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

 

 

 

 

 

 

 

 

 

 

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

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

Update.

Standard

Hey everyone,
So I know I haven’t really posted for a little while, I’ve had quite a lot going on lately. I’ve been back in the hospital a few times again for gastro issues and also gynaecological problems. They finally seem to have gotten to the bottom of the pelvic pain that I’ve had for the past few months and I’ve had treatment for pelvic infections, kidney infections and urinary tract infections. I am still struggling at the moment but I am now on another course of antibiotics for 4 weeks.
Last week I saw my gastro doctor and he reviewed my previous MRI results. He explained that it showed I had a rectocele prolapse which I was aware of but it is a shame that after my surgery it hasn’t improved like some had hoped. We discussed an NG tube for feeding/fluids as I am struggling with my stomach at the moment as I feel as though I am always full and am getting very bad nausea and reflux, this is due to my delayed gastric empyting. His concern is that if I have an NG tube and my stomach isn’t emptying then it may not be beneficial, however he also said we won’t know until we try. He has put my on a 4 week course of antibiotics which are used for treatment of delayed gastric emptying and I am going to be seeing him again in 4 weeks.
My joints are causing me some pain at the moment. I have been trying to do some exercises to strengthen my legs and this seems to be helping me massively but my shoulders, hips etc are still very unstable. Last time I saw my physio he asked me what I’d done as my shoulder wasn’t in place and he seemed shocked when I said I’d just rolled over in bed but for someone with EDS this is our reality. A simple knock can cause injury and dislocations/subluxations. I had to have my shoulder taped up to try and keep it in place and it really helped but unfortunately I had a reaction to the tape so had to take it off and now the instability seems to be coming back.
Next week I have an appointment with my cardiologist and an appointment for a flexible cystoscopy which is when a camera is inserted to my bladder. My urologist wants to check that everything looks okay in my bladder and that I don’t have a blockage or narrowing which could be causing a lot of my problems. If everything looks okay and my previous MRI results are okay then my urologist wants me to have a sacral nerve implant fitted. I am very nervous about this after my last surgery and there are lots of things that need to be done before I go for the surgery.
I have managed to stay out of the hospital now for 2 whole weeks which may not sound like long but for me it’s amazing as I’ve been in a lot this year. I am so grateful for the amazing people I have in my life who help me on my journey. Here are a few photo’s!

11844077_10153421204220071_1085693926_n

Reaction the cannula and/or meds.

11896892_10153432176845071_831911400_n

Reaction the antibiotics.

11720129_10153352334985071_336672787_n 11844098_10153416885470071_897091624_n 11846039_10153421969455071_812104944_n 11855347_10153429589165071_1042782936_n 11857600_10153427992250071_1707498671_n 11855572_10153410454195071_183952962_n 11865113_10153438434920071_1677297798_o 11872896_10153421204165071_1528902636_n 11873983_10153432291090071_616966718_n 11880193_10153433410945071_581667388_n

Thank you for reading,
Love & hugs, Charlie x

Day 30 – A photograph of yourself today + three good things that have happened in the past 30 days.

Standard

Day 30 – A photograph of yourself today + three good things that have happened in the past 30 days.

 Here is the photograph of my today. I haven't been feeling great today so excuse me!

Here is the photograph of me today. I haven’t been feeling great today so excuse me!

1 – I got lots of hospital appointments through, one being for tomorrow!

2 – I received a letter with good news!!!

3 – I’ve managed to keep food down!