Isolation

I wanted to do a post about the emotional effects that Ehlers-Danlos Syndrome has on sufferers but I wasn’t too sure how to go about it. I hope I've gone about this ok - it was quite a difficult one to organise and as you can imagine, not an easy one to write! I’m in quite a good place right now, but that hasn’t always been so, and sadly isolation affects many people with EDS as they become housebound, bedbound or hospitalised for long periods of time.

As a teenager, I became very poorly. I had to drop out of school and went from managing 3 hours home tuition a week to being too sick to manage any form of education and often too sick to have visitors. When you spend most of your time being in so much pain you struggle to communicate, you sleep most of the day or spend most of it with your head in the toilet (or sleeping with your head in the toilet – I’ve turned up to hospital before with a toilet seat shaped print around my face… you may laugh) you generally aren’t much company and don’t want people to see you. I started becoming severely ill when I was 13, I became housebound and eventually bedbound, I lost weight, couldn’t walk, couldn’t eat and couldn’t sit up for longer than 5 minutes – I remember my first physio goal as being able to sit on my supportive beanbag for 5 minutes and it was DIFFICULT. I started to hair pull as a coping mechanism for the pain I was in, and as a result I didn’t have very much hair. I didn’t start to rehabilitate until I was 16 – I had to wear splints on my legs as muscle wastage meant they didn’t sit in the correct position to walk in. I wore splints for a further year and started walking a few steps with crutches. I had to use a wheelchair everywhere I went, and I really struggled going out in my wheelchair.

I’d lost touch with pretty much everyone I knew bar a couple of friends who visited once or twice a year – because I was so young, I think most of my friends didn’t really understand what it was like and because I wasn’t really up to seeing anyone that often I guess they just slipped away. For three years I hardly saw anyone except my friend Laura who lived in Chester (about an hour and a half away). We were both only young, but she still came to see me at least once a month, often more. She was really the only person who came to see me, without her I wouldn’t have seen anybody and unfortunately this is the case for many people with EDS. When I was well enough to start going out again, she’s the only person I really trusted enough to push my around in my wheelchair because she’d already seen me in some pretty shocking states and still came back. J I think it probably evened out the amount of times Laura came and I had a trip to the hospital against the amount of times Laura came and I didn’t have a trip to the hospital. Laura and I are still very tight, though our lives are pretty busy these days (we both made it to uni!) we see each other as much as we can and when we don’t we have almost daily essay length messages containing every detail of our lives. I think you could probably trace back the every small daily happening of the last two years of both of our lives through our Facebook inbox.

When I was very poorly I really wanted to go to Blue Planet - I have a weird fascination with sharks. When I was well enough, Laura took me round. It was one of my first outings in my wheelchair.

At Blue Planet they have a shark tunnel and there's a path or a conveyor belt that you can stand on. Laura thought it would be good to go on the conveyor along with me and my wheels. At the end of the belt though there's a dead end with a barrier. Laura couldn't get my chair back off so I had to dive bomb out of it. That was an experience. We also got stuck inside a roller-coaster simulator and had to knock on the doors from the inside to get someone to help us out.

Isolation isn't just sitting on your own all day – it’s missing out on all the things you should be doing from taking exams, getting in trouble and going to prom. I remember being told about all my innocent friends and their drunken antics. I remember taking exams in hospital and weirdly, I remember seeing hospital as a place where I actually saw people. People other than my family. I remember a friend bringing their year book into hospital to show me and it was all ‘do you remember so and so…’ and looking at pictures and realising how much everyone had changed. You live in a different dimension to other people when you’re isolated, hearing about their lives is a bit like celebrities – you know they exist but they aren’t part of your world.

It’s hard to say too much about those three years of isolation, because other than being extremely poorly nothing really happened. I led in bed all day, listened to music, watched TV or looked through magazines. I would bounce from home to hospital and ambulance drivers became familiar faces. I’d wake up in the morning, and if it was a day when my Mum was at work I’d ring my Grandma and she’d come round, make me breakfast if I could manage something, help me have a bath and then I’d put my pyjamas on and get straight back into bed. I had a whole range of aids throughout my house; bath board, shower seat, a special table for my bed and we had a stair lift fitted. For six months before the stair lift came, I couldn’t leave my room – I was taken out by the paramedics a couple of times and I was carried downstairs for bonfire night and I did a sparkler and watched a some of the fireworks.

Being isolated for so long takes quite a hit on your confidence. Before I got really sick I was always quite confident and loud and probably quite annoying. You kind of forget what it’s like to go out every day though and you forget how big social situations work (when I say big social situations I mean, going to school or being out and about and around people). I was quite shy and quiet when I ‘emerged’ again. My Mum once said it was like I’d gone into my room at 13, and when I came out I was 16, but it was still like I was 13, because I hadn’t had that period in between. She also warned my friends that I wasn’t ‘streetwise’ which was really uncool, thanks Mum! It was quite weird to see all my friends were ‘grown up’ – before I got sick the park was the coolest place to hang out… now it was probably the pub or something. When all my friends started university, I was just starting my GCSE’s at college.

When I was 16, I started volunteering to try and build up my confidence. I volunteered at a local charity that offered holidays for sick kids called Donna’s Dream House. The first few weeks I went one day a week for an hour in my wheelchair. I sat on my own sorting through vouchers and doing bits of printing. On my first week I was approached by a lady called Linda who was setting a local project up, and using an office at Donna’s Dream House. She wanted to help young people, with difficulties overcome their problems through meeting each other and volunteering. She asked me if I’d like to get involved and I said yes. I split my time between Donna’s Dream House and ‘The Step-Up Project.’ Linda said the first time she sat with me, I sat there, hardly said a word and looked terrified - I remember deliberating for 10 minutes, building up the nerve to ask for a stapler. As time went on, volunteering and the fantastic people I worked with really helped me build up my confidence. I became more chatty and even wrote a speech about how far I’d come for the launch of The Step-Up Project – unfortunately, rehabilitating didn’t mean I was cured and ironically I was in hospital for the launch! Linda read out my speech instead. From sitting in a wheelchair and not saying a word, I walked the race for life on my crutches and helped organise a funding bid for a group of disadvantaged young people to go to London. We won the funding bid, but again, ironically I was ill and had to bow out of going to London with them. From one hour, one day a week to five full days a week, my life was getting better and I was ready to go to college. At the same time I was very sad I wouldn’t get to spend so much time at Donna’s Dream House, it was a place that had brought so much good into my life. Donna’s Dream House changed me completely – Len Curtis gave me back my confidence, my independence and my life and I can’t thank him enough. My time there patched up those three years of oblivion and I no longer felt like I was running to catch up to my now grown up, 17 year old self.

Race for Life, 2009 that I ran with Linda and the Step-Up Project girls. I was 16 (a week or so off my 17th birthday) and had just had my hair cut short.

What a difference a year makes. I was quite nervous to start college, but very ready for it. A lot of people told me it was too soon, but I really wanted to give it a go – I just wanted to get back on track again. I had a few hiccups the first few days I was there meaning I had to be picked up – I remember arguing with my Mum in the car over her telling me I wasn’t ready for it. But I knew I was, these were just teething problems and sure enough I settled in. For my first year of college I was still rehabilitating, so I was still donning those sparking pink crutches. It didn’t seem to faze most people but I still had to face the question I hated answering - ‘what have you done?’ The awkward thing about it is that I hadn’t done anything and I was often scared that answering the question led to more questions. I got used to it though and made some fantastic friends.

Alex was one friend that I became very close to. He was there for me through some pretty crap times and always made me laugh. I also met Danny at college and he’s been there through it all too – he’s been to see me every admission to Manchester, and often came every day. It was, but shouldn’t have been, a novel experience having close friends that I saw every day and I absolutely loved it. It made my confidence grow even more and at that time, I always thought life just couldn’t get any better J College gave me masses of confidence because it showed me that I was just like everyone else. I felt like I lived in their world again and it made me feel ‘normal’. Often when you’re sick and spend all your day doing nothing you feel so useless. College made me feel like I was achieving something and I loved it. I had a really great support network at college so when I was off, I didn’t fall behind – they didn’t penalise me for being ill or make me feel bad about it as school did. My teachers were all like good friends and they are all such a super bunch! I do miss my college days. I did a year of GCSE’s (gaining eight passes!) and two years of A-Levels.

Me and Alex at college, probably in citizenship not doing any work.

Danny (left) me, Jared (Alex's boyfriend, behind) and Alex when I was in hospital in 2012 - three years after me, Danny and Alex first met :)

Now I’m at University, I’m independent and in a happy relationship. I still have my illness and I always will, but isolated is the last word I’d use to describe my life. I live in a flat with seven girls (and two boys that intrude on us regularly! But they’re ok!!) and I could really not ask for a better bunch. They are like my family, and always look after me and support me away from home. My girls are like my sisters and I’d be a disaster without them! If there is a day when I can’t do much, I’m never on my own and there is never ever a dull moment!

Me and my wonderful boyfriend Sam

This was taken today! My lovely uni family, and Sid (I wish I could tell you he was part of our uni family)

My story has a happy ending to date, but unfortunately, isolation is such a massive part of living with EDS and I don’t think you’d find a single Zebra who hasn’t got a decent amount of experience with it.