Its safe to say all the blogs I've read so far about Topical Steroid Withdrawal, weren't lying that I was about to enter some form of hell I have only just managed to handle. For the past month I have barely left the house, I've seen friends once - maybe twice, and even then they have come to my house in aid to make me feel better.
For the first week, I managed to tolerate my 4 hour shifts that happens just twice a week, all the while my face would sting, burn and itch under the bright lights - not to mention how self conscious I felt baring my bare/sore skin to the world while trying to sell shoes. Not okay. During the second week I went to the doctors to just let them know what I was about to endure myself in - considering people have been said to get swelling, infections and even hospitalised. I cried a lot at the doctors, as she told me to take my clothes off so she could see what was really going on. Bright red, raised, stinging skin - ALL over, like I'd been stung by a thousand wasps and then rubbed in stinging nettles. It was mental. My first flare that is - I cried all day, I couldn't quite believe how fast my body got angry at me for not using steroid cream. Its mad because I didn't use it all over, every day, some days it would just be a patch on my forehead, or on my lower leg. However, research shows that the skin acts as one single organ, therefore every inch of me by this point was crying out for the steroid drug. At this point I was signed off work for 2 weeks. I had some kind of hope that maybe this would all die down after a couple weeks. NOPE - I was wrong. I was back at the doctors at the beginning of week three, and sent away with a sick note for a month. Luckily my doctor was very understanding and was keen to know my progress over coming months.
So far progress has been random, and slow, and backwards, and great! but then backwards again. Some days I feel very positive and I want to spend time going for walks/drives with my mum, but other days - like the past 3/4, I just want to stay naked in my cotton dressing grown and just not move. ANYWAY, I feel like compared to some TSW sufferers I have had maybe a more gentle ride - so far anyway. I think this is because of the potency of the steroid I used - not MASSIVELY strong, but still prescription worthy - Betnovate, and I wasn't slathering it all over my body every day, some weeks in the past couple of years I wouldn't use any for months! Bizarre.
A bit of history - I have had Betnovate in my life for the past 5 years, for around 6-8 months I also used Fucibet which is an antibiotic steroid cream, around 3/4 years ago. I have also had one steroid injection in my life, around 3/4 years ago. I have also taken 1-2 months worth of oral steroids (oww), around 3/4 years ago. Its weird because my eczema has only really made a huge come back in the past year, before that I had a really really great year (2013) - I didn't really use much steroid cream at all. Maybe I only just got addicted to steroid cream in the past year?! I don't know anymore. ha!
SYMPTOMS SO FAR -
Week 1 - Slowly but surely flaring from my face, down my neck, to all over - especially worse in my armpits, neck, groin, stomach, back and inbetween my upper thighs (all the great areas, right? GUH)
Week 2 - In a lot of discomfort, itching a lot, still burning all over, flare still in full force, no longer able to wear underwear or any form of tight clothing. Sudden shocks of 'pin prick' like feelings shoot through my lower stomach/legs (this is bizarre as I'll be laid still and suddenly my leg will massively jolt - apparently its your blood vessels dilating/coming back to life?! pretty cool really I guess. Sleep pattern becoming really really messed up - most nights I wouldn't sleep till SEVEN AM, despite lying with my eyes shut the entire time.
Week 3 - SHEDDING EVERYWHERE - so so weird, despite moisturising at this point, I woke up one day with flakes all over me (ew), which I thought was amazing - automatically I thought this was my bad skin falling off - YAY, but I was kinda wrong I guess. Flare has gone down quite a bit. During week three I stopped moisturising as experts say it can speed up healing - kinda makes sense I guess as keeping your skin wet doesn't really help it heal when it comes to wounds etc - which is how I was treating my skin at this point. I have used olive oil on particularly stiff bits (back, shoulders, bum, top of legs) so I have a bit more mobility, but thats about it. Probably the most gross part of this process is the oozing, apparently your blood vessels also let out fluid as they're dilating (awesome), which gives the skin an awful sticky/wet feeling, as if you're constantly, awkwardly sweating in random patches of your body. I get it most around my entire ears (why), also round my neck (why), my groin creases and a little in my inner elbow, it also has a weird metallic smell - :(
Where I'm at now - come Friday (24th), I will be on Week 4, Day 28. I still shedd constantly, however when I scratch away the dead skin its usually red a sore underneath, so any flaky bits I just leave and leave until they go on their own. I also get chills whenever I change any form of temperature, so if I go into a slightly cold room, I will shake a lot, or a really hot room I will also shake a lot - I shake a lot in bed at night. This week I have finally started to sleep a little better, I've learnt how to ignore the itching/discomfort and how to handle my weird body temperature. I am also very lucky to have my mum give me reflexology on my feet most nights which really really helps me gain a normal sleep pattern.
Week 2 -
Week 3 -
At the moment at week 3.5, I'd say my skin is tight, dry, stingy, sensitive to touch, flakey, but also so so weak, If I'm to scratch an area such as my temple, neck, stomach or chest, the area in which I've scratched (not hard), instantly becomes red, raw and oozy. :( I'm managing this by psychological techniques - if I don't scratch, I'm allowing the skin underneath to heal. My ears, armpits, chest, groin area and parts of my face are all sticky/oozy at the moment, which sucks. It has an unpleasant smell, causes you to not put any product on it so it 'dries up' thus making me incredibly flaky/itchy, also its all around my friggin HEAD at night so its hard to sleep with a wet neck/ears. NOT ATTRACTIVE HUH. After reading other blogs, I'm actually really frightened about whats to come. Will it get any worse? Will it get better, and then worse? I just don't know.
At the moment I'm trying my best to keep a positive attitude, along with hope - a hell of a lot of hope. I know at one point in my life I could go swimming, use perfume, wash in soaps, eat and drink what I wanted without it effecting my skin - I sometimes can remember how it feels to shower and get straight into bed, naked, and feel comfy and cosy - without having to slather myself in oil or feel like I'm a statue trying to move.
Here are some things I've tried so far to manage the pain/discomfort/irritation, and of course to keep a positive mind:
Eating right and drinking right! I've read a few blogs/seen a few videos where people have said diet hasn't helped their progress, however the quickest healer I have come across (within 4.5 months), had strict wheat, dairy, and refined sugar FREE diet. I think this just makes total sense, what you put in, must come out. Quite literally, ever heard the phrase 'you are what you eat?' - That just sums it up I guess. Yesterday I cried very loudly, and very dramatically to my mum as I was having such an unmanageable day - my friends had asked me for a walk along the water front (not to mention people wanting me to meet/come out for the weekend - neither of which I can do right now. Depressing. As. Fuck. Excuse my language ha), but yeah, I cried to her and she asked me if I'd like it if she made me a nice Salmon dinner, and I weeped into her shoulder blubbering 'I WANT PIZZA, AND I WANT CHIPS, AND I WANT A TOFFEE APPLE CIDER IN THE SUN WITH MY FRIENDS' - Man, I could just cry thinking about that moment now. Just like any other person, I love shit food - I mean I do love healthy food more, you feel great and accomplished after a healthy meal - and I like that. However after 3 weeks of the most bland foods, I was desperate. ANYWAY, after nearly a month I am proud to say I've broken none of my food rules. I've eaten no wheat, dairy or anything with additives in. Go me. I mainly eat plain chicken, salmon, tuna, unbattered cod and other oil fish, along with a SHIT tonne of wheat free pasta/spaghetti and vegetables. I season my food with Tumeric - a natural medicine, Himilayan salt - another natural medicine, and sometimes I glaze the Salmon in Manuka honey - another natural medicine! I try and eat a lot of Avacado and Sweet potato as they are high in good fats. When I compare my diet from say, 3 months ago till now - I ate SO much processed foods, sweets, crisps, packeted sandwiches, soo much sugar and shit. I think the diet is working slightly, I don't get INSANELY itchy anymore and my skin is more dry/sore than patches of eczema like it once was. I do give myself naughty treats however, I found myself a dairy free easter egg in the shops a couple weeks back so ate it over a few days, along with a tasty pudding snack I created from pears, soya yoghurt with coconut (MMM), and gluten free musli. I'm also taking Vitamin E, Vitamin D, and Omega 3 supplements daily, and I drink at least 2l of water and herbal teas each day.
Home comforts, I think its incredibly important to have clean surroundings, fresh bedding, fresh clothing each day, a pleasant smelling living area, etc while going through this process. I spend most days when I'm at my wits end with boredom tidying and vacuuming my room to make me feel more clean and fresh. I'm using olive oil on my skin at the moment, which is providing to be okay - my mum got me this bottle which I really love the look of, I think it I had a massive bottle with 'COOKING OLIVE OIL' written all over it I'd feel a bit sad. Dunno if that makes sense to anyone else.. aesthetic is important okay! haha. Sleep is such an awful curse when it comes to going through TSW, you need to sleep for your body to heal, but for some reason at night, I get so fidgety, itchy, hot, then cold, then hot, then wet around my neck. Oh god its awful some nights. I try and have an anti histamine, Camomile tea and my mum do my feet (thanks mama bear), to help me before the hours of rest!
GOOD SUPPORT -
I'm so lucky to say I have some really great friends and family around me at the moment. In past months a lot of attention has been on other family members, I've been keeping my head down working on all my uni work, absolutely exhausting myself with keeping up with working, commuting to Cardiff, trying to maintain a failing relationship - but now, its almost 'my turn' to be unwell, collapse in a heap, cry, have a mini break down - all of those things. I'm just excited to get this huge resting period of my life out of the way, I know there is light at the end of the tunnel, its just hard not knowing how long the tunnel is. I think its important to sit back and re-evaluate things in your life sometimes - eliminate the toxin's from your life - whether it be food, or people. I feel a hell of a lot better for finally realising who is important in my life, and who truly cares for my wellbeing. (Thanks guys, you know who you are <3)
Anywho, this has been quite a long one. I'm really hoping that I am better for my graduation in July, and the coming months that will complete my degree. Again if anyone has any questions on my healing journey so far or has any advice do let me know.