Another year gone by.....

Today I turn 36. Yep I am officially on my way to 40 and it feels great! Now in the grand scheme of things 36 is not really very old, I'd go so far as to say it's pretty youthful. Obviously in my head I am still around about 23 :-)

I am genuinely happy to be heading for my forties because I am doing so fit (well maybe not fit but getting there), active, healthy, managing HEDS in the most without medication. Something that when I was 17 was not a given. I think I have mentioned on here before when I was first diagnosed I was told there was a good chance that when I was in my thirties I would struggle to walk, the word wheelchair was used......

In my late teens and early twenties I relied a fair bit on painkillers which resulted in stomach issues.

In my thirties I feel fitter and stronger than ever. I have a huge amount to be grateful for I have an awesome family, the best daughter (even if she is a little nuts), brilliant friends, a great job, in the grand scheme of things I am healthy. Yeah I have bad days where everything hurts but I also have days where I can run like the wind, ok, ok that is a large exaggeration but I can move at a pace that is faster than walking and for me that rocks.

This week came the sad news that #Stephensstory had come to end. But my goodness what an inspirational man. And do you know what his story hasn't come to an end, his story will live on, it will continue to inspire, to give hope, it will no doubt save lives.

So yes I am getting older and for that I am thankful. Let us stop worrying about wrinkles, grey hair, things going south and let us celebrate the life we have lived and the life we have to come. Take a look in the mirror - you are awesome!

Trails and toast

I am a pretty much a glass half full type of girl. I like to be positive, up beat, enthusiastic, to the point of being annoying some may suggest. I don't like to sound like I am moaning, I know there are plenty people who are worse off than me. So it is hard for me to admit when the going get tough but the point of this blog is to raise awareness of EDS hypermobility so I guess I need to be honest too. To admit defeat even. Don't panic I'm not giving up. 

I had a great weekend down at Mum's, although I didn't do any proper training, thanks to the mini personal trainer it was non-stop and I was pleased to still be able to show 'em how it is done on a trampoline! we went to Whinlatter (which I would highly recommend) and walked, ran, jumped and played all day. We had a great time and I kept food in check!

Bank holiday Monday I got up, went out and ran (well with some walking thrown in) 5k, I felt great. it was a really good trail run, along the river with some pretty steep hills thrown in too. I love trails! Toe dislocated for the first 1k or so and my rib popped a bit but in the grand scheme of things I felt great. Went out for lunch made good food choices, I felt positive, strong and ready to take on the Spartan challenge.

Tuesday started OK, I had already decided I would have an easy day exercise wise. Food wise I did fine, but as the day went on I got tired, really tired. Now I am mostly tired, I blame the 5 year old sleep terrorist. But this was like that heavy cloud that comes down and makes you feel a bit like you are walking through syrup, mmmm syrup. Anyway that fog that makes it hard to concentrate, to think and certainly to do anything energetic!

By Tuesday night I was shattered and I hurt - everywhere. Now there are many parts of EDS that I dislike but I think for me this is the worst. Dislocations are horrible but you can say OK I dislocated by *insert body part here* and people understand. But it is hard to explain the severity of the hurt when you just hurt everywhere. I think the only thing I can compare it to is flu, possibly even man flu! Everything aches and stiffens up. Sitting still is agony. Moving is too much of an effort. My hips gave way as I stood up. I was in a proper grump with myself. My hands turned into claws, and while it was funny when it happened in Friends......

Wednesday I resorted to painkillers and toast a sure sign that I am sore! Food was carbilicious rather than nutritious. The pain (and then the painkillers) makes me feel sick. Thank goodness for computers because when I tried to write a hand written note I was very nearly reduced to tears. However, if you had passed me on the street you would not have known anything was wrong - I looked fine. Not particularly glamorous but fine. And I think that makes it so hard to admit how tough it can be because you look OK, but all you want to do is curl up in a ball and have a good cry. Of course, life goes on. I work, I have a family, I can't just curl up in a darkened room until it passes. So there I've said it out loud, it hurt, it was hard, I hate it, it makes me want to cry. Maybe I need to say it more and stop trying to fight it but I probably wont.

Happily it hasn't lasted long and today (Thursday) I feel loads better. Tomorrow I will run. And I'll smile because as tough as it gets on my good days I can conquer the world, as long as I can walk some of the way!

Me

So where to start, I am a pretty normal 35 year old working Mum. I'm a little pudgier and a little squishier than I'd like. I don't have enough hours in the day or cash in bank but on the whole I'm fairly happy with my lot.

I also consider myself to be very lucky, I have a lovely husband (don't tell him I said that though) and a gorgeous daughter (C) who means the world to me.

I am also not in a wheelchair. This may seem like a strange thing to say, but at 17 I was told there was a good chance I would be in a wheelchair by the time I was 30. So I am very grateful that I can still run around after C. I was also very lucky to be diagnosed with EDS Hybermobility fairly quickly, after a couple of years of my GP dismissing my chronic pain as growing pains. I was also very lucky to be referred straight away to a great physio who encouraged me to build my strength and use exercise to manage my condition as best as I can. I am also very lucky that I do not have it as bad as a lot of people and have a lot of good days that make me forget the bad days.

So I hear you all ask, what on earth am I talking about?

Hypermobile Ehlers-Danlos Syndrome, sounds fancy huh? There is a bit of variation in terms of symptoms and severity between people but this is the general gist:

* Hypermobility with the joints having a wider range of movement than usual.
* Loose, unstable joints that can lead to dislocations and subluxations.
* Joint pain and fatigue.
* Easy bruising.
* Gastrointestinal dysfunction.
* POTS (postural orthostatic tachycardia syndrome) causing fast heart rate, dizziness and fainting.
* Mitral valve prolapse, a heart valve abnormality which is usually only mild in HEDS.
* Uterine, rectal or bladder prolapse.
* Urinary dysfunction.
* Varicose veins.

Please visit http://www.ehlers-danlos.org/ for more information (I have pinched this from there, I'm sure they will not mind!)

I am pretty sure C has it as well, although she has not been officially diagnosed as yet. She is a big part of why I am doing this. Yeah it sucks, especially the tiredness (oh and the pain!) but it is also pretty cool to still be able to do the splits at 35 right? I want her to think she can do anything, not to be afraid, to be strong and healthy. In the world that we live in which is so obsessed about being skinny to know that skinny isn't important. That being happy, healthy, fit, kind, energetic and brave is what is important.

So here I am about to sign up to the spartan sprint (a 5k obstacle course), I hope to raise some awareness, hopefully raise some money but most of all I want to show myself I can do it. It will be a slow process getting fit and strong enough, I hope you will stick with me through the next 8 months - I am going to be totally honest about it, but I will try very hard not to moan when I can't train because my knee has popped out!

Thanks for reading and remember just because someone doesn't look ill doesn't mean they are not in pain.