Not all disabilities are visible…


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.

Love & hugs,
Charlie xoxo


Sacral Nerve Stimulation Surgery



As you may know I am currently waiting to have sacral nerve stimulation surgery so I thought I would write a post explaining a bit more about the process and how it hopefully will help me!
Due to my Ehlers-Danlos Syndrome I have numerous problems with my bladder and bowel. After previously having tests it was discovered that this could partly be due to a communication problem between my bladder/bowel and my brain. Sacral Neuromodulation Therapy can help to restore normal bladder or bowel function and where successful, it can be a life-changing treatment.
Our brain controls our bodies muscles and movements by sending electrical messages, which are carried by nerves. There are major routes, one of which runs from the brain, along the spinal cord and through the lower back called the sacral area, and they have smaller pathways running off them. Sacral Neuromodulation helps to correct  inappropriate, unwanted or incorrect messages.
The surgery itself is performed in two phases, the evaluation phase and the implant phase.
During the evaluation phase I will have surgery to insert a thin temporary wire near the sacral nerve in my lower back which control the bladder/bowel. The wire will then be connected to a little device which I will have to wear on a belt and this delivers the stimulation to the nerves. This test phase will last a couple of weeks and then I will have an assessment to see if I will benefit from the permanent implant.
If the test phase is successful I will then have another surgery to have the device implanted just beneath my skin in the upper buttock area. A lead is also implanted in the lower back and then connected from the device. The battery usually lasts about 5 years.
If the test phase is unsuccessful then the temporary wire will be removed.
On Wednesday I have another pre-op, this time to see an anaesthetist, to discuss the surgery further as I’m a complicated zebra thanks to EDS! I will try and keep you all updated with the next steps etc.
I hope you have had a lovely bank holiday weekend with as little pain as possible!
Love & hugs,
Charlie xxxx

EDS Fact: Number 57


EDS 57

Spinal deformities are often found in people with EDS/HMS.



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!


Reaction the cannula and/or meds.


Reaction the antibiotics.

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Thank you for reading,
Love & hugs, Charlie x

Hospital appointments.


On Friday I had an appointment at the hospital with a consultant rheumatologist. Before my appointment came through I didn’t know what a rheumatologist was so in a few words the role of a rheumatologist is to diagnose, treat and medically manage patients with arthritis and other rheumatic diseases. These health conditions can affect the joints, bones, muscles and sometimes internal organs.
The consultant I saw was a very nice woman who was honest and told me upfront that she wasn’t an expert in Ehlers-Danlos syndrome but was willing to help me the best I could. She examined my joints, skin etc and decided it would be best that I see a consultant who does specialise in Ehlers-Danlos syndrome. This will mean going to London again but I am confident that I am now on the right path to get help. She also recommended that I try Yoga, Pilates and similar exercises to help strengthen my joints and swimming.
I also received an appointment through for 11th March and in big bold letters I just saw the words GENERAL SURGERY and freaked out a bit. It is with a colo-rectal surgeon but at a different hospital from my previous surgery. Strangely, there was a plastic bag containing a rubber glove and a suppository with instructions to use it before attending my appointment. I must say I think this is the strangest thing I have ever received in the post and this hospital must do things different to the other hospital I attend. I am now feeling nervous but hopeful that I may get some help.

Hope you are all having a pain-free day.
Charlie x


Subtotal Colectomy With Ileorectal Anastomosis.


I have mentioned a few times that in May I underwent surgery to remove my large intestine, also known as the colon. The medical term is a subtotal colectomy with ileorectal anastomosis but I had no idea what this meant so thought I would do a small post about it.
My colon wasn’t working properly so in a bid to make my gastrointestinal tract better I was referred for surgery to get it removed. The colon was removed from the end of the small intestine (ileum) up to the rectum and then joined back together. I guess the surgeons see it as plumbing, you have a piece of pipe which is getting blocked and isn’t doing it’s job so you take the bad part out and join the good parts together. Unfortunately this hasn’t cured me of my gastrointestinal problems but hopefully it has given you a better understanding of how my insides look compared to “normal”.

 This shows what was removed, how my insides looked before and how they look now.

This shows what was removed, how my insides looked before and how they look now.