A Cautionary Tale

I never thought that a chorus of a song, would actually be a night of my life.

This said night, happened around 8 months or so ago, possibly longer. It began as any other weekend, until my mum offered to babysit, which does not happen very often this called for a lot of alcohol!!

I will not lie, I remember getting ready, a few drinks then nothing. Until I came home, I felt hot and itchy. I thought it would be sensible to take a shower. This normally is sensible, but I learnt the hard way drunken showering is not my friend.

All was going well until, I was about to get out. I had managed to apply my Dermol 200, I had even got my towel. Then as I was getting out, I slipped.

I loved the song Torn by Natalie Imbruglia, I just never imagined that I would actually be, cold, ashamed, not so naked  but lying on the floor. As I lay I began to laugh, until I thought I had broken my leg, I really didn’t want to crawl and ring an ambulance, (I had clearly not washed of the Dermol off, so crawling on laminate floor would not be sensible) to be taken to the hospital I use for placements. I attempted to figure out if my leg was broken myself.

What I can only assume, was several hours later I woke. Still cold, not so ashamed more embarrassed, using my bath mat for extra warmth so not so naked, still lying on the floor. I have now learnt that extreme caution should be used when showering, showering drunk = never a good idea and, that what I thought was broken, wasn’t even bruised.

It’s just cream!!

There have been a few times I’ve wanted to scream the phrase “it’s just cream!!” at people.

Exams, is where this begins. Seriously what do they think is in my cream? Have I somehow managed to work how to cheat using my cream? It’s actually rather funny, watching some invigilator walk past, look at me, look at the cream then pick it up and put it on the floor. This normally ends with me sat in a hall, for 10 minutes with my hand in the air, the other one tapping the desk so I don’t scratch.

I went to film for a day time TV show, a couple of years ago. To talk about my much-loved subject of teenage sex/contraception. Whilst sat in a dressing, I was reminded that I could not take anything on stage. Sat under hot studio lights would not be my skins best friend. This was certain. No one seemed to know what to do, the producers had no idea if I could take my cream. I’m not sure if they thought I was somehow going to use this tube as a weapon? Maybe launch it at someone? Either way I opted to use Vaseline, keep the pot on me and hoped it worked. To be fair to Vaseline it did help, untill I got my cream.

If I had the energy I could use a pot as a weapon, or devise some method of cheating with my cream, but to be honest I’d just rather use it to stop me itching.

What is started will be finished

So my last appointment went really well!! (I know I’m amazed too) I saw a different consultant, who of course consulted with dr Lewis. When she came she said I wasn’t the person dr Lewis described as seeing last. Last time I went I think I may of threaded to scratch my hand off or something along those lines.

It’s nice to hear that they can see a difference in my general mood, although if you follow my other blog you’ll see it can vary quickly!! But as I’m going through my journey I’m gaining more control on my skin.

This means I’m free!! I’ve been discharged!! Of course i still have many creams and a routine, de Lewis is a phone call and appointment away and I’m well supported.

The only down side is the fact I’m now using an inhaler, but I’m not officially asthmatic, just needing some help.

Relapse and remission is something I know well, both mentally and physically. For now I have a some of remission, I’m under control 95% of the time, without ciclosporin or anymore UVB. This time the battle was difficult, and my face still has flare ups more than any other part of my body. I’m learning to cope better now though and I’ve ditched the camo make up!! My skin used to make me feel so vile but now when I look at the scars I’m reminded how hard I’ve worked, all the pain I endured and ive done it.

Long time no speak

It’s been a while since my last update, I’ve been writing a new blog which is helping my skin but in a whole other way.

So my last derm appointment was much the same, chat, get practically naked and then get new things, lots of new things.

Since coming off the ciclo I have been controlling my skin, minus the 5 months of hell that I endured before I came to this point. Since the giant abscess and UVB I’ve been putting this skin condition in it’s place!!

On the last appointment we spoke about the raised ‘lumps’ of eczema on my legs and my aggressively angry face. It was left at dermovate under duoderm and to try Protopic.

I did tried the duo but I can’t get on with it, it irritates me. It feels weird and generally not worth the hassle so I’ve decided against it as my legs don’t really bother me much now.

Protopic however, was sent from the devil! It really isn’t my friend. I used it everyday like I was told which for the first week or so was fine, skin was improving. I even had people commenting on how well my skin was and how clear it now looked. The problem came quite quickly, when I woke up my skin was angry, dry and sore. My eyes would swell and look purple, then I’d put Protopic on and it was fine after about 30 mins. This was a whole new nightmare!! I decided after a few weeks that I’d had enough, I stopped the Protopic by weaning down until I could eventually stop. It sent my face wild, constantly angry without Protopic. I endured it because that wasn’t as bad as the thought of Protopic forever.

My face now still has good and bad days, my neck is also becoming a permanent problem but I’m off Protopic. I now use argon oil nightly on my face and I find that it helps me, it burnt the first time I used it but now it’s totally fine. My eyes still become itchy, sore and puffy, I also have little areas of really dry skin on them. My neck at the back looks sore but doesn’t feel too sore, at the front however it’s sore! Steroid needing sore, it’s itchy and had changed colour. Not like the pale patches on my hand, it’s gone dark. Really dark.

The rest of my body is hit and miss sometimes it’s a few days and a little steriods but for the most it’s just epiderm and get on with life.

My second blog, I’m used for therapy during my CBT and support group, I normally wouldn’t be the kind of person to shout about how much ‘therapy’ had helped me but it has. As my anxiety levels have lowered I feel I’ve gained control of my skin, I’m not sure if it’s actually true but for now it works and I have a life beyond cream. I know I will never get rid of this, but getting control and that’s all I need.

Angie Chambers

** Guest post by a wonderfully talented lady Angie Chambers who wrote this beautiful poem**

Thought this might be a blessing to others. Writing sometimes helps me deal.

Eczema Baby

Inside I’m crying, outside I’m trying to be strong for my eczema baby.
She tells me that she asked Jesus to take the itch away, “God knows what He’s doing” is all I can say…and then we pray.
I say “rub, don’t itch”, and then I sigh. “I’m trying to stop, but I can’t!” She replies.
Its bath time and I see the terror in her eyes…water stings her skin so she screams and she cries.
She’s bitten her nails down to the bed ’cause she knows eventually they’ll get infected.
She scratches and scratches until she bleeds red; thinking she’s bad ’cause daddy and mommy “no scratching” they said.
Scabs on her feet, scars starting to form—nothing like my perfect-skinned baby when born.
Watching a child say “eww” when she sees my baby’s skin…a moment I soon won’t forget.
Evenings plagued with sleeplessness, as the itch gets worse at night. Pray for my baby as she fights this eczema fight!
Inside I’m crying, outside I’m trying to be strong for my eczema baby.
She tells me that she asked Jesus to take the itch away, “God knows what He’s doing” is all I can say…and then we pray.

Doctor, Doctor

So on the Facebook books groups there’s been a lot of discussion about doctors and derms, I thought I’d give you a few negative and positive experiences from the past that have made me giggle, cry and angry.

The first was a few years ago when I moved back into my old area after having my daughter. I went for a routine appointment in the hope of getting a cream to try before my derm appointment. I sat I. The waiting room, the doctors were running late as per usual which made me really itchy!! I finally got called in and took my seat next the doctors desk. He did the formal hello, why are you here speech and then I proceeded to tell him that I was at the time using double base and I hates it, and that I would like something new. It was at this point he asked to see the areas I applied the double base. I’m used to stripping off in front doctors, nurses, students and the odd chaperone so I jumped up and stripped off, he looked very scared and worried to begin with. It was then that he bestowed his wisdom on me, he told me that he thought I may have eczema…. At this point he printed off a fact sheet for me, so I humoured him and asked lots of questions. He wasn’t too clued up about skin conditions and tried his best to answer, after which he said he would refer me to a derm, I asked if I could continue to see the same derm I’ve been seeing for a number years. He suddenly went bright red.

Another experience I would like to share was one that made me extremely upset and angry. I was starting my first course of UVB and had an issue with cream, the appointment came through in a rush and I was told that I could only use diprobase, which I didn’t use, I had an infection coming and so thought I need to see a doctor ASAP!! I rang up and got an emergency appointment. I sat around waiting for ages, eventually got called in to the doctor. Told him I needed diprobase and some steroids, he then told me that eczema isn’t an emergency and I could of just waited for a routine appointment like everyone else. He went in to tell me that I had used an appointment that someone else who is actually poorly could of used. I have never felt so degraded (and I spend most appointments naked!!) I was upset and angry that he couldn’t understand how much pain I was in with the infection and how I really needed diprobase. He made me feel like I was overreacting, and the way he referred to eczema made me feel like he had absolutely no idea what he was talking about. I explained that I begin UVB the next day and I must have cream, he told me that I could of gone a few days without cream. When I told him I needed steroids he told me the infection hadn’t even come out and I couldn’t possibly know that. I left and asked to see another doctor immediately who was fab!! I saw that doctor again later on and requested that he read my blog and he educated himself on the issues surrounding eczema, pain and creams.

It’s not very often that I cry, but when I haven’t slept and I have an infection I’m a mess in the doctors room. This was one of those appointments but worse. I couldn’t get my breath, I couldn’t stop crying and I couldn’t speak. The GP took her time to calm me down, she got me a drink and really listened to me. She printed off all sorts of things for me to try. She was amazing, and there’s many doctors who totally get it.

I’ve had my fair share of doctors who look at me like I’m mental, and those who throw their arms around me and tell me they couldn’t live my life. Unfortunately in university they teach you how to treat your patient but they don’t teach how horrific some conditions can be. I’ve said many times before that people don’t understand severe eczema and the thoughts, pain and saddens it brings.

Insomnia, You Cruel Mistress

I haven’t slept properly in weeks!! Mainly due to the over whelming need to scratch. I think I may of mentioned before that I resorted to using a fork to scratch my back, mainly due to my short arms, lack of trees to be able to rub on and the other half being at work, desperate times and all that!

That ended in a broken fork, hardly any forks left for eating and severe pain when forgetting my fork is in the bed!! I have finally received my actual back scratcher (it’s taken AGES!!) this is a gift and a curse because I can now scratch myself perfectly but I also manage to hurt myself more.

My back is currently becoming worse each day, it’s the reason I’m awake at stupid o’clock several times a night but I can now sort it myself. The curse I was talking about, an abscess, not just any abscess but a huge evil twin style second head!! This is currently and issue but before Christmas it was an issue. I don’t want to be back at that point again (oddly I caused it with my nails and not attempting to use a fork) the pain was horrific, it smelt odd, it was got and I couldn’t get comfy at all!!

My sleeping pattern is the all over the place, I try not to nap in the day unless I’ve turned in the she devil and it’s in everyone’s best interest that I nap. I attempt to do exercise, if I don’t feel lazy or there’s no rubbish tv show on (I’m addicted to all sorts of rubbish tv!) and I haven’t got any sleeping tablets left :( I will go to the doctors soon if I can’t break this myself, but I’m really enjoying not having to be there every week! I haven’t seen my derm for months which is amazing because during the last few years I’ve been seeing her every few weeks. I was undress so much in that hospital it just became the norm to knock the door and strip.

I’m hoping that there’s going to be a miracle tonight and I’ll sleep like a human for more than a few hours. I won’t need to apply cream throughout the night and I won’t be tossing and turning, wish me luck.


The Movie Experience

Social anxiety, something many people with skin disorders suffer. It’s also something that you don’t expect to suffer. I was diagnosed last year and I was adamant the doctor was wrong, I didn’t know that I could suffer because no one talks about the psychological issues surrounding long term skin conditions.

I’ve said before many people will tell me they have a patch of eczema on their leg and not to worry about what other people say or think. I guess that’s ok if you do have a little patch but that doesn’t work for me.

It began with my face getting worse and my hand becoming regularly swollen, showing the discolouration. I didn’t panic too much to start with it was just annoying, until people actually did start to stare and point at me. It got to the point where I felt like everyone was Turing there heads to stare at me, like a film or bad dream when everyone’s heads turn to stare at you and there’s a thousand voices flying around you while you just stand there. It was horrible because I don’t show my scars in public, I can hide them easily but this couldn’t be hidden. The red lumpy rash on my face and swollen eyes couldn’t be hidden. I started to not want to go out when I was having a flare up and I thought this was normal, no one wants to be pointed at.

I didn’t realise it was a problem until I started having problems going out regardless of a flare up. My partner had noticed the problems a long time before I did! I spoke to the doctor and ended up crying for most of the appointment, I explained that I just feel like people are staring and I knew that they weren’t but I couldn’t help thinking they were and imaging the horrible things they must be saying.

I was given camouflage make up and the name of a mental health organisation to contact. I decided that medication wasn’t for me and I’m glad I didn’t take the medication, although it’s been difficult and I still have bad days I continue to push myself. I make myself get out and block out the world with music. I use mindful thinking everyday, if it’s good or bad and I’m beginning to use less camouflage make up during flare ups. People still stare and I’m used to that now, I know I can’t change that, I know that some people are just rude, there’s nothing I can do about the way people behave but I can change the way I think.

Social anxiety is truly awful and I became someone who isn’t me, I’m glad to say that I am much better now but this won’t go away, I just have to learn how to cope and how to be happy.

Below is a picture of my swollen patch work looking hand, I don’t have a picture of a flare up on my face (the main culprit) but my hand and they way it looks is a constant feature in my life now and causes anxiety from time to time.


The Sense Behind The Fear Of Showers

So I’ve been asked a few times how do I cope with a flare up?

Well I shall tell you all about the current flare up and I’ve managed to not chop my arms off :)

It began like the others, sore throat, cough and sniffles. Then came the itchy face and eyes which left me looking like the other half had punched me!! I knew it was going to be a big one as I was constantly hungry (no idea why it happens probably self pity) I had a weird pink patch on my left leg which began to swell and weep. I kept my leg up and started using elocon.

This carried on for a few days until my arms started to look grey around the elbow and I was in excruciating pain, I took codeine and put on my steripaste with bentnovate RD, I also took some telfast. My arms quickly became yellow, hot and swollen!! My back started to become itchy which is when the other half had to help apply creams and even helped me have a shower.

That brings me to the last post involving antibiotics, I don’t do anything special as far as magic cures. I’ve been asked if I use certain aloe Vera gel productions, I don’t because I personally don’t see how it would help but mainly I’ve got an allergy to aloe vera. I have used olive oil which lead to blisters and gluten free does help slightly but not enough to justify giving up bread. I drink lots and when I’m not having a flare up I exercise.

The one thing I avoid actually one thing I hate is showering or bathing, I don’t like baths due to all the creams I use I never feel clean. Showering hurts!! There have been a few times my partners found me crying in the shower. For me during a flare up simple daily life tasks are painful and cause skin tears, washing up I can avoid but showering I can’t sadly. I don’t have any top tips, I know I’m not alone in this issue, I’ve had messages asking how to not end up crying and I honestly don’t know unfortunately. I personally have to put my cream on first and use medicated shampoo to stop burning.

During my flare ups I try to rest as much as possible and as much as I don’t like it I use steripaste, it isn’t pleasant, it always dries out and it always take it off after a while! Another thing I find difficult with or without steripaste is sleeping, I can sort of get off to sleep but generally wake up scratching or in pain. I do use codeine before bed if my skins particularly bad, sometimes I need to use my sleeping tablets but I’m not a fan as they take a few days to start working.

We all have our own ways to deal with flare ups and top tips but for me it’s just pain relief and creams.

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