Friday, 17 June 2011

TS truly sucks...


I had a long and leisurely lay in this morning.  It's been a busy old week by my standards, as I attended the committee meeting on Wednesday afternoon, and then spent yesterday morning at the hospital with my mum.  We had fun, strange as it may sound.  We arrived a little early at the world famous Queens hospital in Romford (famous for none of the right reasons, I might add), and we drifted into the cafeteria where we indulged in one of their delightful cooked breakfasts.  I hate to say it but they really are quite nice, I'm not just being sarcastic!  We went to the appointment, then had a browse through the Jewellery stall that was set up in the foyer (or is it an atrium?).  I found a lovely string of large wooden beads (that set off my scar delightfully) and honestly, they looked good on.  So my lovely mummy treated me to them, and I wore them all the way home. 

I checked my email and miracle of miracles, I've been offered a job interview.  I don't want to jinx it by saying too much, but if they can see past the illness then I truly believe this is the job for me.  Strictly speaking, I am too ill for work but I am still mentally desperate for a normal life.  So if they are kind enough to offer it to me, I am pretty sure I'd give it a good go.  An understanding employer would make a huge difference, so I shall take it step by step and see what comes my way.

I was in terrible pain all night, despite the oxycodone.  Sometimes the painkillers just don't kill the pain, and I spend the night writhing and groaning in my sleep, if I can sleep at all.  If it's particularly bad, then I spend the night wandering up and down, trying to find something to focus on other than the grinding creaking aching stabbing burning excruciating agony going on in my spine.  I even took up crochet as a way of distracting myself.  When you're in that much pain though, it's very hard to focus on anything at all.  But despite all of that, I woke up pretty early this morning in a not so bad mood.  I actually feel quite perky.  Granted, this may be because I've secretly stopped taking the lithium (shhhhh!!! don't tell the psychiatrist, Dr Dunne would be mad....).  But a little perkiness is always welcome.  I had my morning cough, which was productive.  Not that I like to gross people out, but this mornings secretions were all stringy, and some resembled rather gooey light green elastic bands.  Seriously, you can stick things to the wall with this stuff lol.  And this is despite the carbocisteine!  Can you imagine what it was like before?  I remember well, I had several respiratory arrests as a result of mucous plugs and blockages.  Deeply unpleasant and very traumatic. 

Anyway, I then sat down and had a look through my e friend's blog.  She has TS too, and I'm always really interested to hear how other people are doing.  She had a reconstruction last year, but sadly it hasn't solved the problem and she's still fighting to breathe.  I was hoping to read that she was doing better, but life is not being kind to her at the moment, and her life seems to revolve around hospitals and surgeries.  I wouldn't wish this illness on anyone, and I think the worst of it is that many people don't understand quite how limiting it can be.  I was at the train station in Romford one day, pulling myself up the stairs by my arms (because I was really struggling to breathe), and a woman who looked about 50/60 crossed over the stairs in front of me (they are pretty wide) and stood there is front of me with a sour faced look that said 'get out of my way'.  I said 'excuse me please', and she snorted through her nose and then proceeded to mouth off at great volume about how fat and ugly people such as me had only themselves to blame, and I could move if I wanted to.  I extended myself to full height, and for once stuck up for myself and said 'you can clearly move a lot easier than I can.  I just watched you walk the full length of these stairs under your own steam, with no support.  If I let go of this banister, I'm going to fall over.  So that isn't going to happen.  We can stand here all day, or you can move.  Now what is it to be?'.  And she went.  As I thought she might.  Sometimes I meet people who are rude and even aggressive because of my coughing and wheezing, but I don't think I'll ever get used to it.  It's bad enough being seriously ill, it would really help if people wouldn't abuse me for it as well.

I wish I could take my friend's pain away, but that's a skill I don't have.  I can only hope and pray that one day soon she wakes up and finds that something has changed for the better.  In the meantime, life plods on I suppose.

Right, enough of my cod philosophy for now.  Lunch is on the way, and I've requested a table and chairs through Freecycling, so I have to check if they've picked me or not.  Fingers crossed, lol, I really need the chairs!!

Have a lovely day, and hopefully we'll catch up later and I'll write something a bit more sensible. 

See ya later!

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