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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You Know My Name, Not My Story

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You know nothing about me. You know my name, not what I’ve been through. Nothing about me but my name.
Yet you still stand there and judge me, acting like you know everything, picking at my flaws, picking away at my insecurities. Things that I’m ashamed of.

If you knew me, like really knew me, you wouldn’t be so quick to judge.

You don’t know about my childhood, about every horrible thing that happened to me – again and again. That it’s broke me, it’s changed me as a person. I will never be the same. I lost my innocence and I will never get that back.
So yes, I am needy. I do get attached to people and objects very easily. I do lean on others so that I feel safe and secure. Because I’ve never had that in my life, I’ve never felt safe and secure and loved. Yes I get angry and snap out of frustration, that it’s so frustrating in my mind, I just can’t take it.
You don’t know that anything can trigger me. A picture, a song, a tv program, a comment someone makes.

You don’t know that I spent the best part of two years in a refuge – hiding. Running away from that childhood. The danger I was in. You don’t know how afraid and alone I was, with no one to turn too. I couldn’t even walk down the street without turning in every direction in fear. Without feeling my heart beating faster, sweat dripping down my neck.

You don’t know what happened next. That I was a mess, fighting against my unrational mind, it always winning. You don’t know the lengths I went too to destroy the memories, the bad parts. Overdosing and self harming and hitting my head against a wall, just to destroy it, to forget.

You don’t know that I fought against an eating disorder for years. That it nearly killed me. How far I went just to achieve my idea of perfection. My weight dropping, my body getting weaker and weaker. Taking every diet product I could get my hands on. Getting so hungry my stomach would scream out in frustration, I’d be crouching over gripping my stomach in pain. The urges overwhelming me so I order 6 people’s portions of pizza and eating it all, for the voices to then scream out at me so I end up throwing it all up until I spit blood.

You don’t know that after all that, I rise above. I move miles away from my home, the place I know, my godchildren. Just to get away from my family.

You don’t know that I’m in pain every second. Physically and emotionally. My body screaming out in pain, spasms shooting through my body. The exhaustion crippling, that even going to the toilet is too much.
My mind refusing to give me a break, refusing to let me forget, refusing to let me live. No, I can’t walk. No, I can’t do everything I used to do. No, I don’t demand things, I don’t take people for granted.

I am thankful for everybody and everything in my life. I am thankful for the support, the love and care. You don’t even know that I am a writer, a friend, an animal lover. I love reading, criminal minds and Mariska Hargitay.

I am so sick of people taking it upon themselves to judge me, to throw my name around like it means nothing. I am a person and I have feelings.

So yes, I am needy and I am fiercely protective. I have flaws like everybody else, alot of flaws. But before you think to judge me, think what your comments can do to me. Have the decency to get to know me, to find out who I am as a person before you make comments about who I am and what I do.

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.