A Brief History From Memory

Hey guys,

I've got this written in my FAQ but not many people read it so I thought it was worthwhile posting it here. It's just a brief low-down of my eczema/ skin condition journey. Obviously there is a lot more to it and this is from my ever dwindling memory rather than from doctors notes but it is a pretty accurate account of what has happened to me. It's also not the most coherent but helps to give a better understanding of the complexity of my condition and why I have gone on to develop an addiction to the medications - I just used too much! It is also quite likely I've forgotten to include something. But here we go:

• Childhood - Hydrocortisone. Oral Prednisolone (for asthma). Had chicken pox twice in the space of a year.

• 2001/2 - Betnovate scalp lotion (first started to use hair dye)

• 2003-2005 - all of the above treatments and various moisturisers when needed for small patches that developed on face.

• Nov 2005 - Stressful event resulting in huge allergic reaction affecting face, neck, arms and chest - All the above + Eumovate, Betnovate

• April 2006 - cleared up and returned to small insignificant flares on face and neck. Just used Hydrocortisone and Eumovate

• July 2007 - Heat induced urticaria developed when on holiday in Spain.

• 2006-2009 - Hydrocortisone/ Eumovate

• 2009 - Was given steroid to treat rash on face, within a few months spread all over my body apart from legs. Used Dermovate, Eumovate and told to use as much as I wanted/ like a moisturiser. Had patch testing and IGE testing. Oral steroids. Coal tar, yeast cream (not to be used on face but was told to by derm), Potassium Permanganate. Protopic. Developed red/brown patches of skin on my neck and elbow flexures that were as hard as a scab and really painful. Couldn't move my neck. Was given a cream when I moved to Lincoln but can't remember for the life of me what it was. Was bloody brilliant though.
• Developed severe allergy to the cats at my mum's and was hospitalised a few times when I went to visit, despite having lived with them my whole life!

• Jan 2010 - Immunosuppressant Ciclosporin whilst using steroid creams.

• August 2011 - started to get high blood pressure so had to come off Ciclosporin. Was given several rounds of oral steroids when steroid creams wouldn't help.

• April 2012 - had round of Oral steroids and developed eczema herpeticum after never having a cold sore in my life.

• Tried Ciclosporin again to no effect.

• Visited Allergist/ Immunologist for another perspective but was just ridiculed and humiliated and told "you just have eczema".

• Tried various diets to no avail.
• September 2012 Tried immunosuppressant Mycophenolate Mofetil to no effect.

• October 2012 Tried immunosuppressant Azathioprine to no effect.

• December 2012 Tried immunosuppressant Methotrexate had no effect but started losing hair so came off it in Feb 2013.

• Light therapy which just made my skin look sunburnt, minus my white nose so knew it wasn't a true burn.

• Tried Ciclosporin again to no effect but remained on it for some time. Found out about TSW.

• Started TSW May 22nd 2013. "Eczema" spread everywhere apart from my toes.

• Had major super infection from eczema herpeticum and cellulitis in the eye so was hospitalised for a week. Came off Ciclosporin to try to speed up getting rid of infection.

• Went back on Ciclosporin but became incredibly poorly.

• August 2013 - Found out I had contracted MRSA from the hospital stay so ceased Ciclosporin. Started taking antibiotic Doxycycline for 2 weeks.

• End of August 2013 - Had suspected "TIA"/ "Mini Stroke"

• September 2013 - MRSA came back with vengeance so proceeded to take Doxycycline for 3 months as should have done originally.

• Skin stayed in a mostly good state until April 2014 though still had random bouts of herpeticum but not so extreme.

• April 2014 - Bad case of eczema herpeticum.

• May 2014 - Moved to West Yorkshire and skin became as intolerable as when first come off steroids. (Yearly rebound?)

• Was incredibly poorly until August 2014 when went back on Ciclosporin. Had 6 weeks off work.

• Ciclosporin helped for a month and then had recurring staph infections from October 2014 - May 2015.

• May 2015 - Last staph infection *touch wood*

• August 2015 - Been in a stagnant phase where I will randomly flare but be mostly clear. Eyebrows are back. Still on Ciclosporin but on a higher dosage. Came off birth control pill in May (had been taking for 10 yrs) and have gained a lot of weight. Waiting for hormones to level out.

So all in all we can conclude that I have been given far too much potent topical steroid creams to slather unnecessarily all over myself. Too many round of antivirals and antibiotics for my endless bouts of herpeticum (think we're around the 20x mark now?) and bacterial infections so my gut probably doesn't understand what's right or wrong any more. Far too many rounds of immunosuppressants and just too much in general for my poor old body to handle.I just hope my body will one day forgive me and that all the nutrients I consume will finally have some effect.

13 Months Topical Steroid Withdrawal

Hey everyone, sorry for my lengthy absence. I'd been holding off on posting because I wanted to show you how my skin had changed for the good... only it hasn't... and yesterday it became its worst.

So the story goes, my eczema was getting worse and worse and actually became weepy in places, and so I suspected infected eczema. I already had an appointment Friday just past to get some more medication, but it was a nurses appointment and I soon found myself sorely disappointed that she couldn't help me. I went to reception and managed to grab a doctor's appointment as an 'urgent extra' and was told to come back in an hours time. I wasn't actually seen for a good hour and 40 minutes after my designated slot, so was rather annoyed that I'd wasted my entire morning waiting at the doctor's... but it was fine as I ended up being prescribed Flucloxacillin antibiotics to help out my skin.

I took 3 of these wonderful tablets and thought no more of it, as I happily drifted off to sleep that night. When I awoke on Saturday morning my eyes were swollen and my entire face puffed up, the eczematous rash that was only in some areas of my body had spread dramatically everywhere. I was worried. What the hell could have brought on an allergic reaction?

I decided to ring NHS 111 to get some advice as I figured the only new thing I had introduced was the antibiotics even though I have taken them a lot in the past. Despite the fact my breathing was unaffected she decided to ring an ambulance crew for me as she was worried that it could indeed be a drug allergy. I went off to hospital in an ambulance and was administered straight away with a cannula... which of course they struggled to get in! My skin was hugely inflamed and my veins completely hidden. They did manage in the end and it hurt. A lot.

I was then assessed by a doctor who was concerned about me and said that my treatment would be a course of oral steroids. I was devastated and worried about the risk of eczema herpeticum, of which we must all be aware by now that these suppressive drugs bring it out on me. He then went away to talk to a dermatologist who then made a plan to still issue me the oral steroids but to give me a back up course of Acyclovir. In the past despite taking a course of Acyclovir I have still ended up with herpeticum, and so I declined.

I could tell he was pissed off with having a difficult patient, so we ended up coming to a compromise that he would just issue me with a different strain of antibiotic and antihistamines BUT I would have to stay in the hospital much longer for observation purposes. I reluctantly agreed as what other choice did I have?

I was whisked off to a ward where I was kept for "observation" for 8 hours. Finally at the end of my stint, a doctor came to see me. He came to the conclusion that I was not suffering from a drug induced allergy but that it was just my eczema playing up. I didn't agree with him but allowed him to bring in the dermatologist who also wanted to assess me. He too agreed that it wasn't an allergy I was suffering from but eczema despite having seen the photo evidence from earlier in the day of my face all swelled and puffed up.

I'm sorry but I certainly do not agree. Eczema doesn't just cause you to have a swollen face! In all my time I have never ever had eczema that has made my face swell LIKE an allergy. Allergy does play a part in it. Oh well these people do get paid a lot of money to dish out the steroids afterall. Which is exactly what he did. I was sent on my way with a prescription for Eumovate to use on my face, Dermovate to use on my body and the Elocon afterwards. No antibiotics any more as they believe I never had infected eczema on Friday despite my weeping skin.

I'm not sure what my next move is going to be. Not steroids. I've come so far without them that it'd be a huge shame to start the whole steroid withdrawal again. But I really don't think my skin is going to fare well on its own.

I'm in a bit of a pickle really.

Oh and that cannula they put in? Yeah they never used it to administer anything. What a bloody waste.

I do still believe I did have an allergic reaction this morning and will be extremely wary of using penicillin in the future.

Me with poor swollen eyes

10 Months TSW

Today will mark my 10 month anniversary of ceasing the use of topical steroids. My skin is still crazily up and down, day in day out, hour by hour, but it isn't stopping me from living so I can't complain.

As you saw from my previous post I have been trialing various lotions and potions to see if they make any substantial difference but nothing seems to really improve my condition. My skin is perpetually dry. In fact the other night I had a horrible itch fit where I was bright red and just could not stop the insane itch, which I was thinking must have been induced by an uptake in moisturiser and so the next day I went moisturiser free. It was manageable. I didn't bother taking a shower or washing myself at all and in fact did some exercise too to try to get some sort of oils going. Exercise was fine and the sweat didn't irritate... I was just very smelly by the end of the day!

The next morning however I looked like a porcelain doll who's face had cracked into a thousand and one pieces. The skin had become taught and wanted to come off in large flakes. I showered to help it along but I just couldn't cope because the dry, tight skin was worse to me than the itchy red skin so I caved in to using a tiny amount of moisturiser. I seem to be on the up again, though incredibly flaky but as I say, I can't complain too much.

I haven't had a day off work on the sick since the beginning of September 2013. That's more than 6 months ago! So I can only commend my body for letting me get this far. Sure, it will take time to fully recover and heal, to be able to wear black clothing again, to wear a bit of make-up, and possibly even dye my hair but I have come a hell of a long way in these 10 months.

I have an appointment with my derm nurse in about a week and a half, I know she'll nag me because the skin is still so dry but I haven't been to the hospital now since January 2nd so surely that must say something in its self? I'll also be told off for not taking my medication strictly but I don't feel I need it any more... she says... until the next mega flare... But no, I'm sure I'm fine.

I'm also interested to see what the summer weather will bring. Last summer and every summer prior to my TSW, I practically died from the heat. I was suffering from heat induced urticaria which has definitely lessened more recently. I can stand to be in the kitchen for longer periods cooking food standing over the hob. Sometimes I will overheat but it is a billion times better than it was initially.

Oh I should mention that I also reached 100,000 page views on Sunday just gone and celebrated with a gorgeous pina colada cocktail! No alcohol has touched my lips since August 2012 because I felt it aided my itchiness what with its dehydrating nature, so this was quite the celebration. I can report that I didn't get itchy afterwards and my skin was alright - Yay! I doubt I will be drinking much these days if at all because I am accustomed to it, but it's good to see that I didn't have the adverse affects I've been so cautious about.

So yes, thank you to everyone who has visited, commented and sent me kind words over this last year. Your support means so much <3 and I'm glad I have been able to create a resource that benefits others who also suffer from eczema.

Happy healing!x

All The Cake

Wow. What a fantastic day today has been!

The sun has been shining, putting us all in a lovely mood which has been absolutely brilliant for the Bake Sale we held today to help promote Shane's 1000km Challenge in order to raise money for the National Eczema Society. We made a whopping £152.72 which couldn't have been achieved without the help of others donating their baked goods - so a big thank you to everyone who has taken part - we are incredibly grateful for your support!

The layout of this table changed a lot over the 6hrs we were there, including further cake donations!

It was also lovely to see a turn out of other eczema sufferers and to have a chat about our conditions sharing our tales of both woe and hope. I'm just so pleased that people have taken an interest in our cause as eczema as a condition tends to go unrecognised in the wider scheme of charities, especially given its debilitating nature in a large number of individuals.

My friend pictured above, Hannah, who blogs over at The Retired Bridgeburner, came to stay overnight to help us man the bake sale. It's been lovely having her here and I am beyond grateful for her assistance and indeed putting up with me complaining about being extremely itchy and flaky ;) Come back soon, Hannah! She is a huge tea and cake fiend like us, so of course despite being surrounded by cakes for a bake sale we had to bake some for ourselves! We also had to have a trip to Bunty's Tea Room which was a pleasure as always. People who have never been to Lincoln should always go to Bunty's as it is a part of the city experience! 

Sore, Red, Dry, Itchy and Oozy

In my last post a lady linked me to her video that she had created about her experiences with this "Red Skin Syndrome" that is brought on from Topical Steroid Withdrawal. I was quick to show some of my immediate friends and family as she explains it all so, so well and her story is extremely similar to mine. I also like her comical way of putting the video together. It made it that much more "real" and there's definitely no pussy-footing about (no pun intended Miss Kitty Fantastico!) she gets straight to the point.
So please take the time to watch this, it really is interesting!

In news of how I am today, well I'm not good really. I only woke up at 11:30 which is hugely late for me but the truth is I've been avoiding getting up because it just feels all too raw and painful today. It's all because of last night's antics and frustrations. I came home from work expecting to be able to have a nice relaxing bath and the hot water stopped being hot when I'd only filled a small amount of the tub so sitting there on the bathroom floor in a state of itchy frenzy, with no one to support me I had a bit of a break down. It  took about an extra 40 minutes or so until I could run my bath. 
It will sound beyond trivial to some that I wasn't able to bathe as and when I wanted to but it isn't because I want to, it's because I need to for the sake of my poor skin. If I don't pander to the needs of my skin as soon as I can life just doesn't feel worth living.

Red Skin Syndrome

So today I'm in a state of turmoil and curiosity has finally gotten the better of me. I keep getting hounded by people telling me I have this "red skin syndrome" which to those not in the know, is essentially what happens when you've used steroids for years; your skin becomes addicted and completely dependent on the medication.

The typical symptoms of this are:

1. Red burning skin, hot to the touch, that spreads over the entire body, despite it originating in smaller places with extreme itchiness that cannot be satiated. 
2. Skin that weeps and oozes.
3. Eczema type rashes that spread over the skins surface.
4. Hives/ Urticaria.
5. Difficulty regulating body temperature with freezing hands and feet and you may often suffer all-over body chills.
6. Extremely dry skin that sheds like crazy and needs to be vacuumed daily.
7. The skin is so sensitive that you can become allergic to basically everything.

Now, I'm quite a stubborn person in that when I know I probably wouldn't be able to make something work I'm reluctant to give it a go, however the symptoms are so similar to what I'm going through I'm just at a bit of a loose end.

The only way to stop an addiction is to go cold turkey, no steroids can be administered whatsoever to give the body a chance to recover and cure itself. Many people who undergo this withdrawal find that depending on how long they've taken steroid medication it can take months and even years and years to finally come into remission. They also find that they will need to take a large chunk of time off work because it is virtually impossible to attend.

I'm already fully aware of just how vicious eczema can be as I've spent massive portions of time off from work, university and college in the last few years because my skin is just uncontrollable, inhibiting me from being able to get dressed and even the ability to concentrate. You can see in my archived posts, specifically the ones entitled "Living With Eczema" just what I have had to go through. I'm not sure if I would want to relive all that on a longer term basis because I really have done so much to pull myself out from that pit of depression. I don't want to endure it again.

My only problem is it's been bad enough to try to rebuild my sick record from having all the time off. My employers know the extent of what I go through but I just wouldn't be able to function without my job. Shane and I struggle enough to pay our bills as it is with barely a penny left over to enjoy ourselves, so without a job we'd be in short, screwed.

So this is why I'm in a state of turmoil. I'm not sure I would be able to give steroid withdrawal my full commitment, and I definitely wouldn't be able to give up my steroid inhaler, but I must say that it does seem likely that it is what I have.

At the moment there are only a couple of doctors who believe in it (based in America I think...) and I have mentioned it to my dermatologist in the past but he's just shaken it off. It is only a recent finding so I'm not too sure on the credibility, though no doubt I'll get loads of you telling me that it does work. Yet, if this were the case, why don't more doctors believe in it?

You can read more about it here.


Images of Kelly Palace, before and after, pinched from the ITSAN website.

Summer Days: Eczema (Warning: Deep Post)

So the sun is shining, the last couple of days have been serene and beautiful... but I'm not allowed to enjoy it... according to my skin anyway!

I envy those people who's eczema gets better in the sun shine weather. Mine just gets worse and worse. Everything about the sunny weather just destroys me. The heat is too much that I get itchy and irritable and come out in hives; the abundance of UV rays means high factor sun cream which dries out my poor skin; not to mention the emergence of insects that act as irritants! It's bad enough to near-constantly feel as though I have millions of tiny insects crawling all over my body, but to have it actually happen makes that sensation all the worse!

I find myself tearing my poor skin to shreds because I just cannot get comfortable. Summer is literally hell on earth for me but I wish it wasn't. I want nothing more than to enjoy soaking some of the sun up through my Vitamin D deficient skin but those times are just distant memories, what with now taking immunosuppressants that make the risks of getting the likes of skin cancer that much greater.

I yearn for my youth for when I could paddle in the sea on a summers day, without feeling the sheer agony of sea salt driving itself into fresh wounds; for reading a good book in the sun trap that is the garden; for going on sun lit adventures; and most earnestly to just feel god damn comfortable in my own sodding skin.

I miss being normal.

I think that's what makes it worse for me. I've always had eczema but I've never suffered from it as much as I suffer now. It was always manageable and easy to rectify. Life gave me a taste of what it is to live but I have so many regrets that I've taken the life I had prior to this for granted. I'll never get back these past few years of my "prime" where I could have really made something for myself. We are only on this earth for a blink of an eye after all.

In short: you can't miss what you've never had, but if you were lucky enough to experience life beforehand make the bloody most of it. Life is too short.

Don't Let Them Bring You Down

I must say that I have reached a stage in my life where I have managed to come to some kind of terms with the fact that I suffer from severe eczema. I've stopped giving a damn about how I look without make-up if I need to leave the house and I know I will never be able to wear or even do some of the things that I used to. This does not however mean that I have become completely immune to some of the comments and looks that people give when I'm having a bad flare.

Working within retail can be really difficult sometimes. You are faced each day with a plethora of customers, some kind, some not so kind. I get quite a few inquisitive remarks asking if it is eczema that I have, alongside some downright filthy looks when they see my hands and arms as I'm packing away their precious new items of clothing.

When this happens, you just have to think that we as people are ignorant and will judge by appearance. Everyone does it. Hell, even me. It's just within our nature as human beings to see something outside of the norm and to not completely understand it. However, it's what you do with your initial judgement that really counts. Some people will look away, some will be rude and stare and even comment, some will look at you sympathetically and others will ask you why you're different.

I don't mind explaining my condition to others, as you can see from the fact I've made a blog to promote awareness, I am more than happy to talk about it. I'm not embarrassed at the fact that I can't control my body, I just become agitated more than anything as I know that when I do flare I will get comments and questions that I know I will no doubt have to answer. A lot of other people I speak to are embarrassed about their eczema but they shouldn't be. You can't help that you're having a flare, it just happens. Sure, it's annoying as hell having to walk around with a blotchy red face but don't be embarrassed, you are you, you're much more than just the way you look.

Happiness is one of the key ingredients to living a less stressful life, and can even help to regulate your condition, and so it is paramount to not let people belittle you just because you have an illness that is difficult to control. If you are bullied because of your eczema then these people just aren't worth an ounce of your time. These people promote toxicity and need to be severed from your life else they will no doubt allow you to feel terrible about yourself. You don't need that. At the end of the day looks are just looks and don't really matter in the grand scheme of things if you are just able to alter your perception of life; beauty is in the eye of the beholder after all.

Basically, don't let people get you down about the fact that you're living with eczema. You're already going through enough of a battle with your condition to let these added extras bring you down. You are more than your condition. You are you and you can succeed.

I really hope this helps, not just eczema sufferers, but anyone who is facing a hard time with their appearance. :)

Eczema Herpeticum & Being Given Wrong Medical Advice

Wow, again sorry for being so quiet. I can't believe it's the middle of April and I still haven't put that month of photos up. I will - it's just finding the time and motivation to sort all the photos out and actually make the post as I know it will be a long winded process. I might try and do it later on today when I'm home from work.

An update on me; last Sunday my eczema herpeticum came with vengeance, despite taking a dosage of 800mg of Aciclovir. The reason it was still raging is because my dermatologist had wrongly advised me to apply steroid cream to my inflamed face when I had recently had some cold sores on my chin. In all fairness both of us did think that had cleared up but obviously it hadn't.

You can see that there is a pimpled surface without the typical crusting characteristics associated with a cold sore. I'm putting this down to the fact that I was taking the Aciclovir but it wasn't a strong enough dosage to do its job.

On the Monday morning I left the hospital a message to say I would be turning up because I have herpeticum again and was seen to immediately. The staff at Lincoln County Hospital are fantastic at squeezing me in in my hours of need. I am so incredibly grateful that they do willingly accept to treat me. A lot of other places would just turn me away without an appointment and tell me to go to A&E or the walk-in centre so it is good to know they are there for me.

My dosage of Aciclovir was upped to 5 400mg tablets a day for 5 days, and appears to have done the trick. However on Thursday evening my urticaria decided to rear its ugly head when I did some cooking, and since has turned into eczema. This morning I have applied steroid cream to the affected areas of my body; my face, neck, chest, arms and backs of knees; in the hope that the herpeticum was truly gone and isn't going to spread like wildfire. 

Only time will tell I suppose.

Same Old Itchy Story

After having had a couple of manageable days after such a long stretch of bad ones, I'm in a bad way again. I have no idea what has caused the flare this time but I do know that it came on at about 10pm last night. The right hand side of my face went bright red and so, so itchy. I smothered myself in emollient ointment, white soft paraffin, took an antihistamine and off to bed I went. I woke up after an hour of not so deep sleep to find my face to be soaking wet. It was absolutely drenched with weeping skin. Mmmm. I was so tired that I just took a tissue and stuck it to the entire area so that it would absorb to the tissue and not my pillow. This morning I've woken up and my face is a bit grim. So yeah, not sure what to pinpoint as the culprit... and this is how it always is. I make diaries to document things I've done/ become exposed to, food I've eaten and my mood but there never seems to be a pattern. :(


 
 

Haha excuse the state of my hair. There's bed hair then there's my hair. Mental.

The Ability To Get Dressed & Eczema

Does anyone else's eczema prevent them from getting dressed?

My skin is so, so sore and weepy that putting clothing on will just exacerbate the situation and make it worse. I need to make sure my moisturiser has sunk into my ever-thirsty skin before I can even contemplate the idea of clothing because the sticky heat that it brings just sets off my heat urticaria, not to mention ruins my clothes! But even when it has been absorbed I still have to put up with the weeping skin sticking to my clothing and thus taking in fibres/ dust whatever the hell foreign body that shouldn't go any where near my wounds and for these reasons I cannot get dressed. I am a sticky, sore, weeping mess.

Today is a catch 22 situation. I need to go to see the doctor to get some antibiotics because my skin is so inflamed, burning and weeping that moisturising alone just isn't going to help and I suspect it is infected... but I can't get dressed.

I've rang my derm nurse at the hospital to let her know but there will be little that anyone can do for me because at the end of the day I need to be examined by a doctor, and I sure as hell won't be inviting them in for a home visit to see my nakedness in all its glory. It's a sad time when this happens because I know I need to go get help, but my body is cruel and won't allow me to go get these resources to make it better.

Stuck in a rut :(

Reaching A Mile Stone: & How I Feel Today

Wow guys I've finally hit 3,500 views and it's only been 6 weeks. Thanks for coming to visit and please do share my blog around if you think it could benefit or even educate someone else :)

After a reasonably good day yesterday my eczema has decided to do that thing where it just randomly goes bad, swells, itches and weeps. I woke up this morning with my eyes swollen and massively encrusted in dry yellow weepy skin - yummy! But once again have no idea what to pinpoint as the culprit as I did have a reasonably good day yesterday and didn't eat anything out of the ordinary.

Today I'm having a recovery day, applying copious amounts of moisturiser, guzzling antihistamines and have pleaded with another colleague to cover my shift. He's such a star <3 but of course as I explained in my last post, means that I am losing out on money much needed. Never mind.

Check out this video I found on Youtube relating to allergies. It's so relatable and made me laugh xD

Documenting My Skin 02/03/04 of March

Today I've woken up and my skin isn't so good. Yesterday I could feel my skin becoming tight and weepy when I got home from work but Shane's parents had driven him back from his Silverstone Half Marathon Race so we went out for a meal. Prior to leaving the house I took one of my Hydroxyzine antihistamines which can make you drowsy as hell. By the time we got in I zonked out on the couch for around 3 hours before dragging myself up to bed, somehow managing to take a photograph, and remaining asleep for a further 9 hours! Must have needed it.

Luckily I haven't been rota'd in for work tonight so I'll use today as a recovery day which I definitely need. I'm having to constantly moisturise after all.

                       2/3/2013 Morning                                          2/3/2013 Night

 

                   3/3/2013 Morning                                                3/3/2013 Night

4/3/2013 Morning

       I thought I would include a close up of my face this morning as it looked rather lovely and grim. Sorry that the pictures don't all match up and what not, I really can't be chewed today. Just need to relax and be kind to my skin!

Light Treatment & New Treatment As Of Today 22/2/2013

Since having to abruptly end my course of immunosuppresant, Methotrexate, last month due to hair loss, and the fact that it didn't appear to be working, I have been undertaking light treatment therapy.

For years the dermatologists told me I couldn't try it out because it wouldn't benefit me in the slightest and I'm now beginning to believe it. But when you've tried out all available treatments ranging from the steroid creams, wet wrapping, protopic cream, antihistamines, avoidance, hypnotherapy, immunosuppressants etc. etc. it all becomes a bit wearisome and so gaps that have been missed need to be filled, or at least given a go in this case. We are literally clutching at straws now that I've tried out all the immunosuppresants available so light treatment had to be considered even though we knew there would be risks such as contracting eczema herpeticum again, but thankfully that hasn't happened!!!

So I had my first session at the end of January. I was in there for 21 seconds on what I was told was a  dosage used for babies. The most horrible part of the treatment is not being allowed to moisturise beforehand. So you're literally getting up, putting clothing on, having your treatment, all whilst feeling absolutely awful and dry and just yucky and bordering unbearable. Of course as soon as my treatment is done, I'm racing home and getting in that shower. Bliss!!

...But anyway, my first session wasn't exactly brilliant. I had my session at 11:30am and by the middle of the afternoon my face felt like it was on fire. It was so tight but I didn't really think much of it. An hour or so later I passed a mirror and saw that my skin was SO red on my face and neck. But it wasn't symptoms of sun burn which is one of the side effects, as my nose was completely unaffected, no, it was my urticaria.



Annoyingly, the pictures I took were on my unreliable phone. So I was in fact at the time, much redder and much more flaky & the contrast on my nose was ridiculous.

They told me not to completely rule out the treatment and to try again the following Monday on an even lower dosage for a mere 17 seconds. It didn't seem to be as bad this time, my face didn't flare like it had before, but the dryness of my skin was second to none. I was having to moisturise my face literally every 5 minutes because the absorption was just plain ridiculous. I've only been for a few sessions and this is still happening now. I'm going through a heck of a lot of creams and antihistamines. The skin on my neck actually wept the other night (all over my bedding, yum!) and is generally sore and so very, very dry.

So this morning I went to see my dermatologist to see what the next step was. I'm now back onto immunosuppressant, Mycophenolate. Last time I took this I was only on it for a week as around this time I had suspected glandular fever, tonsilitis, eczema herpeticum and just generally going through a horrible time. Back then I thought the only way to stop these reoccurring infections was to stop taking the immunosuppressants as they do just as they say, suppress the immune system. So hopefully I'll get some respite this time around!

Has anyone had any success with light treatment? I'm very interested in those who suffer from symptoms closer to my own and how it worked/ didn't work for you? Those who it didn't work for, what did you do next?

Eczema and Beauty Products

Following on from my previous post I thought I'd talk about beauty luxuries that people without skin conditions take very much for granted. This was provoked by someone underlining some of the things they themselves have had to give up, and a lot of the things I, myself have never actually been able to use or very seldom use.

Make-up, perfumes, nice smelling beauty products including bath bombs, shower gel, bubble bath, shampoo/ conditioner etc. etc. are all things that people generally spend so much money on as a means to make themselves feel good. Most of the products listed are my body's idea of hell, especially if applied directly to the skin. In the past I have been able to get away with some brands of make-up and still use some of them now, providing it's just on the eyelashes/ eyebrow area but as I said in my previous post, my skin burns and weeps now if I try to apply some of the products I used to use. Perfume is another one I try to get away with as it just smells lovely. Instead of applying to the skin I will just spray it from a very close proximity onto my clothing.

The other things such as bubble baths, bath bombs, shower gels etc. are things I've pretty much never experienced because I know the effect they will have. Well, other than using "Matey" bubble bath as a small child but my mum realised it was pretty rotten to my skin so that ceased instantly. People used to find it weird when I said all I washed with was water but in truth that is all that was acceptable for my skin. Nowadays I will use Hydromol as an additive either slathered on in the shower or put into a bath as an aid to my drier than dry skin.

Shampoo and conditioner can also be a nightmare just to those with sensitive skin, so you can perhaps imagine just how bad they would be for an eczema sufferer, especially with added ingredients such as lanolin (also found in many other beauty products) which derives from sheep, a notorious allergen for sufferers. The only brands I've been able to use in my life are Vosene, L'Oreal and Pantene Pro V. The likes of Fructis and Head and Shoulders have had such an adverse affect that I would never contemplate using them again, even if the ingredients have probably changed within the last 15 years! Better to stick with the safe ones if you manage to find them!

It is frustrating also when someone who doesn't know you well buys you one of the above as a gift and for fear of being ungrateful you just have to accept it and give it to someone else. Nowadays if I have a Secret Santa or whatever I'll tell whoever is organising it to tell my Santa not to bother buying them. Better than having a wasted gift though isn't it?

I do sometimes see beautifully made-up people and wish I could have what they have. Nice skin, being the bottom line. So that I can wear make-up to enhance my features, smell nice and truly feel indulgent.  My idea of 'indulgence' is to lay in the bath tub with the shower on my feet and to just relax and smother myself in Hydromol, but this isn't really indulgence, rather than something I have to carry out every day just to cope and survive.

How do you indulge yourself?

Edit: I would only use different products if I was having a prolonged flare-free period, yet as it has been more than 6 months since my last 'clearer skin episode' I dare not use anything that could make my current situation worse. But thank you for your given suggestions, I may try them in the future! :)

Giving Up Is For Life - Not Just For Lent

My friend Hannah found herself inspired by my blog and recently created her own to raise awareness to chronic illnesses in general, and to discuss her own conditions. You can find her here: http://theretiredbridgeburner.blogspot.co.uk/

She made a post yesterday talking about the things that she has had to give up doing or have restricted her from being able to do. Instead of writing a comment, I thought I would talk about things that have impacted my own life from having severe eczema.

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Socialising

This is one of the things that has affected me the most, and is especially bad during periods where I'm at my worst. It's also these times when you find out who your real friends are as when you're on your own for what feels seems like a constant basis you become incredibly lonely and this can be self destructive if you let it be. A simple "how are you today?" suffices, as although you know you'll probably not be alright, having someone asking means the world, as it means they're thinking about you.

Akin to this, when I am at my worst and unable to leave the house but have made plans for certain events, having to cancel can be excruciating. It causes worry on my behalf that I'm letting the other people down, which in turn makes me worse, but if I do go to these events when I am experiencing a flare I know that it will cost me days to repair myself again.

Since having become allergic to fur bearing animals this can also be difficult as well as it means I am unable to go to other people's houses for fear that I will suffer a severe allergic reaction. Many people don't seem to consider the idea that I may require hospitalisation if a reaction was to occur and so I tend to have to skip events or ask for a more neutral setting which can cause unnecessary stress on both parts. It's also a real shame because I love animals, especially cats :(

Exercising

I've never been big on exercise but having heat induced urticaria has made it so much worse. Even walking around can be difficult, especially if I need to go up a hill. (I'm looking at you Lincoln Steep Hill!) Even swimming, which I used to do a hell of a lot of as a child, is out of the question as the chlorine affects my skin something chronic. It actually feels as though I'm having acid chucked at me and the drying-out of the skin affect is tenfold. Not ideal.


Going to Gigs/ Festivals

This is another one that saddens me. I used to give my all, sing and dance along to my faves like a complete loon, often while getting drunk. This just can't happen any more. Gigs are such hot and sweaty environments as it is without adding extra annoyances to my skin. So nowadays I tend to be selective of the gigs I do attend. Not just because of the effects on my skin, but also the driving factor... I get so tired, not necessarily because of the medication I take, but because of the level of bad health I have anyway.

Festivals are also a complete no-go for me now. Or at least the camping side of them. I've been attending Bloodstock Open Air since 2006 with 3 of the years being bearably fine to not have a shower everyday. Since my eczema took hold I can't even go a single day without washing the build up of skin and such off my body. I was fortunate to find a cafe nearby that offered a shower, albeit a rather disgusting shower, but it was still a step up from the portable ones at the festival. The lady who worked in the cafe was completely understanding about my condition and allowed me to have my showers for free. She is a complete sweetheart and I always attempt to pay her a visit for a nice cooked breakfast!

It's not just the shower aspect that does me in, it's the heat and humidity of the tent that also messes me up and the fact that I can't stick to strict routines with my skin. I mean, it takes me hours to get ready when I'm bad anyway so to add all the festival factors into the mix just isn't possible.

I now stay in a hotel.

Intimacy

I find intimacy to play a huge part with my skin. The heat of another person, even just sharing a bed with me is often too much to bare. Luckily we now live in a large enough house that if I am having a bad turn, which seems to be at least once a week right now, then Shane has somewhere else to sleep.


Work

When I was younger I was pretty manic. I woke up at 6am every day, went to college for 9am, picking friends up on the way, where I did an intense Foundation Art course, finished at 4:30pm, and worked until 10pm most nights of the week. Now I'm lucky if I can get through a 6hr shift at work. It really saddens me that I'll probably never be able to carry out a full-time roll again as I'm not one to want to sit on my backside day in, day out. I want to be out there making my own pennies, getting the most from life... but it just isn't meant to be :(


What I Can Wear

Back in't day I used to be somewhat of a Goth. I used to frequent corsets and long floaty skirts, adorned in black and dark colours. I had black hair and a face full of make up. I miss that version of me. I was a shy girl but my clothes didn't say that at all. Ah well.

Nowadays, although I still have something of a penchant for black clothes I tend to avoid them unless I'm having a good skin day because the skin dandruff can be pretty damn embarrassing. I also find that I can't wear scarves or necklaces because they irritate my neck something chronic. Annoying because I have a massive collection of gorgeous necklaces that I just stare at in wonder and lust! I also have to avoid light or pastelly colours generally as these also highlight my condition which is annoying because they'd mask the dandruff!

I also can't wear much make-up any more. Liquid liner and eye shadows are certainly out of the question as they now cause burning and weeping of my eyelids. Foundation just clings to the flakes and exacerbates the situation so that is also a no-go plus I think it is better for the skin to breathe. Nowadays I will wear mascara, brow pencil and a teeny bit of eyeliner at the edges of my eyes, but even then sometimes I can't do that either.

Crafting

I absolutely love crafting. I have so many creative ideas that I'd love to carry out but can't. I have an entire room dedicated to crafts in the hope that one day I will be well enough to do stuff. When I am experiencing a flare up crafting tends to make it worse. Doesn't matter what I do, it just causes me to flare. So sad as I have dreams of creating a business fueled by handmade goodies... Definitely still just a dream :(

Cleaning

My dermatologist actually wrote me out a certificate last June to say that I am unable to carry out household cleaning. As you can imagine everyone has been wanting to photocopy that and put in their own name. But the things is, I would clean if I could. Hell, my first job was cleaning my school for nearly 3 years! My allergies to dust are so severe that it brings me out instantly. Recently I've had to stop hoovering because it has created more dust settlement.

Travelling

This one also takes it out of me probably due to the stress of the situation. It can take me days to recover. I'd love to go to America but I honestly don't know if I could do it without scratching myself to death by the time I got there. Similarly, hot countries are out of the question because of the heat induced urticaria. It often annoys me when people say they're dreaming of sun bathing on a beach in *please insert hot country of choice* because I know that would actually be my worst nightmare.

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Wow. This post ended up being incredibly more lengthy than was intended but hopefully it gives more of an understanding as to why I can't do certain things. If anyone needs more of an explanation I'm more than willing to give it. You can also see how my condition has completely warped my identity, who I was, and the steps I have had to take just to cope, and why I am how I am now.

If you're an eczema sufferer what things have you had to give up?

Images Of My Eczema

So because I seemingly cannot order posts in a logical way I thought I'd make a post with pictures that I've taken of my skin. Sadly they're taken on my phone and my phone has a magic ability to try to make images appear smoother which is all fair and good for taking everyday photos but when I want to document things exactly as they are it isn't the best camera to use.

The thing that prompted me to make this post was that today when I showered I glanced at the plug hole and saw that it was completely blocked with my hair. I remove hair from the plug hole every day so I was absolutely shocked to see just how much hair had come off my head this morning. I wouldn't be surprised if I now have a bald patch somewhere :(

I put the disposable razor there for size comparison but it's still hard to properly show just how much it was

Image 1: Elbow flexture. It was much worse than the picture shows
Image 2: Side of my breast
Image 3: My chest
Image 4: My face on Boxing Day
Image 5: Another of my face flaring
Image 6: Bruising from over-scratching
Image 7: My thigh
Image 8: Flare
Image 9: Back of my elbow/ forearm
Image 10: Flare on face with swollen eyes
Image 11: My thigh
Image 12: Skin flare on tummy
Image 13: Skin flare and eczema herpeticum on my birthday
Image 14: Front of my thighs
Image 15: Seborrheic derm on my neck


I haven't posted these images for pity, but to show you how eczema can manifest itself and as I said at the start of the post, the images have had a smoothing effect on them because of the quality of my phone camera so it is not a true representation. The colours should be much more pigmented and the flaking and sores on the skin were much more apparent.

As you can also note, these were some of my better days as I was able to get dressed.

Living With Eczema: Part 1

As with any illness eczema can range from mild, moderate to severe but not many people seem to realise this. Here, I'd like to make a series of posts to talk about how eczema as a condition can be debilitating; making leading a "normal" life difficult.

I'll start off with my daily routine. It consists of waking up, often having to pry open swollen eyelids that have wept and become stuck together during the night, deciphering how much agony I'm in, and looking in the mirror to see the extent of the damage. The looking in the mirror part isn't the most constructive thing to do, but helps me to understand why I'm experiencing a certain amount of pain.

Next I'll pill pop some antihistamines and hop in the shower after I've slowly prised clothing, and even my hair, off my body that has become stuck to weeping sores. Depending on exactly how my skin is, a hot shower might be necessary to get rid of the stinging the water creates as it hits open sores from nightly scratching. Doctors always advise against this as hot water dries out the skin, but I find it helpful to give me some form of respite from the pain. It can take me hours just to shower when I'm in a bad way. Not just because of the pain or the worry of the pain, but because being as relaxed as I can be is beneficial for my skin. I find my only way to truly relax is to lay in the bath tub with the shower on my feet. Not exactly the best when the water bill needs paying, but I find bathing doesn't quite work for me.

After liberally applying Hydromol I get out and after getting dry enough, immediately slather my skin in white soft paraffin. It can take hours for the white soft paraffin to soak into my skin but I find that if I don't apply enough it just gets so sore and dry. Given the thickness of this ointment is a bit worrying that it still dries out my skin! If it's a particularly bad day I'll just whip out some Hydrocortisone, Eumovate or Betnovate steroid cream and even have to apply this to my face on a very regular basis. I haven't experienced any thinning of the skin per say, and have been doing this for more than 10 years.

On the days that my skin is so bad I often find that I can't actually get myself dressed because it is so sore, and covering myself up with clothing just exacerbates this. Instead I find I heal faster if I stay naked in a regulated temperature, applying white soft paraffin regularly throughout the day. Because I have to do this to cope, I find myself becoming increasingly lonely as I can't have visitors seeing me in this way. It also means that I am often off work ill due to my inability to get dressed, and the soreness would obviously prevent me from going.

Work have luckily been quite understanding and allow me to take shift swaps or holidays if I need it. This does however mean that I will never be able to withstand a full time job because I would require far too much time off. I'm happy with working short hours at one end of the week as the time around it allow for more recovery periods as it can take me hours and hours just to get myself ready to go somewhere.

I miss the days where I could get up at 8am, take a quick shower, or not even shower at all, just have a quick wash and be able to be ready to be somewhere for 9am. Nowadays I tend to wake up at 5:30/6am to ensure I can be ready for such a time. I envy those people who can just pop to the shop for some milk first thing in a morning, it just wouldn't be possible for me to do this. And it's such a simple thing. People take their quick routines for granted, not having to worry about the implications things can have on their health. I have to think about how I will dress that day not because of the weather, but what my skin dictates itself to feel most comfortable in.


I thought I'd also include this extract I wrote in an email to a friend when I was feeling particularly down as it gives an even better stand point:

"I just really am coming to the end of my tether with all this. One day I'll wake up and be absolutely fine, the next without warning I am so ill that I need emergency medical help. I'm not sure how much longer I can go on with this for. It impacts every single aspect of my life. Getting washed and dressed on a bad day can be one hell of a chore, not to mention time consuming and completely energy-zapping. Then there's work. No one wants an unreliable colleague, no matter how much they say they've got your back and wouldn't want to see you have to leave because you're a hard worker and you do a good job of it. But you're only a hard worker when you are well, that is the fine detail. My love life suffers greatly as well. Most days I can't even let Shane get close to me, or even to brush passed me accidently because it can trigger my skin to flare up, which sometimes means he will sleep downstairs, despite us having a king size bed because I just can't bare the extra warmth. I can't see my mum as often as I'd like because of my severe allergies to the animals. I can't even enjoy my hobbies any more because I'm allergic to textiles and of course, dust. Which in turn means, all my dreams and ambitions have had to come to a complete halt until my health improves, which seems ever unlikely with each passing day. I have to cancel so many plans and trips, which has meant losing many friends along the way as well.

I do try to keep optimistic with everything by being realistic but it is so terribly difficult when your illness defines you because there's no way you can bypass it. It can only be managed and coped with so much until you lose your motivation for everything, which I have done so many times now."

It's a tough life when the hard times take over.

Immunosuppressants

Sorry for the gap between posting, my mum came down for the weekend so it's been nice to spend time with her seeing as I rarely do get to see her because of my cat allergy.

I thought today I'd talk about immunosuppressants. This medication is only administered to eczema patients if the eczema is unresponsive to typical treatments such as steroid creams, antihistamines, oral steroids and protopic creams. The only thing about immunosuppressants, and the reason they're considered as a last resort, is because they dampen the activity of the immune system and are thus able to suppress the inflammation of the skin. Because they dampen the immune system this means that you are much more susceptible to side effects and infections... as I definitely found out.

I was first put on a course of Ciclosporin in 2010 after waiting for ages to get in to see the dermatologist here at Lincoln. These tablets can take up to 12 weeks to kick in, but for me it only took a matter of 2 or 3 days. My skin became completely and utterly transformed! I could go to the gym, I could do practically anything without my urticaria flaring. I even went home to see my Mum and managed to spend a night in my old bedroom. My skin didn't flare at all but my asthma was unbearable so I knew that would have to be the last of my overnight visits, sadly. But what you have to understand about my cat allergy is, even if I spend a little bit of time near them, or in a house they inhabit, within the next hour or so my skin would flare and my wheezing would become uncontrollable. Any longer, and it's a trip to A&E sadly :(

I remained taking these tablets for approximately 1 year, being monitored fortnightly for blood tests and my blood pressure. Some of the side effects Ciclosporin can cause include damage to the kidneys, cancers, high blood pressure and swollen gums. I did notice that my gums swelled a little and it was after a year of taking the medication that my blood pressure started to rise so I was taken off it.

Azathioprine was the next one they tried me on which did absolutely nothing for me after 12 weeks of being on it. My skin became bad because it wasn't being helped as much as it had with the Ciclosporin, so that was also stopped. They put me back on Ciclosporin at a slightly reduced dosage but it just didn't work for me as it had before. I was distraught. They kept me on it for over a year in the hope that it would start to kick in, but it didn't.

So that brings us to Summer 2012... where at the start of the year I was so ill I contracted the likes of eczema herpeticum and was put on steroids and antibiotics a fair few times as an attempt to control the eczema flares. We were also living in a house that was very damp and it didn't matter what we did, the mould would keep coming back, so enough was enough. I begged my dermatologist for another option. He wanted me to try Methotrexate but to me, the symptoms for that some how seemed so much more frightening than the Ciclosporin and Azathioprine, probably because it is only 50% effective in eczema patients... so we came to the decision to try me with Mycophenolate.

Mycophenolate didn't work either, but then I was only taking it for just over a week. In this week my health had become so bad that I had contracted eczema herpeticum AGAIN and had reoccurring tonsillitis. I also developed hand eczema at this point too. I really was in a low place.

We decided enough was enough with the damp and mouldy house we were living in, as obviously that wasn't contributing any good to my health, and the landlord was seemingly refusing to fix it. We moved into a newer, larger house in the middle of November which although I haven't noticed an incredible difference, is at least permitting me to go to work, which I couldn't in the months between September - November.

It was then in December that my dermatologist won me over to Methotrexate. Methotrexate is usually most used for conditions such as Rheumatoid Arthritis, and I actually know of a couple of people personally who do take it for that and don't have any problems. It was also initially used for cancer patients and it's function is to slow down, or halt the division of cells to reduce inflammation. By January I was beginning to lose quite a lot of hair and it was really upsetting me. I was losing daily what I would probably brush out in a week, so off it I came.

I'm still losing a significant amount of hair even now, and it's been around 3 weeks since I stopped the treatment. If anyone else has experienced hair loss from MTX how long did it take to slow down? I had to get quite a lot of hair cut off as a result because it had just become so fine and lank. I fought back tears when it was getting cut because as he handled it, I could see it was even worse than I thought.

So yes, that's my take on immunosuppressants. I would absolutely love if Ciclosporin worked again. Though perhaps it will do in a couple of years, who knows? Though I admit I don't miss taking the tablets. They're an inch long in size and stink of yeast!!

There was a picture floating about ages ago showing their size on a tape measure, but you can probably get the jist from these!

I'll talk about what treatment I'm currently undertaking in my next post :) Hope this has been helpful! xx

Have You Tried This, Have You Tried That

I know people are trying to be helpful but it becomes tiresome to keep reiterating myself to various different people. That was also the idea behind creating this blog so that I could just let people read for themselves about my condition.

My favourite is when random strangers ask you if you've tried [insert name of over the counter medicines] and when you sigh and say yes the smug look they beheld vanishes. Often these same people will be the ones who go "I know what that is, it's eczema" and you're like "yes, well done! Have a pat on the back, matey!" As I say, I know they're just trying to be helpful but it really isn't helpful for me. It's comparable to telling a person missing a limb that they're missing said limb. 10/10 for observation ;)

From this, I thought I'd talk about some of the conditions I do have and how they can sometimes conflict one another.

OK, so as the name of the blog suggests, I suffer from eczema. But not just one type, oh no, that would just be too simple for my body. No. I have a whole host of dermatitis conditions. I suffer from atopic eczema which as it suggests means I in turn suffer from atopy in general. Everything from hay fever to asthma to rhinitis comes under this heading.

I also have urticaria which manifests itself when heat is involved. This means exercise is usually out of the question, as well as being too hot generally whereby that meaning having too many layers of clothing on, or even on a summers day, I will, and do, suffer. It means for me that hot countries are completely out of the question. I went to Spain with my Mother one July and spent the whole time in sheer agony, covered in hives and not being able to get cool. It was a nightmare. Similarly, going to the gym and even walking up steep hill in Lincoln is somewhat of a task for me, whether it's a winter or summer's day because the heat will get me.

Allergies are another one of my pitfalls. I am severely allergic to dust mites. So much in fact that a proper reading couldn't be given because it was so high. This means that I find even household cleaning a chore and was even given a certificate by my dermatologist to say that I'm not allowed to do any household cleaning for 1 year. Jealous much? My asthma worsens and I come out in a rash, which then turns into eczema because I scratch it so much. It has also meant that I have had to reassess my career choice. My plan was to become a textile conservator, where I would clean and prevent long term damage to historical objects... Yes. You can see where this is going...

Cats, dogs and in fact any fur bearing animals are also out of bounds with my allergies. Annoyingly enough, I grew up with cats and looking back I did have a constant runny nose but that was all. Now, if I were to go to my Mum's house I would end up in A&E with an all-over body rash, an asthma attack and swollen eyes. It usually weeps too. Yum.

Patch testing also revealed an allergy to chromate but I don't appear to have had any problems with sitting on leather couches or wearing a leather jacket so I'm a bit skeptical. But it would make sense in terms of being a green dye within textiles, as I suffered A LOT when making a dark green dress for my Foundation Art year. I'm bloody proud of my efforts though!


Modelled by my lovely friend
Seborrheic dermatitis is another one. A lovely flakey one. And more recently I've developed hand eczema also known as dyshidrotic eczema. Apart from the soles of my feet, there is not one place that hasn't been affected by eczema. I also have Neurodermatitis in which I scratch all the time just because it has become a habit.

And as you can see from some of these conflicting conditions, it can make it hard to treat. I have found that steroid creams and slathering white soft paraffin all over is my best concoction to date. It REALLY helps me. Also sleep helps me too oddly enough. Even if it's just napping.


I hope this gives you all some more insight into some of what I go through. I could talk about it all day so I'll be sure to post about my coping mechanisms at a later date :)