Dealing with the depression that comes with TSW

I decided my second post should be about something most sufferers of TSW are going through: Depression. And right up front I’m going to share a secret with you — I burst into tears for no apparent reason when I was home alone today. It was just the second time in 4.5 months of TSW that I’ve shed a tear, and the first time was just a couple of weeks ago because my wife was unhappy and it made me feel more helpless and useless than I ever had in my life. I guess you could say I’m in a fragile emotional state!

I’ve always thought of myself as a mentally strong person. I’m generally optimistic and don’t complain much — I guess you could say I tend to just take things as they come and roll with the punches. Contracting a mental illness was never something that even crossed my mind, and frankly there was probably some part of me deep down inside that felt I would be above depression because I was so “strong”.

Even when I was working as a corporate lawyer and absolutely hated my job — I resented getting up every morning because I had to go to work, and feared going to sleep at night because I knew I had work the next day — I still didn’t feel particularly depressed. Instead, some of my colleagues and I even joked about depression in the profession on a regular basis, and when dickhead lawyers made their depression public we would harbour some scepticism, suspecting that it was being used as some kind of “get out of jail free” card for underperforming or bullying others.

I look back on that now and feel ashamed. I don’t want to make it sound like I didn’t take depression seriously because I did when people I knew and cared about said they were suffering from it — the shame stems more from the fact that I didn’t take it serious for myself. I thought it was something I would never have to worry about. Perhaps, if things really do happen for a reason, this is one of the reasons why I am currently going through TSW right now.

If you think about it, it’s quite hard not to be depressed during TSW. I’m not a particularly vain person, but for months I haven’t had the courage to look people in the eye when I speak to them. This was even before my entire face just about melted off in recent weeks. I used to take a quick look at myself whenever I passed a mirror, and now I loathe and fear seeing any reflective surface. The redness, the swelling, the elephant skin that makes you look at least 10 years older. I don’t even recognise myself anymore.

On top of the hideous outward appearance there’s the constant flaking and oozing. Even if others don’t see it (because you don’t go out), you see it yourself and you end up disgusting yourself. Every time I stand up from a chair after sitting on it for a while I have to look at all the white flakes and powder I’ve accumulated there. I don’t ooze much, fortunately, but I do get it at night around my ears, and that crusty build-up makes me sick. Sometimes I’m sure it (or I) smells pretty bad too.

And then there’s of course the itch, that debilitating itch that won’t go away. There’s the pain from the raw, damaged, broken skin. And there’s the nerve pain on top of that. It’s constant, 24/7. You can’t just unzip your body and step out of it, not even for a nanosecond of relief.

Should I go on? What about the insomnia? In the first couple of months it was “just” waking up for two to three hours every night before falling back asleep. Then, probably because of the anxiety of not being able to sleep, it got worse, to the point where I’m lucky to get a couple of hours of sleep before 7am in the morning every day, and then I’d crash until 11 or 12, if my schedule permits. It doesn’t matter when I sleep at night. I just can’t stay asleep no matter what. I usually try to get up in the middle of the night so I don’t waste the entire night away, just lying there scratching myself raw. But then there’s the anxiety of making yourself too awake to fall back asleep again. I’m always second-guessing myself every night.

Just the above symptoms should be enough to make anyone depressed. I don’t go out anymore and haven’t been out of the house for an entire month, save for trips to the doctors or to drive my kids to school when it’s raining. I do try to sneak in a movie every now and then as my stress relief, and I’m lucky that I have a cinema right across the road. When I leave the house now I wear a flu mask, a baseball cap pulled way down, and a hoodie to cover the sides of my face. You can only see my eyes, but even then you could probably see the flakes and swelling on my eyelids.

I love my wife and kids to death and would do anything for them, but sometimes I wish I could just be completely alone with no one around me. I loathe being in my own skin so much that I wish they didn’t have to see me suffer like this. And I get so impatient so easily that it doesn’t take much for me to snap at them — and I hate myself whenever I do. Even playing with my kids for five minutes every night is exhausting. My wife has been my pillar of support through all this and taken on as much as she can — cooking, cleaning and looking after the kids — but she has her limits. On the rare occasion when she vents a little from being too stretched or stressed out, it makes me feel so anxious and sad. I can’t help but feel resentful because her suffering is nothing compared to mine, but that’s the thing — no one can feel the depths of the suffering that TSW brings except for the one going through it. TSW is such a lonely experience that draws you deeper and deeper into the abyss of isolation and depression. The worst is when you think you’re finally on the mend and then suffer a major setback (happened to me at least a couple of times). I’ve never had suicidal thoughts but I can totally understand if people do.

That said, I am glad for the small amounts of human interaction that I do have. I’m appreciative that life for those around me, though harder, can still largely go on without me. I’m actually happy that, as the only breadwinner of the family, I have to work most days, because the amount of focus I need helps take my mind off the suffering for a while and allows me to be alone. I’m thankful that we have so many books, movies and TV shows at our disposal. I’m fortunate to have a few close friends I can talk to about our problems or just chat about anything o take my mind off the pain. I’m relieved that our family is financially sound enough to get through this difficult process.

Ultimately, that’s what it comes down to when dealing with the depression that comes with TSW — counting your blessings. Take it one day at a time. Make the most of it when you have good days, and know that you will have good days again when you have a bad day, and especially when you have had several bad days in a row. And most importantly, know that there is a light at the end of the tunnel. You don’t know how long the tunnel is, but know that the light is there. Knowing that I will get through this one day is getting me through. Knowing that the suffering will eventually pass is getting me through. Heck, even writing this blog is getting me through.

So I urge everyone enduring TSW to not try and go at it alone. Talk about it. Write about it. It’ll make you feel better. The Facebook support groups I have joined (check out the resources page) have been a real life saver. Seeing the success stories and the words of encouragement gives me energy and renewed hope every time. I long for the day that I can experience what many of those who have fully healed have experienced — the feeling that TSW was just a nightmare you once had a long, long time ago.

Charting my Topical Steroid Withdrawal journey

I am typing this very first blog post in the middle of the night while my wife and two young boys are asleep. I haven’t had a good night’s sleep or slept through the night since I officially embarked on the topical steroid withdrawal (TSW) journey on November 15, 2016. My entire face and neck is covered in thick, dead skin, and it’s gradually flaking off, piece by piece. I can’t move my face without feeling the uncomfortable tightness, and I can’t move my neck without feeling pain.My ears are caked in a mix of dried lymphatic fluid and blood. The back of my neck and my joint areas (back of elbows and knees) break out in sweat every night and as a result the skin on those areas remain extremely raw. The rest of my body is still struck by constant bouts of rather intense itching, and on top of that I have stinging nerve pain across my arms and chest.

Yes, TSW is a living hell. I’ve said it many times, and I’m sure 99.99% of people who have ever gone through TSW will tell you: It’s the hardest thing I’ve ever done.

I started the TSW journey full of optimism, believing, like many others before me, that I would be the one to buck the trend and recover in record time. But now I’m 4.5 months in, and the end is nowhere near in sight. I knew it was going to be hard, but never in my worst nightmares could I imagine this torture.

My body will heal when it’s ready to heal. My mind, on the other hand, needs help. As agonizing as TSW is on the body, its damage on the mind is arguably just as bad, if not worse. This is where this blog comes in. I started a “whine diary” a few nights ago on the advice of my wife and a traditional Chinese medicine (TCM) doctor I had been seeing for acupuncture. Stress and anxiety is a big part of TSW, and writing down grievances is supposed to assist in that regard. I have now decided to take it a step further and create this blog to chart my journey through TSW. I don’t profess to be an expert, but I do think there is value in sharing my experience with others who are either going through the same ordeal or thinking about doing the same thing.

Starting from today, I hope to be able to do regular posts on this blog, not just about how I am progressing but on different topics related to TSW, which stems from topical steroid addiction (TSA) and is otherwise known as Red Skin Syndrome (RSS). I’ve got literally a couple of dozen topics lined up already, from taking supplements and TCM to meditation, taking salt baths, and other methods to alleviate discomfort and/or speed up the healing process. It is my sincere wish to be able to look back on this blog in the not-too-distant future and feel proud of myself for defeating TSA and becoming not just a healthier person, but a better person.