Skin Issues

Hi. My name is Claire and I am addicted to topical steroids. And I talk about it all the time. SAY WHAAATTTT! mean-girls-movie-quotes-63

No Seriously.

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I do!

I was doubtful before, but all the symptoms kind of match up. So what is Topical Steroid Withdrawal or Steroid Induced Eczema? (hellooooo copy and paste!) (http://www.itsan.org/resources/q-and-a/) Unless topical steroids were used to treat other conditions, a person with Steroid-Induced Eczema likely started out with true eczema or some other kind of rash. Topical steroids suppress the symptoms of true eczema for a time. Regular use of topical steroids causes the body to develop a dependency on the topical steroids. Once this happens, the rashes that appear are actually Steroid-Induced Eczema and signify the beginning stage of Topical Steroid Withdrawal. A person who sees these eczema-like rashes will likely apply more topical steroids to suppress what they believe is simply normal eczema. They will also probably need to use topical steroids more often to suppress the rash, or use a more potent topical steroid. At this point, the skin is addicted to the corticosteroids in the topical steroids and the person has Red Skin Syndrome. If this person stops using topical steroids now, they will begin going through Topical Steroid Withdrawal. This is basically my story. I’ve had eczema since i was born, it was pretty much under control, thanks to steroids until about 2 years ago. I realised that after applying Betnovate (a very potent steroid) my skin would be so think that it would be cut on anything. I realised that I needed to stop, or reduce my use. I began to develop adrenal fatigue depression, my depression got worse, and my skin got subsequently worse. I was put on oral steroids, but they did not help. I was unable to fully stop steroids until November 2014. Since the 20th of November, my skin has worsened dramatically, but i feel better, if that makes sense.

According to ITSAN the most common symptoms are: : What are the most common symptoms of Topical Steroid Withdrawal?

A: These symptoms occur after you stop using topical steroids. You may not experience all of these symptoms, although some people do. You may start experiencing some of these symptoms within days of stopping topical steroids; other symptoms may take longer to occur, or may not occur at all. You might experience some of these symptoms throughout the entire time or only during flares.

Red, burning skin: This typically appears within a week after stopping topical steroids but has been known to happen later on. It may cover a large area from the start or it may start as a small area, eventually spreading. One classic sign is red skin that stops at the wrist. This leaves the palm unaffected but arms and tops of hands red. It might take weeks for the red arm/white palm to appear as the redness spreads.

Raw, painful skin: It may feel like a bad sunburn and may be sensitive to even the lightest touch.

Eczema-like rashes: These rashes may spread from an area of skin that was originally affected by eczema or happen anywhere on your body. You may experience hives, very, very dry skin that has the look and feel of plastic, itchy skin, deep cracks, or tiny cuts in the skin, even in areas where topical steroids were never used. The skin is one organ, so when one area is medicated, it can affect all of your skin.

Edema: Swollen skin or swollen body parts containing fluid. Hands and feet often swell  during TSW.

Oozing skin: Ooze or serous exudate from the blood vessels may seep out of skin or form in small blisters (vesiculation). You may find a hard crust over your skin – this is ooze that has dried.  This is not the body “detoxing” but a leakage from the blood vessels due to their dilation.

Itchy skin: The itch is unbelievably intense and feels like it originates under the skin. There are hundreds of nerves possibly affected or paralyzed that run under the skin throughout the body. The recovery from steroid suppression may cause symptoms described such as a sleeping limb “waking up”, numbness, pin pokes, zingers, sparklers, ants crawling,  bee stings, jolts and moderate to intense skin pain.

Shedding or flaking skin: Many people find that they shed a lot of skin. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off.

Difficulty regulating body temperature: You may experience freezing hands, feet, or body and often get the chills; or you may feel very hot.

Enlarged lymph nodes: These are felt as lumps under the skin. They can be in the neck, armpits, groin, behind the knees or around the ribs. The lymph system helps detox the body of  bacteria and replenishes the blood with white blood cells. This is common during withdrawal and may not be a result of infection, however, if you are concerned, or if an enlarged lymph node becomes troublesome over time, you should consult a doctor.

Hair falling out: Some sufferers find that they get balding patches or their eyebrow hair falls out. This will grow back as healing takes place.

Eye irritation: If you have put topical steroids around your eyelids or nearby: eye dryness, redness, soreness, photo sensitivity, occasional blurry vision and excess mucus may be present. It is wise to get your eyes thoroughly examined by an optometrist when ceasing topical steroids, as in severe cases the effect of steroid withdrawal on the eyes can cause cataracts. (CAUTION: Face slapping is strongly discouraged as it may cause retina detachment.)

Energy levels: Exhaustion, fatigue and burn-out are very common  symptoms of TSW.

Sleep difficulty: Insomnia or difficulty maintaining a normal sleep schedule.

Appetite: Loss of appetite, weight loss or increased appetite and weight gain.

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(I will add more when my iCloud works)

As you can see it is an attractive condition…… I have experienced most of these, bar the balding patches and the edema (thank goodness).

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I currently can no longer have a shower, as it burns my shoulders. I wake several times a night, in oozy sweats. I take zinc, probiotics, apple cider vinegar, B vitamins, Candida support, Vitamin D, Omega 3, Montelukast, an anti-histamine, and anti depressants to name a few. I moisturise with shea butter, epa term, Argan oil, vaseline, and pure potions, and i bath in epsom salts. I can wear about 6 jumpers but i can still wear jeans (yes!) which a lot of tsw people can not. Currently, my neck skin will not let me wear scarves. It feels like a deep sunburn, and i’m not even in a flare! But it’s okay. It won’t last forever.

So why am i going through this crap? Since January, i have felt less depressed, had more energy, no longer have ibs, and my eczema is at times less angry, but more flakey. My body is slowly healing. I have seen, heard of and read literally hundreds of cases like mine, and around 95% have resulted in the person having no eczema, the rest have small patches of eczema that is treatable. My G.P. said it will be around 9 months until  my skin is better, but the forums etc say 1- 3 years. So we will see. I’m only 2 months in, but it has been a weird old journey. I think i’m a pretty mild case. I can still hold down a job (albeit less then 30 hours per week) but it is something.

Ultimately my life has to be on hold until my skin heals. And that’s okay. I’ve noticed that I very much want to deal with this on my own. I don’t like people seeing me all oozy, flakey and generally minging. The other day i was in so much pain i cried to my mum. No-one can do anything bar me and time. It’s not a sociable condition, and you worry if you will do something that will make you flare. I think it’s a condition that you kind of get used to. So yeah…this is me…flakey….oozy….and in pain for the next 9 months (at least), but ultimately it’s something I’ve got to go through and i just want to get on with it. I read the TSW forums everyday and know someone who is also going through tsw, that helps a lot. By knowing that my friends and family will be there even though i am ugly as hell, helps to :).

I was hoping that by writing a blog that i will focus less on my skin…we will see…..Skin is currently taking up 80% of my mental space

Love Claire xxxxxxxxxxx S

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It’s hard to dance, with a devil on your back

Well….where do i begin? hmmm…….i think i will begin with Friday.

As i was finishing work, i picked up a document which stated ‘Claire Probation Report. How to deal with the Irritation of Eczema’. This combined with what i have written in my last post, didn’t really make me feel great. I mean is Eczema an issue? Really? I understand that she may want to help, but it still so patronising. Oh. And leaving out for everyone (including the owners grandchildren) to see……Great….Thanks for that….Way to make me feel good about myself. NOT.

Seriously, Just leave it alone. You win. I will moisturise my hands in the bathroom. Whatever seriously love, you’ve just created a bigger whole for yourself. I’m not unhygienic, i’m not lazy, I’m not rubbish. You know what? I’m a pretty hard worker when i’m feeling 100% and if you don’t see that, then you never will. The only person who has to deal with this pain is me, so please just leave me to it. I will even apply suncream in the toilet, if that makes you happy. Sorry i’m just really low at the moment.

Another thing that happened on Friday. My sister (i.e. my greatest supporter) is moving to then U.K. This is the best decision for her. But to be honest, i have no idea how i’m going to cope without her. She is my best friend. She picks me up. I can’t imagine a life without my sister. But i will have to. I feel like i’m loosing my sister. hellloooooo tears. But i’m just being selfish.

I’ve finished another round of antibiotics which mean another thing….CANDIDA! If you don’t know what that means, it basically a fungus, that gives you headache, brainfog, general shiftiness, depression, thrush, fungal infections etc etc SO that’s another thing to try and clear?

This, plus the pain of my skin, meant i was angry on Saturday. With me, what follows anger is depression. YAY! WOOOO!

I was meant to see friends on Friday, (i was umming and urrringggg) then my mum said ‘URRGGHHHHHHH IF YOU ARE GOING TO USE YOUR CAR, I HAVE TO TAKE STEPHEN *MASSIVE SIGH*. So then i felt awful. So awful. That women can really guilt trip.  I then shouted ‘FINE. HE CAN USE MY CAR!. So i stayed in miserable, with Robin (who obviously wasn’t happy to be there).

RIGHT NOW I REALLY HATE PEOPLE. woo tears.

Saturday, was ok. I was angry for a bit and took it out on Robin, but i apologised. On saturday however, all skin hell broke loose. Insomnia, hot sweats, constant itchiness and pain. A HELL OF A LOT OF PAIN. It’s mainly my face, shoulders, neck and arms. Whenever i move it hurts.

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I also have no idea what is going on with my life.

Everyone is getting pregnant, married, buying houses and i have no idea if i want to do the Birkbeck course. I was looking at jobs today and there was one for a Child Development administrator, for 27K a year (more than double my salary) i was going to go for it but then i thought, now is not the right time. Now is not the right time to start a new course. Now is not the right time to move jobs, no matter how potentially (notice i said potentially) discriminatory my Manager is.

Right now with everything, I’m struggling to see a silver lining. I just want to cry. There are people with worse problems, i know, but i can’t help feeling sorry for myself.

Now it’s time to pick myself up. And maybe sing Pocket Full of Sunshine in the shower (if it doesn’t hurt too much.)

Love

Claire

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Dreams and Monsters University

Since this whole depression thing kicked off, i have always wanted to be a child therapist. It just felt right. I felt like it was what i was meant to do. It was who i was. Very much like the Monster’s University character Mike.

Mike had wanted to be a ‘scarer.’ He lives and breathed it.

Even though he thought it was meant to be it wasn’t. He wasn’t cut out for scaring.

Right now this is basically what i feel. I’m meant to be filling out a course application, but i can’t do it. It’s the right time, my job will let me do it, i’m still young enough to do; but something doesn’t feel right. I don’t feel ready right now. For the last two years i flew back and forth, and i ended up exhausted. Even though i should be doing it, right now, i don’t want to. I want to have a bit of a life, be able to afford things. The truth is i love education, and this is my dream. But right now, i’m not in the right place to do it. Somewhere it feels like i’m going against myself, letting myself down, as it is what i’m meant to be doing. I worry that if i take a year out, a lot will change, and i will not be able to do the course. I feel like it’s not the right time. Maybe i’m not cut out for therapy. But i have to be. I’ve fought so long, battled unemployment and depression to go to Tavistock.
The truth is, it is so hard to put things on hold. It’s very much a battle. It is who i am. But i am also not ready for it (if that makes sense). Maybe i have to find out if i really am cut out for child therapy. Maybe i need to sort the last of my demons out. Maybe i need to find a new job. Maybe i need new life experiences.

But the truth is,

We are all capable of achieving whatever we wants. But it is whether you are ready.

Like how do you know if it will turn out right? How do you know if it was meant to be. Life is weird. I guess as you grow and develop, you learn how to trust your instincts. The truth is I am petrified. I am petrified that i can’t do it. I am petrified by the fact my brain tells me on a daily basis that i can’t do anything. I know i can do better, but i don’t quite believe it.

I guess, i am on a Journey.

Sorry for rambling a bit!

I suppose the question i need to answer is, why am i here? What am i meant to do?

Love

Claire

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Eczema Tales

I have a confession. I have Eczema. You probably knew that huh? Yeah that wasn’t the confession. The confession is that it’s not eczema. It’s Topical Steroid Withdrawal. And i pretty much look like this most of the time.

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See? I have to bandage my hands sometimes, i have to wear white gloves, have baths everyday, and my mum has to sometimes wash my hair, as my hands hurt too much. I wanted to add pictures of my hands, and arms but my photo stream isn’t working…pffttttt…..but yeah….the photo stream is not the worst bit.

The worst bit is the stares, the ignorant comments:

‘girls look plain without makeup, come to think of it, Claire why don’t you wear your hair down?’

“My neck is flaring so anything that touches it hurts.’

‘Oh, well you should.’

So far the worst comment

‘Claire, it is inappropriate to moisturise in front of parents and children.’

Okay, so i will now have to moisturise in the bathroom at work. Yay.

At first these comments made me feel like monster. Some days i feel like a monster. Some days i am in pain all the time, some times i cry. But you know what? It’s okay. Because someone out there has it worse. And you always know what. It’s not my fault. The 3rd thing? If your not going through this, not a family member or a close friend, then you don’t get a say on how i look. You do not get to contribute to my already wiltering confidence. My skin condition, has never bothered me before, it has only started bothering me since it has worsened. My skin is addicted to steroids pretty much, that why my skin looks the way that it does.

Yes comments hurt. But maybe this process will help me learn more about myself. I’m considering whether to send my DNA off, to see if i have the MTHR FR gene (yes it’s really called that). If i do have this gene, it will explain my adrenal fatigue, my eczema and my depression. It will help me find other ways to try and beat all of them. Whenever something goes wrong i blame myself. When in fact, it’s not my fault. There’s a time to feel sorry for yourself, and i have done that. Now it’s time to get my old self back and fight back.

The truth is, i feel rubbish. i feel worthless. I feel pathetic. (Yay depressive episode). But i have amazing people, who’s opinions are more important than the bad one’s.

So here is to smiling through the crappy times and finding the silver lining in every cloud.

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Love

Claire

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