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Chronic Illness

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Well, thought it was important to give some more information regarding my journey of me and my condition.

I was born in 1986.  Odd thing was, that when I was first-born the doctors thought there was something wrong me then… a nurse noticed that I held my legs rigid, which apparently is something which newborn babies are not supposed to do…

The doctors sent me for a brain scan when I was 2 days old… but nothing was found.

So, in any case had a pretty normal childhood, well, apart from my intense phobia of heights.  All of the experts say that phobias are learnt, however, I never had a bad experience with heights… strange thing is when I was a baby, my Mother took me for a check-up at the doctors.  When she tried to put me on the bed that you have at doctors’ surgeries, I started to scream and instantly grabbed onto my Mum  and wouldn’t let go.  Instinctively, she put the baby mat on the floor and laid me down… and I stopped screaming!!  Seems as if I have had a problem with heights from birth.

I remember from childhood, I also had a problem with standing on anything which is even slightly high up – even those long benches you find in gymnasiums which aren’t even that high from the ground… it was like whenever I stood on one I was unable to focus properly and felt like everything was moving sideways…

Then at 8 years, old during a trip to a DIY store I had my very first dizzy spell… felt as if everything was moving and that if I hadn’t grabbed onto something I would surely fall.  Had a few attacks after that, so was sent to the doctors’ for tests… all came back normal.  Noticed that the majority of dizzy spells that were happening to me was brought on in places which had wide open spaces and especially those with high ceilings.  Even now I have major problems being in places which are very open and those which have high ceilings… the current train of though of why these type of places bother me is some a problem with perception and how the brain processes information being received from my surrounding environment.

Anyhow, as it became more frequent I became panicky and anxious when these attacks would occur – I was only 8 and hadn’t a clue what was happening to me?  And as the doctor’s couldn’t find a cause I was labelled with an ‘anxiety disorder.’

Fast forward several years, and the dizziness had become much more frequent and wasn’t able to go anywhere without the aid of another person – managed to complete a Psychology Degree but had to have support to do so, such as having a ‘Buddy System’ in place taking me from lectures and a designated place where I was picked up by someone.  As the dizziness became more frequent, I knew deep down there was something wrong other than an anxiety disorder and had to fight to get referred to a neurologist who eventually diagnosed the long-standing brain stem lesion.  And in terms of the spastic paraparesis – have always felt stiffness and weakness in legs especially during sports at school and when walking – but always thought it was normal as I hadn’t know anything different!!

Anyway, that’s all for now.  Please feel free to leave a comment below.

Hello to my first post of my brand new blog.

Just a little about me … I am 25 and from a town in South Wales, United Kingdom.

A little over a year ago, or is it two??  Anyway, I was diagnosed with a long-standing brain stem lesion.  What is that you ask?  Well, to answer that question, a lesion is by definition any abnormal change involving tissue or an organ through disease or injury. With mine, it is basically scarring on the brain stem.  The brain stem being the part of the brain that sits right on the bottom of the brain connecting the brain itself with the spinal cord.

Diagram of the Brain

Am not sure  about all the technical jargon involving the brain stem, or indeed exactly the part of which the scarring is located.  But for me, the lesion causes, and has caused since the age of 8 chronic and disabling dizziness – the sensation that the world around you is moving, for many this sensation feels as if the room is spinning around… although for me it generally feels as if my world is pulsating back and forward… back and forward.  And the general feeling of disequilibrium… not of being stable, as if at any minute you are going to fall.  For example, when standing up, and for many of you, you can stand there completely still like the Queen’s Guard you see outside of Buckingham Palace.  However, in my case I am unable to stand still, and instead my body sways in a back and forward motion.   The dizziness used to come and go in sporadic episodes, but now as my brain has changed and grew my illness has progressed and now I am in a state of disequilibrium 24/7.  The vertigo or ‘the sensation of the room moving’ comes and goes in episodes, although these episodes seem to be much more frequent than they have ever been.

The brain stem is also important for balance, and unfortunately for me do not seem to have much balance!  As a consequence I fall regularly and am unsteady on my feet… so if you ever see me on the street, I am not drunk, OK??

As well as those issues regarding balance and the dizziness, I also suffer from something called ‘spastic paraparesis’.  Spastic paraparesis causes muscle stiffness and weakness in the legs, in some cases, which has started happening with me can affect the arms also.  The SP has meant that my legs have become very stiff, making it difficult to walk and causing discomfort and pain and as they are weak I am unable to stand for any more than 10 to 15 minutes before they collapse from under me.

Well, that’s it for the first post, folks!  I’ll be updating whenever… more about my condition, more about me, commenting on stories that affect me, that kind of thing…

Hope you enjoyed… and feel free to comment too…

 

Origin of Image: CancerHelpUK

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