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 decided to make some bracelets and ribbons to try and spread some awareness of invisible illnesses.
There are 3 styles of ribbon broaches and 2 styles of bracelets.
Ribbons are £2
If you buy 4 you get a 5th one free!
Beaded bracelets are £3
Wool bracelets are £1.50
If you would like to order any then please comment or message me.
Styles may vary slightly from the pictures.
Any donations will help towards my medical costs.
Payments via PayPal ♥ www.gofundme.com/charlieharris
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!
“Joint hypermobility syndrome is a common clinical entity which is much misunderstood, overlooked, misdiagnosed and mistreated. It was first described in the 1960s as a purely musculoskeletal condition due to joint laxity and hypermobility occurring in otherwise healthy individuals. Some four decades later it is now perceived to be a multi-systemic heritable disorder of connective tissue with manifestations occurring far beyond the confines of the locomotor system and with ramifications potentially affecting most, if not all, of the bodily systems in one way or another.
Most authorities in the field find it clinically indistinguishable from the Ehlers-Danlos syndrome – hypermobility type (formerly, EDS type III). In >50% of patients the diagnosis is delayed for ≥10 years. Failure to diagnose and treat the condition correctly results in needless pain and suffering and in many patients to a progressive decline in their quality of life and in some to a loss of independence.”
So I’ve just read Professor Grahame’s above journal and I actually have tears coming down my face. It is so strange to read something and just think “Wow, this describes exactly how I am, how I feel and what has happened to my body”. This has explained so much to me and if you haven’t read it I highly recommend that you do, in fact it would mean a lot to me if you could read and share this to help me in my journey to raise awareness. Professor Grahame is such a fantastic man and his work for those with EDS is just brilliant.
“To dismiss disparate symptoms as ‘illness behaviour’ is, in my view, wrong and does much disservice both to our patients and to our reputation as a profession.”
That just shows how much he genuinely wants to help those with EDS. Professor Grahame you are a wonderful gentleman and thank you so much for your research into EDS and fighting with us!
Hope you’re all having a pain free day.
Love & hugs, Charlie x
1 in 4 people will experience some kind of mental health problem in the course of a year.
Mixed anxiety and depression are the most common mental disorder in Britain.
Women are more likely to have been treated for a mental health problem than men.
10% of children have a mental health problem at any one time.
Depression affects 1 in 5 older people.
Only 1 in 10 prisoners has no mental disorder.
Suicide rates show that British men are three times as likely to die by suicide than British women.
Self-harm statistics for the UK show one of the highest rates in Europe: 400 per 100,000 population.
Over the years mental health has been a very taboo subject with some people stating that it simply “doesn’t exist”. Mental health issues DO exist, it isn’t like Santa Claus or the tooth fairy, these conditions are REAL and are affecting people every day. Just because someone may not understand something doesn’t mean that it doesn’t exist, that’s like me saying I don’t understand physics, it doesn’t make physics any less real.
Mental health problems can range from a worry we may feel during the day to a serious long-term condition. Lots of people who have mental health problems suffer in silence as they are afraid of what other people may think and their reactions, this includes myself. Help me raise awareness of mental illness and show people that mental health issues are REAL. Help make the invisible, visible!
If you are suffering with a mental health condition there is help out there and it is very important to get help. Please never feel alone. There are lots of amazing charities and organisations out there who offer help and support such as: