Writing with a Chronic Illness.

I’m a writer. I love to write, i’m always tapping out or scribbling down something. I write poems, short stories, blog posts and bits of anything that comes into my mind. My dream is to write a book and have it published. I dream of walking into my favourite bookstore and seeing it on the shelves with all the other books I love to read. But writing with a Chronic illness is hard work, really hard work and it’s so frustrating it makes me want to scream.

Being a good writer means discipline. It means having the motivation to write every single day but it’s hard to do that when you feel like your brain is on fire. The words get jumbled inside my head and I can’t find the words I want to say. I get frustrated alot and my plans for different projects have to put back to the side so I can rest and come back to it later.

Writing is my passion. It always has been. It saved me from a lot when I was a child. When i was scared or alone or hurt, I’d grab out my pens and pad and start writing a story and I’d disappear into this make believe land that I created myself. I’d write about things that were so far from reality that I’d disappear into this fantasy land and I’d only come back when I was happy again. I dont remember any of those stories anymore, all my old pads were burnt when I left home. I wish I had them now so I could look back on them and realise how far I have actually have come with my writing skills. I do get so down on myself and tell myself that I’m a terrible writer and i’ll never write anything good enough that people will like reading.

Being a good writer takes time and practice and the only way to improve is to write. A lot of my writing today looks like a child has took to the page and attempted to write an adult story. Maybe that’s just how I perceive it and maybe I’d just been too down on myself.

Put together the brain fog from my chronic illness and my terrible procrastination skills and you will find out that not a lot of writing gets done on my end anymore. That frustrates me to no end because writing is my passion, it’s my hobby and it’s my dream to write a book that people will actually enjoy reading. I used to be able to write page after page before I got unwell, whether it was in my journal of writing bits of my book.

Some of my achievements I will mention as not to be so down on myself. But I have kept this blog and my book review blog running for over 6 months and that does make me proud. This blog is focused on chronic illness awareness and my health journey. And my book blog, I talk all things books. Because if you know me, you will know that I love to read. Reading has also been another one of the things that saved me from so much hurt as a child.

Tell me your experiences with writing in the comments, whether you have a chronic illness or not. Any tips will definetly be appreciated because I need to get my book out there. I would love to hear from writers who are published or not published. I would love to connect with some of you out there! Follow me on my social media links and come and chat to me about writing or books or just general life.

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Book Review Blog.

– Charleigh.

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How Anxiety Affects My Life.

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 I have suffered with anxiety for many years. It’s something that cripples me and seriously affects my day to day life. I hid my mental health problems for many years, I refused to acknowledge there was a problem, I did everything I could to hide it. Everything always comes to the surface though, you can’t bottle things up forever.

So now I’m speaking up. I started this blog in the hopes to educate people on the different aspects of my life. If I can educate one person on anxiety or PTSD or FND. If I can teach a friend or a mother or a teacher or even a doctor on how mental and physical illness affect someone on a day to day basic. If I can help someone to understand what maybe one of their loved ones is experiencing then this blog will have served it’s purpose.

Anxiety can affect anyone and at any age and you don’t have to have had anything traumatic happen to you.
It can strike even the most confident person. It can stop you from working, socialising and going to school.
It’s a lot more than ‘just being shy’. Everyone’s experiences with anxiety are different. Not everyone with anxiety suffer with panic attacks. It isn’t always seen. I can only speak about my experience with anxiety. My anxiety will be completely different to the next person.

My anxiety stems from my past. I am open that I have PTSD, I am however not open about why I have PTSD. Most things I get anxious about have already happened. I panic that history will repeat itself and I get stuck in the same cycle day after day. I am a worrier. I worry about everything. I worry about money, my family and friends, my pets. I worry that people or my pets are going to die or get seriously unwell. I am always worrying about something.

Anxiety makes me feel like I’m walking around the streets with no clothes on. It makes me feel exposed and like everyone is staring at me and plotting to hurt me. It feels like a million thoughts are clouding my vision and my rational mind is buried by all this panic. Public transport panics me, crowded shops and streets, ordering my food at a restaurant, paying for my things at the supermarket. I could go on but we’d be here forever.

They’ll be days when I’ll shut the world out and I won’t want to talk to anyone because I’m terrified of this parasite that’s causing me to panic. That’s what anxiety feels like. It feels like a parasite has attached itself to your thoughts and it’s attacking you, hour after hour, day after day. No matter how hard you try, you can’t get rid of this parasite. It’s decided that your thoughts are it’s new home.

I have good days and bad days. But lately it’s mostly bad days. The memories of my past threaten to suffocate me and the anxiety of it all sometimes gets too much. It’s impossible to know what to do and feeling so trapped and suffocated hurts so much, sometimes I don’t want to be alive. It’s exhausting.

My experience will be different to the next persons. Everyone’s anxiety affects them in different ways. Some people can’t out alone, some people can’t use public transport. Anxiety is a little demon that sits on your shoulder and whispers things in your ear. You try so hard to ignore it but it’s hard to think rationally when your mind is filled with panic.

It’s terrifying and isolating. I get so angry when someone doesn’t understand or disregards it as being ‘lazy’ or ‘anti social’ or even stupid. It’s not any of those things. I think some people think like this because they haven’t been educated about anxiety, they maybe don’t know what it is or understand that it’s an illness that needs to be treated just like a broken leg would. So many people across the world suffer from this horrible illness.

You can’t always see that someone is anxious. Sometimes you might not even know unless they tell you.

Anxiety ruins lives and isolates so many people. It’s a real illness and it can be very hard for people to live their lives in the way they want to.

Anxiety isn’t something you can just switch off whenever you feel like it. It’s always there, it’s always controlling you. Anxiety is real.

Learning to Say No and Other Musings.

Lately, I’ve been thinking what I want to do with this blog. My main focus is raising awareness and trying to educate people on my chronic illnesses and life as a chronically ill person. And hopefully learning things myself along the way.

 

Update.

I haven’t done an update for a while so I’ll get that out the way first. Things have been pretty crappy to be honest. I have FINALLY moved house which feels amazing. I was living in a first floor flat and when I lost the partial use of my legs last May, I had to bum shuffle up and down the stairs whenever I wanted to go out. The flat was not accessible in the slightest and it was honestly awful – absolutely awful and so disheartening. My housing association left me waiting there for 7 months. 7 MONTHS. Which I think is absolutely disgusting and I dread to think how many other people are out there in the world in my situation – or worse.

So at the end of January, I lost the complete use of my legs and what I mean by that is I can’t move them at all now unless I physically pick them up and move them. It’s awful and so heartbreaking and not knowing how my condition might progress is so scary. I am going to do a post on my main chronic illness FND soon so watch out for that. I saw occupational therapy last month and they have given me some equipment which is really helping me.

I finally have an appointment with the specalist I mentioned a few months ago. It’s in London so it is going to a trek but if it gives me some small grain of hope then it will all be worth it. It’s just a pain that I have to wait until July BUT I am just so grateful that he is actually going to see me. I’m also on the waiting list to see the neuropsychologist for my NEAD.

I think I’ve probably covered everything health wise. I’m just trying to keep busy and distract myself and doing little bits here and there to try and help me feel a bit better about myself.

Learning to say no.

If you know me, you will probably know that I am absolutely terrible at saying no. I hate letting people down and I hate admitting to myself that I’m not able to do everything I used to be able to do. I also hate saying no to myself. If I have a mental note that I have to do things then I hate not completing them. But I am learning and I am trying to say no more often. I’m trying to pace myself and listen to my body – something I never really was able to do before. I am quite lucky in the sense that most of my friends have chronic illnesses themselves so they understand if I don’t reply to their message straight away (or at all) or if I can’t do something. My best friend understands that I’m not able to do something we have planned or help around the house.

I really do try to think positive and focus on the things that I can do rather than what I can’t. It’s not always easy and sometimes I just need to wallow in self pity.

I think that’s all I have to say at the moment. I am trying to grow this blog and raise awareness – and doing my favourite thing, writing. I want this to be a place that people can relate to my posts and maybe learn a thing or two. If there’s anything you would like to see please let me know.

Well if you’ve made it to the end of this post – well done you! ☺

Come and find me.

You can contact me here; charleighsbooknook@hotmail.com

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Dear My 18 Year Old Self

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Dear Charleigh,
I know things are tough, I know big changes are coming up.
You’ve been moved out into the big wide world, away from the safety of the refuge.

Your with a guy that you don’t really love, and who is messing with your head, who repeats to you that the devil is watching.

It breaks my heart.
I want to tell you that bad things are going to happen again, that everything will crumble around you.

I want to warn you of the upcoming battles, I want to tell you not to push everyone away again.
I want to tell you to be careful who you trust, I want to make you promise that you will speak out and not be afraid,
because your an adult now and your not in the refuge anymore, nobody is looking out for you,
Your on your own.

The guy you fell for, the one you looked to for safety and love, will hurt you in so many ways.
He will not respect your space and boundaries, and he will threaten you and scare you into doing things you don’t want to do,
he will keep a surprise in your draw, and try to get you into trouble.
The police will be called and your house will be searched.

Don’t push people away,
It’s okay to lean on people for support.

When all that’s over and he’s moved back to his parents, you will think everything is okay and you can carry on.
But it won’t be that easy.
Things will seem impossible, and you will do anything you can to block the pain out.
You will continue to isolate yourself,
and depend more on the online world you’ve joined.
You will lock yourself in your flat, hardly seeing anybody from the outside world,
You won’t leave the safety of your box bedroom and you’ll spend everyday there, scared to leave.

You will obsess over weight loss and will do anything you can to become your definition of perfect.
I would tell you that perfect is not attainable and it will destroy you.
You will take handfuls of water pills, laxatives, diet pills and restrict your intake until your barely eating anything.
I would tell you it’s not worth it and to get out again while you can.

You will lay in your bed at night unable to sleep, you will cry with loneliness.
I will tell you not to get involved with that girl, that she will tip you over the edge, that you will try to end your life again.

You will end up in a psychiatric hospital, but you don’t belong there, but still you are and you hold onto the safety that is there.

I would warn you not to trust your nan and that your mother will find out where you are.

Then after 2 months locked away, you have no other choice but to go back to the refuge.

Months go by and your still so terrified, you feel lost in the world.
Soon it will be time to move on again and you will be at a loss for where to go.

You will be left with hardly any options, you have 2 weeks to find somewhere else and your petrified.

I would tell you it’s okay and that there not against you, I would tell you not to take those pills and that it’s ok to be scared to move on.

But you probably wouldn’t listen because your scared and fear does strange things to people.

You’ll end up in a hospital again with no recollection of your actions.
You’ll feel even more stupid and lost and it won’t change what’s upcoming.

You still need to move on, you still need to go out into the big scary world.
You will move back into the flat that broke you except this time you decide to do it right, to do it properly.

You fight against the lie that giving up is the way, you buy things you need and everything is okay for a little while.

I would tell you that things will get bad again.

Eating will be scary and life will be scary.
You will run away and try to find something that confirms your real, you will take another overdose.

You will scream at them to let you home but they put you in hospital anyway and your devastated.

You will feel that the police have betrayed you and they do because they tell your dad that your in hospital.
You haven’t spoken to him or mom in months.

You try to fight them away, I would tell you not to trust dad, I would beg you not to let him in again.
That it will all go wrong but It will feel like the right thing to do.
It will feel amazing and right and good but it’s not.

He will come to see you a few times and you will think he’s changed and it will feel euphoric.

Soon he takes you out and about, he says he will help you make your flat a home and starts decorating and finding you things you need.

You stay with him for overnight leave and you realise that he hasn’t changed, he’s still the same old drunk he always was.

The hurtful word piercing man he was before, the blows to your chest are the same as before, the bruises are still the same as before.

You go back to the hospital where you lie in your room, burying your head in books and deciding not to trust anyone ever again.
It’s not safe and it’s not worth it.

You get discharged and hide away in your flat, ignoring everyone, missing your appointments and not caring.

I would tell you to stop isolating yourself, to let people in, let people help
but I am you, and I know you wouldn’t listen.

But then someone will come along
and make everything okay again.
You will learn to trust this one person
and you’ll let them in.

Things will get better,
things won’t be perfect and they’ll still be nights you lie in bed and contemplate if life is worth living.
The voices will still dominate your mind
but you won’t be alone,
you’ll have someone in your corner, fighting with you.

I would tell you to stay.

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Dear Charley….

*Written when I was 18 years old.*

Dear Charley,

When I look at the photographs from years ago, you sitting there with your ocean blue eyes and the fly away hair,
and the little blue dress,
it seems like a different person, it doesn’t seem like me
it breaks my heart.

I want to tell you that bad things will happen,
that you won’t always be that happy,
everything will hurt and you will want to die.

I want to warn you about that day and those nights,
I want to make you promise me that you won’t keep anything a secret,
because you’re just a child, you are only 5 years old and you don’t have to be brave,
and when you grow up a little,
you still don’t have to be brave,
you don’t have to be strong for anyone,
its alright to cry.

Afterwards, you will lay in bed,
you’ll be terrified and unable to sleep,
some nights, you won’t get to sleep in your own bed,
and you’ll spend the night in a dark dingy cellar,
you’ll shut you eyes and escape to a pretend land you’ve made up.

Soon it will seem like an awful nightmare and you’ll pretend it didn’t happen,
but it did happen,
and I know that’s impossible to accept.

By your fifteenth birthday, you won’t feel anything anymore,
you will be numb
and in one of those awful moments,
you will lock yourself in the bathroom and draw a blade quickly across your leg
and you will say to yourself,
‘if anybody is going to hurt me, then it will be myself’
You are in control, but I promise you that you aren’t in control,
its a cruel illusion,
because it happens again and again,
your exposed bones and scarred skin will not save you.

Over the years you will write pages upon pages and you will read hundreds of books,
and you will do you best not to upset or anger people.

You tell yourself that you are holding it together while you hide the scars under your clothes,
and you can’t tell anymore if you’re eating or not.
You will become so cold that you won’t like anybody touching you
and the anxiety rises up in you chest like a heavy weight.

I know all this seems beyond awful,
and I know there will be days when you are so tired that you can’t even take another step,
and whenever you want to give up entirely, just remember that you survive.
At 18 years old, I can tell you this, you survive the first time,
you survive the second time,
you survive all the other times,
these terrible things happen to you and you survive,
slipcovered in lies and scars.

Things I Wish People Understood About Chronic Illness.

I’m sat on the sofa and all of a sudden, I can’t feel my legs. This is a regular occurrence for me. The exhaustion engulfs me, the simplest things overwhelm me.

A lot of the time its all about riding the waves, its about trying to find things you can do whilst unwell. Its about having a nice day out then needing to rest for a week. I’m 22 years old and a lot of the things I used to love to do, I can’t do anymore.

I feel like a burden a lot of the time because I can’t do the things I used to do, the things I so desperately want too but my body just can’t cope with. I try my best, but sometimes it just doesn’t feel like my best is good enough.

I am wheelchair bound. My flat is too small for me to use my wheelchair indoors so I have to bum shuffle around. Its so exhausting, but I do it anyway because I refuse to lose any more independence and put more work on my carer.
I get so many different reactions when I’m out and about. I get dirty looks, stares and looks of pity.
I do not want or need people’s pity. I am still me, I just need extra help to do normal everyday things.

Here are some of the things I wished people understood about my chronic illnesses.

1. A good day doesn’t mean my symptoms have gone away.
I am still in pain, I am still exhausted. I am just better able to function. Or I am able to push through the symptoms. These good days are less often now.
The prospect of being unwell for my entire life, is terrifying. I don’t know when I’ll have a good day, when I do I just have to grab it with both hands and make the most of it. Although, the good days always lead to a flare up as I do too much thinking it’s okay.

I have to cancel plans because I’m too unwell.
This leads to people thinking I’m lazy and don’t want to see them. When in reality I want nothing more than to see that person or do whatever we were planning on doing.
I can’t predict when I’m going to be okay to do things. Planning things in advance is a nightmare for me. It causes me extreme stress because I don’t know if I’ll be able to do it or be well enough to enjoy it.

3. It’s not fun to sit around all day.
This is a massive one. It is not fun or enjoyable to sit on my sofa or lay in bed, day in and day out. It’s fucking frustrating and upsetting. I want nothing more than to get a job and enjoy my life.
Some days it’s hard to even concentrate on my book or cook a microwave meal, let alone go out to work.

4. Just because I’m smiling, doesn’t mean I’m okay.
I smile, alot. It’s my coping mechanism. I refuse to let my illnesses get the better of me, so I try my best to see the positive in every situation.
I hate people asking me if I’m okay or if I’m feeling better, so I smile like everything’s all good. I don’t want to be known as the miserable one who isn’t any fun, I don’t want people fussing me around all the time. I don’t want pity.

5. Everything isn’t always about my illness, but it kinda has to be.
I don’t want everything to be about my illness but that’s hard for me, when my life does revolve around my illnesses. It effects everything I do, it effect what I can and can’t do. I’m in a wheelchair so there are places or things I cannot do. It is incredibly frustrating. I’m sorry that my problems affect your decisions. I don’t want it to be that way.

6. Limiting myself and rethinking goals is not the same as giving up.
I have wanted to start uni for a long time and have always not been in the right place. But in February I am starting an Open uni degree, part time. I know it will extremely hard and more exhausting but if I can get one step closer to my goal, it will be worth it. I have always wanted to go to a campus uni but I had to rethink those expectations and come up with something new.

7. I am not ungrateful, I do not take people for granted and I do realise how hard it is for my carer.
I have been blessed with an amazing best friend who became my carer when things took a turn for the worse.
She has been there for me through thick and thin, through everything and I will be forever grateful.
I do understand that it hard to do so many things for another person and I do appreciate it. If she turned round to me one day and said I can’t do this anymore, I’d understand.

8. I appreciate the small victories.
Sometimes all I can do one day is get on and off the toilet. Other days, I can go out and have a day out at the zoo.
When my legs are so weak or I’ve lost feeling, just moving them slightly is a victory.

Having a Chronic Illness, whatever it is, sucks. Especially when people around you, don’t understand.