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

 

 

 

 

 

 

 

 

 

 

Advertisements

Collagen. That pesky protein!

Standard

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!

colle

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

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

Dear judgemental person…

Standard

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!

potbadge

Update.

Standard

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

xmas.jpeg

Not all disabilities are visible…

Standard

So lets be honest, although most of us probably don’t want to admit it, being judgemental seems to be human nature. I have judged people and I have been judged but we don’t know everyone’s story and it’s a sad trait to have. I guess a lot of it is to do with stereotyping. There are so many stereotypes out there and these seem to get passed from generation to generation and it really needs to stop.
I went to a hospital appointment recently with my carer and was waiting to park in the disabled bay. I’m a 25 year old woman with invisible disabilities and I was judged by two different people whilst waiting. A gentleman who was coming out of the bay wound his window down and made a hand gesture to call me a “w*nker” and an elderly woman who must have wanted the space called me a “silly cow” and waved her blue badge at me so I waved mine back at her! A similar thing happened to my friend recently. She is 18 and she was waiting for a disabled bay and an elderly woman wound her window down and told her that those bays were reserved for disabled people so she showed her badge and the lady then said that they were for “elderly people” and that she should go and park elsewhere.
Think about it. Have you been judged? Have you judged someone? We don’t know everyone’s individual story.
The really thin girl you assumed was anorexic may be desperately trying to put on weight or could be fighting an invisible illness that makes gaining weight difficult for her.
The guy you saw on crutches struggling to walk last week who is walking today may be suffering with a condition that varies massively, it doesn’t mean he was faking it.
Please try not to stare at the young girl in the wheelchair trying to figure out what is wrong with her.
The guy who has used the disabled toilet but looks “normal” could be suffering with IBD.
Not all disabilities are visible. Not all disabilities are the same. Think before you judge.

judge
Love & hugs,
Charlie xoxo