September 13

I’m going to do something different for this post. Something I have never done before……. I’m going to talk about me! Not my interests or dislikes like usual but a health issue I have that not a lot of people know about. But before I start I want to apologise to any of my readers who enjoy my blog for the moaning, swearing and general bitching! I ASSURE you I will go back to writing what you’re used to for my next article :)

But for this one I just figured that I’ve written enough posts now to warrant sharing a little about me and give my readers a chance to get to know me better……… and also I want to have a fucking rant about this stupid health problem that keeps causing me to injure myself and tear my knee ligament AGAIN!! Yeah guys, in case you haven’t noticed I’m a bit bitter about it…… grrrrrrr…….

Soooooooo, let’s go back to the very start of all this! Since I’ve been young I have always had a penchant for falling over. So much so in fact that I have mastered the art of it beautifully. No one else could fall with such grace like me. Especially down stairs…… or even up stairs for that matter! Still to this day I have to be incredibly careful to watch where I’m going to avoid social embarrassment and bruises. Social embarrassment being the worst, obviously.

Aside from my incredible face-planting, I have also throughout the years and to this day had bruises that seemed to come from absolutely nowhere appear on me! I would have a few days where I didn’t fall over (those times were rare) or do anything that could cause a bruise and I would suddenly see a massive black thing on my arm and think “where the fuck did that come from?!” Even now when getting changed I can sometimes see a fucking cracker of a bruise on my leg and have no idea where it came from!

Then, when I was 15 I started to get terrible pains in both my hips. It was a stabbing and burning pain and my hip joints used to grind and crack something dreadful! I was then diagnosed with trochanteric bursitis, was put on Diclofenac sodium, the pain went away, came off them, the pain came back, went back on them again and the pain went away and guess what! I came off them and it came back. I received a polite “fuck you and fuck off” from the doctor (that is basically what he said without the polite, bullshit approach) so I went to a physiotherapist when I was 20 after 5 years of all that bollocks to have her get rid of the pain and help me keep it away. It was then that she diagnosed me with “Hypermobility Syndrome”. My initial thought was “What the fuck is that!” All I could understand from what she said was that I am overly-flexible and that a lot of the best athletes and dancers have it. That sounded great! Until she said that I could end up in a wheelchair. Then I changed into “WHAT THE FUCKING FUCK!!!” Of course it doesn’t mean I WILL end up in a wheelchair. It’s just a possibility. That didn’t make me feel any better though, surprisingly!

Adding to that, ever since I’ve been around 13 I’ve had pains in my knees that would come and go but it all got worse when I was around 17. They would ache so badly all day long, get stiff and sore if they were bent too long and then get stiff and sore when straight for too long! Not to forget that moving between the two positions was also painful! It was so bad some days that when I used to drive my ex boyfriend to college he used to have to massage my knees whilst I drove or it was too painful! I was told this was down to “growing pains” by one doctor and then told that “growing pains” are a myth by another! You can imagine how nice it was for me not to know what was going on with my own body!

Oh, and I musn’t forget the bad back I’ve had for the last 2-3 years. My thoracic spine is stiff and sore and I have to crack it every 10 minutes to get temporary relief. The pain has also spread into my ribs and made the muscles around it stiff and knotty. Because of this I have problems typing on a computer for long periods of time because it makes the pain worse. That is why there are sometimes a few weeks between my blog posts in case any of you were wondering why it was taking me so long to knock an article out!

What is important to consider also here is the fact that I have sprained my ankle more than once, broken 1 finger, 4 toes each more than once, have had frozen shoulder twice and have torn a ligament in my knee 3 times. It has always seemed so easy for me to injure myself! (I’m not sure whether you’re picking up on the idea that maybe all these things are linked? If you are then you are a lot smarter than a lot of doctors out there!)

In the last 2 years I have had numerous blood tests which make me faint because yes, I am a big baby. I have also had an x-ray which showed that my spine is normal which it would be (I will explain why later), all of this for my doctor to tell me 2 years later that all of this shit is because of my Hypermobility Syndrome, or HMS for short. So that was an amazing waste of time! But, I must admit, I did feel relieved that something might actually be done to help treat me. However, I have always been unlucky so all he told me to do was eat well and exercise. Thanks a fucking bunch!

Before I continue I should probably explain what HMS is. Unfortunately my knowledge on it is not that extensive as it is not a well-known condition and most doctors only know as much as you can find on the internet! But I’ll do my best to explain. HMS, or Ehlers-Danlos Syndrome Type III as it can also be known by is basically a connective tissue disorder. The joints, muscles, tendons and ligaments are laxer and more fragile which leaves all these things vulnerable to injury. It does not affect vital organs so is luckily not a threat to life, whereas other types of Ehlers-Danlos can be life-threatening. With HMS, because everything is more lax it means you are double-jointed, although bending yourself around as a party trick will make you feel worse! You are born with HMS as it is in your genes. Your body over-reaches/extends NATURALLY so you don’t realise you are doing it and this can then cause you to injure yourself easily and without realising. So your body is basically moving into positions that most normal bodies can’t do.¬† Also, because your muscles e.t.c are having to work twice as hard to keep everything in place it can cause chronic pain. As I have explained, I have it in my toes, my feet and ankles which give me a dull ache, my knees that really ache and if it’s really bad the pain spreads down my leg, my hips, my back, my neck, my shoulder and my elbows. All of these things hurt me everyday. The worst thing though is that the pain moves around. One day my knees can be ok and I could run around if I wanted, but the next day they can be so bad I have problems getting up and down the stairs. You never know where it’s going to hit you next. Of course, when you suffer from chronic pain everyday any injury is like rubbing salt into a wound. What else is interesting is that some people can have HMS and have no symptoms or pain whilst others can really suffer with it. I am lucky enough that my joints don’t dislocate but unfortunate enough that I have chronic pain everywhere and am often injuring myself. I just think myself lucky that I don’t have a more dangerous form of EDS! (this part comes with a thanks to hypermobility.org! They explain this better than me, but without them I would have had no idea what was actually happening inside me!)

However, the worst things about HMS are to follow. First being that you look perfectly healthy. Because people with HMS are EXTRA bendy/flexible we don’t look ill or in pain compared to someone who has arthritis and has to walk with a stick for example. We can do sports (if we’re careful to prevent injury) and such things that others can’t do. This can sometimes lead people to think you are a liar when you explain that you’re in pain or if you say that you can’t do certain things, like lift anything heavy, as in my case. Also, with some patients, they can even have problems convincing their doctors there is anything wrong because the pain moves around, something I would even have problems to believe if I didn’t live it, and of course in any x-ray e.t.c everything will look normal because we are born with naturally lax joints and muscles e.t.c. It took 20-odd years for my doctor to diagnose me.

The other downside is that it does affect your life and the things you can do. Sometimes if my shoulder becomes stiff and sore it prevents me from lifting my arm up very high. This causes me great problems when it comes to blow-drying or brushing my hair. Also, you’re not supposed to stay in the same position for more than 30 minutes without moving around. This causes me great problems when it comes to going to the cinema because you can’t just pause the movie to have a wiggle around!! If I wake up one morning and my knees and hips are particularly bad then going to see a movie is not possible for me. Otherwise I just think “fuck it!” and I go anyway. I pay for it afterwards but I’m not going to stop doing that! The other thing I can’t really do anymore is bowling. Not only does it make my back worse but it can cause me to injure my elbow and shoulder due to the weight of the bowling ball pulling on my arm when I throw it.

The last annoying thing is that HMS can give you chronic fatigue which I suffer from also. Because all your muscles e.t.c are working twice as hard it makes you feel physically exhausted! Sometimes, even after a long nights sleep, I can feel tired just 3 hours after waking! But you just have to pull through and get on with it!

I do think myself lucky that I don’t have something worse, such as Cancer. But sometimes it does start to get you down.

There is no cure for HMS/EDS at the moment. It isn’t a well-known condition with many doctors not knowing any more about it than you could find on the internet. The problem with this is a difficulty in getting treated. Those who are lucky enough to be near a HMS clinic (they are rare!) or are under a health professional who knows about HMS receive some form of treatment, whether it be medication or physiotherapy e.t.c. I, however, am not that lucky. I am currently receiving no treatment so I have to deal with the chronic pain everyday. I just try and exercise to build up my muscle strength to help prevent injury, as that’s all I can do at the moment. But I will be going back to my doctors soon to try and sort something out.

The reason for this article really though is the fact that I’m pissed off with the fact I have sprained the ligament in my left knee for the third time by…….. SLEEPING!! Yes, welcome to the world of an HMS-er!! I went to bed last night with no problem with my knee at all and woke up in agony this morning! So somehow I managed to do something in my sleep to injure it! So I have basically spent all day hobbling around and being miserable. But I bet you would have laughed watching me try to get down the stairs!

Anyway, if anyone is interested in learning more it is worth checking out the official HMS page here:

http://hypermobility.org/

The site is really informative and has helped me understand what HMS is about and what I can do to help myself.

Also, this short video about HMS/EDS Type III is informative and sums up the main issues of the Syndrome:

I hope that this post has been at least a little bit interesting and hopefully more people will know and understand what HMS is about. Most importantly though, I wanted those who read me to get to know me a bit better, so I hope that I have achieved my goal here and that you weren’t TOO bored! :-/

Next article will be a cracker, I promise! :)