I wanted to end this on a positive. I want to tell you about
me, and my life outside of Ehlers-Danlos – I am not an illness and I try to
LIVE and not let it get the better of me.
My name is Hanna McKearnen, I’m 21 years old and I’m from
Lytham St Annes. I’m currently living half at University in Ormskirk near
Liverpool with my wonderful friends and half at home in Lytham with my Mum, her
husband Nigel and my cat - Oliver. I am also very close to my Grandparents who have given so much to me over the years and been a massive support to me throughout my illness. I study English Language at University and
have recently completed my first year. Until September I’m working full time in
Cancer Services at Blackpool Victoria Hospital and I love it. I go back to
Ormskirk over the weekends because I miss my friends and my boyfriend too much!
 |
| Nigel, Me and my Mum |
 |
| Me and my boyfriend Sam |
 |
| Me with my Grandma and Granddad |
My biggest achievement is my sky dive that I did for the
Free Kicks Foundation who supported me when I was very poorly. My two dreams
were always to sky dive and to swim with sharks – I’m still getting round to
the latter J If
anyone ever gets the chance to do a sky dive, for charity or otherwise, take my
advice and DO IT! It is absolutely incredible. I remember landing and saying ‘I
want to go back up! Take me back up!!’ I also raised close to £800 for Free
Kicks which is the most important thing!
I’ve had loads of great experiences since I’ve started Uni
and I’m so happy to be just living my life and having fun. It hasn’t been easy,
but my illness hasn’t stopped me from having a good time and achieving the
things I want to achieve. It’s very important to me to be able to do University
and work because it gives me something bigger to focus on and makes me feel
like I’m achieving things. I’m often asked questions about ‘how I manage’ or
have other sick people talk to me about how they’re worried they never will be
able to do these things. If I can do it, so can you J Once upon a time, I was in
just this position – some people tell you ‘things will get better’ and you
accept it and try to think positively but it can never stop you from worrying.
When you’re sick, all you want is to be healthy so you can do all the things
that everyone else does. I got there, my life is obviously still very
difficult, but it IS possible to reach those dreams and goals – don’t let them
go!
I’ve started rock climbing since I’ve been at uni which is
good fun – still a bit afraid of those heights though, but I love it. I got my
own climbing shoes and chalk bag for Christmas this year and it feels so pro
having my own gear!
I love sharing my uni
life with my friends - we have good days out, and good days in. It’s really
good to have such close friends - they’re always there for me. It was obviously
really scary moving to uni with all my ‘extra baggage’ - it’s obviously not
something you can hide when you live with people 24/7 but they’ve all just
taken it in their stride, looked after me and accepted me as I am. They keep me
company, make me teas and hot water bottles when I’m poorly. They’ve driven me
to a&e when my tube broke and they all know how to label check for food I
can have! I’ve been very lucky and I can’t actually imagine my life without
them! We all live in halls together at the moment but we’re moving into a house
in July and I’m really excited to move in and make the place our own! Could not
ask for a better bunch of friends. A lot of people with chronic illnesses worry
about the concept of starting university – I did too. It’s all been a really
positive experience for me.
Since moving to University I’ve also met my boyfriend
Samuel. J
We’ve been together for nearly 9 months and it sounds corny, but they have been
the happiest. I don’t think I’ve ever laughed so much or so often. Sam has
never been phased by my EDS and looks after me so often when I’m poorly. He’s
sat up through the night in a&e, taken care of me when I haven’t been able
to do anything but lie in bed and has cleaned up many a vom/tube leak. He never
complains and he always makes me feel better. We have done so many fun things
together - movie dates, theme parks, go ape and we’ve travelled around. I
bought Sam tickets to Harry Potter World for his birthday and I’m really
looking forward to taking him. He deserves a medal for all he does for me. I
feel so blessed to have him in my life and I could not be happier.
In addition to my sky dive, I’ve taken part in two other
fundraising ventures – I completed a 16 mile ‘red’ cycle route in memory of my
friend Thomas, to raise money for his special school (not all that long after I
dropped my crutches!) The school was also special to me because it was where I
received a lot of my own rehabilitation treatment. Then about 9 months later I
completed 23 miles in honour of Alice Pyne for Over The Wall Children’s camp –
a fantastic charity that runs fun summer camps for children with life
threatening illnesses. This was a tough one! We walked from Coniston to Barrow
and it was just all up-hill! Me and my Auntie Vicki did it together and we
completed it in just under 6 hours. I really enjoy a challenge, and the
training for both events gave me some more goals and positive things to focus
on. I’ll be starting my next fundraising venture very soon – watch this space!
 |
| Me and Nigel cycling in memory of Thomas for Highfurlong School |
 |
| Auntie Vicki and I crossing the finish line of the Coniston to Barrow |
Career wise - It’s always been my goal to work with children
– I’ve wanted to do that since I was about 9 or 10. I did a stint in children’s
nursing but had problems with the course so I switched to English. I think I
would like to work with children doing Speech and Language Therapy, which I
hope to go on to do as a masters after I finish my degree.
I have so many hopes and dreams for the future – the same
ones as everyone else. I want to graduate, have a career, get married, have
kids, a house and go on holiday somewhere nice. I just hope that I am able to
do them all. Obviously my hope for the future is that a cure will be found for
EDS. I know that the chances of ‘getting better’ now are not really there and I
have accepted that.
As you can see my life is not at all, all illness. I hope
that this post shows you that EDS does not have to stop your life – life is
what you make of it and my life is GOOD. I hope my other posts have helped you
understand the impact of Ehlers Danlos Syndrome a little better – if I have
educated just one person, then to me, that is an achievement.
I want to end this post by thanking all the people who have
shared and read my blog. This means more to me than you could know. It has been
read thousands of times all over the world, and that is quite an overwhelming
thought! I have been asked by a few people to carry on blogging, but I’m not
really sure what sort of posts to do. My life is really quite normal when it
boils down to it! If you did have any posts that you want me to do though,
please message me and I would be happy to do them. My email is h.mckearnen@live.co.uk and my twitter
name is @buggalugs. Alternatively you can contact me through my charity
Facebook page – www.facebook.com/teamtubey.
Other thanks go to: Sam, Emma, Hannah, Megan B, Megan P-W,
Dave, Jordan, Laura, Becca, my Mum, Nigel and my wonderful Grandparents – you
all help me so much. I would not be without any of you J
If you would like to donate to any charities supporting
those with EDS there are two I can recommend:
Ehlers-Danlos Support UK - they provide support to those in
the UK with all types of EDS.
P.O.R.T – this charity supports patients with
pseudo-obstruction (dysmotility and gut failure). They are currently raising
funds for a massive research project in London, carried out by the top
professor of EDS and gut problems, Professor Aziz. Professor Aziz diagnosed me
with Ehlers-Danlos Syndrome. The research will look for connections between
severe functional gut disorders like pseudo-obstruction and EDS as many
patients have both these disorders. This research could be absolutely huge. Any
progress in this area is a step closer to my gut functioning again and being
able to live the dream of going to a restaurant and ordering ANYTHING (and
everything!) off the menu!
Thank you again to all of you! J
______________________________________________________________________
A few blogs you might be interested in following:
My friend Jenny: http://ramblingsofajaffacat.blogspot.co.uk/
Jenny has many physical and mental health struggles, and her
blogs are really honest and humbling. She blogs about everything from her
health, projects she finds, beauty, baking, hobbies. She often has guest
bloggers on her page as well. Jenny has been a really good friend to me over
the years and we’ve both followed each other’s journey for many years – pretty much
since the beginning! Jenny is a really great role model and has advocated
tirelessly for those with all manner of problems – both physical and mental.
My friend Molly: http://mollysrollercoaster.blogspot.co.uk/
I don’t really know where to start. Molly has been through
an awful lot and continues to blog about her health as well as life outside of
her health. Molly has suffered complete gut failure, been TPN fed, had a
multi-organ transplant, a cancer diagnosis, been diagnosed with a rare platelet
disorder and more – she continues to fight on. She loves music, and has great
taste! She’s also an advocate for the ‘Live Life then Give Life’ campaign which
encourages people to join the organ donor register. I don’t think I’ve ever
really told her this but I’ve always been so in awe of Molly. I have many sick
friends and you root for all of them but I think for Molly this is so extra so
because she has so many hopes and dreams and I feel like nobody wants them
more, deserves them more or has fought harder for them. She’s interesting both
medically and non-medically and is just a lovely, lovely person so I’m really
sure you’ll enjoy her blog.
Lucy also has type 3 EDS, the same as me. She is severely
affected, TPN fed, in complete gut failure, suffers from severe POTS and is
wheelchair bound. Lucy blogs about her life very honestly, tackling really hard
hitting subjects such as life expectancy and dying. She’s also an avid dog
agility trainer and entered Crufts this year (and won an award!) with her dog
Molly. Another really interesting read and a poignant insight into the harsh
realities of EDS.
No comments:
Post a Comment