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.
I have some great news! Tomorrow I get the keys to a house with an upstairs and downstairs toilet. This will massively help me as I currently live in a top floor apartment with no lift and struggle to get up and down the stairs, especially on a bad day.
I am also seeing my urologist tomorrow to discuss the next steps in his plan to fit me with a sacral nerve stimulator. Neuromodulation can be used to treat both bladder problems and bowel problems at the same time. A small device, which is similar to a pacemaker, is surgically implanted just beneath the skin in the upper buttock. It delivers low amplitude electrical stimulation via a lead to the sacral nerve, usually accessed via the S3 foramen.
First they surgically fit a temporary wire which will be connected to an external battery and worn on a belt for the evaluation period. If the evaluation period is positive then a permanent battery will be surgically placed.
I have not seen my urologist since I received the results of my MRI scans in London and I am not sure if they will influence what happens next with regards to the sacral nerve implant. I will find out more tomorrow!
Hope you are all as well as can be.
Love & Hugs, Charlie xxxx
I’m not ashamed to try and raise some money for my daughter to get the care she deserves to improve her quality of life. I’m not expecting anything from anyone, so please don’t feel obliged or put under any pressure, but if you could at the very least read her story and spread awareness, it would be very much appreciated.
She always thinks of others, does everything she can to help herself and to raise awareness.
She is an inspiration and I’m very proud to call her my daughter xxx
The plan is to help Charlie. Help others through spreading awareness and then help others financially if we are honoured enough to get in that position.
Thank you for reading xxx
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!
Ehlers-Danlos Syndrome Awareness – Classical EDS.
This is a short awareness video about Classical Ehlers-Danlos Syndrome, the causes and signs and symptoms. May is EDS awareness month. Please feel free to share and help raise awareness of EDS!