Good & bad.

So, yesterday was a great day! After waiting to be one of the last people in my creative writing class to have to read some their work out, it was my turn. I was literally terrified. Like, sweating, tensed up, super nervous terrified. Also, as I forgotten to find a printer to make copies of my work, me and Tom had to sit at the kitchen table (we finally bought a table after six months, wooooo!) and make hand written copies for my whole class. So that was interesting.

Anyway, after I read, my tutor explained that the type of poem id written is something that's usually taught towards the end of the next level up course because it's meant to be super tricky to write. AND he liked my poem so much he asked to keep a copy of it. I AM SO HAPPY. I've struggled so much in the last few years with feeling like I'm not putting my brain to use and that there's not much I can do and be good at anymore and it feels SO good to be told by someone who is experienced at writing that I actually am good at it! Yay me!

However, the bad side of things is that being super tense because of nerves and spending an hour hunched over writing out copies of work is definitely not good for my neck. So now I'm off work, in pain, telling myself off every time I forget to keep my neck straight. But, at least I now have proof my brain still works, even if my body doesn't! Swings and roundabouts I guess!

Be happy!

I havent posted in a while, mostly because ive been feeling sorry for myself. Ive been feeling like im not achieving much or doing anything exciting anymore because I spend most of my time at work and the rest of my time recovering from being at work (I sleep on average 14 hours on a friday night and again on saturday. impressive, I know). But I realized, most of the reason I feel crappy emotionally, im making myself feel that way. I wanted to list some things ive realized in the last week or so that made me feel better in hope that they might help someone else!

1) its okay to look like a potato sometimes if you need an extra hour in bed instead of an hour doing make up. Its not okay to look like a potato all the time because if you look like a potato, you feel like a potato. Also if your body isnt working properly and you dont feel good about its appearence either, its pretty easy to fall out with yourself.

2) there are ways to do the things you want even if its not in the way you imagined. I always assumed id have some big creative job taking me all over the place with an erratic schedual when in reality, I need a stable job with low stress and a lot of leniency for my constant "I need to go to the doctor agaiiiin....". This doesnt make me a failure or mean I should give up. I cant be a famous journalist? I have a blog. I also just learned i can write for independant websites for no money but still, i can do what I like. My dreams dont have to be the way I make money.

3) a little stubbornness is good. I wanted to go for a walk this weekend. My hip gave up in the car park before we even set off (damn comfey walking boots making me take massive strides cos it feels like I'm walking on the moon!). I didnt tell Tom my hip gave up until we were pretty much at the furthest point of the walk because I wanted to prove to myself that I could still do it. I also decided that if a girl at work can do the three peaks with no training, I can sure as hell push myself to walk 3 miles. I was on crutches the next day but you know what? I bought badass crutches for a reason....so I could still enjoy myself! And I did enjoy myself. We saw pretty scenery and had ice lollies and looked like weirdos trying to catch water droplets comin off the top of the cliff.

4) House M.D is an awesome tv show but I imagine pains in my legs when I watch it. This doesnt really have anything to do with anything, I just wanted to tell you all.

5) when youre having what feels like the worst day in the world, it probably isnt the worst day in the world. If you need to rant, rant. After you rant, get over it and carry on as if its a new day. On monday morning, everything that could go wrong, did go wrong. But a friend helped me and another friend showed me an awesome cake she made and then i was happy again. You cant choose everything that happens in life, but you can choose how you react to things. A hippy guy I used to work with taught me that and its so true.

6) having a bottle of Mojito in the fridge is a good back up for when none of the above work. So is having a Tom to listen to you rant and laugh at your potato head, but I cant share him, he's mine.

Arthritis and bright pink crutches!

Hi again!

Today I got good news and bad news. I'll start with the bad news...

I had an x-ray on my neck last week and today I got the results. To be honest, I was half expecting nothing to show up and that id have to fight them to believe I was in pain, which is what normally happens. I was also half expecting to be told my neck looks like an almost-over game of jenga with bits all out of place. I wasnt at all expecting to be told I have osteo-arthritis in my neck. But, apparently I do.

Arthritis, two weeks before I turn 23 is kind of brain boggling to think about. I dont think the doctor expected me to laugh when she told me, oops. Apparently I dont have a curve in my neck either which is also bad. I think, from what the doctor briefly explained, my ehlers-danlos meant the ligaments got too stretchy which meant my muscles over worked and caused the weird straight neck thing and then the extra impact from that caused the osteo-arthritis...or something like that. So I have to have physio. And my main dissapointment is that this definitely means no more headbanging, which sucks, because im not really sure how to dance any way other than jumping around and flailing my hair all over.

But, I promised good news......drum roll.....I got bright pink crutches!!!!! I saw these on another girls blog (google 'eds lottie', her blog is really good) a while back and thought they looked awesome. After my quasimodo week from my last post I decided it was time to get them! They are so cool. They're called Smart Crutches, if anyone is interested and you can get them in pretty much any colour.

They've got this whole bit to lean your forearms on so theres less pressure on your shoulders and the feet bend around so you can lean on them pretty much anyway you like! Fingers crossed, this means I no longer have to sit on the floor in public because I hurt too much from standing up!

So, my neck looks like "what we expect in someone at least over 45" (doctors words) but I got awesome pink crutches! Ive posted a picture of them and im hoping it works but this is my first post using the app so im not sure what im doing and this camera is potato quality.

Anyway, this was rambly but if you read right through, thank you!!

I broke my laptop :/

so..being the genius I am, I started a blog and then broke my laptop the next day.

I stood up to check whether the potato's were boiling yet, but tripped up and kicked the screen of my laptop which was sat on the floor. Although, Tom asked me to check on the potato's, so I guess I can blame him! Maybe not....

I would love to use this as a time to blame EDS and tell you all about how we have a lack of spacial awareness because our joints don't move how we expect them to, but if I'm honest it was a lack of brain awareness and I didn't realize there was a blanket wrapped around my foot. I still can't believe my laptop broke though. I broke the connection between wire and computer, yet with a unique way of turning it on, it continued to work. I accidentally poured a pint of water over it, yet after letting it relax in front of the fire for an hour, it continued to work. Finally, a little kick in the face was what broke it. Gutted.

Anyway, hopefully I'll make a post soon which isn't about my destruction of technology.

Thanks for reading!

An introduction to the world of Ehlers-Danlos....

This post is really long. They won't all be long, I just wanted to explain EDS well and I kind of rambled. Now, I could tell you all about intricate medical stuff that adds up to this condition, but the chances are if you don't have EDS, you've probably never had reason to look into the role collogen plays in your body so if I explain it, it wont mean anything to you. If you do have EDS, you already know it all anyway and probably just want something to relate to. So I'll give you a brief overview of my symptoms, and then I'll explain it in "normal person situations", as I'm going to call them.

• I get subluxations (partial dislocations - the joint comes out of the socket, but not the whole way) in every joint, multiple times per day.
•  I wear orthopedic insoles because otherwise the arches in my feet collapse.
• I have some mild prolapses. One of them being my bladder which means about 3947247 trips to the bathroom per day. 
• I'm gluten intolerant. 
• My skin is weirdly stretchy in places. It's pale to the point of translucent and bruises like a peach.
• I take tablets to regulate my adrenaline otherwise I get super hyperactive or anxious.
• I have permanent dry mouth so I drink a LOT of water. 
• I could use something every day for years and then one day I'll wake up and be allergic to it. I don't know why this happens.
• I run on very limited energy and if I run out of energy I get dizzy, frustrated, I can't string a sentence together and I have to eat food. 
• I think there's more, but that's all I can think of for now. 

So, how can you imagine this?

Imagine you're carrying a child on your shoulders. Now imagine an hour later, you're still carrying the child. Imagine the aches and the tiredness. But for some reason you can't remove the child, so you continue about your day with this feeling getting worse.

Then someone makes you join a three legged race. Before you know it your leg is twisting out at a weird angle and you can't make it stop. Now you have to also continue the rest of the day with your leg attached to this other person, twisting all over the place.

You have to reach to get something off a shelf and as you do your shoulder makes a "clunk" noise like....a clunking thing. It feels like when you stub your toe. Except it's in your shoulder and it doesn't fade..

You're in a meeting at work and still carrying a child, have a leg attatched to someone and a stubbed-toe-feeling shoulder and out of nowhere you realize you suddenly have that painful bladder feeling like when you've held a wee for a really long car journey and can't find a service station.

You excuse yourself from the meeting, but this is embarrassing and your strapped-to-another-person leg bashes into a table. You get heart palpitations, because the embarrassment spikes your adrenaline. I guess this can be compared to antelopes galloping on your chest.

Because of the stampeding antelopes, you can't concentrate on your work and you make a couple of mistakes. No one can see the child on your shoulders, the man strapped to your leg, the antelopes or the stubbed toe shoulder. They just see the mistake. So they come over and tell you to please concentrate more because silly mistakes just aren't acceptable.

By the time you get home, this is still all happening but your friends want you to meet for a drink.....do you think you'd feel up to it? How about knowing you were going to relive it every day for the rest of your life, but with various other odd things happening at any given time?

This is the best way I can explain EDS. We look normal, we act normal and underneath, this is going on. The reason I've made this blog is to try and give people an insight into an illness they've never heard of and also to help people who do have EDS to realize that they're not alone. And that sometimes, even though it hurts, it can be pretty funny. And finally, that we can still be happy and find weird ways to cope with it (ever driven home with a jar of coffee stuck between your shoulder blades to keep your ribs in place? That's quite amusing.). 

I promise not every entry will be this long. Thank you, if you actually read this far!