Hand in hand, Illness and Isolation

Understanding an illness is one thing; or should I say illnesses. Understanding the isolation that comes hand in hand with an illness is a completely different ball game.

I’m not talking about the isolation I once knew too well. I’m not talking about the isolation that comes with only seeing your family for months on end. No, I’m talking about a different isolation. One that I think is much harder to explain.

I have various different people in my life, all of who play an important role. I go to college and I interact with a close friend once in a while, and I see my boyfriend when I can. That used to be all I wished for, but selfishly I still envy other people. I have one close friend, and a couple others I’d just consider ‘friends’ but none of which really get me or understand a whole lot.

The isolation I feel now is different. Back when I was bed bound and crippled by fatigue and pain, I missed out on everything. School, friends, normal social interactions. What held me back then was my illnesses and the inability to function like a remotely normal human being. I was too ill. Now though? I’ve improved enough to drag my ass through college, and meet genuine alive, non imagery, real to the touch people. So what’s stopping me?

I sit at a table in Maths, and I know no one. I’m part time which is amazing for my health, but takes away the chance to meet new people on a full time course. When I walk into a room already crowded with people, I have no place in any of their life’s. I am forced to sit on a table where the only person that acknowledges me is my teacher. I sit and think about how it must feel to be liked by so many people, and to never face the embarrassment of being the quiet girl with no friends. English is better however, I’ve managed to make some friends but the struggle is still fairly similar.

The handful of friends I do have are good, genuine people. Yet isolation comes with having them too. I watch them experience nights out with their other friends, laughing and giggling; forgetting the world. It’s hard to watch. No one considers asking me and I just end up feeling forgotten. I think this is where my illnesses play into it.

I think because for the last 2/3 years I’ve never had the opportunity. It was never a case of being asked and considering it, but always a case of it never being a possibility. I now can go out and I want to, I sure as hell have worked my arse off to get here but it’s as if I’ve been covered with a sheet and totally forgotten about. I think I’ve made it abundantly clear I want to go out and about, experience what I should of done in high school but no one seems to remember me. Part of me thinks I don’t get asked because they expect me to say no. Maybe it’s just too much trouble inviting the girl that’s sick. Both are kind of crappy.

I don’t just want to go out to experience what a house party is like or spend time with a group of friends till early in the morning, I want to do these things in hope of making friends. It’s a vicious circle really. I cant get invited to anything to make more friends which I was hoping to make at this party I never got invited to, so they could invite me to others.

My family have told me to give it time, the day will come when I’m wanted and included in other people’s life’s. I just thought it would of happened already, I think I’ve waited long enough. Don’t you think?

I hate the fact that other people’s fun upsets me. I never wanted to be the person that gets jealous over other people’s happiness; yet here I am, feeling left behind. It’s not true and I’m not alone, I have an amazing family, all of which are my best friends and always will be till I draw my very last breathe. I do have friends too. Yet this overwhelming sense of being invisible can easily eat away at my good mood.

I’ve tried talking to certain people about it outside my family, maybe in hope of some understanding and progress, but I don’t think they do understand. I almost feel desperate, wanting what they have, to be loved and included. I think we often take for granted what we have, I sure did before everything was taken away from me. I feel like people over look the impact and beneficial factors of having friends because they’ve never known any different, and not being invited to something every once in a blue moon , isn’t a big deal. From someone who’s never experienced any of that, it is. Heck, I cant even get my own cousin, MY OWN BLOOD, to invite me to a single party which he has on a regular basis.

The lack of understanding is isolating itself, but being over seen constantly just adds to the feeling I’m already trying to get rid of. At times I feel like I have to insert myself into other people’s life’s to get anywhere. I have to ask about going out, I have to reach out first. I’m always the one at home while everyone else takes for granted the memories they are making. The wild and exciting ones they’ll tell the grandkids. But I can tell you this. I’ve been through some hard times; my whole family have. Every single time no friend nor foe has been there in support, just my amazing family. If I end up a weird old horse lady with 145,876 dogs, cats and ponies then that’s fine, my family are all I need. I have a friend, a best friend and an unbreakable bond in each and every one of them. That’s all I need.

Easy P.O.T.S Friendly Hairstyles

POTS, Postural Orthostatic Tachycardia Syndrome, is something I have carried with me for the past 3 years. Like mentioned before in previous posts, POTS is one of my most debilitating illnesses.

Asides from being dizzy all the time and passing out whenever my lil ol’ body thinks best, POTS affects every single aspect of my entire life. Something I started struggling with when my POTS worsened, is putting my arms above my head. In case you didn’t know, people with the condition have awful body circulation and basically nothing works the way it should. When I, and many others, attempt to put our arms above heart level, it starts to feel like the blood is draining from our arms. I think it’s safe for me to say it hurts quite a bit and most the time your arms start to cramp and ache; all of which is on top of the palpitations and dizziness.

Making myself feel better on pain stricken days normally means trying to look as okay as possible without further hurting myself. Doing your hair comes with it’s own personal set of challenges, so I came up with a few, fairly easy hairstyles which don’t worsen your POTS/pain.

Disclaimer: My hair doesn’t look the best as my health has beaten it to an inch of it’s life. The weird colour in my hair is old dye, something I have had to stop due to a previous diagnosis. I also have a shaved side, however all these hairstyles work with normal haircuts. 

 Half down, half up.

Hair style 3

  1. Section the part you want tied up in the bobble, I tend to part it just above my ears.
  2. Using whatever’s easiest, tie up your hair.
  3. Loosen off the bobble, by wiggling your hair about. If it’s easier to do so, put your fingers underneath your hair at the front and pull up slightly.
  4. Pull down any cute baby hairs around your face for a more relaxed, casual look.

This is my go-to hair style for most days. It’s simple and easy to do but also very quick, minimising the time my arms are spent in the air.

Half bun, half down. 

Hair style 1

This is fairly similar to the ‘half down, half up’ as you can see.

  1. Section the part you want tied up in a small bun, I tend to part it just above my ears like before.
  2. Go to tie your hair (the bit you parted) up. This time, don’t pull your hair all the way through. Depending on how big you want the bun depends on how much hair you pull through.
  3. Loosen the bobble if preferred.
  4. Again, pull down any baby hairs or strands around your face.

If you prefer to do so, try different sorts of buns. I do mine this way because it takes less time, meaning its less painful. However if you can manage, try swirling your hair around itself and then tie it at the base.

Twisted sides, half up, half down.

hairstyle 4

I switched over to my mum’s beautiful hair as I cant do this hairstyle on myself with a shaved side.

  1. On each side, find a chunk of hair above you ear. Thickness of your hair chunks is all down to personal preference.
  2. Begin twisting the hair till you get half way down.
  3. Bring both twisted bits of your hair together and join them with whatever you feel is easiest and least time consuming. You can use a clip or a bobble.
  4. Pull out any extra hairs around your face to soften the look if desired so.

Sticking to the same level of easiness, but adding a cute spin to a simple hairstyle.

Messy side plait.

hairstyle 5

Something a little different, but maybe even easier. I’m using my mums hair again as my hair isn’t long enough for this cute hairstyle.

  1. Bring all your hair to the preferred side, make sure its brushed and smooth.
  2. Start plaiting wherever you desire. You could start right behind the ear or leave some baggy hair and start slightly further down.
  3. Finish off with a hair bobble.
  4. Loosen your plait by pulling at the hair. You can also put your fingers in-between the braid and pull outwards.
  5. Pull some baby hairs down from your face to add to the casual look.

I don’t do this style personally now I have a lot of hair chopped off, however I think this one is a great one to do. Your arms aren’t up in the air, so the extra time spent on your hair isn’t painful. You can also switch and experiment with different types of plaits.
 

 

 

 

 

 

 

 

 

 

 

 

 

Top 10 binge worthy Netflix shows

 

So you’re stuck in bed with a flare and you find yourself with nothing do, so you begin to scroll through Netflix. You start with the categories and then just end up casually scrolling through the endless lists of suggested this and suggested that. Too tired to spend hours looking for a good show? You’re in the right place.

I am what they call a Professional when it comes to watching of the Netflix and I am here to provide you with extra special Netflixing advice. Here’s my top ten favourite Netflix shows you could give a go!

(Not in order of awesomeness)

1.Sons of Anarchy 

If you happen to be into a little gore, some crime and mystery and a whole lot of family biker drama then this show is perfect for you! With a healthy amount of binge worthy episodes, I spent a heck of a lot of time shoving as many SOA episodes as possible into one day. Not entirely healthy but I was hooked from the very first episode, what can I say?

sons of anarchy 4

In North California, young Jax Teller and his motorcycle club try to protect their hometown from drug dealers and rapacious developers while running guns them selves.

2. Peaky Blinders

Setting the scene in the 1919’s, this drama follows a ruthless Birmingham gang by the name of ‘Peaky Blinder’s’ who thrive in the aftermath of the great war when dealing with underworld gambling, weapons trade and drugs.

One of my all time favourites, taking a step out of the classic vampires and werewolf’s scenario. This show doesn’t have many episodes in each season, however the actually length of each episode is longer than the average shows anyway. Again, this was a series I couldn’t stop watching until I had completely finished. With plenty of family drama, a view sad moments and a whole lots of booze, drugs and guns, I promise this is one to watch.

peaky-master1050

3. Stranger Things

If you haven’t already watched this then you’re seriously missing out. Taking the internet by storm, a boy vanishes without trace and cannot be found. Those who know him, 3 newbie teenagers (if that) set out to find him, accidently uncovering top government secrets and supernatural forces along the way.

Full of scare jumps, humour and even a little bit of romance, Stranger Things is my all time favourite show, like ever. With the second season released a matter of weeks ago, it’s the perfect time to become a obsessed fan too. You think I’m kidding when I say obsessed? I’m not. I’m really not.

Stranger_Things

4. Heartland 

If you’re too fatigued to really concentrate or you don’t want to spend your resting time worrying about the next jump scare, Heartland is perfect for you. Oh, and a fan of horses too.

Featuring a young girl with a gift for horses, you follow Amy through a good 10 seasons of her life. Focusing on rescuing horses in favour of her deceased mother, light hearted humour, a little bit of drama and a whole lot of L-O-V-E is what this show is all about.

Heartland_680x325-thumb-620xauto-230702

Being a huge fan of the Canadian produced show, I have rewatched this series about 4 times. When I’m not feeling great, I can count on this feel good show to entertain me and make me smile. This is right at the top of my favourite shows list.

5. Bates Motel

One of the most interesting and gripping shows I have ever watched, Bates Motel shows you the twisted unravelling of Norman Bates mind. This show doesn’t require too much concentration, however it is  extremely intriguing and I guarantee you wont be able to peel your eyes of the screen.

Filled with murder, insanity and a sprinkle of love, Bates Motel is certainly a binge worthy show. Oh, and it also spreads some well deserved awareness for the Cystic Fibrosis warriors among the chronic illness community. Bates Motel is a must.

bates-motel-final-season

6. Reign

Turning to a completely different genre, Reign is a brilliant TV show educating and entertaining you on the complex life of Mary Queen of Scots. If you’re not a history geek like myself, then the messy love scenes and the tragic love stories should be enough to excite you. If that doesn’t do it, then I’m pleased to announce that the gory scenes, intense plots and gripping story lines should. A real good series to curl up in a blanket to watch.

reign

7. Prison Break

Another exciting and binge worthy show, genius and little brother Michael plans to break out his brother from one of America’s most secure prisons in hope of saving him from the death penalty.  Exciting every step of the way, Prison Break is a easy show to watch while not being bored or over loaded with information. How far is Michael willing to go for his guilty/ not guilty crime driven brother?

prison-break_0010.jpg

8. The Vampire Diaries/ The Originals 

After all, I am a fantasy struck teenage girl. TVD follows the Salvatore 200 year old brothers, Stefan and Damon. In hope of saving himself, Stephen falls in love with a human (the brothers being the vampires). As each season passes a part of their life, friends change, problems occur, love happens and mysterious creatures are found.

A brilliant show for the romantic and fantasy driven, I recommend this show 100%. Filled with excitement and lots of gore too, it’s the ideal show to watch while trying to save some energy. I promise it’s nothing like Twilight.

The Originals is a follow on series of some side characters known as the Originals and how their story began. Again, I really do recommend this show as it’s just as good as TVD. Filled with sibling drama and lots of gore, The Originals is yet another no brainer.

The-Vampire-Diaries-Season-2-Promo-Poster-the-vampire-diaries-12468822-1650-1275

9. Teenwolf

Teenwolf is ideal if you’re a fantasy fan and loves a bit of horror. Following the life of recently turned Scott and his best friend Stiles, the two and the rest of the gang defend their home town and the people they love. There is nothing cheesy about this show, in actual fact a lot of the content is quite scary and shocking to watch. 110% worth the time to sit down and watch; one of my all time favourite TV series. teen-wolf-tyler-hoechlin

10. Falling Skies

My mum actually recommend this show to me after a bad flare up and I don’t regret a single minute of time spent watching it. After a master race take over earth, Tom and the survivors must deal with the death of their loved ones, and fight in their honour to regain the home they once had. Filled with action, gore, death and romance, this show made it on my list for the exciting and gripping plot that twists and turns all the way through the series. If you haven’t already, you must give this show a watch!

Falling-Skies-Season-5-Poster

CBD Brothers Review; a healing hand

So me being me, I had to go and get a load of illnesses typical pain killers don’t work on. Yep, I just had to be difficult.

As mentioned in many of my posts, I was diagnosed with M.E at just 13. If you’re unfamiliar with the medical condition M.E, it’s a chronic illness that will more than likely last for life. The two main factors of M.E, although there are many, is pain and fatigue; both of which completely wipe you out every single day in some form or another.

Pain has always been an issue for me, as I’ve gotten older my pain levels have increased, sometimes slightly and sometimes drastically. In therapy or specialist appointments, we have this brilliant little thing called a pain scale. This pain scale isn’t designed for people with zero conditions that live a fully functioning life, but for the fighters that experience pain on hourly basis. 1 is mild and its hardly there. 10 is the most excruciating pain you have ever felt, the pain that makes you question your sanity.

On most days, my pain ranges from a 6 to a 8; it’s there and I know it is and it’s really bugging me but life’s life and you just have to put up with it. Fun. On my worst days I’ve wanted to physically rip my own hair out of my skull, also of which, is fun.

Over the years, I have tried a fair few methods of easing pain. Some being natural remedies like creams, some being baths and heat, some being medication. Well, let’s just say if my pains a 9 I don’t give a crap about the natural remedies and I want some damn painkillers.

I have tried different strengths of Co-Codamol, and neurofen and Co-Codamol at the same time. Then a few others thrown on top because by this point I just don’t care, and yet none have seemed to work. Heat is a good way of taking the edge of though.

Recently I have tried CBD tablets, produced and sold by CBD Brothers.

‘The original alternative’

CBD brothers use whole plant cannabis and hemp extracts imported from Europe to produce their range of products, all of which contain high levels of Cannibidiol as well as other vital cannabinoids. Everything is completely safe and organic, with no side effects what so ever. The doses come in different strengths depending on pain levels, all at which are priced very reasonably considering the difference they have made in my life.

CBD
CBD Tablets

I haven’t been on these tablets for what most people would consider a long time, however I have had several months to experiment with different strengths and see how my pain levels have been effected.

CBD 1
Quick example of one of the strengths for the capsules

So far my experience with these tablets has been nothing but positive, so I am really pleased with how well they have worked considering nothing worked before. Taking the pills regularly has meant my overall daily pain has lowered and I haven’t been so dependant on painkillers like Co-Codamol which I don’t like taking for personal reasons.

Daily pain alone being lowered enough to notice has certainly been amazing, however my migraines have also been helped with the tablets; although not fully taken away by any means.

For headaches and migraines, you can easily purchase the CBD Brothers balm which I tend to use when I have a headache. The palm is also helpful for muscle pain, although it hasn’t been as effective as the tablets in that particular area for me personally.

CBD palm

My sleep has also bettered from taking the tablets late at night, which overall is helping my energy levels as much as a good nights sleep can actually help someone with a chronic fatigue based illness. I suffer from bad dreams regularly, sometimes up to 4 times a night so waking up is part of my nightly not so wanted routine. Since taking a dose at night, my dreams haven’t been so vivid and sometimes I am able to sleep through the night without waking up once.

There’s a huge stigma around medical marijuana, even in the forms you don’t smoke it with no side effects what so ever. However, it’s helping me hugely and I will carry on taking different strength tablets while also trying their other products in hope of bettering my every day pain further.

To my parents, fighting along side me.

To my parents,

I will never be able to thank you both enough for the life you have given me despite my illnesses, the hours and energy spent on comforting me, and the countless hours, days, weeks, months and years you have both spent fighting along side me through thick and thin.

A simple thank you will never do, and it will never be enough for the endless love, support and patience you have shown me continually in many a time I was bewildered and frightened. However, thank you is a start.

Nothing goes unnoticed, nor will it ever. Hours after hours spent on teary nights, doctor appointments, private specialists, research, medications, planning out my days so I can focus more and put my mind at rest, staying by my side through the dizzy spells, the flare ups, the nausea, power naps, panic attacks and spending your days with me so I don’t get lonely. I am so thankful for all that you do, for doing the unthinkable and for being the best parents a kid could ask for.

I think many people seem to forget that although it was my first time dealing with M.E or a chronic illness, it was your first time too. I needed you to be brave and tell me everything was okay, despite having a million and one worries worm around inside your heads. I can only imagine how hard that must of been to put your own worries a side, and hold my hand through everything that didn’t make sense to you, let alone me.

I know every struggle I face affects you just as much as it does me, every inch of pain and all the messy, unpleasant experiences my illnesses brings along with it, affects you too. I often think about how I would be if the rolls were reversed, and if I had to sit by and watch you two suffer as I felt powerless, longing to help you in some way. Well, I don’t think I’d be very good at it, to say the least. You amaze me.

Every sleepless night, every pain ridden moment, every time I have felt abandoned, you have been there to scoop me up, place me in your arms and talk it through. Every time I have wanted to quit and give in, you have taught me that fighting with every inch of my body is worth the happy, incredible moments I will experience in life, no matter how small. Amongst things, you have taught me to be kind and considerate because you never know what happens behind closed doors, and despite how I may feel from time to time, I will never be alone as I will always have you, my best friends. You have taught me to be brave.

Thank you for talking me through the panic attacks, pushing me to strive for my goals, teaching me to never give in and for holding my hand every step of the way. Thank you for sticking up for me, telling the docs where to shove it and for making sure I know I’m loved. Thank you for making me laugh too, joking about this crappy situation and not the ideal one I had hoped for really makes everything a lot lighter, being deep and depressed does nothing for me. Thanks for making me laugh through the pain and tears, for taking the piss out of me and for treating me no different to any normal kid, with a few exceptions of course. Thank you for showing me my fighting spirit.

I know I stress you both out, I know you don’t sleep and I know you worry more than you should. I just hope you know, I try every single day to show you how thankful I am to have the parents that I have. You guys are my best friends, to some people that might be weird but you are. However, I know that parents like you aren’t common and I’ll be damned if you aren’t made extremely aware of this.

You have shown me the true meaning of courage, passion, love, strength and bravery and that alone would have been the greatest thing to ever happen to me. You are the reason behind every fight, past, present and future. I love you. As long as I am fighting, I know you will be too, right by my side, hand in hand, smile on your face.

Thank you for loving and supporting me, for never giving up on me, for making me laugh till my stomach hurts and showing me the fighter within me.

5 things you learn being chronically ill

Like the majority of people out there, no one tends to appreciate what they have till it’s gone. A common mistake yet still a mistake at that.

When your worst fear breaches the surface of reality, our point of views are drastically changed of how we see the world and the people inhabiting it. Yes, I’m talking health.

Just like many, until I had everything stripped away from me with one mighty snap of life’s jaw, I took my normally functioning body for granted. Granted I was 9, but none the less. Now, being ill obviously has a lot of down falls to it but it does have it’s ups too. Occasionally, maybe. Sometimes.

Taking a step back from life and watching it from the side lines really improves your ability to see what’s going on, how people react to your situation and how they typically treat the average ill person. So here are a view things you learn being chronically ill.

1. People are genuially quite rude to the disabled and ill percentage of the population.

I have noticed, as has my family, being in a wheelchair pretty much makes you invisible to the normies. Now you’re properly thinking that doesn’t make any sense what so ever, wheelchairs are unmissable right? Wrong.

Using my wheelchair for day outs, or distances I can’t walk means I can do a whole lot of observing from down below. Personally, it’s hard enough being in a wheelchair at 17 being pushed by my 13 year old brother without adding to the chaos it brings. I am constantly cut up, pushed infront of, elbowed, walked over, and hit round the head with some stupid ladies handbags. I’m not sure why and how exactly but I’m very much convinced I’m invisible as soon as my bum touches the seat. Magic.

2. People are quick to judge.

I’m sure I’m not the first person to complain of such things, but it’s 100% true. I have a blue badge to help aid me and get me though the tough days. Even on a good day, I may need it as I can’t walk to distance intended for healthy people to get wherever I’m going. As I’ve mentioned before, I also use a wheelchair to get around the place. Anybody would think I’ve just slaughtered a new-born baby by the looks I get given. I’ve heard on multiple occasions that I don’t need my wheelchair, I shouldn’t be in a disabled parking spot or I’m simply just too young to be ill. The looks I’m given can be absolutely heart-breaking, making the whole ill and 17 concept even harder to cope with.

3. Friends don’t always stay.

Over the years, specially at the start of the whole diagnosis process, I’ve lost my fair share of friends. I don’t know what it is exactly, but maybe when you become ill you get a free ‘please run away’ sticker slapped on your forehead.  As many stressful periods of a person’s life often does, a chronic illness or if you’re lucky, multiple (insert sarcasm here), filters out the true from the fake. It hurts, but you find out who’s in it till the end and who isn’t. You can call it a curse and a blessing.

4. People are selfish.

As I’ve mentioned previously, for a large portion of my time spent ill, I spent the majority of it watching from the side lines as everyone else continued embracing life and all it’s glory. I can’t say I was any better when I wasn’t in this position but it’s something that is now incredibly obvious. Unless it personally affects their life or them, people don’t tend to care all that much.  I can’t say this is the case for everyone but from personal experience, it’s a large majority. I had no visitors or cards, not even a single text from outside my close family (parents and brother). I was 13, bed bound and persuaded I had met life’s end. Even now 4 years on, I can’t say it’s got much better people wise, I’m still waiting on that text.

I suppose being ill has enhanced my ability to care for others, and to thoroughly understand the loneliness and overwhelming feeling someone gets when facing a stressful ordeal. I can honestly say, hand on heart, I have been there for as many people as possible in the last 4 years as humanly possible and still currently am.

5. People are highly uninformed on the majority of chronic illnesses.

Everyone has heard of cancer and rightly so. However, what about the 50 million other illnesses, disabilities and chronic conditions a percentage of the world’s population face every single day? I have learnt that most people haven’t got a clue what my illnesses are, what the do or even that they are a thing. There is little to no funding for research and only a few specialists covering my conditions in the UK. It is unbelievable how uninformed  and oblivious the general population is. Yet again, I can’t say much as I hadn’t got a clue till it smacked me in the face. I think this is why it is so important to spread awareness not just among the chronic illness community but outside of it too. Friends, family, the weird guy wandering the streets. Anyone.

It’s all part of my experience learning to dance in the rain.

 

 

Identity Thief; losing yourself to a chronic illness

When living with a chronic illness, in many ways our identities feel taken from us. Whether you live with one illness, or twenty, you are mildly or severely affected, a bit of who we are is striped from us and replaced with the longing ache of who were once were, the person we wish we were.

No matter how much we cling onto the person we were prior to the dreadful diagnosis, sometimes when we look at ourselves in the mirror, we won’t always recognise the person before us. We change in so many ways, although not all bad as being ill can develop us in ways we don’t even realise.

Theft of identity while living with any illness is often predictable, one of the biggest aspects of being newly diagnosed. We’ve all been there, yet not all of us regain the control we need, the control we want.

It is truly devastating to be suddenly restricted by the name of an illness you can’t even pronounce and have no say on the changes being made to your lifestyle and you as a person. We learn to change how we do things, our hobbies and the things we once truly loved. Living in the word of doctors appointments and flare ups mean we have to make tough decisions and these decisions can be just as troublesome to make as anything else.

I’ve had to stop doing so much: simple things from netball games, to walking with my friends into town without worrying about the journey back. Things closer to my heart such as horse riding and playing on the trampoline with my brother. Losing everything at once overwhelmed me with nothing but confusion and the fear of losing myself. I know I won’t ever be that person again, I will never live without pain nor will I ever be illness free. That’s the harsh reality.

I think the fear is being seen as your illness rather than the person the illness has swallowed. I used to and still do fear I am seen as the girl in the wheelchair, rather the girl with the great sense of humour. The girl who was too young to be ill, rather than the girl who loved to paint. I fear I am seen as Myalgic Encephalomyelitis rather than Maddie. Seen as POTS and EDS rather than who I really am. Not only did I fear that others would see nothing but the illness, I felt like I had lost a great part of who I was.

I think the trick is to understand that you can be both the new and the old you. Let the girl with the chronic illness stand out as much as the old did and don’t for one second let it define who you really are. I think we should embrace both the old and the new, after all an illness shouldn’t stop us from being who we are at heart but we should allow it to build our character. It took me a while to understand that although I had changed drastically, I am still myself. I have learnt to appreciate and accept that although I am not 100% who I was, I am now more capable of understanding others needs, I love harder than ever and I appreciate every single thing I have and am able to do. Yet I am still as interested in music, art, I still love animals and reading and I’m still as quirky, sarcastic and smart as I have ever been.

I am not the sick girl. I am the happy, nerdy, quirky, horse loving, arty mess of a girl who just happens to be sick.

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.