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!

Holding back

OK so last week was a rough week as you know. But, as always, it passed. Today I went for a run with the goal of beating my personal best. Now to be honest even calling it a personal best makes me chuckle a little because that sounds suspiciously what runners and crazy fit people aim for.

Anyway I did exactly the same run as I did last Monday with the objective of doing it a bit quicker. Before I share my times I would like to reiterate that I am not a runner, the route (5k) is a tough one, full of mud, tree roots, holes made by horse hoofs (perfect for a foot to drop into!), a bloody big hill and quite a few smaller ones. Monday last week I did it in 52.31 today I did it in 49.16. Yes still pitifully slow, pretty sure it wouldn't have taken much longer to walk it,  but still quicker than last week.

However, I could have done it quicker. Did I give it 100%? No I didn't, in fact if I was totally honest I would say I gave it about 80%. There is a big part of me that holds me back when I am running. And it is not my bahooki. It is fear. Yep there I have said it I hold back because I am scared I am going to hurt myself. Now this is ridiculous, I've entered a Spartan for goodness sake, that's just asking to be injured. Thing is I don't mind getting injured in the race, in fact I'm expecting it.

It is also ridiculous because ask me to do cartwheels, summersault on a trampoline, run down a beach with Chloe on my back, play 'dancing on ice' and throw same child around I'll  do it. I'll give 100% effort. I'll not worry about getting injured.

But running, I have the fear. Now I think it is because when I was first diagnosed with hypermobility I was told do not run. Running is not a good idea, you will injure yourself. I think I may have mentioned at the time this was fine with me. But I think it has stuck with me, in the back of my mind I don't want to push myself because it is going to hurt me. I need to get over this.

Now I am a naturally competitive person. Today I set myself the goal to be quicker and I will try using that every time, but will it be enough? I am tempted to join a parkrun but there is also a part of me that doesn't want to be that person hobbling in dead last.

Guess I need to Spartan up!!

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!

Mojo lost......and found!

It has been a little while, I've not blogged because well I've not had much to blog about if I am honest. I had a good two, maybe three weeks of not much training at all. I was ill, it was the school holidays, work was busy, I had stuff to do, like you know going shopping, watching TV all the really important stuff that we do when we are not doing what we should be doing!

With the realisation that I have less than five months to the Spartan and I am still nowhere near ready, I thought I'd best get back to it. Me and the mister had a night out in Glasgow on Saturday and I got up to go to the hotel gym at 8am on Sunday morning - I know check me out! I spend a lot of the day thinking how easy training would be if I could just get up and go downstairs to the gym, then it dawned on me. I can. Well OK not to a nice air-conditioned fancy pants gym. But in my garden I have a bike, I have a skipping rope, I have a trampoline, I have roller skates, I have hula hoops, inside there are more workout DVDs than I can to mention and at the front door (which leads to a whole heap of running options) there are my trainers. I can go downstairs and go straight to the gym, its just a different kind of gym. Unfortunately I doubt I will return to a delicious breakfast buffet but a girl can't get everything.

So Monday I went for a run, Tuesday I did a DIY circuit mash up in the garden then I went for a run. This was a tough run. First off it was hot - don't worry the situation was quickly rectified and we are back to cold and rain. More of a pain was my lower back and right hip being really unstable for the majority of the run. Meaning my muscles, especially my core had to work a whole lot harder to keep everything in place, it was hard going, I am not going to lie I struggled, I really struggled. As I neared home my left hip, obviously not happy with the amount of attention the right one was getting, decided to protest by popping out, thankfully after a little attention and reassurance it was just as important it popped back in - but I was sore for the rest of the day.

Not one to be deterred Wednesday I went for a run, five minutes in and my toe dislocated and would go back in through wiggling alone. As I sat on the pavement putting it back in, I question what I was doing, is it really worth it? Maybe I should just not bother. But I gave myself a good Man The F**k Up talking too, remembered all the people who are a lot worse off than me, all the people who inspire me (this lovely lady for a start http://blog.spartanrace.com/overcoming-obstacles-amanda-sullivan/) and I popped my toe back in, put my trainers back on and did it. I was faster, I pushed myself further, I felt good, I think I can do this! Don't get me wrong, I hurt, I was falling asleep by 8pm, I am still slow but I can and will do it.

May is EDS awareness month - I hope this blog is telling a few more people about EDS and giving a small insight to what it is like (remember I am pretty lucky with my symptoms) take a look for some more info https://www.ehlers-danlos.org/get-involved/may-awareness-month-2014

Sitting down, standing still, moving forward!

So sometimes it hurts to move but more often it hurts more not to move! Last week I had a two days of sitting in one position for long periods of time (work conference) then a day of standing still (PTA fundraiser) and oh my did it take its toll. I am a fidget, I can't help it, it is all part and parcel of HEDS. Sitting still kills me! I am aware that for other people this is extreemly annoying and do try to minimise it, especially in conference type situations. However, by the end of the three days I was in agony. It hurt to move, it hurt to sit still. So rather than run as normal while Chloe was at swimming I went for the rest option and planned to keep it that way. So thank goodness for my mini personal trainer. We made it until about 14.00 untill she could be contained no longer (she had already been swimming that morning) so a bike ride it was. Except my finders were not working and my bike needed a new saddle. Not one to be easily deterred, little miss declared I could run, and she promised not to go too fast! So an hour later, she kept true to her word and I walked most of it, with the occassional run thrown in I felt......so much better. If it hadn't been for her then I would have lazed around and probably still felt rubbish on the Sunday. So moving is the way forward.

I did however get up at 6.30am, when I was staying in a hotel without the sleep terrorist, to go for a run! I feel like I am dedicated :-)

Got really quite excited as my EDS running vest arrived - you will definately be able to spot me in a crowd! Just need to get it back from the little lady now.

 

But for now I'll just keep on moving forward!

Frustrations and fears

Last week I was away with work and missed running. Not just didn't manage to run but actually missed doing it! I may have become one of those people who gets tetchy when they don't exercise......

Mostly I am plodding along and pleased with how things are going but on Sunday my shoulder kept popping out. It blooming hurt and it made me feel sick, the rubbish feeling is nearly done over 48 hours later. I am not sure if it is because I had not done much the week before, because I did a bit of strength stuff the day before or just because. I suspect it is just because.

Now I know that this is going to happen, it is part and parcel of HEDS. It doesn't make it any less frustrating. The pain is, well, a pain as is the general feeling rubbish which goes with it but just now a couple of days being completely out of action is making it worse. I am really enjoying training and not being able to do it is getting me down a bit. I'll be back running tomorrow though :-)

Luckily I had Chloe to keep me on the straight and narrow food wise so didn't just survive on toast!

It has also reminded me of the fear of something dislocating or just having a general flare up on the day of the race or just before. Logically I know there is no point in worrying, if it happens I'll just need to deal with it. I hope that training will make me stronger and flare ups happen less, but this may be wishful thinking......

Making progress

So I am quite enjoying this running lark, don't get me wrong it is still being mixed with a good chunk of walking. On Friday I covered 5k in 50 minutes, now this is not fast but it is a start. My toes went early on so I was pretty proud of myself for pushing through. Yesterday I did 5k in 47.33 really happy to see the time come down. If I can do it in 30 mins by Sept I'll be happy.

I am now running/walking 3 times a week, doing a different workout 3 times a week and having one rest day. And do you know what? I am really enjoying it. Today is an enforced rest day (one of my vertebrae has gone out slightly) and I'm a bit frustrated at not doing anything!

I'm enjoying it so much I've signed up for another run in June a bit more of a fun thing but still with mud and obstacles involved, for our local hospice.

Not listening seems to be working, although it is hard to ignore dislocated toes which at the moment my biggest problem. But food wise it is making a big difference to have everything planned out and just eating what is on the list. Not just to stop eating to much and unnecessarily but to eat well. Today the pain in my back is making my feel sick. All I want is toast but I went ahead and eat my planned lunch as it is what my body needs. I'd still kill for a slice of hot buttered toast though :-)

Back and toes aside I am feeling so much better, already I am experiencing less of the achy kind of pain that is always in the background.

Next week will be tough I am away with work quite a lot but will be packing my trainers and will do what I can!