All thou ive been diagnosed for 3yrs i realised t... - LUPUS UK

LUPUS UK

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All thou ive been diagnosed for 3yrs i realised that i had this on its path for 26yrs so i just wanted to give some hope and smiles.

NiksB profile image
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I have become stuck at home for the last 3yrs since my last bad bout of plerisy etc and after that i got the diagnose of mixed connective tissue disease( which just means its a mismash of auto immune diseases) and ive had weird and strange things going on for 26 yrs, But finally i had a name/label for what was going on and i was so so happy to know i wasnt a hypocondreact. Then i think i thought well i now can get better and of course im taking anti malaria pills which have helped with mosi bites and less infections but im not running any marathons or climbing mountains im exhauted at the weekend just having my husband around and doing all the small and large jobs i cant do but i watch him do with ease.

I suppose what im trying to say is i have a label but that hasnt changed whats happening to me...

i have become an unsure person when i was strong and indepentdant,

i have become a couch potatoe when i used to do diy and work full time 8hrs on my feet and still go to the gym

I struggle to chat with friends becuse it hurts to laugh and you know you will pay the next day or the day after

I have to plan days off when i used to plan to fill my days

BUT i realised that this didnt happen when i got the label but gradually over the last 11yrs. So what im trying to say is i wonder if for most of us that this is a disease which creeps up on you and we have tried to ignore and dismiss for years and struggled on until one day when someone says its ok you arent going mad but i think the fight then starts because you have everyone elses opion of how ill you should look and why can you do that but not this etc.

The wonderfull thing is i have found im not alone with this site and that has made a big difference on how i think of my illness I am NOT DISABLED i might have a disablilty but im still me and i want people to see me not the illness which trys to control my life.

So what if ive changed i am still fighting to keep me as me and i think im happier now than when i didnt know what was going on if the doctors had missed cancer. One doctor i wont name said 10yrs ago just go home and make the best of it and at that point i thought i was going to live out my days in a wheelchair, i still struggle but im not going with out a fight.

I now love to see the sun and feel the warmth i feel my life is what i make of it so im darn well going to get my moneys worth (last year went to Australia saved for years and years) it was fab, im very lucky.... on to the next adventure..

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Hi your post here and your positive attitude could really inspire others to feel the same.We are not and never be alone,We are stronger in numbers....we have a group were positive people are an asset,,hey we all have up and down days and support is the main thing we need.Find us at Facebook,,,,,Lupus is real!! Regards Dawn.

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