What Is Hypermobility Syndrome?

This article really sums up my experince of joint Hypermobility, its written by the fantastic people at the Hypermobility Syndrome Association (HMSA).

Below is a brief quote from the article that neatly sums up what hypermobility is.

However some hypermobile people can injure their joints, and their ligaments, tendons and other ‘soft tissues’ within and around a joint. This is because the joints twist or over extend easily, may partially dislocate (or ‘sublux’), or in a few cases may actually dislocate. These injuries may cause immediate pain and sometimes also lead to longer-term pain.

The majority of people recover from an injury though this may be slower than normal. Some hypermobile people, however, either recover only partly or continue to repeatedly injure various parts of their body. This is one presentation of JHS.

These problems can interfere with daily activities, schooling, work etc. The pain associated with this can become widespread and persistent and might initially be diagnosed as or confused with another condition called Fibromyalgia.

As you may have seen if you follow me on twitter I dislocated my thumb on Friday evening. I did this doing something simple that would cause no problem for most people – tearing off a piece of duct tape!

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Climbing barriers repeatedly

This year at university has been great, but filled with issues and problems and barriers to my learning.

It is important to mention at this point that there have been some fabulous people, and some committed and brilliant lecturers who never fail to meet my access needs and think of me in every circumstance.
Then there are those people who don’t help at all, who for  a time could not possibly produce a large print hand out for me… until of course they were reminded by me of a little something known as The DDA (Disability Discrimination Act). After that shocker people started getting me large print handouts, and copies of power point presentations as they happen so I actually know whats going on. (finally)
That was one major issue resolved for the most part, it took 8 weeks but hey-ho sorted now.
There have however been countless issues…. one after the other in a near constant stream. Every issue is another barrier for me to battle to clime over, wonky legs and all!
Climbing over these barriers and battling to insure that people understand, is quite frankly wearing me down. 
Most of the issues I am facing could be avoided, a little extra planning could go a long way or a little organisation!
The most recent thing that has happened is the start of semester 2, it starts on Monday and I am expecting another bumpy ride at least in the beginning. The time table has completely changed, I have new staff teaching me and new rooms to find. All of this is going to throw up issues,  I am expecting that there will be glitches and I am fine with that.
To try and smooth out issues before they happen I have asked that all my new lecturers see something called a ‘faculty form’. Basically the faculty form states what ALL of my disabilities and conditions are, it states what I need in lessons and spells out the basics. 
I would much rather people know that I am disabled before I walk through the door it allows them time to plan there lesson and avoids embarrassment.
Well I emailed the people concerned as a little don’t forget to look at my faculty form, I have now received a email, that I was copied into from the faculty office with a word document that I produced at the begging of the year that concerns my visual impairment, I was at the time trying to simplify things purely relating to my VI.
Everyone always forgets my other conditions they may be marginally less significant than my Visual Impairment at this moment in time but that will not always be the case, I would rather people where prepared.
There was no mention of my bone condition (the wonky legs and hyper-mobile joints), the one that makes standing still in the same place for periods of time difficult, makes me wobble and makes stairs tricky.
There was no mention of my mental health, I may be in recovery right now but I am still receiving treatment on my way to being fully well again without medication.
I have come to the conclusion they either don’t understand what my faculty form is, or that its filed away somewhere and they can’t find it.
I don’t get it  the faculty form is the most basic and simple of things all I want is for all my lecturers to see it, surly it s not that difficult.
It may be wearing me down but I will just have to keep climbing over the barriers.
Can I also say a big thanks to all the people out there who have ever tried to remove an access barrier from any ones path, your actions make all the other barriers seem achievable and remind those of us who have to climb the barriers that there are people looking out for them.

Change will happen to ME

It seems strange to be writing about change as I have just changed the layout of this blog, it seems to be creating a little sub theme, but the change I am referring to here is a life change.

It’s at this point I need to mention Beth and her blog ‘Screw Bronze‘; I have been following Beth’s blog ever since the start of the Ouch project and she is a truly fantastic example of a human being, if you do nothing else today just pop over to her blog and have a read. Her latest post titled ‘Badminton, illness and change’ has really hit me and helped me with a change I am getting to grips with right now.
As I am sure readers will be aware I have a bone condition in addition to being VI its that (not so) little thing that everyone ALWAYS forgets about, but trust me I never forget about it!
My condition has always been one that is likely to flare up and deteriorate over time, I have always known this but today I have come to a bit of a milestone.
After walking down The (EFFING) Eiffel Tower and then yesterday (just as things where improving) managing to slip over in the mud I am having a very serious flare up.
My left hip and knee take it in turns to be very painful and I am really struggling to balance.
I have hit the point I always knew would happen, it is time to obtain a walking stick.
This is for me a bit of a big thing, I am possibly being a bit pathetic but now the time has come I am finding it rather difficult.
People will see me and Gus and then a stick I’m worried about what will go through peoples heads, questions they might ask and the reactions of my friends, acquaintances and complete strangers.
Reading Beth’s blog has made me realise, its just an adjustment to a new normal for me and everyone else, I have no need to feel self conscious or concerned about peoples perceptions and prejudices.
I am ME; a stunningly beautiful, 20 year old, independent. visually impaired woman who sometimes needs to use a stick to get about and more importantly I will not be ashamed of what I am.
OK its a change for me to think about using a stick, but it will only be a change for so long, and then it will become the norm, nothing will be different.

Ouch! The Streets, and a bit about me

[Wow yet again it appears to be quite some time since I last blogged, I really am getting lazy so am as of now going to commit to keeping my blog up to date.]

 

Ouch!


I have no excuses now for not keeping the blog up to date, the Ouch! Guest blogging program has been put to an end with the redesign of there website, so I am no longer writing for Ouch! I still have a webcam that technically belongs to them so you may well see me on Ouch! again in the future. 

Talking of Ouch! they have recently re designed there website and I would encourage anyone involved in web design to go and take a look at what a fully accessible website CAN look like. 

Lots of websites these days claim to be accessible to people that are visually impaired by offering the option of changing the text size, however in most cases this completely messes with the page layout text becomes crowded and overlaps other areas of text and usually becomes unreadable, the Ouch! website with its new design is fabulous!

The Streets 


Ok a band I’m really loving at the moment would have to be The streets, for anyone that has not heard there audio album offering I would seriously recommend it there album, is titled ‘Everything is borrowed’ It’s really worth a listen. One of the, I think lesser-known tracks on the album is this one the lyrics of which I have copied and pasted especially for you!

The strongest person I know – The Streets


One of the first things about you I did see

Is that you verse your views quietly

When nature verses truths I get violent feelings

But softly time will reply that’s wise

 

A delicate gesture of why you see

The best route through this being right through here

But met with a cute blind snide of fear

Best to go along with their idea

 

But , you gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

After taking the worst route, blatantly

Bang on cue we manage losing way

But in a squirmy backed and screwed up way

They actually managed passing you the blame

 

With that mad man wrapped with rage

Even then your temper stays exactly the same

And in that manner is the manner you stay

Beautiful person that’s happily unchanged

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

In the heat of speech

Your words improve

Right out of reach in my stirred up words

But every time they f**king blurt out drool

I’m noticing they’re all learning from you

 

Cos even though they know they cursed you

They should’ve admitted that they were fools

The next time they’re wanting to work things through

The very first person they turn to is you

 

Cos you gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

On a personal level


Well how am I? Now there is an intriguing question! I have had a few problems of late with my existing bone condition; in short my knee is playing up quite substantially. Approximately 2 years ago now I had a seriously large amount of physiotherapy on the knee in question, the effects of which would appear to have completely worn off. So here I am again feeling old beyond my years and in pain. I have now seen a doctor who has unfortunately not done a lot about it other than give me a prescription for 5 lots of Tubigrip and painkillers.

 

My problem with this is that its not going to sort out the long term issue (I am aware that nothing will do this completely), painkillers can become addictive and don’t alleviate all the pain very often and Tubigrip is fine as a temporary thing but the way the doctor suggested I should start wearing it all the time. This is a problem because Tubigrip is very flexible and elastic, it does not stay where it is put and with the knee joint in particular it creases up in the bend of the knee and digs in causing more pain.

 

Technicalities aside it is still essentially the same thing my bone condition and joints deteriorating, I’m not going to try and be upbeat about it, I’m going to be honest and say it’s a real blow, particularly as I have just started playing blind cricket again.

 

Other than all that I am doing ok, at the moment struggling slightly with a complete lack of creativity but I will get through that.

 

It could be worse

I keep reminding myself of this little mantra

It could be worse