Wednesday, 13 January 2016

CICLOSPORIN UPDATE || 13.01.16

Wait... what? How the hell have I not posted or updated this blog in almost 6 months.. oopsy.

I've been putting this post off for ages and ages, if I'm honest. I've gained a lot of new people in my life the past 16ish weeks, that have no idea about my 'skin troubles' and have only known me as the clear faced, mostly 'done up', make-up artist, that I have now become. I know its going to be really daunting for me to post this on any social platform, knowing that people will more than likely scroll to my previous posts and gasp in horror. However, for informative and medical reasons, I'm going to update my readers? myself? I dunno, I feel its good for me to reflect on things I've achieved and also the little dips I've had while on my medication.

Since being on my lower dose of 75mg, things have been very up and down. Well, I say very up and down, I mean I've still managed to keep a job, get up in the mornings and put clothes on, but I've had a few potentially worrying moments I guess.

Saying that, I have also had some really great times..

001.


Enjoying the remainder sunshine we had left for the last bit of Summer was lovely, sounds stupid, but being able to shave my legs and feel the warm wind run over me freely with no pain, and the sunshine warm my skin for the first time in over 6 months, was 'incred'.

002.



I got to bikini shop, pack a suitcase, and gain a ever so slight, nearly there, golden (mainly freckled), tan ;) Me and Craig jetted off to Egypt for a week in October as a last minute, completely impulse, get away (literally booked 2 weeks prior), and the weather was B-E-Autiful. It was SO. NICE. to have the sun on my skin.

Obviously it was important for me to talk with my doctor before I went, I wanted to talk about if I was to do anything special while in a foreign country etc, I was literally just advised the norm - Shade during mid day, plenty of water, and a hat. Same old same old with me (ginger probs).

When we arrived the heat hit us both like a welcoming but almost alarming hug. On the second day of our holiday the back of my legs, and shoulder blades flared quite badly - swelling and oozing was suddenly back, and I was miles and miles away from my dermatologist, not to mention with a boy I barely knew at the time. It was frightening, however Craig did his best to keep me calm and help me ignore it. He also suggested swapping my thick, white, 'sensitive', (expensive), suncream, to his thinner oil (with the logic that it'll allow my skin to breath a little more, and not clog up the pores) - you can imagine my reaction, right? WHAT, you want me to put on a PERFUMED OIL on my skin.... but honestly, it was what changed my holiday from a disappointment, to jumping around in the sea again and filming each other doing slow mo jumps into the pool. (We also had to buy another bottle seeing as I then stole all of Craigs sun protection, soz pal)

003.


I've got drunk a lot... probably too much. When I first started my meds I was really really cautious to what I was drinking, how drunk I was getting and maintaining a good hydration level throughout my night out. However, I have gone a little haywire since 'getting away with it' for the past 3-4 months. As you will see in following pictures, my skin has suffered a little recently, and I do blame it on stress, diet, and alcohol.. I've quietly made it one of my New Years revolutions to stop binging on alcohol so much, my logic is that my skin will have a funny five minutes whether I have one glass of wine, or 5 double vodka lemonades, so when the opportunity of nights out popped up, I'd jump. Time to slow down and have some cosy weekends in... *heres to the beginning of gettings old*

004.


Hilariously, and ironically, to my dermatologists surprise, I went for a job interview back in October that I have strived towards since the beginning of my final year at uni. After working on photoshoots, building up my collection of makeup, and becoming more and more comfortable with touching peoples faces - I decided to apply to one of the biggest and most well known makeup brands in the world. And I got it. I'm currently on a journey which equally scares me and excites me, who knows what the future holds with my skin, but for now I'm trying hard to suck in as much knowledge and information as I possibly can about the beauty industry and the minefield that is what product/tool does what, in a professional way.

005.


My medication has also allowed me to build relationships with people, visit new places and look towards the future in a more positive light. (The pictures above are from when Craig took me away for 4 days, to a cosy little apartment type senario in Cornwall - where we crabbed, walked and ate loads of pasties, and a photo of our first little christmas tree together. (And me being a little merry on Christmas eve)

Now I've touched on the positive, I just want to mention a few of the negatives I've experienced since going from 200mg per day to 150mg per day.


I know, this is NOTHING, compared to what my skin once was. However these were the first flares I experienced for a while on my face. During this time I was going through some trouble at home and stayed with my dad for a couple months, I hated my job (a phone shop - not really me, need I explain?), and I was just generally pretty exhausted from not having many days to ~chill~.


From around the end of November to now, my skin has kind of taken a little turn for the worst. Looking back my skin has always, ALWAYS been worse in winter. It seems my body doesn't really like wearing layers and layers of clothes and itchy jumpers, (as much as I love them, they also make me feel sick). My skin is clear, except the creases of my arms occasionally flaring, the skin around my armpits, and the back of my legs. I'm not going to lie, I have been pretty uncomfortable as of late, my skin has dried up a lot, I become a lot more itchy at night (central heating maybe?), and I've found it pretty on and off with sleeping/waking myself up itching. This months been quite testing for me, without a shadow of a doubt when my skin was like this before, I would be slapping my steroid cream on it just to make it go away for a few hours. However obviously, this is a thing of the past.

                              ***************** GROSS PHOTOS SOZ ********************


So as an experiment, a stupid, regretful experiment. I decided to put my bandages on one night before I had work, my leg was really getting to me and I couldn't STOP itching/scratching it, so I put my old viscopaste bandages on for the night in hope for some relief. Man on man was this a mistake, I woke up the next morning to not just the crease of my leg being inflamed, but the entire section from where I had the bandage! It seemed like I'd had an allergic reaction to the bandage in the night, which resulted in a slight panic, a little cry, and a few flappy moments before having to catch my train for work the next morning.

As you can imagine, the time between now and my last post has been strange, I've been really good, then really down again, when something goes from TERRIBLE, to AMAZING,  its so hard to accept when something starts to go tits up again, yano? I've had my partner to help me a lot through this, as I'm sure a lot of TSW sufferers have to be thankful for. When I look at these pictures I feel sick and just want to hide myself in a dark room, but having friends and family that are accepting, asking if you're ok, or if you need anything - just small things, really helps (and not to mention helps you feel less embarrassed about how your body is). Since being well I have been under a great amount of stress, I've gained a new job I really want to aim high with, I'm not earning a lot of money due to my small contract, I have a relationship to maintain, I've moved in and out of my family home, and I've suffered briefly with the crippling anxiety and depression I first experienced back when I was really sick. Times have been quite hard, however I'm hoping the Spring will bring good things. My derm is hoping to take me OFF THE MEDICATION IN MARCH, which I'm absolutely terrified about, as you can imagine. However, I feel I am in safe hands. I've not used topical, oral, or any other kinds of steroids in 10 MONTHS, which is just incredible and I feel so proud. Who knows what the future holds, but I'm plodding along for now, getting up and out of the house and enjoying each day as it comes is what I'm all about right now.

If anyone has any questions, you can message me on FB - Madeleine Grace Webb

Happy healing :) xoxo

Thursday, 3 September 2015

CICLOSPORIN UPDATE || 27.08.15

Hello again!
I thought I'd do an update on this blog now I finally have the chance (lol, looking at me just 2 months ago - never would I have known that I'd feel SO busy now)

My life is back.

After just around 8 weeks on my current treatment, I have got myself a new job, gone out with my friends, got drunk, met new people, eaten pizza - all the things a 23 year old SHOULD be doing, and I've never felt happiness quite like it (bless me, ay).

Just briefly to discuss my treatment. I started off on Ciclosporin, 100mg, one tablet, twice a day (morning and night). The symptoms, horror stories and information about this drug can be somewhat quite frightening, hence why I was so scared to go on the drug in the first place. However, I can't begin to describe the relief it has given me. When I wake up I no longer feel I need to rush to the shower/bath to wash and slather heavy duty creams all over me, some days I could quite happily go without a shower and lounge around in my PJ's all day - no bother. Even before I quit steroids, I would be so uncomfortable all the time, it was miserable! Every item of clothing seemed to aggravate me, all I wanted was to be stroked or cuddled just to take my mind off the discomfort.

NOW HOWEVER, my skin is silky smooth - something I haven't felt for a good 5 years now. I'd say it took my body around 4-5 weeks to stop flaring completely, during that time my legs were still pretty bad, my arm creases would randomly flare, as well as my fingers/hands/feet. At 8 weeks in, the only thing that bothers me on occasion (usually after a long day at work or a hot day where my feet have been in shoes all day), my ankles can become slightly inflamed/uncomfortable and itchy, but usually by the next day it's calmed down. I was so happy during the beginning stages - just to be able to wear my normal clothes again, I would roam around town or go on nights out with my legs out, just because I could (even if they were still an alarming purple/red colour). The most bizarre thing, is slowly but surely I have began to use normal shower gels, fragranced face moisturisers, makeup, perfumes, I can wear my watch on my wrist again, I've been eating dairy, wheat, alcohol -  all the bad stuff (just to kind of test my body I guess.. and because why the hell not seeing as I've gone without for so long), and I'm COMPLETELY fine. I just get the odd spot. (fucking big deal, right?)

The reason I'm writing this post is mainly to mark my progress up to this point. I went to the dermatologist yesterday and he's very pleased with my progress, he's now prescribed me to go down from 100mg twice a day, to 75mg twice a day. I couldn't be more excited, not gonna lie.. I say excited purely because 1) this seems such a gradual decrease and 2) he's confident enough to start weaning me off the higher dose, ALREADY - after just 8 weeks! My dermatologist has mentioned to me all the things that would be put in to place if I ended up going really bad again (trust me, my anxiety about this is sky high, as you can imagine). This includes different medications, or upping the dose to 100mg again (I can do this for up to a year, then I go on the different drug), however he believes at the rate I'm improving, he's hoping I'll get a good break - and in eczema sufferer terms this means a good 6 months to a year or two. EEE.

I have included some photos (unedited, I really am just as pale/translucent as I appear), below of my skin up to this point. Its quite crazy to look back at my older photos from a few months ago in comparison, it almost makes me feel sick to my stomach with fear and anxiety at how bad it really was! I will be writing another post, including photos at how I have improved in another 12 weeks time (My dermatologist wants to see me in 12 weeks now instead of 8, I can only see this as a good thing!) In terms of side effects, I'd say the only thing I have suffered from is increased body hair, my arms are, if I was to be completely honest, BLOODY HAIRY - for a female, although they always have been really I guess, plus I have light body hair, so no big deal for me personally. I also still burp everytime the medication seems to hit my stomach (lol), and bizarrely over the past couple weeks I have noticed my hair has began to lighten in colour - almost as though I have had random blonde highlights put through my fringe/fronts/underneath parts of my hair. As you can imagine these are the least of my worries right now. It's so good to finally moan about being at work all day, having to paint my nails or put petrol in my car - normal things.
If anyone has any questions for me about the medication or anything they feel I haven't covered in this post, just let me know :) x

8 weeks into Ciclosporin 100mg twice a day.





Snapshot of life since treatment.




Thursday, 2 July 2015

IMMUNE SYSTEM... WE NEED TO TALK

Well fucking hell, *excuse my French*, but I don't think I can even begin to put into words the absolute nightmare I have been through over the past 3 months.
To some I may seem dramatic, others I may seem mental, and others just an extremely tolerant, patient and hopeful human being. Probably all of the above have played a part in the Topical Steroid Withdrawal journey I've taken.
I want to begin by saying that I fully believe all 'TSW Warriors' (as we are called on the Facebook group), all have a some what similar experience, however what I have come to realise is that each one of us is unique. We have different strengths, reaction types, flare patterns, and choice of moisturiser - if you want to be specific.
I feel as though my journey has been tough, a hell of a lot tougher than I could have ever realised or imagined. I began this with thinking 'Well this has the worst its got in 4 weeks, surely I can tolerate longer, there are people that look burnt all over and I'm just wearing bandages on my arms at the moment..' but boy, did my skin deteriorate the longer I - you could say, tortured myself. Since my last blog post I have had to take anti histamines twice a day, two courses of anti biotics due to potential skin infections, and been bandaged on both arms and legs with viscopaste bandages.
Over the past 3 months I have done everything you would expect a body to appreciate, tonnes of bottled water, fresh and 'safe' foods, trying to keep a healthy mind by leaving the house. However, for me, enough became enough.
Its been a week and 2 days since my 6 day hospital stay at the BRI in Bristol. Never did I expect to 'surrender', you could say, to the care of professionals and start a course of treatment that is considered 'moderately dangerous'.
A week and 2 days ago I couldn't have been more frightened, at absolute despair, and not even myself anymore. Looking back I can KIND OF laugh a little, at how tragic everything was - but really, its not funny. Not funny at all. Sitting on the toilet seat waiting for my third bath of the day to run, I looked over my body realising really HOW red raw I was. From my forehead to the tips of my toes, I was swollen and on fire. I would itch from head to foot, not just an itch that you could rub and it would go away, one that felt like your BONES were itching. Every scratch feeling like a tiny orgasm (wish I was joking), that would spread and spread until suddenly my whole body would feel like I could just rip my skin off. With my arms and legs covered in bandages, scratches all over me, blood and ooze pouring from my pours, I cried and cried, panicked and panicked, screamed, cried some more, and when I found myself physically pulling at my hair and shouting 'I need someone to help me' to my mum. I knew I needed this to stop.

Although this post is somewhat depressing and quite shocking, I don't want people to be put off by quitting steroids, I would just seek HIGH QUALITY, professional guidance, first. I was feeling very down about myself when I quit steroids, I had just gone through a breakup, life as I knew it was coming to an end (uni), I just wasn't a happy human, and I wanted change. Never did I expect things to get so bad - would I do it all over again? Possibly. The drug I'm currently taking - Ciclosporin, is given to people with severe skin conditions - something I would have never been offered while I was slathering steroid cream over my body every other day. I would never really look like I had eczema at all - I was hiding under baggy cotton clothes and a drug that was suppressing my blood vessels - of course nobody would consider me a 'severe case'. Ciclosporin is taken under strict supervision. My dermatologists at the BRI are AMAZING and have guided me through this process without a single flaw, making me feel some what reassured and that I'm making the right decision - at least for me. At the moment my skin is 90% white again, I'm not using steroid creams, and I feel the best I have done for a long long while. I have to have blood tests and a blood pressure check every week for a month, (its been 2 weeks already), and then it drops down to every month. My consultant is pleased with how my body has reacted to the drug so far, all bloods have been normal and I have had no noticeable side effects so far (other than I burp loads after I take it - lol, and my skin looks bloody fantastic compared to 2 weeks ago).

PHOTOS:


This was around week 5, when I had my first panic attack. I don't think I've ever actually had a panic attack before, but my gosh it was bloody awful. Everything was out of my control, my breathing, even my eye sight, NOTHING could calm me down. I would sit on my bed, that was covered in towels to capture the fluid that was just constantly pouring of my skin, and rest my head on my knees - exhausted and in pain. At this point its easy to imagine how hopeless my mum felt, meaning she called an ambulance. I remember the fear I felt being naked and wrapped in a towel awaiting what was next - would they slather me in steroid cream? pump me full of an injection form of steroids. I can't express how completely and utterly scared I was. Anyway the ambulance men arrived, and OBVIOUSLY they had to be my age. (great) They were lovely, and after promising no steroids would go near me and I was given a strong anti histamine through IV, I finally started to calm down. I still had to go to hospital this night, to my utter shock resulted in a 12am-5am wait, and a complete shambles of service. Before I was even SEEN by the on call doctor, she had told the nurse to give me a course of steroids. After the long wait (of which I ended up needing a bed made up for me as I was so shaky/upset/just a general mess), we saw the doctor. She was rude, obnoxious and patronising. Telling me 'I give my 2 year old steroids to keep his condition at bay, if theres a treatment why wouldn't you take it', 'things you read online are not accurate'. Oh right so, all the people that have the same reaction after stopping topical steroids are all lying and painting themselves red? All the people 40+ who have been using steroids there whole lives, now have to take the strongest one on the market every day just to keep themselves comfortable? She was a dick. I didn't take the steroids and went home. Exhausted. 



Maybe around week 6-7? By this point I was walking around hunched over, my body temperature was shot away, I would shake then sweat, sting all over then sweat some more. After visiting the doctor what seemed like once a week, she became so worried about my condition, as well as my mental health, she referred me to an emergency dermatologist appointment at which I was seen in the same afternoon. People thought I was mental for not taking 'my medicine', but to me I felt as though steroids weren't the answer anymore, they were a temporary fix that I had to keep coming back to, my skin was thinning and felt generally weak while using steroids - I wasn't wearing the clothes I wanted and could barley be touched without feeling annoyed that my skin felt nigly (thus resulting in more cream. I was trapped in a vicious circle while using the creams, hence why I wanted this process to work SO MUCH (TSW)). Anyway after this I was given anti biotics, an antiseptic wash for the shower, and of course - a course of steroids. That I still refused to take. 






Week 8-10. This was probably when I started to get to my lowest point. Everything just started to get worse and worse. I was doing everything right - good food, supplements, water, occasional sunlight. Why wasn't I improving at least a little? I became a shell of my former self these weeks. I would cry a lot, not see friends, wake up at 2pm, not really do anything other than bath, stare into space, and scratch. Depression was definitely hitting me, something I've never felt before. I was terrified. Places started to crack that had never cracked before (fingers, toes, neck). Places began to become raised, purple, & raw. After bathing my whole body would POUR with a yellowy ooze that would smell horrific and could only be managed by bandages (so. gross.) Looking back I'm not sure how on earth I managed with myself this bad. I would wake up every morning covered in sweat, ooze, crust and skin. I just didn't want the morning to come. Considering I'm always a very happy, 'I'm fine' and upbeat kind of person, saying things like 'I want to die', and meaning it, was just horrific. 



Week 12 - the three month mark, the month where most people say things start to get easier. Could I see them getting easier? Nope. After my experience over the last 12 weeks, I knew for myself, and my family and friends, that it was time to put myself in the hands of the medical profession. For weeks before I would feel very strong in my head - NOPE, I'm fine, I'll be fine, everything will be okay and I'll heal just like other people taking the TSW have without using medication. However week 12 was when I realised my mental health was SO much more important than the risks of any drug. Before I felt that if I took steroids or other drugs to control my skin again, I would have just wasted my time, suffered for nothing and in the long run, my skin would be worse again. Then I realised - could it get much worse than this? I felt helpless, frightened, but also hopeful when I was emitted to ward C808 as an emergency case. Some people still don't understand why I didn't just 'keep using the steroids', but those people aren't me, they aren't eczema sufferers and they haven't witnessed the research, videos, and success stories I have seen from people withdrawing from steroids, not the mention the damage and long term health risks of applying topical steroids as much as I was. I actually had a great time while in hospital - as far as hospital stays go.. I made friends with the old ladies in my four bed room, the student nurses that DEFINITELY saw me naked at some point.. and of course the on duty nurses. Everyone was brilliant. I probably laughed at least once a day in hospital. A fabulous night shift nurse named Lisa would sit next to me while I bathed, talking to me about everything from boys, night shifts, going out in town, etc. She kept me hopeful about everything, cuddled me when I cried and would check to see if I was sleeping comfortably every hour or so. (I can't really say the same for the food.. although they did give me double portions of everything, considering I was and still am SO HUNGRY all the time due to my immune system fighting too hard.)



Today. Things are going great again. I can finally sit comfortable, stretch my body without it hurting, not need to itch every 5 seconds, not cry (yayyy!!), sleep relatively well, wear pretty things again (YAYYY!!),  I can get ready in an hour as apposed to three, I can chat to my mum about career goals, shopping, etc as apposed to 'I feel like shit' every 5 seconds. I CAN DRIVE MY CAR AGAIN!! My mental health has taken a good battering but I finally feel like Madeleine Grace Webb is creeping back on the scene. I am yet to tackle my other love (partnered with clothes), my makeup, but I'm sure that will come in time. I mainly wanted to write this post to show people what happened to me when I quit using my steroid cream, that I'd been using for just 4 years (as apposed to a lifetime, like some other people). How it made my skin react etc. I have NEVER EVER had eczema as bad as it was in my LIFE, never on my feet or hands, etc. I really wish doctors would stop prescribing steroids so freely, they are so dangerous and I was using them as if they were some magical potion that allowed me to be a normal teenager. Steroids are supposed to be used for TWO WEEKS - 'and if the problem persists, see your doctor', WHY WAS I NEVER TOLD THIS???? Why did the A&E DOCTOR tell the NURSE to give me steroids before she had even SEEN ME?! Oh my gosh it makes me livid, ha. I am now on Ciclosporin, an immune suppresent drug which is ALSO dangerous, and I am aware of that, however I feel confident in the fact that I will be on these tablets no longer than a year, I will be weaned off them onto weaker drugs, or even no drugs at all. My dermatologists at the BRI (Dr Dunnill & Dr Wordsworth) have given me great hope in that they have had successful results from the drug tonnes of times, and it is more common than not that people get a huge relief and quality of life during and after the treatment. I have a skin condition, some people have a heart condition, or a kidney condition, which they take drugs for the stabilise. I just need to accept that I just wasn't okay to carry on the way I was going. I know a lot of people doing what I did who still seek no medical help, your skin is an organ. An organ that can lead to MULTIPLE ORGAN FAILURE. I didn't realise this at the time, but I do now. I realise how ill I really was and I feel glad that I'm helping myself, almost like I'm giving myself a cuddle and saying sorry. I can only hope that these drugs are the answer for now, eczema is so unpredictable its hard to tell if I will ever be in the position I was 2 weeks ago, again. However for now, I am SO happy and SO relieved. Heres to getting back to seeing my friends, being sociable again, taking NOTHING for granted and living life to the fullest, once again :) 

If you are unaware of what made me start my Topical Steroid Withdrawal journey, heres an informative website - http://itsan.org/

If anyone has any personal questions, email me! Madiwebb8@gmail.com





Monday, 20 April 2015

JUST SHY OF A MONTH...

I can't quite believe I've made it this far, one whole month without stressing about using steroid cream every few days, on nigly bits of skin that I want to hide or just to GO AWAY!!
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.

Photos -
Week 1






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:
FOOD



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.

MENTALITY-

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. 
Madiwebb8@gmail.com

Madi
xxx


Saturday, 11 April 2015

FOOD SHOP!

After doing my research, I decided to go on the hunt for foods that are good for clearing toxins from the body, as well as replenishing the skin and its natural healing process. I've spent so long ignoring my problem of what could be described as a very sensitive gut, that doesn't really process bad fats, sugars etc very well. This basically means, all the good things in life - make me itch. Pretty much. It just seems so unfair when I see the rest of my friends and family carelessly having a handful of biscuits, a glass of wine on an evening, loads of greasy pizza, etc - with it barely even effecting them- they just may feel a little sluggish the next day. I KNOW if I'm to eat a domino's or have a drink on an evening, the next day I will be struggling with a patch of eczema SOMEWHERE on my body. Anyway, instead of getting down in the dumps about what I can't have, heres a post about what I CAN eat, and how I make it tasty :)

(PS I am also going through Topical Steroid Withdrawal, which I briefly mentioned in my previous post. As well as treating my outter skin in the best possible way I can, I am aiming to try for the next few months at least, and hopefully from now on if I can keep up the will power, to cleanse from the inside out, too)

We begin with - teas! I love my herbal tea's in the past few months, I make an effort to get decaffeinated teas because caffeine isn't the best for me. At the moment my favourites are Green Tea for throughout the day, and Camomile and Honey for the evening - both of which are devine, can't go wrong with Twinings! I got this Clippers tea in aid to help me sleep - I'm finding it so so hard at the moment to get a decent nights sleep. Its mainly my body temperature messing me around (more on another post), along with the general dryness/itchyness on my skin which for some reason seems to bother me most at night! The clippers tea is nice, and the smell is relaxing :)


I then got myself some vegetables, just to put with anything and everything I eat basically - Sweet potato and Avacado are supposed to be packed with good fats, as well as being beneficial for the skin. 


Some fruit! I love banana's and blackberries, my mum also used to feed me tonnes of mango when I was a baby and she said it never caused a problem for my skin, plus I looove mango - safe to say M&S pre packed is my favourite on the market - but I cannot afford £3 a pop for a small tray! So fresh ones will have to do for now :)


Salmon (good for natural oils), Tumeric (an anti inflammatory), Seeds (good for Vitamins), Kallo Multigrain cakes (just because I like to snack!), and Sweet Freedom - a sweet nectar made only from fruit that you can add into teas and porridge!


Water, water, water, the ultimate health kick. Since being signed off work for 2 weeks and having access to bottled water I've been drinking 2l of water a day, to try and rid my body of all toxins, and generally stay hydrated due to my skin being so so dry!

So yeah, heres just some of the foods I'll be eating for the next few months of healing my skin - amongst other things of course. When I was using steroid cream I'd find it so easy to slip up and just eat an icecream, or a whole bag of sweets, crisps or chocolate (at least twice a week when completing deadlines, or using a trip to the supermarket for snacks as an end of day treat). I also have a few meal ideas that I'm going to put up over the next few days! If you have any recommendations about foods that are good for the skins healing process, do let me know!
I'm also taking Vitamin E, D and Omega 3 supplements daily. 

Monday, 30 March 2015

BATH TIME...

Okay so here we go, my first 'real' post. I've basically decided I don't want this blog to be completely full of doom and gloom, so I'm going to try my best to make it an interesting read with nice pictures (as well as a beetroot red me, ha). The posts I've read on other similar blogs so far are very daunting and hard to read/look at. The photos are very scary and to be honest its frightened me to death. I'm basically going to try 'TSW' which stands for, Topical Steroid Withdrawal. This means all topical steroid is completely ruled out. This is such a scary thought for me. Whenever I sleep away from my house, visit a friend etc - basically stay somewhere that isn't home for just 1 night, I take my topical steroid with me. I'm almost petrified not to. This is literally because thats how painful eczema can be - the thought of enduring in a painful circle of itching and generally being uncomfortable is something I haven't felt (severally) for a good while. Whenever a red patch appears on my skin, my back feels slightly tight, or I can't stop itching my legs in the night - I'll whack on some of the 'magic' stuff. Those who have used topical steroid will know the harmful side effects of using the creams. Sometimes I don't read too much into it as I know it will scare me. However I can see just from the creases in my arms and groin/lower stomach area - My skin is so so thin and damaged. From what I've read its almost as though you have to let the bad skin grow out, and the new stuff come through. After general research of around 3-4 blogs and a few Youtube Videos, this process seems to take up to 5 months in general - and it does not look pretty. (The first blog I read - Laura's blog, typing in 'Topical Steroid Withdrawal' on Youtube and the ITSAN website, which explains everything!)

I'm kind of in between finding out if my eczema is because of my diet, or if its steroid withdrawal. However for now, I'm cutting all steroid creams, AND changing the diet - because, why not!
Today I tried some new bath salts that I've seen that people have recommended.
                           

'Dead Sea Salt', that claims to soften and soothe dry, itchy skin (don't they all, eh). I've tried a few bath prodcuts before that claim to work, but I haven't really given them enough chance to get to work, if you know what I mean. Also, the last time I went in the actual sea, my skin was in bits the next day, (Summer 2014). Before making up my bath, I had the quickest shower of my life, washing my hair, armpits and 'bits' (lol), because of course we all like to actually be clean. I then filled up the bath about half way and poured in about 2 (small sized, ha) hand fulls of the sea salts. At first my skin felt a little irritated, stang in fact (only very lightly). But as the water started to cool I really enjoyed my 20-30 minute soak in the bath. My skin raised in ares such as my shoulders, neck, face and arms at first, but continued to calm down. Woohoo!



I KNOW I look SO ugly in these photos, but hey, thats my face. Here I am enduring my lovely salt bath, mm. As you can see I have redness all over my forehead, around my mouth and puffy eyelids (due to crying and complete lack of sleep - I can't even lie, I'm going through a hard time in general right now). At the moment I know my skin doesn't even look bad, however I'm just documenting what my skins like now, in comparison to how it will be after a month of no steroid creams. (Arghh)
ANYWAY, After about 30 minutes of laying still with the occasional wallow, I got out and lathered myself in another new product I've invested in after reading up on some research. 'Jojoba oil'..


Apparently this oil is the closest kind of oil that resembles the skins natural oils, (oh body - how I wish you'd produce these on your own). I used this on my ears, parts of my scalp that are dry, my hands, and literally every crevice on my body. I find when I try something out on my skin, I just go for it in full force, otherwise I can never get a true feeling of how my body will react to it.  As soon as I put it on I felt like I was in some kind of at home Spa. It felt glorious! Very lightweight and instantly moisturising. There is no pungent smell, its Vegan, not tested on animals, 100% naturally cold pressed, and organic! The only thing I have found throughout the day, is that for some bizarre reason, I have bumps coming up on my stomach (prone to eczema flares) and shoulders. So, in the past couple hours I have put some of my usual moisturiser - Aveeno, onto the bumps. This has calmed it down somewhat. I'm presuming my skin is just confused from going from moisturiser to oil maybe? Or the fact I haven't used steroid cream for 3 days now, when I'm used to applying it near on every other day.

PS - This is what I listened to while in the bath, It actually randomly came on shuffle from another song I was listening to previously, but isn't it awesome? Relaxing vibes yo.


I literally want to apologise for how GROSS these photos are - for someone who loves makeup and only ever posting pictures online of me dolled up - this is horrendous paha. I went to Sainsburys this afternoon (blog post tomorrow on what I bought), and this is what I looked like when I came home. My forehead had completely calmed down, as well as my eyelids, however that stubborn little patch of red above my top lip WILL NOT GO (hasn't for ages now, despite using steroid on it too). But, in time I know, it will. All the places I would usually apply steroid - top lip, forehead, and down my neck/under my chin all flared today (as well as my stomach, upper thighs, back and arms), but I resisted the usual go to magic fix of topical steroid.

This is literally a first impressions review on these two products so bare with me while I trial them longer, I'll be sure to let you know what I'm like after a week of bathing and oiling up ;) ha.

Has anyone else had any positive results from these products before? Let me know.
Madi xx

Twitter - Maaaadeleiine
Facebook - Madeleine Grace Webb
Email - madiwebb8@gmail.com