LUPUS UK

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Living with Systemic Lupus

Hi to all 😘

I've had systemic lupus for 10 years and l was diagnosed when my first child was born. I've suffered like so many people that l've read about but l believe that you should take your medication and listen to your doctor... I've been working for 6 years and also bringing up my children, which is not easy at times when l have flares but by keeping active and not moping about with self pity actually makes my lupus feel so much better and now my consultant at hospital has now stated that my blood test is showing as no active lupus and this has been this way for 5 years, since l started working as a support worker with elderly and young people. I gain very little support with my children and my children see me as a strong mother. By pushing myself out of depression as most people with lupus is challenging but life is for all people.. I still take my medication which is hydroxychloroquine, to manage my lupus and by keeping active will help your immune system. I stopped taking my medication for two years and my blood levels still showed as not active. I believe by keeping active, helps Systemic Lupus... Go for it!!!!! Kick Lupus

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I don't really think it's quite as simple as that.

I'm happy to read that you are well and not suffering from active Lupus. Others are not so lucky... Yes being active does help however lots of Lupus suffers are in chronic pain or have restricted mobility or are overwhelmed with chronic fatigue.

Like you, I was diagnosed after the birth of my son in 1990 aged 20. I had renal disease and myelofibrosis. Long term high dose steroid use crumbled my hip so it was replaced. A year later both my knees were replaced. I was 25.... I'm now 46 and still on a lot of medication and the side effects from that are osteoporosis n osteoarthritis as well as chronic fatigue. But generally I am happy and I did have 3 more kids in my 30s, a daughter and twin son's who keep me busy!

I absolutely agree, I have the same position attitude and keep very active, it's a state of mind, if you can overcome this psychologically you can win. Well said Moi1x 😘😘

That's is wonderful.xx

Depends if you're having a flare or not. I have a PT trainer and I'm working so things are good at the moment. Doesn't take away the fact SLE can come along and rock the apple cart so to speak. I was diagnosed 19 years ago and I can absolutely say that I'm in the best place I've been. So it's taken some time.

I keep active and positive. I also work. I was told in January that it might be game over if a new set of infusions didn't work. Fortunately they did so I think I'll keep taking them. I don't think just keeping positive and active will manage to keep SLE and all its associated complications at bay.

A v interesting discussion!

My version of lupus is infant onset but I wasn't told about the diagnosis, so I moved away to the uk at 21 thinking my dodgy health & medical emergencies were "normal".

So the NHS helped me survive lupus without daily systemic treatment for nearly 40 years. Meanwhile I've learned what types of lifestyle management can really help me individually. And a positive attitude has been a v important part of this management, but there have been times when stuff got so hard that I've needed prescription antidepressants & analgesics...and I've spent a lot of time at home unwell etc etc

5+ years ago in my late 50s, a brilliant NHS lupus expert realised lupus was underlying all the stuff the NHS had been diagnosing & treating, and i'd been lifestyle managing. At that point my mother revealed the infancy lupus diagnosis.

I know for sure that meditation & body work + a positive attitude have helped me survive those nearly 40 years of lost lupus diagnosis, but so did emergency NHS care. Now the wonderful positive support of this vvvv special forum + my brilliant NHS rheumy's cocktail of combined therapy daily lupus meds are helping me feel less pain & more resilience + stamina & an even more positive attitude than I've felt since my teens.

My feeling is that:

-We each have our own version of lupus.

-We each discover what can actually help us survive our version of lupus

-no 2 of us are identical, but we can benefit from thoughtfully listening to each other's stories (what our symptomatology is like, how we lifestyle manage our lupus, how we relate to our Drs & our meds etc etc): this gives us a better perspective on our own stuff (symptoms, treatments etc etc) and keeps us informed re options

Even when i discover another lupus patient who seems vvvv similar to me, there always are significant differences in both my version of illness & in how I manage it. This is partly because our individual sets of overlapping secondary conditions make us unique, as does our individual genetic make up & our personal circumstances. So, I expect forum discussions like this one to bring together contrasting views & experiences

😏 As Mark Twain said:

All generalizations are false, including this one.

anyway, that's how I look at this tricky subject

🍀🍀🍀🍀 coco

LOVE this!! HOPE!

moil1x.

Everyone is welcome here

We all have our opinion. You've got yours.

Mine is that your narrow dictate is not the usual tone of supportive, inquisitive, informative voice we share on here. Glad for you that it was so simple in your case

Im pleased you are well

⚽️

I'm glad you have found the answer for you, but it's not the same for everyone!

I'm active, I have 2 children, 2 dogs and 2 ponies, one of which I compete at dressage to a very high level. I also teach and ride for other people. Not sure you could say I'm not active, however my consultants are struggle to get my lupus under control. I'm currently on daily muscle relaxants, Hydroxycholoquine and steroids tablets as the injection didn't work! Oh and pain killers most days.

I may have read your poat in the wrong context but it sounds as if you are telling people it's about state of mind. If it were that easy we'd all go to a shrink and be cured. (If only!)

It is encouraging to read your story. Hope you continue to be active and enjoy your children. Thank you for sharing.

I truly would love to stay active. I've been medically retired at 52. I didn't want to, my GP made me. I have given up a 25 year career because my SLE fatigue is so draining that some days I can't do up shoe laces. I'm happy you're doing ok, wish I could too. As someone else said SLE is too complex to make broad generalisations. May your good spell last a very long time, and may the rest of us continue to cope in the best way that we can.

How do you get medically retired ? And what do you live on , I am 56 and have just been taken off esa and told to claim job seekers and get a job , I have severe lupus with level 3 lupus nephritis, osteoporosis , blood clots , deaf on one side after an acoustic neuroma tumour , lupus arthritis x

I hope you appealed Buffy. See Disability Rights for tips. Very successful tips.

Its a nightmare, I know but fight on!

⚽️

It was the Local Authority Occupational health department and my gp that retired me. I get an occupational pension, topped up with ESA. I had a work capability assessment on Tuesday, so watch this space.

@Moi1x.,

I do believe that most of us with Lupus are strong women ,or men.My own grown children especially think so, like yours do.I have raised my three kids alone with no support ,like you.

However its not always as easy as cracking on and getting on with it for everyone.A year ago I was wheelchair bound with symptoms, I wasn't full of self pity and I fought hard to regain mobility.At the moment I am on a self maintenance plan and have to show a lot of resilience.

Over the years this has been a repeating cycle that I go through.LUPUS , at any time will become unbearable where it once again becomes very disabling and without these pockets of lesser illness to work with life becomes a life half lived by no fault of your own- at times breathing alone is an effort so keeping active as you suggest in this situation is impossible.

Lupus was present in my 20's,which caused me to miscarry six times.I have had this illness for about 30 years and it has reformed my life as I have learned to deal with it.For those in a massive flare your so what encouraging words are quite hurtful ,Each person at any one time will have a set of life challenges to deal with as well as all the whole range of lupus symptoms,. Depression ,caused by the illness added to the mix and you are not able to always ride over the bad patches so easily. I am glad your symptoms are manageable , we all are,however there are people who suffer terribly and at that time nothing said or done will change that time and space no matter how much positive thinking is applied,

WELL SAID Joanne 🌟🌟🌟🌟👏👏👏👏

Barnclown ,thank-you, like minded , awesome women!

🍀😘🍀😘🍀😘

@ Barnclown you managed to put it so much better than I have done, but I had the need to respond as like you my life has been compromised many times over the years, and it was out of my control at that time to do anything except to want to survive.I was looking for your response as I knew it would be thought provoking.

👍👍👍👍😘😘😘😘

My version of lupus--in a history of health problems--is that everything is wrong all the time. I don't feel sorry for myself, this is just how it is. One complication leads to the next, to the one after that...it's exhausting. Full time work just doing basic maintenance on myself. Circumstances are such that I don't have help and it gets old, like me Sometimes it seems pointless...always trying to get above ground without seventeen more dr appts med adjustments or further conflict. I do believe life circumstances affect health, it's only logical. I know I'd feel better if I had more friends or family but I don't.

People don't like to hear this. I am on a pain forum and every time someone gets really down people (well meaning) jump in and Happy Face over it, think positive yadda yadda. One day I said simply that I wish we could allow the topic of despair in the conversation without either whitewashing or making it a disaster. I got such a hostile response from someone I stopped writing there altogether. She started a thread: "Okay, here. Have your conversation. Go ahead" then went on about how hurtful it was to think like that, not to mention inconsiderate and unthinkable to the family...that I don't have. Not every situation is created equal as has been pointed out here. I was angry that no one even tried to support me--all in the name of "positivity". I wasn't promoting despair, just suggesting it be ok to express because it's hard enough in the rest of the world, or among people who can't understand the kind of relentless exhaustion pain or depression that steals days, months and years from my life with Lupus.

Experience has shown me no matter how well intended, this is not something easily accepted or understood. I don't want pity and especially, judgement. Nonetheless I run into it in endless forms, overt covert and everything in between. I'm a small person and have med sensitivities and side effects up the wazoo that Drs are dismissive about or just don't know what to do. And when in doubt...shame the patient.

I believe it is human (pets count!) connection that keeps us going on a very fundamental level . Through a series of unfortunate events and losses I have precious little but appreciate every ounce where I find it. I am a decent person, I can still laugh, I haven't thrown in the towel yet. But after decades of this, a failed marriage, no family to speak of and various and sundry other assorted trauma...I'm not comforted by sunshine blown up my sorry arse. I do not begrudge anyone else their happiness nor do I recommend my attitude. I don't mean to rain on anyone's parade and believe if someone has found more happiness peace satisfaction or acceptance it is a true blessing. I just ask that I be accepted, in all my curmudgeonly splendor, and not have to tie it up in a big pink bow of hope that doesn't feel genuine to me. I wish it did. Maybe one day it will be me talking about the choice to be happy and having a good attitude. But I doubt it will be anytime soon

Best wishes to all of you in this struggle.

GRRRRREAT reply Alice! 👍👍👍👍Am so glad you're here. I am totally relating to all your comments. And I agree: the Human Animal Connection is key to keeping me going...and this is where our wonderful forum is vital to me.

Best wishes to you too 🍀🍀🍀🍀 coco

Yep ! absolutely ditto.

Don't let the scape - goaters get you down.

Sometimes the more ill and vulnerable you are, the more freaked out healthier people become because they cant face their own potential disconcerting futures. Its their weakness, not yours. Your'e the strong and clear headed one.

I've had SLE for 40 plus years and have lost count of how many people, (including some Doctors who where unable to understand what a flare was !!!!) blamed me and my mind state for what was happening to me.

Some choice Quotes: " You must enjoy suffering" "Your immune system is attacking you because you self loathe" "You're afraid of living" From a GP - a real doozy "Your not a real patient"

I have SLE with serious internal organ & renal involvement.

We are discriminated against.

xox

Could not have said it better myself! This all around, times a million. Thank you so much for writing this. This is EXACTLY how I feel.

Thank you so much for your support. I haven't been on in some time due to more chaos (yes more😳) or would have replied sooner. Thank you all so much for understanding, what a relief!

Not that easy with kidney involvement , on top of the medication you take have to take strong immunosuppressant drugs and steroids , side effects terrible , now have osteoporosis from taking steroids for 14years , there are different levels of SLE

Not when you have level 3 lupus nephritis and have to take immunosuppressant drugs and steroids , you are lucky you only need the drug you are on

Yep.......Class 3 & 5 here.

You know, I wrestled with myself not to reply to this poor person, but couldnt resist and tried to show our usual compassion on here but still make a point. There are always people on every forum ( thankfully very few on here) who are lonely or narrow minded or attention seeking yet this is a perfect example of it backfiring spectacularly.

Its nice if you have mild anything, but you still have something.

Talk about a rallying cry! No one said it better than Alice. All the years, all the isolation, all the not being heard, all the physical stuff to bear, all the being worn down by ignorance, lay and professional, but there stands Alice, defiant, indignant, loudly proclaiming that we will not go away quietly, we will keep fightling, no matter how weary we become, sick we become - down to merely wishing to survive the day - our human spirit and dignity will not be extinguished, whatever do gooders or smily faces say or do.

This forum is a beacon for true understanding. No lectures, no dismissive posts, well may be one now and then! and true solidarity.

WE KNOW. WE DONT BELITTLE, WE SUPPORT FROM THE HEART. Almost EVERY POST BRINGS SUCH LOVE BECAUSE WE HAVE ALL BEEN AT EVERY STAGE, EVERY DEFEAT, THE FEW VICTORIES, THE EXHAUSTION OF TRYING TO GET HELP.

THANKS original poster, how well you have been answered by honest, struggling people, who have the grace and dignity not to judge.

EVERY DAY WE ALL DO WHAT WE CAN TO SURVIVE AND COPE WITH THIS AWFUL DISEASE.

And Alice. You are not alone. Ever. You are our standard bearer and inspiration. And that is not blowing smoke up your, or anyone elses wazoo. Your resilience is the standard I aspire to, but often fail miserably to achieve. If it were not for this site I would more than struggle every day.

I hope this does not sound false and do gooder or patronising. I mean every word from the heart.

What a spectacular back fire that sermon was!

I'm so proud of all of us, every day.

Sincerely, much love

⚽️

Alice you can pm me anytime for a chat if you would like to. You are not alone, truly

Footygirl, I just saw this and so needed to tonight! Bless you and thank you, I've got to change my settings!

And thank you, you can pm me too!

Lupus is such a weird condition. It comes and goes and after thirty years of living with it I don't really understand what triggers it and what doesn't. Only that sun, hormones, infections and (I think) stress all play a part. I had it in my twenties and did loads but also had to give up some things too (a job, full time hours and so forth). It got better on the whole in my thirties and forties and now is playing up again in my fifties. Right now I have been in the same full-time job for 17 years but that is because I am lucky in that it isn't nine to five. If it was rigid (as it is for a lot of people) I wouldn't be working in it right now because although for loads of the time I work more than 40 hour weeks, for the last six months I wouldn't have been able to cope with standard hours. One thing I am completely certain off is that I am very lucky to have horses, dogs, cats and a wonderfully supportive partner and (perhaps because of all of these) I have never suffered from depression. If there is one thing I will never believe it is that Lupus is caused by its psychological dysfunction. No way Jose!! Of course being constantly ill gets people down...we are all human....but that is NORMAL. So you can be as positive as you like (and who wouldn't like) but that's never going to stop a flare. We needs medication, we need support, and like the general population some of us might need mental healthcare too (there's no shame in that) but what I don't think any of us need is to be made to feel that our cure is in our own hands if only we would toughen up a bit and be more positive. If the person who started this thread is in prolonged remission then that is great and something many of us can hope to look forward to at some time in the future (let's hope) but sure as eggs is eggs I don't think we can 'will' ourselves into it however happy/determined/tenacious/stoic and/or anything else we might be.

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