I’ll start again as I did in my 1st blog by saying hello & a massive thank you for taking time to visit my page.
This time I want to write about what life has been like living with eczema & how it has affected me & those around me & always will, as long as I’m a sufferer.
I want to start & say very firmly that I am one of THE happiest & lucky girls on earth & as a whole my life has been wonderful & it still is. This is ALL down to my incredible family & chosen friends, so, they make what I’m going to write about ok! However, I can’t deny at points in the past & even today, eczema makes me down right miserable & emotional. Whether its me who’s affected, my son, my friend’s kids or even strangers!
I want to paint a picture of my life, albeit a shortened & edited version, as much as I can. At some point, I am going to ask my mum to get involved on this page to tell the tale from her point of view too! She is one amazing lady who was, thank goodness, always researching & often knew more about my skin condition than most GPs out there, especially understanding the potential triggers. Its incredible really because at the time when I was born in 1978, the knowledge generally was nowhere near what it is now & of course there was no internet! Yet, a lot of what is now proven to be good, my mum already knew & believed in all those years ago!
So, what are my 1st memories of eczema? Well, I certainly don’t have any baby memories but as a toddler I remember the words ‘don’t scratch sweetheart’ & ‘oh no, you mustn’t scratch!’ – in fact people tell me to this day not to do so! & you know what? It’s one of THE most annoying things to be told & I distinctly remember feeling angry/annoyed/irritated that I was being asked or told not to do something I simply could not help! Of course, I realise now it was always said out of love or concern & they were only trying to help me. I’ll come back to the itchiness later!
I remember countless trips to the GP, each time having them look over me, twisting my arm one way & then the other, rubbing their fingers along my skin all the while never talking to me, just my mum. They never seemed to care that all the rubbing & twisting, pulling up my top etc was hurting as I was so sore! Each time we’d come away with E45 cream or some other greasy cream & some steroid or hydrocortisone creams & something oily to put in the bath. All of which never worked for any length of time.
I have vivid memories of my skin getting so bad that was admitted to hospital on more than one occasion. The longest was for almost a month, which at the age of 8/9 is a long time! Whilst in hospital I had all sorts of bandages & creams applied each & every day including wet wrap bandages that I HATED! They were coltar paste bandages that were a greeny brown sludgy looking bandage & when applied they; 1. Smelt awful & 2. Were SO COLD!!!!! Then when they dried, they felt so tight & stiff they made my limbs ache as I tried to move about. It was horrible.
During the longest stretch in hospital I had to have my school work sent in & went to a special in-house classroom each day. I seem to remember this being quite good fun, but I did miss my friends. One day we got to do some sewing/embroidery & I painstakingly sat for a good hour or so carefully stitching away in my own little world. It wasn’t until I went to raise my work proudly in the air to a nurse that I realised I couldn’t do so…All my hard work had been lovingly sewn to the bandages on my leg!!! Doh! Silly me! I was so upset as it had to be cut free, ruining all my work. Although, looking back they could have chopped my bandage instead of the threads & left my work intact, couldn’t they?! Maybe that was their way of letting me know my work wasn’t that good, ha ha.
Food. Food is another big memory from staying in hospital & how awful it was. It was terribly bland. I have a memory of one meal in particular though, just before tea one day one of my best friends came to visit me. I must point out at this stage that my friend Julie was a vegetarian because she hated the thought of eating animals & she was a proud owner of quite a few pets, including a couple of cute bunny rabbits! You may see where this is heading? Anyway, tea came out, I sat down to eat with Julie by my side for company & started to eat happily believing what I had in front of me was chicken. As I ate, I screwed up my face as I wasn’t keen & politely asked the nurse what it was? ‘Rabbit’ she replied bluntly – the shock around the large table of kids was intense to say the least. Pretty much everyone, including Julie just burst into tears & started shoving their plates away! If I remember rightly, emergency plates of beans on toast were quickly whipped up! Maybe cute little bunnies aren’t quite the best thing to serve up on the children’s ward?!
After leaving hospital, the bandaging continued at home & at school… yup, I used to go dressed like a ‘mummy’ under my uniform! Hospital visits were now weekly, during school hours on Wednesdays. Something else also continued…The itching, the constant blooming itching! Of course, I was all bandaged up, so it only made the situation harder & more frustrating to get to that nasty evil itch!
What to tell you about itching?! Well, unless you’ve had a skin condition with a constant itch, I guess you’ll never know & its hard to put into words. THE worst thing for me is that I find it plays with my mind after so long & I can slowly feel it driving me insane & I don’t say that lightly either. When it’s a bad itch, it’s honestly torture! It drives you to anger at the best of times, never mind if someone tells you not to itch! I can’t tell you the amount of times I’ve cried over an itch – when it’s constant & just won’t leave you alone it’s the worst. You don’t care if you’re going to break your skin & it’s going to bleed & weep & be super sore…all you can think about is stopping it to make it leave you the hell alone! It’s amazing what we can find around our homes that will help eg. Hair brush, sharp bottle tops, tail of my tail comb, hot water (REALLY hot water!) to name few…but still we itch!
I’ll never forget having a boyfriend once that got so annoyed as we watched a movie. I was fidgeting & scratching & he just suddenly told me I was distracting him & could I just stop it & said I was doing his head in! Needless to say, that was our last ever date. In fact, it ended right there & then, without saying a word I got up & walked out. If you can’t take me with my flaws, then you most certainly do not deserve all my good points! Luckily, I’m a strong one & knew I deserved way better, no matter how awful I felt at the time, I just walked, no regrets or looking back! Clearly, he was an idiot!
Interestingly enough, writing about being itchy has set me off being all itchy! Agh! So, I really should stop there I think. I could go on & on about the mental torture, but I’ll say this – If you are watching someone, especially a child, scratching & irritated please PLEASE don’t just tell them to stop. It is practically an impossibility. So instead, encourage them to stop & slow down by helping them, give them a gentle rub or tickle. Tickling is HEAVEN in comparison & probably the good old art of distraction will work wonders too because like I said it’s the mind that is the worst for us itchy scratchy people!
Over the years mum kept me away from things she knew bothered me, kept a spotless home & fed me good home cooked food & my skin was always under control as much as it could be. But still, I used the creams prescribed by the doctors & specialists. I mean why wouldn’t we take their advice? Although, it was my mums ‘gut instinct’ that there was more to it! & boy was she right! There will be more blogs about what she knew & what we are finding out today to be vital information in helping autoimmune diseases including eczema.
Growing up, I was a dance fanatic. In fact, that’s what I did as a profession for many years but more on that another time I’m sure! So, as you can imagine being young, living in leotards & sometimes being bandaged up, I was often a talking point! Then when the bandages were gone as I got older, I still had skin that caused people to ask, ‘what’s wrong with you?!’ or say ‘urgh what’s that?!’ or my favourite *insert eyeroll here* ‘don’t you have any cream for that?!’ usually followed by a myriad of wonderful suggestions of supposed good creams! Sigh!
Of course, wearing leotards made me more exposed than a lot of kids my age with eczema & it made it a very vulnerable place to be. A young girl with skin issues who only wanted ‘normal’ skin & to be pretty! That’s why I loved dancing so very much though, it gave me the chance to just be ME! I got to escape & let go & imagine I was the character I was playing. I lived & breathed dance & they were most definitely the best memories I’ll ever have!
There were also, unfortunately, some of my worst! The lowest point for me was when I was going from audition to audition & I got really very far for a lead part in a west end show, when my skin became an issue. Not for me but for the casting directors. It was delightfully raised mid audition in front of my competition/other hopefuls. I was asked what it was? Was it contagious? It was expressed that it was a big concern for them. They hardly gave me chance to explain that I’d be fine to cover it with makeup like everyone else…but that was it. It all turned frosty & that was that, the end of that audition & dream! It’s at that point in my career that knocked all the confidence out of me & has stuck with me painfully for many many years! I don’t even believe I’ve told this story to many, if any at all?! It’s something I just brushed aside & didn’t speak about!
You see, there are many moments like this that build up that can cause self esteem issues & no matter how many times your friends or family tell you that you still look lovely, you find it really hard to believe. I personally suffer the worst with my eczema on my face, so apparently its right there for people to feel like they can comment on it. If it’s a sunny day I get ‘Oooo you look like you’ve been in that sun too long’ or I hear kids ask their parents ‘what’s wrong with that ladies face mummy?!’ both comments in fairness are purely innocent I know but I’ve had nasty horrible & blatant comments too which I don’t wish to repeat today.
I really don’t want this post to be depressing to read nor do I want or expect any sympathy, after almost 40 years, all I want to do is to raise awareness to this skin condition, which more & more people seem to be suffering with, yet seem to be getting the same old treatment, albeit different versions of creams!
So, there you have it. A little rambling without going in & out of EVERY stored embarrassing, heart-breaking story I’ve ever had, just a few to hopefully help you to understand what its like to grow up with eczema. It’s NOT just a skin complaint you can slap cream on! It is way way more than that. It is as much mental as it is physical & goes far ‘deeper’ than the skin.
I am so very passionate about easing peoples pain, both physically & mentally when it comes to this condition & others like it. It is exactly why I’m writing this today!
Signing off, Mrs Itchy Scratchy
Much love xxx
P.S I realise I didn’t even get into how it affects those around me! Next time…TBC