MOANathron: My first ever experience at the dermatologist.

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-Lou ❤

NEW FAVOURITE: Just a beautiful necklace? Oh no, this little gem is so much more. <3

So basically I’ve purchased this beautiful necklace from ‘Aubergine Fox’ and I just love it so much I had to share it with you lovely lot.

Aviary Photo_130706523729125886

This necklace isn’t just any old ‘fashion necklace’ it’s a triangular shaped rough cut amethyst which is something rather special. Anyone who personally knows me would almost certainly say that me even considering purchasing jewellery with ‘healing qualities’ would be as probable as catching a tan in the north pole but I thought I’d make an exception this time because it was just so beautiful! I guess it gave me an excuse to buy it! 

Aviary Photo_130706521155734375

So why is this piece so special?
“Amethyst is a meditative and calming stone which works in the emotional, spiritual, and physical planes to provide calm, balance, patience, and peace.”
There’s such a long list of things people use amethyst for and I really do feel that when it comes to healing stones it depends on a person’s personal journey and eventual goal to determine which aspects of the stones capabilities they use.

Aviary Photo_130710428273202278

I love the whole calming qualities this stone brings and the fact that it supposedly brings emotional stability, inner strength and patience which are three very important factors when tackling TSW or getting through any physical and mental disorder. When I get anxious and stressed it makes my skin all flare up and before I know it I’m back in a ball crying and screaming whilst tearing my skin apart so any help with staying calm is much appreciated. Having a little bit of a foot booster with getting back to being emotionally stable is also welcomed into my life with open arms. Anyone suffering with depression will tell you how your emotional state can sometimes seem like a tornado of utter confusion which will inevitably bring on frustration, which makes you stressed, which then makes your skin flare etc… It’s a vicious cycle. As I’ve been tackling TSW for 9 months so far and have a hell of a long way to go patience is key but sometimes it can be difficult to remain that way. So yes, WELCOME to my world little calming stone, you certainly have you’re work cut out for you!

Aviary Photo_130706521520973375

The shape of the necklace to me is just as important as the stone itself. With the triangle being the STRONGEST of all shapes it reminds me to stay strong every time I look down at it. Staying strong may sometimes seem impossible and in moments of weakness this little gem of a necklace has really helped me to stay on track.

Aviary Photo_130706523902148204

So all in all, this necklace has literally become my favourite piece of jewellery. Not only is it beautifully stunning but it will hopefully also give me a helping hand through my difficult journey to rid my skin of topical steroids.

necklace1

You can find other gorgeous pieces of jewellery and beautiful things to decorate your desks with at
aubergine fox
instagram @AUBERGINEFOX on Twitter @AubergineFox or on etsy at auberginefox.etsy.com

Thank you Aubergine Fox. You can add me to your long line of happy customers!
Loves.xxx
Amy-Lou ❤

MOTHERS DAY: Being 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

Does accepting your limits mean you’re giving up?

So I 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