Monday, 17 February 2014

Support Networks

One of the biggest things for me, when I first got diagnosed with this condition, was figuring out where the heck to find support. I looked online and hunted all over the place, but there didn't seem to be any support groups in my town, and to be honest I wasn't sure how much I actually wanted to go and sit in a room with strangers once every set period of time and talk about it.

I thought about it long and hard; looked at specific sites for Ehlers Danlos, etc etc. And then I remembered that I have a tumblr account. I use my tumblr account as a generic "reblog everything pretty" type account, rather than one with a specific focus. So I searched the tags for ehlers danlos, and I came across this whole other world. I found lots of people like me; a lot worse than me, better than me, the same as me. People from the UK, people from America, people from all over the place. I had opened up this whole other world.

It was there I found this magical post as well:
"Reblog if you suffer with Ehlers Danlos syndrome, I want to follow you."
So I reblogged, and it opened up a whole new world. Now that I follow back a few other sufferers as well, I get to see how other people cope with it. I get to see updates about new medicines, new theories, new self-help stuff. It's fascinating. And it has helped me hugely to get a better understanding of this thing. There's jokes, there's memes, there's all sorts. And every so often, there's a reminder on there that I've not got it so bad.

The thing is, this has made me think; social network sites are a fantastic aid. On Facebook I found a couple of EDS groups, and have joined them; again for the same reason of getting updates on information. Sometimes there are requests from people through the Facebook group for sufferers to complete surveys and questionnaires because somebody is doing a study on it for something. I always do my best to fill out those types of things, because you never know if they're studying for a medical degree, maybe, just maybe, one day they'll find a way to mutate our collagen back to the way it should be.

It is something I really recommend though. If you have this, get on your social media sites and find the groups. There are ways on Facebook to make it private that you've followed certain things if you don't want to shout about your condition to your friends (I keep all my Hypermobility stuff private from my Facebook friends because it's nothing to do with them. The ones who need to know, know, and anyone else doesn't matter).

Technology definitely does have its uses, it has to be said.

Thursday, 13 February 2014

Dinner Time!

One of the biggest things I tend to struggle with is finding tasty meals to cook that don't require too much effort, so when I do find one of those meals that is straight forward and allows recovery time during the cooking process, needless to say I get a bit excited!

And I have finally found a new dinner recipe that is so easy and straightforward that I can do it, and not fear complete exhaustion after making it.

For Christmas, the partner's Nana gave us a cookbook. I seemed to get given a lot of cookbooks this Christmas, not sure if people are trying to tell me something? Anyway, we were given this book:

And I have to be honest, I was intrigued and hopeful. See the problem with my partner is that he has very boring taste. If he could live on just meat and bread, then he would. And the plainer the better as far as he's concerned. It is definitely a case of quantity of quality with him, and he's still slim! So not fair! Anyway, I digress. So upon receiving this book, I was intrigued to see if there was anything I could actually cook for the pair of us that I could trust that he would eat. And there is! Only like 4 recipes in the whole book, but that's 4 more than we had before!

So on Tuesday night, I decided to try one of these recipes for the first, as it seemed quite straightforward, and if all else failed then it was Two for Tuesday from Dominos (good old take away being the back up plan!).

The picture was bordering on food porn, and the directions seemed incredibly straightforward. I stupidly said "what can go wrong?!" in my head, and immediately cursed myself for saying it. However this time I got lucky, it is a pretty much foolproof recipe!
Here's the food porn:

I'm afraid I have covered the recipe itself as I'm probably infringing all sorts of copyright laws already by even posting this picture, I didn't want to make it worse by showing the recipe too!

Anyway, I'm digressing. With this meal, you need potatoes peeled and sliced. I know for me that peeling potatoes is a difficult task and one that I cannot rush, so I prepared these in advance, so that I wouldn't get too tired when cooking later. To prepare potatoes in advance, just ensure that once they're peeled (and chopped if you're chopping in advance) that they are kept in a pan of water. The water needs to completely cover the tatties, and then they'll be fine for a couple of days in the fridge. Then when you come to cook them, just change the water if you're boiling, or put them in whatever you're adding them too. Simple.

The rest of the recipe was very straightforward, and after the tiniest bit of effort, you just leave it to simmer for 20 minutes. The only real difficulty I came into what at the end when you grill the pan with cheese on top of it. By this point the pan was on the heavier side, and I was hungry and a bit tired, so the other half had to give me a hand to get it out and serve up. Other than that though, it was so simple. And it's just a case of slinging it in a bowl and eating with a fork. Minimal effort!

The best bit of it all? It was a great success, no need to ring Dominos, and it got the seal of approval from Mr. Fussy. Win all round.

Maintain Motivation

The biggest, hardest thing I find about going a period of time without working is to maintain a routine. Alongside this, it's also hard to maintain motivation to be good.

Sure, I could treat this as a holiday from work, and just laze around and not really do an awful lot, maybe throw in the odd nap here and there. The problem is, before I know it, I'll be needing that nap at 3pm every afternoon. I'll be struggling to get out of bed before 9am. I won't want to go to bed at 10.30pm to try and get a good night's sleep. So for me it is important that I do my utmost to keep myself busy and in routine.

Needless to say this doesn't always go to plan. This week for example, I have had my alarm set for 8am everyday, with the intention of being showered and dressed by 9.30am. Yes, a bit later than your average working day, but close enough that it won't be a complete shock to the system to have to get up at 7am. That was the theory anyway. The reality was I managed it on Monday. Tuesday I slept until 8.50 and showered about 11 (though I did some jobs before I showered); Wednesday I woke up at 9.45 and didn't get showered and dressed until gone 12; and today... Well today I managed to wake at 8, it just took me a little longer to get out of bed, and I did some jobs before I showered and dressed again.

So the plan for routine, yeah it's not working. None the less I'm going to persevere, and hopefully get myself into a routine with a bit of time. And hopefully this routine will involve more exercise, more pictures and more blogging. And hopefully I'll be able to carry that bit of the routine forward into my work routine when I get one again.

Tuesday, 11 February 2014

Take the Plunge

I am free. I took the plunge and quit my job, and now I am free.

I've always been a strong believer in the saying "life's too short to be unhappy", but over the past few year, I've gotten much better at kiving bu this rule. Kt may not always be the most financially sensible option to choose,  but mental health wise it is always the right decision.

I hated my job,  it had reached a point where I dreaded going to work, and I was neglecting myself. My health was suffering majorly,  I was repeatedly coming down with colds and bugs, and these illnesses were making it harder and harder to cope with this condition.  So I took the plunge, and I quit.

Now I have to work hard to find another job. I don't want a work break like I took when I was first diagnosed with this condition.  I needed that break then to get my head around what this meant for me. Now I know what I need from life, most of the time anyway, and it's just a case of getting it.  I'm determined to maintain my routine which means getting up at 8am everyday and trying to get to the gym on my usual days, at my usual times.

So, watch this space as I hopefully get to undertake a new career and improve my health even further.