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Friday, 29 November 2013

Day 192 : Topical Steroid Withdrawal

Thought I should give you all an update as to how I'm doing seeing as my last entry was about my 8th bout of eczema herpeticum.

Well I went to see my GP as I stated I would on the Tuesday morning and was given 800mg tablets of Aciclovir, the usual treatment to rid the skin of the herpetic viral infection. Needless to say it worked and I was pretty much all cleared up by Wednesday evening. I'm glad it was short lived this time.

Last weekend we stayed at Shane's parent's house for a little break away as Shane had finally taken a week away from work. Believe me when I say he's needed it! He hasn't had a full week off work since he started the job 2 years ago and all the stress of this year with my health and his 1000km Challenge has pretty much taken its toll so this week was hugely needed for him.

It wasn't much of a break though as it was this past weekend that he hit his 1000km target at a half marathon in Norwich! But he isn't stopping there of course... oh no. Being a stubborn sod he's going to run another 5 races this year, including the marathon in Liverpool on New Year's Eve just so that he can reach his target of 52 races. Crazy! I will finally get to spend my weekends with him next year. I hope. If you'd like to sponsor him for his hard efforts and because he has gone above and beyond all expectations feel free to sponsor him http://justgiving.com/shanes1000km or check out his links in the tab at the top of my blog entitled "1000km Challenge". Thanks guys!

The first night of staying at his parent's house I woke up with a red, blotchy face. Eep! I honestly haven't suffered from that since around August time before I stopped the immunosuppressants and was diagnosed with MRSA so to suddenly wake up with it last weekend was pretty shocking. It got worse each morning and I think I can only attribute it to a washing powder allergy? It was only confined to my face, the rest of my body was fine, but given I wear full PJ bottoms, socks and a baggy t-shirt makes me think that is must be a contact allergen.

Frustratingly the red face hasn't disappeared just yet. I'm not waking up with it any more now that I'm back in my own house but by the evening it will be back again, due to being itchy and rubbing it, so I don't know if I may have awakened something in some way. Brilliant.

Anyway as always I hope everyone is well!

Tuesday, 19 November 2013

Eczema Herpeticum (Round 8 for Reals)

So as mentioned yesterday after I was having such a good time, my skin had to perk up and remind me that I'm not out of the woods just yet. Eczema Herpeticum round number 8 (this time it is number 8 because August's bout turned out to be MRSA) has decided to renounce itself.

It started on Sunday evening when I got in from work, just in the outer corner of my eye. By yesterday morning my eye had gunked itself shut (mmm!) and I was left with an unsightly pink and bloodshot eye. The fact it had done that filled me with dread as I knew instinctively that it was definitely herpeticum that I was dealing with. I had my usual shower around lunch time and as the skin on my face was particularly uncomfortable and dry I decided to moisturise the rest of my face, completely avoiding my eye area. Of course that didn't seem to matter in the slightest as the moisturiser then acted as a catalyst of which to spread the bloody disease across all regions of my face. I'm my own worst enemy.

Poor gammy eye


I decided to go in to work anyway as it would take my mind off the widespread tingling sensations and volts of pain that come with its territory, regardless of the fact I knew I looked disgusting and children would cry and mother's would scream in sheer horror. Obviously that didn't happen and no one said anything or flinched away from me so that boosted my morale somewhat. As it was nearing the end of my shift I looked at myself in a mirror (oh vanity!) and saw that the pustules were more widespread and oozing fluid so that it looked as though I was sweating heavily. Simply delicious!

Oh, I'm so attractive with my gammy eye!


When I got home I immediately went into the bathroom and began to dab at the oozing pustules with tissue, making sure to use a new section of tissue every time to avoid the spread. This seemed to work a treat as today although my eye was still gunked shut and my face is drier than dry the pustules are dessicated so are unable to spread further hurrah!

Luckily on Sunday night when I had an inkling that it could be herpeticum I sought out some left over 800mg Aciclovir tablets from my last bout and was able to take those. I have since been to visit my GP this morning to get a proper lot in which I can finish the course.

Go away herpeticum you're not welcome!

Monday, 18 November 2013

Topical Steroid Withdrawal 6 Month Anniversary

I drafted the following post last week however I've woken up today with my eye closed shut with pus and the telltale signs of eczema herpeticum. I'm long over due I guess...


So next Friday will mark my 6 month anniversary of being free from using topical steroids. It will also be around 3 months of quitting immunosuppressants too.

A lot of changes have been happening over this past week. Changes I am so happy about and feel incredibly grateful and optimistic that next year won't be so tough. Next year surely has to be a good year!

I've been taking small steps to be more social, whether this be grabbing a hot drink with fellow colleagues after work, or getting out of the house that little bit more for a browse in the shops, or even picking Shane up from work, I'm doing it and it feels great! I've been making more solid plans such as arranging to attend my work's Christmas party and even paying in advance. For how I've been over the course of this year, I wouldn't have even dreamed of paying cash up front for an event just in case I needed to bail out but I do feel very optimistic that I'll be able to go regardless.

I've now been attending my shifts at work 4 times a week since my last bout of illness in the first week of September. I think this is an amazing achievement as I was off so often that my attendance percentage was sky high and I'd come to the red sheet of warnings far too often than I care to. Obviously my managers understand my condition so knew it was not my fault for needing to take so many sick days but it still stings to sign that final warning sheet, where normally 3 strikes and you're out is the usual procedure. My hours have been creeping up and I even asked if I could take on another day whilst it's the Christmas period. Luckily because it is only a part time job my longest shift only requires me to be there for 6.5hrs. The rest of my days are usually only 4-5hrs, if that but it's still amazing progress!

On Wednesday I probably reached my biggest achievement of all. I was sitting in my craft room actually crafting! When we moved to this house one of the requirements was for me to have a room dedicated to all of my craft things (saying I have a LOT is an understatement!) and it's only taken me a year to be able to use it for its designated purpose. To also further this, the fabric I was using was shedding an awful lot of fibre dust and did I react? No! I'm literally over the moon <3

Also I've been able to start doing a bit of exercise. I am so unfit it is ridiculous! For years now I have been prisoner to the awful heat induced urticaria which is brought on by exertion, meaning exercise was nigh on impossible. Some how I've been able to do cardio, albeit not for long because I get so out of breath(!), but my hives appear to have been kept at bay. Sweating is still a little bit of an issue but I'm not scratching myself frantically as I would have been previously. It definitely feels a lot more tolerable.

I'm so, so happy that my life is slowly but surely getting back on track. Next year I'd like to achieve quite a lot before I hit the big 25; such as going abroad to maybe Norway or somewhere lovely I've never been, finally obtaining a full time job, moving away from this city, starting up a craft based business and finally being able to properly say thank you to Shane for supporting me and being there in my toughest times. Without him I really don't know how I'd of survived.

Life is getting easier.

Tuesday, 12 November 2013

False Advertisement Using My Photographs: Eczema Cures

So some of you may be aware if you are a friend on Facebook or a member of the ITSAN page that one of my photographs had been used to falsely advertise an eczema cure. I was alerted to this fact by someone who had come across the image and noticed it was being used to sell a product.

The website in question that used my photograph was attempting to sell a book relating to eczema cures without the use of steroids. However they took one of my images without my prior permission as a "before" picture and included an image of a different woman, who just so happened to be a brunette with blue eyes as the "after". When showing some of my friends the site they were able to deconstruct it and found that virtually none of the information was in any way truth. The image of the man supposedly writing the content for the site was in actual fact a stock image of a male model. A clause was also spotted that stated that the information on the site should be taken with diligence and "are unverified results that have been forwarded to us... and may not reflect the typical purchaser's experience, may not apply to the average person and are not intended to represent or guarantee that anyone will achieve the same or similar results."



This website is also full of viruses and other nasties so I don't recommend you click on any links provided to their site. After a choice worded email from myself my image has since been removed however the website is still up promoting lies and leading poor desperate people to buy from it.

Basically I would say stay away from VanishEczema.com and it's affiliated sites (Health Online Group) as they appear to only be working to create some serious capital and not in keeping your best interests at heart.

In the mean time you will be seeing some changes to this blog, including proper disclaimers and such. I have included one in the "About Me" section and it is actually law that any images taken by the photographer has full ownership of those photos, so that is something to bare in mind. Do not just take photographs without prior permission.

I hope everyone is well :)

Friday, 8 November 2013

Eczema vs. Weather

I just can't seem to win when it comes to what my skin can tolerate. With the weather patterns the UK gets, be it the cold, wind and rain or the hot, dry heat my body cannot cope! I just cannot handle the extremities of the two.

The majority of eczema sufferers I speak to say that their condition worsens in the colder months and becomes manageable or even restored back to its former glory in sunnier climates. This has never been so for me. I have battled with both the hot and cold - my skin gets no real respite all year round.

Winter vs. Summer


In the summer I am faced with prickly heat type rashes that are eczematous in formation and find myself suffering profusely because I just cannot get cool. These rashes can also follow on into colder months when wrapping up warm to go outside and  to protect the skin from the cold climate is refuted by the extreme heat of exertion or stepping inside a warm building such as a shop. The inability to dress appropriately for every possible temperature regulated scenario proves for a very hectic skin regime indeed.

I find that not only do I suffer from these rashes in the milder months but my skin will also crack and bleed due to the lack of moisture.

Going through Topical Steroid Withdrawal has certainly changed the way my skin acts for the better, but in some ways it is worse because of the unknown ways that the skin reacts to adjustments in temperature and humidity.

As the winter weather begins to settle itself I see a definite change in the way my skin is reacting. I have been attempting to go moisturiser-free as I found this to achieve better effects overall, yet now that the country is faced with harsh winds and bitter cold days I am finding that I can no longer cope with being so dry! However as I mentioned in a previous post, applying moisturiser to my face is causing me to breakout in small, itchy pustules- Argh!


How does your skin react to the extreme climate changes?