Hello and welcome to my first blog! 

Thank you for sticking around if you read my home page and I will dive a little deeper into me and my frustrating body. This will be more the physical conditions rather than my autism, although many autistic people have chronic health conditions but that's for a different blog. 

So, where do I begin? 

I suppose the beginning is pretty good. 

Sice I was a child I was clumsy, always injuring myself, I had bladder issues, I would get dizzy, I would bruise really easily, I had stomach issues and more but because Ehlers Danlos Syndrome is genetic it wasn't seen as odd, it was normal within my house really. My dad was a sick clumsy kid so I'm just like him! 

 

Well until I kept getting worse. I was about 18 years old and I suddenly started passing out, it was worrying and helpfully if you are a teenager many doctors think you are being "dramatic". Cheers. 

 

So I ignored it for a few days. I didn't go to college for a week and thought ok maybe this is a bit off. I ended up passing out everytime I stood up and well this freaked my family out a bit more. So we called 111 and they said take her to A&E. 

 

Got to A&E and in true style passed out while signing in. Suddenly they rushed me into a cubicle, took my blood pressure and heart rate, thought the machine was broken, used a new machine, freaked out again and took me into recus. I was hooked up to all sorts of machines and they weren't happy with my heart rate, I scored 230 beats per minute (BPM) laying down. Just so you know your heart rate while resting at 18 years old should be between 60bpm and 100bpm. They gave me IV fluids and kept me in hospital for around 4 days. 

 

I was pretty scared. I'd never been to hospital except at 3 years old due to a nose incident of sticking something up there. I was hooked up to an EEG to check my heart, I had an emergency Echo (an ultrasound of my heart) but still they couldn't work it out. One day they decided to do a poor man's tilt table test, basically a tilt table test bit without the tilting table. So they got me to stand up and measured my heart rate and blood pressure for 10 minutes and sitting down. That showed I had pretty severe POTS (postural orthostatic tachycardia syndrome) and very low blood pressure. I was discharged with a letter saying POTS and to see a cardiologist in a month's time. 

My GP has no idea what POTS was and just printed me a leaflet and I saw the cardiologist who put me on a beta blocker to slow my heart rate. 

The massive issue I had with my beta blocker was that it dragged my blood pressure down even more, I ended up in A&E again after I kept passing out at college and they halved my dose. 

So at first I thought oh that's ok, I will try and get better from my POTS, which at the time seemed easy and I'd be better. Little did I know my body had other ideas. 

So I did all of that and I still wasn't getting better. My blood pressure was still low, heart rate wasn't great and the cardiologist I saw once discharged me. I was passing out at college, I was exhausted and I was so nauseous. 

 

Till one day I passed out on a busy road and was taken in by ambulance once again. I couldn't do it anymore. My body couldn't do it anymore and yet everyone thought I was being lazy that I needed to push myself more when I couldn't lift myself from bed at times. I was crawling to the toilet because if I stood too much I would collapse. 

I was depressed as suddenly my life was very hard. I couldn't continue doing the things I love. It was really hard seeing people from school go to university while I struggled. 

Then I met Mr Red. Mr Red is also disabled, he also has POTS and that's how we met. 

When we started dating I became dangerously ill. I was having seizures and passing out more and more until I passed out head first down the stairs. I ended up in hospital for 2 weeks and they couldn't work it out. That hospital visit will be a full blog by itself. I ended up having dangerously low potassium. Finally they suggested I see a POTS specialist, Dr Gall. Within the POTS UK community he truly is the blessing to POTS. 

I saw Dr Gall and he was incredibly helpful. He started me on new medication for my blood pressure and he also noticed a critical thing that goes hand in hand, Ehlers Danlos Syndrome. He noticed I am incredibly hypermobile along with a huge amount of other symptoms, including stretching skin, stretch marks, chronic pain, chronic fatigue, high palate, rubbish teeth, poor scaring, poor healing and more. They say around 80% of those with EDS have POTS but not everyone with POTS has EDS as Mr Red proves. POTS is much more common that most think, it's just uncommon to hear about. 

So I saw a Rheumatologist who specialises in EDS and within the new 2017 criteria I am now diagnosed with hEDS. 

 Mixed with that I started really struggling with my stomach, I couldn't hold food down at all. I ended up needing IV fluids and IV anti sickness medication. As they linked EDS and my stomach I had a gastric emptying study with a gastroenterologist and diagnosed with Gastroparesis and a slow transit bowel. 

 

Mixed in that time as well I saw a urologist who diagnosed me with bladder urgency and retention and after trying ISC self catheterisation and having lots of tests I am now on the waiting list for a suprapubic catheter (SPC). I also have a prolapsed bladder, another fun part of EDS. 

I also have Severe Asthma. I've had asthma since I was a child but after a medication I was given that I shouldn't have been it's damaged my lungs and now I have severe asthma, which has included trips to A&E in an ambulance and I'm now under a severe asthma clinic on strong inhalers. 

I have many skin issues as well, made worse or more noticeable by having my gallbladder removed. It was full of gallstones and a large polyp and I've got terrible scars from that. I have Hidradenitis suppurativa which can be incredibly painful and difficult to treat and as I have issues with sweating due to my POTS I take medication to help not flare my HS as much. 

I have reactive hypoglycemia, so I get low blood sugar if I eat certain things, I have to test my blood sugar before and after I eat as I can get quite bad hypos (low blood sugar). I have PCOS which is a new diagnosis. I am also waiting for surgery to check for endometriosis. 

I have Hashimotos Thyroiditis hypothyroidism, so my immune system has decided to attack my thyroid. That's been a huge cause of gaining weight along with PCOS even when I could hardly eat. 

 

I am a wheelchair user due to my EDS, I've had several drs who are specialist in EDS tell me I likely will keep getting worse joint wise as the frustrating thing, well one of them, with EDS is unless it's found young it can be hard to stop your joints getting worse. Now there are many with EDS that find physiotherapy work for them, they are able to still work and life full lives but for me that isn't the case. My EDS has made me extremely disabled. I'm a wheelchair user, I need full time care, I need help washing, making meals, a special bed, a wet room, I dislocate daily. I was told to stop physiotherapy due to my joints. It's frustrating but I'm not the every EDS story but I know I'm not alone. So please don't read this and think this will all happen to you and if it has I'm sorry it has. It's frustrating and you are allowed to be frustrated and upset. 

Anyway, this is my physical disabilities as a more in-depth written acknowledgement to them. Thank you for reading and I hope you will read my other blogs!