The past 10ish days have been tough. Writing this post, will inevitably be tough. Having to take strong medication to suppress my immune system every day, is something I never thought would be a part of my daily routine. You might be questioning, why am I writing about a health problem, on my Fashion and Lifestyle blog? but, the truth is, this is a part of my life, and a massive part at that. I find something so comforting in the fact that people are so passionate about writing about mental health on the internet now a days, however, I find it quite rare to come across people talking about physical health problems. I mean, at the end of the day, nobody wants to admit they have any kind of problem, or flaunt that their lives are anything other than perfect on social media. However, I'm hoping by sharing my experiences and the way I feel, will help people understand and/or relate to me, and why I seem to deteriorate in the way I do from time to time.
Around two years ago now, I was hospitalised for my atopic dermatitis. Hospitalised? for eczema? Thats what I thought when I was lying head to toe in bandages for 3 months, barely able to move.
As a quick run down, I suffered from eczema from birth - to around 3 years old. After that I have no memory of ever having eczema, until it all began in 2010, when I remember having to borrow some of my ex's mum's aqueous cream for a persistent irritation in the creases of my arms. Fast forward over the course of 5/6 years, I was introduced to cream after cream, steroid after steroid, until I got to the point where I was head to toe (and I mean head to toe), in aggressive, stubborn, skin rashes. 2015 enough was enough. I was slathering all these toxic potions and lotions all over me every. single. day, that seemed to make my skin ok for a day or two, but in the long run were making me worse as apposed to better. I decided to stop the steroids. (You can read about other people who do this for a hope of relief, here) Three months after stopping steroids, my body became in, what I can only describe as, 'melt down mode' and I was hospitalised for a week to get rid of any infections and start a course of strong Immuno Suppressant drugs.
PHYSICALLY
To my knowledge, my immune system doesn't work properly, and the way in which it effects me, is my skin. I don't just mean a small patch on the backs of my knees or the creases of my elbows. I mean everywhere. My neck, shoulders, forearms, arm pit creases, back, torso, bum, hips, thighs, legs, knees - everywhere. Some days, I can cry while putting on leggings, or trying to paint my toe nails, because my entire thigh/backs of my knees are so inflamed, the only comfortable way to be, is led in bed. Some days I have to lie in bed in a certain position, and can't even bring my phone to my face because it stings every inch of my arms/shoulders too much to do so. When my skin is bad, I feel suffocated in my own body, sometimes even the air can hurt me, and I can merely just stare at the patterns in the ceiling to distract myself from the sting/itch/burn that my body seems to create for a reason unknown to myself, (and what feels like most consultants/doctors). The skin is the biggest organ your body maintains, and mines dysfunctional and constantly attacking itself. This means I'm pretty exhausted every day, I usually take a 2 hour nap after work, followed by an 8-10 hour sleep over night. Sometimes my neck will be so flared I can't drive, because I can't move to maneuver or see across junctions etc. I sometimes itch so deeply, it feels as though a thousand insects and wasps are under my skin and sometimes when I shower, the water on my skin can feel like acid, and even when I put clothes on, I can feel the fibres irritating me almost immediately.
MENTALLY
Perhaps now, more than ever, my condition has a huge effect on my mental health. I have had bouts of carefree skin in the past 2 years. My medication has worked perfectly and for some reason my skin has decided to give me a break for up to 6 months at a time. However, this is what makes the relapse even worse. I know what it feels like to have good skin. I know how it feels, to be able to go out all the time, socialize every night, eat and drink what I want, and work full time, without feeling exhausted and run down. Whenever my skin is bad, I feel my entire being/soul/existence leaves my body. I'm not me anymore. The me when my skin is bad is a weak, lonely, suicidal, distant, angry, and so deeply sad. I feel as though I will never be normal, or like my peers, or able to enjoy/fore fill a normal life. I am a very ambitious, striving and determined little person, but when my illness strikes in the way it does I feel insignificant and hopeless. Getting showered and dressed every day is a challenge in itself. I have to make sure the shower is the right temperature, brace myself for the sting, make sure that the towel is clean, that I have enough of my cleanser to wash with, that I have the right makeup to cover up my red face/neck, that I have clean, light, cotton clothes to wear and I have enough time before I leave the house, to allow my skin to cool down and to be a little less red. This routine is as exhausting as it sounds. Mentally and physically. Watching my friends and family whack on their shorts on a summers day or a strappy backless top on a night out, silently frustrates me no end. Why can't I do that? Why do I always have to cover up, wear long sleeves and trousers so nobodies distracted by my sometimes shockingly pink skin. Sometimes I feel as though watching the world go by from my bed, is the only way I'll ever be. I'm always going to suffer and I'm never going to find a solution. Its super hard when friends/family/past boyfriends are constantly telling me, 'just don't think about it and carry on with life', which for the most part, I try my damn hardest to do so, however, tell me, if you had fallen in stinging nettles - naked, got sunburnt, and then had ants crawling all over you, you could forget about it? because realistically, thats how I can describe it feeling.
EMOTIONALLY
Draining. I'm pretty sure thats the only word that could fit along side 'emotionally', when it comes to my condition. Its hard having to let down friends, colleagues, family, and myself, on what feels like a constant basis. Especially when its not something like the flu or a bad stomach, something relatable that people can understand. I don't want to have to miss out on friends birthdays, I don't want to turn down going out to lunch or meeting up, and I don't want to have to reduce my hours at work - which is why I usually push myself to my very last legs. I've turned up to work, nights out, dates, to meet friends, take the dog out etc, with puffy eyes, a deeply sore and red neck (somewhere that often shows), and a body thats covered in ugly eczema, for months on end now. Pushing and pushing to force myself into a normal lifestyle. I cry every single day when I've reached my limit. I feel like I'm at a battle with myself, as well as the world around me. It truly, 101%, sucks. I know there are worse things in the world, and as a sensitive person I have a very heavy heart, which lands me finding world trauma's/events very overwhelming as well! However, when I feel so hopeless, theres nothing I can do but feel deeply sad at the predicament I find myself in.
THANK GOD FOR GOOD SUPPORT
I'm so super lucky in the respect that I have an amazing doctor, help on hand at home, an amazing boss at work and thoughtful friends, they just seem to have the best responses when I'm having such a shitty time. It amazes me how many offers I get for people to come and visit me, or buy me presents or flowers to cheer me up. (You're all so special to me!! It's true).
At the moment I'm in a place where I feel pretty anxious to participate in normal activity's, like go outside, see my friends, go to social events, or even shower most days incase of it triggering a flare.
This week I go back to my dermatologist for the second time in 5 days, to find out results of blood tests and to potentially change my medication to get me back on track. I'm also putting loads of my brain power into my blog at the moment to keep me focused/busy. I do have hope, although its been the hardest thing to feel these past few months. 'Hope'. I didn't write this post for any attention, and I'm sorry if this was difficult or a bit (very) depressing for your Sunday evening read, but I just wanted to get my voice heard at a time where I feel very isolated and alone with my condition. If you do have any questions or want to talk to me about anything I've talked about, do pop me a message!
madeleiinegraceblogs@gmail.com,
Heres to a more cheery blog post next time around!
Thanks for reading as always,
Madi x
