I’m no Drama Queen

| Maddie

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

| Maddie

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

| Maddie

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

| Maddie

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.

 

‘Positive thoughts’

| Maddie

Speaking on behalf of most chronic illness sufferers, when we get ‘positivity’ rammed down our throats, it’s hard to nod and agree. Specially when the person doing the ramming is persuaded positivity and good vibes will cure us of all diseases, and healthy we will be. I have mixed feelings about this.

I can whole heartedly admit I am not the worlds most positive person, but I do try and see the good in fairly crappy situations, situations that make my judgement and many others, cloudy.

Becoming ill was a lesson in many ways as well as the curse we all know it to be. I’ve learnt many things including how abled beings treat the disabled and chronically ill.  When I first fell ill, no body really knew what was going on with me, including myself. What I learnt along the way, progressively getting worse, hitting my worst and then fighting my way along this chronic illness minefield, is that healthy people sometimes give the worst advice ever.

One thing that used to really grate on me and pluck at my nerves was a very common ‘think positively’ or ‘be positive or you’ll never get better’. 13 year old me did not want to hear it. In fact the last thing I wanted to do was think positively when gaining the ability to walk further than my house was completely unknown to me. That’s when the so called depression hit me and I spent my nights awake, and my days mourning what I’d lost. As difficult as that time period in my life was, I think I needed to go through that to have the motivation and drive to succeed and kick ass in all aspects of my life for the future.

To an extent, healthy people don’t appreciate what they have, or so it seems. ‘Think positively’ isn’t a good way to approach a newly diagnosed teenager, with no clue about anything going on, whatsoever. Healthy people, I ask you this; would you tell someone who just lost someone to think positively? I’m sure you wouldn’t. No, we haven’t lost our family and friends, but we’ve lost a huge part of ourselves. Often the part we feel makes us, us. Just like a failed marriage or losing a loved one, we need time to grieve.

Even when we have finished grieving (if), and we’re ready to move on or at least accept this life, pleased don’t tell me I’ll be cured with mind power alone. It doesn’t work that way. Quite frankly, I find it rather insulting to assume I’m not trying hard enough in every aspect possible, to gain back my once lifestyle. Again for the people at the back, positive thinking alone won’t ‘cure’ me, so enough. Sincerely, the chronic illness community.

However, and it’s a big however, the correct mind set is a crucial part of living with this an illness and getting by. I understand that this life is unimaginably hard, but sometimes I see people who are some what better than me, or sometimes a little worse, give up completely and have everyone do everything for them. Positive thinking is something I had to ‘learn’ and I can honestly say, I appreciate how my illnesses have sculptured me as a person. I feel I now appreciate the things I do have rather than falling into a slump of envy for what I don’t have.

I think if you have a can’t do attitude, you won’t achieve anything or make any progress. With a more positive and brighter outlook, I have become more driven and passionate about everything I want, no matter how hard the journey. I’m no better health wise, but sulking and dragging my arse around the house did nothing but make me feel worse. I have to fight my body constantly so why would I add to the feeling of failure? I quickly decided I needed to get my arse into gear and set myself realistic goals. Life flies by, and I for one, refuse to miss the view.

To let an illness control you more than it has to, in my eyes is silly. I cry and get down don’t get me wrong, but I will not give up and I won’t be someone who’s only set purpose in life is to feel better off other people’s pity. No body can hand me what I want, I have to want it bad enough to get it myself. I’m not saying I wake up every day with the sun shinning out my arse and a big rainbow painted on my forehead, teaching the ways of happiness and positivity. What I’m saying is to make a crappy situation a little less crappy, fight with all your strength and appreciate the many wonderful things you do have. Mine is my family. Let that be your motivation, rather than limit yourself to match your situation.

To abled bodied people, please think before you give your expertise advice to a chronic illness suffer, newly diagnosed or long term. To the chronically ill, let the good things in your life be the fuel that feeds your motivation. Proof those who told you couldn’t, wrong.

 

Goodbye 2017, Hello 2018

| Maddie

Once again, nothing really went as planned. This year, 2017, I have laughed, cried and loved my family through everything. Now, 2017 is coming to an end, it’s time to recap on the year I’ve had.

2017 started off with a bang as the fire works lit the sky and showered down with dancing colours, as usual. So, what’s happened this year?

In no particular order, you’re about to read.

This year hasn’t been a ‘bad’ year, nor a ‘good’ year. It’s been another year of making incredible memories with my family and loved ones while learning everyday how to manage the crazy thing we call life. I’ve cried, we all have, but boy have we laughed too. Laughter is the best medicine in my very professional, wise and teenage opinion.

This year we spent two weeks in Kos, a beautiful island off Greece, oozing with culture and Greek traditions. We toured the island in a rented car and feared for our lives the majority of the time we were on the road, while looking at the beautiful landscapes and rich culture that thrived through the island. We drove up the biggest hill we could find and took mountains of photographs capturing our time there. I also had my feet sucked by little fish, weird but oddly soothing.

The holiday was amazing, half of it spent exploring, the other lounging by the pool and consuming as much alcohol as possible. I loved every moment and would suffer the flight there and back in a heart beat to go again.

This year, I finished my Media course and left that well behind me and all the mess it caused. I greeted a fresh year of college with open arms and now I’m doing my Maths and English GCSE’s in hope of doing my English A-levels next year. Unfortunate circumstances meant I missed them at school, so I’m doing them for the very first time at College (GCSEs).

I started this blog too, in hope of spreading awareness but also in hope of developing and improving my English skills for my desired future job as an Author or Writer. I have messed about with this site constantly, incorporated social media into it, and shared my life as a chronic illness fighter and a teenager, in hope of inspiring others or at least informing the healthy community around me on my and others illnesses.

I started working for my Dad this year, designing and piecing together a leaflet for his business. I later did some work for my Mum too and her charity, both of which I’ll be carrying on after the new year. To finally have a job and an income, and to earn some money and independence has been great, truly. I bought my family Christmas presents with my own money which I haven’t been able to do in the past, as having a job and having the worlds most unreliable body don’t work well together.

I turned 17 and was gifted a brand new Toyota Aygo was the best thing, past imagination. I love it soooooo much, Drogo/n (my car’s name) is cute, small and warms up within minutes. I have a wonderful family and I’m incredibly grateful for everything. I also started driving lessons and my driving test is around January, February time! I honestly cannot wait. Again, the independence driving will bring me is amazing but learning to drive with different members of my family has been one of my year’s highlights.

Going a little off topic from driving, I also set up a Facebook business page called ‘Mad Designs’ this year, in which I now have my first client. I am currently designing a logo which will be used on her shirts, cars, hats and business cards, representing her amazing company.

We are now further along with my illnesses and professional care thanks to one of the best Dr’s in the country and my wonderful parents. Everything is looking good with his care plan so hopefully this will be the start of a limited POTS symptom free year!

There have truly been so many wonderful memories this year, with every laugh and smile mentally captured along the way. Not everything about this year has been smile worthy, however. We lost a wonderful friend and horsey of ours, Bob. I knew him my entire life and my family and I carried on caring for him when his amazing owner and our beloved, and truly wonderful friend died 4, nearly 5 years ago. I hope you’re both happy to be seeing each other again, although we miss you tremendously.

Earlier this year I was told I have Alopecia Areata after a clump of my hair on top of my fell out and continued to spread and grow over the period of 5 months. Not a brilliant time for me, or us, and having yet another thing go wrong was difficult to face. Half the time I feel like I look ill and sickly pale but the huge egg shaped patch of non existent hair perched on top of my head only added to the original feeling.

I flared badly earlier this year, and still haven’t recovered from it so this again has been something I have had to deal with daily but I’m learning with every good and bad day.

My mum is working hard, and looking after everyone as usual, the glue that holds us all together, while dealing with her hands remarkably well, even if it doesn’t feel like that to her. Dad’s company is running well, I hope he’s pleased with it and his work. He also made mum the best Christmas present ever, so he now owns the best present giver title this year. My brother, Lewis, has settled into his new high school really well and has made a tonne of new friends. His drumming is getting better and better too, I’m hoping he sticks to it, he’s a natural and everyone knows it.

Although not everything was a positive experience, I learned yet again, family is everything and family can get you through anything. I’ve lost friends and made friends, but through all the good and bad of this year, my family have been there to share memories with every single day. I wasn’t expecting a smooth ride this year, and smooth it hasn’t been, but I’m ready for 2018 and the life long living memories I’ll create with my loved ones, family,  friends (the old and the new) and whatever else we’ll explore and experience together, this year, the next and for the many to come. Happy New Year!

 

 

 

To be strong, means knowing when to be weak.

| Maddie

‘Sometimes, apart of being strong means knowing when to be weak’.

This is something I tend to say to myself a lot, and occasionally to others. This is my go to quote on the days the tears don’t stop pouring, and the frustration I’ve stored for however long it may be, wants to break free and scream.

I used to get angry. I still do as a matter of fact. Frustration builds, brick by brick till it has you round the throat. I used to get angry at the world, at the doctors and at myself. Never did my anger turn violent or harmful, instead it just turned into crystal tears that’d fall to my pillow at night. But then I felt weak.

I never felt completely justified to cry. What I went through and still go through everyday is horrific; mentally, physically, emotionally. It takes a toll on every part of you and after a while you just seem to accept that that’s that and that sucks. Even lying in bed, unable to walk and too weak to even get dressed by myself at 13 years old, I felt weak for letting it get to me. I should be better than this I thought. I know, that’s absurd but what can I say?

Its catch 22 though. I tried not to cry and scream and shout, and I kept a lot locked away from everyone. I remember sitting at the end of my bed, not crying, not talking, just staring at my hands and wondering if this is all my life would ever consist of. Pain and jealously for those who had it all. I was 13 and stupid and way over my head, yet I did not allow myself to cry. I just felt numb.

It’s always been an issue for me. I can pour my heart out and cry at Angry Birds but I cannot cry for me. I don’t know whether it’s because I’m at my most vulnerable and my shield is down. I don’t know whether it’s because I feel stupid and weak for letting something I’m so used to, getting to me. I don’t know whether it’s because if I cry, if I stop fighting for one second, I fear I’ll drift further than ever from my dreams.

I was told my many people when I got ill ‘you should be thankful, there’s so many people worse off than you’ or ‘count yourself lucky its not cancer’. I appreciate everything in my life, every single damn thing I have, can do and will do. I can do a lot despite my limits and restrictions but I also have the right to be upset about the things I don’t have and cant do. Better yet, I have the right to be upset about pain being a constant, never ending factor in my life till the day I draw my very last breathe. I have the right to get upset because while you were telling me I should be thankful, another minute of what should of been the start of my teenage years, passed with myself being in a wheelchair. I am grateful, I appreciate the smallest things in life, the smallest and the biggest, but I can be upset.

Only if 13 year old me knew that. The ‘you should be thankful’ is what I suppose started it off for me. I didn’t feel justified to cry because I should be thankful instead, so I stored it away (for the most part) and waited patiently for the explosion at the end of it all. Boy, did it go boom.

I however, am thankful. I am thankful of my up bringing because it set me up for what I thought could never be done.

I fight, every day and every day I will fight till the battle is over. What I’ve realised over the time span of being ill, is that I am strong. I am stronger than I or anyone thought I could be. I am a fighter and I have been always. I will never give in, its not in my nature to do so. I will take back control of my life, and I will do it will all my strength. I am strong.

My fight is never ending, forever testing my mental ability to stride forwards. My fight is never ending, I will always feel pain and frustration. I will always feel the bad side of life, the side we think will never happen to us. I don’t plan to suffer from my circumstances and I don’t plan on ever stopping. I have learnt I can cry while fighting, I can scream, shout, punch, kick and swear my way to the finish line BECAUSE I WILL NEVER STOP FIGHTING.

It’s okay to cry, I am aloud to feel weak. To fight is to constantly push and struggle, something most people don’t experience till they’re somewhat prepared for it. My life hasn’t even begun yet I am stronger than most adults. To cry means I’m trying, to cry means I feel and to cry means I’m pushing back. To cry means I’m trying through all the pain, and I will not be beaten.

I know I am strong and I don’t have to prove that to anyone. Being strong is pushing with all your might, but being strong also means knowing when you need a rest, to take a step back, breathe and prepare for the ongoing battle that is your body. I have realised, I am not weak to cry. I am strong by allowing myself to break, allowing myself to feel and allowing myself to breathe. I am allowed to feel weak and vulnerable, it takes a certain amount of strength to realise that in order to carry on, that’s what you need. To allow yourself to be vulnerable and in a place you could possibly appear weak is a braver act than many. I am strong because I know when to be weak, when to brush off the tears, get back up and laugh. As long as I always get back up, I will never be weak.

I am not a victim to my illnesses.

I am not a victim to my circumstances.

I am not a victim.

I can cry.

I can scream.

I will not give up.

I am not a chronic illness sufferer.

I am a chronic illness fighter.

And fight I will.

 

 

 

Let it snow, let it snow, let it snow.

| Maddie

I love Christmas but normally struggle to feel Christmassy when the merry time of year approaches. For some reason or other, the weather seem to alter my perspective of Christmas. Long story short, when its miserable outside, I don’t feel very Christmassy.

Lucky for me and the many people currently in the UK, it began snowing two days ago and hasn’t stopped since. It’s safe to say, I’m in love with the white sheets that cover the outdoors from head to toe.

Xmas 1

Well now I’m feeling very Christmassy, even if we aren’t there completely yet. I already took it upon myself to start early with the winter like habits. Christmas films have been none stop since the 1st November, hot chocolates on the increase constantly and even the décor and tree has been up since around the 1st. The snow is the icing on the cake for me, just too top it all off and to add to the Christmas Spirit.

Xmas 4

I had a great time making a 10 foot snowman in the front garden with my brother today, which then furthered into a snowball fight with the neighbours. It’s still snowing now, and it hasn’t stopped all day so hopefully the snow will be even thicker when I wake up tomorrow.

 

Must Haves For Pain Days

| Maddie

I woke up today as I expected to do so; tired and in a whole lot of pain. Yesterday evening, my family and I went to see Marilyn Manson. He was amazing, the atmosphere was amazing and I think it’s safe to say we all thoroughly  enjoyed ourselves.

So BAM, next day and my legs are killing and my heads pounding. Nothing I didn’t expect, but all the same annoying. As I was making myself comfy, grabbing all the things I want from the kitchen, getting blankets and jumper and all the bits & bobs I need, I came up with the idea to do this. So, enjoy.

My must haves on pain days:

1. Drinks

Keeping hydrated is important but so is feeling comfortable on such rough day. My first must have is an Innocent Smoothie. They are my all time favourite and the drink I crave most. Don’t ask me why, but I was put on this planet to drink the heck out of them, and drink the heck out of them I shall do. They’re full of different fruits so you get your five a day in one drink, and they range in different sizes and flavours. ‘Nuff said.

2. Blankets 

I think it’s pretty much the done thing to do when you’re ill; bury yourself under a blanket. When you’re ill permanently, you become best friends with your blankets. Yes, blankets, as in plural, as in many, many blankets. However, the fluffy human comforter isn’t just for cosying purposes, they’re also look cute too.

3. Heat

Ah, yes. What would my life be without heat? I love applying heat to the places that hurt, sometimes it just gives you that extra push you need, the push the painkillers didn’t quite reach. Whether it be hot baths mixed with some magnesium flakes, or a rice heat pack you microwave, heat is often my savour. I like to use a long rice bag, designed for soothing a bad neck. However, I often use it for my legs as it stretches across well and that’s were most of my pain occurs. My mum also buys me ‘Deep Heat’ heat patches that you stick on your back and neck, which help me out on those bad back days.

4. Netflix

Netflix is a great way to keep yourself entertained when mobility is an issue. Depending on what you watch, depends on the amount of energy you use which is perfect, if you ask me. If you’re in need of few good binge worthy recommendations from a Netflix Professional, read my ‘Binge Worthy Netflix Shows’ post!

5. Family & Friends

On some days, being around other people isn’t an option. However, on the days it is, spend it around loved ones. I always, always, always feel worse without my family around me to cheer me up. Hugs, laughter or just their presence is a brilliant way of getting through the pain flare you’re currently experiencing, in on piece.

6. Organisation and Cleanliness

This one is a strange one, but in fact something very important in terms of allowing me to rest probably. So having a clean room, hovered, bed made and no dust allows me to truly relax and feel comfortable in my little space. Maybe it’s just a Maddie thing, maybe it’s not, I’m not sure. However, I know 100% I cannot rest probably and to the best of my abilities if my room is in a state. It doesn’t help my pain per say, but it does indeed allow me to de stress and relax.

7. Loose & Soft Clothing 

One of the many sucky parts of having M.E means becoming sensitive. Whether it be light, noise, touch or smell, M.E impacts your ability to tolerate the things you could once before. Loose clothing is something I feel most comfortable in on pain days. Not just because it’s not hugging my body and doesn’t add to the feeling of grossness, but also because on occasions, my skin cannot tolerate tight hugging or rough materials. I often like to wear fluffy lined jumpers or clothing that hangs off me. PJ bottoms or joggys is always the way to go on a poorly day, having a baggy jumper means I can stay warm and flick my hood up without the uncomfortable sensation tight clothing can give me.

8. Pillows

Pillows, similar to blankets, are a much needed not feeling well item. However, a pillow under the back or to keep my head from feeling too heavy (I call it bowling ball head), can provide a certain amount of comfort. My mum bought me a pillow designed for pregnant women who have hip troubles. As silly as it may sound, this pillow is a 110% must. You put the pillow between your legs at night while you’re on your side and it for some reason, it works like a wand. I love mine, I highly recommend getting one if hip and back pain is something you struggle with.