For Health-Support I started to write out my story. From when I first became ill until today. I didn't plan for it to become as long as it did but once I started writing I just couldn't stop. I found the experience oddly freeing and have written down EVERYTHING.
I didn't have time to finish it tonight, not even close to finishing it. This is literally just part one. The first year. How I became ill, and what that means. It has bee really weird looking back at it all and remembering how it started and where it all began.
I know this is long but I hope some people read it and maybe get something from it. I feel better about everything just by writing it and cannot wait to finish the rest of it. As I write the other parts of it I will post them as journals too so if anybody wants to, they can read them.
Lots of love,
I have always found writing about my health and my illnesses one of the hardest things to do, yet simultaneously one of the easiest. It also ALWAYS turns into an extremely long essay. I pontificate at the best of times, but having near on four years of information and life to pontificate about takes it to a whole other level!
It is hard because, if I am honest, I hate being ill and that I am going through this. I wish it had never happened to me and everything has changed beyond recognition from where I was four years ago. But, at the same time, it is easy. It has shaped who I am today and where I am going with my life - I am a proud disabled woman, overcome more then I ever thought I could, learned humility and compassion, matured, strengthened and grown, and have a future ahead of me that not only excites me but I'm proud to be achieving.
Four years ago I was just starting my ALevels. I was doing pretty good as well. I wasn't a top student to say the least, but was expecting to get AAB and was planning to do a year of art foundation at Leek College, before going to Oxford Brookes to do Illustration joint honors with Theology or Philosophy and eventually write and illustrate comic books. It was a good plan, and one I was happy with. Then in October of that year, 2008, I got Glandular Fever (also known as Mono). Before this I had never been sick, even as a child, and my body just didn't know what was happening to it. I was bed ridden for two months, and house bound for three. It had given my problems with my liver and I went from a size 12 to a size 8 in the space of two months.
At the end of January I finally was well enough to return to 6th form. However my education by this point was a near disaster. I had missed three and a half months of lessons, and so much coursework in art that I was forced to drop out of that class and just continue on with English Literature and Religious Studies.
We had thought I was getting better, but then I started to go down hill again. I slowly lost all my strength once more, become tired and lethargic, and started to feel pain all over my body. Once the head ache started it just felt like I was relapsing and I started to panic.
This continued on into May when it all came to a head. I had been struggling for weeks then one day in RS my hands just stopped working. I couldn't even hold a pen, became hysterical and unable to stop crying, and was taken to the doctors by my mom. Then came the blood tests. I'm not sure how many I've had but it felt like hundreds (I hate needles with a passion). Once everything that could be was written off with blood work I was sent to see a specialist. This woman I went to see asked me a few simple questions, poked me all over my body, got me to do some simple exercises and informed me that I had Fibromyalgia.
At first I was just relieved. The doctors had initially thought I might have arthritis and to an artist that sounds like a death sentence. But then it started to sink in what Fibromyalgia is. After more tests, including an ultrasound on my hands (this included an awkward trip to the hospital with my dad where we were sat surrounded by pregnant women), as well as gaining a pair of crutches which I had to use whenever I left my home, I started to understand it better and realize what it actually meant for me and my body.
Fibromyalgia is where your brain is sending pain signals all over your body and cannot process touch correctly. To me a pat on the back can feel like a punch, or just moving my neck the wrong way can cause a headache to erupt between my temples. I find the best way to describe my bizarre and unholy pain levels is to explain what happens when I stub my toe. To a normal person who stubs their toe it is a quick swear word, a shake of the foot and a glance around to make sure nobody saw. When I stub my toe, on a good day, it feels like I've broken that toe, several of the ones near and also bones in my foot. On a bad day it goes from my foot, all the way up my leg, into my spine and has twice also given me a migraine.
Along with the pain and over sensitivity comes several other lovely side effects. This includes fatigue, insomnia and poor quality sleep, "fibro-fog" (memory loss, distracted easily, can struggle to take in new information), anxiety and depression. When it comes to depression it is often that Fibro' can lead to this. It is a lot to handle and can be over whelming at times: it would take a person stronger then me to not become depressed. This is also, probably, because how you feel emotionally effects how your body works when you have Fibro'. When you're happy everything is easier, from walking to lifting thing to writing to everything inbetween! But any sign of stress or emotion distress and your body can start to fall apart. The worse I have ever had it is loosing the ability to walk altogether, coupled with a migraine, hot and cold flushes, uncontrollable shaking, as well as vomiting.
Anyways, in June it was time for me to take my ALevels. The first one was a disaster. I had to dictate to a scribe as I had lost some of the use of my hands, and I found it near impossible to string two sentences together. It wasn't just that I had missed so much school - I felt ill, had a throbbing head ache due to stress, my neck and back hurt couldn't process the questions properly. It was the longest exam of my life and I knew I had failed it. A few days later it was time for my English Literature Synoptic Paper, aka. HELL. 10 minutes before the paper even began I was throwing up. I was 15 minutes late into the sociology room that was my exam room and took one look at the first question - and I honestly don't remember much after that. The next thing I know I am sat in the first aid room, once again crying and not sure what was going on.
At this stage all I could do was drop out of my exams. They were making my health even worse and it had gotten to the point where I would have been lucky to get an E. And it was also at this point that I gave into my depression and health and my spiral began.
I found myself avoiding contact with people in real life and making any excuse to not be around my friends. I'd plan things then panic at the last minute and cancel them. On a blazing hot day in summer I canceled a BBQ with my friends because I was worried it would rain. I had joined VF at the start of June and found myself spending all my time on here - and if I am honest it was the one thing that saved me. When I looked at my friends who I went to school with they were everything about my life and future I had had before I had gotten ill. They had done their ALevels, pretty much all of them were off to university and often good universities. They could walk, and think clearly. I felt stupider and slower then ever around them - it didn't help I found it hard to explain even to my best friends what I was going through. Yet online there were people who hadn't known me before, and not everybody had this perfect future. I found others like myself who felt lost and confused. I found friends and a family. I found myself living in this online world where I finally felt safe and able to function, where nobody could see my limp or winces of pain. I finally started to feel like me again.
That summer was the longest summer of my life. It felt like I had to learn to do everything again. Simple tasks had become problematic. Even making a cup of tea had become an issue with the fact I wasn't strong enough to lift our kettle at home - mom had to go out and buy me a travel kettle that took five minutes to boil enough watcher for one cup of tea, but was the only thing I could lift. Learning to walk again was also a pain (pun intended). I have never been the most coordinated person on the planet, and add two crutches to that mix you suddenly have a problem! I found myself tripping up over them, forgetting how to use them, falling over, going so slowly a snail could have over taken me. And more the anything, the thing I struggled with the most, was the feeling of embarrassment at the fact I couldn't do anything about it. I was 18! I should have been at festivals and with my friends! Getting ready for my future. Instead I was sleeping all day and spending my nights online.
The one thing that saved my summer was visiting my grand parents in Upstate New York. Being taken away from all my problems I was having and staying in a place a felt safe, with two of the people I loved most in the entire world made me feel so much better then I could ever say. The warm weather mixed with all stress and anxiety being left at Manchester Airport meant that I was moving a little better and starting to function better. I felt happy and ended up staying out there for six weeks, instead of the initial three weeks we had planned. They will never know how much that summer meant to me, to just get away from my problems and, for a while at least, feel like my old self and pretend that this wasn't happening to me and everything was okay.
My Alevel results came out while I was still in America. Presuming I had gotten all U's I hadn't even thought about them or wanted to know. But we got a call from 6th form: thanks to the head of 6th form putting me in for special recommendation I had been awarded two C grades! I might not like my high school, I'd even go as far as to say I hated the place, but I will say this about them: they saved my education. And for that, I thank them.
Spurred on by the hope that I could still manage to get the UCAS points I needed to get into university and achieve the dream that was a normal life, I changed my Leek College plans to do the photography ASLevel and ALevel all in one year.
Photography seemed perfect for me. To my rather naive mind it meant pointing and clicking a camera - even with my lack of strength and erratic hands I thought I could do this easily! Then I'd work on becoming better, do the art foundation and continue with my plans of becoming a graphic novelist. I honestly never saw the next few months coming or how they would change my whole future.
Back from he caravan - a lot of cult changes. Content Alexa (:
July 28, 2012, 08:21:am
So glad to be back.
A week away from the internet has done me so much good!
But a lot of changes with cults are going to be happening...
...Leaving a lot of them I'm afraid.
And going to join one I've wanted to for a while.
But leaving five will mean I'll have real time for Aerial, Health-Support and Heathers. My three favorites, the ones I love and the people I love
I'm glad I've sorted my head out a bit.
But sorry I'll be leaving a few cults which I do love, but I'm just no longer motivated or really have the time for to do them justice.