Being my usual self, I've never been one to sit back and watch other people work. I like to get stuck in, and help out. And although I got a lot tired-er a lot quicker than everyone else, I never thought anything of it. Then I got my diagnosis, knew why I was so tired and sore, and even then there was no way was I going to let that stop me.
However, for the past 2 months, I've been signed off from work after a severe flare up, meds not working, and constant pain in my hip which is literally crippling me and it's difficult to walk. Any normal person would rest and try and get better right? Me, no.
I know its stupid, and I'm doing myself more damage than good, but I can't sit back and watch everyone else work, no matter how much my mum and boyfriend nag me. I like to help! Until my boyfriend & mum physically sits me down and practically trap me there, and as soon as I move, I get shouted out. In all fairness, they are looking out for my best interests, and for that I thank them. And I know I need to rest more, but I honestly can't do it!
I think my new motto for this week is to sit back and relax. I need to, because I am in agony everyday, and no amount of steroids or painkillers is helping, and hey, hopefully the sun will come out and I can lounge in the garden. In a hoodie and trackies so I don't get the most unsightly rash ever all over my body which has become a permanent fixture on my face! Oh the joys of being a lupie.
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E-Say
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oh dear............you sound a lot like me in the respect that I cannot just sit and watch others do work or cook or clean without getting up and helping. HOWEVER today that choice has been taken away from me and because I have pushed myself to my limits, I am unable to move today without feeling as if I have been shot in the back!!!!
You are right though, if you push through your pain and continue to do stuff then you will end up like me and not be able to do diddly squat. I sure as hell dont wish that on you or anyone else.
Take notice of your Mum and your boyfriend and just relax and let your body heal. You never know you may just enjoy it lol
i am glad to hear there are other Loopys out there just like me!
I have had a TIA (mini stroke) recently.Like you I have everyone on my back telling me to slow down etc.
I went back to work in a Primary school today after 5/6 weeks.I only did my first morning today and didn't do much.However I came home went to bed from 2 till 5!
Everyone says I have gone back too soon ,but my GP said it was ok to return to work without seeing me!
Oh well step by step.Listen to you body!that is what my Mum says,.She is always right-very annoying as it is!
Take care of yourself and learn to enjoy resting.I make cards and scrapbook.It is very rewarding and therapeutic!
Hi everyone, I think it is so easy to push ourselves, particularly when we have a good day and then we often pay for it the next day. Today I planned to go food shopping (haven't done a lot of this as I usually order on line but methotrexate had been helping loads and I thought I had a lot more energy). After a trolley full of food shopping I planned to go straight to the swimming pool. However, after my shop I knew that I was pushing it and ended up coming home and putting the shopping away and having a cuppa and chose to leave the swim until tomorrow. It's the first time I have ever paced myself with this condition as on a good day I try to do what I can .......so today I actually felt I was listening to my body. I guess it's not something any ordinary person would boast about but it's an achievement in itself so say that I may just be getting there with learning how to store my energy levels. It may just be a one off but I'm going to keep on practising until I fuly learn my new limits x
I know how you feel I do it all the time. I can't ace myself if I'm feeling tired theres no way I can stop take a rest and get going again. I gennerally stop when I fall down then I will sleep more or less where I land.
I am the same I cannot sit and watch other people do things. I even cared for my wonderful husband for 24/7 on my own for about 4 years and would still do it now if I could have him back again.
Sorry to hear how much pain you are in. I'm terrible at pacing & resting too, but have found that pottering about & doing little jobs around the house, allows me to feel like I am not completely useless any more.
Try to be a patient patient! Your meds will take time to work. But hopefully when they do, you will be able to do a bit more. But always try to rest before you exhaust yourself, otherwise your body is in a downward spiral, & never gets chance to fully recovery from each over exertion.
Take care of yourself. X
Hi everyone. I know I wouldn't wish my condition on my worst enemy but it is sooooo reassuring to know that there are so any of us who are just like this. I spent an hour planting potatoes on our allotment on Saturday and it has done for me for the week. The problem is that we can't just sit in a chair all day with daytime tv. We need to be up and doing! Good luck to us all.
I am exactly the same I can't rely on my mam and boyfriend as I feel they have enough with just worring about me never mind doing everything but as u say they always insist and my mam has me on bed rest for the week and I'm sick of gettin told off for moving lol she doesn't realise I have my own house to clean I can't just sit in hers and drink tea hope u feel better soon my meds arnt workin ATM so I feel for u fingers crossed it wil get better soon and u recieve a few extra spoons
Dear e-say I think that from posts I've read all lupies suffer the same problem They are get up and goers Not lazy individuals .they are wanting to organise and do things themselves I have had lupus all my life owned and ran my own hairdressing salon but lived off painkillers cortisone injections gold injections I'm sure I just put my body into overdrive Back then diagnosis for lupus was not quite as good as it is today so I got treated for all sorts What I would like to say is try and prioritise what you really want to do and feel really good about achieving Then learn to rest If you know you are going somewhere or are going to use lots of energy then rest before hand and make sure you give yourself the next few days off to recover Look at it like a journey that needs planning .Please don't burn yourself out Flare ups are not worth it we all know that I read a lot now also go to a Pilates class for people with health problems run by our local council. I'm 63 now and only just learned to pace myself don't know if I would have achieved any more if I'd accepted pacing sooner maybe wouldn't have been in so much pain or so exhausted all the time Maybe you could ask to go on a pain and pacing course and see what you think I have rambled on so will close now and you take care and do try to let others share the load
Thanks for the replies everyone! I would love to reply to everyone individually, but I'll end up saying the same thing! I'm so glad it's not just me that tries to do to much, and in a way, I still feel quite naive about how much I can and can't do because I'm still early in my diagnosis. I'm hoping my meds will work soon. Today is a methotrexate day so I'm feeling totally rotten right now, hope it's all worth it in the end. I am going to try and take it easy, at least it's nice weather and I can sit in the garden. And when I get my new flowers at least I can sit down and plant them so I'm not hurting my hip quite as much.
Glad to know it's not just me! Hope everyone is feeling okay. Thanks for the advice!
I agree with voutton - It is interesting to me that so many of us seem to have similar personality traits, in that, it sounds as though we all lived full on lives before illness/diagnosis - and also are not lazy or inclined to rely on others for help. I've had counselling recently where the focus was for me to accept my limitations and to pace myself, this sounds as easy as we all know but in practice is much more difficult.
Basically it seems like we all overdone things before we became ill and I would be interested to know if any research has been undertaken into personality types and ill health/SLE.
E-say, wishing you all the best and really hope you and everyone on here is able to learn to pace themselves, even if its a slower pace than we'd like.
Hi I too have always pushed myself to the limit, had my own cleaning business for years-and just thank God I gave that up before I got really ill, as I just would not have survived.....Now only work part-time (very hard money wise!!!) But I do look after my little Grandson for 2 days a week, this week I had him Monday and yesterday-the result today I have only just go up at almost 2.30pm!!!!!
I have loads of housework to do...but am going to take it really easy, and as one of you said -prioritise.... My boyfriend feels it is too much having my Grandson-but he is such a little darling and the light of my life, and it is quite funny really as he sometimes says he 'can't' do something-to which I reply 'of course you can-you can do anything if you try hard enough' (just as my Mum used to say to me and I also used to say to my own kids) but sometimes NOW when I say it to myself, I do accept that actually I CAN'T DO IT!!! At least not today, and there is another day tomorrow!! Take care all you luppies-it is good to know that we are not alone!xx
I haven't been diagnosed yet, I've been blaming it on CKD and having pluerisy 5 years ago. Looking back I don't think I've done myself any favours by pushing myself too much. I think I have it now, after speaking to the nurse at my GP, I did a lot of reading and all the peices of the jig saw seemed to fall into place. Chronic tiredness, pains in my joints, dry mouth, sweating at night, pink flush on my cheeks and nose from being in the sun( never had this before as have an olive skin tone), chronic kidney disease, depression, my liver was effected but now ok and my concentration and memory are dreadful. Having been an active, intelligent person, who enjoyed having a clean house; I feel like a babbling idiot, who is lazy and not bothered about housekeeping. Thank god for my husband. I pray that the rheumatologist gets to the bottom of this.
Come on emma you know the talks we had at least you seem to have come to your senses though, try not to sit in the sun too long, i get a rash no matter how much i cover up i think i need a balaclava to put on my face and just have me eyes out that should help llllloooooooolllll
talk to you soon i have been so busy when i get the time i will email you though
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