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

Twitter.

Instagram.

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.

What PTSD feels like.

I constantly feel on guard, waiting for something to happen. It’s hard to let myself feel safe, it’s like having a protection shield up around all of the time; just in case.
It’s like being held underwater and you can’t come up for air. You’re stuck there, it’s impossible to loosen the chain that’s around your ankle, holding you down.
It’s like being forced to walk over broken glass, without anything on your feet. But the feeling spreads all over your body. Scratching the surface. You can’t get rid of these feelings, they’re everywhere. They’re watching your every move.

You’re stuck in this constant cycle of remembering the traumatic events and fighting to forget it ever happened.
It’s not knowing what to do anymore, you’re an outsider in your own body.

  I have lost so much due to my PTSD.
I couldn’t complete my college course due to my illness, I lost friends who didn’t understand what was wrong with me. I’ve had people call me attention seeking, lazy, crazy, stupid and so much more.
I’ve had to cut so many people out of my life, who are or could have been in contact with my abusers. I can’t take any chances.
I’ve had to spend the best part of 2 years in a refuge, hiding from them. And still to this day I am hiding from them, I will always be hiding until the day they die.
I’ve had to change my name and move miles and miles away just to get away from them. It’s not safe.

PTSD is so misunderstood. People don’t talk about it, it’s not something that comes up in everyday conversation.
When people think PTSD, automatically they think soldiers who’ve been in war. That is not the only reason that people develop PTSD. It can occur when someone goes through any traumatic event, whether it be rape, assault and child abuse and so many more.

My emotions are all over the place. One minute I’ll be consumed by an overwhelming sadness and i’ll just want to end my life, the next I’ll be furious with myself, with my situation, with anything. I hate who I’ve become, I hate this is the person I am. I don’t want to be this way anymore. I want things to be different but I don’t know where to start.

I lose so much time. I’ll forget the day, I won’t remember what happened yesterday or the day before. I’ll feel like i’m detached from my body, i’m over the other side of the room yet I’m sat somewhere different. I’ll be eating a yogurt but that’s not my arm, it doesn’t feel like my arm.

I feel out of control, the past swallowing me up like a tidal wave. It’s been consumed with anxiety every single minute of every single day. I can’t get away from my fears because they eat me up from the inside. Swooping down and reminding me that I’m not safe. I’m not safe because they will always be there, knocking around in my head, reminding me of why I should be on guard, reminding me of what happened every.single.moment.

I feel guilty. It was all my fault, because let’s face it, whose else was it? I feel guilty for things in my present life, I feel the need to fix things, even if I know deep down I can’t. I can’t make people angry because I’m afraid of what might happen if I do.

I just feel like this is going to be my life forever. So many years have been clouded by the trauma, I’ll never get that time back, I’ll never be able to have a childhood because that time is gone.

It’s knowing that human beings can be evil, they have the power to destroy you in a blink of an eye. That even people who you love and look up too can hurt you beyond belief, they can break you.

You’re on autopilot, no control over your thoughts, actions, feelings, dreams, body. Everything is my life is affected, I am wired into survival mode all the time. I have to be on guard, just in case. It’s like my rational part of my brain is shut down when I react to something my brain intercepts as wrong.

I’ll be sitting on the sofa, watching something completely unrelated to trauma and i’ll taste something in my mouth. Is that beer? There isn’t any beer in the room but the taste is very real in my mouth. I drink water, desperately trying to rid myself of the taste but it’s still there.

Anything can be a trigger, you have to be careful because you cannot be reminded, you cannot remember because that is too overwhelming and too scary. It can’t happen.

It’s feeling wrong, bad, taken. It’s knowing that my body will never be my own. They took that away from me.

What does PTSD feel like?
It feels like living in a prison. You’re rattling the cage doors but you can’t get out. You can’t ask for help because they keep you imprisoned. They’re whispering in your ear, not allowing you to ask for help.
It feels like hell.

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.