Monday, 28 March 2011

Defining tiredness

I've been finding it difficult lately explaining to people that I can't do things sometimes because I am too tired. It is frustrating sometimes, as I'm not sure if they think I am making excuses in order to get out of doing something.

However, then I realised that maybe it's because their definition of tiredness is different than mine. I guess I live with a level of tiredness everyday (some might call it fatigue I suppose) without really noticing it - I know my limits relatively well and that I can only do so many things in one day, unless I want to write off a chunk of the following day. This is my 'normal', but it probably isn't to other people! When I'm too tired to do something, it literally means I'm too physically exhausted to even sit up, whereas I guess for other people it just means that they need to drink a coffee or go to bed an hour early.

It's still hard to try and get that across to some people; I try so hard to be 'normal' and just like everyone else, I suppose sometimes they forget that my body doesn't really play by the same rules as theirs does!

Tuesday, 22 March 2011

Bad blogger!

Sorry I haven't posted in a while, I guess life ran away from me a bit! I caught a stomach bug the day after Pancake Day, which left me out of sorts for about a week, which means I am now mad busy trying to get as much work done before I finish for Easter - I have an essay due in the day I go home, then another three after the holidays so I'm hoping to get as much done as I can in the next week and a half so I can actually have some fun and see friends over the holidays rather than being chained to my laptop!

I don't really have much else to report today, I haven't been up to much apart from work, sleep, eat and TV! Roll on Easter is all I can say! :)

Tuesday, 8 March 2011

Justifying my existence...

Through the Trailblazers' Facebook page (the disability campaign group I volunteer with), I came across this (skip to 26:35 for the relevant part). For people reading this after the link expires, it's an interview with a mother of a severely disabled child, who was so desperate for extra respite that she phoned social services to take her into care, as she just couldn't cope any more (google 'Riven Vincent' for a huge number of news stories about it).

The part of the interview which got me riled up was a listener, who I assumed at the time had phoned in to put forward her viewpoint. She began making comments about how unproductive the daughter's life would be and that it was an unnecessary burden on the taxpayer to pay for her care. She even got to the point of eugenics, implying that in 'olden days' the midwive would have smothered the child if it was born severely disabled. The mother then had to basically defend her daughter's existence on live radio, saying that she was intelligent and able to lead a fulfilled life, drawing similarities abilities-wise between her and Stephen Hawkings. The listener then had the audacity to say, "Well he's not really done anything of worth, has he?"!!!

I think what really tipped me over the edge and led me to make a complaint to the BBC was that this woman was making these comments before the show on its Facebook feed, and the presenter begged her, even baited her to come onto the show, knowing full well what she was going to say. I'm all for free speech, but giving her a platform and basically encouraging these extremist views is completely insensitive, and in my opinion was just done for its shock factor. I really feel for the mother, who should not have been put in the position she was, she put her case forward articulately and was able to make the woman look the fool she was.

I think this really hits home for me because I am what some people would class as 'severely disabled', yet I feel I have an excellent quality of life and can give back to society as much as any able bodied person. Who is she to dictate what 'quality of life' is?

Anyway, rant over. In other news I was rudely awoken this morning by the District Nurse at 8.45am to check my pressure areas. I had booked my appointment for 10am, but there must have been some breakdown in communication between the Sister and the nurse who came, as she thought it was at 9am. I'm thankful in that it gave me a reason to get me up and out of bed relatively early, though I've not been massively productive.

Enjoy Pancake Day and International Women's Day! I will try to post some pancake related pictures later. I'm also taking up blogging for Lent, even though I've started a little early, I will try and keep it up through Lent and beyond!

UPDATE: Sorry it's so late, but here is my pancake - nutella, strawberries, banana and squirty cream. Blooming lovely, but did make me feel a bit sick afterwards!

Sunday, 6 March 2011

My first post

Hi blog world! This is my first post on my blog (kinda redundant as you can obviously see that!). Anyway welcome to my blog, a random look into the world of a disabled student with a bizarre sense of humour. If you want to know a bit more about me, take a look at the tabs around the top, which have a bit about my blog and my disability. If you have any more questions though or want any pictures of my equipment, post a comment and I'll reply or update the relevant page.

I guess I should tell you what I did today. Me and my volunteer decided we were bored and wanted to make some sort of cake. This was a good idea to me, as it seemed a good procrastination from my essay (not in until 1st April - deadline not near enough to put on enough pressure for me to knuckle down yet!). We did a bit of googling and found this - a fourteen layer sponge cake with chocolate filling. Thinking fourteen layers was a bit ambitious, we aimed for around six.

Four hours and seven thin layers of sponge later, this is the final result:

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