Goodbye 2017, Hello 2018

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!

 

 

 

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

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

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.

 

 

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.

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.

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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.

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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?

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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.

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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.

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.