towel since diagnosis in my early 20's - sometimes I'm really pleased I've made the effort, other times I have put my health at risk. Going out in the sun without protection, not taking all my meds, going out partying with friends when I should be at home are just some of the things I've done. Not taking some of my meds has cost me, even though I only did this for a very short time. I tried to self-medicate thinking I knew better than the doctors. However I still enjoy partying, dancing and having a great time, I do feel awful for a couple of days afterwards, but absolutely love it!

  • I was managing ok like you over doing it and spending a couple of days in bed to recover for a few years. I'm older my kids are in their 30s I don't work and was doing ok. Then long story but I'll make it short my daughter and her new baby came to live with hubby and me last January. Since then I've had to change the way I was doing things no more days in bed to recover from over doing it the result has been awful for me. I'm now just finished my 3 course of steroids I've also had steroid injections in my ankles, elbows and feet. My meds plaquenil, imuran and neurontin have become useless and I'm depending on steroids to keep me going. So take a fools advice slow down and listen to your body.

  • Just thought let you know our daughter hubby and 2grandaughters had no choice to came to live with us last June, they could not get any jobs on the south coast, but fell into jobs very easily living commuting from essex, but could not afford the high property market, I went so down hill,and exhausted nearly break down, we took advise from my Dr went home and said that no way could we function ,with my illness,it gave them a shock and caused upset,but I went back to getting up when I wanted and back to bed when I needed, they went off and got childminding, so I didn't take or pick up from school,They realised then how bad things had got we survived got through our differences, and they moved out last week,after10 months,and such a joy we are all happy.

    Please just be open and sit down talk tell your family,don't wait till things get so bad you fall out,and it effects your health ,My Dr advised extra meds won't sort problems,talk through with family , however hard it is. My thoughts are with you, and hope things work out well,your health comes first, and shouldn't have to rely on extra meds,you want to enjoy them while they are living with you,

  • I can relate to you totally aswell, I was at a theme park with kids over weekend I cant even sit o a ride with in case my bones hurt..crap isn't it im the big 40 this year and restricted to what I can do..i over do ir all the time, i find it really hard to pace myself. I try really hard to rest..bear it in my mind. We can have normall lifes just got to slow down a little..tak care

  • I can relate but tehre are ways to adapt. I'm relatively lucky in that I was diagnosed at 18 and with a prior history of autoimmune conditions I have had 10 years to get good at reading myself and strategising ways I can still get the most out of my life. My first rule of thumb is listen to your body. If you feel achey on the morning you have plans, see if you can arrange alternate plans or just take it as easy as you can beforehand so you can enjoy yourself. My second rule is don;t give it up, change it. If you have something you love to do (like dancing) find an alternative. Maybe jumping around isn't for you (for me it was pole dancing) but maybe switch to ballroom. I did and I love it, it's still great exercise but much more low impact. Swim or cycle instead of running, host movie nights instead of going out, bring friends to you so you don;t have to go out all the time. My final rule is if you have to cancel, do. You have Lupus, it can't be ignored (as much as we'd like to). These may seem trivial but they have worked for me. Also, if you are having a hard time explaining why you have to cancel things, sometimes last minute, the Spoons Theory is a brilliant way to do it

  • I do the same, run around like a lunatic and spend 2/3days after in bed, the pain clinic referred me to a pain management program which i have started and gives a lot of ideas on coping with pain and slowing down, its worth a try

  • Hi Lucy, Boy can I relate to this text this morning. Following a recent steroid injection things have been more manageable (stiff stiffy and achy but not as in pain). So at my daughters friend evening do on Saturday night the band were great. I had a few proseccos and enjoyed dancing with my husband. I knew the next day I would feel a bit sore but to me it was worth so much that night as it made me feel I had a little bit of me back again. I had all the girls (both my daughters were bridesmaids) friends coming up to talk to us and it felt good to be 'out there' again. Fast forward to the next day and I needed to use my heat pads on neck, shoulders and thigh. Fast forward to yesterday and probably still full of it ....I thought let's go for a walk here at a local area of scenic again did this...limped a little on the way back. But again....I thought I've cracked it.....the meds are totally working.....when can I go back to work (all the usual thought processes we have)......anyway this morning my body is going to take some loosening off......neck, shoulders stiff and achy and in my stomach, temp bit raised (I can tell now) and also bit sore in stomach.'s that lovely reminder that we have telling us to take it steady or we will indeed flare up. So guilty as charged Lucy for trying to do too much.....but had a few days of feeling it was so worth it for the memories to cherish. Guess it's all a balance!

  • At 48, I have been living with feeling like this for 28 years. I am either stupid, enough, stubborn enough, or optimistic enough to just not let it stop me (well most of the time anyway).I am still young enough to want to, yet not old (or wise) enough to realise that I can't. So I just bat-on, headlong into things without a second of consideration that it may prove too much. I have just about become wise enough to be able to realise that I may have set myself too high a target, when this is the case I just adjust my aim.

    I only have one rule and that is.........................I refuse to fail or even recognise failure in anything that I do (try do do) The only thing that I have come to accept is that if I push myself then it is going to hurt.

    But still I push.

    I don't (yet) understand this illness, even less (I am a an) do I understand me, so I have little or now chance of understanding how the two work with (against) each other so I just plod on.

  • I guess I too can echo most of this. On days I feel well, I get on with it, and when I cant I resent it for stopping me what I want to do. I try and resist wherever possible to stop, but it does catch up eventually! I remain in a busy life - working 3 1/2 days a week and 3 kids, and a few other bits. But, over the last year I have learnt to say 'no' to when things are asked of me, wheras previously I was always a 'yes' person, most often to my detriment! I am learning - slowly!! Guess it has to be a balance on your own commitments, others understanding (or lack of!) - amongst many other things!!

  • Hi

    I totally relate to what you are saying. When I feel 'good' I think I will do stuff the way I used to. Some days my body says no and I realise I wasn't as good as I thought. On the days it doesn't make too much of a fuss I often do things for too long.

    We recently went to Glasgow inside snow slope. I was determined to have a go even though I struggled through the first few attempts. Then, once I relaxed it was quite easy and didn't take much out of me. Knowing this I just carried on pushed past safe limits until I had to stop.

    I'm wounding if this was the cause of his episode of fatigue and fog - days later?

    We all do it once in a while. I'm gardening today but pacing myself. I can't be off sick again

    Take care x

  • Managed a mere 2 hours on and off weeding and a trip to buy a wheelbarrow and that was it. So much for a good day as I've lay on my bed since couldn't keep my eyes open

  • I certainly don't think you are alone in wanting to rebel when you're feeling good. I know I do it and often even when not feeling great push myself far more than I ought to. But I want to do things with my teenage daughter (she's animal mad so we do lots of animal places which involves lots f walking) and then suffer afterwards. So yes you are perfectly normal :-)

  • Just posted on blog, but thought it would cheer all of you up on here too...............


    Last year I couldn't grow a tomato from seed for love nor money, to the point that I had to rely on my mate Paul and his healthy stock of seedlings to enable me to get any home grown. The sane could be said of any flower seed that I attempted!!

    I have just come from my temporary plastic greenhouse and blow me, it looks like this year I will have gazillions!! Which in a way is a bit of annoyance as now there is only me in the house that likes toms. Oh well it seems that later this year I will be producing tomato based sauces on an industrial scale! As for flowers.......well it seems that if I sow it, it will grow, so at least the new garden will look pretty this year.

    Two morals to be had here;

    1. Anything.....................hell everything is worth another go

    2. Be very careful what you wish for..........

    Tomato sauce anyone?

  • Adrian....good blog and story. Incidentally though worth looking at how some foods cause cause inflammation. Tomatoes being one of moderation probably fine though. Being married to a half greek guy who likes to use tomato based I have had to try and change this. ....Just a thought you should know about nightshade veg and inflammation.

  • Bugger............................not like me to belt down the wrong path. Thanks for that, an interesting thought and one that will not remain un-investigated.

  • Funny as last year for my husbands b/day, desperate for something to buy, I got him a mini greenhouse and tomato plants. He is a builder by trade and not a gardener type. This year he has spent 2 months clearing land at the end of garden, and has now made 2 enormous raised beds. They look the business but as yet, are not seeing any action !!! Not the reaction I expected. Lol....

  • I can relate to this too although I have a diagnosis of RA rather than Lupus, but my autoimmune spread is quite broad at present.

    I try to go to Zumba once a week but have failed to make it lately as my ankles and fatigue have prevented this. I exercise on my Nintendo Wii daily doing yoga and muscle exercises for 30 minutes, sing in two choirs, walk my two dogs and hold down some quite full on volunteering work as well as being self - employed.

    The price for all this comes high but only my husband and sons really see it - although when things are bad I walk with a marked hobble usually.

    The fatigue is overwhming at times and I know I should do less but I just carry on and collapse once home. I'm useless around the house but my husband is brilliant fortunately and he only works part time. My three sons do complain that I'm always sleeping these days but I know they are also very proud of what I achieve and that's important too.

    The worst thing for me was when my rheumy wrote in his last letter to my GP that although I claim to be fatigued he sees me doing a lot (we overlap a bit with my volunteering). He implied that either I'm doing too much and should get real or else I'm exaggerating the fatigue. Also others with RA have implied in the past that if I do this much I can't really have RA.

    This is nonsense because I prepare myself in advance if I'm singing or travelling for work and try to rest as a priority before and after meeting a deadline. It does involve some internal panic that I just won't be able to stand for pain or hold things because of wrist problems but I'm not going to let this disease defeat me. I tell the people who need to know if my condition is going to affect them so I don't feel I'm letting people down so they can prepare.

    It is all about learning to pace things differently and I guess this is something we only learn through experience really. I'm 51 and have only had this autoimmune stuff for three years but have always had poor health in other ways since childhood. I'm still a novice at pacing though!

  • Hi Twitchytoes....can totally empathise. I feel at the moment as though I am in limbo land. Just out of a bad flare up two weeks ago but new meds may be kicking in or it may be I will head for a fall again. I have days at the mo when I think could I return to work two days/three days a week but it has only been a few weeks of feeling ok so know I need longer to determine this. But like you why should we feel guilty if we push ourselves on the days we can. That does not mean that the condition is not there or we are living within its constraints. How do we know what we can do until we do push. I danced away on Saturday night and on Monday had a walk......both times I had heat pads on and off various joints afterwards. So people do not see what goes on behind closed doors. It's such a shame that we feel guilty when it's a hard enough condition to live with as it is. So your own instinct in what I think x

  • Before my recent stroke on 3/1, I was a gym member doing zumba, latin dance, etc. and exercising at home, taking care of grandkids occasionally and now post stroke with APS, I'm realizing I have to "bank" my energy as I call it. I know that if I overdo it, it's going to take a day or more to recoup some energy. The key is awareness on my part. I have to know that if I am doing more than usual, I'm going to have to catch up on rest. Don't give up hope. You can still enjoy life but rest a lot in between. For me, it's growing acceptance of what APS is and realizing I can live with it and still enjoy life.

    Keep your spirits up.

  • I've been overdoing things occasionally and having at least a smidgen of a life for 30 years Lucy and was still here last time I checked ; ) Admittedly nowhere near as action-packed as I would like and there's always a huge price to pay but it's of the utmost importance, psychologically, to continue to have enjoyable things to look forward to, including parties. Just be aware you'll inevitably need a couple or perhaps several days to recover and plan ahead accordingly. I definitely do not, however, advocate pushing things during flares. Keep a close eye on your temperature for a tell-tale, low-grade fever and strictly limit any strenuous physical activity while running one. Early on, I once stubbornly insisted on scrubbing out the oven during a flare and ended up in hospital for a fortnight! Despite my warning, being human, individual and relatively-intelligent beings, often means learning our own limitations and lessons by personal experience and that does take a few years. Hope this helps, hugs x

  • Tigerlily4 I have ordered a thermometer! lol what reading are the warning signs pls? And thanks to everyone for all your replies its made me feel not so alone :) xx

  • Lol! First establish what your normal temperature is when you're feeling well Lucy - mine is on the low side at 36.35C - but generally around 37C for adults. If you start feeling off-colour and it rises c. 1.5C above your norm you should take paracetamol or whatever you can tolerate to bring it down. Also take care not to over-do things at those times, especially not to overheat yourself in any way (sun bathing, gym, steam rooms/saunas, heavy domestic chores, dancing, lol, etc) as this might easily trigger a flare. Persistent low grade fevers are one of the hidden dangers of lupus and put a strain on the heart, which of course can lead to more serious problems in time. That said, just something to bear in mind. Stay well and enjoy yourself ; ) x

  • Hello. I can relate to this too. I was diagnosed in November, aged 39, so the big 40 this year. I have three young children, aged 6,8 and 10 and I also work three days a week as a Teaching Assistant at a local junior school. Some days I feel OK, although never symptom free and I do as much as I can and other days I struggle. I am slowly learning to accept this and learning that I must say no to things. I cannot book a weekend of activities with friends and/or the kids, I can do something one day, then one day to rest. It is really hard though. When I have a good day at work, I think yes, I can do this and other days I think, I would live to give up work. But the job is as good as I am going to get, school hours, school holidays off with mine and it's fun. Could I cope being at home full time? I don't want to give up on my life so quickly. So I will continue to push myself to keep going. I guess I have to be grateful and think to myself all the time, it could be worse.

  • Totally. I went to a car show this weekend did a lot of walking Saturday over 10,000 steps just walking and looking at cars. It's taken a few days to feel better. Resting as I reply.

  • I can definitely relate to what your saying. Hi my name is Joanne I'm 40 years old and have been suffering from chronic pain for years, I've had to give up so much in my life due to the pain. I do over do things when im not feeling to bad and oh boy do I suffer afterwards, I do try to pace myself a little more than I used to, I did a pain management course for 10 weeks I found that has helped me tremendously give that a go your G P has to refer u to them, what have u goto lose if it helps at all I've seen me in the past doing something like cleaning, or walking, and crying my eyes out in pain but would not give into it, know things are a little different I don't let it get that bad if I'm struggling with anything I ask for some help or space things out, of course I still get days that I'm in so much pain and aching from the waist down that I don't now what to do with myself take each day as it comes,and go from there. I'd love to keep writing back and forth with u as it sounds like your having the same difficulties as me.

  • If you can do things then do it why you can. I have came to the place where I hurt so bad that I can't do anything at all anymore. I can't sit long, standing is out of the question so all I do is lie and that gets to me. Take it easy and don't go full force in doing things but have fun at whatever you can do. Even if you can't dance long, go out with a friend and have fun. Know your limits and don't over do it. You know how far you can go when you wake up the next day and say "Why did I do all of that" ? You don't have to do it all in one night. Remember this that we don't like what we have but we do have to acknowledge that we do have Lupus or whatever. Life don't stop there. Do what you can while you can but if you wear yourself out to early then you won't be able to go much longer.

  • Oh I can so relate to this. Last new year I danced and enjoyed my self. Only thing was I was then so I'll for the next 3 months. This disease is horrible it takes away so much of our lives

    I do try to do as much as I can. Today I have been asleep for most of the day, I just can't keep my eyes open

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