My name is Keeley and I have Ehlers-Danlos Syndrome Classical Type with Kyphoscoliotic and Vascular symptom overlap, Im 20 years old and have only recently been diagnosed. From doing this fundraising I wish to emphasize the REALITY of EDS and to make our invisible, visible. The past few years for me have tended to pass in a blur of hospital admissions, blood tests, physiotherapy, hydrotherapy, MRI scans, CT Scans, X-Rays, Ultrasounds, medication, the list goes on. I cant really pin point a specific event but maybe thats just because I dont want to remember. Im not your average 20 year old. School was difficult, I couldnt manage college due to pain levels and not being able to walk more than 20 metres with or without my crutches and I lost the concentration to be able to focus on an open university course from home. Those of us with EDS also get brain fog which is where we become forgetful, confused, struggle to focus and lack mental clarity. I have faced a number of personal challenges over the years but those challenges dwarf in comparison to the effect that EDS has had on me. During my teenage years I was a keen netball player, although I used to break my bones quite a lot I was determined. I loved sports! I also used to model which I really enjoyed. I spent time with friends and did teenage stuff such as girly sleepovers, painting nails, getting my hair done. Unfortunately none of those things were possible by the time I turned 18. It was when I was 18 that my EDS really began to take its toll on me and I noticed a rapid worsening of my joint mobility. My right shoulder has always dislocated ever since I can remember but now I can honestly say to you that every joint in my body, except for my ankles, dislocate several times on a daily basis. When I wake up in the morning I just lie there for a few moments working out which joints are dislocated and which to put back into place first. My spine, hips and knee caps are the ones that cause me the most pain. My kneecaps lack the ligaments and tendons to hold them and so they quite literally float around. It is for this reason that I can no longer commit to plans. People say Im lazy if I turn down an offer to go for a run, go shopping or even just visit a friend. They say Im unreliable and then all of a sudden contact is cut because they think Im not interested. Truth is, I would absolutely LOVE to be able to do those things but I cannot commit to future plans because I dont know whether that one day the plan is arranged for, I will awake in crippling pain and be bed bound. I have no clue what the next ten minutes holds for me, let alone ten hours, days, months, years. EDS is a very unpredictable illness, us sufferers dont know how its going to affect us and when. We have days that are better than others but we have no good days. Our pain scale tends to either be tolerable or intolerable. I actually recently went on holiday with my partner which in itself was a big challenge. It was the first sense of normality I had in months. The holiday itself was beautiful and very relaxing and I really enjoyed myself for the first time since I can remember. It truly was amazing. BUT, the day before returning home I ended up dislocating my left kneecap and had masses of fluid retention turning my leg cold and purple. It was bandaged by the lifeguard and I ended up needing assistance in the airport and had to use a wheelchair through the airport and onto the plane and get to my GP first thing the morning I arrived back in the UK. Its degrading, its embarrassing, its frustrating and its lonely but eventually, you get used to it in a way. You learn to smile through it, sometimes even laugh it off and use your hypermobility as a party trick to others. Some of my friends and family laugh now and joke with me, saying Im a limited edition of Rice Krispies - Snap, Crack, Pop and Crunch which tends to make me giggle. There are many things that people take for granted and I will hold my hands up (and dislocate my shoulder in doing so, haha!) and admit I used to do it too. Its not until your muscles are wasted, youre fatigued, tired and pained to the point you physically cannot walk without mobility aids that you realise. For me, having spent the last two years flitting between having to use a wheelchair, crutches or a walking stick, it was then that I realised how much people take for granted. I miss being able to dance, play netball, run, ride horses and even just simply walk, as well as so much else. Ive accepted it though, there are adaptations and ways that things CAN be made possible even if its not necessarily the way you wanted to do things. I think acceptance of my condition isnt about accepting that things are the way they are and will get worse as time progresses onward and admitting defeat. I thought that way for months when I was struggling for a diagnosis. EDS is such a rare condition that actually not many medical professionals are aware of it. Acceptance to me is accepting that things are the way they are, things will progressively worsen, so I want to do what I can, whilst I can. My motto in life is to make the best of a bad situation as I am a firm believer that every day may not be good, but there is something good in every day. I have a bucket list of things I wish to do in my life and I am slowly but surely ticking them off which I have to say has been absolutely amazing! Next on my bucket list is what I am doing now. Raising awareness by talking about the REALITY of Ehlers-Danlos Syndrome and fundraising. Ehlers-Danlos Support UK is an incredible charity and I am forever thankful for every single person that runs the charity. From the information they provide, support they provide to actually being on the end of the phone should we need anything. I want to do as much as I can, whilst I still can and in doing so I wish to raise money for this incredible charity which, in all honesty, I have absolutely no clue where I would be without it. I know that sounds cliche but its the truth. I choose to shave my head on October 11th 2014 to fundraise for Ehlers-Danlos Support UK to make our invisible, visible. Thank you for reading Keeley. Xxx We think Keeley is super brave and would like to say a huge thank you to her! You can donate to Keeleys challenge here: https://justgiving/Keeley-Adams1
Posted on: Sat, 16 Aug 2014 22:49:25 +0000
Trending Topics
Recently Viewed Topics
© 2015