Don't Give Up: Just joined this site. I was... - LUPUS UK

LUPUS UK

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Don't Give Up

Johnnyb10 profile image
5 Replies

Just joined this site. I was diagnosed with lupus in 2008 after been ill on and off for years. At the time I was diagnosed was ill for 4 months. My consultant said I had lupus for 5 years previous to being diagnosed.

After steroids for 6 months my condition has been managed with hydroxychloroquine. However last year the impact of lupus reappeared, at a routine lupus check up it was found I had a heart murmur. Further tests showed I had a severe leak of the heart valve (caused by lupus) and I needed heart surgery. I had the surgery last August and it took 3 months to fully recover. I am now recovered and back running 3 times a week

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Johnnyb10
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milkwoman profile image
milkwoman

Wow - you've been through a lot! So glad you are doing so well now - CONGRATS!!! A positive outlook and a stubborn attitude to "never give up" goes a long way with this disease, doesn't it? 😊

I've had two surgeries myself this year - couldn't work out for 8 months. I'm now fully healed and have been back into a consistent exercise routine (HIT cardio, core and resistance training) for 9 weeks and getting stronger everyday. I still have days where disease activity is high and I'm pretty much a couch surfer (hate those days) so I rest and then come back and continue on. I call it "climbing the mountain" and unfortunately, life with lupus (and Sjogrens and hypoT) means having the strength and stubborn will to climb that mountain over and over again. I like being fit and strong so that's my motivation to keep at it.

Thank you for the positive and encouraging post! You look GREAT and my wish is that you remain healthy AND continue to do anything (and everything) you wish! Lupus will not win!

Johnnyb10 profile image
Johnnyb10 in reply to milkwoman

Thanks for your lovely response I will be doing a 4 mile Go the extra mile run for lupus in the morning

milkwoman profile image
milkwoman in reply to Johnnyb10

Good luck with the run! 😊🏃🏻💪🏻👍🏻

Wendy39 profile image
Wendy39

It's great to read your positive post about your recovery. Thanks for sharing your story with us. There have been quite a few new members recently, coping with the news of a Lupus diagnosis. Your journey will show them that life does carry on with lupus. Well done on the running too! I used to run. I've done a few half marathons. But now with lupus and osteoarthritis in my hips, knees and back, I have been advised not to. 5 years on and I still miss it! Apart from anything, I could eat what I wanted without gaining weight!

Johnnyb10 profile image
Johnnyb10 in reply to Wendy39

Thanks Wendy

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