awareness · beauty · blog · disease · medical · Uncategorized

One smile can hide so much pain…

Ok, so I’d like to begin with I am so so sorry that I have been away for so long, I’ve been having trouble with this shitty illness. I have just found out I have thyroid disease so I am trying to get my head around a few things and haven’t had the time or the want to post ūüė¶ so massive apologies for that!

Moving on …

Where were we, Oh yeah, Marcus … he was a dream. After that night it was safe to say we couldn’t¬†leave each other’s side, we would play pool together, eat together, watch tv together, we just loved being in each others company, it seemed so natural. I remember just explaining briefly about my disease to him and he wasn’t fazed¬†at all, like not even a wince, I was amazed really because so many people used to look at my skin if it was on show and I could see them staring blatantly¬†whilst talking to me (SO FUCKING RUDE). I couldn’t believe my luck, I spent weeks just saying to myself this is too good to be true. Weeks went by and things were rosy as ever, I was truly happy for once, however, I always kept my guard slightly up in fear I would get hurt once again. We had been together for about 5-6 months when I found myself going nowhere in this hostel and if we were going to have a shot at making it as a couple something needed to happen, so I decided… I needed to get out of there and the only way that was going to happen was if I moved back in with my mum… an hour and a half drive away from him ūüė¶

I did it… I moved, I moved away to give us a shot, we both agreed that in the time until we knew what was happening we would just be seeing each other casually which in hindsight was a good decision as it took the pressure off of us as a couple while we worked our lives out. He visited most months or I would go back to see him, the move was a great move for me as a few weeks after I moved I had found a job, voluntary but it helped me get into college and get my NVQ which I did, shortly after I found a part-time job in a jewelers and I loved it, my boss was great, my colleagues were so lovely I felt on top of the world… although I had a big hole in my heart…HIM!

Until next time…

Liv-x

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awareness · beauty · blog · disease · health · medical

A Ray Of Sunshine?

So, I’m guessing you’re all wondering… ¬†what happens next with Marcus. I will warn you this part is going to be longer and a little more step by step you will understand later on why.

Well, after a few days of sitting in my room, in this shitty chicken coupe they called a hostel just sitting, wondering, overthinking EVERYTHING! I eventually dragged myself out of my room and due to the stress my skin went crazy, I was super sore, I took a walk around the corner to Tescos¬†with my last ¬£3.75 got myself some bread and grapes. Walking back on my own (still feeling rather sorry for myself) I walked upstairs dragging my feet and staring at the floor… I pushed open the door to the communal lounge and heard a soft voice ” Hey stranger, not seen you around for a few days..¬†up for a game?” I look up, BOLLOCKS! it’s him… in my head I am frantically saying to myself “Oh God Ohh Ohh God what in the hell do I tell him, what if he thinks im weird… or worse what if he thinks he upset me Ohh SHIT …. (please if there is a God send a black hole my way to swallow me up!).

I was not so lucky. Eventually I managed to squeak¬†“Oh no I’ve just not been feeling great, yeah sure, rack them up!” Phew! that was ok, right? he totally bought that… “Ok calm yourself you’re fine”. After pulling my ridiculous self together we play pool for a while then I get the grapes out Marcus darted his eyes to my grapes (haha ūüėČ ) and he said with confidence “bet I could catch one in my mouth across the room” I laughed..¬†“Ok you’re on” so for what felt like hours we were throwing and catching grapes and I found myself feeling comfortable,¬†like %100 comfortable and having fun! this was most definitely a sudden change of events, I looked at him and smiled with such Genuity and I saw it in his eyes he felt the same he gave me the exact same smile back.

5 pm came and it was dinner time, we had dinner together and just talked, so natural like we were already friends, I had never felt so comfortable with someone like this before, even¬†ex-boyfriends I was never this relaxed. After dinner, we exchanged numbers and went off to our separate rooms, I was in such a good mood I forgot about my skin, the pain and everything else along with it. I felt so uplifted I cleaned my room, had a shower and pampered myself a little by doing my hair and painting my nails… looking back I think I did all of that because for once I felt good about myself, I had never had this before and this is going to sound soo¬†corny but, was this love at first sight? is that how it feels?

I had so many questions. an hour or so later I got a knock at the door, it was him, immediately my stomach was flipping I was nervous but also relaxed (that’s a strange feeling) he asked: “have you got a cigarette¬†paper?” YES! I answered with what sounded like so much excitement (CALM DOWN Liv… he’s just a guy) I argued with myself in my head “not just a guy Liv… a kind, funny, sweet and totally smoking HOT guy!”. Anyway, I invited him in for a cigarette, we played cards and watched TV and just enjoyed each others company, I didn’t even realise for the whole time I hadn’t even thought about my skin which is strange because it’s always my number one worry when meeting anyone.

Flicking through the Freeview channels… I am pretty sure Gordon Ramsay came on and we both LOVE Ramsay… he laid back on my bed (it was a small room no sofa, no chairs just a small prison bed), I wasn’t sure what to do? he then said “don’t I get a cuddle? everyone loves a good cuddle” with the biggest smile on my face I said “sure!” MAN, he smelt good. As I lay there with the smell of his aftershave lingering in the air I was soo happy, so happy that someone seemed to just want to be around me… I was getting a little uncomfortable so I ¬†wriggled a little and… the dozy bitch (ie. me) smacked my head on the metal bar on my bed, he laughed so hard, I laughed harder and this time it wasn’t out of embarrassment. He held my head and asked through his laughter if I was ok, I giggled back yeah just a little dizzy, he put his arm underneath my head and laid me down (Still laughing at this point I might add) then that moment came, you know, the one where your lock eyes… yep he fucking kissed ME!, ! I felt like a fucking marshmallow… a big fat floaty squishy marshmallow!

Let’s just leave it at, he didn’t leave that night ūüėČ

Liv -x

 

 

awareness · beauty · blog · disease · health · medical

The Harsh Reality !

WRONG….

How very wrong I was, finally being diagnosed with something doesn’t, by any means, result in¬†being cured. ¬†After I had started seeing a specialist in dermatology he gave me a course of amoxicillin for 10 days, I didn’t have very high hopes as I seem to be a little immune to the effects of Amoxicillin but I gave it a go.. ¬†What a waste of time that was, I proceeded to be put on antibiotic after antibiotic because apparently, that’s what doctors give you if they have no idea how to treat what you have.

Just so you know I’m not going to bore you with 100,000 unsuccessful trips to the doctors.. OK back to the story, After 12 months of trying 5 different antibiotics, the doctor then turned around to tell me… “I don’t know what else to try, I suppose it’s something you’re going to have to learn to live with.” I was gobsmacked! I appreciate that doctors have a lot to do but not once did anyone explain to me what the FUCK Hidradenitis Suppurativa was or why I had it, and then to basically have someone tell you, “Oh yeah by the way, this God awful, chronically painful, ugly, worsening disease you have, yeah just live with it.” It’s safe to say I LOST MY SHIT..!

WARNING – It gets a little depressing here but it will get better. ūüôā

After this horrific realisation that no one could help me.. no one seemed to want to help me, I was at a loss. I was left alone, in pain and I slowly started creeping into depression. For about a year I did nothing about it apart from trying to manage my pain and mental state. When I was 21 I was homeless, I moved into a homeless youth hostel and it is safe to say the next two years were the worst because I felt so alone.. So alone that I surrounded myself with the wrong people. I did some not so great things and any attention I had from the opposite sex I acted on because I couldn’t believe anyone would want me long term due to how disgusting I felt and looked. I didn’t feel like I had the right to choose who I wanted to be with. Unfortunately at a few points in my life I saw no other way out so for months I thought about suicide.. I even attempted it (half halfheartedly however due to the guilt of being a coward and leaving my wonderful family behind) this was until I met someone, someone different. His name was Marcus, he had the kindest eyes and the warmest smile. I swooned over him for a short while at the same time telling myself, “Don’t be stupid Liv.. he wont want you.” ¬†One day I was playing a game of pool with him and I was wearing a white t-shirt (shitty idea that was!) He noticed blood under my arm and he asked so naively, “Are you OK? Did you cut yourself?” I was MORTIFIEDFUCK… SHIT OH MY GOD, NOW HE IS GOING TO THINK I AM GROSS?!? WHAT DO I TELL HIM?” I bit the bullet and gave the embarrassing answer, “Oh no it’s OK I have a skin condition.” He immediately sunk into himself, seeing in my eyes that I was embarrassed beyond belief, he felt so guilty but he gave no indication that he was grossed out, it just looked like he felt bad that he mentioned anything. I went back to my room to shower, change and apply my dressings all the while thinking, “Do I even try anymore.. ?

 

More to come ..

Liv -x-

awareness · beauty · blog · disease · health · medical · Uncategorized

The very beginning.

Hello everyone,

I’m going to strip this back to basics for you.. ¬†In this blog I am going to take you on a journey through the last 10 years of my life. ¬†This is a small disclaimer, ¬†I am not looking for anything from anyone, all I want to do is share my story so maybe, just maybe I can help other people in their life long battle with this disease or maybe even just educate people about how they can manage this illness.¬†I would also like to say that I am not a professional writer by any means.. AT ALL! There will be a lot of spelling and grammar mistakes in this blog, I will however do my best to get it all to make sense. I will probably (most¬†definitely) curse way more than people may like so I am letting you know early on, you have been warned! ūüôā I am writing this as it would come out of my mouth, I am a real gal!

OK so first things first, I have a disease called Hidradenitis Suppurativa (yes this has come up underlined in red as a spelling mistake) this is how well known it is(n’t)! We sufferers call it HS for short. HS is a chronic skin disease which is thought to affect 1% of the population and around 1% of that population get to stage 3. The basic run down of the disease is HS.. (also known as Acne Inversa), is a chronic skin disease characterised by clusters of abscesses or subcutaneous boil-like “infections” (often free of actual bacteria) that most commonly affects the underarms, under the breasts, inner thighs, groin, and buttocks. Basically our shitty bodies are uneducated.. they identify something in the body as ‘foreign’ and then attacks like its World War 3, I mean it really goes to town. I will explain more about the disease as we go on.

In the beginning, HS seemed like just an unfortunate exaggeration of puberty (boy how I wish it was!) When I was 15 I found a hard lump under my right arm, I was confused. I was a ‘late bloomer’ (delicately speaking.) I didn’t become a woman until I was just 17 so when I found this little bastard¬†I didn’t show or ask anyone.. I said to myself, “it must just be normal.” I thought this because we were all having problems with spotty faces at this time. A few months later I then discovered another and then another.. you get my drift. This is when it started to become a problem.. the pain.. HOLY MOTHER OF SHIT.. the pain! It was just a joke, I honestly thought I had something that was killing me¬†because I could not believe that something with that much pain could possibly be anything but deadly.

Stupidly I kept quiet, I was embarrassed and I felt ugly.. I felt alone for a long time (don’t worry this isn’t all going to be depressing) so for almost 3 years I suffered in silence. I would never take off my school jumper or wear anything that didn’t cover my arms and legs as this disease just got worse and worse. Eventually I saw about 25 doctors and 5 different specialists. Armed with a tonne of research I had done myself and numerous wrong diagnosis’s later, I was officially diagnosed at the age of 18.. Finally I had a diagnosis! I’m going to be cured ..right?

 

To be continued…