I'm not trying to accuse anybody of "moaning". As I'm sure you are all aware lupus sufferers are made to feel they are always whinging and problems are passed back and forth and can take an incredible amount of time to be brought under control.
However, as a young man with Lupus (which is even more isolating) I feel the only message we give to newly diagnosed patients is that of doom and gloom. Does any body have anything positive to say? I.e..problems they've had that are under control? or how they manage their condition well on a day to day basis? I think this would be a great help to lupus sufferers so they don't all think there is no life after sunlight, or are going to die of renal failure!...anybody?
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Lewy
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I was diagnosed in September with sle and kidney nephritis but was diagnosed quickly and put on medication which is working well mostly. Signs are its going into remission and doc says that although meds are obviously a huge part of this , so is my positive attitude. I was upset when first diagnosed but after a couple of weeks, decided that lupus was not going to control my life and I was going to live my life as normally as possible. Yes, I'm always exhausted but I go to my bed early. Yes, my joints are sore but I try not to let it affect things too much. I try and watch what I eat, go for a wee walk every day, and generally do what I want. My theory is you have to laugh your way through this as much as you can or it will eat away at you and life will be crap. I've joined a group o. Facebook called lupus is real and I get a great support and lots of laughs with the members on it. Hope this helps a wee bit.
You have Lupus,,Lupus does not have you !!I love that saying,I was diagnosed last year in August and i too found alot of people who thought the same way as you described!We still have lives to live and have to grab whatever we can still.I know i refuse to give in a be a victim.Hey i even created a group on facebook..Lupus is real! Join us,,we are just ordinary Lupies who support eachother.Although i have to say i love this place too.
Thank you Sharon, Thank you Dawn.....this is just the kind of attitude I like to hear. If you are anything like me, you face a problem every week and every time you burp you think some sort of bizarre flare is occuring but...we go to work and enjoy our lives...I really want to get this message accross to any newly diagnosed patients. I feel sometimes whenever people conduct their own research they might be terrified into a darkened room!!!...yes I'll join your group. Thanks ladies!
What a great respose!! y ou do have Lupus but don't ever let it have you
Hey i am not english and diagnosed about 5 years ago!! and try stay calm and get job wish is i enjoy!!! my son make me coffee when i am tired hes only 9 years old and its hard to explain just be appreciated and deal with it thats wot i have learnt !! hope you better soon x
I'm not English as well and I quite agree with you that keeping busy and positive will help you a lot in taking your mind off Lupus till the end of the day.
Thanks Lewy for this thread.You took the words out of my mouth..Dawn,I like that you have Lupus and not the other way round and as such it should not beat us down but we should live through it.Lewy I quite appreciate the need for this thread as a male you are isolated and its harder when you have know one to talk to .I was diagnosed 8yrs ago and for the past two years I have been on remission, very mild flares occasionally but I have been alriight.A positive attitude towards Lupus is to live your life as normal,take everyday as it comes,take your medications,attend your clinics,and try as much as possible to avoid things that could trigger it.I wish everyone good health this new year.
Well I feel you have missed the point of this site,no its not for people to moan all the time,but if they do this is the site to do it in,that's why its called Heath Unlocked,and its also from reading some blogs have helped me understand Lupus better and this has let me to help other people understand.
As you know Lupus is a Lonely Illness to have,we try not to moan to family as they don't fully understand the illness,But we Do and try and help in any way we can on this site to share the Joy's & the Pains.
I had Lupus for 22 years.Lupus does not control me I control it,and with out that help of Lupus U/K and the books that were around in those days i don't know where i would have been.
I am also a contact for Lupus and have tried to approach that task with positivity.
Lewy i'm not getting at you but not all Lupus sufferers are as positive as you
and i hope you will keep on this site and give the guidance so badly needed to new Sufferers with the positive attitude you have, you will be a ascent.
Thanks for your response. I agree with what you are saying and feel I may have come accross as a little bit heartless or agressive when stating my case.
I believe this a great forum for inceasing our knowledge and awareness of what symptoms others are feeling and actually alert us to issues we may not have previously been aware of.
My point being I would like to hear about how we manage and what's good in our lives. I think this will really support lupus sufferers in crisis and probably encourage more people to blog.
Thanks, I will continue to use the site and hope to help anyone as best I can!
Hi I think at times you need to hear honesty and someone being positive. Not that long ago I bloggd about giving yourself treats sit with a hot cup of tea and fav biscuit , or happy film etc but for the last 3 weeks ive been struggling with sleep i was coping ok until my mum said im not doing enough through the day where i think its the reverse that im so tired that my body clock is out that wound me up so much because its so easier said than done, i think you go through so many emotions thats why i think this site is great and you do need to talk about things and get them off your chest so your not stewing on things. I do believe that when your up life looks alot clearer but when your down you cant see the wood for the trees, so please all keep typing it helps get a balanced view.
I think it's normal to go through a range of emotions when first diagnosed with any serious illness-emotions that are all over the place. But I have found that most people find within them a strength they may not have known they had and decide to fight like they have never fought before. That isn't to say we won't have our pity parties from time to time, but I have yet to see anyone who has given up on life upon a difficult diagnosis of any kind. Quite a testament to the human spirit, I think. Also why support groups-even online-are so important.
I always say that you should celebrate every small victory. If you have a good day acknowledge it. Its all too easy to count the bad and take the good for granted.
I spent 4 years unable to read a paper or do the crossword. My vocab collapsed and would loose the thread of a conversation mid sentence. I slurred when I was tired.
But I have now had 4 books published and regularly contribute to a national magazine. You will get your life back. Remember that.
I was diagnosed last year and put straight on to the Hydrochloroquine, and I have been suffering form debilitating migraines for years and years and usually most of the week i was in bed with them now I have none and its brill, so being diagnosed made one part of my life much better
ive been diagnosed for the last 16 years and its just a part of who i am, i think some people tend to lose their identity and be consumed with every minor hiccup along the way.. as we all know it might be a little cold one day and the next its hospital for pneumonia!.. but im not going to give up on my goals.. i may be a little slower getting there, my heels may not be as high as i like, but heck im still Kate and i have no intention of giving up or giving in!!
I think being lupy is who I am , I am grateful to have it a way as I have met so many lovely people and also learnt alot about life and who I am .
do I get tired Yes , but I like to sleep, to I ache, yes but at least I know I am alive, and would I change anything in my life NO..... the human condition is about suffering and wanting we something we don't have as we think it will make us happy.Happiness to me is seeing the flowers, smelling the toast burning in the toaster ( everyday ) and have the people I love around me. Happiness is fleeting as is every emotion, we are what we think so always try to think happy , even when the clouds are above you, and remember there is always someone worse off than you .
I am 42 years old I was diagnosed with SLE lupus eight years ago. After a few years experimenting with medication (through my rhumetologist)my Lupus is under control as it is going to be, I have the odd flare up and good and bad days.
I also
Work full time and manage a great team of people in IT
I am married to a very understanding and loving husband and we have a lively hyperative daughter
I have family and friends who I love and support and they me
I jog 3 times a week approx 3km
I enjoy family holidays in the UK and abroad (sun factor 60 all the time!)
I would say I am like most people that post on this site- getting on with things, trying not to feel too sorry for ourselves and appreciating how precious life is.
I do find this site a life-line as I feel it is a safe place for me to ask and answer the questions which come to you in the dark times.
hi there well ive been diagnosed with lupus since i was 17 im now 35 the drs told me this that & the other the normal u cant do this dont do that dont recomend kids yarda yarda,.......
so i have 3 lush boys aged from 12 yrs down to 4 yrs old i have a 50+hrs job aweek as a childminder on average have up to 8 children in my house at any one time i love prooving the drs wrong as a rule lol and no matter how sick i get when i have my flare ups i still keep them drs on their toes in the hospital, i live with a big smiley face every day and the thought of possitive mind possitive thinking xx
I had been very ill since around March 2010 and finally in October 2010 my work "let me go". I was told repeatedly that I wouldn't get another job but I proved them all wrong. During my time off I took my archaic kitchen all the way back to the brick work and rebuilt myself. It's the first room I walk into every time I come into the house and no matter how bad I feel I can look at it and say "I did this when no one thought I could..." Since then I now have a full time job in a warehouse.
Wow!!! I love all these responses......It's fantastic that we acknowledge how lucky we are as opposed to that bad luck we have experienced!! Really happy to hear from you all!! I'm doing really well also at moment, busy at work, hitting gym...little bit of a rash on me elbows.....I'll just wear long sleeves!! Wooohooooo!!!
Thanks Lewy for starting this thread... I have only very recently been diagnosed with Lupus, wellif you call my having to ask rheumatology nurse if my blood results had showed anything and her saying 'what you mean about the lupus'... I have been told nothing at all about Lupus, given no information or advice just told to 'keep taking the tablets'... So for me the web has been my only source of information and most oif it can be pretty frightening and very negative. Its nice to have found some people with a more positive outlook. This thread and a FB group I have found has restored hope to my life. Im only 41yrs old and not ready to give up yet.
Did you want me to send you one of our free lupus information packs in the post so that you can learn a bit more? If you would, just send me a private message or email me at paul@lupusuk.org.uk with your name and address.
Thanks Paul but Ive got one I found you on the web & you commented on a post of mine a few weeks ago and sent me the pack very usefull.
Im going to email you about some posters & info for work, I work for an out of hours GP practice and think would be good to get the word about as many of my colleagues know very little about lupus. x
There was a lady on the site running marathons...I think she was picking back up a thing she use to love to do, and going at it slowly....That was very inspiring
It would be nice to see this post continued. I'm actually addicted to this forum but beginning to find it depressing. How about some uplifting stories too
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