Hey,
Felt like giving you folks an update of my current TSW predicament. Still not 100% over the line yet. Up and down, up and down, round and round, round and round the bizarre and maddening pattern of withdrawal I continue to go. Are you riding along too?. Face, neck and hands are the most stubborn area's of flaring. Sleeping or lack of it is still not quite there yet. I wake up a few times during the night, every night for the record to have a scratch, but quickly fall back to sleep, thankfully. Just a bit frustrating that am yet to manage a perfect, uninterrupted full night's sleep from dawn to dusk like one could manage, pre TSW. I guess patience is something you learn to accept and have during withdrawal.
With all that being said, life is definitely more bearable with each new, passing month. When I do have a "big" flare, my body & irritated spots heal much more quicker. I can have a bad day with tearing my skin up, then wake up the very next day, shower and get on with it. No big deal I suppose. I only put a tad of Shea butter on the driest of places, once per day in the morning now after showering for your information. Maybe once or twice I'll put a small bit of Shea on during the day if needed, but, not everyday that is.
A week ago I took the plunge and decided to attempt backpacking around South America. My trip started in Guayaquil, Ecuador last week. Quite a bold move you say, no?. The reason why is to see if being in the constant warm & sunny weather would finally see my skin fully recover. Also, it's nice to have some sort of adventure. I've been wearing shorts and t -shirts on the regular over the last few days. This is a huge milestone for me, as it's been years since I've had the confidence to do such things. Simple things, yes. But, simple things I can 200% bet you will and would be able to relate too, dear reader.
I plan to stay in S A for at least three months minimum. This is just to see how my skin reacts. If it's a positive reaction then I guess I continue the adventure. So far so good am glad to report!.
There you have it. Just a quick , short update for you. Four years have now passed with this monkey on my back. How long left?. Who knows... I will keep posting until that day comes, so we shall find out!. Slowly but surely getting there. As I touched on earlier, patience is the name of the game for me at this particular stage of TSW.
Hope the update pleased you!. How have you been doing lately?, Drop me a comment, please!.
Keep fighting on my friends!.
Cheers,
Gary
Hi Gary, my name is Rona. I'm a fellow tsw warrior, just passed my 51 month mark. I seem to have finally turned a corner AND I feel cautiously optimistic as there have been many ups and downs in my journey too. I've been following your blog and I sure do appreciate you writing it. I can relate to much of what you write and it's a great and comforting thing to not feel alone in this. I want to thank you so much for writing your blog. I hope you have a wonderful time in South America and heal 100% very soon! 😊
ReplyDeleteHi Rona, massive apologies for the reply time. I attempted to reply a few times but the message wouldn't publish.51 months is quite the feat. Congratulations on making it that far. Also, glad to hear that you've turned the corner.Thanks for the humbling comment. It means a lot. All the best and thanks again!.
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ReplyDeleteGary
ReplyDeleteThanks for keeping us updated with your progress. I will be three years TSW in Sept and my recovery sounds almost a carbon copy of yours. I’ve found that although the general level of inflammation has decreased (the flares are milder and shorter lived) the itching can be still awful and normally concentrated in the same areas that you spoke about – hands, wrists, neck and face. I can’t help thinking there are important clues in this pattern that someone with a medical background should investigate. For me it almost feels like the skin problems are simply the most obvious manifestation of an underlying problem that extends deep into the body effecting nerves and lymph nodes – hence the isolated areas that undergo intense itching. Despite descending into scratching frenzies I’ve found that my skin is both paler (even though its itching) and able to withstand quite vigorous scratching without breaking. Obviously, it still breaks if I continue to scratch but it also heals quicker. The scratching also feels like its releasing something – almost like it’s part of the healing process (shifting toxins etc). None of this ever makes any sense to the dermatologists I’ve spoken with who just look at me a wry smile (probably thinking another deluded patient who spends too much time Googling). Like you although my sleep is better I never get a full night rest but the days of lying in the dark for literally hours on end (sometimes all night) scratching and jolting with strange nerve tremors seems to be fading into the recent past. Like you I sufferer the full atopic battering and have found as my skin has calmed slightly my asthma has picked up so that I suffer cycles of wheeziness as the immune system settles then decides to blow itself apart. In the past I’ve noticed that my symptoms, both in terms of skin and chest, improve when I’m in a warmer climate. I’m seriously thinking about moving abroad to improve the quality of my life so I’m very much looking forward to your report once you get back from South America.
Hey C.F, Cheers for the comment. Yeah, we kind of have the same healing cycle from reading your message. I really think that healing the gut is key. I'm kind of in the middle of an experiment to see if I've possibly found the answer.I plan to update the blog a.s.a.p when I get some kind of result so keep your eye out for the next post. Just wanna say again, thanks for the support and your comment. One day this will all be a distant memory. Take care.
ReplyDeleteGlad to see ur doing well and living the life Gary.
ReplyDeleteGary, I'm not sure if you'll remember but I spoke briefly with you on your blog around August last year. I was just curious to know how your skin is doing with the change of climate? And I had a question about sun beds.. I think you mentioned in one of your videos or in a post previously that you had have sun beds a try? I was just wondering how that worked out for you and how often you used them etc? Every time I go abroad the sun clears up my break outs so was going to maybe try using sun beds maybe a couple times a week.
ReplyDeleteHope your doing good mate.
Cheers!
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