Friday, 4 July 2014

The Roadtrip

So in my last post, I only mentioned about 36 hours of my roadtrip, and I didn't even share ANY of the pictures I took - how rude!

After the fun and games and beating of my body on the first 36 hours of holiday, I then set out to abuse my body in a new way - keeping it static for long periods of time. Now, anyone with Ehlers Danlos Syndrome will know how hard it can be to sit still for long periods, or to confine your body to small area. It's hard because joints get stiff, or start to ache, or need to be stretched. A big part of a road trip after all is to be in the car, a lot, for long periods at a time.

So, over the course of 6 days, we did 2300 miles in total. I thankfully didn't have to drive, my other half was keen to do that all himself, but none the less it was hard to sit and not be able to stretch the full extent that I normally can; not be able to contort myself to my normal comfortable positions.

The week of discomfort at times was worth it though, for the views, for the experience. I got to see some beautiful things. The Alps were wonderful; we visited the Shroud of Turin; we went to Monaco! It was fabulous.

Here are some of the pictures I got :)



This beauty was taken at the Notre Dame de la Garde in Marseille. It's beautiful there. I loved it, up the most massive hill ever!

A stunning view from Monaco, at the bottom of this picture. To the bottom right of picture is the famous corner in the Monaco F1 Grand Prix race circuit. We sat up on the edge of this road for about an hour for the other half to take pictures of "rude" cars going round this corner. I admired the view and worked on my tan!


This lovely shot was taken from the car as we were driving through the Alps. There were SO many stunning views like this along the way. I genuinely couldn't get over how beautiful some of the views were.














So yeah, that was some of my road trip :) Yes it was hard at times, and yes I pushed my body to the max at times, but it was worth it. And I'm learning to better understand my body, learning to hear the warning signs sooner. I'm getting better at having control on this.

Wednesday, 2 July 2014

Continue to Challenge

I am continually challenging my body to cope that little bit better with life. It's a constant battle, and probably leads to a lot of stupid choices on my part, but I persevere.

One of my recent decisions was to go test my body by going on a week long road trip. We planned to drive down to the South of France, then head over to the Alps, and drive up the East side of France. It sounded great. Then it was dropped on me that we were going to drive via Le Mans to stop in and watch some of the 24 hour race. Ok, not too bad. Seemed fine to me in fact. Then we go there.

After having to stop to watch the England world cup match (yawn!) we headed over to pick up our tickets, and then we drove the route we were going to have to walk to get to the "best section" of the track (this is according to the other half). Yeah... that was when it dawned on me what a challenge this was going to be. We had to walk for an hour. I got an hour's sleep that night. That hour walk there was fine. Not a problem in fact; hell I'd even say almost pleasurable. We laughed and talked and it was lovely.

Then, after watching for a few hours, and the other half getting excitable and taking lots of pictures and videos; then we had to head back. Yeah, that hour walk back wasn't fun. My "good" hip locked up and made the last 15 minutes of the walk back bloody hard work. Then we did lots more walking around another section of the track and got some pictures and videos, and He got LOTS of pictures and videos. But I pushed far too hard. And I kept pushing for the entire day.

By some freak of nature though, after a long, good night's sleep, I was like a new person. Never before have I got away with beating my body up like that, and I doubt it'll ever happen again, but I think the fact I was on holiday just meant my body played nicely for once....

Monday, 26 May 2014

Habit Forming

I read somewhere once that it takes 21 days to form new habits.  If you do the same thing at the same time every day for 21 days, then it naturally becomes part of your routine.

I tried this with my pilates/crunches/physio exercises that I was trying to do in a 20 minute routine. I had it pretty good. I managed 5 days. Then I missed one because I was feeling a bit rough. And rhen I drank too much to be bothered the next evening. So I promised I'd only do it 5 nights a week, and have Friday and Saturday nights as rest nights. I've not done it since.

So now I'm trying to do it with smoothies. I bought myself a blitzer about a week ago and I made my first smoothie yesterday.  Now I'm planning to try and have one a day - preferably for breakfast. I plan to use them for meal replacement for a while if my weight doesn't figure itself out soon as well. I'm really hoping I manage to commit to this one this time. I've done 2 days. Tomorrow will be the first real test as I need to make it, drink it and clean up after it all before I go to work....hmm we'll see. I've prepped all the ingredients and put the blitzer on the side so hopefully that'll help.

I really want to see if the 21 days theory is true.

All I know is that I need to improve my self care again. I popped a rib yesterday and it hurt so bad all day. I got to the point that I had to take one of my "magic blue pills" - a pretty potent muscle relaxant that sends me to sleep within 45 minutes of taking it. It wasn't cool and I never feel quite right the morning after if I don't sleep straight through - which I didn't.

My hips have been hassling me more and more of late as well so I really do need to get my weight and exercise and eating routines all back under control.

Also I found a picture of the full scale for confirming the diagnosis of Ehlers Danlos Syndrome online earlier. I'll post it at some point soon hopefully. It was a bit scary to see the full extent of how many boxes I tick though.

Right now I think I have to say this is one big ol' "watch this space".

Tuesday, 29 April 2014

Watch, Weight and See.

For the last few weeks I have noticed my joint pain increasing considerably considering the lack of stress on my body. I couldn't figure out whether there was a specific cause, or whether it was a bad spell, or what it was. After all, I was sitting down more, putting less pressure on my joints, and very rarely stressed (except for this week and a few weeks ago, but we'll ignore that!). What was causing it?!

Then I stepped on the scales... And then I realised what was causing it. Since I've left my retail job, and taken on an office job I have gained one and half stone. Quite a bit of weight that is. Quite a bit to have gained in only 11 weeks. Oops. Maybe sitting in an office where there is frequently free chocolate, crisps and cakes isn't such a good thing...

So, I came to a decision. I've got to do something about it, and I've got to do something that is realistic long term and achievable, and will mean the weight will slip off quietly (hopefully with the extra half stone I've been trying to shift for a good year or so now) and will stay off. I need to make a lifestyle change, not a drastic one, but something reasonable.

The first thing to go; snacks unless they are fruit or vegetables. My partner can eat for England and not gain any weight, and one of the difficulties with this is that everytime he goes for a biscuit (or 10), I get tempted to go for a biscuit or two. Never seems like much at the time, but it soon adds up. Add to that bowls of Frosties when I get sugar cravings, numerous alcoholic beverages of an evening, blah blah blah. It all adds up. So, yeah, I now keep a constant supply of apples and carrots and such like around me.

The next thing I realised is my drinking. Not just my alcoholic intake (and lets be honest, I'm never going to lower that drastically, I enjoy it too much), but my general liquid intake. I'm terrible for not drinking enough, and when I do drink it's usually fizzy drinks or coffee and occasionally fruit juice. Definitely not enough water. So now I have a 750ml bottle at work that I keep filled; I aim to drink one before lunch and one through the afternoon. I also have taken a leaf out of the fitness freaks books and made this water:

It's cucumber, lemon and mint. There's supposed to be ginger in it too (to aid digestion), but I haven't braved that yet, and I couldn't find any at Sainsburys. I'm only making up a litre of it, and drinking it in the evening. It's not the worst thing I've ever tasted so that's good. And by keeping it refrigerated it also apparently helps to burn more calories as your body has to work harder to warm it up as you drink it. That's what the internet says anyway, and we all know we can't trust that always!

Anyway, now I just need to get an exercise routine sorted that is achievable, and then hopefully, just maybe, I'll get back to a comfortable size and my joints will go back to aching less.

Thursday, 10 April 2014

I'm Rubbish, I Know

Life has felt truly hectic of late, it has to be said; what with the holiday to New York, dramas at home and trying to get to grip with a new job that I don't really like. Fun times.

So, as promised a long long long time ago, I thought I'd pop a couple of my New York pictures up. And when I say a couple, I hereby give you a warning that this is an incredibly picture heavy post!

Right, so here we go. The first thing we did when we got there was dump our stuff and go straight out to try and minimise the risk of jetlag.

We were so close to time's square it was unbelievable, and it looked pretty awesome even in daylight, I did take lots of photos of it, but once you've seen one lit billboard, you've kinda seen them all.
I love the fact that even on the first day we saw a policeman on a horse. I guess this is such a novelty because in the UK the horses only tend to come out for big events and when shit is going down....
Gotta have a good old cheesy grin. I'm stood up the Rockafeller Tower looking across at the Empire State building. I made the effort to centre in the picture I took of my brother, but he wasn't so thoughtful. Bless.

I don't have a huge number of pictures from our first full day it seems, but we did go to Central Park. It wasn't quite what I expected but maybe that was just because we were there quite early in the day, and it was still a bit chilly. This is a place called "The Castle", and the lake between me and it was frozen, making for a very Disney-esque seen.
Whilst we were walking round the shops I saw this beautiful sight below, so of course, I had to take a picture. Zebras for the win.
And I had the obligatory cocktail, that was, quite frankly, to die for. UK appletinis just are not up to this standard.

On the next day we went down to the bottom of New York, and saw the Statue of Liberty, went to Statton Island, and did a massive walking tour. The picture below Lady Liberty is from Statton Island, where they have a memorial to all those who lost their lives in 9/11, as hundreds of people did from the island. If you look closesly, you'll notice each face carving is slightly different. The walking tour was one of the biggest challenges I took on as a zebra, but I made sure I took my medication properly, and was careful not to rush off, an it actually went surprisingly well. We walked about a mile and half over the course of 2 hours, with lots of breaks to get told about different sites. If there was the opportunity to perch some where I took it, and I think this really aided me in being able to do it.

This picture below is one of the sights from the walking tour, That globe in the background was between the twin towers when they came down. They managed to salvage it and have done little repair to it. It's amazing how well it survived considering the hideous events that day. The holes etc are all where falling debris has melted and smashed through. It's certainly enough to make you think.
This was another sight on the walking tour, I was just astounded that amongst the skyscrapers, you can have a beautiful, old, classic building, just nestled quietly in there.
Another obligatory picture of Times Square, this time at night:
We went to catch a show on Broadway, we saw Matilda, and by god, if you ever get the opportunity to see it, do go! It was amazing in every single way.
On the last full day we went to Grand Central Station. I got a few pictures, but none were oh-em-gee amazing like I hoped, so I thought I'd just sling this picture of a clock from there in here...


And that was it, my trip to New York. I did a lot of walking but I survived with minimal issues. I made sure to wear reasonably sensible shoes that I knew beforehand were comfortable for walking in. I made sure I religiously took my medication at the times I was supposed to take it. And my family, considerately, booked in breaks every hour to two hours to make sure I could sit down and have a rest somewhere. Turns out I wasn't the only one who needed the rests, which made me feel much better.

I think what I learnt from this as a zebra, was that it is still possible to do holidays like "normal" people do. You just have to plan a bit more. One thing I found with New York was there seemed to be a lot more stairs, and a lot less disabled access. This was one thing that we did have to account for a bit more, and meant planning in where I would do stairs, and making sure that if ramps/escalators were available, that I used them to ensure that if there was a time later on when the same option wasn't available, I would still have a bit of energy to cope.

Thursday, 20 March 2014

New Job

Jeez, you can tell I got a new job, I've not blogged for over a month! Oops.

So what has happened over the last month?

Well, I got a job to begin with (no shit, Sherlock, I know!). It's Monday to Friday, 9-5.30. So all in all, pretty darn good. It's an office job as well, which means no long periods of being stood up, and minimal risk of heavy lifting. The only downside is that I am instead sat on my butt for the better part of the day, which is a high risk for weight gain.

BUT, the positives are that I actually have some energy when I get home now! It's a little closer to home, only 20-25 minute drive compared to a 35-45 minute drive. It's only 2/3 of the drive was doing as well, and I'm home by 6pm most days; I wasn't even finished at 6 in the old job! All of this results in me actually more energy when I get home, which means I have the energy to cook healthier meals and make lunch for the next day (most of the time anyway!).

I also haven't had an epically bad flare for a while as well. I've had a few flares, but they have been on the bearable side of a flare rather than "just leave me here to die" side. Bonus.

What else has happened in the last month? Well, other than discovering this extra energy, I also went on a trip to New York with my parents and brother. BUT, there's so much to talk about from that, I'm going to save it for another blog post; hopefully this weekend, but I make no promises as I fail at keeping them.

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.

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.