4 Years TSW

Hi everyone, I feel I owe you a post and an explanation as to my whereabouts!

Can I just start with saying thank you so, so much to anyone who has asked after me, anyone who has taken the time to email me, comment or message me on other social media. I am so grateful for you all <3 For those who have gotten in touch with me who wanted answers I'm so sorry I've been unable to supply them. Life at the moment is pretty hectic.

I've been wanting to post for a long time but never quite knew what I was going to say. My 4 years TSW anniversary was May 22nd, I was looking to post then but just didn't have the time or the will. It was only really this morning when I woke up a lot earlier than anticipated that I happened to look at a message on Facebook and discovered a whole section of unfiltered messages that contained an overwhelming amount of unread messages, dating all the way back to 2012! I am so annoyed that I've only now just been alerted to them and I can only but apologise for not getting back to you. I will say as well though that I don't add people I don't know to my personal Facebook account - if you want to talk to me I'd prefer it you emailed me. Alternatively I guess I could make a Facebook group...

So anyway. How am I? How is my skin?

I'm doing really good at the moment. I've landed a full time job in the city, which means hourly commuting each way. I'm in the process of buying a house, and have been since November so you can only dare to imagine the stress that I've been under! That is actually another reason I didn't want to post yet - I was hoping I could update from the new house but hey ho - life just doesn't always follow a plan.

At current my skin is pretty good. Dry, but good. I'm still taking Ciclosporin for now but I hope I can come off eventually or even start on Dupilumab, we will see. It hasn't been plain sailing though, when I first started at my new job I had a horrible flare which was really quite embarrassing after being good for a few months and having to meet new people. It keeps coming and going but it's bearable and I also put it down to the stress that comes with the house buying! Not only has my skin been bad but I've also been experiencing other unexplained health issues as well which we're currently trying to figure out. Stress is a funny old thing.

Another thing I wanted to mention is heat - it's really hot in the UK at the moment and I'm OK. I can deal with it now. I no longer come out in a full body heat urticaria rash, I'm starting to feel more confident that that is a thing of the past and was fully related to topical steroids, but until I flare again I'm not going to say that for definite.

There are moments that have me stopping and thinking, things now that I've been taking for granted, that I couldn't even dream to do when I was in the deep grasps of TSW and it's just astounding to see how far I've come. I have a full time commuters job, I can tolerate heat, my skin no longer comes off in gigantic flakes that compare to sunburn peel, I don't have to vacuum my bed, I can take a 5-10 minute shower and be ready within an hour. I can stay at other people's houses without thinking of myself as a hindrance or worrying that my skin or routines will be an issue. I'm no longer housebound. Touch wood I've not had a skin infection or a herpeticum outbreak, in fact I can't even remember when I last had one!

The only things that are still problematic for me is the aforementioned dry skin but even then it's not really that much of an issue - it'd just be nice to have suppler skin but dry skin has always be an issue of mine since day one. I'm also not yet confident I could live with a cat but I think that could be due to lack of exposure, I only spend time with cats once every couple of months so it will be hard to build up a tolerance, but gone are the days of full body rashes and acute asthma attacks when I so much as dare to look in the direction of one. I also still suffer from dermatillomania but I feel now that my skin has cleared up there's not as many imperfections for me to pick at, but of course the tweezers still come everywhere with me! I also don't wear make up but I'm cool with it... that's the other thing, when going through such a traumatic illness you just start accepting your appearance for what it is. In my early 20s before the onslaught of TSW madness I used to wear make up every single day and when I became so ill it was a travesty, but over time you just accept that it's your face. It'll do.

And now onto the eagerly awaited awkward photos (that's the other thing, it's been so long since I've taken photos of myself I just can't haha!):

I decided to take photos in a changing room because the lighting is always different.

Ignore the scab on my chin... it was a spot but dermatillomania and that...

I woke up like dis

Awkward flabby tummy pic

So as you can see, dry but currently rash free!

Hope everyone is well and I promise not to leave it so long next time.

Also I was emailed about this giveaway to share with you all which we can use to celebrate my 4 years of being steroid free!; Win some Dermasheets for your bed worth $270!

Good luck!

32 Months TSW

Hi everyone,

How the time flies! It has been roughly 3 years since I set up this blog in order to spread awareness of severe eczema, then learning of steroid induced eczema or 'Red Skin Syndrome' and in this time I have had a staggering 330,000 blog views. Your kind emails and comments also mean the world to me as I am humbled to learn that my blog has achieved it's aim of spreading awareness and showing people that they are not alone in this. I am truly grateful for the opportunities that have been opened up to me and for those of you who share your own experiences with me to show that I am not alone.

Thank you.

In other news sorry I have been AWOL recently. I work full time now and find it hard to find the time and energy to write on here. But I am still here! Although something scary happened on Christmas day morning. My Google account was 'hacked'. 2 weeks of trying to get hold of Google later, to discover that Google had just decided to change my email address, thus locking me out of my whole account. Cheers Google! Never mind... It's all resolved now!

I bet you're all dying to know how my skin is? Well it still isn't exactly great. My face, neck and arms have recently flared and I think the trigger is stress related. I mentioned that I'm now working full time - it's still within the same company but it's in a different department and I'm learning a hell of a lot. There's only 2 of us in the department and my colleague had a week off after Christmas which was probably the worst time for her to disappear. Needless to say I struggled immensely, and hence the result is that my skin is a bit of a mess. But that was weeks ago now, I hear you cry. Yes it was weeks ago but now that I no longer have the adequate time to heal (read; laze around and do nothing), it's going to take a little bit of time. It is however slightly better today than it was though.

Rashy, dry and wrinkly!

Yes my brows need sorting. But I have some!! & I'm also noticing more baby hairs on my head :)

Splits on my eye lid creases

I am now officially vegan. Shane and I have seen the light and don't want to consume any more dairy - I stopped eating meat months ago. We even enjoyed a vegan Christmas, at both of our parent's houses and it was glorious.

My next step is to try to incorporate more raw fruits and vegetables into my diet, but it is hard to think meal-wise what I can eat for lunch at work. I work from 7am so am hardly in the mood to make meals for work. I've been enjoying the night before's left overs or pitta breads and hummus with tomatoes and spinach but I want to try to get away from bread and consume more vegetables instead.

I've been snacking on fruits - kiwis, blueberries, bananas, oranges and apples but find they don't sustain me for long. I can't take huge portions of these things either because I don't have much time to eat them and we're forbidden to eat at our desks so that's a bummer. I would take salads but the prep thing is the only thing holding me back - I haven't actually tried it but I imagine it wouldn't taste so fresh making it the night before? I don't know.

Breakfast is usually a variation of overnight oats or smoothies so I'm definitely getting my quota of fruits in there. I just need more during the day. Also considering probiotics now. Something I've been thinking  I'd try for ages but I don't want to pay an arm and a leg for them. Does anyone have suggestions of good but cheap ones?

13.5 Month Photos

Please ignore the toilet and general bathroom stuff in the background. I can't be bothered to retake the photos.

Face with a little bit of Purepotions on. Yay for eyebrows though.

My lovely Deirdre Barlow neck :(

Chest

Right hand side really seems to be going at it in terms of flaring.

Right leg

Left leg

Left thigh

Poor wrinkly tummy

Mass shedding on left arm (right is the same but too hard to photograph!)

Hard to see but wrists have a bit of a sleeve thing going on

Right arm - you can just about make out the open sores

Armpit. Infection has disappeared thankfully but it's dry and slightly red.

Back of knees are appalling and I'm finding it hard to walk.

Trialing Products

In the last few months I have been sent numerous products to trial in the hopes of helping my skin get better. I found that full moisturiser withdrawal doesn't work for me, but similarly too much moisturiser doesn't work either and so I've had to develop a happy medium. This however is no easy feat as my skin is perpetually changing. Some days it is much drier than others, other days it is red, blotchy and flaking. There's just no winning. I want to get away from paraben and synthetic products if possible to further aid my body's recovery and so have been open to receiving and trying out natural products.

With this in mind, I thought it would be good to share with you some of my own experiences with the products that have been sent to me. Remember what works for one does not always work for another, we are individual after all. I am in no way trying to sell any of these products, opinions are my own and I was sent these samples for free.

I'm an idiot for not keeping a daily log as I find some of these products hard to recall but I will endeavour to write honest reviews.


Purepotions

I was sent this product pretty much as soon as I had started withdrawal from topical steroids and was very excited to try it as I had seen the duo behind the company on BBC's program, Dragon's Den, and found their company intriguing. I was sent a full sized sample of their Skin Salvation Moisturising Ointment. However it took me months to actually get round to using it as I was worried about it making me worse if I was found to be allergic to any of the ingredients.

I tried out the ointment which comes as a salve. The smell is a bit overpowering but that's to be expected of a natural based product. I wasn't overly keen on the application as it is a lot less moiturising in comparison to the white soft paraffin I had been using beforehand, but I was using it on a daily basis. Looking back it's difficult to say if this product was working or not as for whatever reason I ceased using it... perhaps this is when I entered my moisturiser withdrawal? I forget now annoyingly but there are other eczema sufferers who swear by it. Perhaps after my current trial I will go back to using it...

Haughton Greene

Company, Haughton Greene sent me a 15ml tin of 'Lavender and Mandarin Sensitive Skin Balm' containing ingredients;  Triticum vulgare (wheat) germ oil, Cera alba, Butyrospermum parkii (shea butter) fruit, Helianthus annus (sunflower) seed oil, Calendula officinalis flower extract, Lavandula angustifolia, Citrus nobilis peel oil. Due to the small amount of product I only applied it to a few areas. It was a joy to apply but I was unable to distinguish any difference in my skin.

I dare say this would work for others, but you'd need an awful lot of the stuff if you suffer with problematic skin all over.

Beeutiful Skincare


I was issused with a 15ml tin of 'Healing Balm' product from Beeutiful Skincare. It contained the ingredients; Organic Olive oil, Honey, Cocoa butter, Beeswax, St.John’s Wort in Sweet Almond Oil, Calendula, Vitamin E, Lavender, Tea Tree & consequently Geraniol, Linalool, Limonene. I applied this to my legs as it was only a small amount of product. If I were to use it on all of my problem areas I doubt I would have any left over from one day's use. I can report that it applied nicely and didn't cause any further irritation, however after a week's use I couldn't see any difference in my condition.


As above, it would probably work for others but not if you have as much bad skin as me.

Barefoot SOS

I was recently sent a product to try from Barefoot SOS from their Dry & Sensitive range named 'Daily Rich Body Lotion' which actually contains a much more complex range of ingredients than I was led to believe.

INGREDIENTS: Aqua (Water), Cetearyl Alcohol, Helianthus Annuus (Sunflower) Seed Oil, Macadamia Ternifolia Seed Oil, Glycerin, Caprylic/Capric Triglyceride, Glyceryl Stearate, Pentaerythrityl Distearate, Simmondsia Chinensis (Jojoba) Seed Oil, Squalane, Theobroma Cacao (Cocoa) Seed Butter, Butyrospermum Parkii (Shea) Butter, Argania Spinosa Kernel Oil, Cetearyl Glucoside, Caprylyl Glycol, Citrus Grandis (Grapefruit) Peel Oil, Oenothera Biennis (Evening Primrose) Oil, Sodium Stearoyl Glutamate, Lactobacillus/Portulaca Oleracea Ferment Extract, Limonene*, Alcohol, Caprylhydroxamic Acid, Allantoin, Calendula Officinalis Flower Extract, Panthenol, Canola Oil, Stellaria Media Extract, Citrus Aurantium Amara (Bitter Orange) Flower Oil, Arctium Lappa Root Extract, Linalool*, Lavandula Angustifolia (Lavender) Oil, Anthemis Nobilis Flower Oil, Daucus Carota Sativa Seed Oil, Geraniol*, Daucus Carota Sativa Root Extract, Citral*, Citronellol*, Phenoxyethanol, Hydroxycitronellal, Aloe Barbadensis Leaf Juice, Beta-Carotene, Chlorphenesin, Tocopheryl Acetate, Butylene Glycol, Hexylene Glycol, Citric Acid. *Naturally occurring within essential oils.

Perhaps this is why unsurprisingly this caused me further irritation and stung a lot when put on some of my more sensitive open areas.

They did however send me another product from the same range called 'Face and Body Rescue Cream', however this seems to contain similar ingredients. I am hesitant to use it, given the stinging that the other cream caused me but I will think on it.



Right now I am trialing Shaloah Skincare so I shall let you know how I get on with that.

Happy Birthday I Have Eczema Blog!

Tomorrow will mark 1 year since this here blog has been up and running. No doubt there will be a celebration of cake to mark the occasion... any excuse for cake in this household!

This blog matter has come a very long way though seeing as I originally started it up to inform others about how severe eczema can be as a condition, only to then learn that the reason I was suffering so terribly was because I had gone on to develop a condition called topical steroid addiction. It has changed my life now knowing what I am suffering from.

I have also been subject to some very exciting opportunities which have only happened because of this blog such as writing for Talkhealth, having an article printed in a nationwide magazine, writing guest posts on other people's blogs and even taking part in competitions that my readers have also benefited from. I've reached over 80,000 page views which is absolutely fantastic to know that I have been able to reach out to so, so many people over this past year. Your emails and comments help keep me going and I really cherish them, even if I can be lax in responding (I'm sorry!).

Unfortunately there are no celebrations to surround my skin. It still isn't letting up just yet, despite my best efforts to try to keep it under some form of control. Just seems to be one of those annoying inexorable things that comes part and parcel with topical steroid withdrawal.

 Right side of face

 Left side of  face

Neck

 Part of breast

Torso

2014 Eczema Flare: Topical Steroid Withdrawal

Ok so this is annoying. After a particularly good stint I guess it was only a matter of time.

Not sure what has brought this on but needless to say I'm not a happy bunny.

Photo of Eczema Skin 5 Months Topical Steroid Withdrawal

I've had a few people ask how I'm doing lately so I figured I'd give a brief photo update.

Overall my skin is remaining white, it's just very dry and does go the palest shade of pink after rubbing on my face. I'm covered in tiny little wounds from scratching but they're so tiny and it's really just from the dryness that they've occurred. My skin is thick enough now that it doesn't cause weeping when I give it a good old scratch, just tiny nicks here and there that scab over and I naughtily pick them off.

 You can see the dryness is predominantly on my eye area and cheeks. My lips have been horribly dry too. You can also detect the skin flakes on my t-shirt. Yum! Oh and my eyebrows are becoming a little bit sparse again but I reckon that's because the skin isn't moisturised enough to hold in the hairs so when I have a scratch because they're so brittle they fall out easily.

Closer version

Closer side view

Mostly white tummy/hands except for some naughty scratching which has created the aforementioned small scabs. I haven't had matching hands for a while now so this is nice to see. My hands were also covered in hard skin last month which took ages to get rid of and although they're dry as a bone the skin feels relatively normal.

There still isn't much difference occurring in my legs. I just can't leave them alone :( I'm so bad. Telling the world about my picking habit obviously did nothing mentally for me. If it wasn't so cold right now I'd parade around in shorts so that everytime I caught myself in the mirror I'd feel ashamed.

But there you have it, a mini update from me! I think I attribute the dryness of my skin to the cold weather. It has been extremely windy and in fact we were down in Portsmouth this past weekend when the winds were a good 30mph. That obviously has done nothing to revive my poor skin.

Hope everyone is well :)

Eczema & Dermatillomania

I must start this post first off apologising that my posts are becoming less and less, but it's because I feel as though I don't have much to talk about recently. My blog started off in its infancy as a blog to inform people about my severe eczema and to help them, and other fellow sufferers, relate to the debilitating nature of the condition. As time went on I found out about Red Skin Syndrome and I was getting illnesses pop up far too frequently for my liking and so this here blog took the form of a journal.

Not a great deal has changed since my last entry regarding my skin, it is still rather pale, however the scabs on my legs have dramatically spread and look even worse in their appearance because I just can't leave them alone. This is why I would like to turn to the subject of Dermatillomania.

Dermatillomania is described as an obsessive compulsion of skin picking. It is much the same as Trichotillomania (hair pulling) where the compulsion becomes too much and despite knowing the consequences, such as creating ugly, raw and even scarred, disfigured skin, it just can't be helped. It brings a sense of relief to pick at the skins irregularities and is even a pleasurable experience.

I, myself have been picking at my skin since the beginning of my severe eczema phase (Jan 2009). Prior to this I had strange habits such as cutting individual split ends from my hair for hours and hours. Skin picking is not a habit that can be easily broken, much like scratching the all-consuming eczema itch. Having eczema primarily means that I will always have scabs to pick and dry flaky skin to attack with tweezers, it's just part and parcel of the condition. I know I won't be alone in my skin picking habit, as I know of many others with eczematous skin who do the same.

I wanted to talk about this because I am having a lot of trouble breaking the habit of picking at the scabs on my legs. Skin picking has always been something I've done as a way to relax and is one of my coping mechanisms. I have been known to spend hours and hours just picking and tweezing away at my skin and I even have urges at various points in the day to just go home and pick. When I'm out away from home there's always the thought in the back of my mind about how I will go to town on my skin later on. It's a bit like a dirty little secret because I like the experience of just sitting there picking off all the dead and irregular skin but if people knew what I did, and I have told some of my friends, they would be horrified and disgusted.

I realise how I'm basically destroying my skin and making it even worse because it just isn't being given the time or the means to heal naturally but I just can't help myself. It's like an addiction. It has been compared to self harm because you're fully aware of what you're doing to your body but the compulsion for relief is just too much.

I've decided to publicly create this post because I feel the more people who know about this, the more I may feel embarrassed that I am causing myself harm. I've been taking measures to not use tweezers on my legs, to keep them covered up, and if they do become itchy to allow myself to scratch if I have to just to quell the itch, otherwise it just becomes all too consuming and there's no stopping me. I will literally go to town taking every single scab off, making it bleed and produce proteinaceous fluid so that it can form new scabs. Sadly if scabs are picked off too much it can cause scarring and larger areas to form.

I said in a previous post how one of my life goals was to be able to freely wear shorts next year without tights or leggings. Let's hope I can leave my legs alone to actually fulfill that.

Does anyone else suffer from this annoying little quirk? Please comment and let me know :)

Month 4: Noticeable Improvement

So this Sunday just past I reached the 4 month mark of withdrawing from topical steroids. Things are going pretty grand. My skin has been pale for the past fortnight now which is always fantastic to look like a relatively normal human being. However I am still periodically becoming covered in pus filled bumps which I can only assume is the MRSA still rearing its ugly head. It appears to be on a daily basis but the spots seem to disappear just as quickly as they arrive. I've found to try to combat them, as I mentioned in my previous post, is to not moisturise. I think this stops the bacteria from spreading because the moisturiser typically makes the skin hotter and thus inhibits bacterial growth.

I did see my derm nurse this past Friday and I've been given a further 3 months course of the antibiotic which appears to be relatively safe in terms of the side effects etc. It's given to those who suffer from acne and is also used to treat malaria, sexually transmitted infections and is also used for those who travel to prevent them getting nasty infections like ticks and gut rot... some nice trivia there for you. I think MRSA is one of those ones that can take quite a while to overcome so I'll just sit it out.

I'm sorry for the poor quality of the images. I think my camera lens must be covered in grease, as is everything in my life. Anyone else with a skin condition who has to use moisturisers will understand the annoyance of this.

Full length image. Yay looking pretty pale.

I keep scratching my arms, especially my wrists and hands which is a bit of a nightmare but the skin here as you can see is very dry and dryness = itchiness. Can't win can I?

My legs are still really horrible, covered in scabbing which gets soooo itchy! You can see at the top where it's a bit bumpy too due to over-scratching. You can also see the "sleeve" on my feet. But it's not so much due to Red Skin Syndrome, but more so because of the discolouration that has been caused from scratching too much.  

It has spread onto the tops of my feet, just as it has on the tops of my hands. It's so frustrating because those were the two places where I never ever had dermatitis during this journey.

Tummy has a few dots that keep filling with pus now and then but otherwise is really pale and not bothersome.

As mentioned in my last post - I have eyebrows! I've never had proper thick eyebrows and these are rather like my Mum's where they're sparse yet thick in size.

& I thought I'd include my face for good measure. Looks relatively smooth and pale :)  and no Photoshop involved! and my hair is also thickening slightly. I haven't had really thick hair since around the age of 12 so I don't expect miracles but this is certainly better than it was at the beginning of the year.

Tomorrow I have my MRI scan to make sure everything is alright in that head of mine after the suspected mini stroke I had last month. I've never had an MRI scan before so I hope it's not too scary.

Happy healing everyone!