Big low for me today, I worked a 65 hours in 5 days/nights in the build up for an event in work... I now live some 4 hours from my original home where my wife and kids have been for the past week getting ready for a big reunion of friends as my pal is back from Australia with his new wife and baby boy... I had planned to head down today for the big night get together... I think I burnt myself out and have woken to the worst flare in some time, skin lesions and face, mouth and genital ulcers (pain) I just can't face the drive etc so I'm staying at home to get some rest... feeling gutted and angry at the timing of this unpredictable relentless disease!!!
Sorry guys I just had to get that of my chest👍
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Hampo81
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No probs rant as much as you need. I do know how you feel and you are correct in thinking the long hours at work and travel have probably brought on this flare. Don't know how long youve had Behcets, me...32 years...and over 20 years till I learned that I must pace myself. I bet you were feeling so good and thinking hey I'm on top of this illness, then bang...it does a upturn on you!! You have to first accept you have the illness and then remember to pace yourself everyday of your life, and rest when you need to not want to. You also must try even on your worst days to get up and do some gentle stretching and fresh air is important.
It shocks me how misunderstood this disease actually is, and how differential it is to each of us... we all wait years on diagnosis to then seek a miracle medicine, we all try every medicine put in front of us in the hope for normality... but I believe there is no normality, no bechets, no Lupus, all just crazy overactive immune systems acting different to everyone...
I feel like stopping all meds, and going completely organic food wise, and keeping as fit as I can drinking only water etc, I tried this at the start of the year and had a nightmare of a time, but I'm thinking all these drugs are messing with the immune system and when we stop it goes a bit chaotic!!' I would love to know if anyone has gone drug free and stuck with it to find symptoms ease even slightly?
I have been drug free for 4.5 years but that was after heavy chemo to reset immune system. About to have more. Immune system doesn't settle on own usually without treatment, but, once settled, less is more for me medication wise until it has to be squashed again.some meds need to be weaned off, like steroids, and can be dangerous (even fatal) to just stop.
i am on half dose of colcrys. i work out and eat clean. i do not eat sugar. i make sure to sleep well every night and do not over do it (aka working 65 hours in a week is overdoing it) my regimen maintains a lot of symptoms and gives me a ton of energy. the only time i get ulcers or joint pain is if i am stressed or haven't slept well for a few days.
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