Wednesday, 24 December 2014

One Week off Topical Steroids

It has been one whole week since I stopped using topical steroids. And what a week it has been.

On my first day, the symptoms were mild and localised to my face. Since then, the symptoms have gotten worse with each passing day and have spread down my neck and onto my chest, shoulders and upper back.

Me on day 1 vs day 7.
I have experienced a number of unpleasant symptoms so far.

Firstly, red, hot and swollen skin that burns. It feels similar to really bad sunburn. The only relief from this comes from ice packs, ice packs, and more ice packs. Seriously. I need to have ice packs on my face all day long. For me this is probably the most debilitating symptom so far because it is so painful and also I can't really do anything when I constantly have to hold an ice pack against my face.

I love my ice packs.

Secondly, my skin has had moments of being crazy itchy. Many people call this a 'bone-deep' itch due to the feeling that it originates deep beneath the skin, and it is nearly impossible to alleviate, especially without causing a lot of damage to the skin. It is nearly impossible to describe the intensity of this itch. I had these itch-attacks for a few hours a day for the first few days of my withdrawal. Since then it has been more of a less-intense but constant itch.

I have also been enduring skin that is so tight that I can't always move my face or turn my head, and that is constantly flaking and shedding.

One of the most nauseating symptoms I have been dealing with is (for lack of a better word) crusting and swollen eyes and ears, and a scaly and flaking scalp. In the mornings I wake up and find my eyelids more or less 'glued' together which is truly heinous and I have to prise them apart before I can open my eyes. Also my ears are constantly cracked, crusty and weeping no matter what I do. My ears and scalp gross me out so much that I've taken to covering them up with a headscarf, trying not to think about them too much and praying that these symptoms won't last too long.

Another big problem for me is sleep. I tend to get an hour or so at a time throughout the night, and a few consecutive hours spent sleeping of a morning, while spending most of the night in a half-asleep state. This is especially bad mostly because this zombie version of myself isn't able to stop herself from scratching so I can do quite a bit of damage to my skin by scratching at night.

So what have I been doing to cope?

Mostly I've just been trying to keep busy, I've been making Christmas presents and just trying to be as active around the house as possible, even if it's only by wandering back and forth around the house. I try to move around a bit as I'm convinced that this helps my facial swelling go down.

I've also been keeping my diet as healthy as possible, taking supplements of cod liver oil, evening primrose oil, vitamin D, and probiotics.

I have also been taking bentonite clay internally. Bentonite clay is a swelling clay that is supposed to be great for detoxifying and healing and I plan to take bentonite clay baths also.

I'm being looked after very well by my boyfriend and family. Spending the day around people also tends to distract me from the pain and make the day go by faster.

So far the worst part of this experience is waking up of a morning, face swollen and sore like I've been punched in the face, not being able to open my eyes and surrounded by dead skin.  

However a positive about this week is that I have found a doctor who knows about topical steroid withdrawal and is going to monitor me while I go through the withdrawal process. This is amazing as it is hard to get support from a lot of doctors as most don't even believe red skin syndrome is a real condition. 

Anyway, it's Christmas Day tomorrow, here's hoping I'll be able to enjoy it.

Merry Christmas everybody!

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