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.

Twitter.

Personal Instagram.

Goodreads.

Bookstagram.

Book Review Blog.

– Charleigh.

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.

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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.