What it means to be strong

Strength is often thought to be categorised as muscular or physical ability of a person, rarely is it appreciated for the strength of someone’s heart and mind.

It should come of no shock to know it hasn’t always been the easiest for my family and I, 1 step forward 2 steps back. Whether it’s been due to illness, passing of loved ones or trouble makers, there always seems to be another obstacle in the way just after passing the last. I think it takes a certain strength to deal with the hand we were given and to every single time come out stronger.

I don’t think everyone is strong, I wish everyone could be but I think it takes a certain type of person to be given hell and then proceed to come out stronger than ever before. We often find ourselves in a place we would rather not be in, like many do, but many a time we see people spiralling down rather than climbing up.

Strength is being given hell and rising above it. Strength is fighting a war you’ve already lost and carrying on. Strength is knowing what suffering, pain, anger and heart ache feels like, and learning to over come each obstacle no matter how tricky. Terrible things happen to good people, people that don’t deserve the golden platter of doom, served with a side of extra doom and a splash of more doom. Terrible things that make us want to cry, punch, kick, scream. Obstacles that project the illusion of drowning in our own emotions, continuous waves. Things that make us want to give up.

However, strength is not about being seen to be okay, to not look broken or as if you’re struggling. Strength is about crying, screaming, being angry at the world and giving it the middle finger. Strength is about allowing yourself to be weak, and then picking yourself back up and carrying on. Telling yourself you’re good enough, tough enough, strong enough and worthy of every damn fight it takes to be happy. No matter what.

I know that determination and strength doesn’t appear over night, and it doesn’t come in swings and roundabouts. I know that the strength I carry, the strength my family carry, is worked for every single second of the day with the scars and bruises to show for it. No matter how many setbacks, no matter how many times I fall, we fall, we will set our goals and reach for them with all our might.

Not everything is easy, it never will be and I know that, I’m sure you do to. So when I’m reaching for my goals, when my mum, dad, brother and I are trying to push through the tough times, I remember that there is beauty and always will be in the many imperfections and perfections of life.

Dizzy Driving

As I’ve just turned 17, learning to drive had very quickly moved up to the top of my priority list the coming weeks before my birthday. There isn’t much difference from the casual 17 year old that wants to wiz about the place in a flashy new car and me. Apart from the small problem of being chronically ill and having the attention span of a damn gnat. Small problem I said, small. Very, very, not so very, small problem.

So this very small, not so small problem, is something I’ve decided I can overcome, if I listen to what this hot mess of a body has to say.

I’ve recently had two driving lessons, the first of which started on my birthday, and I was surprised with an actual car. Yes, you heard me, read me, correctly. I’m incredibly grateful for such a wonderful surprise and I truly am so thankful for that along with everything else my parents do for me.

So far, so good. My lessons are going very well, and I haven’t had to cancel one yet. It’s early days and I have a way to go, but so far the excitement of driving has distracted me from any symptoms I’m feeling, right until I get home. I don’t know if it’s because I have to concentrate on keeping myself safe or not, or because I’m so excited every time the lesson comes around. Either way, I’m not complaining.

Of course there will be days I feel like I’ve been running that much I could actually star on Scooby Doo, but I’ll face those days wisely. I don’t run by the way, like ever. If I ever run, it’s either away from something scary or towards a fridge. Either way, you’d better come with.

Brain fog is as much as a problem for me as fatigue and pain is, so not screwing up massively and plummeting into the nearest lorry is a good sign so far. I haven’t found listening and understanding what Lee (my driving instructor) is saying too hard. In fact, I would very easily say that your instructor is the most important part of this process. If I had someone who didn’t break it down for me, wasn’t aware of my disabilities and had little to no patience with me, I’d be in a completely different state of mind right now. My mum made sure that he was suitable before we even welcomed the idea of booking with him.

As far as actual lessons and my fatigue go, if I wake up and I have that gut feeling I’m not going to be able to even talk normally today, the lesson will be cancelled. I’m not about to risk anyone’s life. Actually passing will be similar. On days I really feel like I can’t, I will ask someone else to drive me. I may not like it, and I may very well have to have a good old talk to my body, a good telling off, but its better than anyone getting hurt. I could never live with myself if I hurt someone, so I will just have to suck up my pride and ask for help. Shouldn’t be too hard, right?

I haven’t just thought about driving, and how I will have to achieve my goals using alternative routes if push comes to shove, but also what I should carry in my car. Now the obvious stuff like a spare tyre and a first aid kit isn’t what I’m talking about. I’m thinking more, ice-cream backup spoon, well spoons, medication, heart rate monitor and a million pair of sunglasses. Maybe a million and one if I’m feeling extra sassy that day. The spoons for well, duh ice-cream, medication for surprise headaches and back/joint pain, a heart monitor just in case my POTS wants to come out and play, and the sunglasses to prevent any headaches in the first place. I’ll add to the list as we go, but for now I think that’s a good start.

I’ve been looking forward to being able to drive for a long time, as many new doors are opened and a little bit of independence is given. It’s early days though, and I have much to experience.

Body VS Heart

I was given a body with limits. My body can only with hold a certain amount of normal day activities without retaliating in the only way it knows how to. I’m restricted in so many ways, chained down by pain and fatigue and sentenced to a life time of it.

The chains sometimes feel so heavy, breathing properly is difficult. Other days, the restraints of my illnesses are manageable, almost like I can swing them over my back and get on with my day. Other days, I’m lead into a sense of false hope and security, the chains are barely there, I feel free. No good day comes without 3 bad ones, it’s just how it is. I was given a body with limits.

Oh but my mind. I was given the mind of an explorer, an adventurer and a daredevil. My mind has no limits, a source of endless motivation and imagination, creativity and freedom. At heart, I want to climb, run, fly, ride, I want to be free. One with nature, nature with I. I want to climb the tallest mountains, run with the wind against my face. I want to explore the world, and appreciate every inch of beauty I come across. Grand or small. I’m an explorer at heart, yet my body has limits. It seems only unfair I was given the body of a dead person and the heart of a child. Unfair yet unchangeable.

I’d like to explore different cultures, and meet new people. I want to camp, make bonfires and dance around them with people I love. I want to sing, dance, party. I’d love to visit museums and embrace history. I’d like to eat in an American diner, I’d like to walk along the streets sheltered by trees. I want to be given endless energy, because hell would I make the most of it. I’d like to do something as simple as working behind a bar to pay for my own horses, and treat my parents because hell do they deserve it. There is so much I want out of life, yet I’m afraid I’ll be forever watching from the side lines.

That’s a huge fear of mine. Watching from the side-lines but never playing the game. It terrifies me, and I envy the people who take it for granted. I’m too familiar with the four walls of my bedroom for my own liking. Why should I be trapped within the small space I call my bedroom when there’s a whole world out there for me to discover?

I’d be grateful if I could simply go on a bike ride again, play with my brother and ride all day. I miss being normal, I miss having no limits and I miss the feeling of being free. Now, I dream. I dream about the things I want, and boy is it a tease.

But, one day I will do something great.

One day, and one day, I’ll turn around with a bag on my back, and car filled with loved ones, I’ll tilt my head to the side, crack a smile and I’ll say ‘Screw you body’.

Daddy’s little rocker

Throughout my life, I’ve been one to appreciate great music when I’ve heard it. Not the pop crap you get nowadays, but the great and passionate rock’n’roll goodness.

One of my earliest memories and certainly one of my fondest ones, was set in the passenger seat of my dad’s truck, chomping down soggy toast that grandma had given us on the way to school. Every single morning, on the way to my grandma’s house and then school, my dad would find a new but classic band for me to listen to. I remember listening to my dad speak about the bands with such passion, as I looked wide-eyed at his bearded face as I munched on my over buttered toast.

If you ever have the pleasure of listening to my dad talk about his passion for music, you’ll understand me when I say you can truly tell how proud he is to of been apart of that musical era. After all, dad grew up with it on his doorstep, apart of the greebo, rocker, punk times. I have to say, hand on heart, music has built one mighty bond between him and I. Out of everything we share common interest in, music has always won.

We used to listen to all sorts, ever album he has, I’ve heard at least once. It makes me laugh now sometimes, when my dad puts on something different for a change, and I find myself knowing the words after years and years of not hearing that very song. In fact, it won’t just be the song, but the entire bloody album.

Now, I’ve been pretty lucky on the music front if I may say so myself. At just 11, I attended my first ever concert. It completely stunned me if I remember correctly. I was completely taken back, as car stereo to live show is quite a change in scenery. I can’t remember everything about that night, although I do remember a lot, the one thing that stood out was the smile on his face. My mums too. That and the dreadlock weirdo hitting my mum in the back of the head with his hair. Good times, good times.

It’s funny because I’ve always been different, right from a very young age. I don’t wear what most girls wear, I preferred mud and football to dolls and makeup and I didn’t like the music everyone else liked. Up until year 6, I never had a problem with being the weird kid. I had friends, I was liked but I could still be myself. I can’t remember why exactly, but I became ashamed of not being able to sing with my friends, the latest songs of 2012. I took it upon myself to learn to like that music, maybe then I could sing along with them too. Let me tell you now, that did not last very long. A month maybe? Long story short, I hated the music and I hated trying to be something I wasn’t.

Pretty quickly after that, more than ever before I was proud of who I was. I went into high school (year 9) proud of being different, and unlike every other girl. My music taste didn’t broaden at all, I just got more and more into it. As I said before, I liked my music before and I’m pretty sure I’ve been a Black Sabbath fan since the age of 5, but after a series of very annoying and unfortunate events in my life occurred, I became more dependant on music than ever.

Falling ill sucks, and boy did I struggle with the whole chronic illness concept for a while. I tell no lie, I still struggle now but not half as bad. I remember being stuck in my bed, with my newly bought iPod I had been given for Christmas, and listening to the same songs on repeat. It wasn’t until several months later, after making it out of bed, I started watching the music show ‘Kerrang’. Again, like I’ve mentioned before, I’ve always been a fan of rock and metal, and everything in-between. However, I got into the programme fairly quickly. I can’t remember which happened first, but near enough the same time, dad introduced me to a band called Slipknot. My dad isn’t a huge fan himself, although I dragged him to one of their live shows, but he told me how the band’s identity was unknown until someone put two and two together. That story alone made me one of the biggest slipknot fans out there.

It was soon afterwards, I got into heavier music than what I was used to, like Motionless In White and Bullet For My Valentine. I went through that kind of awkward stage of trying to be super gothy. I’m so thankful for the lack of photos taken during that time. Never again. My passion for all sorts of different music grew, and my mum and I would listen to it in the car when she carted me around to get some fresh air. My poor mother, some of the stuff I played was bloody awful.

I could talk forever about music. After finding my own feet in the music spectrum, my music taste is kind of how it used to be. I got tired of the whole weird screaming music, and found the type of music I do actually really like. For me and not just because every other weirdo liked that band. I got heavily into Five Finger Death Punch about two years ago, heavy enough while still being capable of understanding the damn words. Luckily for me, I got the entire family into them. We’re actually seeing them in December, and its safe to say I’m not the only one excited. Although nothing will compare to my forever favourite band ACDC.

I have a million music memories, shared with all my family, including the million and one concerts my dad and I have ended up at. I’ll talk about that another time though. One memory that really sticks out to me, is the day my dad said something along the lines of ‘you wouldn’t be where you are now without the soul of music’. As cheesy as that may sound to some, he’s right. Music has kept me going when many times I’ve just wanted to sit back and give in. I’ll be forever thankful for my dad making music such a huge part of my life.

Sugar Fuelled Day

Yesterday was a busy day, to say the least. I had to attend another college meeting about my next year at college, as I’m unable to keep up with a level 3 course and 2 GCSE’s along side it. In simple turns, if I tried, I would crash and I would burn.

This year at college has been hard enough, a lot of challenges to overcome but all which has added to my overall determination. The plan is to do my English and Math’s GCSE’s, achieve the best possible grade and try and catch up. Long story short, I’m 3 years behind where I should be. A couple reasons for that being my sorry excuse for a functioning body, and my high school denying me my entitled home tuition time.

Despite being at home, I achieved a B and a C in my Science GCSE, and a Distinction** in my B-Tec Art and Design. This year at college, I managed to get my English functional skills, hopefully fingers crossed a Merit in my Level 2 Digital Media course and I’m working on my Maths functional skills as we speak. Even if it is a bit of a ball ache.

Anyway, after a very long chat with some staff members from college and noticing her wonky eyeliner dragged across her eyelids, we managed to get the help we wanted and a goal in reach. Nothings set in stone, as what we want if above the college, but I have a feeling for once it’ll go our way.

I’ve had an extremely busy week, well two weeks, with college and constant trips to a hospital 3 hours away for some fairly unpleasant tests, so as you can imagine I was fairly drained of energy. How can I get a short but much needed energy boost you ask? SUGAR. Mama took me to a place called Oatcakes and Milkshakes, our first time there actually. Now when I say these milkshakes are monster sized, I mean you could feed a whole country with just the damn toppings.

I had a Unicorn something, I cant remember exactly what it was called. However, it was pretty much made with a dash of unicorn dust, a can of cream, a handful of sugary sweets, a fountain of bubble gum flavoured drink and a huge spikey multi-coloured lolly sticking out the top. My thoughts; a unicorn pooped in my cup. My mama had a banana split monster milkshake, I’m not entirely sure what flavoured milkshake it was, whatever it was it was certainly a dance for my taste buds. The jar was covered in hard dripped chocolate, a banana placed under a mountain of cream, a few glazed cherries on top, finished with a splash of some sort of yellow sauce. Safe to say my mum enjoyed hers as much as I enjoyed mine. Thanks Ma!

After a sugar high, we ended up visiting my Grandma and Grandad which was nice, I don’t seem to see them too much at the moment. College and various other things have been getting in the way, so it was really nice to catch up and watch my mum get a little stress break talking to them.

I think I mentioned earlier, I had a rather busy week. Well, all honestly I’m surprised I’m alive. I’m surprised I’m even functioning to be honest, but here I am just about hanging on. Homework is coming out my ears and even when I think I’m done with college, the work still piles up. It wont matter too soon anyhow, we’re off on holidays abroad Sunday. All I have to stress about then is the flavour of my ice cream.

Tap Into Your Creative Side

Art; it’s a beautiful part of life that reveals itself in any form of self expression.

I find art in almost anything, it’s who I am, creativity running through my veins as a part of me. Any given moment, someone’s or even sometimes my own personal creative perspective can leave my mind swirling, eyes wide open, jaw dropped. I love that the smallest noise, scent, taste and sight could inspire the most amazing things.

My own personal opinion, art isn’t just painting or drawing. It’s looking at something, getting inspired and using the only two tools you need, your mind and hands, to create what ever the hell you want. Drawing, painting, photography, writing, building, it’s all expressing your creative dreams. I’ve always been into creating anything, ever since I was little. When I was younger and spent a couple hours with my grandparents, I’d get these two huge bags of scrap paper, boxes, anything (all that my grandparents had collected for me) and my granddad and I would just go to town. Normally, we’d build robots, using cereal boxes as the head and body, toilet rolls for the legs and then paint over the top of them to create the final finished piece.

I also used to write a lot of short stories, not just in my English classes but in my spare time too. If I had even a remote resemblance of a good idea, off I went writing about it. I look back on my work from when I was 11, and yes my spelling is bad as it normally would be for year an 11 year old, but I had the same creative outlook and imagination as I do now. Something I never want to lose.

I find a lot of relieve in writing, when my heads swarming and I can’t think straight, writing how I feel and expressing myself through words of any kind helps tremendously. I find writing and describing every little detail to the point of over doing it sometimes, to just give me a short break, helps a great deal. However, there are times no words can describe what I have envisioned, and the only way to get out what’s in my head, whether an idea or a thought that’s been bothering me, is to draw.

Drawing, another passion of mine, if not the biggest. I love drawing, I love the fact my hands can make what I see. It puts me into a relaxing trance almost, the only thing scrambling in my mind is the question of whether I got that line right. I used to attend art classes at my now college when I was younger, they had a group every Saturday morning. They didn’t necessarily teach you how to draw better, or better your technique of lines and structure, but more of exploring different styles of art, opening that imaginary arty looking door featured inside your head. I went for several years, I loved it. I never wanted to stop.

I want to start sculptures almost, creating furniture or animals/people from old car and motorcycle parts, introducing two passions to each other. My dad’s going to help me, I have so many ideas swirling around. I also want to write a book, I love reading, writing, drawing, imagining, I love the idea and the work process it involves. The commitment and dedication, passion. Smash booking and journaling is something I have recently been exploring. I can include my photography, writing, drawings, painting and collaging work into one and create whatever I see fit. No one else has to see and it doesn’t have to be perfect, that’s the beauty of it. It can be perfectly imperfect to me and only me.

There is just so much I genuinely want to just sit there and do, spending hours upon hours putting my whole heart and soul into it. All my drawing, writing, creating, painting, it’s almost like my own personal type of therapy as well as passion. When I’m creating, nothing else matters, just the thoughts in my head. It’s kept me sane to say the least, well as sane as one can be. I hope in several years time, I can look at my work and see how much I’ve improved and be proud of what I hopefully have accomplished.

Born a Rock Star, M.E Awareness Concert!

Being M.E awareness month, I normally plan to do something dedicated to raising awareness and maybe even some money but most the time never follow through with my plans. One reason being I’m not well enough at the precise moment in time, the other being we just can’t make it happen.

This year I was determined, what my mother calls a fighting spirit. I was leaning up against the kitchen counter, watching my mum stir the curry sizzling away in the pan, talking to her about my ideas. I don’t even remember how we came to the conclusion, yet Lewis, my younger brother, ended up suggesting a concert performed at his school with his band ‘Razor’ (courtesy of my dad). I got so excited, I ran, well jogged… powerwalked up the stairs, launched myself onto my bed and wrote down all my thoughts, plans and ideas for raising money, eventually forming a some what well written letter to the head of his school.

Skip forward a day or two, my brother had already asked his music teacher, who is a member of his band, planned everything out and managed to get the rest of the band on board. I however was still waiting for an answer. I finally got what I was looking for, the go ahead, and everything was planned to perfection.

Today was the day of the concert, broken down into two sections. One half for year 5 and 6, the other 7 and 8. My brother, he plays the drums in his band. He doesn’t just play the drums though, he puts his heart and soul into it and my god, is he good. His playing leaves me shocked every time I watch him play, a true musician, young or not.

I managed to read out a short speech on my experience with the illness, and Lewis’ music teacher introduced it. I had the worst case of shakes ever reading it, but I did it, twice, in front of 450 pupils. Anyway, it was really nice to see his teacher so passionate about helping me and 250,000 other people in the UK. A great act of kindness, taking a weeks notice and planned this concert to the second, raising as much money as he could possible. You don’t get many people like that anymore, do it because they want to help and not for their own personal gain.

Razor honestly did amazing, raised a lot of money too. My brother, he’s a little star. We fight like dogs sometimes, get on each other’s nerves and like to tease each other on a regular basis, but he will always be there for me, as I will him. I can honestly say I’m so proud of him, his pure talent, kind heart and the person he’s slowly becoming. So yeah, proud big sister moment here, I think proud mum and dad moment too. After I had read my speech out and he started playing, I caught myself grinning from ear to ear. I looked to my left to see a row of 4 people, doing the exact same thing. You didn’t have to ask my parents whether they were proud or not, you could see it in their eyes, their smile. I love that sight, it truly makes me really happy. One of many, many, MANY moments I’m reminded just how amazing my family is.

Today was a success, two proud parents, two proud grandparents, and a proud big sister, all in the name of M.E. From all the bad this illness has brought me and my family, today we all fought back and hell did we do good. We’re in this together.

Guilt

With pain and fatigue comes guilt.

Guilt. It’s something we all experience throughout our lives, ill or not. However, the stomach aching feel of being a burden to those in your life becomes increasingly harsh at times when living along side a chronic illness.

Something for me personally that differs in difficulty, however at times feels like the entire world on my fragile back. At times, it can be my greatest enemy, tricking me into a state of mind I don’t want to be in. The sort of state that leaves you feeling like you’ve wrecked your families lives.

I know that’s not true, no matter how hard it has been to fight, my family have always dealt with it full force, as have I. I know they’re still happy, maybe not all the time but they are.

I’d like to say it gets easier, but overtime things start to become more noticeable with only yourself in mind to blame. I wish I could be healthy, I wish I didn’t have such a huge affect on my family, but no amount of wishing will solve my problem. No matter how tightly you close your eyes.

Being ill, it gives you a new life. A life I didn’t want for myself or my family but a life at that. Which once was a time of joy and happiness, days passing by spent with my little brother playing Lego or creating dance routines, has now turned into all but a fond memory.

They say you shouldn’t feel guilty, it’s not like I asked for it they say. No matter how many times I am told those same exact words, I will always feel guilty for how my health has affected us.

I remember in the summer when I was younger, back at our old house, my brother and I would spend the whole evening in the garden bare foot, playing together. We had a little orange slide in the back of our garden, too big for us now but at the time felt like the biggest slide in the world. One of us would lie at the top, half on the steps, half on the slide. Then the other person would lie flat on the slide, hold onto the other persons hand and the person standing on the steps would have to pull them up to safety. If we couldn’t and we lost grip, we’d fall into the sharks or lava. Whatever we came up with at the time. We could of spent forever doing that, boy were we close. He was my best friend, still is.

We had a lot of days spent like that, my brother and I. We would build shops from Lego, make the funniest dance routines on the trampoline to show mum, dress up together, anything. One of my favourite memories takes place in the back garden, mum sitting on the bench  just to the right of the kitchen window. Lewis and I chasing each other round the garden, cartwheels and picking daises. My dad came home from work, made his way to us and the dogs, Golly and Gemma, sat down next to mum and we just spent the evening like that. Something I’ll always remember.

This illness, this thing, it makes me so mad.

We can’t have ‘normal’ holidays anymore. We used to spend two weeks in the caravan up in Scotland, my favourite place to be. Days spent walking in the woods, visiting different sites, playing in the sea and a family game of football. At my worse, we couldn’t do that. I remember we went up to Scotland again this one year, and everyone was so excited to go visit this museum place if I remember correctly. I was so mad at myself for not being able to walk up those damn stairs to just get into the place because they had no wheelchair access at all. They said it wasn’t a big deal and we went somewhere else but that sort of thing sticks with you.

Not only did I ruin potentially good memories for us, but I feel like I ruined a whole lot more. My mum quit work to become her 13 year old daughter’s carer. For a portion of my brother’s life, he grew up without his best friend, his sister. Holidays ruined, anxiety heightened.

With friends, you can very much hide them away from the pain of it. It’s easy. They come and go as they please, they have a choice. They can stay or they can go. However, with family; close family, they have no choice. Just like me, they can’t press the pause button.

I think out of everything my mind manages to focus on, thoroughly flipping over every little thing, taking Lewis’ big sister away from him was the hardest thing I’ve ever had to deal with. He got so mad, and couldn’t understand why I wasn’t able to do everything I could before. You can’t ask a 10 year old to understand that.

No matter how guilty I feel, I will always be thankful for having such a truly amazing family to support, love and help me through my journey. I’m surrounded by such wonderful, selfless people every day, it truly makes everything so much easier. Living with M.E is hard, I imagine watching someone you love go through it is even harder. So thank-you. You may not have a choice in whether I’m ill or not, but you got given hell and you made it beautiful. I will be so thankful if I grow up to become half the person you are.

To my brother; I’m sorry. I’m sorry you lost your best-friend for a while but I have every intention of being there for you forever. Your best friend and the person you should call to hide the poor git you ran over.

To my mum and dad; thank-you for being such amazing parents. You make me laugh every single day. You both have made me the strong willed person I am today. You have both shown me how to dance in the rain.

 

 

How I explain a part of m.e

I get asked on a regular basis why I’m restricted in many ways a healthy person would consider ‘normal’, and like always the words ‘I’m chronically ill’ seem to spill out my mouth without a second thought. It’s become a common phrase in my English vocabulary, natural.

Not so often but often enough, I’m asked by fellow warriors how I go about explaining my conditions to someone who hasn’t even heard of anything but cancer.

Both of these questions always seem to lead onto more questions, out of curiosity or genuine concern. However, more than likely they’re just being nosey. So how do I explain my condition/s?

M.E otherwise known as Myalgic Encephalomyelitis destroyed what I knew and replaced it with a life I have had to work hard to have. I don’t understand the condition myself, so how can I possibly go about explaining it to someone else and expecting them to understand? Whether they understand or not at the end of the day doesn’t matter a great deal, they probably only asked for their own self interest anyway. It’s more than understanding to me, it’s accepting and supporting.

So the question I get asked the most: ‘What’s wrong with you’ or ‘What’s that, what’s M.E?’

When asked this question, a different answer seems to crawl from my brain in the form of words almost every time. Why? Because I’m constantly trying to find the best way to explain such a huge part of my life. I used to be so scared to tell or explain myself, why I was in a wheelchair but could walk a few steps and stand up. It was embarrassing being stared down at like you’re some form of scum using a wheelchair you don’t need. Wrong. I did need it, more than you could understand.

This is how I’d like to explain it:

M.E is a chronic illness with no known cure or cause.

I’ve just ran a 30 mile marathon,  I haven’t slept for the last 5 days and I now have weights tied to each of my limbs forever weighing me down. I haven’t eaten in 2 days, my backs been stamped on multiple times and I’ve has a constant migraine for the past 3 days. On top of all that, I’ve been dropped in the middle of the ocean and I have now been paddling to keep myself afloat, my head just above the water, since forever.

None of that is true but, it’s exactly what it feels like.

I have to deal with that everyday, no break, no pause button. All that and I’m still expected to come out smiling.

How I actual explain it:

I get really bad pain throughout different areas, and over whelming fatigue that riddles my body. No amount of rest or sleep will make me feel any better.

“No, I can’t walk very far.”

“Yes? Yes, that’s why I can’t come to college all the time.”

“Em, no. There’s no cure.”

“No, exercise and diet will not help.”

In reality, I don’t spill my feelings and pain out, not like I wish I could. I quickly learnt that no body really cares and if they do, which still shocks me down to the core, I’m then given an hour long speech on how their friend had the same and they cured it with exercise and a healthy diet.

Anyway, I was interested in how people in my family work around the whole explaining the wonderful and mysterious impending doom that M.E just happens to be. I asked my little brother, who isn’t really that little at the moment, how he explained my illness. His reply was:

“I told my teacher you had M.E and when she asked what that was, I said it stood for Myaldhfhfj Ejfkhffdhhtkf -tis. I told her it meant you were in pain, it wasn’t very common and you were tired all the time.”

If that isn’t one of the best explanations you’ve ever come across, you’re doing life wrong.

I love you Lew.

I asked my mum earlier when she was drinking her well stirred, still hot cup of brew parked on the sofa. She said she’d given up explaining and now told people that it’s best to look it up on the M.E association website. A good answer indeed.

Truly, I have discovered no easy way of explaining my illness. The easiest way to understand it is by spending time with me, being there on my bad days and good days. Comparing the two.

I suppose M.E doesn’t deserve an easy explanation, after all an easy explanation is not best suited for a complicated illness. Finding ease within explaining the condition could potentially be insulting the jungle of madness which is M.E, and those who battle it every single day.

Maybe learning how to explain something like M.E is something I’ll figure out while learning to dance in the rain.