Chronic illness life hasn't proved itself to be much less challenging despite the added years, mainly due to my number of complex complications. I don't document as much of it anymore, but we still have a lot of hurdles. For example, today I had to sleep all morning (prepped a lot of this blog in advance - organisation is one of my stronger points!) because I spent all afternoon in hospital sedated for doctors to take biopsies of my throat to try see why my swallowing muscles are getting so weak, when they are already pretty sure the results are going to come back as 'it's just Kate's EDS', which means no treatment plan. As per usual, I got in there and I was a 'very complex case' meaning they needed a consultant opinion and my blood pressure dropped to a lot lower than they wanted. A 5/10 minute procedure lasted 2.5 hours in total. Buy hey, all done for now. We, and I say we because it really is my whole family who battle this with me, just try to make the best of each situation and when I can do things, I go for it.
I've been through a whole range of severity with my conditions in the past years, from paralysis to hospitalisation for a month. But, the 'well-er' times, and even now when I'm not great but really am learning how to manage with my own body, I have a bloody great time. I have had experiences, opportunities and learnt things which I never even dreamed I could do. And I really want to celebrate today all the things in these 10 years which I've managed to achieve.
I'm not one to really talk much about my achievements. Yes, I'll promote some of the volunteering and causes I work with, but this is a post I can turn to when I'm struggling and think 'look what I did'. It's not meant to big headed, egocentric, or anything. This one is just for me.
Through a lot of my years with my conditions, I've just had to try 'get through' things. I still have to take each day as it comes, I still have extremely difficult days but now I feel like I have slightly more of a path which I want to pursue. I've found a love for volunteering, a love for art and a continued love for dance. I appreciate little things more, which everyone with a chronic illness will say. It was a good few months ago since I was last able to go for a 'walk' (well, wheel) in my chair in the fresh air and it's beautiful. Spending time with my family, my boyfriend and friends is precious. Life, and time, is precious to me. So, in these 10 years, here are the things I've had the amazing opportunity to do, learn and love.
Volunteering
I now see volunteering as a huge part of who I am and when I got asked the other day what I wanted to do for the rest of my life, the answer was simply 'I want to help people'. My volunteer journey started at a young age where I helped assist dance classes weekly, but really took off when I got poorly. In 2013 I was chosen to be part of the vInspired programme which I can hand on heart say changed my life. I gained confidence, I made a difference, I received a £1,000 scholarship at the end of it and I met my best friend. I then was chosen as one of only 12 in the UK to become a mentor for the programme, but didn't manage to attend many of the sessions because I was so unwell. They all became my family though and that was honestly a life changing experience. My next 'big' volunteering venture came from running Project Parent, which I speak about below, and because of the success I became a mentor for O2ThinkBig. I've also now become a trustee for Prudhoe Community Partnership. In between all these big voluntary opportunities, I volunteer for a number of causes regularly and just generally love helping out. I've completed 2,250 hours of voluntary work now which I've built up throughout the years which I'm pretty proud of.
Running my own projects
The first project I set up was in 2011 and was my own small jewellery and crafts business. I used to go around the local fairs and sell online, but when this got too tiring I cut down on this. To this day, I still craft but on a much smaller scale.
Inspired by this, in 2013 I set up a project called Crafts for ME. I was given a £500 grant and I gave out gift boxes of crafts to people who were poorly with the condition. The idea behind it was that it would give them something to occupy them but also help keep muscle strength through their arms for severe patients. Once the funding ran out, the project closed and I was planning my next idea.
In 2014, Project Parent was founded. Starting with a £300 grant from O2ThinkBig, I gave out 30 gift boxes at Christmas in Newcastle. The next year, I was awarded the top grant of £2,500 so we expanded to 5 hospitals across the UK plus 2 charities which help families who are in & out of hospital. Now, Project Parent is self-funded by the very hard work of myself, my team and our donors. We give around 400 boxes to 6 hospitals a year plus supporting the charity PostPals and involving local community youth groups.
In 2015, my mum and I made up Christmas gift bags for the women at our local inpatient mental health ward. We continued this last year with the help of Danielle, and this year, it's getting bigger. Through selling crafts (which are yet to be revealed) we are hoping to raise enough money to buy everyone in our local children's unit (yes, all 40...) a small filled Christmas gift bag. Only recently I became aware of how isolated our local mental health impatient unit is, despite being so close, so if it goes to plan - we'll see! Continuing with the mental health theme, with the help of 4 incredible girls we started up a community DBT group as the limitations of the mental health services are getting tighter. I ran 4 workshops myself, which was both challenging and so rewarding for me, and the feedback was incredible.
Crazy Activities (usually in the name of charity!)
Linking to my volunteering, I started fundraising. I started off with the Sport Relief Mile then advanced to the Great North Run, which I have now completed 3 times in my wheelchair (and walked/jogged/stumbled along the bit at the end!). I zip-wired across the Tyne bridge for ME North East and then did an amazing indoor skydive for them at a later date as no doctor would sign my off to jump out of an actual plane. I've zip-wired in Scotland with my friends, swam with dolphins, been on a king-swing at Calvert Trust... I'm still a bit of a thrill seeker!
Awards/Achievements
The fact I managed to do my GCSE's was a miracle, as I had about 4 weeks home tutoring and only managed 15mins at a time. I still got amazing results, as I did with my a-levels. My A-levels actually took me 5 years and I did one year of this via online learning (which was documented by The Guardian as it was a new thing at the time!) and most of the other time through self study. I love learning though, so it was amazing. I got offers for the uni's I wanted; Durham, Newcastle + Northumbria but never managed to go because of my health.
Dancing has always been a huge part of my life, which is why giving it up was heartbreaking. But, with an awful lot of hard work, and a lot of adaptations, I managed to get my dance teaching qualification (with 97%!) and get my first job which gave my some incredible opportunities (not everyday you're with Chloe from Dance Moms or Twist + Pulse).
Project Parent won 'Most Inspirational Project of the Year 2016' - O2ThinkBig which was absolutely incredible. My parents represented me in London and it made all the hard work even more appreciated. The next year, one of my good friends nominated me for NTW NHS Positive Impact Awards. That was also so special too and just an amazing night.
Other highlights
There's probably a tonne I'm going to miss out, but from modelling opportunities, holidays, to my first guest speaker appearance I seem to always have something to be excited for. I've met some incredible people, been to some amazing places and done some amazing things.
A thank you
A thank you to those who have been part of this time, whether it was the whole 10 years or just bits of it. Thank you to those who make me smile on my bad days, take me out so I don't miss out on the worlds adventures and who keep believing in me.
A final note
These beads represent every medical appointment, procedure, admission..etc I've had since I became ill. I haven't got my beads for this year or through the last half of 2016 (so I have quite a lot to add!) but I guess this gives you a bit more of an idea of chronic life. Each bead represents a battle I've faced, but one I've got through.
It wasn't the life I had planned, but I have been utterly blessed with opportunities and experiences.
Kate x
'Fall down seven times, get up
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