The ugly truth behind chronic illness

Standard

So this video was really difficult for me to upload as I struggle massively with letting people see me like this but this is the ugly truth of what a “bad day” can be like for me.
How can I expect others to understand if they only ever see the smiley happy Charlie, when quite often this is my reality? We also need to raise awareness of invisible illnesses to stop the judgement that is still surrounds disabilities. No one should have to explain and prove how sick they are.

Have you got any stories about times when you have been judged? Please pop them in the comments below, I’d love to have a read!

Since you’re so wonderful subscribe and press the bell to make sure you don’t miss any exciting new content! ►► https://www.youtube.com/channel/UCKA6… For more information on Ehlers-Danlos Syndrome check out https://www.youtube.com/watch?v=Kf_-K…

___________________
Socials Instagram: @invisiblezebrax Facebook: https://www.facebook.com/invisiblezeb… Twitter: @charliechats_

Love & hugs, Charlie xoxo

Advertisements

Back on YouTube!

Standard

Hello chickens!

I’ve been meaning to start my YouTube channel for a while now but haven’t had the confidence or energy. I’m currently recovering from surgery so there is no time like the present hey!

I’d really appreciate if you could take a look at my channel, watch some videos and subscribe if you like what you see!

CLICK HERE TO GO TO MY YOUTUBE

Thank you in advance if you do have a look x

Body positivity!

Standard

This day and age it’s so easy to be sucked in and consumed by the media and all the “perfect” bodies we see on our TV screens, social media feeds and magazines. You only have to log in to be bombarded with pictures of girls with flawless skin, amazing figures and insane make up, but it’s not just girls, the guys are also athletic looking with great skin. I find it extremely sad that we live in a World where we are consistently judged on our appearance. We are made to feel that beautiful people are successful and nice when in reality it is what is on the inside that counts. It is even sadder that the “perfection” that we seek is totally unrealistic as most of the images have been photo-shopped and airbrushed. The images we see are all staged and shot at specific angles which are flattering to the models. They aren’t giving an accurate representation of what people look like and this makes so many people struggle with body image issues, myself included.
I’ve always struggled with my appearance. As a child I was fat, ginger, freckly, wore glasses and had braces, so needless to say I was constantly made fun of because of my looks. The deterioration of my health hasn’t helped me with confidence if I am honest. In the past few years I have had multiple surgeries leaving me with 8+ scars. We rarely see models with scars or any imperfections and therefore society doesn’t see this as the “norm”. For this reason since my first surgery I have been extremely self-conscious of letting people see my scars and covered them up. I stopped wearing crop-tops, would only wear high-waisted bottoms, began wearing swimsuits to ensure that my stomach was always covered and became extremely anxious. I was terrified of people seeing my scars and staring at me. I developed massive anxiety and didn’t even want to see my scars myself. I hated my body, I hated people seeing it and I hated seeing it myself. I was cheated on by my long-term partner and blamed myself, my appearance and my illness. I found myself in a downward spiral of depression.
Over time I have learned to deal with a lot of these issues. I began to accept my flaws and scars, not fully, but I am getting there. I have changed my mind set and now I know that my scars are not something to be ashamed of, but something to be proud of because they mean that I survived. If people want to stare at my scars then that’s okay, I understand that this isn’t the “norm” and that people aren’t used to seeing them.
This year I have managed to overcome one of my biggest fears. I bought myself a two-piece bikini (and it wasn’t a high-waisted one that hid my scars!) and I wore it! Now this might not seem like a big deal but to me it was huge! I was extremely anxious and people may have stared but my scars are a part of me and are tales of my journey so far. People are always going to be judgemental, unfortunately it’s human nature, but hopefully I can do my bit to raise awareness. I’m still super body conscious, I will never be skinny and I don’t have flawless skin. I have multiple scars, loads of stretch marks, a device implanted in my spine and so on but I am here, I am alive, I’m stronger for it and I am real. I have to make the most of every single day, be that on my feet, with a walking aid or in my wheelchair! So now the even scarier part, here are some photo’s of my scars. They are my battle wounds and a reminder to me that I am strong and I am a warrior! I hope that this post helps to raise awareness and if it helps just 1 person then that is enough.
Love & hugs, Charlie xoxo
scarscascatttt

scarsssss

 

 

 

 

 

 

 

 

 

 

Make the most of every day!

Standard

Living with a chronic health condition can be tough. Life is a constant battle against your own body and it’s so exhausting. I’ve come to terms with the fact that I may not be able to do certain things that I’ve always wanted to do at ease (such as going to Glastonbury which I’ve been watching on the TV and have gotten extremely jealous) but there are things that I can do. I’m trying to take steps to improve my health as much as I can and focus on the things that I do have control of. It’s draining pretending to be okay when you really just want to lie in bed and cry but I refuse to let this condition beat me. It’s frustrating knowing that having a “good” day and making the most of it by doing something will more than likely lead to repercussions in the form of fatigue and more pain but I can’t let that stop me from enjoying those days. I can’t just sit in waiting for a bad day to happen and waiting for the next flare. That isn’t living, that is existing. I am determined to live the best life I can, even if it may be different than I planned!
Love, hugs & hope, Charlie xoxo

disss

Believe in yourself!

Standard

The past 12 months has been full of ups and downs. I have formed new relationships, had relationships break down, moved house, started a degree and many other memorable things. Sometimes I feel as though it is important to look back and reflect on what has changed and what I’ve actually achieved. I guess that day by day things don’t seem to change but when you look back everything is different.
 There is no doubt that having a chronic illness can put a lot of strain on romantic relationships. I had a romantic relationship break down last year. The relationship started before my condition began to deteriorate and before I was actually diagnosed with Ehlers-Danlos Syndrome and this brought me a great deal of guilt. I guess that I felt as though I had somewhat tricked my partner at the time because he started building a life with a healthy-ish young woman who went to work, went out with friends and was able to do fun stuff and then years later, during my lowest periods, was stuck with a very sick person who could hardly leave the house. I think I started blaming myself for the breakdown of the relationship but looking back I was and I am still me, just a slightly different version! If people can’t see that then it is their problem,
For a while I lost myself. I didn’t want to see anyone. I didn’t want to do anything. I felt extremely low and I thought that life couldn’t possibly get any better. I felt trapped in my body and couldn’t see a way improving things but I did. I managed to turn my life around somewhat and yes, there are still lots of things that aren’t perfect but I have been able to change some things for the better. I believe in myself now. I have discovered that a bad day doesn’t have to be a bad week. I have come to terms with the fact that some days I am going to feel better than others and yes, it is very frustrating that I can’t do some of the things I enjoy doing but I have realised that there are still things that I can do!
I think that acceptance is one of the most difficult things to deal with when being chronically sick. It is hard to accept that you might not have a day when you are “pain free”. It is hard to accept that you may not be able to do some of the “normal” things like work 9-5. My dreams of travelling, having a family, running a marathon etc. may have to change slightly but I have accepted that and realised that it doesn’t mean it won’t happen, I may just have to go about things differently. I have lost some people through getting sick but I have also met some amazing people and realised who is really there for me. I am so thankful for the people that see me for who I am, Charlie the music loving gig-junkie, rather than Charlie who is sick!
I guess the point of this post is just to say don’t give in. Don’t let anyone take you for granted. Don’t let anyone make you feel like you owe them something because you are ill. Don’t let people treat you differently. If someone judges you then it speaks more about them that about you. Follow your dreams. Believe in yourself. I believe in you!

believe