5 QUESTIONS WITH: Zip from The Wulf Runner

I am back with another 5 QUESTIONS WITH and this time I am welcoming to my blog Zip from the very inspirational Instagram account The Wulf Runner (here). I have known Zip for well over three years - first on Instagram, then in person - and now I feel lucky enough to call him a friend. The loveliest thing about this process is the friends you don't realise you will make. Zip went through withdrawal in 2015 after using topical steroids for 38 years. His transformation is just amazing and I am so excited to be able to have him on my blog. Zip also writes rather beautiful poetry under the Instagram account The Ballad Of The Wulf (here), but just a little word of warning, some of it might make you blush ... and on that note, I'll hand it over to Zip:

1) Tell us a little bit about yourself and your skin journey.
I've had what I believed was eczema for most of my life - as far back as I can remember (my mother believes I was around 4 or 5) and wondering why my skin couldn't be normal like other peoples. I remember the never ending cycle of visits to the doctor, prescriptions, creams, emollients, bath oils, wet wraps and the hospital stays. I scratched constantly - sometimes because of itchiness and a lot through habit. I also remember the anxiety about how I looked and what it meant for my interactions and relationships with other people and how it impacted school, university and working life.

Zip during withdrawal.

2) How did you find out about TSW?
I'd been using topical steroids for almost 38 years and I was worried about side effects - particularly the hypo pigmentation and ease at which my skin was scarring. I searched the internet and came across pictures of someone in Topical Steroid Withdrawal and confused this for side effects whilst still being on topical steroids. It wasn't until a year later that I searched more thoroughly and came across the ITSAN website. I remember the overwhelming relief that came from reading story after story of people experiencing the same symptoms as me and finally an understanding about why my skin flared everytime I tried to stop using the topical steroids. It made me realise that I had been experiencing the symptoms of topical steroid withdrawal for a long time - at least 20 years or so.

3) Did you find that anything aided your healing?

In the end, I think my body needed time and also I needed to ensure I rested, ate well, exercised and did things that were good for my mental and emotional wellbeing. I believe that when your body has become dependent on topical steroids that it has stopped doing things that it should be doing such as the adrenal gland producing its own cortisol (anti inflammatory hormones) and needs to recover.   That to me was the key. I did other things along the way to make myself comfortable - Epsom Salt Baths when I was oozing a lot, antibiotics for the skin infections that I had when the skin was fragile, moisturiser withdrawal but in general make yourself as comfortable as you can and try to do the things you care about with the people you care about.

4) Sum up TSW in five words.
Preventable. Devastating. Isolating. Defining. Metamorphosis and I know this is cheating but Temporary!

Zip now!

5) What positives, if any, have you found from going through TSW?
I have learnt so much about my body and my mind both mentally and emotionally and feel so much more comfortable in "my own skin" literally.  I probably have more scars now (thanks to habitual scratching when my skin was very fragile) but zero anxiety about how I look so that I'm able to present the real, unfiltered me to the world. I've also realised life is too short and have been getting back to how I want my life to be. I have also found my faith in humanity is stronger than ever - a big shout out to the TSW community - you guys are so amazing and supportive and I could not have done this withdrawal without you! Big Love x 

To follow Zip's TSW Instagram account, click here and for his fabulous poetry, click here.

Thank you so much Zip <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)
Brittany Hallberg (here)
Emma (here)

Fear and the first four years after withdrawal

Taken this morning. No make-up or filters.

TSW milestone + Cara = blog post.

Exactly four years ago my whole world changed and what was once an existence of irritation, pain and suffering was suddenly something very different. I had recovered from topical steroid addiction. On Monday 17th August 2015, I remember sitting on the sofa and looking at my hands and seeing only clear skin. I then looked at my face - the same. Clear skin everywhere, and on top of that, no dry skin, weeping or irritation ... it was all gone.

When I tell people my recovery was that sudden, how am I meant to convince others when even I can't believe it myself. But for me it really was the case that one day I appeared to be in withdrawal, then the next, I wasn't. Like the ending of a film too good to be true.

But how?! You're probably wondering. My answer? I don't know. I don't have an answer for half the shit I went through for over two years of my life because unfortunately we've had to do it ourselves, a mini rebellion against those we are meant to trust, which means we doubt the process and fear we are never going to get better - or get better then flare again.

Fear, the most useless and, at the same time, most overwhelming of emotions. We don't want it, we don't need it, and yet we will always have it because life isn't simple. We see people's problems from the outside and know the answer as if it is the most obvious thing in the world, but it isn't, because it's not happening to you, but inside them. Fear can be crippling and through withdrawal it is the most concentrated form of it because it comes with PTSD and anxiety: memories of true horrors from your past that could so easily come back.

Through withdrawal the only hope we have at our disposal comes from a small handful of people who say they have recovered. Worldwide. And from those few, some flare again. That makes the after of withdrawal not so simple because we don't actually know what will happen and if after really is after or just some extended reprieve.

I have discussed it many times before but for over two years after withdrawal I felt as if I had this dark cloud of anxiety hanging over me the whole time filled with PTSD and fear. Storms of terrible flashbacks and memories of the trauma of withdrawal and the fear it was all just going to come back again.

Left: one of the first photos I took on the day I recovered
from TSW (Monday 17th August 2015).
Right: taken this morning, exactly four years later.
No make-up or filters.

My most vivid memories during the two years after withdrawal were the times where I would see a rash and feel my stomach sink before quickly smelling my arms as I desperately tried to determine whether that smell, so specific and prevalent through withdrawal, was back and my little piece of bliss was over. The smell has never come back, and it hasn't done for four years.

Just like my physical withdrawal, the mental recovery was equally as sudden and happened one magical day after filming Briana's documentary Preventable: Protecting our Largest Organ (here) in June 2017. I may still have anxiety, but I no longer have fear.

I feel sometimes like renaming this blog TIME, because time is all it boils down to. It's all I say now, as it is the only advice that truly means anything. We can take so many paths to try and get better and accelerate our 'healing', yet you can't cheat it because time is the only thing that will really help. And here we are four years later and I'm still ok. Better than ok.

TSW is a trauma that no one should ever have to go through but unfortunately for some of us it is the only option we have left and ended up being the best decision I have ever made in my life.

Now, I have been better for nearly double the time I was in withdrawal for and that in a way gives me some closure. I will never use the H word (healed *gasps*), but I no longer fear flaring or the future because I know that no matter what happens, time will pass and with it comes change.

Give it time.

Love
Cara x

5 QUESTIONS WITH: TSW Emma

I am very excited to be able to share another 5 QUESTIONS WITH you all today. The loveliest thing about our community is being able to meet others who totally get it - all of it - and I have had the pleasure of meeting my next guest to the blog who runs the very inspirational Instagram account, TSW Emma (here). Even more exciting, back in late 2017, I took part in a documentary Emma is currently working on titled, The Prescribed Addiction, which will be another much-needed documentary on our condition that I've also blogged about (here). When we first met in 2017, Emma was still going through TSW but today, she is out the other side and living life to the fullest. Her skin is absolutely beautiful and I just had to interview her on my blog. I also wanted to find out more about the route she took to get better which absolutely fascinates me. Taking immunosuppressants through TSW is a very controversial subject within our community and whilst I would not use them myself, I am always interested to hear about anything that could potentially help someone through withdrawal. I think I will leave it to Emma to explain the rest:

1) Tell us a little bit about yourself and your skin journey.
My name is Emma and I’m 28. My eczema started as a baby with a dairy allergy and as a child I remember little red patches on my inner elbows. Whenever the patches got out of hand, I would apply a bit of topical steroid cream to calm the eczema down. It was frustrating but never too severe.

Emma's skin during withdrawal.

In my early 20s it got worse and became harder to sleep, swim, shower or sweat without feeling discomfort. Eventually I saw a dermatologist and after a few topical steroid prescriptions (and one round of orals), I was given the immunosuppressant cyclosporine. It gave me the clearest skin of my life that far, but it comes with scary risks and I wasn't allowed to stay on it for a long time. 

For about two months after coming off cyclosporine I used topical steroids again. I soon began to notice large flashes of red on my arms and this was when I found out about TSW.

I didn’t go the ‘all natural’ route for TSW. I was adamant that the creams were the problem, but I still felt an obligation to comply with the doctor’s suggestions and tried to find a compromise, one that would also mean I was able to continue working throughout the process.

I went on to methotrexate in September 2017. I still don’t know if it worked or not; it can take up to 12 weeks to kick in, but I didn’t have clear skin for about a year. Maybe it made my TSW less severe, but I’ll never really know.

I tapered off the methotrexate over the course of 18 months. I have now been off it for nearly 6 months and it has been two years since I used topical steroids. I still have slightly sensitive skin, but I don’t have a single patch of eczema left. The freedom is incredible!

2) How did you find out about TSW?
After coming off cyclosporine and returning to regular use of topical steroids, I noticed my eczema spreading. I was getting these hot flashes of red on my forearms – like I was sunburnt – and my face was flaking, I had these tiny blisters on my skin and my eyes were always sore when I woke up. These were new symptoms that looked so different from the traditional eczema I had been used to, and my steroid creams weren’t calming the areas that they had in the past.

Emma's skin now!

I spoke to my dermatologist about it. He said I needed to moisturise as many times a day as possible and use the topical steroids all over my body, including my face. I remember feeling so defeated when he said that I would have this condition for my entire life and it just needed different levels of management at any given time, according to its severity.

So I took the prescription, but it didn’t feel right. Since I was a child I had it ingrained into me that topical steroids were for 2 weeks usage only and certainly not for the face.

When I got home, I took to Google and asked ‘why does my eczema look like sunburn?’ I instantly found ITSAN and blogs about TSW.

I’m a bit of a sceptic, so I don’t know why I believed what I read online when it was contrary to the advice of my dermatologist, but it just seemed to make so much sense to me, and I ticked all the boxes for the symptoms listed. So without giving it too much thought (please DO think it through!) I decided to give up the creams that same week.

3) Did you find that anything aided your healing?

I tried it all! I must’ve spent hundreds on stuff for my skin that didn’t really help.

For comfort, I took Dead Sea salt baths every night. They made life more bearable and enabled me to go to work the next day, because they softened my skin (which at times was really hard to move) and kept all the wounds clean. After the bath I used Epaderm moisturiser, which was the only one that wouldn’t aggravate my skin.

Incredible transformation!

Clothing wise, I found some soft cotton long sleeved tops and rotated them for sleeping in. I wore fingerless gloves when I was out and about and used old cotton t-shirts as scarves to comfort my neck. I wore light grey to work, as it wouldn’t show the flakes in the same way black does, or the cuts in the way white does.

I had a LOT of laundry during TSW, because you can’t wear something for long without feeling like your skin is all over it. I switched to a laundry liquid that wasn't as harsh as the mainstream supermarket brands.

I had an ice pack for my eyes in the morning, which helped me to open them when they were locked shut. Towards the end I also got acrylic nails, which really helped break the itch-scratch cycle for me, because I wasn’t able to do so much damage. I think this really accelerated my healing.

Medically, there were also a few things going on. I was on methotrexate and as I said, I am not sure whether that made my symptoms less severe. Other than that, Nizoral, which is an anti-fungal shampoo, really helped with my scalp.

I also saw a naturopath, which was an interesting experience, but in retrospect offered me help as a sort of talking therapy rather than anything more physical.

Lastly, I never truly let myself believe that TSW would take as long as it did for other people. While that might sound naïve, I think it helped me to remain positive and cling to as normal a life as possible.

4) Sum up TSW in five words.
Debilitating, unpredictable, isolating, grounding, freeing.

5) What positives, if any, have you found from going through TSW?
TSW is pretty awful when you’re going through it, but it’s so amazing because there is light at the end of the tunnel. Most people who suffer with chronic illness don’t have that chance of complete recovery. So we’re lucky in that sense.

I would say I am more empathetic now too. We genuinely don’t know what people are going through or why they are suffering – and it is not their fault if they are. I think I now have a better understanding of that.

My life is better now than before I went through TSW. I take better care of my body and I notice more when I don’t. I guess it taught me to really listen to what my body needs to function well, whether that be nutrition, the products I use or the environments I find myself in.

Most importantly, TSW brought me closer to the right people. The people who stick by you when your condition is largely unrecognised by the medical community, when your face is falling off, when you can’t look at yourself in the mirror – never mind look someone in the eye, when you’re passing on at least 50% of social events… Those people are the best. 

And the TSW online community is such a source of inspiration and courage, so it has been incredible to meet some of them in person as well as via social media. 

To follow Emma's fabulous Instagram account, click here.

Thank you so much Emma <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)
Brittany Hallberg (here)

Identity Theft

Taken 23rd May 2014, almost a year into withdrawal.

Over the course of my two-year withdrawal, I took well over 700 photographs. There are some where I'm covered in angry red wounds, some that show just how swollen my face was, and pictures where a golden crust had settled on my skin from the weeping. And yet it is this photo which upsets me the most. I'm not weeping in it, my skin isn't as red as it once was, and most of the swelling had already gone down. But in this photo, I can see me again.

In the photos where I'm so obviously suffering, yes, the symptoms are shocking, but as I look so different, I'm almost able to pretend it's someone else – it's less personal, with the symptoms so much more than the person. In this photo, however, I couldn't hide under swollen skin and was instead offered a glimpse of the old me and a fear that this was the new me. This photo is so much more than my appearance. It is a total loss of identity.

Don't get me wrong, the sleepless nights that come with the weeping and irritation are terrible, but in my opinion, it is the stagnant stage of withdrawal that proved to be the most difficult. We start to see us again, and yet we are still so far from what we once were, a thick layer of elephant skin distorting the old like a mirror at a funfair.

From L to R: Before TSW. During TSW. After TSW.

It was at this stage where I would look at old pictures of myself, pre-TSW, and mourn the woman in the photographs, not able to imagine ever being that person again, whilst conveniently forgetting exactly what those pictures are – thinning skin hidden under thick foundation and topical steroids masking the real symptoms.

As a woman, you want to put on make-up and wear pretty dresses, but in reality, the thought of anything on your skin is unbearable. Through TSW, you feel unattractive, laid bare – I was no longer a woman and just some tired human endlessly suffering, the girl in the old photographs long gone. But I was right because you are never going to be that person again. You are going to be something better, and this time it is all yours.

What you need to remember is that you don't lose your identity through withdrawal, but find yourself, and besides, your old self was never yours to begin with. Topical steroids created a lie, and the truth is that it's going to take some time to get there, but get there you will, and you won't need anything to maintain it because it will simply be you. The new you. The real you.

I am going to end this by telling you something important: the stagnant stage is just another part of withdrawal.

Now is not forever.

Withdrawal is temporary.

Love,
The new me x

5 QUESTIONS WITH: Brittany Hallberg

Today marks the return of an old favourite for me with a brand new series of 5 QUESTIONS WITH! I loved working on these posts so I'm beyond excited to be able to bring them back for you all, and I am kicking them off with the beautiful Brittany Hallberg from the Instagram account Health & Heart (here). I have been following Brittany's journey through TSW since 2017 and earlier this year I was over the moon when a photo popped up on my feed showing that she was doing so well. She looks absolutely amazing and is such a positive influence within our community and if you are suffering, I couldn't recommend her account more. I'll hand it over to Brittany:

Brittany during withdrawal.

1) Tell us a little bit about yourself and your skin journey.
My name is Brittany and I am 27 years old.  I grew up in the United States and am currently residing in Virginia with my wonderful husband and daughter. I have had mild eczema since I was a baby (mainly on my arms and behind my knees), but my mom was always very wary of steroids so I never actually used them until high school, which is where my life started to take a turn for the worst. I started with mild steroid creams which I would use here and there. Then over the course of 10 years, my eczema started to worsen, spread, and burn. I also started becoming very allergic to everything in the environment and had chronic hives all the time. I knew that I had to find an answer, so of course the doctors recommended stronger steroids and even rounds of oral prednisone. I would leave the doctors feeling hopeful, thinking that a stronger steroid would fix my problems. I even went on allergy shots to try and reverse my environmental allergies. One day after receiving my allergy shot my organs started shutting down, my blood pressure was through the roof and my heart was beating out of control. I ended up in the emergency room for 3 days and the doctors could not figure out what was wrong so they kept pumping me with strong steroids. This event occurred over and over for a matter of 3 months. We went to over 40 doctors, traveled to the Mayo Clinic to run every test in the book, and yet every answer that I would get regarding my health was "I'm so sorry, I have no idea why your body is acting this way". I was terrified, feeling like death was just around the bend. Finally, a homeopathic doctor explained to me how steroids have such a huge effect on your adrenal glands and that I needed a year of rest to heal all of the trauma from the oral steroids and allergy shots. However, at the time I was still using the steroid creams because I thought "it's just a cream, it's fine".  Then *surprise* I got pregnant with my first child and I decided to stop all medicines for the sake of my child. I ditched the steroid creams and that's when the dreaded TSW began (as if I hadn't been through enough already....sigh....). I started my TSW journey in April of 2017 and have not touched steroids or immunosuppressants since. Going through TSW and pregnancy at the same time was incredibly traumatizing but the pregnancy is what kept me going, knowing that I had to do this for my family. The first year was a nightmare, with many setbacks and tears. I had to quit my job, practically lived in the bath tub, and had a full time care taker because my hands were so compromised. When I delivered my baby things started moving forward, and after the first year life slowwwwwly started getting better. I am now over 2 years tsw and can function normally and enjoy spending time with my family, traveling, and am very involved in my church. I still have a few areas that give me trouble but it is nothing like it used to be. This experience has taught me SO much and I am so thankful for the little things in life that we take for granted everyday

2) How did you find out about TSW?
I found out about TSW through a youtube video I saw online which then led me to ITSAN. When I read the symptoms I knew in my heart that that was the answer. Not going to lie, my first thought was "those people are hardcore, it can't be that bad being off of the steroids", and boy was I wrong. It was much worse then I could have imagined.  A short time later I found the TSW Facebook group and got connected to someone in my area that was already further along in the journey.

3) Did you find that anything aided your healing?

Brittany now!

TSW is so different for each person and every person will find relief in different ways. For me, I feel like I've tried it all. In the beginning the bath was the only thing that would comfort and calm me down (which I do think it is better to dry the skin out if possible but for me I just could not do it at the time). During pregnancy I was not able to use a lot of medicine but I did find vicopaste bandages, tubigrip bandages, benedryl, zinc, and dss baths to be a lifesaver for me.  After pregnancy ibuprofen helped a lot if I was very oozy and inflamed and then I also went on an herb treatment that was very helpful. I've tried many diets and supplements but have not found much of a difference that route. About 18 months in I went on low dose naltrexone (which boosts your endorphins) and that was a game changer for me! For infections I would use tee tree oil and also high dose vitamin C. I also tested positive for the MTHFR gene mutation in which my body does not detox very well so I have also made changes in that area to help support my body in getting rid of toxins. Overall the main healer has been time, but all of these items aided in giving me relief and hope in the process.

4) Sum up TSW in five words.
Perseverance, life-changing, TIME, hope, healing.

5) What positives, if any, have you found from going through TSW?
This process has been extremely tough and traumatizing, yet I am extremely thankful for all that I have learned in the process. I find myself more confident in who I am, not as worried about my outward appearance, and more focused on what's inside. I have also met so many amazing friends who I will cherish for the rest of my life. This experience has motivated me to make healthier lifestyle changes, do more research, and spread awareness to people who are not aware of the dangers of steroids.

To follow Britt's TSW Instagram account, click here and for her fabulous health and wellness account, click here.

Thank you so much Brittany <3

Links to my previous 5 QUESTIONS WITH:
Henni @rawsomesoul (here)
Alice @healthy_healer (here)
Maleeha @TSWHealed (here)
Nina Sloan (here)
Nick @Eczemacism (here)
Stephanie & Isaiah Quinn (here)
Stephanie @TheItchyConundrum (here)
Josh @Redskinrecoverydiary (here)
Briana @PREVENTABLE (here)
Melanie Lynch (here)
Stephanie Miller (here)
Holly Dillon @GetYourSkinOut (here)
Me (here)
Keisha Gregson (here)
Douglas Maddy & Charlie (here)
Gillian Breslin (here)
Jasmine and Jennifer (here)
Robyn (here)