Wow, sorry for my lengthy absence but I think I can be excused seeing as I'm now living in Leeds and only just got my internet back this morning!
The eczema herpeticum was short lived and only lasted for a week at most. The Aciclovir tends to do a decent job of kicking it in the bum and stopping it from progressing further. Since then though my skin has been suffering from a rash which has probably developed into an infection but I haven't signed up to a doctors yet so there's not a lot I can do about it other than try to manage it myself. I do think a lot of what I'm going through now is just from the stress of moving and starting a new job (first day tomorrow!).
I am having up and down days, most notably this weekend where I attended a family wedding and managed to last an entire 11 hours before I just had to succumb to the itch. My poor car is a bit of a mess now. Please hoover it Shane if you're reading xD but it was impressive nonetheless!
I missed informing you of my 11 months of steroid withdrawal which happened 3 weeks ago now but I will be coming up to a year soon and I'm not in the best shape, but I am still managing which is good enough for me.
Shane's phone seems to be rubbish when I want it to depict my redness but when I want to take a nice photo of the two of us I'm suddenly redder than ever!
NSFW so under a cut.
Hope everyone else is well?x
P.S. this is my 100th post!
Showing posts with label steroid creams. Show all posts
Showing posts with label steroid creams. Show all posts
Monday, 12 May 2014
Thursday, 12 December 2013
December Skin: Day 205 TSW
How is everyone?
I'm not gonna lie, life is fairly decent right now. I'm working 5 days a week with ever increasing hours as the Christmas period gets into full swing. I feel busy and quite satisfied that I'm able to do more for myself and others. I am however still getting random flaring and lots of dryness. I took some quick photos this morning but they're not very good at pointing out the red bumps on my face so you'll just have to take my word for it that I have an itchy, red, bumpy face. Oh and there's a coldsore on my lip. Bloody thing!! That just randomly decided to pop up during my shift at work on Monday and is still lingering despite me taking Aciclovir daily. At least it is only isolated to my lip which is a very good thing, as we're all more than aware of my history of eczema herpeticum!
Face.
Leg.
Excuse the mop and bucket in this photograph. I just wanted to show you quickly that my legs are still going, and I'm still picking. Stupid girl! Both legs are the same.
Arm.
Now this is the biggest surprise. The photo is a bad depiction but my arms look just like my legs right now. They're absolutely covered in scabs that just won't go away!! I've tried not moisturising them but find I still scratch away at the dry skin, and moisturising them but I'm still scratching away... I just can't win. They and my face are the biggest sources of annoyance right now, especially when I catch customers staring at them as though I have the plague. I need me a new job!
Overall I'm not bothered what people think of the way I look. I've covered this point a lot throughout the time of my blog but I reached a plateau earlier this year, around the time that this blog came into fruition and I just couldn't care less about how my condition may appear to others. I learnt that this is me, I can't help the way I look, I have an illness and if you don't like my inability to wear make-up and the lack of embarrassment I have of myself then please go away. You're not helping, you're just being judgmental of something you know nothing about.
When you do find yourself bound to illness you learn to cherish the smaller things in life and that all of the superficial stuff is exactly that, it just isn't worth dwelling on. Rant over. Haha!
Tuesday, 14 May 2013
Is My Medication The Cause Of My Eczema?
Been doing more thinking about this "red skin syndrome" malarky to try to solve the mysteries of when did this happen, and more importantly, how did this happen?
I was talking on the phone to my Mum regarding when my eczema, asthma and allergies first started. She said my eczema started when I was a child, however she can never remember it being severe in any way, shape or form. It was mostly just sensitive, dry skin to which we stopped using bubble baths and switched to hypoallergenic products.
It was asthma that was most prevalent, often resulting in trips to hospital and taking oral steroids to help return my lungs to a more normalised state. I distinctly remember these times well. I would be at my Nana's house and she would dissolve the nasty little red tablets in some water in the "special medicine glass" to form the most vile pink fluid you will ever taste, which was always far too much for me to neck down, and would always proceed in me gagging. Memories to treasure, huh?
My allergies were also never really that bad. Although I did always have a snuffly nose and would produce more snot than is depicted as normal. Although I do distinctly remember picking up my friends' pet rabbit, and within seconds my eyes swelled shut and I was so itchy and sneezy and my asthma went mental. So never again did I pick up a rabbit. But I do remember going on trips to farms and picking up various animals and never having a problem. Same goes with cats. Misty was around before I was born. So I've always grown up with cats around me. In fact, my brother had gerbils too, to which I never reacted.
Fast forward a few years and I would often get small patches of eczema on my inner elbows, my upper lip and sometimes around my eyes. It was an annoyance, yes, but nothing that a bit of E45 and hydrocortisone couldn't help. I'm unsure as to whether my hormones played a part in this or not but I can't figure out what would have been the initial trigger.
Then we come to me aged 16 where I was faced with the awful situation of my Grandfather's funeral and meeting my biological Father for the first time in my life. I don't remember my skin being bad on the train journey down, though I do remember my asthma worsening as we changed trains on London Underground. I just remember the morning of the funeral the entirety of my face, neck, chest and arms were coated in a weeping, swollen rash which was so bloody itchy I couldn't stand it. E45 worsened it and from then on I've avoided it like the plague.
Now whether it was the stress of the situation that brought on the flare, my Grandad's extremely dusty home, the feather duvet's, the woolen carpet, or a combination of these things... I just don't know. It wasn't until the following day I believe, that I was admitted to hospital with an asthma attack. My skin had worsened so much and oozed and was burning and infected, covered in scabs that would just reopen and make me stick to the bed sheets.
It took around 6 months for my skin to return to normal after that, applying a zillion different steroid creams during this period. Then it returned to its "mild" form, not bothering me again for another 3 years. [Although it was during this "resting" period that I developed my heat urticaria. I came out in hives when on holiday in Spain and from then on whenever I got too hot would break out in hives.]
It was then in January of 2009 that it all kicked off again (for reasons I can't quite put my finger on...) and so I returned to using steroids, but this time more potent steroids. I was given oral steroids and antibiotics to prevent my reoccurring infected eczema. Unlike before where it was on my face, neck, chest and arms, it spread down my torso and then down my legs leaving no part of me unscathed.
I assume in the first instance of having eczema that it was down to a severe allergic reaction as why else would it have appeared on my most visible parts? I can only think that it was due to an airborne allergen... possibly the sheer levels of dust? The second time however, I really have no clue.
I have been in the same state since 2009 with only small breaks of respite. As I've mentioned before I've undergone all sorts of treatments, had allergy patch and IgE testing and nothing has really come to light properly, other than my obvious dust and animal allergies.
So could my eczema be a by-product of the steroids? Perhaps it was the steroids that caused me to get eczema to start with if I took them frequently for my asthma troubles. I just don't know and I need some answers soon.
Does anyone else who has suffered from Red Skin Syndrome have severe allergies? I need to help make a distinction I think.
Forever pondering...
I was talking on the phone to my Mum regarding when my eczema, asthma and allergies first started. She said my eczema started when I was a child, however she can never remember it being severe in any way, shape or form. It was mostly just sensitive, dry skin to which we stopped using bubble baths and switched to hypoallergenic products.
It was asthma that was most prevalent, often resulting in trips to hospital and taking oral steroids to help return my lungs to a more normalised state. I distinctly remember these times well. I would be at my Nana's house and she would dissolve the nasty little red tablets in some water in the "special medicine glass" to form the most vile pink fluid you will ever taste, which was always far too much for me to neck down, and would always proceed in me gagging. Memories to treasure, huh?
My allergies were also never really that bad. Although I did always have a snuffly nose and would produce more snot than is depicted as normal. Although I do distinctly remember picking up my friends' pet rabbit, and within seconds my eyes swelled shut and I was so itchy and sneezy and my asthma went mental. So never again did I pick up a rabbit. But I do remember going on trips to farms and picking up various animals and never having a problem. Same goes with cats. Misty was around before I was born. So I've always grown up with cats around me. In fact, my brother had gerbils too, to which I never reacted.
A face full of make-up, in my "Goth" attire, aged 15. Note the clear, pale skin :(
Fast forward a few years and I would often get small patches of eczema on my inner elbows, my upper lip and sometimes around my eyes. It was an annoyance, yes, but nothing that a bit of E45 and hydrocortisone couldn't help. I'm unsure as to whether my hormones played a part in this or not but I can't figure out what would have been the initial trigger.
Then we come to me aged 16 where I was faced with the awful situation of my Grandfather's funeral and meeting my biological Father for the first time in my life. I don't remember my skin being bad on the train journey down, though I do remember my asthma worsening as we changed trains on London Underground. I just remember the morning of the funeral the entirety of my face, neck, chest and arms were coated in a weeping, swollen rash which was so bloody itchy I couldn't stand it. E45 worsened it and from then on I've avoided it like the plague.
Now whether it was the stress of the situation that brought on the flare, my Grandad's extremely dusty home, the feather duvet's, the woolen carpet, or a combination of these things... I just don't know. It wasn't until the following day I believe, that I was admitted to hospital with an asthma attack. My skin had worsened so much and oozed and was burning and infected, covered in scabs that would just reopen and make me stick to the bed sheets.
It took around 6 months for my skin to return to normal after that, applying a zillion different steroid creams during this period. Then it returned to its "mild" form, not bothering me again for another 3 years. [Although it was during this "resting" period that I developed my heat urticaria. I came out in hives when on holiday in Spain and from then on whenever I got too hot would break out in hives.]
It was then in January of 2009 that it all kicked off again (for reasons I can't quite put my finger on...) and so I returned to using steroids, but this time more potent steroids. I was given oral steroids and antibiotics to prevent my reoccurring infected eczema. Unlike before where it was on my face, neck, chest and arms, it spread down my torso and then down my legs leaving no part of me unscathed.
I assume in the first instance of having eczema that it was down to a severe allergic reaction as why else would it have appeared on my most visible parts? I can only think that it was due to an airborne allergen... possibly the sheer levels of dust? The second time however, I really have no clue.
I have been in the same state since 2009 with only small breaks of respite. As I've mentioned before I've undergone all sorts of treatments, had allergy patch and IgE testing and nothing has really come to light properly, other than my obvious dust and animal allergies.
So could my eczema be a by-product of the steroids? Perhaps it was the steroids that caused me to get eczema to start with if I took them frequently for my asthma troubles. I just don't know and I need some answers soon.
Does anyone else who has suffered from Red Skin Syndrome have severe allergies? I need to help make a distinction I think.
Forever pondering...
Friday, 10 May 2013
Red Skin Syndrome
So today I'm in a state of turmoil and curiosity has finally gotten the better of me. I keep getting hounded by people telling me I have this "red skin syndrome" which to those not in the know, is essentially what happens when you've used steroids for years; your skin becomes addicted and completely dependent on the medication.
The typical symptoms of this are:
Now, I'm quite a stubborn person in that when I know I probably wouldn't be able to make something work I'm reluctant to give it a go, however the symptoms are so similar to what I'm going through I'm just at a bit of a loose end.
The only way to stop an addiction is to go cold turkey, no steroids can be administered whatsoever to give the body a chance to recover and cure itself. Many people who undergo this withdrawal find that depending on how long they've taken steroid medication it can take months and even years and years to finally come into remission. They also find that they will need to take a large chunk of time off work because it is virtually impossible to attend.
I'm already fully aware of just how vicious eczema can be as I've spent massive portions of time off from work, university and college in the last few years because my skin is just uncontrollable, inhibiting me from being able to get dressed and even the ability to concentrate. You can see in my archived posts, specifically the ones entitled "Living With Eczema" just what I have had to go through. I'm not sure if I would want to relive all that on a longer term basis because I really have done so much to pull myself out from that pit of depression. I don't want to endure it again.
My only problem is it's been bad enough to try to rebuild my sick record from having all the time off. My employers know the extent of what I go through but I just wouldn't be able to function without my job. Shane and I struggle enough to pay our bills as it is with barely a penny left over to enjoy ourselves, so without a job we'd be in short, screwed.
So this is why I'm in a state of turmoil. I'm not sure I would be able to give steroid withdrawal my full commitment, and I definitely wouldn't be able to give up my steroid inhaler, but I must say that it does seem likely that it is what I have.
At the moment there are only a couple of doctors who believe in it (based in America I think...) and I have mentioned it to my dermatologist in the past but he's just shaken it off. It is only a recent finding so I'm not too sure on the credibility, though no doubt I'll get loads of you telling me that it does work. Yet, if this were the case, why don't more doctors believe in it?
You can read more about it here.
Images of Kelly Palace, before and after, pinched from the ITSAN website.
The typical symptoms of this are:
- Red burning skin, hot to the touch, that spreads over the entire body, despite it originating in smaller places with extreme itchiness that cannot be satiated.
- Skin that weeps and oozes.
- Eczema type rashes that spread over the skins surface.
- Hives/ Urticaria.
- Difficulty regulating body temperature with freezing hands and feet and you may often suffer all-over body chills.
- Extremely dry skin that sheds like crazy and needs to be vacuumed daily.
- The skin is so sensitive that you can become allergic to basically everything.
Now, I'm quite a stubborn person in that when I know I probably wouldn't be able to make something work I'm reluctant to give it a go, however the symptoms are so similar to what I'm going through I'm just at a bit of a loose end.
The only way to stop an addiction is to go cold turkey, no steroids can be administered whatsoever to give the body a chance to recover and cure itself. Many people who undergo this withdrawal find that depending on how long they've taken steroid medication it can take months and even years and years to finally come into remission. They also find that they will need to take a large chunk of time off work because it is virtually impossible to attend.
I'm already fully aware of just how vicious eczema can be as I've spent massive portions of time off from work, university and college in the last few years because my skin is just uncontrollable, inhibiting me from being able to get dressed and even the ability to concentrate. You can see in my archived posts, specifically the ones entitled "Living With Eczema" just what I have had to go through. I'm not sure if I would want to relive all that on a longer term basis because I really have done so much to pull myself out from that pit of depression. I don't want to endure it again.
My only problem is it's been bad enough to try to rebuild my sick record from having all the time off. My employers know the extent of what I go through but I just wouldn't be able to function without my job. Shane and I struggle enough to pay our bills as it is with barely a penny left over to enjoy ourselves, so without a job we'd be in short, screwed.
So this is why I'm in a state of turmoil. I'm not sure I would be able to give steroid withdrawal my full commitment, and I definitely wouldn't be able to give up my steroid inhaler, but I must say that it does seem likely that it is what I have.
At the moment there are only a couple of doctors who believe in it (based in America I think...) and I have mentioned it to my dermatologist in the past but he's just shaken it off. It is only a recent finding so I'm not too sure on the credibility, though no doubt I'll get loads of you telling me that it does work. Yet, if this were the case, why don't more doctors believe in it?
You can read more about it here.
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.
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