Below is an e-mail I sent to Geoff, a friend who is going through steroid withdrawl. The pictures Geoff kindly sent me and offered for them to go up on the blog. Cheers pal.
Thanks for the e-mail, I really appreciate you getting in touch and sending through the pictures. When I look at them, all I see is myself a year ago and I share your frustration and pain. It's a frustrating stage because you feel fine, but your skin is holding you back. I compare it to being in the body of an 80yo man, where the mind is willing but the body is all stiff and sore. It took me about 4 - 6 months before I was back doing normal stuff. Initially I found that I just had to go through the healing process and there was nothing I could do to speed it up (first 3 - 4 months), but after that I do have some tips that might help you:
1.) Sun bathing - I could only manage 5 minutes at a time, which I worked up to 10 minutes after a few weeks. The research on sun light is very strong and really made a difference. Be wary, the heat will make you itchy, so don't force it, just get sun when you can and be prepared to cool your body down with cold compresses when you've had enough.
2.) Walking - Keeping your body active is vital. When I'm active I heal much much quicker. This said, it's important not to over do it. I avoided all gym sessions and strenuous labour because I didn't want the blood vessels to dilate, that's a recipe for going backwards, but walking and breaking up the dry skin is really good. It also sends a message to the body to work as efficiently as possible. Whilst I can't back this statement up with medical facts, it really does make sense. For instance, have you notices that when you are active your brain functions faster? Thats because your body is working at a good pace, the hormones are firing and the engine is ticking over. Spend a week laying on the couch and whilst the relaxation is lovely, the mental cognition will be stuck in 2nd gear.
3.) Pushing through the pain - Just recently (month 7) I've got to the point where my skin colour is largely normal, but there is still a coating of dry skin on top. When I say dry skin, it's not noticable and it's very fine, so my black suits stay crisp, but it's uncomfortable and if I get hot or raise a sweat I'm scratching at various areas on my body. What I noticed, was playing sport and actively making myself sweat was itchy and horrible that day, but a couple days latter that problem area healed up and the dry skin vanished. These patches will come and go and move around the body, but it seems like once an area is healed, it is healed for good.
Now I also want to touch on diet
Not everyone agrees, but the following is based on my experience, research and conversations with others going through TSW:
1.) Eat healthy - Cut out the fast food, white carbs and gluten
2.) Cut out sugar - Processed sugar is the devil, it steals vital nutrients from the body and retards your ability to heal. Of course you don't have to be hard line about it, but a simple reduction like cutting out soft drink (soda) can make a noticeable difference.
3.) Supplements - If you heed nothing else, do this. Go and buy Cod Liver Oil tablets. These, along with Prime Rose oil tablets made a massive difference to my recovery. The science is clear cut and brilliant, Cod liver oil is amazing for skin. Get on it, not fish oil, or Krill oil, but Cod Liver Oil.
4.) Water - Make sure you hydrate your body. Drink plenty of water and give the skin every chance to heal
Finally, lifestyle tips that made me feel better
1.) Establish sleep patterns - This really hard to do when your cortisol levels are all over the place like an Indian taxi driver (I thought that was funny joke, sorry to my Indian mates). I made myself go to bed at a certain time and stay in bed until it was time to get up. Initially this was terrible, I just couldn't sleep, but over time my body got use to the pattern and I started getting full nights sleep and my recovery sped up.
2.) Reduce stress - Don't look at this recovery as a bad thing, look at it as an opportunity to address issues that you've ben putting off for years. For me it was stress. I focused on taking time to relax, meditate, watch TV and crank good music. I actively felt my body unwind and heal. IT has been shown that the body heals best during sleep, so the logical extension is to reduce stress and chill the heck out!!
3.) Positivity - It's infectious and it has amazing results. This advice extends to every aspect of life -> Focus on the end goal, how amazing it will be when you are healed and all the things you are going to do. I actually wrote lists of all the things I wanted to do when I was healthy again. In my mind I lived it every day; partying, playing sport, doing a dance class, having coffee out with mates, surfing... the list goes on forever and the coolest thing is, when you get out the other end, you've had a chance to take stock and assess what is truly important to you. I can't tell you how happy I am right now with my life, love and friends.
4.) Tell people what you are going through - I learned this one late, but after I posted the blog on Facebook and told all my friends what I was going through, I felt an amazing weight lifted from my shoulders. My family and friends rallied around me and no longer was there a white elephant in the room. This allowed me to go to work, miss social engagements and go out in public all red in the face... and it just didn't matter. When everyone knows the score, they focus on the positives of the game. I believe this very very strongly
5.) Focus on the opportunity - As said under positivity, this is a massive opportunity for you. Never in your life do you get a chance to just stop and think. This is the world forcing you to chill out, and think. They say prisoners remember thousands of obscure memories from their past, gain a deep and profound understanding of themselves and become stronger people for it. Thing about that for a minute. Here's a criminal behind bars, and they are achieving a level of enlightenment that most pay thousands of dollars for. This is your opportunity to follow their lead, reflect on your life, those around you and how you want to live your life going forward... I'm tell you, this could just be the most pivotal moment of your life...Embrace it!
Reading back over this e-mail, I really strongly believe everything I've said. I will admit that I'm currently sitting in a cafe on Chapel st in Melbourne, Australia and with the music playing and people buzzing around, the grammar probably isn't going to win any awards, but the message is worth paying attention to. I'm going to post this on my blog, and would love any comments about how it helps, or doesn't help over the course of your recovery.
Stay in touch Geoff and let me know how you get on.
BTW, I'm going to be in Cincinnati & Boston in September. If there is anything I can do for you then, just let me know.
Josh Strawczynski
Picture: Me (Josh) after 7 months of TSW recovery
Hey Geoff,Thanks for the e-mail, I really appreciate you getting in touch and sending through the pictures. When I look at them, all I see is myself a year ago and I share your frustration and pain. It's a frustrating stage because you feel fine, but your skin is holding you back. I compare it to being in the body of an 80yo man, where the mind is willing but the body is all stiff and sore. It took me about 4 - 6 months before I was back doing normal stuff. Initially I found that I just had to go through the healing process and there was nothing I could do to speed it up (first 3 - 4 months), but after that I do have some tips that might help you:
1.) Sun bathing - I could only manage 5 minutes at a time, which I worked up to 10 minutes after a few weeks. The research on sun light is very strong and really made a difference. Be wary, the heat will make you itchy, so don't force it, just get sun when you can and be prepared to cool your body down with cold compresses when you've had enough.
2.) Walking - Keeping your body active is vital. When I'm active I heal much much quicker. This said, it's important not to over do it. I avoided all gym sessions and strenuous labour because I didn't want the blood vessels to dilate, that's a recipe for going backwards, but walking and breaking up the dry skin is really good. It also sends a message to the body to work as efficiently as possible. Whilst I can't back this statement up with medical facts, it really does make sense. For instance, have you notices that when you are active your brain functions faster? Thats because your body is working at a good pace, the hormones are firing and the engine is ticking over. Spend a week laying on the couch and whilst the relaxation is lovely, the mental cognition will be stuck in 2nd gear.
3.) Pushing through the pain - Just recently (month 7) I've got to the point where my skin colour is largely normal, but there is still a coating of dry skin on top. When I say dry skin, it's not noticable and it's very fine, so my black suits stay crisp, but it's uncomfortable and if I get hot or raise a sweat I'm scratching at various areas on my body. What I noticed, was playing sport and actively making myself sweat was itchy and horrible that day, but a couple days latter that problem area healed up and the dry skin vanished. These patches will come and go and move around the body, but it seems like once an area is healed, it is healed for good.
Now I also want to touch on diet
Not everyone agrees, but the following is based on my experience, research and conversations with others going through TSW:
1.) Eat healthy - Cut out the fast food, white carbs and gluten
2.) Cut out sugar - Processed sugar is the devil, it steals vital nutrients from the body and retards your ability to heal. Of course you don't have to be hard line about it, but a simple reduction like cutting out soft drink (soda) can make a noticeable difference.
3.) Supplements - If you heed nothing else, do this. Go and buy Cod Liver Oil tablets. These, along with Prime Rose oil tablets made a massive difference to my recovery. The science is clear cut and brilliant, Cod liver oil is amazing for skin. Get on it, not fish oil, or Krill oil, but Cod Liver Oil.
4.) Water - Make sure you hydrate your body. Drink plenty of water and give the skin every chance to heal
Finally, lifestyle tips that made me feel better
1.) Establish sleep patterns - This really hard to do when your cortisol levels are all over the place like an Indian taxi driver (I thought that was funny joke, sorry to my Indian mates). I made myself go to bed at a certain time and stay in bed until it was time to get up. Initially this was terrible, I just couldn't sleep, but over time my body got use to the pattern and I started getting full nights sleep and my recovery sped up.
2.) Reduce stress - Don't look at this recovery as a bad thing, look at it as an opportunity to address issues that you've ben putting off for years. For me it was stress. I focused on taking time to relax, meditate, watch TV and crank good music. I actively felt my body unwind and heal. IT has been shown that the body heals best during sleep, so the logical extension is to reduce stress and chill the heck out!!
3.) Positivity - It's infectious and it has amazing results. This advice extends to every aspect of life -> Focus on the end goal, how amazing it will be when you are healed and all the things you are going to do. I actually wrote lists of all the things I wanted to do when I was healthy again. In my mind I lived it every day; partying, playing sport, doing a dance class, having coffee out with mates, surfing... the list goes on forever and the coolest thing is, when you get out the other end, you've had a chance to take stock and assess what is truly important to you. I can't tell you how happy I am right now with my life, love and friends.
4.) Tell people what you are going through - I learned this one late, but after I posted the blog on Facebook and told all my friends what I was going through, I felt an amazing weight lifted from my shoulders. My family and friends rallied around me and no longer was there a white elephant in the room. This allowed me to go to work, miss social engagements and go out in public all red in the face... and it just didn't matter. When everyone knows the score, they focus on the positives of the game. I believe this very very strongly
5.) Focus on the opportunity - As said under positivity, this is a massive opportunity for you. Never in your life do you get a chance to just stop and think. This is the world forcing you to chill out, and think. They say prisoners remember thousands of obscure memories from their past, gain a deep and profound understanding of themselves and become stronger people for it. Thing about that for a minute. Here's a criminal behind bars, and they are achieving a level of enlightenment that most pay thousands of dollars for. This is your opportunity to follow their lead, reflect on your life, those around you and how you want to live your life going forward... I'm tell you, this could just be the most pivotal moment of your life...Embrace it!
Reading back over this e-mail, I really strongly believe everything I've said. I will admit that I'm currently sitting in a cafe on Chapel st in Melbourne, Australia and with the music playing and people buzzing around, the grammar probably isn't going to win any awards, but the message is worth paying attention to. I'm going to post this on my blog, and would love any comments about how it helps, or doesn't help over the course of your recovery.
Stay in touch Geoff and let me know how you get on.
BTW, I'm going to be in Cincinnati & Boston in September. If there is anything I can do for you then, just let me know.
Josh Strawczynski
Pictures: Geoff after day 36 of TSW recovery
Hi Geoff, Really, this is a bloody nightmare, and I know your skin well as my partner Jake went through TSW last year.
ReplyDeletemy blog www.eczemahealing.blogspot.com.au
I just wanted to say that although it seems that this will never end, it does, well and truly, for ever (if you look after yourself).
Jake is healed, and now does not use anything on his skin, no moisturiser, oils, anything.
He sleeps naked now (this is the first time he has ever done that with no oil/grease/cream on him).
His skin is smooth, normal.
We still keep going with a great diet, no gluten, dairy and only natural sugar... and as Josh said, we also take Cod Liver Oil, Evening Primrose Oil, also Glutamine tablets (which heals and protects the gut against anything bad you may eat, or anything that may irritate the body) also Magnesium powder for healthy cells, Vit B & C.
I Promise that this will be over, and you'll look back and remember it as a life changing positive experience.
Good Luck,
Libby
JOSH YOU'RE THE BEST EVER!
ReplyDeleteThanks gorgeous girl.
ReplyDeletexx
Geoff, I am so so sorry you have to suffer this, but it really does and will get better. Josh has some really great advice, and so hope it helps you get through.
ReplyDeleteGood luck.
Great blog, brill post and much love and healing to Geoff and Josh xxx
ReplyDeleteThanks Miss Kitty, we really appreciate your message of support.
DeletePlease keep writing us, we love the comments.
Geoff, thanks for being brave and posting the photos. It's clear to see why they call it red skin syndrome.
ReplyDeleteI am 16 months into withdrawals and promise you that it will get better. I wish you all the best with your healing.
Josh, you are a good friend to those suffering. TSW gives us empathy and makes us better people for it. It the one good thing that comes from all this. Great job mate. X
Thanks Louise, everything is continuing to improve, no doubt helped along by the amazing support I have received from people like yourself.
ReplyDeleteLots of love & positive vibes.
xx
Hello all, this is Geoff, posting on SarahZ's blogspot.
ReplyDeleteA bit of an update. I am on about day 55 and look quite a bit better at the moment. Red is mainly on face, neck and arms. Shortly after those day 36 pictures, I turned over all red on chest back and belly but have since then had much of the red leave the back and chest, leaving dry patches of flakey bumps on the back. Wow, I had no idea what pain and suffering were all about until this. I will have a couple of days of feeling pretty good followed by just being smashed with burning and itch. I have also noticed that I don't sweat in the afflicted areas and once I get hot, I get to feeling pretty bad. It is spring here and I have been getting lots of sun. I try to keep the sun off my neck and arms for more than 10 minutes at a time or so. My face however gets probably more than it should. I weare large hats and wrap a cotton cloth about my neck but think that I have sunburnt my cheeks and forehead a time or two. My family has been the greatest. They tell me to keep on and get this behind me and that they are fine, but I know that it is very strange to have me down and out of commision for days at a time. I am normally very active and that is what I am missing the most. A good run or an hour in the gym with some heavy weights is really sounding good but if I do much over a slow walk it seems to make me turn bright red and itchy. It is so good to know that there are others out there who have been thru this before me and have come out of it well. I thank you all for the encouragement and can't tell you how much it means when you find yourself thinking, "it's been weeks since I felt good, how long can this go on?" I wish I had some good news for fellow sufferer's but I must warn you that there are days like this that you just have to get thru. Blessings to you all and may your healing come fast and sure. Geoff
Hey Geoff,
ReplyDeleteThanks for the update mate, I'm so glad to hear you going through the recovery stages, you are getting closer for sure.
Everything you have described sounds familiar, I remember all too well the pain and suffering you are talking about and the overwhelming desire to do something fun. Just got to remember to chill and take it all in.
I'm wishing you all the best buddy.
Josh
Hi Josh,
ReplyDeleteMy name is Ashley and I'm 16 years old. Today is my first day of cutting out steroids and hydro-cortisone creams. This post is very informative and I intend to stick to this as much as I can. My only concerns are that I'm starting a medical academy program tomorrow (which has already been payed for, unfortunately) and I wonder if that may be an issue seeing as its so early in my recovery. Also, with school starting in September, I'm concerned that my recovery will be put at stake upon returning. I've heard many stories of children being pulled out of school and I'm curious as to whether or not you think that may be a good option for me, considering the courses I'm taking will be all college and advanced level and will probably be a major source of stress, not to mention gym classes and the like.
Thanks for the great post!
Ashley
Hi Ash,
ReplyDeleteThanks for the message, I'm glad you did.
You are lucky that you are a decade younger than me when you are starting, so hopefully you will rebound a bit quicker.
Personally I would recommend pulling out of the academy, or more correctly deferring it for 12 months. I'm heavily involved in the tertiary education sector here in Melbourne and I know from experience that these sorts of places would prefer you be healthy than sick in their course.
The side affects of cortisone withdrawl are debilitating, you will have to cut out all sport, including most movement. The first few months are very hard, you don't want to move a muscle, but once you get through it, then you're clean and clear!
I've been helping a few people just starting out and everyone has the same problem, they don't think they can stop their life for a year. What's interesting is that when you do stop doing things and focus inwardly on yourself, you actually find a lot of good + you're xbox skill are going to get much better. Just kidding.
Let me know how you get on pal.
Josh
Thanks for the advice! I'll see how the first day goes and then make my decision.
ReplyDeleteIt's really great to see that there is a large number of people out there to look on for support during this. It's probably the only way I'm going to stay sane!
I'll be sure to keep in touch
Thanks again!
Ashley
H Josh - thanks for the words of wisdom. I am in week 4 and nothing short of miserable. Reading about other's experiences and perspective on this monster really does help and helps to get my mind right again...what little there is left :-)
ReplyDeleteAnyway, thanks again, and here's to being back out enjoying some patio time again soon!
Cheers!....Krista
Hi Krista,
DeleteYou are most welcome, having been through this I completely understand the journey, the emotions and the mental barriers that you face. I'm currently helping my friend's girlfriend who is at day 50 of the recovery, so I suspect you are both going through the same stuff.
It's a terrible hardship, but keep focused on the light at the end of the tunnel. There is plenty of medical evidence to show the body heals quick if you are optimistic. In this instance, you are investing a year of recovery for a lifetime of beauty and perfect skin.... what a deal!
Stay in touch with me, feel free to add me on Facebook or LinkedIn (or anywhere else you can find me).
All the best,
Josh