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!
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.
Today I visited the hospital for some tests that had been ordered by my gastroenterologist. He has referred me for a few tests so I wasn’t sure what to expect. He explained to me that one of the tests I was going to have was to see if my small intestine is sticking together when it gets overfull. He told me that I would have an NG tube fitted and I would purposely be overfilled with gastrograffin. The letter said I was going to have a Barium meal and follow through so I was a bit confused but I turned up at hospital this morning ready for my tests.
My name was called and I was given a lovely hospital gown to wear, you know the one which fastens at the back but has a slit down the middle so people could see your bottom at times. Luckily they gave me a lovely hospital dressing gown to wear over the top. It was a beautiful stripy one and I resembled Andy Pandy. I was led to an area and told that I would have to drink some yummy Barium and then have a number of X-rays to see if there were any strictures in my small intestine. When some of the Barium passed to my rectum I would be allowed to leave and was told it would probably take around 45 minutes.
I slowly sipped at the aniseedy, chalky drink trying my best not to throw it back up. If you’ve not had Barium before imagine someone liquidising some chalk and giving it you to drink. I drank my 2 cups and felt relief as I finished the last bit, that was until the lady told me there was still a bit left for me to drink in the bottle and it turned out it filled half of another cup. After I drank the Barium I had to give it 15-20 minutes and then have an X-ray. I took my book with me so the time went fast. I was called for the first set of X-rays and was told everything was looking good and then sent back to wait another 20 minutes. The second time I was in the X-ray room a little longer. Due to my operation my insides aren’t like a “normal” persons. I had a subtotal colectomy with ileorectal anastomosis. This is the removal of the large intestine from the lowest part of the small intestine (ileum) to the rectum. I will post a handy diagram after this post which shows what a “normal” persons insides look like compared to mine. They were struggling to see where the join between the small intestine and rectum was as apparently it wasn’t like what they had seen before. The gentleman thought that some of the Barium has passed to my rectum but couldn’t be sure. He then came at me with a big glove with a plastic spoon on the end? I thought what on Earth is he going to do with that! He prodded my tummy and took X-rays as he did this. I think this was to try and get a better understanding of where abouts in my body the Barium was. He then asked me to roll over on to my stomach which was painful but I did it. Again he took lots more images and still wasn’t sure so they sent me out again to wait another 20 minutes. This happened a few times and in the end he said he thinks that some of the Barium had gone through but was going to study the images further and write a report. He said that my small intestine was very dilated which makes sense since my diagnosis of Ehlers-Danlos Syndrome.
All in all, it wasn’t the test that I was expecting but hopefully it will get me a bit further on my journey. If you have any questions or want to talk about similar experiences feel free to give me a message.
Merry Christmas Eve Eve!