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Falling of the Edge of the World

Posted by Amanda Thorpe , 22 June 2012 · 7,254 views

On day I had a life and then... Na, too clichéd, need something different. Once upon a time there was a (insert description of me) and she was (insert description of my day and make sure you include that tall latte or two) then along came scleroderma (insert your own expletives here and make sure they’re a satisfying mouthful)...

In August 2012 I will have been diagnosed with systemic scleroderma and morphea for five years. In my early days medical professionals and others bandied about what I now call the medical myth, that after 3 to 5 years scleroderma plateaus, not only is this not my experience but I don’t actually know anyone else who has experienced it either. Sure some get better but it takes way longer than this and the getting better does not mean getting your old life back.

What you eventually do is take the remaining pieces and create a semblance of a life that hopefully can be described using words like quality, enjoyable, different, one tall latte instead of two...
If pithy little phrases aren’t doing it for you right now join the club. The truth is that I am tired of being tired, being in pain, being unable to plan anything, being unable to (insert your own descriptions and/or expletive here making sure they’re a satisfying mouthful).

I feel like I have fallen off the edge of the world (last pithy phrase I promise) and am waiting to rejoin it again at some future point. When I return, and I say when because I will, I have no idea what it will look like but boy oh boy, it’s gotta to be better than this!


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Parking Perils

Posted by Amanda Thorpe , 29 March 2012 · 7,045 views

Awhile ago my husband and I and I went to my favourite shopping centre, favourite centre because it contains my favourite clothes shop. Favourite clothes shop because of the fabulous clothes and just as importantly now fabulous customer service. I am always in my assisted wheelchair when we go and staff are so attentive and polite, in the changing room they always help me with zippers, buttons and so forth. They treat me with respect.

One of the hardest things I have found about being disabled is the necessity to have other people help you physically. It don’t matter how determined you are, if your body can’t, you can’t make it by sheer force of will. Having people prepared to help you out when you need it is worth its weight in gold but this vulnerability is galling when you are on the receiving end of the opposite behaviour.

On this awhile ago trip we were unable to park in a disabled space as they were all full, you know those spaces nearest the shop entrance clearly marked out with the attractive wheelchair logos that are usually filled with perfectly able bodied drivers loitering while they wait to pick up perfectly able bodied companion.

Anyway we parked in an ordinary space far away from the entrance and as Michael pushed me the distance to the entrance I noticed that a disabled space had become free. I suggested that we move the car into that space thinking if we legitimately occupied a disabled one it freed up a regular one for someone else. My husband left me in the empty, disabled space while he went to get the car and blow me if a car didn't try to pull into the space while I was sat in it. Picture it, disabled woman sat in wheelchair, sat in disabled space and car occupied by 3 healthy males tries to pull into it and park. Well of course they did it was the one displaying the attractive wheelchair logo nearest the shop entrance. The penny eventually dropped that I was unable to go anywhere so they drove off. I was irritated afterwards for ages, would they have liked the disability as well as the space? Methinks not.

Before I became disabled I would never park (well allow the driver to as I don’t drive) in a disabled space. I was too embarrassed to just be in the car, too conscious that someone could need the space and be denied it for what, laziness, convenience, selfishness, total lack of thought for A N Other? Take your pick because it’s still beyond me even after 5 years of disability.

Take care.


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Oh my, never should have said that!

Posted by Amanda Thorpe , 12 March 2012 · 5,263 views

Er, um, well it looks like I am now an ISN Blogger! How on earth did that happen? Well I asked a certain ISN Prez what she thought about it and hey presto here I am. Oh dear, oh dear...more for you than me trust me!

But I don't live an exciting life like CFM Babs or raise two fine children (stepsons all growed up) like Barefut so what am I going to blog about, well we will have to wait and see for sure!

All I can say for now is testing, testing, one, two, three...

Take care.






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