From March 1st I'm going to start documenting my skin via photographs every morning when I wake up to every night before I go to bed. By doing this I'll be able to show you all, and myself, just how my skin goes during the day. At the end of the month I'll compile them all and make a gif image to show you what happens to my skin over the course of a month.
I'm also looking to fine tune my diet somewhat as I haven't been able to shake the bad habits off since Christmas time. I still have a tonne of sweets and the like in the cupboard but I'm just going to ignore their existence for now ;) I've also noticed that I'm starting to put on a bit of weight again, not really a lot, but my size 8 trousers (I don't even know how I even got down to wearing an 8?!) are beginning to get a little tight on the old tum. Everyone bangs on about the benefits of healthy food in eczema patients so I'll get back onto the wagon, even though I'm not entirely convinced it fully helps me, seeing as I suffer primarily from environmental allergies but if it makes me healthy then that's good.
If anyone wants to drop me in any recipe ideas that'd be fantastic! We tend to eat the same things over and over and it can become a bit tedious. From what I can tell the only things I can't have are spices and possibly eggs as I've (only sometimes) flared when having had egg sandwiches and pancakes, and definitely flared from eating shop bought birthday cake and quiche. Although recently I was alerted to this article: 'House dust mites could be a cause of food allergy' which was a very interesting read seeing as I know that I am extremely allergic to dust mites and flour was found in the birthday cake, quiche and pancake. Funny huh?
Tuesday, 26 February 2013
Friday, 22 February 2013
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.
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?
Tuesday, 19 February 2013
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! :)
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! :)
Saturday, 16 February 2013
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?
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.
---------------------------------------------------------------------------------------------------------------
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.
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?
Tuesday, 12 February 2013
Living With Eczema: Part 2
The thing that people don't seem to realise with eczema is that it really can be so severe that it is classed as a disability.
In my individual case, my skin gets so sore and weepy that I can't put clothing on because it just makes it all the more worse, in both the sense of heat, and also because it irritates and dries out my skin further. When the skin weeps it often dries with fibres stuck inside it, which is not exactly helpful to the wounds to have a foreign body lodged within them. So I find my best way to deal with a bad flare is to just spend the day being naked. This itself causes a whole array of problems with health and safety and the fact that I cannot leave the house, or generally carry out day-to-day activities. Walking about can also be difficult if it is bad on the backs of my knees and bending down and such is even worse.
It isn't just because of the fact that I need to remain naked that it causes problems. When I am in such a bad state (you must have seen videos of little children on Youtube crying because of the itching and pain) I am going through the exact same thing. I am in torment because of the itching and pain as at the time there is just no escape, once it has you in its grips, it has you good. It means I am unable to summon the will or the physical ability to do anything because it has such a hold over me. Now for many people who simply say, just don't scratch, or whatever... it just isn't that simple at all.
From what I can assume, and from how others have described how they think it is, a lot of people have the belief that it must be similar to a rash, or insect bite where you can't stop scratching it. In a way yes, it is like this, but at the same time it's so much more complex. Firstly, the itch isn't confined to just one area, it spreads like wildfire all over your body. Secondly, their scratching usually won't cause deep gouges, scratch marks, weeping skin or scabs; it will just remain as a red rash.
The other thing people, friends, acquaintances, even close friends, do not realise is how long it will actually take for me to get up and ready. I know I touched on this briefly in Part 1 but I didn't go into its full extent as much as I intended to. A day where I know I will have work, for example a 5pm-9pm shift, will have me waking up at around 8am, showering and spending the entire day slathering myself in moisturiser just so I know I can be comfortable in my clothing. That is an entire day completely wasted because of my extremely necessary routines which is incredibly scary to think about.
Coming home from work is no different. As soon as I walk through the door I'm in the shower, spending a large amount of time just laying in the bath tub trying to relax myself. I then cover myself in moisturiser for the rest of the evening and turn in for bed. The next day is either usually spent carrying out the exact same routine, or as a recovery day, where I will spend the day trying to preen my skin to a comfortable state for work the following day.
It ain't a good way to live, but it's how I have to live unfortunately. The days where I have to quickly carry out my routine are the days where I definitely pay for it later on. I generally end up spending days and days trying to recover again.
So there you have it. Those who don't have eczema or a chronic illness may consider yourselves so lucky that you are able to work a full time job and balance your busy social and family life. I know that I took it all for granted at the times when I was well enough.
x
In my individual case, my skin gets so sore and weepy that I can't put clothing on because it just makes it all the more worse, in both the sense of heat, and also because it irritates and dries out my skin further. When the skin weeps it often dries with fibres stuck inside it, which is not exactly helpful to the wounds to have a foreign body lodged within them. So I find my best way to deal with a bad flare is to just spend the day being naked. This itself causes a whole array of problems with health and safety and the fact that I cannot leave the house, or generally carry out day-to-day activities. Walking about can also be difficult if it is bad on the backs of my knees and bending down and such is even worse.
It isn't just because of the fact that I need to remain naked that it causes problems. When I am in such a bad state (you must have seen videos of little children on Youtube crying because of the itching and pain) I am going through the exact same thing. I am in torment because of the itching and pain as at the time there is just no escape, once it has you in its grips, it has you good. It means I am unable to summon the will or the physical ability to do anything because it has such a hold over me. Now for many people who simply say, just don't scratch, or whatever... it just isn't that simple at all.
From what I can assume, and from how others have described how they think it is, a lot of people have the belief that it must be similar to a rash, or insect bite where you can't stop scratching it. In a way yes, it is like this, but at the same time it's so much more complex. Firstly, the itch isn't confined to just one area, it spreads like wildfire all over your body. Secondly, their scratching usually won't cause deep gouges, scratch marks, weeping skin or scabs; it will just remain as a red rash.
The other thing people, friends, acquaintances, even close friends, do not realise is how long it will actually take for me to get up and ready. I know I touched on this briefly in Part 1 but I didn't go into its full extent as much as I intended to. A day where I know I will have work, for example a 5pm-9pm shift, will have me waking up at around 8am, showering and spending the entire day slathering myself in moisturiser just so I know I can be comfortable in my clothing. That is an entire day completely wasted because of my extremely necessary routines which is incredibly scary to think about.
Coming home from work is no different. As soon as I walk through the door I'm in the shower, spending a large amount of time just laying in the bath tub trying to relax myself. I then cover myself in moisturiser for the rest of the evening and turn in for bed. The next day is either usually spent carrying out the exact same routine, or as a recovery day, where I will spend the day trying to preen my skin to a comfortable state for work the following day.
It ain't a good way to live, but it's how I have to live unfortunately. The days where I have to quickly carry out my routine are the days where I definitely pay for it later on. I generally end up spending days and days trying to recover again.
So there you have it. Those who don't have eczema or a chronic illness may consider yourselves so lucky that you are able to work a full time job and balance your busy social and family life. I know that I took it all for granted at the times when I was well enough.
x
Saturday, 9 February 2013
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 :(
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.
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.
Friday, 8 February 2013
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'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.
Tuesday, 5 February 2013
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!!
I'll talk about what treatment I'm currently undertaking in my next post :) Hope this has been helpful! xx
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
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