Rotting (ruminations in the middle of a flare up)
My skin is rotting. At least, that’s what it feels like. And it smells weird, which is just unbelievably gross and is most likely the result of applying ointment on it every 30 minutes.
I am at my wit’s end today. I am just so fed up. I had therapy this morning, which started with me declaring that my skin was really angry. It was an unusually early session at 8 am, and my skin is always it’s worst in the mornings, after 8+ hours of drying out.
My therapist then leapt on that notion of anger and we discussed it as a feeling, how I’ve never felt it a very useful one, as it only hurts the person who is feeling it. She encouraged me to view it differently, as a flag that something is wrong, unfair perhaps. She also said that feelings of anger need to be felt out, in some way. I think my problem is that I am not sure how exactly to process that.
I feel tangibly angry about my skin. I am angry that this has been going on for nearly three years now. I am angry that the strong medication I am on has not suppressed this flare up. I am angry that the NHS does not have the funding to give skin the proper investigation it needs to find out what’s causing issues. I am angry about the damage the steroids have done. I am angry that it takes up so much of my waking thought. I am angry to still be suffering.
I am sick of my camera roll being filled with pictures of my rashy, swollen face. I am sick of having to wear a hat every time I leave the house (this is due to my skin being too sensitive for the sun, but I probably would wear one anyway to hide). I am sick of having to flick dry skin off my shoulders every ten minutes. I am sick of feeling like a crusty beast. I am sick of looking like I am sunburnt. I am sick of swollen fingers. I am sick of bone deep itching. I am sick of my eyebrows falling out. I am sick of my eyes being swollen. I am sick of my skin burning to the point I have to lie down.
There is also the idea that my skin being the way that it is is a result of suppressed emotion, perhaps suppressed anger. (The Body Keeps the Score is haunting my bookshelf right now, I can’t bring myself to read it just yet).
I do love a silver lining, although I don’t always feel the need to find one when it comes to illness; as I wrote in my previous post, sometimes the shit is just shit. However, I have discussed with L that it’s funny that I tend to not be so good with sharing my negative emotions but I cannot keep a lid on my feelings about my skin. With chronic illness there is a fine balance between getting on and living your life and trying to not let it take take take from you, but also giving yourself grace and making reasonable adjustments for your disability. I am walking that line right now and trying to strike the balance. My skin issues have weirdly been good exposure therapy for me having to admit that I am struggling, because I can’t get away from the body I live in.
A lot of people tell me they wouldn’t have noticed if I hadn’t pointed it out and I can’t tell if that makes me feel better or worse. I am aware that no one is keeping track of the way I look as much as I am, but it sometimes also makes me feel dysmorphic, like I am imagining it as much worse than it is. I sometimes feel that the rash legitimises my complaints - you can see the result of the constant fizzing.
I wish I wasn’t so self conscious of how it looks. I wish I didn’t feel the need to cover up my face as much as I can. I am hyper aware of someone’s eyes resting on my face a second too long, as if they are registering that all my features are there, but something is not right. Off colour. I wish I wasn’t so vain that I wouldn’t look in the mirror and think that I would take the pain on the inside, if only it wouldn’t show on the outside. If there was a way of covering up the red and swollen rashes. My skin is bad on my arms and hands too, but I am usually focussed on my face and my neck. I can cover up the other parts easier.
I guess I am writing this as a form of therapy. I am trying to normalise my illness, to accept it, to expect it as part of my life right now. Flare ups are the peak - I do not expect my skin to look like this in two weeks time, but there is always the devil on my shoulder telling me it could always get worse. And it has been worse, way way worse. Infected all over my body type of worse, can’t leave bed type of worse. So I should be grateful we’re not back there, at least.
It’s also hard to normalise it when I know I shouldn’t be suffering in this way. I should be able to seek help, after all these years, for there to be a fix. But there is no cure for eczema.
I also have to continue living my life. I need to feel like I deserve a place in the outside world even when my skin is bad. I don’t think anyone is making me feel like that except myself.
This is a little more candid than I usually post publicly but I am seeing this as a another form of exposure therapy, of expressing my anger through writing on a public forum. I am not looking for sympathy, but perhaps writing this is a better way of explaining how I am feeling rather than just saying “my skin is bad today”. This is what I mean when I say that.
There are people that suffer with eczema way worse than I have it right now. It can be deathly debilitating and I have to hold onto the fact that I am still physically able to leave the house, even to write out this post. But I am feeling sorry for myself today and I think that’s ok.
Maybe the real silver lining is that the red makes my teeth look whiter ;-)
I have tried a lot for my skin over the past three years. I have tried elimination diets (gluten, dairy, sugar), hundreds of different creams, not showering for two weeks, various antihistamines, drinking only filtered water and hospital phototherapy treatment and am now on a strong immunosuppressant drug. I am still open to new suggestions if you have any, just please don’t recommend I try E45.
Because it wouldn’t be me without ending on a positive, here are some things that ARE going well…
I have started writing a novel
I just spent the weekend in Manchester with my best friend. We started reading The Wall by Marlen Haushofer together which I am really enjoying.
I made a new friend last week
(I do actually feel a bit better for writing this post, so there’s something).