How I Ditched the Itch, Stopped the Scratching and Overcame the Mental Stigma of Living With Eczema.
Have you ever felt any better than when you are having a scratch? Like a really good one, you know on your back, both legs in the air scraping at both legs at the same time to satisfy the itch? You know it’s gonna end in blood, pain and weeks, no months of healing but you don’t care, right then in that moment it feels sweet, you hit the spot.
5, 10 maybe 20 minutes later you stop, perhaps you naturally stopped after drawing blood, perhaps you were interrupted (by a well meaning family member, and cursed them after the use of the phrase STOP SCRATCHING) either way you know you shouldn’t have done what you just did but it felt so damn good.
There has to be an end to this, I thought, a day when I don’t constantly itch,
a day when I can get up go about my day without finding way to scratch myself in public that doesn’t look like I have some contagious disease,
a day when I’m not a living Hansel and Gretel tale, except it’s not breadcrumbs I leave in my wake wherever I go…
As I’m sat in a coffee shop enjoying the hustle and bustle of life, itch free with clear skin it’s hard to remember the pain of my earlier years. Perhaps I have blocked it out on purpose but I know if I think I can easily recall most of it.
I know I’m a changed person because of this condition but honestly if you want to overcome eczema you have to be willing to change.
My purpose of writing this is to offer hope to those in the throws of the itch scratch cycle, those who can think of nothing but ripping all their skin off to stop it itching and those parents that are at their wits ends trying to help their babies/children who are currently ripping themselves apart.
This condition is manageable, there are ways to get your life back but you have to be willing to change. I want to take you on my journey, I warn you it’s not pretty, but then most of you reading this will relate to that won’t you!
So, I was born with eczema, over 35 years ago now…wow writing that is a shock! I can’t believe how long it took me to figure all this out either!
Now don’t get me wrong I’m not perfect, I still get small flares during times of stress but now it’s literally on the tips of my fingers and soles of my feet.
To me there are two types of eczema (yes I know medically there are many more but really when you break it down to basics there are two) eczema that you are born with so has a genetic link and the other is eczema that is developed later in life although I would say this is only after a few months old.
So mine was there from the start, I came out crispy, I heard my Mum say this I think and it makes me giggle.
Apparently, I was a pretty unwell baby having colic etc but the first thing I remember was the ear aches, ironically not the eczema. I’m sure my mum can tell so many stories of all the stress and work that went in to trying to calm my skin and stop me from scratching myself. Honestly, I don’t remember it, perhaps that is some comfort to the parents out there coping with a small child with eczema, kids are resilient.
So what triggered me to study for years and to decide to devote my working life to helping others with the same condition as me? Keep reading 😉
I remember the trouble my parents went to trying to stop me scratching in bed. I had all kinds of nightwear with mittens that could cover the hands, I got out of these!
This progressed to glove puppets to try and keep me entertained these were taped to my pyjama tops but the urge to scratch is pretty intense and I could get out of everything to just have a scratch.
Even clothing where there was just a hole for the head I could get out of!
This must have driven my parents mental as they would put me to bed with skin that needed to heal and I would wake surrounded by skin with blood stained clothes and fingers.
I can only imagine what this must do to you as a parent, no wonder you stop and nothing to find answers and indeed my parents stopped at nothing.
This wasn’t an easy task back in the 80’s with no internet my parents would scour magazines looking for creams that might help and anywhere that had information.
This also obviously involved numerous visits to the Dr’s because of all the different problems I was having.
I suffered badly with earaches, often in horrendous pain going to school with cotton wool in my ears to try and help. To me looking back this pain was worse than that of the eczema!
I’d constantly have checkups and need my ears cleaning from the buildup of wax.
Later I would learn that wax is the body’s way of protecting the ear so excess wax is a sign of inflammation in the ear! Eczema is also inflammation…funny that.
At about the age of 2 I think dairy was cut out of my diet, alternative milk was hard to come by in the 80’s. My only option was soya or goat’s milk, my parents tried me on goats milk but I was having none of it, so soya it was!
No dairy meant no chocolate, I had my first taste of this sweet nectar at 7 years of age, more on that incident later!
My parents didn’t want me to miss out as a kid and each year I had a chocolate advent calendar (or what I thought was chocolate!) it wasn’t until years later I caught them at it in the kitchen! Every year they opened the calendar, took out all the chocolates (which my dad selflessly ate!) and melted and poured in carob chocolate for me. I had no idea! I imagine so many of you parents reading this do so many things for your kids that they may never know, tell them, it’s important!
I also remember on one of my trips to the Dr’s they offered me, a very young child of about 5, some hope…in fact the best hope I’d ever had. I was told that often eczema just goes away, and this often happens at 7 years old or multiples of 7.
This was magic to my little (cotton wool filled) ears and I clung to this hope, no more eczema after 7, I’ll wake up on my birthday and it will be gone…
Needless to say I was pretty disappointed to wake on my 7th birthday and still be covered in eczema.
I don’t even know if my parents are aware of what I thought would happen, but if I was disproportionately sad on my 7th birthday now you know why!
So what else do I remember from my earlier years, let's see;
kids not wanting to hold my hand,
not being able to join in like other kids,
not being able to have my face painted at parties,
nor bounce on bouncy castles without coming out in a flare,
no to eating the brightly coloured party food at my friends birthdays,
no to taking a party bag home at the end of it,
not being able to sit with the other kids on sports day, I needed to be in the shade and sat on something cotton,
all my white school uniform going yellow from all the creams,
the bath tub going yellow from all the oils and creams I needed to soak in,
it being a mission if we went away cotton bedding had to come with us duvet pillow etc,
having different school meals to my friends ,
the stress at exam time of not knowing whether I would be able to hold my pen because of the cuts all over my hands ,
wondering if I would ever have a boyfriend cause who would want a scaly girlfriend ,
being upset that makeup just made my dry skin look so much worse not like anything in those magazines ,
not being able to walk properly because of the 2” cuts on the soles of my feet ,
dreading a drastic change in temperature because that would mean my skin would go nuts ,
the pain of day to day tasks like dressing, which is pretty difficult when you can’t bend your fingers ,
I could go on...
But, you know what, looking back all I see is that I have loving parents who adjusted so many things in my life so that I could do as much as possible.
My mum would proactively get involved with school to ensure that they knew eczema wasn’t contagious and that kids could hold my hand, I’m pretty sure they talked to parents organising parties to make sure there was food I could eat, they spent time making sure I could participate with as much as possible and for this I am truly grateful.
Now I look back I am so thankful that I was one of the only kids who didn’t grow up with sugar laden food, plied with E numbers and additives. Funny how life works eh.
Despite all the efforts of my parents, my eczema was still bad, dairy had been cut out completely, for many years and multiple creams had been tried.
This still wasn’t getting to the root of my eczema though, with all my illnesses as a child I had taken so many antibiotics this often happens in people with eczema.
At about 7 or 8 I developed warts on my hands, common in most children but most children don’t have hundreds on their hands, they might get like 1 or 2, I had hundreds…
These warts were all over my hands, again this was a trip to the GP and referral to a specialist.
We got to the specialist’s office and after chatting for a few minutes he took out a flask, he took the lid off and it steamed…
I though ooh maybe it’s hot chocolate and that’s the medicine to help get rid of the warts (bless my little child mind!).
Anyway, most of you will have guessed it wasn’t hot chocolate but liquid nitrogen.
He took a cotton bud and without saying anything dipped it in the liquid nitrogen and put the cotton bud on one of my warts, I SCREAMED.
If you have every had this done you will know how painful it is, my parents were beside themselves, he managed to do about 7 I think before they called a halt to the whole thing as I just continued to scream.
A small dent in the 100+ all over my hands.
However, don’t be too sad, remember the chocolate incident I spoke of earlier, well, I got my first ever taste of chocolate that day, I got a packet of smarties for being so good, nothing has ever tasted as sweet! Every cloud and all that…
A few years later, just when I was about to start senior school the warts came back, not just on my hands but all over my body.
They were in my hair, in my mouth, all over my legs, arms, face, hands, torso etc…
1000’s of them.
Not great timing really. Keen not to repeat the previous treatment, my Mum set about finding an alternative treatment.
This was when she discovered Homeopathy, I went to see a homeopath for a couple of years, gradually the warts shrank, fell off and disappeared. Luckily, I am a pretty strong character, so I held my own during those years at school!
Those of you who know homeopathy know it treats the whole person, so my remedies were specific to me and not just treating the warts, but as a result of the treatments my eczema improved massively too.
This was really my first introduction to alternative/holistic/natural (call it what you will) medicine. Thanks to my Mum for this first introduction!
Of course, when you get to being an older teenager you want your freedom and don’t really look after your health as much as you should, you are invincible after all!
I would go out at the weekends with friends have some or a lot of drinks and not eat as healthily as my body needed me to.
As a result my skin suffered, I was managing it with creams, which is like just painting over a cracked wall and hoping that the cracks don’t show again.
My health took a massive downwards turn, I started to suffer with tonsillitis about once every couple of months, after about a year of this and a gazillion more antibiotics I went down the route of getting them removed.
This solved the issue (or so I thought!)
Then I started to get urinary tract infections continuously.
It got to the point that I couldn’t get into work because I couldn’t get off the toilet.
I tried over the counter treatments but it just came back a day later.
I just didn’t understand what was going on.
At this time my Mum was running an eczema support group in Derby, and she organised guest speakers for the meetings. One week she had a kinesiologist come to talk.
I’d never heard of it before and was enthralled by what she said. I booked an appointment to go and see her. On my first appointment she was able to identify that I probably had leaky gut.
For those of you that aren’t aware, this is where your small intestines become a bit leaky, holes start appearing big enough to get food molecules passing back into the blood stream and causing, yes, you guessed it an immune response and more inflammation.
This is quite common in people who have taken multiple antibiotics, i.e. me.
A sign of leaky gut is when you seem to be intolerant to more and more foods…you find yourself saying I used to be able to eat that now I can’t. I get a stomach upset or diarrhoea. Or in my case I got anaphalaxis type reactions to fruit, yes fruit. My tongue, mouth and lips would swell if I ate certain fruits.
Doesn’t sound logical does it, food with all that goodness in and my body was rejecting it! I had to do something, I knew (even back then) that I would be able to reverse this problem.
So back to the kinesiologist, we worked together and started to heal my gut and things started to change.
I changed my diet a bit too and my symptoms got a bit better, enough to bear and get me back to work. Phew!
I should have pursued things further back then, but I didn’t, I got back to my “normal” and went back to eating how I always ate, doing what I always did etc. So nothing drastically improved after that.
Fast forward a few years and in the last decade I have dealt with abnormal smear tests and breast lumps, anxiety, tiredness and lethargy.
Many of you reading this may have been on a similar journey, we accept these things that occur and don’t link them together, why would we, doctors deal with one symptom as a time, they don’t have the time to sit and have a good chat, find out all the health issues going one before deciding on a course of action.
They do a good job with the constraints they are under, I hear so many parents complaining about their GP and how they don’t get the service they need for their child with eczema.
The GP can only follow the protocol that is laid down for them.
Unfortunately for people with eczema this protocol will never get to the root cause so you will always just be repainting over the cracks, until one day that crack underneath gets so big the wall crumbles.
I see so many people online going through a seemingly new problem, TSW (Topical Steroid Withdrawal) or RSS (Red Skin Syndrome). This is where the eczema (or any other condition to be honest) has been treated with steroid creams for years and years and as the weak one stopped working a stronger one is used until the strongest one no longer works…
then what can the doctor do…not a lot...
These people are left to either go cold turkey and suffer the withdrawal or go on more serious drugs, oral steroid, immune suppressants etc.
Still trying to repaint the wall that has crumbled. When what you need is to rebuild the wall…
Fortunately, I didn’t get to this point but I tapered off the steroids in my 20’s and started studying nutrition, biomedicine and naturopathy with a view to fixing myself and building my walls back up.
Now as I’m sat here finishing this on a plane journey to San Diego to a conference organised by my business coach. I’m itch free, I have a tiny pot of cream with me (those of you with severe eczema will know how many you normally have to carry with you!) and at 7 hours into my journey I don’t feel like my skin is as dry as a bone.
For me I was able to piece so many things together over my years at college, I understood my own health journey, I was able to put it all together and understand what was going on with me. What had led to all these seemingly unconnected health issues for myself.
HINT: They weren’t unconnected at all, they were totally connected, I just didn’t understand how.
It seems so obvious to me now, all my life my body has been shouting at me, literally shouting and I chose to shut it up with steroid creams, medication and sheer ignorance.
Any symptom anyone has is a sign from the body that something is up, now sometimes we are lucky enough and even if we do nothing the symptom goes away and we get back to normal.
For many this is not the case, a new symptom appears a bit more irritating than the first one, the body, in its infinite wisdom, has decided to change its method of communication with us. Perhaps we might pay attention to a different noise?
So, for me my eczema was a sign I had inflammation, this was managed with creams, supressing my body’s way of eliminating toxins. This then drove more inflammation, my ears became more inflamed, this was dealt with by fitting grommets in my ears (twice!)
Needless to say that didn’t solve my inflammation, in my ears it did but now my body needed to get my attention another way as I still hadn’t dealt with the root cause.
So now it sent the inflammation to my tonsils, and what did I do? I got them removed! Again, still not dealing with the root cause.
So now what could my body do, I was still inflamed but my response was to cut bits off and medically intervene.
You see where I’m going with this right? How many of you have had a similar journey? You think you are really unlucky with all your illnesses, you don’t join them all together, you think they are not linked? They are, and I am here to help people put it all together.
I was sat on my sofa one day, feeling pretty sorry for myself and I was watching one of those TV shows where a coach helps people to lose weight, except the coach in question had been hugely obese himself and he now helped people to overcome their food addictions and lose weight. I was so inspired by this show, I thought imagine if I could do a job where I could help people every day.
I then went on a mission to think how I could achieve this, I wanted it to be linked to health in some way as so many people struggle with that.
I did some research and found a college in London and signed myself up for an open evening, within a week I was a fully signed up student! 4 years of study to become a Nutritionist and Naturopath. eek...
I've not looked back, what I learnt has changed my outlook on life and my life! I have learnt so much about the body, how it all works and how it can go wrong. I applied all my learnings to myself and have turned my health round completely.
I am now able to get up and just put clothes on, without having to take a shower! I can agree to do things without being concerned about how my skin is going to react. I know how to make the right food choices for me to maintain health in my own body.
I don't know what I expected when I signed up for college, but I have learnt far more than I thought possible and discovered some simple truths that should be known by all, but that sadly are not.
As I progressed through my studies it became abundantly clear that I needed to utilise this knowledge to serve others and help them understand how to improve their health.
Before doing this I was a business analyst, I helped large organisations integrate software into their companies. Sounds simple but it was pretty technical, I needed to understand what each piece of existing software did so I could work out how these new systems could talk to each other.
I would spend hours with people, asking them questions about how they did their job, what they put in each field to work out what we needed to account for when one system was switched off and the new one came on.
Why is this relevant I hear you ask…
Well, the level of analysis it takes to install new software in a company is similar to the level I need to go to with my clients. I spend a long time asking questions, finding out a lot of history. Working out what happened when and piecing it all together. I’m like a health analyst!
Would you like to find out more about getting to your root cause? Are you at the point now where you are ready to do that?
It takes courage, I know, it takes commitment, I’m not going to lie. But where I’m at now, I wouldn’t change a thing, the hard work was worth it, the hours of study, the working full time and full weekends at college were worth it.
It will be even more worth it if I can help you, YES YOU!
If you want to learn more contact me, I want to talk to you to see how I can help you.
I only want to work with people who are willing to learn and ready to change things, if that’s you then get in touch.
Remember the definition of insanity is doing the same thing over and over again hoping for a different outcome.