Body positivity!

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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
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Collagen. That pesky protein!

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Ehlers-Danlos syndrome is known to affect collagen in the body, but how does this affect those who have it and why? Here are some facts about the pesky protein:

  •  Collagen is the most abundant protein in the human body and is an important componant of connective tissues.
  • It acts as the glue that holds our body together so if it’s faulty then it can be a huge problem!
  • It forms a scaffold to provide strength and structure in our bones, skin, muscles and tendons.
  • Collagen molecules are a triple helix and are made up of three long polypeptides. These are then coiled together which makes it strong and flexible.
  • Collagen makes up one third of the protein in the human body.
  • It is needed in the replacement and restoration of dead cells.
  • As we get older we produce less collagen.
  • There are at least 16 different types of collagen.
  • Collagen can be found in all connective tissues all the way down to blood vessels and organs.

As you can see collagen is relevant in most of the body so for people with connective tissue disorders, like Ehlers-Danlos Syndrome, it can cause huge problems!

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http://www.livestrong.com/article/78360-collagen-functions/

EDS Fact: Number 83

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Ehlers-Danlos Syndrome can affect every person differently and every case is unique. Even in one family there can be a very wide or very narrow range of severity. Symptoms and signs can vary for each type of EDS and can range from mildly loose joints to life-threatening complications. It is important to remember that everyone is different and to treat each person as an individual.

Dear judgemental person…

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Dear person who left this note in my car,
Thanks for judging me when you don’t know me. What gives you the right to decide that I am not worthy of a disabled space?
I may look like a “normal” young woman but that’s because I try my best to fit into society and not let people know that I’m in pain. I’m not pretending to be sick, I’m pretending to be well.
I have numerous invisible health conditions. I have a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome. This is a multi systematic condition and affects everything from my brain, my joints, my heart, my bones, gastrointestinal system, in fact there is very little that it doesn’t affect! I also have other invisible illnesses such as gastroparesis, dysautonomia, raynauds and many more. I don’t shout about these as I’d like to live my life as best as I can. These conditions vary massively from day to day. I have carers, district nurses, lots of hospital consultants and appointments. I shouldn’t even be explaining myself to someone who is so judgemental but I feel it is necessary to educate you and your small mind. Next time you see someone and think they don’t deserve a disabled spot then why not ask what’s wrong? I’d prefer to explain how my conditions affect me to your face rather than be left an anonymous note. I’ve had two surgeries in the past 8 weeks and numerous infections including a spinal one I am currently fighting so I think I’m allowed to park a few steps closer to the door thanks.
Please think before you judge someone. You have no idea what’s going on in people’s lives!

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Update.

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Sorry for the lack of blog posts recently, I’ve had so much going on and it has all been a little overwhelming.
Last time I posted I was about the have the sacral nerve stimulator removed due to infection. The surgery went okay, the device was removed and they discovered I had a deep rooted infection and abscess in my back. I had this removed and then had nurses visit daily to come and pack and dress the wound. I am still on antibiotics and I’m awaiting the results of a recent MRI scan of my spine. It is extremely frustrating as the device was helping me lots but unfortunately the infection meant it had to be taken out. Hopefully in the near future I will be able to have it implanted again!
The cold weather means that my joints and raynauds are playing up at the moment. I have a pain management appointment tomorrow and I am awaiting a small bowel study at Salford Royal.
I am hoping that I manage to enjoy the Christmas period with my family and friends and I wish you all a Merry Christmas and a Happy New Year!!!
Love & Hugs, Charlie xoxo

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