17 - 19 Feb
Week 1 on Imuran
"Face has gotten so blotchy again. Although, I'm happy because I am expecting a change in my skin in the coming weeks. The blotches of red on my neck are growing and spreading their kingdom onto the top of my shoulders. I am expected back in the clinic on Tuesday, to take more bloods and see if my results from England are back yet. If they are, praise to be because then my daily dose can be increased to something a bit more substantial. I've noticed the texture on my cheeks are going scaly again, and on my hands I can actually make out the shape of flakes of skin - like a lizards or snakes, the shape is that obvious. Of course I am happy there are no signs of infection any more, but the dryness of my whole body is something else. Even my legs at the minute are mad itchy, almost like a bit of folliculitis.
What is odder again about my legs is that, the minute I take trousers off and go to bed, lying down seems to ignite the fire and it feels like my legs are crawling. The sensation is so bloody weird because it only happens when I release my legs from clothing, so the last two nights I've been wearing leggings to bed to keep some form of 'pressure' on my thighs and calves, it seems to be working because I have actually slept through the night without itching and little red bumps appearing. I honestly think at times I'm allergic to myself. I'll just have to mention it to the ladies on Tuesday.
Oh. Remember that smell I mentioned? The smell of rotten putrid something or another that seemed to be trapped in my nose? Well, it is still there, still making me feel slightly insane, that such a smell could be trapped inside my nasal cavity. What is actually happening to my body, because it is as if each week something new is coming to the surface to test my patience.
Getting to the gym definitely raised my spirits though. Although the sweat really stung my eyes, the same way crying does. I feel lucky to be a member of a gym where no-one throws concerned or unsure looks my way when I walk out with my neck and arms on show. Plus I felt I needed to go the last three days, during the week in work I kept having what can only be described as heat attacks. My hands and wrists would go on fire and I could spend up to 30 minutes trying to regulate my body temperature to cool them down. My whole body just seems extra sensitive this week to food, the temperature changes, and my hormones too are probably coming into play as the Painters are due in town in the coming days. Ugh, just thank god for the community on Instagram and my fam to pick me up when things are bad. I need a holiday so bad."
extract from notes app taken over the course of the first week on Imuran.
20 Feb
Still no sign of my results from England. Bloody hell how long are these going to take? Woke up this morning to small crack down the middle of my bottom lip, lashed on Epaderm to make sure it wouldn't split further as it was actually quite sore, and each time I spoke I could feel the skin splitting further.
8.05am I sat down in the clinic and checked on my lip to see it getting drier, no matter what I did it refused to retain any moisture.
8.45am I check on it again, there was one more person ahead of me in the queue so had a mother few minutes before I was called in. The split, has turned a yellowish green. Are. You.For.Real. This colour only means one thing : infection. In the space of an hour my body manifested yet another infection. Well at least I'm in the right place for them to look at it and figure if its impetigo again.
9.25am. The reg has said everything looks good, asked her about my lip and the colour being so indicative of something being askew. She didn't even bat an eyelid when I pointed it out to her, and again when she told me it was fine and just to used Hydrocortisone and Fuicidin H on it till it eased up. She did a full body inspection this time, and decided to raise the fact that I have no cuticles. Okay, yes of course I have cuticles, everyone does, but I have no visible cuticles. I had never even noticed if I'm honest, and I don't get my nails done for a technician to ever comment on it. Seemed to confuse her a bit, and she took note of it, she never followed up on what it could mean if anything at all. Just another mystery into the giant mystery of my skin. Regards my legs, had no clue and didn't actually bother to appease me to give me even a reply to why my legs could be acting so weird. Another hi tech prescription for the suppressants was written and I was sent on my way for another 2 weeks, at that point we hoped the results from England would be back.
Oh the joys when your doctors don't even know whats happening and you're left with more questions than answers, this was becoming a regular occurrence too. I wasn't loosing hope, just disappointed that not even my doctors had an answer for me.
21 Feb
I got such a fright this morning. I was just doing my usual morning time stretches in bed and rubbed my neck when I felt it. What felt like at the time like the largest freaking lump to ever exist in mankind was in reality about the size of two baked beans smushed together to form a lump directly under my chin. I got such a fright and roared down to Mam. My mind went directly to the worst case scenario of my thyroid and the c word, or maybe just a benign tumour. But that was the first place my mind went, I had no clue what it was, and to find a significant lump that appeared overnight is mind boggling. I can actually still remember the sensation of sheer panic run through my body as I looked at it in the mirror.
And oh yea, the split in my lip? That was now a nice shade of green. Wonderful. What an excellent way to start Hump Day.
The whole day in work myself and my mum spent googling the mysterious lump on my neck. What eventually came to light was that it was my lymph nodes. I had the slightest idea lump nodes even existed in that area of your body, but then a few weeks earlier I had no idea they existed in my arms. So, there you go every day truly is a school day. As they day progressed I my chin area felt heavier, and an ache began to spread around my jaw and into my ears. From what I could find online, even just basic information about lymph nodes, I had an infection of some sort....and a serious enough one if the size of my nodes where anything to go by.
Hate to be the one to tell my reg I told you so the following week. But well I told you so and you didn't listen. ( I actually relished telling my reg this )
22 Feb -
You'll recognize this photo from when I posted it on Instagram stories. I looked and felt so bad even at this early stage. Already my head throbbing with the pressure of the lymph nodes swelling, doing their utmost to beat the unknown infection my body was harbouring.
23 Feb - 24 Feb -
The next morning I woke up like this. From this point on it just got worse and worse. I messaged my dad as I was meant to work that evening and the following day. He went straight to the Occupational Health in the hospital to show them the photo and then onto the clinic with the news that I was considered 'highly infectious' and 'unfit to work for her own safety and those of patients'. What we thought at the time was impetigo was taking over my chin as it's kingdom, and what made it worse for me was I actually felt sick. I felt tired, swollen, and my whole chin and jaw was just aching from the discomfort of the swollen glands - which were bigger again - and the sores which were pulling at my skin. The clinic when presented with these photos quickly handed over the prescription for a round of antibiotics to be taken if 'needed'. Damn it Elizabeth I clearly need the antibiotics!
There's not much more to say about this as I was in so much discomfort, I did not have the emotional energy to share this infection online at the time it was happening because it was just too much for me. I didn't even write anything down at the time because all I could muster the energy to do was move from bed to couch and binge watch Netflix, while sporadically eat throughout the day - mainly soup because eating was a complete bitch. The crust, scabbing, was... disgusting.
I felt disgusting. I was disgusted with myself.
24 Feb
No-one knows what type of infection I have. How can three qualified dermatologist not know what is causing this? I swear the antibiotics aren't doing anything, as it's clearly getting worse.
"It could be viral, bacterial, it could even be airborne, we just don't know right now.
25 Feb
I've been put on Zovirax anti-viral tablets to take on top of my antibiotics. They still don't know what type of infection I have, but the fear is that I have both a viral and a bacterial infection now.
26 Feb - 27 Feb -
I felt horrible. I had to clean my face three times a day, and although it caused utter pain that tingled down my spine, I had to knock the crust off so I could apply the cream I was given, directly to the wound in a bid to make it heal quicker. I had been sent for more blood tests, and we were already waiting on MRSA results to come back. You know the saying of the millenniums? "I just can't" and "Cant even". Well, those phrases were the only way to describe my state of mind during this infection. I felt like I was never going to heal, and with none of my doctors knowing what I actually had, just made it feel so much more worse. When it began to travel to my eye I lost it one morning when no-one was in the house. I just let a roar out at the mirror, and cried, brushed my teeth, piddled and went back to bed. It was all I could manage.
I had to change my bedsheets everyday, I couldn't use a facecloth or towel more than once. I went through two 200 pieces pack of cotton buds.The double ended type too. All so I wouldn't touch the infection directly in the fear of spreading it. I was wearing gloves at night too, and trying to sleep with my hands tucked away so I wouldn't be at my face.
On the
27th it looked so much worse, the crust was very prominent and what can be described as little punch hole marks, were spreading around my chin. I could not wait for the clinic the next day to get some clarity on what was going on with my body, at this point I had been out of work for more than a week, it felt like a lifetime since I hadn't been outside my house either. I felt like my life was out of my control and some, all mightier divine being was taking the piss watching me struggle with my skin, enjoying their latest reality TV show.
28 Feb -
I feel like its drying out. Which, I can't decide if this sensation is worse than when it was oozing and tight. This, this feels.. I don't know how to put it into words. All I know, because I can see my reflection staring back at me, is that it looks worse. The colour has even changed. And I'm terrified of the bacterial infection traveling to my hands since I've open wounds.
I stayed in bed for most of the next two days. Not really feeling at all like myself, or even bothered to do anything that meant leaving the house. At one point my dad asked me to go do the lottery at our local just down the road - where most the shop assistants have seen me on my worst skin days - but I refused to go. I was
managing my routine of getting up washing my face, cleaning my bed, hoovering my room of any dust etc, washing my face again and again, applying creams, taking medications, and binge watching Once Upon A Time on Netflix, but the thought of someone seeing me like was too much for me to handle.
Indeed I was starting to feel better and wasn't sleeping till midday anymore, but physically it was still to put it bluntly, and one of the rare times I'll swear on the blog, fucking awful to look at. I did see my consultant again today, with actual blood test results. And what came about was that while I am MRSA free, I had two infections. My primary one was the HSV1 simplex, and underneath that I had a secondary bacterial infection.
29 Feb -
This infection was nothing like I had ever experienced before. I could actually
feel the
infection under my skin. The tingling, and intense and acute bursts of itchy heat that would pop up around the marks would be enough to drive you insane. By the end of February the overall rooftop crust as I'm going to call it - the crust that primarily covered the punch hole marks, it was golden and covered the wounds kinda like a roof - was gradually disappearing. I was at long last starting to actually see the wounds of my infection.
3 March -
Day by day, more of my chin was becoming clearer. The first few wounds from the beginning of the infection were looking better, and were no longer forming a golden crust. No crust means no infection right? Hopefully that's what I wanted to hear when I went to the dermatologist again on the 7th. I was due to see friends for brunch this weekend, and while I was on the mend, and new by the Sunday my face would look better more so, I had an anxiety building inside me of how people would look at me on the train on the way into town, or how the waitress might perceive me as she took my order. Of course I came over, and marched myself into town, but that was after my mum telling me to suck it up basically and not let this get in the way of something I was looking forward to. To actually live my life. I still worried the whole train journey in that someone might actually be really rude and ask me about it, or someone might know by just looking at me it was herpes simplex virus that I had.
And I think it was the fact it was HSV 1 that caused this, made me feel so anxious. So many people still in today's more sexually diverse and understanding society ( supposedly ) still perceive this virus as a taboo, and think it something only certain type of people get. I got mine from an unwashed glass in a bar, a glass that I wasn't even drinking alcohol out of mind you. But still, in my head this virus was getting to me, niggling away at how people would perceive me in the future. And was I now to expect having cold sores all the time? Of course that would be just my luck alright.
4 March -
Very little crust, no new holes, and my top lip is reducing in size at last. Today was a good day. I have scabs rather than crusts, scabs which are lifting off themselves, because the one thing I can't do at this stage is pick them it's just going to cause scarring. Supposedly with viral infections you don't scar? But I'm unsure of how true that is. Time will tell I guess.
7 March -
I recorded this video straight after visiting my clinic, for what I thought would be a good visit that would lead me to my reintroduction into society. At this point I had missed college, both of my jobs - I work two - any of my gym classes, my pole fitness, I had even been asked out on a date during this time, which I declined because of how I looked.
I couldn't wear makeup, and when I explained that to the guy in question he understood and still insisted we even go to the cinema, that he didn't mind at all. But my mind was made up, and there was no budging me from my armchair in front of the PlayStation covered in antibiotic cream and my hair in a messy bun. There was no hope in hell, I was letting a guy, let alone a first date, see me in the state I was in. Which sounds quite contradictory of myself because I post photos of my face bearing all aspects of my dermatitis online for the world to see, so surely he had already seen photos of what I looked like on bad days? Regardless that date did not happen. But now I have the power of realization to see that this guy saying he didn't care and insisting on doing something to get me out of the house, just proves that there are men in the world who don't solely focus on your looks, but your intellectual worth and might actually enjoy your presence not just your ability to beat your face.
On the 7th I actually got the proper name for my primary infection: Herpeticum.
The name initially made me want to go bury my head in the sand, wait for the tide to come in and let it just drag me out to sea where the mermaids and other scaly creatures of the sea would accept me and make me one of them. After saying the word a few hundred times since getting the name of my infection I've become immune to the what the name entails, and I no longer want to be dragged out to sea.
The 7th of March kind of marks the last week of my infection being intense as my doctor realized that being on immune suppressants meant they should have doubled my medication dosage as it would take longer to take affect because of Imuran. I did run into trouble the following two weeks with cold sores, golden crusts still appearing, and it wasn't until the 17th of March that my face was actually clear of all signs of infection. But as I now have HSV1 in my system I have to be aware of the signs of Herpteicum and how to combat the virus when it raises it's nasty head.
Do you think I could have dealt with anything differently? Have you ever experienced Herpeticum? How do you feel about seeing photos like these? Let me know in the comments section or on my social media channels.
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