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Am l in denial as when l am on a good few days, l think every time. l have got it under control and l am so sure this time l am doing everything right. Then it kicks back in the feeling of being so ill, so exhausted and question myself each time where l must have gone wrong. When will my mind except that this is the way things are now, and stop thinking l have cured myself every time l feel well, If only l could except my condition sle, l would not get so depressed when l get so poorly. Sorry l needed to have a moan just been through the most awful 2 weeks of the most horrid flare up, just had to let off steam. Thanks for listening.Hope everyonel is doing well.

11 Replies

Hi, am sorry that you have been feeling so poorly and hope that things improve soon. I can understand just what you mean about thinking that it is somehow cured everytime you have a good spell, and the crash when things are worse again. I think it is really tricky to come to terms of the variable nature of it and to accept the ups and downs of it, so I don't have any great advice as to how to do it, just know that you are not alone in finding it hard to accept. Best wishes for better days ahead. x


I know exactly how you feel. I was just the same in the early days of having the illness and could not really believe that I would not get better, that it would not be for ever. But it has been going on for 18 years and now I truly accept that I will probably have to go on adjusting and coping for ever.

BUT there are people who go into remission for years. Will one of us be like that? the trouble is we won't know!

I am so sorry that you are feeling so ill at the moment. The only way I can cope if I feel bad is to think that some people have to put up with worse things. Also I know that the pain won't last but will improve if I rest.

Wishing you some respite from the wretched symptoms and some good days very soon.



I think we are all the same, I know that when I am feeling pretty good, I think I can do anything, I then tend to overdo it and suffer for days, sometimes weeks afterwards. Unfortunately, I do not learn from this and the next time I am feeling good, I do exactly the same thing over again and again, suffer for it. Oh well, perhaps I will learn one day, although I very much doubt it!

I think we are all chasing the dream that we will go into remission for years, hopefully it will happen to a few of us!

Sue x


Hi ... First a gentle hug of support (((lucy-may))) ... Lupus is so frustrating and yes very 'unfair' and more so, harder to learn to live with. Please don't beat yourself up! Love yourself and your blip called Lupus.

I have been living with it for 40 years. I am blessed as I seem to be (ooo dare I say it ;) ) in a remission of sorts - I am still on meds - but I am the most active I have ever been! I am thankful for this every moment. I am now a fitness instructor. How long it will last - I do not know. But I am seizing the moment and being aware of the slightest change to my body. Don't read this wrong .... I don't do this activity full time - can't. When I am off I spend alot of my time resting and looking after myself.

I have been at the bottom of down more than I care to think about.

Hope you are bright again soon.....

Fruitloop x x


Hi sorry you are not feeling good. What you are saying sounds so familiar to me. Every time I start to feel good I think "yey, this is it I'm well" and so I throw myself into everything and go over the top and overdo it, then come down to earth with a bump. However, it doesn't do any harm to be optimistic. I am just coming out of a horrendous week and am now trying to catch up.

Take care, Jax


Thank you all for your thoughts, l truly thought l was so stupid, but now can understand that if others think the same as me, l cant be that daft. when l get down again l shall remember what you have all wriitten. Thank you again you have all help me in my thinking. What would we do without this site, I feel blessed l have so many friends. Love to you all x x x


You are as "normal" as the rest of us :D

It took me at least three years to figure out quite what I was doing and I still have the odd time where I stupidly think there's nothing wrong with me or something as simple as biting off more than I can chew...

I wrote a blog entry about 18 months ago that you might like to read...


Hello Lucy-May. Please don't think you are alone in feeling the way you do. As so many others have already said it is a natural reaction to what we have to put up with. It might be worth chatting to your doc about some anti-depressant meds. I've been taking them for years and although there is still an unfortunate stigma attached to them I have found them helpful. The most long term benefit I have found though came from starting to meditate. My GP suggested it and I have been following the practice daily for the past two years. It has made a tremendous difference to how I think about my pain. As my doc said "The pain is inevitable. Suffering is optional". It doesn't stop the really bad days happening but it does help keep them in perspective.

I do hope you start to pick up again soon.



Hello There

I think that a lot of us can identify with the sit down feel well, do something feel like crap, so you sit down and feel well again, convince yourself to have another go.... feel like crap again... etc etc.

You will have to redefine yourself as less able. Not as easy as it sounds, you have to give yourself permission to be ill.

Good Luck.


Hi Thanks everyone for all the advice, and thanks Lupoid l did read your blog you wrote 18mths ago. I do except all you have said, but feel its going to be a while before l fully except, if ever this horrid illness. But reading everything you have all said has certainly helped get the message over. so thank you all again. Keep well x x


Hey Lucy-May, like everyone has said before we know exactly what you mean. it's so confusing as when you have an up couple of days you feel on top of the world and full of positive energy and then the next thing the world is crashing around you and you feel so alone and down. Last year when i had finally got it under control as far as i could tell, i thought 'i've been feeling great! maybe i'm cured and don't need my meds any more' so i then gradually or rather 'conveniently' forgot to take my meds, skipping days at a time until one day i just stopped altogether and stopped going to my hospital appointments... strangely everything seemed to fine and i got away with it for over a year! i truly believed i was better again and that it was just some sort of phase my body went through but now i'm ok. how wrong was i... the pain eventually came back with a vengeance and i had to admit defeat and get back in touch with my doctors, who also thought it was strange how i hadn't had any symptoms for all that time. I have kidney involvement 'Nephrotic syndrome' and have had two biopsys so far, one before i stopped my meds and one after the last flare which put me back on them... whatever you do, please do not do as i did as it was ten steps forward and twenty back lol x x x


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