I’m no Drama Queen

Let’s think about this logically, shall we? If someone suffered the most horrific pain every single day WHILE carrying on with their life like their entire innards aren’t on fire, we would consider them incredibly brave, strong and maybe even inspirational to a point. Correct?

So here’s my question, why do we get treated so badly?

Pain is a wonderful thing, every chronic illness fighter will have you know. It forces out reluctant tears, shreds apart your days and strips away your energy and movement until the only way you can successfully move is well, quite frankly, by looking like you’re an 90 year old with a hunch back and a bitter taste in your mouth.

Whether it be from Fibromyalgia, Arthritis (shout out to my mama, hi), Complex Regional Pain Syndrome, Trigeminal Neuralgia, Endometriosis, Elhers Danlos Syndrome, Myalgic Encephalomyelitis, Chronic Pain Syndrome, Crohns, or any other illness that causes pain, we all deal with the pain caused in our own way. Some take painkillers, neurological or anti-inflammatory. Others prefer homeopathic, some meditation, yoga, creams, oils, supports, mobility aids, and maybe even CBD. We all have our different ways with coping with the different types of pain in the different areas scattered across our bodies.

As spoonies, we can all relate and show compassion and empathy for our fellow fighters who battle everyday; after all we know the pain all too well. However, what about everyone else? As I mentioned many, many times before, the general public have a certain way of seeing the disabled. For the most part, invisible disabilities aren’t seen to be anything important. The classic ‘I get tired too yanno’ or the ‘I have a bad back but you don’t see me lounging about the place’ are really very much a clear indicator of the lack of care given.

We’ve all had some sort of experience like this, whether it be from the clueless people we call professionals, family or friends, or strangers judging us solely because we parked in a blue badge spot. What the majority of people tend to not quite grasp is this one simple fact; we’re bloody good at hiding this stuff.

The disabled parking gets to me the most, as I mentioned in my blog post solely for the use of my blue badge. However, a good majority of the time, they’ll stare and that’s it. Unless you’re really unlucky and get some know it all, OBVOUISLY well educated on the topic of chronic illness, can identify every illness from a to z in two minutes flat medical professional with a degree in knowing everything, come up to you and ask why you’re there, they just tend to stare. Now what’s probably harder to swallow is the comments you get from friends and family, or even people you’ve just met, making light of your situation and claiming to be dealing with the exact same thing and yet they still do all this crazy stuff. Better yet, the classic ‘drama queen’ or ‘attention seeker’.

I’ll let you non disabled, healthy people in on a little secret of ours… it’s called hiding it. Every day is a fight for us. Every day I wake up feeling horrible and every night I go to bed hoping I’ll feel a little better tomorrow. The thing is, you can’t escape any of it and that’s what is so utterly heart-breaking. Every normal activity, happy moment or simple task is always being done with some sort of fatigue, pain or symptom.

It takes a lot to speak out about how we’re feeling, normally a nasty consequence of speaking out before and the reactions we received. We don’t talk about it for sympathy, pity or anything remotely like that. Personally, I have to talk about it otherwise I don’t know how long it’ll be until I can’t deal with it by myself anymore and I burst into flames or something. Pain isn’t just physically exhausting. The consequences of being a long term pain sufferer means it takes it’s toll mentally and emotionally. It’s energy draining and you’re left anxious and fed up wondering when you’ll get your next good day. Sometimes I sit and wonder how much more pain I can handle before I crack like an egg.

I guess that’s why it’s so hard to hear someone insult your pain intolerance or bravery. Every activity, second of the day and moment shared brings with it some sort of pain, but unless I describe to you the horrific feeling going on inside me constantly, which bits are on fire and which bits feel like they’re being chizzled away at with a pick and hammer, the most you’re going to know is I have a bad back. What’s even worse is on the truly crippling, cry while you brush your teeth days, we’re still expected to work or clean or cook or to pass you something and it’s truly that hardest thing at the very moment in time.

Being called an attention seeker or comparing my body to your once in a blue moon headache is rather insulting. Do you know why? Well, because this pain pushes people to their very limits, it forces them to question their existence and leaves them hopeless of a better future.  These people still get up every day with a million things on their minds and a million unanswered questions in their stomachs and STILL make life happen. If you call me a drama queen for moaning I’m hurting, feel free to take a walk in my shoes. I guarantee you won’t like the walk.

This is often a bit of a sensitive subject but it’s something that needs to addressed. We shouldn’t feel ashamed for talking about how hard it is, because it is hard and that’s not something to be embarrassed about. When we don’t talk about it, we’re expected to get on with it and sometimes, that’s just too much. Without constantly depressing yourself and making it a topic of misery every 5 seconds, it shouldn’t be a taboo subject but something any one can talk about openly. It’s not something to be embarrassed about and it certainly doesn’t make any of us any weaker. It probably takes more courage to be vulnerable and allow yourself to talk and cry, then it does to ignore it and avoid it. Be kind to each other, pain comes in many shapes and forms.

 

 

Millions Missing

You’ve heard of Millions Missing right?

Millions Missing is exactly what it sounds like. Millions of people are missing from the world: children too young to understand, teenagers, mothers, sisters, fathers and friends – yet no one knew they were right there the entire time, hidden behind closed curtains. The campaign is a way for those who have no voice to be seen. The ones who were sentenced to a life of limitations and unreachable dreams and cannot show the world their true raw state; the state that is M.E.

Shoes are placed to represent the absent or ‘missing’ person, currently ill with M.E. The shoes are there to open the eyes of the healthy, that there is real, living people behind the diagnosis and the current state of treatment and awareness is NOT good enough. The ones who can attend, well they stand, sit, lie, shout, cry and scream, hoping to be heard – to be seen.

May of 2018 was the first time I attended Millions Missing, after being inspired from the documentary film ‘Unrest’. My parents and I attended one held in Birmingham the day before the normal date, as more people flooded past the cathedral on a Friday than a Saturday. My parents placed me in the middle of the walk way. That way they had to look at me, my wheelchair, my pale complexion and my sign painted ‘missing my teen years’. I had one sign strapped to the back and the other held by myself. With every person that walked past, they studied me up and down, left to right, reading my sign and carrying on.

It was a challenge in itself being in my wheelchair in such a popular place. Dealing with the on going stares I normally try my hardest to ignore was another thing entirely. That day I wasn’t annoyed by the stares as I tried to act like I didn’t see them. Instead I looked them straight in the eye, I looked right back. For the first time ever, I didn’t want to ‘blend in’ so I felt less awkward. Instead I made it my task to be seen: for my family, myself and for the patients who couldn’t attend.

The rest of the campaigners made conversation about the cruel greedy disease M.E is, to the walkers of the day. Others asked for petitions to be signed in order to stop GET and CBT as the only, and may I add complete shit, treatment we’re provided with. Imagine giving someone with Cancer, treatment that not only doesn’t work but also makes the patient worse. Complete and utter madness if you ask me.

Many people walked past. At first it was hard to see so many careless people ignore us without any consideration for what we were fighting for and how horrific it really is. It doesn’t take much to sign a box which could potentially help millions of sufferers in the near future. Does it?

I got three things out of that day. The first being, Uni is possible for me. At long last have I now met 2 people (on the same day) with M.E who successfully attend Uni. The second being what I originally thought,  but only proven further; people don’t bother helping others or supporting others if it doesn’t personally affect their life. It’s harsh but it’s true. And thirdly, I know every single person that walked past and ignored the cause, saw me. That my fellow blog lovers is the best bit yet. Whether they helped or not, smiled or not, signed or not – they saw me and they saw the way I was because of ME. Every person that stared me down took home with them more knowledge and awareness than they came with. That is enough of a reason for me, to campaign and fundraise till my legs drop off and maybe even more. For the ones that walked past with no second thought, you’re even more of a reason to shout from the roof tops.

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Myalgic Encephalomyelitis is cruel, life changing and disabling in every way imaginable. If you can attend or show your support for the disease and the ongoing campaign, please do so. 30 years on and we’re still fighting for decent medical attention. Help us win the fight and join in wherever you can! If you’re a fellow M.E fighter and can attend the next campaign, show your face to the world. You might be the face that changes it all.

Chronic Illness and Blue Badge Struggles

Every wheelchair user, chronic illness fighter and blue badge holder have all endured societies ignorance at one point in their lives. Maybe several times or just the once but however many times it may be, it happens to all of us and its never nice to receive.

Blue badge holders vary hugely, with thousands of different diseases and disabilities being the reason we hold one in the first place – no one person is the same. In todays society, the majority of the public still seem to be just as clueless regarding the nature of chronic illnesses, as ever.

An illness have no preference nor does it care about the colour of your skin, gender, age or religion. It simply does not care about the challenges you already face nor does it care about wealth, height or weight. An illness simply does not care, no opinion is formed and no choosing is done. Any illness, any person, any victim to a deep poisoning within. If any illness can strike any singular person, why is there still a problem with the vast range in people who hold a blue badge?

I’ve had a blue badge since the age of just 13, a mental hurdle in itself dealing with yet another unwanted ‘aid’. I’m 17 now. I’ve been through two blue badge licences, of which both include an up to date, sickly pale teenager. When we think of a blue badge and therefor a disability, I can be fairly certain when I say this – the majority think a blue badge must belong a 90 year old granddad with crippling arthritis, hunched over, shoulders high, dragging his one leg behind him. Disability comes in many forms, that we’re getting better at understanding. The logical bit – disability means possible blue badge? Eh not so much.

Speaking as a chronic illness fighter and a blue badge holder of almost 5 years, who of which happens to be 17, I can tell you wholeheartedly that parking in a disabled spot thoroughly makes me nervous – here’s why. As we pull up to a spot, whether it be at the side of the road that requires a badge or the disabled bit of Tesco’s, I and whoever I’m with is instantly judged for that very decision.

I can’t truthfully say it’s just the abled-bodied majority of the population that are doing the judging; the very community I’m apart of are probably the worst. Thankfully I’ve never received worse than head shakes or glaring as they walk on by. I’m lucky enough to miss the notes under the window wipers or the verbal abuse received by some of the chronic illness fighters among us, none of which is acceptable by any means, whatsoever.

After years of going place to place with my mum as my best friend, the pair of us have seen the head shakes and the evil looks thrown our way and have glared right back. Although it begins to get fairly tiresome and we shouldn’t have to put up with any of it in the first place, I’ve become increasingly nervous about parking in a disabled spot (if need be) by myself. Now I can drive, my blue badge is my saviour. Without it, trips to get a sandwich to bring home after college would be more than painful on the bad days that often make an appearance.

I’m not sure whether the fact I’m 17 is the issue, or maybe because I’m not always in my wheelchair. Maybe its because I can drive, I just don’t know. What I’ve noticed is the blue badge holders themselves, typically the elderly majority, see themselves fit to make something I benefit from, embarrassing. As I leave the car after setting the badge on my dashboard, I walk away knowing the people sitting in the cars are watching as they always do, and I wonder to myself. What are they thinking?

I have never once thought necessary to prove my health is what I know it is: not healthy. As I stroll past, I wonder if they watch the way I walk, the way I carry myself and the speed I do it at. I wonder what they’re accusing me of in their heads as I walk past their horribly parked cars, heading for the entrance. These thoughts aren’t built of nothing, these thoughts and worries are built from the stories we share among each other and the vile looks of disapproval and theft from the elderly and disabled.

I read an article actually related to an illness close to me. The lady featured in the news had fibromyalgia, and although she was in the wrong for what was told in the article, the comment section disgusted me. ‘If she can drive, she’s not disabled’ and ‘fibromyalgia – a way of cheating the system’, comments alike. Supported by hundreds of people, reading these comments only further fed my thoughts about the whole situation.

I can drive yes, on the bad days I don’t. To prevent the bad days, I walk as little as possible and even then, sometimes that’s too much. My legs work fine, they’re perfectly functional. Although I experience pain throughout my body, driving 10 minutes to get to town is nothing compared to the pain caused by walking. I’m supported in the car, my back can rest, my shoulders and arms too and my legs move very little in order to drive. Not all disabled people are paralysed, not all disabled people struggle to drive. Ever thought some people hold a CERTIFIED blue badge because their legs are weak, they pass out while walking or they have no balance?

As for my age, I can only assume it’s half the problem. It always is. Chronic illnesses can also be invisible illnesses, meaning my illnesses aren’t going to be painted on my face and no, I don’t carry a sign either. You can’t see the illness and struggle, but its very much there. Did you know I know more young people with chronic illnesses and disabilities than I do old? I may be young but being old isn’t a necessary requirement to hold a blue badge you know.

I think the problem lies in the disabled community itself. If we can’t show each other compassion and support, how can we as a community expect the abled to do those very things for us? Instead of making me feel uncomfortable for pulling up in a spot being the age I am and the way I am, think about what could possibly lie behind the smile and the steady walk. Instead of making me nervous as I walk past you, as you stand huddled outside Aldi, looking and whispering, get on with your life and leave me be. I think I can speak for the majority when I say we have enough to deal with, without the embarrassment of walking past a clearly old and disabled elderly and feeling targeted for parking in the same spot.

Just in case you’re incredibly uneducated or something alike, blue badges aren’t easy to get hold of. If you think they hand them out to teenagers, you need to rethink your way of thinking itself. It’s not easy and I deserve help for my many illnesses just as much as any other disabled being.

Education & Chronic Illness

Earlier today, I was sat in the window of a small tea shop in our local town, sipping a mixture of melted cream and hot chocolate with my mum. Tomorrow is a very important day, not only for myself and my family but others exactly like me. We began discussing the topic, and as predicted I got irritated and angry. Tomorrow we argue the importance of my education and the adjustments needed to achieve what I should already have. In short terms, I have to prove I’m sick enough to be helped.

We all watch films about lifestyle and love, drama, action and even illness and death. However our society has been fed a trail of lies, shielded from the harsh truth that is very much my reality. I was led to believe being sick only ever went two ways –  you recovered, or you died. Never surfaced the idea of either, health nor death. Instead, in its place a life long, debilitating illness that neither threatens your life or allows you to live it. Ladies and gents – chronic illness.

Being ill has it’s handful, wait – bucket… no, digger tonne of problems as you can imagine. Feeling like you’ve been hit by a bus, dragged for several miles and then left to die is more or less expected. What I never expected with the many diagnosis’s given, was the most simple of human rights to be questioned and threatened. Asides from my family and my health, education is my absolute priority. Not only am I faced with something so much more complicated than ill or not, they just have to go and throw yet another struggle and another tiresome battle into the mix.

Tomorrow my mum and I have to enter a room and argue my human rights to people that see me as nothing less than money spent, all because I wasn’t originally seen as fit for help. Battling for an education with any illness is beyond hard, but knowing I’m not the right sort of ill or I’m not ill enough for their standards is a total different ball game. I don’t have any learning difficulties yet learning is still very much difficult. My physical situation impacts on my learning. I can’t think straight or speak properly, my thoughts become jumbled and lost among the words on the paper. The searing pain up my back, legs, arms and neck make sitting and writing near enough a work out. The headaches become unbearable; my vision blurs and my head burns. All of which is on a standard day, but hey, I’m not sick enough for any extra help right?

First of all its incredibly insulting to think my pain and suffering for the last 4 years is invalid and through it all, I still can’t get help for something that was never my fault. The educational system is so narrow minded when it comes to health and pupils needs, in my experience anyway. There’s this little box where they can help you if you fit perfectly, all four corners. If you don’t fit, you don’t get the help regardless of whether you’re desperate or not. It’s a joke. Help for students should be offered straight away regardless of the reason behind it, they shouldn’t be adding to the ongoing fight many chronic illness fighters and their families experience.

Yet again chronic illness, in my opinion, is being pushed aside and over looked, not taken seriously for all its seriousness. The world encourages diversity and difference yet refuse to help the disabled unless its battered out of thwm; like a dog with a bone. Every debilitating aspect of the poison, yet it’s not something worth helping a 17 year old out with. I’m not asking for anything to be given, I’m not asking for the impossible; I’m asking for the chance to better my knowledge and understanding and learn like every other person can. I’m asking for the chance to give myself the future I so desperately want, yet I was denied help and now we’re here.

My point is that being ill is hard enough, chronic or not, and we should all be helping each other to make anyone’s life just that little bit easier, even if its only a little, tiny bit. Teenage kids shouldn’t have to prove themselves worthy of help with their education, just like adults in the world of jobs and employment shouldn’t have to prove themselves in need of necessary help within their work. Fingers cross, tomorrow goes well.

 

Sneak peak of December’s coming posts

This post isn’t necessarily an important nor long one, however I just wanted to let you know what will be happening this month leading up till Christmas.

To spice things up a little, this month I’ll be posting with Christmas in mind. I love Christmas and in all honesty, I don’t know anyone that doesn’t. To further my holiday cheer, here’s what to expect from me in the coming month.

  • CHRISTMAS WISH LIST
  • FAVOURITE CHRISTMAS FILMS
  • FAVOURITE CHRISTMAS SONGS
  • BEST BOOKS TO COSY DOWN TO
  • HOW TO SLEEP ON CHRISTMAS EVE
  • HOLIDAY PLAYLIST
  • MUM’S BEST MINCEPIE
  • DIY CHRISTMAS DECOR
  • THE MOST IMPORTANT THING ABOUT CHRISTMAS
  • FAMILY CHRISTMAS TRADITIONS
  • MY FAVOURITE PART OF CHRISTMAS

Keep in mind, not all these ideas will be covered and certainly not in that order. However, I’m looking forward to covering some of these topics for sure. I hope everyone is having a wonderful December so far, I sure am.

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.

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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.

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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 also 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.