A break in focus

I’m sorry to say that in the last few months, my health has been seemingly deteriorating once again. You may remember my posts on my dark night of the soul, where I described my tortuous skin condition, known as topical steroid withdrawal (TSW). I (perhaps a bit naively) believed that I had overcome it completely last summer, but unfortunately, that doesn’t seem to be the case.

A (second) dark night of the soul

In past months, my skin has been getting progressively redder, weaker, dryer, itchier, and more painful. I’ve started having a lot of trouble exercising and going about my daily business, but by far the worst side effect of this harrowing turn of events is the utter destruction of my sleep patterns.

I wake up every hour or two, due to some itch or painful sore or tear in my skin, and almost every night I wake up in a full blown scratching fiasco, and end up lying awake for hours due to the discomfort. It’s not something I would wish on my worst enemy (not sure I have one, luckily).

So as you can imagine, life has seemed pretty bleak recently. I’ve been resting a lot during Christmas holidays, thankfully I was able to finish all my school projects at the woodworking shop a few weeks earlier than expected, so I got a solid six weeks of time off. In a few days I’ll be starting school again, and although I love what I’m doing there, mostly carpentry and woodworking, I’m also feeling a bit apprehensive.

Fear of the unknown

This is because I’ve already dropped out of school once (from an awesome illustration course I wish I could have finished) due to this skin disease, and my worst fears these days pertain to my worries about having to drop out again. When I think about it, that seems quite unlikely, since I’m still feeling way better than when I was at my worst last year. Still, it’s hard to move away from those worries.

So this is my first post of the new year, and although it may seem a bit depressing, never fear!

I’m feeling more optimistic than often before about my future. It’s easy to fall into a deep funk when your health fails. It’s not without reason that in face of divorce, financial disaster, or your house burning down in a freak accident involving flying circus bears, that people say “Well, at least you’ve still got your health”.

Health is something that’s almost impossible to appreciate until it’s gone. Like youth, or food, or (I imagine) gravity, health is such a constant for many of us growing up that it hardly enters our minds that it might one day be lost. Serious illness is, we think, just something that happens to “other people”. Whoever they are.

Shattered ambitions

When I lost my health for the first time, it struck me so hard that I was flung into severe depression. It had become especially devastating around the eighteen month mark, when my symptoms finally started to (temporarily) improve. I then enjoyed a good few months of very mild symptoms, although I never felt fully healed.

During those few months I took a trip with my grandparents to the Canary Islands, went to Sicily to meet my dad, flew to Albania for an awesome holiday with my girlfriend, and walked the 800 kilometers of the Camino de Santiago. I’m infinitely grateful for that I had that break in symptoms, because honestly I’m not sure I would be here to write this if I hadn’t had that spark of hope that things might eventually improve.

Three years later

Well, here I am. It’s been three years since I first got sick, and it’s still going on. The estimated time that it takes topical steroid withdrawal to be fully completed is 2-5 years. That’s a LONG fucking time! So I may just be halfway through. Thankfully, the symptoms tend to taper down, getting milder and more manageable as time goes on. Still…

What I feel right now is a sense of empowerment. I’ve decided to focus my energy on my health. I’ve started a water fasting program, so I want to fast at least one day a week, with a few longer fasts in between. I’m just now finishing a 48 hour fast (looking forward to 7 pm!).

Redemption

I’m going to focus on raw foods a lot of the times, with monomeals, green juices and lots of fruit and vegetables, with some boiled eggs and fatty fish occasionally. I’m going to simplify my diet in order to give my digestion time to heal my body. The immune system is mostly located in the gut, and I believe that by detoxing my gut and improving my overall health, I may be able to cut off some of the time TSW takes, and hopefully make my life more bearable.

When it comes to my future goals, my ultimate goal is absolute health, physical and mental. Everything else, like school, although important, is ultimately peripheral to this goal.

This post has been mostly an expounding on my current condition and ambitions for finally regaining my health. I hope you got something out of reading this. We need to remember, when it comes to chronic illness, we are not alone! Reach out if you want to chat about this or anything else.

Until next time.

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