Ellie's World

...a little place for big thoughts...

Showing posts with label Ehlers Danlos Syndrome. Show all posts
Showing posts with label Ehlers Danlos Syndrome. Show all posts

Tuesday, 25 May 2010

Eddie Izzard gets me through


So here's a photo of my amazing sister (left) and me wearing the EDS shirt after the Hull 10k (I managed to borrow a USB cable from one of the 2nd year boys. A mega day I won't forget in a hurry.
Frankie Boyle just said something funny on Mock The Week: "Do you mind if I leave early? I have to pick up the kids...before their parents arrive". Haha - classic. I have been craving comedy this week, watching Eddie Izzard DVDs to amuse me on an evening.
It's been a funny start to the week (and not ha-ha funny, apart from where I injected it with comedy) with crappy lessons and the inevitable dread of the sheer volume of work we have to complete within a week and a half, it's been a bit of a downer. I can't really even look forward to going back to Bristol yet because I have a mega long drive ahead of me. It won't be until I am driving past Cheltenham that I will start to get excited.
Even worse, our Project Manager (aged 18) was dumped by his girlfriend and has been mentally elsewhere for ages now, deciding getting hammered before working together was a good idea (annoying). He keeps saying he wanted kids with her and marriage more than anything and I said "you're only 18!" and he was resolute so I said "it's a lesson in life then - be more independent, you're not going to be with someone from day 1 to the end of your life" - so Jammy slated me for being negative. I didn't think that was negative, my mum taught me that (admittedly it sounded a little bleak to me too at first); with a little thought, I think it is a massively important piece of advice. You should be independent - doesn't mean you can't love the people with you when they are and appreciate every minute, it just means when they're gone you're not left completely lost. Maybe I go too far the other way, and am fiercely independent (the poor bf) but I think if you invest 100% in someone you can still be independent and realistic. I don't think that these are mutually exclusive.
Anyway, Day 28 of the No Sugar Challenge (2 days left) - I still can't decide if I am going to gorge on maltesers or just keep going and see how long I can go.
Day 18 of the countdown (can't really enjoy this now we have so much work)

I made a promise today, my friend Sammy is applying to do the law conversion in Bristol and I said I'd move in with her if she's accepted. Fingers crossed I actually earn enough...

Wednesday, 5 May 2010

tattoo your name across my heart



I have had the most amazing day :) (photo from another amazing day last year walking RSPCA dogs). I haven't mentioned (I don't think) but I am running the Hull 10k for EDS Support Group on May 23rd and I took my sponsorship form to work today. I was really embarrassed about asking people and I didn't want them to feel they had to sponsor me but Dan, my mentor, said to bring it to him first and he'd put a big amount down and everyone else would follow. He was right! Everyone sponsored me - the biggest being £20 and that wasn't even Dan's! There was hardly anyone in the office and I've already raised £163.20 :o) My family have sponsorship forms too and they're going to collect some in their prospective cities too so I am hoping in a couple of weeks I'll have a fair whack :o) I am really excited to get my EDS support group T-shirt too :o) I am going to wear it on every run I go on, every mile I ever tread...unless it's sweaty from the last workout, obviously.

So tonight I needed to pop to Tesco for bread; I've never mentioned before but I am a bit special (haha, no seriously) and am intolerant to several foods which are fairly central to the western world's diet: wheat, corn, oats, yeast, diary, chocolate, sugar. I have to get special bread (rye or spelt - it has some wheat and yeast but I only need to avoid it not completely cut it out if I can't) and I asked the bakery woman because there wasn't any of the usual bread I got. She was totally brilliant and took me to the selection of Polish breads which have less wheat, asking if I was allergic or if it was intolerance and she told me the aisle the totally wheat free stuff was (which I already knew, but she was so thorough!)She must've spent at least 5 minutes with me. Honestly, I was unbelievably knocked off my feet; it's just not what you expect from Tesco. I said "thank you so much, I really appreciate your help" and I hope she took that genuinely because I am still delighted :o) I'm trying the Polish bread, btw.

So, bouyed on by this fulfilling and Disney-style day I've had, I feel more ready to tell you what has been on my mind recently: I have a few things wrong with me (who hasn't?) such as being partially deaf and food intolerances, but recently I was diagnosed with something new (well, new to me). I've hesitated to mention it because I've not really told anyone in my day-to-day life, but it probably won't come as much of a shock from my blogs: I've Type 3 EDS. It's mild, but a very close relative I love to bits has a severe form and it's all been a bit of an emotional rollercoaster. I tend to be ashamed of things like this, embarrassed at the focus. I don't like people to look at me and see me a certain way. I hate to show weakness or, dare I say it, imperfectness (I think I just created a word). With EDS I feel a bit of a fraud because I have it in a mild form and so just don't suffer like my relative does, but on the upside it means I can do things like the Hull 10k. In keeping with this amazing day, I told my relative how I felt and they wrote this response to me which blew me away a little bit (I should've put a warning on how bluebirds and singing this was going to be):
"Well, Severety (sp?) isnt the issue, it's a thing that definately affects your life, you have to be super careful not to hurt yourself, you have to be informed without panicing yourself about the what if's, you have a close family member who is very sick with the same illness which is upsetting and scary at the same time... anyone with their head on straight can see that's a burden to bear and I'm super proud of you that you are channeling your feelings about it all into such a possitive and constructive path. I was honestly in abit of a panic when you got diagnosed as I already knew it was true but I was scared of how you would react.. and I appologise for that cos you're doing everyone proud :D And you can quote me on that on your blog (if you can stomach my poor grammar and spelling dirtying it up lol) Love you Little 'Un xx"
And on that note, I'm having a night off from exercise and spending some extra time with the bf :o) x

Friday, 30 April 2010

Sugar & Time



Evening everyone :o) I hope you've all got mega bank holiday weekend plans - I know I have! So I've a few things to tell you about today and a little favour at the end too, but I'll leave that until the end.

The No Sugar Challenge - I am at the end of Day 3 of my 30 day no sugar challenge and to be honest, it's not too difficult just yet. My friend told me the first week will be the worst because of the withdrawl but I haven't had anything like that - although I never had sugar every day before this so perhaps the worst is still to come.

As you can see from the photo I took in the ladies toilets today, I have dyed my hair - which I have since dyed again because it was too unnatural looking. Now it's a very dark brown with red shine. Lucky for me, I only ever dye my hair with semi-permanent (no peroxide - much kinder on your hair!) so it will fade over the next month into a more natural colour then back to my natural brown :o) Isn't it annoying how your fringe always goes the darkest?

A guy at work today (I say guy, he's 18 so it's more accurate to call him a boy) confessed he doesn't eat breakfast or lunch because it's 'easier to count his abs that way' - I was horrified. I emailed him with tonnes of information about how his body will be suffering, eating his muscle and liver first, dehydrating, putting stress on his kidneys, finally eating fat stores and going into starvation mode (slowing metabolism and binge eating - which he already does, eating 2 12 inch pizzas last week on lunch) and he replied "but I still have my muscle! haaa" - there is no hope for the youth of today. at all.

Hopefully, if I'm not too exhausted tomorrow from emotions and excitement I will be able to write a short blog about my day (first day at Badminton Horse Trials for me! Dressage tomorrow!) but until then, I've a little 30 second favour to ask you...
My sister has EDS and when one of the two specialists for this rare condition retires this September they are going to close that department at the hospital she is treated at, meaning she'll be 400 miles from the nearest help. If you've a spare 30 seconds, could you sign the online petition to stop this closure? Remember to click the link they email you to verify your signature. It'd genuinely mean the absolute world to me if you could do it for my sister and everyone else who is treated by Prof. Bird. The link is:
http://www.hypermobility.org/capetition.php

...and keep an eye on my blog, because I am signing up for the Hull 10k in May to raise money for the EDS charity - my sponsorship forms are in the post so I'll be driving everyone I know mad hunting for sponsorship (not you guys though!)

Until tomorrow! x