Wednesday, 29 January 2014

2014 Could Be The Year

I know it's cheesy and cliche to be like "This year is my year" and so on, and so forth. However, let's toss that to the side for now as I have a good feeling about this year. Now that I'm not dying of laryngitis anymore that is!

Why do I have such a good feeling about this year? Well, today I went to the gym, after about 10 days away from it; and I've somehow managed to increase my fitness level. I lasted longer, and on harder levels than I've managed before, and I don't feel bad for it (though whether it's a different story tomorrow we've yet to see).

In terms of fitness/ability I have also finally been able to do a series of squats. This statement especially is a big deal for me as for the last 5+ years, I've never been able to squat down to do anything without excruciating pain, or just falling over all together. Never fun when some one wants you to crouch down to look at something with them; or worse yet - and ladies I'm sure you'll know exactly what I mean here - when in a not-so-pleasant public convenience facility, because let's be honest, nobody wants to sit down in that sorta mess, but if you gotta go...

In terms of things away from exercising, I have also now quit my job. I have 7 shifts to go before I'm done, but that's bearable. I am so happy to be done with that place, and I think my health will improve a lot further from not having to commute, not having the financial strain, and from not being stressed out constantly.

Okay, so I've not been responsible enough to sort another job before I do this, but I am confident I will be able to sort something else quickly. And I'm quite happy, in fact almost keen, to temp whilst I find the right role for me.

Anyway, as I'm on such a fitness kick, I figured it was about time I did the sensible thing and invested in a proper sports bra. I've just ordered this:
Buy Shock Absorber Zip Sports Bra Online at johnlewis.com
This bra is from John Lewis and is on deal at the moment, so it seemed rude not to really! Here's the irect link.

Anyway, this is definitely a year for onwards and upwards I have decided. I'm going to make 2014 a year about making me happy. Nobody else but me. Just because, every once in a while, it's important to be selfish.

Wednesday, 22 January 2014

Today's the Day

Or rather,  tomorrow is the day. My first day back at work in two weeks because of this stupid laryngitis virus thing I've had that's made me so ill.

I can't say I'm looking forward to it, and just to make matters worse, I'm going back on the 10 hour day rather than the standard 9. Hopefully I'll be able to ease back in it so that I don't overdo it and make myself sick again.

So, here's to tomorrow. I best get some sleep to give myself a fighting chance of having enough spoons to get me beyond getting ready for work.

Saturday, 18 January 2014

The Angel and The Devil

The Angel and the Devil is a common analogy used in many scenarios. I had never thought of it being applicable to EDS, but when I had my friend over the other day for coffee, biscuits and movies, we got into quite a deep conversation about it.

There's another "Big Night Out" like the one we dressed up as Skeletons for back at the beginning of November (mentioned here). This friend, K, and I often go out in town together as we have quite a good thing going on. We head out about 10pm; have a few drinks and a bit of dance; catch up with some of her other friends; and then about 1am I start to get tired and I go home, leaving K in town with the rest of the group. It works well for us as we both have fun, she gets to stay out to 3/4/5 in the morning, and I'm not feeling guilty for going home and leaving her with strangers because I know she's in safe hands. None the less, despite this perfect set up, I always feel guilty for leaving her, and we were discussing this the other night when we were looking at this next "Big Night Out".

K's a good friend and very understanding, I only had to explain to her once about how it felt, and ever since then she doesn't hassle me about "am I feeling ok?" etc,etc, but if I tell her I gotta go and that I'm tired, she gets it and lets me go; none of this "aww you loser" or "just 1 more hour". She's just cool with it.

Anyway, a mild digression there. We were sat talking about this big night out, and I was apologising that I always go home early, and we had a laugh that I'm always consistent (1am without fail every time). And then I said to her that I was sorry, but it reaches that point where I get tired and although I desperately want to stay out my brain just starts going "just think how much you're going to ache tomorrow as it is; just think how much MORE you're going to hurt if you stay out." And all too often that little voice overalls any other voice.

And that's when she said it; she pointed out that that little voice is my little angel. I laughed and said it was annoying; but she pointed out how true it was; that little angel reminds me of my limits. Yes the little devil is going "you're 22; shots! shots! shots!", but that little angel is getting stronger and stronger, and better and better at reminding me I can have fun, but I need to remember my limits.

So yes, the moral of this long-winded, poorly written story is let your little angel grow stronger; listen to it. Sometimes it is fun to listen to the devil; hell I even encourage listening to it occasionally; as that will help you remember why the angel is better. And it helps to let you have a better handle on the Ehlers Danlos.

Thursday, 16 January 2014

Past Time and Hobbies

As a follow on to my last past, where I generally whinged about being sick, I must admit, it has given me the opportunity to learn a skill I have wanted to learn for sometime; knitting.

So you might wonder why I am writing about this here, but I felt it was important. Something I hadn't considered when I started my plan of learning to knit, was how it might affect me. I hadn't thought about how much pressure it might put on my fingers and my wrists.

Thankfully, I haven't struggled too much as yet, but I have been dealt a reminder that even apparently simple tasks will sometimes be difficult for an Ehlers-Danlos syndrome sufferer. The aches I've had through my fingers, thumbs, hands and wrists have been bearable so far, but I fear on a bad day it may not be possible for me to do something I have begun to really enjoy.

None the less, I take pleasure in this activity, so I'm not going to give it up entirely, it's just a case of remembering my limits. Remembering that if it hurts, then I should stop, and take a rest. A lesson that I really should know to apply to all my life.

And maybe, when I get done, I'll put up a couple of pictures of what I've made.

Wednesday, 15 January 2014

Over and Over Again

Once again, I am sick. This is the second time in a month that I've been struck down by laryngitis, and I'm truly fed up with it.

The downside of being sick as an EDS sufferer means that where my body is so busy fighting this virus, it's forgotten how to deal with the joint pain. So it means up-ing the medication just to be able to function, something which I never like doing - I prefer to stay on minimum medication where possible.

The other issue of being sick means that I'm not able to maintain my gym time, as every time I try to do anything that even slightly elevates my heart rate, I'm getting a ridiculous amount of dizziness. This lapse in exercise means inevitably my body will hurt more when I do return to exercising, as it'll be out of practice.

Alas, I don't want to moan. I know that's what I seem to do a lot on this blog, but I really just want to document my thoughts and feelings about having this condition.

In an ideal world, I'd figure out a way to lend my body to people for a day, just so they can see what it's like, so that those who don't understand can learn to understand. And then when they were done with their 24 hours; worn out, fed up of the aching, and relieved to be going back to their own healthy body, I'd remind them that I'm a mild case of this condition, there are people who are suffering a hundred times more than I am.

And that is something I need to remember anyway; I am only a mild case of this problem. Yes, it is painful and frustrating, but I could have it so much worse, and I do need to remind myself of that sometimes.

Friday, 3 January 2014

2 Years

This month marks the 2 year anniversary of my diagnoses, so the question arises, what have I learnt in the last 2 years?


  1. Don't be afraid to admit you're in pain. Yes, some people will saying you're making a fuss over nothing; some will say you're just making excuses; some will say you're being over-dramatic. But if you say it hurts, then it hurts. End of story, no one else has your nerves in their body, so no one else can be sure.
  2. Don't be afraid to ask for help. You are not invincible. You have to take care of your body. If you can't do it alone, ask for some one to help. If they won't, well screw them and find some one who will.
  3. It is your own responsibility to take care of yourself. As stated in point 1, no one else can feel your pain, so no one else can tell you when you are doing too much. You have to learn to listen to your body and respond appropriately.
  4. Exercise is a necessity. If you are in a vaguely able to state to do some form of exercise, then do. It is important to not let your muscles deteriorate further than necessary. Keeping them strong will keep you more able to function, and slightly (only slightly) reduce your risk of injury; but for pete's sake, do not forget point 3.
These points are more directed at myself than other people as every hypermobility case is different. What is possible for me, may not be possible for some one else. What is impossible for me, is feasible for another sufferer. There is no set limits within Ehlers Danlos Syndrome; that is why it is so hard to diagnose; so difficult to treat and so frustrating to get acknowledged.

For me, the year holds finding my own happiness; further understanding my limits; hopefully a fair bit of travelling and definitely lots more gym time. Having this condition has been a learning curve, and I have to say, I almost enjoy learning about it now. Sometimes it is hard, and sometimes it gets me down. But I am getting there, I am learning. I am still living.