Update…

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Hey everyone,
Sorry for the lack of posts recently. I’ve had a lot going on recently but I’m going to try and start posting again more frequently. So as you may know, last year I had a sacral nerve stimulator fitted and the trial period proved successful but unfortunately I developed an infection in the wound and the device had to be removed. Since then I have been struggling a lot with infections again and now have a nasty infection which has passed to my kidneys. I was admitted to hospital last week but unfortunately I am still struggling with it. They now know the type of infection so hopefully I can be sorted out with the correct antibiotics. I have my pre-op in a few weeks so that I can hopefully have the permanent implant fitted.
On Friday I had an appointment in Manchester for a small bowel manometry but unfortunately the test couldn’t be carried out due to my naughty stomach playing up. They couldn’t get the catheter to pass from my stomach to my small intestine as it just kept on bouncing off the sides of my stomach, guessing this is due to my stretchy connective tissues. They weren’t happy to keep trying as there is a risk of perforation but I’m hoping my Doctor can think of another way to complete the study. I made the most of my time in Manchester and managed to have a nice time with my friend. I guess sometimes it’s nice to try and escape from reality for a few days, even if I had to take my EDS and other conditions with me.
Hope that you are as pain free as possible and have had a nice weekend!
Love & hugs, Charlie xo

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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You know you have dysautonomia when…

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October is dysautonomia awareness month so I thought I’d make a light-hearted blog post about it…

You know you have dysautonomia when:
1. Having a bath or a shower results in you turning bright red and needing to have a lie down!
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2. You have brain fog so you write things down to remember them, but then you forget where you wrote them because of your brain fog!
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3. Salt is your best friend!
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4. Everyone else is cold and you are sat there sweating excessively!
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5. Or when the cold weather comes and you just turn blue and everyone freaks out!

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6. Fainting is just a daily occurrence!
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7. When you get up to make a drink and your heart thinks you have run a marathon!
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8. Needing to lie down in random places is just the norm now.
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9. You tell people what is wrong with you and they have no idea what you are talking about.
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10. People think your drunk most of the time!

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Not all disabilities are visible…

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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.

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Love & hugs,
Charlie xoxo