Long post about hospitals, appointments and feelings…

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I know I haven’t really posted properly on here in a while so I thought it was time for a bit of an update. So much has happened in the past few months, it’s been a complete whirlwind. There have been highs and there have been lows and I thought I’d share a bit of what has been going on to keep people updated and also on my mission to raise awareness of EDS and other invisible illnesses.
In February I was admitted to hospital for 6 days. I was discharged and able to go home to try and regain some strength to attend the many outpatient appointments that I had coming up. I went to see a rheumatologist who was very kind but admitted that he couldn’t help me and I also managed to go for an MRI small bowel study. I had to drink a large amount of a horrible liquid for the MRI and this caused my already swollen stomach to swell up even more and I was advised to go back to A&E. Me and my amazing Mum got back in the car and made out way back to the hospital that I had only been discharged from the week before.
This admission ended up being a 3 week one and to be honest it was very hard, not just for me but for my amazing family, friends and partner. I had another bowel obstruction and had numerous tests, x-rays etc. I had a nasogastric tube, a narrow bore tube passed into the stomach via the nose, for a while for aspiration of my stomach contents. This was very uncomfortable but it did help me. I had to have a flexible sigmoidoscopy (I think it will still be called that even if I have no colon) and it was extremely uncomfortable and painful. It left us with very confusing results which we are still trying to find answers for. When I get poorly with my digestive tract I find it very difficult to eat and drink so I was kept hydrated with fluids. I had a barium x-ray and I was finally allowed to go home just in time for Easter weekend.
I managed to not be admitted to hospital for the whole of April which was great. I made the most of the good days and rested on the other ones. I had lots of outpatient appointments during this time, one of which was a video cystometrogram. Unfortunately this test confirmed that my bladder isn’t working properly either. When my bladder begins to fill it doesn’t send the signals to my brain which is why I am often left with urinary retention. I have a follow up with my urologist this week to discuss these results further and will share what happens if people want to know.
I had an appointment with my colorectal surgeon and attended physiotherapy. I also travelled to Sheffield to the Ehlers-Danlos Syndrome clinic to meet with geneticists to try and determine which kind of EDS I have. I was asked lots of questions about my symptoms, history, family details and I was physically examined. The geneticist wasn’t sure about the type of EDS I have as I have many overlapping symptoms and I had to be tested for Vascular EDS due to some of my symptoms. I received a phone call the other day saying that it is unlikely that I have the Vascular type as they couldn’t find the gene so that is good news. I was also asked if I would be willing to take part in something called 100,000 genomes which is a project working on sequencing 100,000 DNA codes of patients, leading to better, earlier diagnosis and personalised care, for cancer, rare diseases and infectious diseases. I jumped at the chance and said I would give my consent. Hopefully, through things like this, EDS will be recognised more and people will get earlier diagnosis and treatment. I’ve had other appointments with my pain doctor and gastroenterologist.
Unfortunately in May I got shingles and also my bowel issues flared up again and I was admitted back into hospital. I did get to stay on the ward that I had been on previously so that was good as I felt comfortable knowing the ward and the staff. I had a 48 hour monitor fitted during this stay and currently have a week long heart monitor fitted. This is to see if I can have infusions of something called lignocaine, which is widely used as a local anaesthetic, to help with pain. This admission was another 3 week stay but I tried to remain positive and had amazing support. I came home and nearly stayed home for 2 weeks but was sent back to hospital via ambulance last Monday with unbearable pain. I am back home again fortunately and I intend to stay here! Since coming out I have had another pyhsio session, a tilt table test and an appointment to discuss nerve stimulation. I have more appointments coming up including tomorrow with the specialist pain nurse and Thursday with the urologist.
Times have been hard but I am still standing, just, thanks to the support from the amazing people that I have in my life. If I am honest, I am really struggling at the moment and even just typing this has left my with extreme pain in my hands, arms, shoulders neck and head. It’s so strange how much my life has changed during the past year or so and how much I myself have changed. Gone are the day when deciding what outfit to wear at the weekend was the biggest of my problems. All of that seems so silly when I’m now worrying if I’m going to even be able to get out of bed the next day. I guess this condition has shaped me into a stronger person but I don’t feel strong right now, I feel weak, so very weak. This pain is right to the bone and everything hurts. It’s difficult to move at times, difficult to eat, difficult to be around people but I will never give up. I WILL fight this illness and I WILL come out on top. It’s scary not knowing what the future holds and if I will be able to do the things I’ve always dreamt of doing. At times I get angry and just want to know why certain things have been taken away from me. The things I used to enjoy doing are now just memories, memories I will cherish forever. The dreams I used to have may need to be adjusted slightly. The things I used to do on a daily basis like eating and walking are now often a deep struggle. This condition has taken so much away from me but I’m determined not to let it take away my smile. On a more positive note I have met some amazing people on this journey and our paths may not have crossed if it wasn’t for these conditions. No matter how much pain I am in I will find my strength and carry on.
If you managed to read all this then well done you and thank you so much. I will try to keep you updated with what’s going on.
Love & Hugs, Charlie x

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