Last post - About Hanna.

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.

https://www.ehlers-danlos.org/

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!

http://www.port-charity.org.uk/

Thank you again to all of you! J

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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: http://lucyalexandria.blogspot.co.uk/

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.

30 things about my Ehlers-Danlos...

This is just something I found online, that I thought might be interesting to share :) This is 30 things about my illness that you may or may not know :)

1. The illness I live with is: Ehlers-Danlos Syndrome

2. I was diagnosed with it in the year: 2012

3. But I had symptoms since: Birth

4. The biggest adjustment I’ve had to make is: I haven't really 'adjusted' my life, because I've lived with the same illness for my whole life, so I've never had to really change anything, but the biggest way I have to 'adjust' to every day life is with my gut - feeding, draining, avoiding a lot of foods. 

5. Most people assume: That my illness is 'better' now, when actually my illness has definitely progressed, it's just better managed than when I spent my whole day in bed.

6. The hardest part about mornings are: There isn't time to wait for painkillers to set in or adjust to the morning dizziness I get from sitting/standing up when you have lectures or work to attend. Sometimes I wish the day would just wait for me, to feel a bit more human :)

7. My favourite medical TV show is: I don't really watch that much TV any more since I've been at Uni. I used to watch Holby City quite faithfully though, I think that''s always quite good. Scrubs is really funny, especially when you've worked in the medical profession! :)

8. A gadget I couldn’t live without is: My phone - I can't go a minute without it, and I know it's bad. I just fee like it connects me to the world and without it my Mum thinks I'm dead and I have no idea what everyone had for their lunch!!

9. The hardest part about nights are: My pain and sickness are always worst at nights. In some ways that's better because I don't really have any plans in the night other than sleep. But sleep is important to help me function in the day time. I have so many sleepless nights, not because I'm not tired (I'm one of those people who can sleep on a chickens lip!) but just because I feel so poorly during the night.

10. Each day I take __ pills. I don't even know if my brain is functional enough to count them all. They fluctuate a lot and I have some that I take as and when. Some I take every day because I have to, and others I take according to how much pain I'm in or how sick I feel. Around 25-30 last time I counted. 

11. Regarding alternative treatments I: have tried them all probably - special teas, herbal supplements, crystals, reiki, accupuncture, hypnotherapy. If they work for some people that's great :) Accupuncture gave me a little help but not really much different.

12. If I had to choose between an invisible illness or visible I would choose: invisible! a lot of people find it irritating when people say 'oh you don't look sick' or 'oh you're looking well' but largely I'd rather them say that than 'oh, you're looking rough.' I don't want to look rough! On the other hand, when doctors tell me 'you look well' when I feel rough and want them to do something to make me better, this annoys me because it usually means they're trying to find an excuse not to do anything and as a result I carry on feeling like crap. Such is the case now with my feeding tube being broken! I don't care how well I look - it needs fixing! I think it's easier to tell people about it in your own time, when it's invisible. As quite a private person I don't always want people to know straight away. When it's visible, it's the Elephant in the room to the other people until I explain. When it's invisible, I only notice the Elephant myself, and as long as he behaves himself that's ok.

13. Regarding working and career: I'm currently working in administration at my local hospital over the summer to cover uni bills for next year. I'm studying an English Language Degree at the moment and want to go on to do speech and language therapy. My illness doesn't stop me though it makes it very difficult, exhausting and painful sometimes. It's important for me to try my best at these things as much as I can :)

14. People would be surprised to know: Before I fell extremely poorly as a teenager, things like skydiving, swimming with sharks, fast rides, living independently were always things I would have feared. When I fell ill, I watched Jack Osbourne: Adrenaline Junkie a lot and he did loads a lot with people who had problems in their lives and he'd also had a lot of problems himself. It inspired me to sort of build some really big aims and given my situation at the time I found this longing to do all these big exciting things. If you know me now, other than being a bit of a pussy with heights (which I really want to get over!) I'm more of an adrenaline junkie.

15. The hardest thing to accept about my new reality has been: I don't really have a new reality, but I suppose since diagnosis... that EDS is incurable? It wasn't too hard too accept because since I'd been ill for so long, I never expected it to be anything with an easy fix. For the last 5 or 6 years I've sort of felt that I have what I have - whatever will be, is how it will be.

16. Something I never thought I could do with my illness that I did was: talk about it to people? I always used to tell people I'd just broken my leg or something. I'm better at talking about it now. As a child I HATED my friends knowing that I was different. Like most children I just wanted to fit in. An old lady down the road 'outted me' to my friends at the park when I was having a water fight by saying 'How are you now? I know you're quite poorly' and she often asked my friends how I was even before that, and most of them didn't really know what was happening and I didn't want them to. So I'm much more open about it these days, though I still worry about how I'll be recieved.

17. The commercials about my illness: Like posters? They all say EDS is about being bendy and it just isn't. A lot of people with type three 'only' suffer with their joints - still pretty nasty and requires surgery and intense physiotherapy but for someone who suffers so severely with an impaired GI tract, it's really frustrating when you tell people 'I have EDS' and they Google it and all they get is information about dislocations.

18. Something I really miss doing since I was diagnosed is: I do all the same things I did since before I was diagnosed :) That's the way genetic illnesses work - you don't just get sick with a diagnosis - a diagnosis brings you both a sentence, and help!

19. It was really hard to have to give up: Giving up all the active things when I was a kid. I always felt like I was admitting defeat when I took notes in to skip P.E, and truth be told I didn't always give them in, because it was my favourite. I loved playing basketball several times a week and it broke my heart to have to stop.

20. A new hobby I have taken up since my diagnosis is: Sewing! I run my own small charity, making different accessories for children and adults with medical problems and I love it :) I made a few 'wiggly bags'  (to protect Hickman lines)- before I had my own tube fitted, and then I realised the importance and need for it all when I had my feeding tube fitted and so myself and my friend Nada, expanded it into a charity called Team Tubey.

21. If I could have one day of feeling normal I would: Go out to a restaurant and just pick ANYTHING I wanted off the menu. I could read all of it an eat anything :)

22. My illness has taught me: Not to take things for granted. Everything is so beautiful when you are taught just how precious it is. When you have so much taken away from you, you have a great appreciation for everything you do have and the magic of life is multiplied :)

23. Want to know a secret? One thing people say that gets under my skin is: When people tell me I can't or shouldn't do something. When people try to tell me what's best. If I ask for advice then I don't mind but 'your health comes first' is probably the biggest pet peeve of mine. My life comes first - that's my health, education, social time, work, exercise etc. Sometimes working makes me ill, probably even exhausts me into hospital - but that's my decision to make. If I spend all my time keeping myself well by not living my life, I have to ask you what the point is in that?

24. But I love it when people: Appreciate all the things I'm doing DESPITE my illness. Because then I know I'm winning and it's not beating me.

25. My favourite motto, scripture, quote that gets me through tough times is: Oh gosh. There's so many over-used awful cheesy quotes out there. There's a lyric from a My Favorite Highway song called 'Nothing's Bigger Than Love' - the whole song speaks to me, but I use the line 'If there's a hole in your heart, you've got to pull it together' quite a lot. I really like it :)

26. When someone is diagnosed I’d like to tell them: Hang in there. A diagnosis doesn't cure you and it doesn't take the pain away but there's a good chance things will get a little better now you know what you're dealing with. Having EDS doesn't change anything :) Set yourself some goals and embrace your achievements :)

27. Something that has surprised me about living with an illness is: I feel exactly the same as everyone else. I know everyone else doesn't feel pain, or sickness like me and I know they don't have to work their lives around something like Ehlers-Danlos, but they watch the same TV shows, read the same books, have hobbies like mine, have hopes and dreams for the future. They have little pet peeves just like I do, they get upset or happy or laugh at things just the same :) I don't feel any different.

28. The nicest thing someone did for me when I wasn’t feeling well was: Aw so many lovely things. It always feels really lovely when someone visits you in hospitals :) Hospitals are really grim places and it's not that much fun coming to visit but it's always great fun. Becca once knocked on my door and drove off but left some flowers on my doorstep. I won't forget that :) People have brought me some lovely things while I've been ill - Danny brought me a really beautiful Disney Mulan doll, because I love Mulan. Sam always hides messages for me to find when I'm ill, which is cute, and buys me flowers :) When I was really ill Sarah wrote to me every couple of weeks without expecting a letter in return and it brightened my day so much just to know someone was thinking of me, and would take the time out of their day to do that. My friends make me cups of tea and hot water bottles and it makes me feel so loved <3 I can't pick just one thing because I've had so many :) It's so nice to get a hug off someone when I'm not feeling well - I think that's one of the nicest things you can do for someone to show them you care.

29. I’m involved with Ehlers Danlos Awareness Month because: Awareness is so important to get EDS recognised for what it really is. There's many more common illnesses out there that everyone knows exist. Most people have never heard of EDS and those that have don't understand the half of it.

30. The fact that you read this list makes me feel: Positive - If you've learned anything from it or found it interesting then I've achieved what I wanted to :)

17 EDS-isms

I really enjoy a good GIF - I felt like I couldn't make it through this awareness month without just sliding them in. These are the observations and perspectives of an EDS-er. I tried to make this one moderately amusing. But it's probably just a bit dark and disturbing.

1 ) Poker face is a reflex to: my knee popping out, vomit entering my mouth, the room doing an unexpected loop-the-loop.

2) People say stupid things and you realise, you’re normal and they aren’t.

3) Non-clinical Tourette’s syndrome is secondary to living in an environment polluted by stupid people who say stupid things. It’s chronic and debilitating.

4) Waking up feeling good takes me by surprise sometimes, and I have to go back to sleep for 5 minutes to make sure, this is indeed real life. It's like waking up and realising Santa has been. How sad.

5) Night times are annoying. You go to bed feeling fine and you wake up in an hour and your head is straight in the toilet. Sometimes you go to bed feeling awful and take a wonderful tablet and you wake up after a ten hour sleep feeling buzzing. I am so confused as to how or why this happens.

6) Powdered tablets like domperidone, cyclizine or codeine remain on your tongue after they’ve been swallowed. If you stick your tongue out it’s there, all white and you can take as many drinks as you like, it’s not going anywhere - your head fizzes with such a disturbance.

7) I agree to do things that I know will hurt/I can’t do/I’ll regret. ‘Do you want to come to an all you can eat buffet with us?’ ‘AWESOME!!!’ ………… ‘No I can’t eat any of that, I’ll just have a tap water, thanks.’

8) Questions come when you don’t expect them and you can’t prepare answers. ‘Why do you have a feeding tube?’

9) Sometimes it feels like there’s no short answer to EDS related questions. 

10) Hindsight. I’ve discovered the difference between knee jerk reactions and hindsight is VAST. Not everyone needs to know I just vomited a little or that my shoulder popped right out. No matter how much it hurts!

11) I can't find an appropriate response to sympathy. Even though it's often appreciated.

12) Some people are really self-absorbed and like to tell you how much your illness inconveniences their own life. I wouldn’t believe it had it not happened to me. ‘I’m really disappointed you’re ill today, now my whole day is ruined.’ I actually felt bad!

.

13) How many GP receptionists does it take to change a light bulb? Sorry if anyone out there is a GP receptionist; mine are horrendous. They can't ever solve the simplest of queries. I’ve had other people’s prescriptions and other people’s test results.

14) Having long bendy arms means you can apply sun cream to your entire back all by yourself.

15) There is never a time, a place or an environment that I can’t sleep in. Sleeping is my natural state.

16) Waiting rooms are places where time either goes too quickly or too slowly depending on what your appointment is. But they’re never the same speed as real life. You realise you wait half your life for a diagnosis so that you can spend even longer waiting for due necessities.

17) There is no cure for EDS!!! But that will never stop people offering you magic/crystals/diets.

 

Interview with my Mum

I wanted to do a post about my childhood, but I didn't know how to go about it, since I can't remember my very early years and a lot of it was very confusing to me. My boyfriend suggested that I do an interview with my Mum about her experience of being a parent of a child, and young adult with Ehlers-Danlos Syndrome.

When did you first notice there might be something wrong with me?

When you were first born. You were a very sicky baby. I had to have you propped up all the time especially after a feed to stop you from bringing it back up. Had you in a bib all the time because you were so sick.

Did you think it was anything more at the time?

At the time I just thought you were just a sickly baby as I was told that by the health visitors. They said it was common in young babies. When you started on solids it did ease a bit.

How was I different to other children?

As a toddler you seemed to be a "fussy eater" took a lot of persuading and distracting to get you to eat.

Was I picky or reluctant to eat?

Both really. We had to try you with lots of different foods throughout the day to get you to eat something. Most days you didn't eat enough so we carried on giving you bottles of milk to try to ensure you got enough nutrition in the day. I remember you sitting in your high chair distracting you with toys spooning food in while you were occupied.

Did I have any other health problems as a child, other than the sickness and food issues?

When you were 2 I was helping you up off the floor and your elbow popped out. We took you to A & E and you had dislocated your elbow. Also as a child you didn't like being left anywhere. For instance nursery took a long time for you to settle I had to stay with you for a month or so. You seemed anxious. When I look back I guess if you weren’t feeling well you didn't want to be left. Also when you were born you had to have your feet strapped up because they weren't in the right position.

Do you think my schools handled me well and do you think it would have been handled better had I had a diagnosis sooner?

Yes absolutely it would have been handled differently had you been diagnosed. That could also be said of the way I handled things too had I known. The doctors kept saying it was down to anxiety and I had to be firm with you. Very difficult as a parent. You just trust the doctors at the time and take their advice. Primary school were very firm with you saying you had to stay in class when you said you weren’t well. Secondary school handled it better. They asked you what they could do to help. We still didn't have a diagnosis at this stage though and in the end you became too ill to go to school.

How was I dealt with as a young child when you took me to doctors with the problems that I had?

Difficult question because at the time I always thought they knew best so I took their advice. Looking back I think they were as clueless as we were.

Do you think they did enough?

No, they could have done so much more. Having being discharged from Blackpool Victoria when they said you had ME and you would get better and "grow out of it". I dread to think where we would be today if we had just left it there and not pushed further for answers and got referrals elsewhere. I have to say though, Wythenshawe hospital have been very supportive, in particular, Professor Whorewell and in recent ears Dr Jones and his team. They have no always had the answers but they have been very caring and supportive. I don't think we would be where we are today without them.

Do you think doctors need to be better educated on Ehlers Danlos Syndrome?

Most definitely without a doubt. Even now with us and for you there is no local help or support. We still have very limited support. It is very difficult to know who to turn to for the best.

How did you feel when they diagnosed me with Ehlers Danlos Syndrome? Were you sad because I had something incurable, or were you just relieved to get a diagnosis?

That day when we came out from the consultant when they diagnosed you is very clear in my mind. I burst into tears with being overwhelmed with it. Finally after all the years of battling for answers we finally had answers but it was also very scary as we didn't know what it really meant or what the way forward was. I think it was a relief to think that finally someone cared and believed you and knew what was wrong. I remember asking him if he was sure as I didn't quite believe it myself that we had a diagnosis. In my mind now it still doesn't feel like its incurable we still hope that someday soon they will find a cure. But at least for now it’s more manageable than it’s ever been and your quality of life is better than it has been. Every day I look forward to that phone call to hear the excitement in your voice when you tell me about your good days and what fun you have had achieving something new that we thought a few years ago might not happen. These are everyday normal events for parents with healthy children but for us as a family every good day is treasured and another milestone. But at the same time I dread the phone call when it’s a "bad day". You’re feeling too poorly to do anything. Or another issue like right now where your feeding tube is broken and we are in yet another battle with the hospitals trying to get it fixed.... a month we have been told! How crazy is that for Hanna relies on the feeding tube every day!

What was the hardest part about having a sick child?

Seing your child suffer and wasting away and feeling helpless to make you better.

Did you feel different to other parents because your child was different?

Yes so much so. It was heart breaking seeing other children doing the day to day things that children do but you couldn't do those things.

What sort of things?

Going to school, having friends, eating normally, playing out and having fun, smiling, the list is endless. One memory sticks strongly in my mind – end of school proms. You crawled to the front door to wave your friends off in the limousine that was taking them to the proms, too ill and weak to join them. Such a sad day.

What was it like, when I was a teenager and I was bedbound and in hospital all the time?

So very, very sad, I just can't put into words how I felt. People used to say to me regularly how do you cope? You just have to. When I look back I don't know how I did. You just hope that the next day is going to be better than the last.

When I was very poorly as a teenager did you believe I would get ‘better’ or did you think I would always be disabled and bedbound?

I 100% thought you would get better. You have to believe that.

Were you worried when I started college after I had been away from normality for so long?

Yes that was a huge worry. I watched the clock each day waiting till it was home time to find out if you had been ok that day. Some days I thought you had gone back too soon when you had a lapse. But I am pleased to say now that you proved me wrong and didn't give up.

Do you think you were more of a protective parent because I was ill?

That’s a massive yes, you have to be and that feeling doesn't go away. I still feel like that now even though you have left home and moved away. I know I do your head in with my texting and phone calls and looking at Facebook to find out how you are. My first thoughts when I wake up are ‘I wonder what sort of a night you have had’ and ‘are you going to wake up on a "good day” today’ and ‘are you getting enough nutrition throughout the day’. Had you been healthy things would have been different definitely.

How did you find it when I left for University?

Very difficult. I still do. It’s hard to let go when you have looked after your sick child for so long and they have been so dependent on you to look after them. Suddenly they have to look after themselves. It’s a constant worry. I have had to drive over a few times because you have been so poorly and once was in the middle of the night.

What are your hopes for me for the future?

Wow so many - the main one is that they find a cure and you make a complete recovery. To achieve your dreams, to complete your education and achieve the career you want and to be happy.

You’re quite a feisty Mum, some doctors have told me that you’re a bit scary. You’ve told a few of them off – any tips for other Mums or sick people who might be battling?

I have had to be. Just don’t give up. Push push, push all the way I can’t stress that enough. I know I've probably got a reputation. .. "it’s that woman again" but I don't care. From our experience sitting quiet and waiting for answers gets you nowhere. If you ring and they don’t call you back ring and ring again.

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.