Tuesday 21 January 2014

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.

12 comments:

  1. Looking forward to reading your blog, T! x

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  2. All the very best to you. Inspirational woman that I am proud to know even a little.

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  3. Good for you, raising awareness. As you know, my teen son has some hyper mobility I also think little A May have it to a degree too. You know you have my support all the way xxx

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  4. Yay Tamsin well done you my lovely xxx

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  5. Good luck. I understand a little of what you go through daily I have RA and hypermobility and a dear friends of mine has EDS. Not much fun at all but glad to see you are doing so well and hoping to raise some money for such a fabulous cause.

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