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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Its A Tough Time For Me

As I sit and write this I struggle somewhat with how to start, in truth it has been an incredibly difficult few weeks for me on all kinds of levels.

For starters University is not going well, it’s not the fault of any individuals but in short I am not getting the disability support I need to be able to keep up with my able bodied peers.

Books are inaccessible, I can’t even find the books I need to look at in the library independently let alone read them.

I have library support time where support workers help me find the materials I need and the read the relevent content which I record as audio compleate with page numbers and all the referencing data one could ever need. From these audio recordings I can then make my own notes, copy down quotes word for word and complete my essays and other research just as well as any other student.

The current problem being that unfortunately The University’s disability support team are massively over stretched, understaffed and struggling to meet the demand.

I have in the last few weeks only been getting one or two hours a week of this reading support which has meant that I am seriously struggling to keep up with my workload in a big way. My lecturers are understandably concerned about my progress and my ability to cope alongside my peers and the whole situation is just leaving me incredibly stressed!

Aside from the academic problems I continue to have serious issues with where I am living, unfortunately for me I am in first year halls even though I am in my second year.

The freshers I live with are phenomenally selfish and have all year caused problems for Gus and myself. There have been weeks during this academic year where they have literally partied every night until around three maybe four in the morning. When they finally come home they are completely out of their minds on alcohol and who knows what else screaming their heads off. That’s not to mention the many times I have left my room to walk down the corridor only to trip over some shoes or another object that has just been left in the middle of the corridor or worst still discovered that they have broken a glass and not made any attempt to clean it up!

Recently things got to the point where they were finally given their final warning about the noise they make. Since this has happened things have improved slightly but I am still regularly kept awake at night.

Only being able to sleep for a few hours has a serious impact on my ability to function, I will be the first to admit that I need a lot of sleep to function normally and if I don’t get it I can struggle with even the most basic of tasks. A three-hour session on public relations is a serious test of my ability to stay focused after such a terrible nights sleep. I worry that the lecturers see me yawning my head off in sessions and think I am really bored or that I have been out partying all night when in fact I have been in halls tucked up in bed attempting to sleep through a heard of elephants running around the corridors slamming doors, playing loud music and screaming there heads off.

Last week things got particularly bad the freshers where having a loud evening and I had already called security earlier on in the evening who had ask the freashers to keep the noise down. It got to half past twelve and there were a group of them congregating outside my door already drunk making a right racket. I had had enough so poked my head out of my door in my PJ’s with no glasses on to explain that I had a nine o’clock lecture in the morning and that I needed to get some sleep. I then got what can only be described as verbal abuse back, very personally aimed around my disability. It’s nothing I have not heard a million and one times before, I reported the issue and it has been dealt with very seriously so I at least feel like I have closure on that particular matter.

Somewhat unsurprisingly considering all the stress I have been under I developed a virus that I have really been struggling with in the last week mainly I have just been rather nauseous but it has had one slightly more unusual twist. It caused me to break out in very bad hives, the skin on pretty most of my body turned bright red puffed out and developed little bumps that almost looked like insect bites. By far the worst part of this was the incredibly intense itching. It is incredibly hard to concentrate on Harbermas’ theory of the ‘public sphere’ when all your mind is really thinking about is how much you would like to rip off your skin in the hope that having no skin would help the itching – of course this is totally irrational! I can however draw a line under the whole affair as yesterday I saw a very nice doctor who gave me a very strong prescription for some antihistamine which has totally cured me and for this I am incredibly grateful.

As well as all of the above my life has run very far from smoothly, Gus and I had a serious incident that had the potential to end his career as a guide dog, luckily as of yesterday this is all sorted now and Gus will all being well continue to be my guide dog for a long time to come. Gus was also ill for a week with various infections, he had to have a week of very light work and was utterly miserable but is now once again fighting fit.

The relationship I was in has ended, we still intend to stay friends as we are already booked in to see Jon Bon Jovi at Wembley Arena in the summer and as we play on the same cricket team.

I am once again having pretty serious issue with my shoulder from September to January I was undergoing physio. I have now been booted out by the physio department for missing an appointment. It was totally out of my control as I had a really bad fall and could barley walk let alone trek for 30 minutes to get to the appointment, but rules are rules. Honestly in my opinion the physiotherapy was doing my shoulder absolutely no good whatsoever, I spent an age every morning and evening making sure I did my exercises to no avail. If anything my shoulder is currently worse than it ever was, nerves are being pinched which is as painful as it sounds.

So all in all I have had a very rough time of it all recently and in truth it has seriously got me down, there has literally been one problem after another and I am just hoping everything will turn out ok in the end. I am incredibly stressed which does not help matters one bit so I am trying to remain calm and not let the world around me bother me too much!

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