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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What’s Considered a Faux Pas?

Never grab me, its my biggest hate, makes me jump and immediately puts me on the defensive.

diaryofamarriedblindwoman

It is understood that people are just trying to help sometimes. But here is a little insight to what should be avoided when in the company of blind people. First, please don’t grab (us or our canes). Imagine being blind folded and being grabbed by the arm. It’s very uncomfortable. Next, it’s perfectly acceptable to offer assistance. One blind person may need it where another may not. If they decline, don’t take it personally. A lot of us wish to do as much independently as possible. Also, there is no need to shout. While blind and deaf sometimes go together, they don’t in every case. Most people who are “deaf-blind” will inform you if they can’t hear very well. Last, if you plan to offer anything, offer an arm. If they want it, they will take it. If not, verbal direction may be what they’re looking for.

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Day 1 – I’m Not Giving Up for Lent!

So we have seen another Shrove Tuesday (Pancake Day) go flying by for another year. personally the pancakes are always more of an appeal than valentines day as I’ve been single and bitter for a while now.

So today is obviously Ash Wednesday when christians traditionally vow to give something up for lent. Lent lasts 40 days the list of things I have tried and failed to give up in the past includes; Carrier bags, chewing gum and caffeine.

I’m not going to lie and fluff it up but every year I totally fail in my efforts, I forget my bag for life, or turned up to uni half dead with a cold and totally forgot to order decaf – I think he longest my efforts of giving stuff up have ever lasted is about a week which is lets face it pretty pathetic.

So this year I’m trying something different, I’m going to try and write a blog post every day for the next 40 days.

The way I see it Lent is a commitment to change, whatever a person decides to give up its a challenge and something difficult. So I’m turning the tables and taking something up for lent, again I’m making a commitment, it will be challenging and difficult for me to come up with and plan a blog post every day.

Other ideas I’ve seen around the internet are things like donating money to charity every time you buy a newspaper for the next 40 days or walking to the corner shop instead of using the car – its not always about giving something up.

So is there something you want me to blog about, an issue that’s on your heart? A particular scripture that sums up the period of lent for you? or a challenge for me to make an interesting blog about something particularly boring? Get in touch and I’ll try and write about it*

*Disclaimer this does not guarantee I will accept suggestions/challenges!

 

Wow Excitement at geekish levels!

Well I appreciate this post will bore most of you in to a stupor of non caring existence ant that your opinion of me will perhaps change to one that sees me as some who blows their own trumpet. This is a risk i am willing to take because I am proud of my achievements!

I should explain for the beginning – Way back as a teenager in secondary school I was started on a programme of touch typing using Mavis Beacon Teaches typing. I used this software once or twice a week to help me learn to touch type. At the time I hated it and sometimes sat at the computer on my own doing nothing except possibly eating the bar of chocolate I had stowed about my person, of course I quickly lurched into action if there was a teacher around! Some days the cheating was impossible and I kind of liked the idea of being able to type really fast without looking at the computer keyboard, plus my parents and teachers regularly told me how important the ability to type would be in my life – for all the skiving and the boredom I did take it seriously! Even back then I knew that my hand writing was incomparable to even my peers with the scruffiest writing, I often struggled to read my own hand writing and positively felt sorry for my teachers who had to read anything I had written in a hurry.

Progress was PAINFULLY slow but I stuck at it, my journey was helped greatly but the sudden emergence of (as it was back then) MSN Messenger, I guess this increased the amount of time I spent typing even if I was hunched over the computer keyboard looking at the large print yellow on black keyboard stickers!

Bare in mind at school and to an extent college I was expected to hand write during class, most homework assignments had to go into our exercise books at school, My typing was considered to be at to infant a level for me to be eligible to use a Laptop in classes, this is probably true it was probably not yet faster for me to type than it was to write but I perhaps feel for everyone’s sake it may have been easier for everyone to read if I had typed it. Eventually I must have been in year 9 or maybe even year 10 my typing was considered fast enough to warrant me being loaned a laptop, a whopping 37 words a minute (WPM) I belive. The first laptop I was given I eagerly carried home, turned on and it crashed, I got a blue screen of death and then it turned itself off. It was replaced a few days later by what can only be described as a BEAST of a laptop, it was incredibly heavy and brick like, the power pack was quite possibly the size of a standard house brick and equally as heavy.

So anyway back to the topic in hand since using a laptop more first at school, college and then full-time at university and for play my typing speed has improved greatly.

I got an incredibly sense of nostalgia when whilst wandering thought Apples new App store I came across Mavis Beckon teaches typing ’11 ultimate edition.

I was however disappointed to discover its impossible to make the practice fonts bigger in this new edition, meaning I made mistakes because  I could not read what I was supposed to be typing unless I hunched with my head very close to the screen which is not good posture for typing! As a result my average WPM scores were incredibly disappointing!

However there is a silver lining to the situation here. I discovered this evening that the Mavis Beacon software has a built in visual typing gauge that can be viewed whilst you type in any document or frame.

It has spent most of its time whilst i have been writing this sat around the 80 to 100 WPM mark, the scale only goes up to 100 WPM.

This is exciting! considering the adverse human being speaks at roughly 90 words a minute this is a very good thing.

I’ve Had A Needle Stuck In My Eye AGAIN!

It’s official on Tuesday I visited the eye unit and had my second injection of a drug called Avastin.

The aim of this needle poking is to make some blood vessels at the back of my eye that should not be there wither and die! It’s these tiny blood vessels that cause hemorrhages that damage my Macular that then lead to vision loss.

The process of being injected involves having lots of rather stingy local anesthetic eye drops placed in you offending eye. Then the whole area is cleaned with orange surgical grade antiseptic including the eye-ball. Then more this time slightly less stingy anesthetic eye drops. It’s at this point things get interesting a clip is then applied to hold both the upper and lower eye lids open, this is not to fun and I did feel some discomfort all the way along with the clip on my eye this time.  The big guns then come out local anesthetic is then injected underneath the cornea in the area around where the injection is going to go, this also stings a bit.  Finally it is time for the final and biggest needle yet the one containing the Avastin. The only way this can really be described is its like someone poking you in the eye with a needle the initial area where it goes in is numb but as soon as it pierces the white area of the eye it hurts.

Upon leaving the hospital I was given the advice that my eye would probably hurt later and that I would probably need to take some painkillers inside my head I was thinking actually I need some right now!

Tuesday and Wednesday my pain was on and off pretty bad its like someone has punched you hard in the eyeball alone, in effect your eye is bruised. I will say this time I looked less like something from a horror movie as my eye did not go blood-red.

Blinder

Well readers as you may well be aware I have, simply for ease of understanding labeled myself as a blindie for some time. When you refer to yourself as a blinky most people of a certain age think you are talking about a cartoon koala bear not describing your visual impairment as partially sighted. So blindie has worked to convey that sense of hey I’m visually impaired it’s not a taboo subject and I am comfortable to talk and even joke about it.

I have been partially sighted since the day I was born, well I was actually born with very little sight at all but after some fantastic surgeons working there magic on my tiny peepers all I have ever known is partially sighted.

Growing up it has been drummed into me, quite rightly by various medical professionals, my parents, teachers and sometimes even friends that I have to be careful about a bang on the head. This is because if I sustain a serious blow to the head I am at a higher risk than your average human being of detaching a retina at the back of either eye or worst case scenario both!

I never expected anything more than this, I am a realist and I am grateful for what I have. I also never really expected anything less for most of my life I thought everything was going to stay stable and  be the same for ever. Oh how naive I was!

Last Monday I went for my appointment after I had the hemorrhage a few weeks ago. The very nice consultant, who incidentally reads my blog here (hello Mr N) confirmed that I have had a bleed and the general state of my eyes,  especially the right one is not good.

We decided together that I could now be registered blind, before that moment I was partially sighted the way I had always been growing up and suddenly I had the new label of a blind person.

The thing is the more I think about it the more I realise that it is just a label but this is very difficult to comprehend.

A tiny part of me is devastated which I think is only natural but in reality the change of terms means almost nothing. I have not changed as a person my life is not going to change much if at all with this new label but it feels very strange.

I guess to sum up everything quite simply its a blow and a shock but it could be worse and it’s not the end of the world.

Positives will come out of it,  I have the joy now as a person registered as blind to a half price TV license so one day when I have enough space and money to buy a TV I can look forward to paying less license fee!

Further Vision Loss

On Sunday I had been back from Church say about 30 minutes when I noticed what is affectionately known in the eye business as a floater.

For me given my previous Sub-Macular hemorrhage this rings alarm bells in my brain.

After a brief spell of panick and trying to work out what to do with myself I rang ahead to Eye Casualty to let them know I was going to head in.

One £10 Taxi fair later I was stood outside Southampton’s Eye Casualty but was totally unable to go in. Not because of some anxiety driven panic that froze me to the spot but because there was a keypad with lots and lots of buttons and a small intercom with yet more buttons on it just above. There was also a very small water damaged sign that I presume said something important but I honestly have no idea. So there was only really one thing for it, I stood there and pressed buttons totally randomly and hoped for the best… This was far from successful and after some time had elapsed I pounced on a woman walking past and asked her to help.

When I got in I announced my presence to the nurse booking in patients and composed myself. This is necessary because the Eye Unit complete with Eye Casualty can be a stress full and incredibly dull place. 

Regrettably I went alone, just myself and Gus. I could have really done with someone to come with me but also did not want to worry my parents or friends on the odd chance that it was absolutely nothing to worry about. Not to mention the inconvenience to my friends if I rang and asked them to come down – I realise now this was totally stupid but it’s how I felt at the time and I guess I was simply in denial!

After some time the tests commenced: Distance vision test, blood pressure, blood sugar, pupil reaction, intraocular pressure (IOP) and ultrasound. I was rather intrigued by the ultrasound scan, I had never had one of those before and did not know it was even possible to scan an eye, but it is.

By this point I knew what it was and was simply waiting to hear it from the doctor.

Several doses of pupil dilating eye drops and 20 minutes of waiting for something to happen to my pupils. The doctor was able to get a semi-decent view of the back of my eye and confirmed a new haemorrhage in the back of my eye.

This is obviously pretty devastating, its means further deterioration and uncertainty. There has already been damage done to my vision by this bleed and I am left to wait to see what happens.

So all this happened on Sunday and I was been told if I have not heard anything within 2 weeks to give them a call and chase things up. Considering the state of the administration at Southampton Eye Unit and the problems I have had with appointments previously I don’t hold out much hope so have already phoned my Consultants secretary to chase this up.

I am yet to see or even hear from a consultant about this, so I am left in total limbo with no idea what is going on. I have no prognosis for this bleed, no idea whether I will again be able to have off label treatment with Avastin and even more worryingly no idea if the blood vessel at fault is going to leak more whilst I am left to wait.

I am incredibly thankful to the guys at the Solent CU and Church that have already prayed for my recovery. If you are so inclined and have the time please send out a little prayer for me.

  • The Previous haemorrhage can be found in the following posts (In order of appearance)
  1. Today’s visit to The Eye Unit
  2. Eye Casualty
  3. The Consultant Calls
  4. I am going to fight
  5. No Pretending
  6. The effect of it all
  7. I’M GOING TO GET A NEEDLE SHOVED IN MY EYE!
  8. Avastin is go!
  9. When they said ASAP they meant it
  10. My day on the ward

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!

I Need Some Help…

This is a little random but some of you will know that I am a bit into art. It’s a bit of a long and in places painful story but in the last few months I have really got my creative juices going again after a long time where they where absent.

So why do I need your help?

I need a name for the blog I am going to create to host my drawings.

I have no idea what to call it; I think influencing factors when choosing a name need to reflect who I am, my disability(s) but also be light-hearted.

So come on people let’s get going with some suggestions!

Train Travel floored

I write this sat in a hotel connected to a garage in the middle of nowhere the hotel has wifi but charges a whopping £5 for one hours access – which I refuse to pay.I am in the middle of nowhere a £8 taxi journey away from Didcot train station, I am here unpaid on a course for the job I am doing at university this year.

To get here I got a volunteer to drive me to Fareham station where I met a support worker and got on a train to Southampton from there we got on another train headed for Oxford, we had to get off at Reading station and change trains again to get to Didcot.

All was going well until we reached our second train, upon boarding it became apparent that the train was hideously in accessible. We asked where the wheelchair area was assuming there would be more space, on getting there we discovered that it was literally an empty space with a small table off to one side.

The train was rather busy and full of older people, who where insistent on sitting down first and finding there reserved sears.

This created a battle field incorporating train staff, my support worker, me Gus and a million grumpy old farts that where fully prepared to pushed there way forward not caring who they ran over with there suitcases or stepped on.

My support worker put her bag down on a chair closest to the wheelchair bay only to turn around and discover a woman had picked it  up and was about to move it somewhere else. There was carnage in the carriage, people and bags everywhere refusing to move to let other people past because there booked seat was that way and they wanted to sit in it now.

The train was delayed by 6 minutes whilst the gridlock continued with train staff and other passengers shouting at large amounts of old farts to move out of the way and let other people such as myself past.

Eventually after much shuffling and complete disregard to other people the large groups of old farts sat down.

Then I discovered that the wheelchair seat had no seats around it, basically there would be space for Gus but not for me. None of the seats around it had any room for Gus to lay under them so what was I supposed to do?

In the end I sat in the wheelchair space on the floor for over an hour and a half, I spent this time having poor Gus being stepped on even after I had warned people that he was there, I was also stepped on, people tried to block us both into the space with bags and even tried to wheel them on top of us.

I remain utterly disgusted by this, I was basically a piece of luggage, one particular old fart of a commuter stepped on Gus  after I had already warned her that he was there, I pointed this out to her and then she patted me on the head and apologised, I was fuming!

Then the guard came through the train and I asked him a question he turned around and answered talking to my support worker instead of to me, referring to me as she and stating that they have special assistance “for people like her”.

I snapped I told him to talk to me not about me I was on the verge of rude but I had had enough by that point.

I have never had a train journey that bad, I am honestly appalled by it I have heard horror stories from other disabled people that have had horrific train journeys, but I have always felt positive about travel by train and enjoyed it as a largely stress free experiences, but now the tables have turned, my journey was utterly horrific thanks to the train company for not training its staff as to how to talk to disabled people, not making there trains accessible and the other passengers being horrible old farts who only cared about themselves with no consideration for others – I hate people that are so selfish!