Hi guys, this blog is long overdue an update!
So what's going on with me?
Well I'm afraid to say, it isn't exactly great news. I've actually been putting off talking about it because I don't want to discourage others. But about a month ago, I began to get a really itchy face and the band around my tummy where my top had been tucked into my skirt also triggered a heat rash reaction, due to the hot weather we have been experiencing as of late.
I figured with time and patience it would disappear on it's own, as it usually does. However a month later it has instead spread all over my body; my face, neck, chest, arms, torso, legs... everywhere.
I went to a walk-in-centre and was given a weeks worth of antibiotics as we both assumed it to be an infection. They didn't even touch it. This Tuesday just past I went to the doctors and all she could offer me were steroids, emollients and an extra antihistamine because she felt it looked more like an allergic reaction. Not great. At this point I'm actually debating using oral steroids just to help clear my system but the other part of me is screaming 'NO!' because it would ruin years of hard work if I were to rebound, and also get eczema herpeticum.
I'm currently having to take time off work because it is virtually unbearable. I think part of this flare-up is due to the fact that I now no longer have time to heal, because I work a full time job and am always on the go. So having a few days off should in theory help me... but it just seems to be getting worse. The heat is not helping and I'm just a poor tired mess.
Edit: It turned out to be a washing detergent allergy!
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In other news. The last time I went to see the dermatologist, back in May, she told me that they had forgotten to contact me 1.5 years ago to tell me that I was severely deficient in Vitamin D. I can't even. Sounds about right though...
-----
On a slightly more positive note; another thing that happened that I should really have blogged about sooner was that a fellow from the BBC contacted me in regards to making a radio documentary about eczema sufferers and what we really have to go through etc. I was invited to the studio in York and nervously gave my view point. There was a lot I didn't manage to say as I tend to burble when put on the spot and probably also a lot I didn't put across properly... but if you fancy a listen it is airing on bank holiday Monday (29/08/16) at 09:00 on http://www.bbc.co.uk/radiosheffield and later on at 18:00 on http://www.bbc.co.uk/radioleeds.
Alternatively you can catch it via this link after 10:00am Monday morning and it will be available for 30 days.
Hope everyone else is well!
x
Thursday, 25 August 2016
Sunday, 22 May 2016
3yrs Topical Steroid Withdrawal
Hey everyone!
Today marks my 3 year milestone of ceasing the use of topical steroids and other steroidal treatments. I won't say I'm healed... not by any means. But I am able to live life comfortably again and without much disruption.
My face and neck area are still my most problematic areas but they have been since the age of about 16. They were also the areas where I used the most creams and ointments so it makes sense really for it still to be over-sensitive and quick to react to potential triggers and allergens.
I'm still on Ciclosporin but I've dropped my dosage to 250mg, down from 350mg, and though my skin hasn't completely cleared up, as it did the very first time I used it, it's still helping me on the days where I do struggle.
I also had a cold sore this past week and decided not to take as much Aciclovir as I usually do, just to test the waters and see if it would spread and turn into eczema herpeticum. Luckily my prayers were answered and it didn't spread at all from my lip. It did however take longer to heal and I kept managing to knock off the scab, but my body finally seems to be helping itself out. My vegan diet still isn't perfect and there are still refined foods in there but I am choosing more whole food options where I can.
I've also started to exercise! This was a huge problem for me for years before I even discovered TSW. I mean I've never been into exercise as I was the fat, unfit kid at school who was self conscious and didn't care for getting hot and sweaty and then having to traipse around for the rest of the day feeling disgusting... but it got to a point where my skin just couldn't handle sweat. I had heat urticaria and it would sting, burn and itch like hell if I so much as became slightly too warm. So I'm pleased to say I can now sweat and do exercise. My skin does suffer sometimes, for example when I go out for a run, the elements are not usually in my favour and I find that the wind can cause my skin to flare and I then spend the next few days with a red blotchy face. This also seems to occur when I go to the gym and I'm wondering if the cause is because I'm being exposed to other people's skin bacteria? However exercising at home then jumping straight into the shower seems to be mostly fine for me. I'm hoping to improve on my skin tolerance the more I do it.
At the beginning of this whole saga, you may or may not remember that I became extremely allergic to cats, despite having grown up with them. This allergy has now diminished drastically and I don't think it's a coincidence that the lack of steroids has helped to rebuild and repair my broken skin barrier that was making me more susceptible to allergic reactions. I'm hoping in the not so distant future that I'll be able to get a cat. More time and exposure is required though me thinks.
Another thing that has happened, that I've talked about before - 3 years ago I had reached a point where I struggled to work my part time job. I struggled to put clothing on, let alone the ability to actually leave the house! I was a complete and utter mess. In July last year I built up my hours to 30 per week. In September I had upped them to 36 and I have managed to work a full time job without a skin sick day for well over a year now. It's staggering to see just how far I have managed to come. I no longer ooze. I believe the last time I had ooze was over a year ago too and that was actually because I had an infection.
This time in 2 weeks I will be at a festival in another country that is significantly hotter in temperature. I could only have dreamed of doing that this time 3 years ago, and finally it can be a reality. I am scared that my skin will relapse but I'll arm myself with antihistamines and the like, wear cooling clothing etc. and just have a bloody good time. I do deserve it after all. I'm not camping though. I think those days of being a smelly mess out of choice are well and truly over. No, we will be living it up in a 4* hotel, so if I do relapse then I'll have comfort. It is truly wondrous though to see how far my skin has come. When the weather became hotter here in the summer I struggled so much with my urticaria but thankfully now it seems to be something of the past. I can also eat spicy food now, stand in front of the cooker with the hobs blaring, and even wear layers of clothing! Miraculous!
I also generally have more energy - whether this is due to my vegan diet, my uptake of exercise or my body finally having a break from healing my skin, I can't say. But it's bloody good stuff. My hair has also gotten thicker. Back in January 2012 I took Methotrexate which resulted in the loss of my already fine hair which I put down to having scalp eczema. Right now it is the thickest it has been for a long time, though of course my hair has never been massively thick, but I'm no longer embarrassed for having the skinniest pony tail in the world.
I can't remember when I last had to hoover my bed. I used to have to hoover it every single day, multiple times a day, as well as lay on towels to stop the ooze from staining my bed sheets; soak off dried oozy tissues that had hardened onto my face; constantly endure the metallic and pungent rotting aroma of the ooze; the sleepless nights; running a bath at 3am and spending the next 6hrs topping up the water and falling asleep in it just to get some respite... I'm so glad those days are behind me.
Some photographs from my skin hell journey over these past years:
Today marks my 3 year milestone of ceasing the use of topical steroids and other steroidal treatments. I won't say I'm healed... not by any means. But I am able to live life comfortably again and without much disruption.
My face and neck area are still my most problematic areas but they have been since the age of about 16. They were also the areas where I used the most creams and ointments so it makes sense really for it still to be over-sensitive and quick to react to potential triggers and allergens.
I'm still on Ciclosporin but I've dropped my dosage to 250mg, down from 350mg, and though my skin hasn't completely cleared up, as it did the very first time I used it, it's still helping me on the days where I do struggle.
I also had a cold sore this past week and decided not to take as much Aciclovir as I usually do, just to test the waters and see if it would spread and turn into eczema herpeticum. Luckily my prayers were answered and it didn't spread at all from my lip. It did however take longer to heal and I kept managing to knock off the scab, but my body finally seems to be helping itself out. My vegan diet still isn't perfect and there are still refined foods in there but I am choosing more whole food options where I can.
I've also started to exercise! This was a huge problem for me for years before I even discovered TSW. I mean I've never been into exercise as I was the fat, unfit kid at school who was self conscious and didn't care for getting hot and sweaty and then having to traipse around for the rest of the day feeling disgusting... but it got to a point where my skin just couldn't handle sweat. I had heat urticaria and it would sting, burn and itch like hell if I so much as became slightly too warm. So I'm pleased to say I can now sweat and do exercise. My skin does suffer sometimes, for example when I go out for a run, the elements are not usually in my favour and I find that the wind can cause my skin to flare and I then spend the next few days with a red blotchy face. This also seems to occur when I go to the gym and I'm wondering if the cause is because I'm being exposed to other people's skin bacteria? However exercising at home then jumping straight into the shower seems to be mostly fine for me. I'm hoping to improve on my skin tolerance the more I do it.
At the beginning of this whole saga, you may or may not remember that I became extremely allergic to cats, despite having grown up with them. This allergy has now diminished drastically and I don't think it's a coincidence that the lack of steroids has helped to rebuild and repair my broken skin barrier that was making me more susceptible to allergic reactions. I'm hoping in the not so distant future that I'll be able to get a cat. More time and exposure is required though me thinks.
Another thing that has happened, that I've talked about before - 3 years ago I had reached a point where I struggled to work my part time job. I struggled to put clothing on, let alone the ability to actually leave the house! I was a complete and utter mess. In July last year I built up my hours to 30 per week. In September I had upped them to 36 and I have managed to work a full time job without a skin sick day for well over a year now. It's staggering to see just how far I have managed to come. I no longer ooze. I believe the last time I had ooze was over a year ago too and that was actually because I had an infection.
This time in 2 weeks I will be at a festival in another country that is significantly hotter in temperature. I could only have dreamed of doing that this time 3 years ago, and finally it can be a reality. I am scared that my skin will relapse but I'll arm myself with antihistamines and the like, wear cooling clothing etc. and just have a bloody good time. I do deserve it after all. I'm not camping though. I think those days of being a smelly mess out of choice are well and truly over. No, we will be living it up in a 4* hotel, so if I do relapse then I'll have comfort. It is truly wondrous though to see how far my skin has come. When the weather became hotter here in the summer I struggled so much with my urticaria but thankfully now it seems to be something of the past. I can also eat spicy food now, stand in front of the cooker with the hobs blaring, and even wear layers of clothing! Miraculous!
I also generally have more energy - whether this is due to my vegan diet, my uptake of exercise or my body finally having a break from healing my skin, I can't say. But it's bloody good stuff. My hair has also gotten thicker. Back in January 2012 I took Methotrexate which resulted in the loss of my already fine hair which I put down to having scalp eczema. Right now it is the thickest it has been for a long time, though of course my hair has never been massively thick, but I'm no longer embarrassed for having the skinniest pony tail in the world.
I can't remember when I last had to hoover my bed. I used to have to hoover it every single day, multiple times a day, as well as lay on towels to stop the ooze from staining my bed sheets; soak off dried oozy tissues that had hardened onto my face; constantly endure the metallic and pungent rotting aroma of the ooze; the sleepless nights; running a bath at 3am and spending the next 6hrs topping up the water and falling asleep in it just to get some respite... I'm so glad those days are behind me.
Some photographs from my skin hell journey over these past years:
PRE-TSW
Weird triangle-nose face rash
Weird rash on thigh
Bruising on thigh from over-scratching
Same as 1st image but a different day
DURING TSW
Allergic reaction to staying round mum's with the cats
All greased up with my arms covered to stop scratching and ooze, and red rashes on thighs
A mixture of TSW/ MRSA/ Elephant skin
Swollen eye
During MRSA/ TSW period
The result of bad skin and skin picking compulsion (dermatillomania)
Rash
Eczema herpeticum and Cellulitis of the eye
Red sleeve
MRSA/ TSW
Ooze
Leg sleeve
Development of Pompholyx
Tummy rash
Skin flakes
More flakes
Tight, hardened ooze and raw open wounds
Thigh rash
The tissue nightmare of constant ooze
Elephant skin
2014 - Thin hair
I have faith that my skin will get ever stronger. I fully accept that it will take years and that I may never truly heal because of the extensive damage that I have bestowed upon my skin, thanks to doctors and dermatologists who have misdirected me in terms of usage safety, but I will get there.
Hope everyone else isn't suffering too much. Happy healing!
Friday, 18 March 2016
Eczema / TSW Loneliness
OK. So I've touched on this subject loads in the past but a series of events have occurred recently that made me feel the need to write another post.
I feel so incredibly lonely. Going through steroid withdrawal, and even before that when I had 'severe eczema', I just lost my social life. I've slipped further and further inside of a shell and I'm struggling to come out of it. When I do go to events I feel as though I'm letting my friends down because I'm just not having as much fun as I should be. I'm just not living and feel constantly worried about how things will effect me.
Drinking. My friends love to go out for a drink. Which is all fair and well but I have to think about how it would most likely cause my herpeticum to flare as it has in the past, not to mention the dehydration aspect of it makes my skin dry out. I just feel as though I'm boring and it's not because I can't drink I don't particularly want to drink. It's the socialising bit that surrounds it. I just struggle to be myself.
It's reached the point where I even struggle to talk to people online. Online. For Gods' sake. All it requires is typing. But I just feel scared and weird.
It doesn't help that because I'm not talking, no one else is talking to me either. I guess they must think I'm ignoring them or I'm doing fine but I'm not. I'm really, truly not.
I have a feeling this post will just consist of word vomit and I will type as my brain processes these thoughts but I need to get it out.
I just don't know what to do to help myself. I was always incredibly shy as a child, but when I became a teenager I started opening up a bit more, and in my college years I feel as though I was finally getting somewhere. I was so much more outgoing and up for a laugh. I think it's these times that I really miss. Just feeling carefree and happy. I seem to cling onto my past with so much love and nostalgia. But in the present all I feel is regret and loss of the life I once had. It's such a sad state of affairs. I was so independent but since being ill that part of me has disappeared and I lack so much confidence in myself as a person.
I desperately want to change but I feel stuck.
I'll probably end up deleting this post as it's so poorly constructed but I just needed to get it out there. I'm not OK.
Edit:
I think this is going to be something I keep adding to as I just went away and had more thoughts that I wanted to get down.
I feel like everyone is finally getting their lives together. Everyone is growing up and doing fun and exciting things... but me... I'm just left somewhere in the past hoping life can resume when I'm better. But will I ever be better? I used to have such a zest for living life. I still have so many goals and ambitions but I have no idea where to go from here. Everything revolves around my illness which is something I never wanted to admit but I'm a sensible person, and so of course it does. I feel trapped and as though I have regressed in life. I'm 26 and feel as though I've wasted so much time doing nothing.
I also feel as though no one cares any more. Oh it's just Jenny. She can never do anything so we'll just stop asking her. She's boring now so can't really be arsed. OK now I'm sounding butt hurt. But I did warn you this would be word vomit. I don't even know if that is even true but I can't help but overthink things.
I just don't know.
I've just become incredibly anxious and awkward.
I feel so incredibly lonely. Going through steroid withdrawal, and even before that when I had 'severe eczema', I just lost my social life. I've slipped further and further inside of a shell and I'm struggling to come out of it. When I do go to events I feel as though I'm letting my friends down because I'm just not having as much fun as I should be. I'm just not living and feel constantly worried about how things will effect me.
Drinking. My friends love to go out for a drink. Which is all fair and well but I have to think about how it would most likely cause my herpeticum to flare as it has in the past, not to mention the dehydration aspect of it makes my skin dry out. I just feel as though I'm boring and it's not because I can't drink I don't particularly want to drink. It's the socialising bit that surrounds it. I just struggle to be myself.
It's reached the point where I even struggle to talk to people online. Online. For Gods' sake. All it requires is typing. But I just feel scared and weird.
It doesn't help that because I'm not talking, no one else is talking to me either. I guess they must think I'm ignoring them or I'm doing fine but I'm not. I'm really, truly not.
I have a feeling this post will just consist of word vomit and I will type as my brain processes these thoughts but I need to get it out.
I just don't know what to do to help myself. I was always incredibly shy as a child, but when I became a teenager I started opening up a bit more, and in my college years I feel as though I was finally getting somewhere. I was so much more outgoing and up for a laugh. I think it's these times that I really miss. Just feeling carefree and happy. I seem to cling onto my past with so much love and nostalgia. But in the present all I feel is regret and loss of the life I once had. It's such a sad state of affairs. I was so independent but since being ill that part of me has disappeared and I lack so much confidence in myself as a person.
I desperately want to change but I feel stuck.
I'll probably end up deleting this post as it's so poorly constructed but I just needed to get it out there. I'm not OK.
Edit:
I think this is going to be something I keep adding to as I just went away and had more thoughts that I wanted to get down.
I feel like everyone is finally getting their lives together. Everyone is growing up and doing fun and exciting things... but me... I'm just left somewhere in the past hoping life can resume when I'm better. But will I ever be better? I used to have such a zest for living life. I still have so many goals and ambitions but I have no idea where to go from here. Everything revolves around my illness which is something I never wanted to admit but I'm a sensible person, and so of course it does. I feel trapped and as though I have regressed in life. I'm 26 and feel as though I've wasted so much time doing nothing.
I also feel as though no one cares any more. Oh it's just Jenny. She can never do anything so we'll just stop asking her. She's boring now so can't really be arsed. OK now I'm sounding butt hurt. But I did warn you this would be word vomit. I don't even know if that is even true but I can't help but overthink things.
I just don't know.
I've just become incredibly anxious and awkward.
Saturday, 23 January 2016
32 Months TSW
Hi everyone,
How the time flies! It has been roughly 3 years since I set up this blog in order to spread awareness of severe eczema, then learning of steroid induced eczema or 'Red Skin Syndrome' and in this time I have had a staggering 330,000 blog views. Your kind emails and comments also mean the world to me as I am humbled to learn that my blog has achieved it's aim of spreading awareness and showing people that they are not alone in this. I am truly grateful for the opportunities that have been opened up to me and for those of you who share your own experiences with me to show that I am not alone.
Thank you.
In other news sorry I have been AWOL recently. I work full time now and find it hard to find the time and energy to write on here. But I am still here! Although something scary happened on Christmas day morning. My Google account was 'hacked'. 2 weeks of trying to get hold of Google later, to discover that Google had just decided to change my email address, thus locking me out of my whole account. Cheers Google! Never mind... It's all resolved now!
I bet you're all dying to know how my skin is? Well it still isn't exactly great. My face, neck and arms have recently flared and I think the trigger is stress related. I mentioned that I'm now working full time - it's still within the same company but it's in a different department and I'm learning a hell of a lot. There's only 2 of us in the department and my colleague had a week off after Christmas which was probably the worst time for her to disappear. Needless to say I struggled immensely, and hence the result is that my skin is a bit of a mess. But that was weeks ago now, I hear you cry. Yes it was weeks ago but now that I no longer have the adequate time to heal (read; laze around and do nothing), it's going to take a little bit of time. It is however slightly better today than it was though.
I am now officially vegan. Shane and I have seen the light and don't want to consume any more dairy - I stopped eating meat months ago. We even enjoyed a vegan Christmas, at both of our parent's houses and it was glorious.
My next step is to try to incorporate more raw fruits and vegetables into my diet, but it is hard to think meal-wise what I can eat for lunch at work. I work from 7am so am hardly in the mood to make meals for work. I've been enjoying the night before's left overs or pitta breads and hummus with tomatoes and spinach but I want to try to get away from bread and consume more vegetables instead.
I've been snacking on fruits - kiwis, blueberries, bananas, oranges and apples but find they don't sustain me for long. I can't take huge portions of these things either because I don't have much time to eat them and we're forbidden to eat at our desks so that's a bummer. I would take salads but the prep thing is the only thing holding me back - I haven't actually tried it but I imagine it wouldn't taste so fresh making it the night before? I don't know.
Breakfast is usually a variation of overnight oats or smoothies so I'm definitely getting my quota of fruits in there. I just need more during the day. Also considering probiotics now. Something I've been thinking I'd try for ages but I don't want to pay an arm and a leg for them. Does anyone have suggestions of good but cheap ones?
How the time flies! It has been roughly 3 years since I set up this blog in order to spread awareness of severe eczema, then learning of steroid induced eczema or 'Red Skin Syndrome' and in this time I have had a staggering 330,000 blog views. Your kind emails and comments also mean the world to me as I am humbled to learn that my blog has achieved it's aim of spreading awareness and showing people that they are not alone in this. I am truly grateful for the opportunities that have been opened up to me and for those of you who share your own experiences with me to show that I am not alone.
Thank you.
In other news sorry I have been AWOL recently. I work full time now and find it hard to find the time and energy to write on here. But I am still here! Although something scary happened on Christmas day morning. My Google account was 'hacked'. 2 weeks of trying to get hold of Google later, to discover that Google had just decided to change my email address, thus locking me out of my whole account. Cheers Google! Never mind... It's all resolved now!
I bet you're all dying to know how my skin is? Well it still isn't exactly great. My face, neck and arms have recently flared and I think the trigger is stress related. I mentioned that I'm now working full time - it's still within the same company but it's in a different department and I'm learning a hell of a lot. There's only 2 of us in the department and my colleague had a week off after Christmas which was probably the worst time for her to disappear. Needless to say I struggled immensely, and hence the result is that my skin is a bit of a mess. But that was weeks ago now, I hear you cry. Yes it was weeks ago but now that I no longer have the adequate time to heal (read; laze around and do nothing), it's going to take a little bit of time. It is however slightly better today than it was though.
Rashy, dry and wrinkly!
Yes my brows need sorting. But I have some!! & I'm also noticing more baby hairs on my head :)
Splits on my eye lid creases
I am now officially vegan. Shane and I have seen the light and don't want to consume any more dairy - I stopped eating meat months ago. We even enjoyed a vegan Christmas, at both of our parent's houses and it was glorious.
My next step is to try to incorporate more raw fruits and vegetables into my diet, but it is hard to think meal-wise what I can eat for lunch at work. I work from 7am so am hardly in the mood to make meals for work. I've been enjoying the night before's left overs or pitta breads and hummus with tomatoes and spinach but I want to try to get away from bread and consume more vegetables instead.
I've been snacking on fruits - kiwis, blueberries, bananas, oranges and apples but find they don't sustain me for long. I can't take huge portions of these things either because I don't have much time to eat them and we're forbidden to eat at our desks so that's a bummer. I would take salads but the prep thing is the only thing holding me back - I haven't actually tried it but I imagine it wouldn't taste so fresh making it the night before? I don't know.
Breakfast is usually a variation of overnight oats or smoothies so I'm definitely getting my quota of fruits in there. I just need more during the day. Also considering probiotics now. Something I've been thinking I'd try for ages but I don't want to pay an arm and a leg for them. Does anyone have suggestions of good but cheap ones?
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