LIFE’S AN ITCH…

How do YOU measure achievement?…
Aviary Photo_130839567653829447
So last week I turned yet another year older, or another year ‘younger’ as I like to say. Let’s face it, the word ‘younger‘ is far more welcoming than that of ‘old‘. In the words of my Nanny Mave in her broad black country accent, “Dow the time fly!!!”, said just before she reminds you of the date and that it will “soon be Christmas”.  She’s right you know, the time just seems to be flying by which is a terrifying reality. It makes you start thinking of the future, questioning what you have achieved. I don’t own my own house yet, I don’t have that Audi I’ve been dreaming of, I am absolutely nowhere NEAR starting a family, nor am I a managing director of that huge company you always thought you’d be a part of, on copious amounts of money!!! What have I achieved!? To most, they would say nothing. Late twenties and no further on in life.
To all you lucky people out there who only have to worry about what new shoes to wear with that new expensive dress this weekend, have you not seen what we’ve all been through this past year!!!?
What have WE achieved? EVERYTHING!
Eczema  face 1
Aviary Photo_130839567328826394
So yes, I may have moved back in with parents, but as the saying goes… ‘Taking a step backwards after a step forwards is not a disaster, it’s the cha-cha’. Ok, so we may not be able to actually dance because most of the time it’s hard to physically move without being in some sort of pain but in our minds we are having a right little disco! Yes, I did just say DISCO. You know, those things we used to go to as children to show off our disco dancing shapes to the spice girls and eat jelly and ice cream? Ahhh those were the days! Slightly off topic but what do the youths of today call them? A dance? No, that’s the 1950’s. A rave? No, that’s the 1980’s. Please someone enlighten me… what are they called these days? Does a DISCO still exist?
Aviary Photo_130839566960950772
So back to what I am really writing about… achievement. It’s so strange how most people base achievement on what you own and where you work. I hear so many people talk about how ‘well‘ my sister is doing and yes, correct, she IS doing well. She’s doing amazing in fact. She’s about to move into her new 4 bedroom house with her fiancé, she’s due to get married on the beach next year in sunny Sicily, she has a sparkling BMW and never looks anything other than beautifully stylish. I’m so proud of her for achieving all these things because she’s worked so hard for them. It makes you think, wow, I don’t have all of those things and I’m the older one with the degree! I had so many prospects, what happened? Well, this happened. Severe eczema happened. Depression happened. I, happened. My priorities changed. No longer was my main objective to get to the top of my career as quickly as possible, my main aim became to get through each day without giving up. My focus wasn’t earning the cash to buy that expensive watch I’d always dreamed of, it was to remain positive for every second of the day which is far harder than it sounds, believe me. Staying strong and being positive every day when all you want to do is give up, for over a year is possibly the hardest thing I’ve ever had to do. It’s physically and mentally draining. When I look at the facts, it turns out my sister hasn’t achieved any more than I have, which I know she will completely agree with, our achievements are just different. I guess what I’m saying, for all you people out there, and I know there is a lot, who feel like you haven’t achieved anything compared to others, is that you need to take time out for 5 minutes and think about everything you have gone through. It doesn’t matter what you own, it matters that you are still here today, living life. Yes, you may not be living life the way you always thought you would be but living you still are.
So you may have lay in bed all day because you’ve been in excruciating pain but you’ve got through it, ready to start another day! THAT’S an achievement. So you’ve had to quit your job because of your condition, but you’ve took one massive brave step to help get yourself back to good health! THAT’S an achievement. You’ve inspired others with the same condition and insecurities to get up and carry on! THAT’S an achievement.
Eczema chest 1
achievement 5
Don’t worry about what you don’t have and look at what you do! Brace yourself, I’m about to be super cheesy now… You have the strength of an OX (I image them to be rather strong), the determination of a hungry Lion (I image them to be rather determined) and the beauty of a summers day (There’s nothing more beautiful than the sunshine right?). You’re all amazing and don’t let anyone tell you otherwise.
Ok, so Sandra from down the road may look at you and say she thought you’d have been doing ‘better’ by now, but no offense Sandra, who are you again??? What significance do you have on my life again? Oh, none! That’s right. 😉
So all of you warriors, it’s time to be proud of yourselves, because you’ve achieved far more than you realise.
Aviary Photo_130839573529861134
Peace Out.
amy-louise
LINE AND HEART

 

OH… HELLO PALE, NAKED FACE!!!

For the first time EVER this is me sharing with you my completely normal naked face and to be honest I’m feeling somewhat nervous about it! I’ve gained so much confidence when I’m covered in eczema that I’d forgotten what it feels like to be insecure about the way I look without make-up when I’m eczema free. People can be cruel sometimes and it’s hard to read negative comments. I guess I’ve just become so used to having a face full of eczema that I’d actually forgotten what I really look like. All of those old feelings of hating the way I look just seemed to come flooding back when I first looked in the mirror, but this time it’s different. This time I’m thankful for all of those features I’d spent so many years despising. How does the saying go again? ‘You don’t know what you’ve got until it’s gone’… I couldn’t agree more. You can only work with what you’ve got at the end of the day and this is just what I have to work with.

naked face 1

Pushing aside my insecurity for baring all… CAN YOU BELIEVE IT!!!? A CLEAR FACE!!!! This I have not seen for years. I’d forgotten what having a smooth face felt like. The other day a lady said to me “Gosh, you look pale, are you feeling ok?” :O I was literally skipping with joy inside! For the first time in over a year I just look ill because I’m deathly pale and not because I have a flakey, patchy, weepy, swollen, bleeding face! I’ve never been so happy to look ill before! I mean don’t get me wrong, I’m still pretty much covered in eczema everywhere else but my face, neck and chest are giving me hope that one day my whole body will look as good as this. I can’t stop feeling my smooth skin. I never thought it was possible to love my forever troublesome skin but here I am, completely in love with my super paleness! I used to get so down about people saying how pale I was, and suggesting I need get a tan but now that’s all beautiful music to my ears! I AM SO PALE I LOOK ILL AND I COULDN’T BE HAPPIER! 🙂 I absolutely do not intend to get a tan and I will cherish my paleness for as long as I can. I don’t doubt that this won’t last so for now, I’m going to enjoy every inch of it. 🙂 A little message to all of you wonderful people out there: Whatever problems and troublesome times you’re going through right now, whether that’s physical issues, mental issues or just issues with life in general, keep battling and think positive. I know sometimes it doesn’t feel like you will ever see the light again but this is proof that things do get better. It’s easier said than done, I agree, but you just need to give it time.  If I can do it, so can you 🙂  Peace out you beautiful lot. Loves.xx

amy-louise

LINE AND HEART

A beautiful reflection of the last 365 days…

WUUUUUUUUUUUUUUUHOOOOOOOOOOOOOOOOOOOOOOOOOOO! YEAH!!!!!!

day 365

This week I hit ONE WHOLE YEAR of TSW!  I cannot believe it has been a whole year already. 365 days of looking like a crack whore and I’m still smiling! Well, smiling when my tight, dry skin lets me. For a year I have been like besties with hell. I’ve become a frequent visitor to that fiery furness!!  If this was the 15/1600’s I’d have been burnt at the stake for being a witch months ago! Not that I am ACTUALLY a Witch of course, but this constant weepy, itchy, smelly skin would surely have been mistaken for the devil by some curious Tudor citizens!  That aside… I’M STILL HERE! I MADE IT!

When I think back to DAY 1 I shiver. I knew it wasn’t going to be easy but did I think it was going to be THIS hard? Absolutely not! Would I have still have gone ahead with it had I known? ABSOLUTELY!

day 27

day 30

Making the decision to stop steroids and go cold turkey was the BEST decision I have ever made however difficult the journey has been.  No, I may not be healed but I’m on the bumpy road to getting my life back and that is an exciting thought! Even good ole’Dorothy following her yellow brick road to Oz had to face a few “Lions and Tigers and Bears” (OH MY) on the way. I’m telling you now Dorothy, you’re a lucky lady because I’d welcome Lion and Tigers and Bears with open arms. I’d invite them round for a cuppa any day instead of having to dine with Mr. ITCHY, Mrs. SCRATCHY and Ms. WEEPY that’s for sure!!!

one month

I know Topical Steroid Withdrawal is pretty darn horrific but it has strangely had a huge positive effect on me. I have my moments, naturally, where I cry and scream and wish it would all just end but on a whole I stay as strong as a Ox (I think that’s how the saying goes?).

stay strong

Since I started sharing my eczema journey with you all last year, my life has substantially changed. Friends have become strangers. Strangers have become friends. I couldn’t have got this far without my amazing support network so for all of you who have supported me and have joined me on this difficult road I thank you so so much. You have been incredible and I will be forever grateful.

I’ve grown so much as an individual. I used to always be a person who would constantly worry about what other people thought. I’d worry about not being ‘beautiful’ and I’d frequently get upset because I felt ugly. My insecurities completely controlled me but actually, for all those years I’ve just been blinded. Absolutely blinded by the barriers set by society about what is or isn’t, the ‘ideal image’. WHO CARES?

Ever since I’ve shown you all my photos of my swollen face, my weeping skin, my blotchy body and my thinning hair I’ve had nothing but positive comments. I have had more people call ME beautiful since I’ve been showing my imperfections than in my whole lifetime.

day 59

Beautiful… what is ‘beauty’?  If there is one thing this last year has taught me it’s that beauty isn’t all about looking good in that swimming costume you saw your friend wear last week, it’s not about having the perfect pony tail and the best tanned legs in that expensive dress. Beauty is about confidence, it’s about not caring what people think, it’s about loving you for you and not wishing you were someone else. We can’t change what we have so we need to stop wishing we looked more like other people and rock the hell out of what we’ve got. It’s about loving the very skin you’re in. Your imperfections make you different. Embrace them. Be your own kind of beautiful.  How does the saying go again? ‘Beauty is in the eye of the beholder’ and this I cannot stress this to you enough.  I am so grateful to TSW for opening up my eyes and making me realise that actually, my very existence doesn’t depend on how attractive people find me and neither does yours. Beauty comes from within and since realising this I feel like a huge weight has been lifted off my very sore, eczema ridden shoulders.

together we got this

I know that suffering from a skin condition may make you feel unattractive from time to time, but believe me when I tell you that each and every one of you are stunning individuals. To deal with all the issues that come with having a skin disorder and still keep smiling is an amazing quality to have. That love and strength that shines through inspires others to also keep smiling and isn’t that what it’s all about?

Smile and the world smiles with you.

Thanks again for all your support throughout this last year.

Peace out you beautiful, beautiful lot,

amy-louise

SMILE 1

LINE AND HEART

NOT TODAY ECZEMA. TODAY YOU LOST…
ALL THE WORLD1

This weekend was a big weekend for me. You may think, PAH! You, dressing up as a Tudor, performing? Difficult? Noway! But I swear to you it’s true! Performing yes, comes naturally to me but TSW really knocked it out of me and for a year I’ve been hibernating like a tortoise in my little Victorian terrace shell!

tudor

To put myself out there on the stage allowing everyone to stare at me, judging my skills as an actor is something I’m used to. Having people judging me because of the way my skin looks is also something I’m used to but combining the two really turned up the pressure.  Pressure= Stress. Stress= ITCHING!

courtyard

It was a weird little feeling. I was so excited to be back doing what I love more than anything but terrified of throwing myself out there for all eyes to see. What if I can’t do it?  What if I have a flare up and need to have a scratching fit? What if I start shedding skin everywhere? What if I’m just not ready for this yet?  So traumatic.

stocks

The stage isn’t a place whereby you can fade into the back ground going unnoticed. I will be centre of attention, I will have everyone focused on me, judging my ability to act. Little would they know just how hard acting would be for me this time. Not only am I Suzannah Shakespeare, but I’m also performing as a different me. The professional, confident actress with no troubles in the world. How inaccurate. It wasn’t my ultimate best performance I’ve ever done but considering the circumstances I think did pretty well.

The anxiety I felt the night before heading down to Stratford-Upon-Avon kept me awake, which was rather a good thing considering I was on a 12 hour night shift.

I know you all say I’m so strong to get through this with a positive attitude but I still get the same insecure feelings as you all do.  I still get worried, anxious, upset. I certainly felt all of this whilst on the journey down there. It was going to be the first time I’d have saw the wonderful people at Tudor World for over a year, what if they don’t recognise this new me? So much has happened in the last year that I feel like a completely different person and what if they don’t like this new Amy-Lou?

the falstaff experience

Turns out all of this worrying was for absolutely nothing because as soon as I took the first step onto the original 16th century cobbles that lead up to the museum  I felt like I’d come back home and I was so relaxed. I felt inspired, rejuvenated, alive!

ME AND KINGS FRAMED

It was amazing to once again get stuck into rehearing and to be working with my awesome colleagues again! I was so busy it really distracted me from my itchy nightmare. My colleagues made me feel so at ease, even getting changed in front of them just wasn’t an issue at all. It literally took so much man strength to squeeze me into my dress. I’ve put on a whole stone since I last tried to fasten up this little number. I’m pretty sure that’s down to not being able to do any exercise since TSW because sweat and eczema do not get on! If you could have seen me trying to get into this dress I guarantee you’d have been on your back laughing!

 me2

 Once in that dress, I felt amazing! I felt like me again! The ‘me’ that loves performing, that loves making an audience laugh and loves being complimented. I DID IT! I finally, after 11 months of TSW got back on that stage! I am so proud of myself for it! If we can get through all the pain steroids have induced on us and still stay positive, we can do ANYTHING!

me and chris framed

I spent a day having people take my photo, calling me beautiful because of the dress and I loved every minute of it! My skin looked great and I felt great! When you’re smiling no-one even notices your imperfections because smiling is so contagious. I was at no point questioned about my eczema and for once, I felt normal. People didn’t want a photo with me because I was the girl in the paper for having a skin condition, I was just a girl playing a character in a Tudor costume anonymous to the general public and I couldn’t have felt happier.

me and kim framed

I still stick by not pushing yourself too far and accepting your limits but sometimes you’ve just got to get out there and start living again! Challenge yourself! Whether that’s leaving the house, getting out of bed or even just making a cup of tea, try it. It is just such a rewarding feeling when you’ve successfully achieved whatever challenge you may have set yourself. It will be worth every ache, pain and effort to just feel proud. Just replacing that feeling of failure with success will pick you up if you’re having a down day. It will make you feel positive, it will make you realise you can still live life, and it will give you a taste of what life may feel like when you get to the end of our super dark, itchy tunnel. If you don’t succeed the first time, get up and try again, don’t give up. What’s that song about getting knocked down and getting back up again? There’s no such word as can’t here, if I can do it, you can do it. We are all in this together and together we will beat this!

YOUTH I ADORE THEE

What challenges have you set yourself? What challenges have you already successfully completed? Or what are you currently trying to work towards?

I want to hear all! 🙂

Loves.xx ❤

amy-louise

PS. If you like ‘The Terrible Tudors’, you will love ‘The Falstaff Experience. Tudor World’. Check out the website for up and coming events… http://www.falstaffexperience.co.uk/

LINE AND HEART

TITLE

Seriously guys… We know you are only trying to help but trust me when I say, you’re not!

STOP SCRATCHING

WOW! Thank you for your advice Doris! I will stop scratching straight away! Who’d have thought it was that easy hey! If only we’d all been told sooner, we’d have saved ourselves from so much suffering! What are we like!!! *Rolls eyes*

YOURE ONLY MAKING IT WORSE

Oh really!? Are we!? Aren’t we a silly lot…. Slap our wrists!!!  (Except, don’t do that as that may trigger a scratching fit… yes! We know… WE MUSTN’T SCRATCH)

IS IT CONTAGIOUS

YES! It is extremely contagious so you ought to stay the hell away! Like seriously, just talking to me means you may be able to catch it so better not breath another word in my direction! (There’s one way to get rid of morons)

YOURE GETTING SKIN EVERYWHERE

Aaaaaand the award for ‘BEING ABLE TO STATE THE OBVIOUS’ goes toooo….. YOU! *Claps* What an achievement! And there we were thinking you were stupid!

YOUR SKIN LOOKS REALLY BAD

Oh well that’s awkward! There I was thinking I was having a ‘good skin day’, I’d better put my long sleeve polo neck jumper back on then.

YOUR SKIN IS LOOKING GREAT

Well, it’s not is it but it’s nice to know you’d lie to my face just to make me feel better I guess. I will be sure to never ask you if “my bum looks big in this”.

OH I GET A BIT OF DRY SKIN IN THE WINTER

Ok, let’s get one thing straight… Dry skin and eczema, not the same! Don’t compare your small dry patch to my itchy, scabby, flaky, weepy, eczema! Are you chronically under slept because of that dry patch you have there? I DIDN’T THINK SO.

So I mean really, the moral of the story is to take a leaf out of Ronan Keating’s book because *sings* “You say your best, when you say NOTHING AT ALL”.

SAY NOTHING AT ALL

Thank you,

amy-louise

LINE AND HEART

The World Wide Story About THE WOMAN WITH SEVERE ECZEMA CURED BY PORRIDGE…….and ME.

Firstly, I sincerely apologise for my absence. Me and eczema have been in a bit of a disagreement for the last week. You see eczema has decided to get it’s own back on me for trying to banish it from my life by relentlessly attacking my hands, making me unable to type and therefore unable reply to you lovely lot. I haven’t forgotten about you, you are all amazing and I promise I will get round to it.
DAILY MAIL
Since the article about ‘my’ story was picked up by the news I’ve been over whelmed by your wonderful comments, emails, letters and advice.
See news article here from ‘The Daily Mail’…
 
For any of you that know me, you’d know how much a hate the daily mail. You really can’t believe anything read in the daily mail because it’s such nonsense but for the first time EVER I’m finding myself thanking ‘T.D.M’ because most of my new blog readers found me through their article. So yes, this will be the only ever time I will say this, so lap it up whilst you can… THANK YOU DAILY MAIL.
I was utterly shocked when I started receiving emails from people in Africa, Australia, Canada and BRAZIL! Now I say ‘BRAZIL’ in capitals because I have to say, you beautiful people have literally been so supportive and your messages are so poetic but I need you to know right now, that ‘google translator’ isn’t translating your messages very well. Just needed to throw that out there because I need you to know…
See example below…
BRAZIL EMAIL
So I suppose I should explain why I’ve separated ‘The woman cured by porridge’ and myself in the title of this post. Well I guess I needed to do that because as fantastic it would be, I’m not the woman with severe eczema cured by Quaker Oats. If only it was THAT easy!!! I mean, don’t get me wrong, I’ve got nothing against Quaker, infact I welcome him into my life with open arms as you all know but he certainly hasn’t cured me and for the record I don’t pay £1.99 for my oats, neither do I get them from TESCO, as the article states. I felt that needed to be clarified considering I’ve been told I am a PORRIDGE SNOB by an outraged article reader, he suggests I’m sending out the wrong message to you all by making people who can’t afford to pay £1.99 for porridge feel really rubbish. I somehow feel like he’s missed the whole point of the article, don’t you?
You’ve got to laugh at these things.
PORRIDGE SNOB
If I’m not the girl cured my porridge, who am I?
I am Amy-Louise James. I am a normal human being battling societies idea of what is ugly and what is not. I am not just the girl with eczema, I am just 1 human in a huge sphere of being’s around the world clawing through the conflict of ‘The perfect Image’ set by the world wide media. I am just me. The same as you.
Whatever the skin condition. Whatever the emotional scarring. Whatever the cultures, the beliefs, the language spoken… we all have one thing in common… BODY CONFIDENCE. Whether you’ve reached it already or whether it’s still something you’re striving to touch, it effects the lives of all of us. Every individual is motivating the other to break out of that beauty stereotype created by the media and together, we will make a difference.
Yes, my story has gone world wide, but that’s just one chapter, in one book, in a library full of stories.
GUESS WHO
Let’s stop thinking of our physical and emotional conditions as flaws because there are so many of us with skin conditions that it kind of just makes us ‘normal’.
Don’t you think?
Loves.xxx
Amy-Lou ❤

LINE AND HEART

BAND 1

MOANathron: My first ever experience at the DERMATOLOGY UNIT.

RECP

So I had my very first ever appointment with a dermatologist at my local hospital this week. I won’t name and shame. I’d hereby like to briefly mention that if you’re reading this post in a hope to find some advice on how to manage your eczema then you’ll be setting yourself up for disappointment. How can I advise anyone about something I’m rather clueless about? Yes, clueless is exactly what I just said. I have absolutely no idea what on earth is actually going on right now and for this reason alone I felt it completely necessary to get all of my thoughts and feelings about my first experience with ‘professionals’ out and shall apologise in advance if I take anything out on you guys, my lovely, and hopefully understanding readers. Please be forgiving. Here goes… My, MOANathron.

When I went to the doctors last week about my painful, itchy, infected hands and she referred me to a skin specialist I was overcome by joy! I had been desperate to be transferred to a specialist for over 20 years so the very thought of actually seeing one made me so excited I was all fuzzy inside. That fuzzy excitable feeling however, turned into a shaky nervous wreck when I stepped into the overly quiet and airy waiting room.

After being told I don’t have an appointment by the incompetent receptionist and making a scene in front of all the people who were trying to hide their urge to find out what the drama was all about by their sad ‘I’m just sitting here quietly whilst waiting for my appointment’ facial expressions, I look around awkwardly and see all the people being awkwardly silent, sitting as far away from others as physically possible which was also rather awkward. Did I mention it was awkward? I did, oh right… After I choose my seat wisely I sat my sore little-self down on those standard fake off cream leather chairs that have blatantly been there since the early 70’s whereby they’d have been the new ‘modern’ back then and a certain ‘talking point’ for all the ‘small talk’ that is compulsory for every patient to make. It’s all part of the rules and regulations of the ‘waiting room’ don’t you know. The only small talk anyone could make out of those chairs now was demonstrated by ‘Sandra’ during a conversation with her waiting room friend ‘Jan’ whereby she said “they could do with changing these chairs” whilst pulling the padding out of the heavily worn corners. Do you know what Sandra, I have to agree with you there, this is outrageous! I’ll be writing to the government pronto mark my words! Oh wait… I’m getting my health care FREE of charge and seeing the professionals without having to take out any HUGE crippling loan to pay for my treatment did I hear you say? I did? Oh right, okay, I think I’ll let the worn chairs slip then. THANK YOU NHS!!!!! I have nothing but love for you despite my current MOAN.

my best look

After spending 45 minutes trying to suitably disguise my itching by gradually folding my limbs in several different (and sometimes creative) ways and hacking up a ‘chesty cough’ to drown out the sound of scratching, the name LOUISE JAMES was being shouted and echoed around the room. It was only on the third calling that I realised that was probably me! I was shown into a little office that had obviously struck up a deal with the magnolia paint when it was first built and asked to ‘take a seat’. “So Louise, what can I do for you?”… Okay, so let’s get started by taking another glance over my records so you can firstly: GET MY NAME RIGHT and secondly: find out what it is exactly that I am expecting you to do for me. Ah forget it, I’ll just go ahead and recite my heavily tedious monologue on Topical Steroid Withdrawal which I have learnt word perfectly over the last 9 months. I’d certainly get an A for effort, an A for emotion and an A* for attention to detail. You however, Mr. Skin Specialist get a big fat U for your ability to listen. He informed me that I was supposed to see Dr. Woo but as Dr. Woo wasn’t in today I’m having to see him… wait for it… Dr. WooP! YES! WOOP! There was certainly nothing ‘woop woop’ about him that’s for sure!

I was absolutely horrified at the seemingly lack of knowledge about Topical Steroid Addiction. He just couldn’t understand why on earth I would refuse to use steroids. After a long ball game of ‘catch’ whereby he threw all the reasons why I SHOULD use steroids at me and I threw all the reasons why I SHOULDN’T use steroids back at him he said “I will have to speak to a consultant about this” I’m sorry what? You’re NOT a consultant? Who exactly are you Dr. Woop and what is your area of speciality exactly because it sure isn’t the SKIN!? He nervously asked me to “Wait here whilst I go and get her”. Damn right you’ll go and get her! I haven’t made this long, agonising journey on public transport to not speak directly to a consultant! To say I was a little annoyed and frustrated would be an understatement!

BOARD HOSPITAL

So the lovely lady consultant came in and hovered over me like a honey bee hovering over a wilting flower. She took a look at me and said in her beautiful over-seas accent “You look like you not live full life!”… OH! THANK YOU! Not only am I being made to feel like a bit of an inconvenience by you people, I am now being told I look like I don’t live a FULL LIFE which I find a little insulting. As insulting as I find your comment ‘consultant’ I have to agree with you. No, I do not live a full life. Yes, my eczema does get me down. Yes, I am chronically under-slept because of it. Yes, I am finding it difficult to work. I mean, are you a councillor or a doctor? As lovely as it is to have you show an understanding, shall we start to talk treatments? I mean, I had been in the office for over 40 minutes at this point and so far no-one had suggested any treatments other than steroid creams which I’d made clear is not going to be the way forward for me. After I say “how do we move forward with this”, she starts reeling off all these medical words which she seems to assume is common knowledge. I have no idea what you are saying lady! Talking to me in DR LANGUAGE is like speaking to me in a different language all together.
She then starts talking to Dr. Woop about what I should use as if I’m there at all. She mentioned tablets that I shouldn’t take if I’m wanting a baby anytime soon and I must make sure I take the contraceptive pill whilst on them. I was just waiting for the moment I have to awkwardly explain why I am in no near danger of getting pregnant due to being in a ‘same sex’ relationship but that moment never came.
After she discussed all sorts with Dr.W, she left the room and he wrote out a number of things that I was supposed to take to my doctor to get her to authorise the prescription and quickly moved off topic. Erm… ok.
He said I needed a blood test, and a chest x-ray. Ok, great, so when do I have this blood test &chest x-ray and where do I go to have it? He had no idea where I go to get the test and xray and told me to look at the map outside. WHAT IS WRONG WITH YOU? Do you not work here? Where have you come from? You don’t seem to know anything which is a little concerning.
So after a highly frustrating meeting with the doctor who was not a consultant, I was ushered out of the room and taken to what seemed like a store cupboard and left there whilst he scurried off back into his magnolia box. As the ‘cupboard’ was full of brown cardboard boxes which nurses were perched upon in rather cramped conditions I can only assume this is where they ‘store’ the nurses. The nurses were going about there daily chats about ‘Rachel’s sons school parents evening’ and it felt as though I just wasn’t there at all. Had I unknowingly whipped on Harry Potter’s invisibility cloak? “Hi there, can we help you?” YAY! I’m not wearing the cloak of invisibility after all! That’s a relief. I explain that the Dr. brought me here and a kind lady directed me to a ‘treatment room’.

BED HOSPITAL

“So, where are we putting them?”…….Them? Putting? Where? What? I’m confused, yet again!!! Turns out they were bandaging me! Oh right! That’s what we’re doing then. Great! We’re getting somewhere. 😀 She asks me which areas are my most problematic at the moment and I say my hands, fingers and neck. “Oh I can’t bandage your neck” she laughs. HA HA HA… How very funny! I’m in stiches! 0_0 Note my sarcasm. I wasn’t asking her to bandage my neck, I was simply answering her question. She asks me what it is she is using on me but I honestly couldn’t tell her! She looked at me as if I was a little stupid but how can I advise her on something I’m clueless about. I haven’t been told what I’m even doing in the treatment room so I sure as hell haven’t been told what ‘treatment’ I’m having. If I’m honest, I just wanted to break down and cry. After all these years of longing for this, I felt completely let down like a newly popped helium balloon and I just wanted to go home, have a cup of tea and bury myself in cotton blankets.
She left the room for quite sometime and then reappeared with a little tube on Balneum cream. Something I’d never tried before. She plastered it on my arms and started rapidly wrapping wet bandages around them. She then applied a dry bandage and then another ‘slip on’ bandage. I asked her how she did it, but she said I will have to come in tomorrow for a tutorial as she has people waiting. Oh, ok… sorry to keep you from your work. I was told I have to book an appointment for one month to see the consultant. Ok! Great! A little direction is always welcome.

ARM

So when I went to the reception to book the said appointment I just ended up waiting endlessly staring into the empty office and listening to the ticking clock. A formally long queue had taken form behind me and a lady asked a passing nurse whether there was anyone on reception because we’d been waiting a while. The nurse went into the back office and said “June, are you manning reception? There seems to be a queue” to which, we all hear the reply “Oh, don’t worry, I’m just finishing my sandwiches and then I’ll be straight out”… JUST finishing your sandwiches are you June?! By all means, take your time, we wouldn’t want you to starve to death! It’s not like any of us have places to be or sandwiches to eat ourselves, we’ll wait here all day if you wish, no problem!

SARNIES

After June had finished her sarnies she came out and asked how she can help. I obviously told her I needed to book an appointment for 1 month and she laughed. Are you ok June? Did I tell a joke? I think I must have missed my own punch line there. “I can’t do a month! I’d have to go through everything”… Isn’t that your job? I’d have thought booking appointments was one of the many things on a hospital receptionist’s ‘to do’ list. She advised me that she’d write to me and turned her back. I rather loudly asked her whether she’d like to know my availability before she booked anything and wrote to me? But she just repeated “I’ll write to you” as if I hadn’t heard her the first time. I could have seriously stood there and demanded she listens to what I’m actually saying but I was so tired and frustrated by the poor level of customer care that I just wanted to get out of that place as quick as possible. I said FINE and stormed out. If I were a hedgehog, the speed of which I left that hospital would have certainly given me the title of SONIC!
I stood waiting for the bus with bandaged arms, lots of paper, and still with itchy, painful hands, fingers, neck and chest. I somehow feel as though they were missing the point somewhat and felt as though they just didn’t listen.
I hope my further experiences with the ‘professionals’ there will be better. Let’s face it, it couldn’t get much worse.
So for all of you lovely people wanting for me to share my new found knowledge I’ll let you know it when I do. My doctor’s have informed me my prescription will be ready in 2 working days so I’ll make sure I write up everything they have given me when I’m actually able to read what it is. 🙂

PRESCRIPTION

For now though, thank you for reading my MOANathron. I feel much much better now I’ve managed to get that off my poor, painful chest! I know it was a tedious read but I really couldn’t have made it sound any more exciting than it was.
Have you had an experience with a dermatologist? Was it better than mine? Please let me know and help me put my faith back in our health care system. 🙂
Loves.xxx
amy-louise
LINE AND HEART

WHAT IS IT REALLY LIKE TO BE AN ECZEMA MUM?

 Aviary Photo_130709123486970167
March the 15th, MOTHER’S DAY! A day for all those Mum’s out there to be reminded of how very special they are and a chance for all of us ‘children’ to rectify all those times that we maybe didn’t appreciate them as much as we should have. I have to admit that throughout the 25 years of being on this earth I certainly take full advantage of having a day where I can be a soppy so and so and tell my mum how very much I love her.
Aviary Photo_130709124181024121
I’m not a mother myself, but I can imagine motherhood must be as difficult as it is rewarding, especially when having a child suffering from any physical or mental disorder.
I applaud anyone looking after someone suffering with severe eczema because it’s just as hard for them as it is for us itchy lot.
Growing up is hard enough: puberty, homework, grazed knees, school girl fall outs, not looking old enough to get into that 15 rated film all your friends are going to see without having to deal with eczema as well!
When growing up I found that having a skin condition that changed my physical appearance was extremely difficult. I hated myself and thought I was ugly so when Mum used to make comments like “Maybe we should have a look at how to cover it up” I used to get angry at her. I thought she was confirming the very thing I’d spent most of my time worrying about… being ugly! I thought she was ashamed to go out and about with me because of the way I looked which is silly because the only person thinking it was disgusting and being ashamed to go out was me. It’s only now that I’m an adult doing adult things and living an adult life that I realise that all of those comments she made was because she cared. She wasn’t bothered about the way the eczema looked, she was just bothered about how sad it made me.
As I’m not a mum myself, I thought I’d ask my mum exactly what it was like having a child growing up with severe eczema and share her answers with you guys.
 What was the most difficult part of having a child growing up with severe eczema?
“Seeing you suffer. The worst time was when you started to go to University. When you were little, I could cradle you as you cried yourself to sleep but as you got older I felt like I couldn’t do as much. I found you a really angry person. When I used to try and stop you from scratching you used to fly off the handle and take your frustration out on me. I was like your verbal punch bag. That hardest thing was taking you down the doctors and specifically requesting they transfer you to a specialist but being constantly turned away with stronger steroid creams as the only solution. We were told it was incurable and I felt as though every time I tried to help you just pushed me away telling me I was just making it worse and that as a parent was really difficult to hear. I just didn’t really know where to turn. It was hard but you just have no choice other than to carry on and do your best to be ‘mum’.”
What is the hardest part of having that child be an adult and going through TSW?
“Not living with you. Being over an hour away is hard because I can’t look after you and do the simple things like accompany you to the doctors. I can’t sort out your washing when your hands are bad and cook you nice healthy meals. I can’t check you’re eating properly and you’re taking all your medication that you’re supposed to be taking at the right times of the day. Having to see your progress on your blog and not in person is really difficult. Hearing you cry down the phone and not being able to give you a hug and tell you you’re beautiful makes me feel helpless. Thank goodness for social media. At least we can speak every day and keep in touch constantly. I’m just happy that now you’ve grown up you aren’t angry with me anymore and you actually let me be a part of your journey back to health. I’m so proud of you and all you’ve achieved.”
I love my mum with all my heart and I honestly don’t know what I’d do without her. I have utter respect for all of you having to deal with our angry, unhappy selves, and having to watch someone you love suffer every day.
All you mum’s are incredible and although sometimes we don’t show it, we really do appreciate everything you do!
HERE’S TO THE MUM’S!
HAPPY MOTHER’S DAY!
Aviary Photo_130709122485375378
xxxxx

LINE AND HEART

Does accepting your limits mean you’re giving up?

Aviary Photo_130698484032423236

recently had a car accident where by I fainted at the wheel and crashed into the central reservation on the motorway. Don’t panic, I’m ok and no-one was hurt. I was lucky enough to have been stuck in traffic (I never thought I’d ever say that) and so I was only going about 25mph when I crashed. My car is pretty dead but who cares now that I have temporarily lost my right to drive on the roads as a result of me being redeemed medically unfit to drive. Woop woop! I guess I’ve saved myself some money on the car repairs! Every cloud and all that… It was a pretty big wake up call for me. I have spent so long pretending I’m fine. Putting on this mask of health but in actual fact, sometimes you just seriously need to accept your limits! So does excepting your limits mean you’re giving up? It’s a weird little question really. I’ve always been one to value determination and passion above all really. If you are determined to do something, you’ll do it no matter what. I mean just look at that Kenyan lady who recently collapsed 50 meters from the end of a marathon in Austin Texas and literally crawled to the finish line declining any help in order to not be disqualified.

Aviary Photo_130698494944585806

Her passion and determination got her to her finish line but at what consequence to her health? I am by all means not suggesting she isn’t inspiring but is the lesson of “You carry on no matter what” really what we want to be living by? I like the ‘carry on’ part, it’s just the ‘no matter what’ part I have a tad bit of an issue with.

I have grown up being on the stage. If it wasn’t dancing, it was acting, if it wasn’t acting it was singing and if it wasn’t any of those things it was rigging the lights. Now you may be wondering where I’m going with this as it’s a complete change in topic but stay with me, it does have relevance. I have, since before I can remember, been told “THE SHOW MUST GO ON”. It doesn’t matter what happens when you’re on stage you carry on, improvise even but don’t draw attention to the fact that things haven’t gone to plan.

I do remember a time actually when I tried to do this during a performance but epically failed. I was doing a performance on crime and punishment in the 16th Century at ‘The Tudor Museum’ I used to work at, teaching history through drama (before TSW ruined that for me. Sad times. It was my dream job). I was moving ‘The Stocks and pillories’ to the back of the stage and accidently slipped and sliced the top of my finger open on a sharp bit of metal. There was blood pouring out everywhere but I thought, act cool, stay calm and find the quickest excuse to leave the stage and grab a fellow colleague to take over. As I went to do this however, I went seriously light headed but I couldn’t possibly just go light headed, oh no I had to go and faint, but I couldn’t possibly just faint I had to go and fall off the stage, but I couldn’t possibly just have fallen off the stage, I had to go and wack my head off the original 16th century cobble stones and knock myself clean out. I came around to my audience gasping, a black eye and paramedics trying to usher me into an ambulance insisting I go to A&E straight away. So there I found myself lying on a hospital bed dressed in full on Tudor attire awaiting a pair of free hands to help me get out of my enormous dress and four under layers that included a huge bum pad! I mean, if that’s not awkward I don’t know what is! 0__0

Aviary Photo_130698480498283773

Anyhow, back on topic… Where was I? Ahhh yes, accepting your limits. Ever since I started suffering from depression and TSW I have lived life as though it is a performance, and no matter how you feel ‘THE SHOW MUST GO ON’. Act like there’s nothing wrong, hide your pains, your illness and get on with life but after my car accident it made me realise that pretending everything is ok isn’t the answer. Acknowledging the fact that your temporarily the under study and not the performer for a while is all part of getting better. Maybe just admitting that there are certain things you can’t do, whether that be work anymore, or go out anymore, or even drive anymore isn’t a sign of giving up at all and maybe it’s a sign of moving forward. Some may see it as weakness but I know now that it takes ultimate strength to admit you’re not quite as independent as you used to be and I think all you people out there who have already accepted they aren’t quite as ‘capable’ as they used to be are extremely brave and my ultimate inspiration.

To play a character is easy, but it takes true courage and skill to stop the performance and be your true self. So it’s official, from this moment onwards I’m going to slow down and take it easy, concentrate on getting better and rock the hell out of being a young INCAPABLE woman. 😀  I guess being looked after isn’t all that bad. Everyone loves being brought a cup of Yorkshire tea in bed when their ill right? 🙂 Be strong, be you.

Peace out.

Loves.xxx

Amy-Lou ❤

Aviary Photo_130698481135019555

LINE AND HEART

TO COVER UP OR NOT COVER UP, THAT IS THE QUESTION…

Aviary Photo_130685581622610518

Hello again my eczema warriors. I say ‘warriors’ because I really do believe it take a true warrior to battle eczema, or any other skin condition for that matter that’s physically on show. It’s hard enough for someone with beautiful skin to accept their appearance so it’s 10 times worse for us scabby, weepy, bloody, patchy, itchy lot to be happy with the way that we look. Everyone has their own insecurities and eczema has always been one of mine ever since I started high school in the year 2000 but recently it’s become less of an insecurity and more so part of my lifestyle.

I’ve recently had some feedback on my blog from an honest but unhappy lady suggesting that by me posting about ways I cover up my eczema, I’m actually sending out a negative message to all eczema sufferers  that you should cover up your eczema because it’s something you shouldn’t have on show in public.  This is something I never even considered to be an issue. My blog isn’t about that at all, it’s about being proud of who you are regardless which is why I felt I needed to write this post. She said people shouldn’t cover up their eczema because they have nothing to hide which got me thinking. Is covering up your eczema with make-up such a big of a deal? If someone woke up with a big angry red pimple on their face one morning and reached for that handy concealer to cover it up would they get the same reaction? Would they be told they shouldn’t wear concealer because they have nothing to hide or would it just be brushed under that make-up carpet and just accepted as an every day occurrence in most people’s lives? There are many beauty bloggers out there who youtube tutorials on how to cover up acne and their comments are all positive so what makes that any different to covering up eczema? 

I wear make-up for the same reason every other make-up wearer does, because I like to. I like putting on my mask, it makes me feel good. I like trying out new make-up products and I like getting excited over new releases. I like getting dressed up for a night out and slapping on that red lippy. I like changing my make-up style according to my outfit. It mixes things up a bit and I’ve always been someone who gets bored quite easily. I don’t specifically wear make-up to solely cover up my eczema, eczema just happens to be there and so it makes wearing make-up harder to do. If I had perfect skin, I would still wear make-up. Don’t get me wrong, I don’t wear it all the time because it would irritate my skin too much to wear it every day so going out of the house with patchy dry skin is also a frequent occurrence in my life.

So why all of a sudden should one feel as though they have to go out with no make-up on and have their eczema on show in order to prove they are not ashamed of it? Why should you have to prove to people that you embrace having eczema? Surely by you not caring what people think is proof of you being proud of your skin, which also means not feeling the need to prove to strangers that you don’t care.

If you’re not usually a make-up wearer or never have been then I think that’s great, everyone is different and that’s the beauty of individuality. If we were all the same the world would be a very boring place and there would certainly be less choice for a singleton. If you didn’t like the look of someone, you would be screwed because we would all look the same and therefore you’d be alone forever. Oh…

I am proud of my eczema. I am proud of every red patch, every open wound, every swollen body part, every scab, every bit of dry skin, every scar, every pain, every itch, and every clump of hair that falls out when I wash it because being able to see all of that reminds me of how strong I am as a person and how I’m successfully getting through the most difficult time of my life. My eczema has shaped me as a person, and regardless of how it may look, I’ve come out on top.

Whether you’re young, or old, or man, or woman, whether you’re part of an LGBT community or suffer from any form of physical or mental disability or illness, whether you’re black or white, or rich or poor we all have one thing in common… Individuality.

There is a quote I live my life by and it’s a quote very dear to my heart…

“Be who you are, and say what you feel because those that mind don’t matter and those that matter don’t mind”

Aviary Photo_130685581751157086

Aviary Photo_130685581898945193

Aviary Photo_130685582044223082

Aviary Photo_130685581498306133

Aviary Photo_130685582374715405

Aviary Photo_130685582181061928

Aviary Photo_130685580956104013

Aviary Photo_130685581357992402

Aviary Photo_130685581218819456

Be you, love you, and live your life for you.

A message I felt needed to be said. 🙂

Peace out you beautiful individuals! Stay strong and stay positive.

Loves.xxx

amy-louise

LINE AND HEART

OATS OATS OATS… Why I love Oats, and why you should to!

UPDATED OAT1

Oats are great! Especially for those tired mornings when you need to fill a hole and get a gradual energy boost that will keep you going for the day. With our bodies being exhausted from fighting this steroid addiction so hard, an energy boost is definitely what we could do with if you’re one of the lucky ones who are still able to work. If you’re not one of these people who are able to work due to being Homewood bound (love that film by the way, brings a tear to my eye every time) then you should love oats just as much as we do because you don’t just have to eat them to feel the benefits!

Oats really are underdog of cereals! When you’re weighing up your breakfast options in the cereal aisle ‘Crunchy Nut Cornflakes’ will win over ‘Quaker Oats’ every time! Am I right?
So why should you reach for the Quaker Oats instead of all other tasty cereals chilling on the shelves? Well, Oats are much more versatile! You certainly wouldn’t benefit from bathing in Cornflakes or Cocopops but oats are perfect for that purpose. Killing 2 birds with one stone, not only is it a tasty treat but also it’s a great for bathing in. If only they knew this back in the Victorian workhouse days, poor Oliver Twist wouldn’t have had to ask for more if only the governors were aware they could have saved money on soap if only they used the ‘gruel’ to bathe their dirty orphan children in! Times have changed.

Having an oat bath when feeling itchy and irritant will certainly soothe those angry patches or in most of our cases, our whole bodies. Itchy skin has a high PH level and the oatmeal helps bring it back down which in turn relieves your itch. The oats also work as a natural moisturiser for the skin which is great for people also doing ‘moisture withdrawal’. With it being a natural moisturiser this means that where water itself dehydrates your skin, the oats lock in moisture helping your skin long term. The chemical components found in the oatmeal work as a cleanser which absorb oil, dirt and odour. These chemicals known as avenanthramides and phenois work as an anti-inflammatory so it’s also perfect for those swollen limbs and puffy faces. So what should you scrub yourself with then? OATS OF COURSE! 😀

Now, oat baths are really easy to do but can go horribly wrong if you don’t know how to do them, as I found out. The first time I made myself an oat bath it was disastrous! After being told to bath in it, I naturally took it literally and poured oats into the bath water. I must say, it was a little weird when I got in it to have oats floating about left, right and centre but it tasted lovely if I accidently got any in my mouth so I thought, yes! This is the best thing ever! That is until I had to empty the bath tub. It was that moment I realised that I’d probably got it all wrong. Having to sieve out such a mass amount of oats was a tragic moment and certainly an epic fail. It was at that point I thought it was probably best to look up how you do it which I now don’t quite understand why I didn’t do this in the first place.

So now I know how to do it I thought I’d provide you with a tutorial so you don’t have the same issue as I did. 
UPDATED OAT 2
OAT 3
1. Get an old pair of tights that you have jamming in your draws or in my case, a pair that was suffering from extreme vile pattern syndrome. I have no use for leopard tights and never have so I honestly have no idea why I thought purchasing them was a good idea. I question my ideas sometimes.
2. Moving on, get your good old Quaker Oats, take a few handfuls and put them into one of the legs.
3. Tie the legs around the head of the tap so that when the water runs it runs through the oats
4. When running the water, run it at a lukewarm temperature because you don’t want to cook the oats. A hot bath will also irritate the skin a little but it really does depend on the individual as to how hot you can handle.
5. The water will be a lovely cloudy colour that resembles the colour of sick but we have to do what we have to do don’t we.
6. Carefully take the tights off the tap being careful not to let any oats fall out into the tub and tie a knot in the top of the tights. Leave it bobbing around in the bath and use as a sponge to really scrub those wounds.
7. Bathe for around 10-15 minutes
8. Get out feeling refreshed and relieved.
9. Throw away the tights and the used oats.
10. Bob’s your Uncle, Fannie’s your Aunt. You’ve successfully achieved an oat bath!
I’m sure there are other ways of doing it but that was just my version so by all means let me know if you have any other suggestions or if you’ve had a different experience. Leave your comments below so we can all share advice 
All in all, I’d say…
LOVE OATS WRITING
OAT ME
Loves.xx
Amy-Lou ❤
LINE AND HEART

HOW 2014 HAS SHAPED MY OUTLOOK FOR THE NEW YEAR…

JAN 06

Wow! 6 days into the new year already. I’d say “you can’t believe where the time has gone can you?” but I fear I would sound like my nan so we’ll leave that one out, even though it’s what we’re all thinking. New year, new start is what is being said on every social media site possible by all sorts of people and there are talks of “Time to start the gym again and get fit” or “No more junk food, it’s time for some healthy eating” amongst my best friends. I mean, it’s pretty clear this new found attitude to life will start to slip after January. If people really kept it up we wouldn’t see the same repetitive quotes every year because there would be no need to say them if you’re already gyming it up and living that healthy lifestyle everyone strives for.

I looked at my resolutions from last year which certainly mimicked all of the above with the slight difference of ‘have more fun’. Have I achieved any of this? Well, that is debatable. I didn’t attend any gym but I did work out from home for 1 month out of the 12 months which counts right? I did also start to eat more vegetables, but being a pescetarian that was pretty much standard anyway, regardless of that fact I’d say it still counts though? I did, however, turn to the takeaways pretty quickly though which became slightly worrying when my Pizzahut answered the phone with the line “Hello Amy-Lou, would you like the usual?”. You know you’ve eaten too much pizza when the pizza hut staff almost become your friends! Awkward.

As for the third resolution of ‘have more fun’, I can’t say I achieved this to the extent of my intentions. I had big plans for the summer especially. At the start of the year I booked off the whole of the last month in July and the whole of August with the intention of really enjoying myself. Maybe attend some festivals, go out on day trips, do a bit of travelling, spend time with friends drinking cocktails and generally having ‘more fun’ but what I actually ended up doing was the complete opposite. My idea of ‘having fun’ has now completely changed which I don’t think is necessary a bad thing at all. I now appreciate the little things in life. It’s not all about big gestures and day trips. I appreciate a good sofa day with my partner and friends more than I ever did before and I can now say that I can see what all the fuss is about! Especially as I have discovered NETFLIX! This has taken over my life.

Tuesday the 13th of May is where my life changed completely and suddenly those New Year’s resolutions I’d made just over 4 months before became completely irrelevant. The 13th of May marks the day where I stopped steroids completely and started my somewhat turbulent journey of Topical Steroid Withdrawal. It has taught me a lot and has had a weirdly positive effect on my life. It may have been a difficult 7 months so far but the impact it has had on me as an individual has been insane! I have learnt that life isn’t all about looking as beautiful as possible because my existence doesn’t depend on how much other people find me attractive. I’ve learnt that positivity is imperative when recovering from a topical steroid addiction. I’ve learnt not to be so quick to judge because behind everyone’s smile there is always some sort of pain and suffering that you are unaware of, everyone has their own difficult journey. I’ve learnt that everyone of us is stronger than we think, our bodies are wonderful things that can handle anything and I’ve learnt that TSW isn’t just something you just go through, it’s a whole life style change that not only effects the person going through it but also the people supporting you. Respecting them and understanding their point of view is certainly the key to a smooth running recovery. It’s hard to see an out siders point of view when TSW seems to completely devour and strangulate any thoughts regarding other people and makes you extremely self-involved which can be extremely dangerous if you let it take over you. How you handle things is a choice that only you can make. You can either let it beat you or you can tell it where to go and beat the hell out of it. Don’t let it run your life. This is your life and this steroid addiction doesn’t have the right to tell you how to run it, take back the control. Just by putting a smile on your face through the hard times and being positive on even the darkest of days means you’re already half way there! 😉 Stay strong peeps! Together we will beat this, one day at a time. Loves.xx Amy-Lou ❤
LINE AND HEART

So, you want to know about my atopic dermatitis right…

I have suffered with eczema for 20 years, technically I started out with just a mild itch in the creases of my arms and on the back of my legs and as I’ve gradually got older it’s got worse and worse and now I’m faced with severe full body eczema. It is literally from my scalp to my ankles with the only place I don’t have it being my tiny feet, I’d prefer not to speak too soon though. I have recently found out that the reason for this is something called ‘topical steroid addiction’, something the doctors like to leave out when providing you with the magical steroid cream. Please go and take a look at https://didsomeonesaycheese.wordpress.com/the-facts-what-is-topical-steroid-withdrawal/ to find out what a topical steroid addiction actually is and how to solve it.

I do like to refer to it as my ‘itchy nightmare’ but by suggesting it is a nightmare I would be suggesting I’ve had sleep which is something that seriously does not fit into my itchy schedule. I have averaged about 6 hours sleep in the last 3 days and I am seriously starting to feel like an exhausted first time mum having to deal with a screaming new born every time she tries to get her head down! Except there is no screaming baby to go and rock to sleep, there’s just my screaming body crying out for my nails to scratch it until it bleeds and burns. With eczema this severe, I’m sure you’d all agree, there is no such thing as ‘relief’. For all you people out there that have to live with us I really do feel for you! It must be such a strange site to see someone literally tearing off their skin in a state of what I can only imagine looks like we are being possessed! If we were born in the 16th Century they’d think we had the devil inside us and would no doubt burn us at the stake!! Am I getting too morbid here!? I apologise, I have a tendency to get carried away with historical facts.

I often find myself on the floor in an upright foetal position in a constant scratching frenzy and wondering, is this what it would feel like to have fleas!? :S I even sometimes find my Cat staring at me in a judgemental manner and you know you’ve always hit a low point in life when you get judged by any animal! It’s an awkward moment for both parties involved but I think you’ll find, whilst following my blog, that my life very much revolves around awkward moments! They do make great stories as you get older though and if there is one thing I have taken from living with eczema and having to deal with the dip in self-confidence, the not wanting to go out, the sleepless nights, the agonising pain and the continuous dry red skin, it would be to just not take life so seriously. 🙂 A sense of humour is imperative when coping with eczema and so for my first entry on this page I will leave you with this… It is a saying that my nan used to say to me when I’d embarrass myself one way or another, I feel it relates perfectly to this: “If we don’t laugh at ourselves we’d just cry, and where exactly is the fun in that” 😀

Loves.xx

amy-louise

LINE AND HEART

12 thoughts on “LIFE’S AN ITCH…”

  1. Amy-Lou,

    Your style of journaling is so refreshing! It’s sincere, and funny… I kinda feel like I know you already just through your words! You have such a positive take so far into your journey and I admire that so much! Would you like to write a blog entry on my most recent blog post about depression? I think your positive outlook on this whole process could really be a great source of inspiration! You can check it out in my page and email me if you’d like to participate ❤ Wishing you speedy, happy healing 🙂

    Take Care,
    Jen

  2. Amy-Lou!

    Sorry if this is a repeat comment, I’m not sure if my first one went through, had some issues on my end lol. I just wanted to say that I love your journaling style, it’s so sincere and comical (we need to laugh at ourselves during this struggle). I kinda feel like I already know you just through your words! You have such a positive outlook on this whole ordeal that is TSW, and it’s really refreshing to see that! I have a recent blog post about depression, and if you’d like, I would love to get a blog entry from you on how you keep depression at bay. Your take on this process is so optimistic, and I think it could be a great source of inspiration to others! If you are interested just check out the post and you can email me your response @ eczema.holistic.healing@gmail.com ! 🙂

    Wishing you speedy and happy healing ❤
    Take Care,
    Jen

  3. you are wonderful 🙂

    I have also been an eczema sufferer since I was a child. Again, also on back of legs, arms and back of neck. Then i started having eczema on my face during my teens up until uni… still in uni now. But I spent a year abroad in tropical weather and it all went. It came back when I went back into uni (I think it’s all the stress, lack of sleep and dry air in UK that does it no good). my face is all clear now, but I do have to look after it – mainly using minimal products (and non steroids of course, only hydrocortisone if it begins to come back)

    Oats is definitely a good use I agree 🙂

    You are beautifully and wonderfully made. And I thank you for this blog of yours. Will be sure to keep up with it.

  4. Hi Amy!

    I found your this through an article on the daily mail, and have since spent some time reading through your blog. It’s great. Truth is, I never even considered some topics (especially social/familial/psychological impact) you raise here, so utmost credit to you for doing this, and for raising awareness both about eczema and TSW (which, BTW, I had no idea was even a condition and was intrigued by your ‘the facts’ section).

    Fact is, I don’t have much to offer by way of experience in advise or products. However: DMSO is a compound that readily permeates the skin when used topically; it’s often used as a drug delivery mechanism. It has the potential to be used either alone or in conjunction with another medication or product you use as a result. For example, a quick Google search for ‘DMSO eczema’ comes up with a page recommending it with turmeric. Obviously ask your doctor and do some research first, but it could well be useful. Oh, also, avoid Sodium Lauryl Sulfate if possible.

    You may well have heard of Alitretinoin, presumably you would have to ask your doctor about it but I first came across it a few years ago whilst doing work on an essay for my degree. May help your hands. Here are a few relevant articles.
    https://www.nice.org.uk/guidance/ta177
    http://www.ncbi.nlm.nih.gov/pubmed/20131924

    Finally, just FYI, you’re beautiful. Genuinely, it was the first thing I thought seeing your picture on DM. Don’t let eczema confuse that.

    I hope something helps, good luck!

  5. My son has enzema rigt from birth which we notice once we starts giving him non diary product. It was traced later after a few years to multiple food allergy. Some food (as well as exam stress) will trigger his enzema (probably about 50% – 70% of your photo). We caught it very young as he had difficulty breathing and requires a surgical to clear out his nose mucus and starting on immunotheraphy and we his food in control since young. So to know if your ecezma is trigger by food keeps a daily logbook of every meal you eats,. Food allergy trigger by food lasted around 4 days to have it flush out of your body. Or start off with extremely plain porridge with boilt vegetable (one type of source) d one type of meat and start by elimination/addition.
    Or take the easy way out, go for a food allergy test at the clinic and test on thse common food and sources that you normally eat.

  6. Hi Amy Lou ,

    So good to hear your story I am currently being seen by the dermatologist but I don’t have much hope to be honest.
    And I too have been seen by a doctor with a hearing problem.
    It is so frustrating surely we are the patient and they are the doctor so the most important thing is to help us and listen to us.
    My GP reckons other doctors have a joke about dermatologists, they say they have patients who never heal. Erm NOT FUNNY!!!

    The constant itching the flaky skin the skin flakes on your lovely black top!
    IVe been called lizard skin, as a joke ha ha funny!!!
    The sleepless nights, the depression.
    The toll it takes on my two little boys and my missus. As I don’t hVe a lot of energy and I am constantly irritated and agitated due to the itching and burning sensation on my face, chest and arms.
    I feel your pain and I hope they do help you.
    I have been going to the docs and dermatologists for over a year now and haven’t gotten far with them. The next option they said is light therapy and after that cancer treatment!! God help me.

    Wish you all the best I have never replied to anything online but I felt I had to as I can relate to it all.

    Best of luck x

    1. haha ive been called lizard skin too tom! i’ve had eczema my whole life and have been battling it since i was a baby. the docs said there was no cure and that it was useless for me. I basically always had patches,scabs,wounds,cuts in every part of my body. except my face of course. the amount of times ive bled and then having really dark scars all over. aww man. I have never had an oats bath so fingers crossed it will be a remedy. Im also on steroid creams and find that they only help that much. Do share what else you can recommend! Its nice to find someone who i can relate to. Not many people in singapore knows my pain.

  7. What i do not realize is in fact how you’re now not really much more neatly-favored than you may be now. You’re so intelligent. You know thus considerably in relation to this matter, made me for my part imagine it from so many various angles. Its like women and men are not fascinated unless it’s one thing to do with Girl gaga! Your own stuffs nice. At all times care for it up!

  8. I’ve loved reading your blog Amy, it’s really inspiring! You have clearly come along way with your eczema! Both myself and my 8 month old son have eczema, it’s tough but we are managing it as best we can at the moment. Keeping positive is key and that’s exactly how I feel after reading your posts! Thank you. Lucy and Jacob X

  9. When I read this story I realized just how similar it was to my eczema.
    I was so desperate that I tried every thick, smelly cream and goopy ointment I could get my hands on. Nothing really worked permanently and the eczema always came back.
    I knew that there had to be another way. I searched long and hard and finally came across some simple natural remedies that finally made my embarrassing eczema disappear for good…to the amazement of my doctor.

    In fact, you might want to check out this article, it really helped me a lot:
    http://www.journalofnaturalhealth.com/eczemaremedy

    Hope it helps anyone reading this!

    Laura Davis
    lauradavis3@gmx.com
    http://www.journalofnaturalhealth.com/eczemaremedy

  10. I can relate to this. I’m so happy that I’ve found other people who have the same problem as me! I always thought I was weird for having this since no one else has it at my school, and although they weren’t as bad as having them on my face or anything (they disappeared after around grade 2-3) they constantly itched. When some on my feet disappeared I marveled at the pale but smooth skin while thinking “wow, it does get better.”

    Since they’re only on my feet, hands, and on the back of my knees—no one has really noticed them. Also yeah, the lotion/cream was always terrible for me (not sure if anyone else had the same problem) as they always made my skin even more itchy, red, and irritable so I eventually stopped using them.

    Right now I’m 14 and they’ve gotten better, though they’re still moving around. Kinda hoping they’ll fade when I’m older ’cause I remember when I used to scratch them to the point where they’d bleed and leak all over the place. Taking socks off was a nightmare.

    But enough about me—let’s focus on other people who’ve had this devil-spawn of a skin condition. There is hope, as proved by you, Amy Lou. Even if medication doesn’t work, even if people tell you it’s not possible, even if people are bullying you—you can pull through and find your own solution. There’s also the option of research or simply asking for help. If the eczema doesn’t disappear then endure it until it does, or try to make it less.. Bad.

    After 4 paragraphs of randomness, I’ve run out of things to say (as I don’t usually leave comments). So for now, thank you, Amy Lou for inspiring me and so many other people with your story and experiences. I sincerely hope that everyone with this problem can pull through and find a way to manage it to the point where you’re at least decently satisfied with it.

    Goodbye and take care~!

  11. I love this Blog. I have a doctors appointment on thursday and I can’t wait to begin my steriod free journey. The first time i went to discuss this i found myself a blithering wreck because my gp asked me ‘how are you doing?’ Apparently that was enough to enduce tears, i hadnt ever taken into account the mental strain eczema has. My problem areas are my arms legs and my worst is my hands to the point where my fingers dont bend when it is inflammed and infected (which is more often than not) but i would like to thank you for this blog sincerely if not for this blog i wouldnt know steriods are the devil.

    Thursday is the beginning of the rest of my life.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: