Wednesday, 15 June 2011

Another day, another letter in support of tracheal transplants!!

So today I managed to wake up before 2pm, which is something of a miracle.  People tend not to realise quite how exhausting everything is when you can't quite get a full lungful of air.  The reality is that people with chronic tracheal stenosis (as opposed to the easily cured kind), tend to lose an awful lot of their day to sleep.  Right now I'm going through the nebuliser/medication ritual.  In the morning, it isn't so bad.  I take carbocisteine for the thick mucus produced by my lungs, and I nebulise with Mucoclear saline to try and keep my tracheal stent free from crusty secretions.  I've had a blocked airway quite a few times now and it really is no fun.  They shad of dusky purple blue that your lips go when you stop breathing really doesn't suit my colouring.   Next lot of medication are painkiller mainly.  I take carbamazapine for nerve pain in my leg.  When I originally fell ill, I woke up after several weeks in ITU and could not feel my legs.  It was a little bit terrifying, but made more so because I couldn't get anyone to believe me!  They realised eventually of course, because every time they stood me up I fell over.  But that's another story....  I now take Oxycodone, one 10mg and one 20mg, anywhere up to 4 times a day of each.  That is to help with the terrible grinding, stabbing, twisting ache of lumbar spondylosis.  Again, another story.  I take some ugly little brown tablets, known rather poetically as Lyrica, or Pregabalin.  And on top of all that I take Naproxen, which is a basic NSAID.  Repeat said drug routine at least 4 times a day, and you get an idea how much time 'being sick' takes up.  I no longer have those angry fits of 'why me?!!', but I really do resent the restrictions that my illness impose on my life.  I would trade it all in if I could have a normal life, with a boring job and the ability to go out for a day and not have to worry about pain and airway blockages.

So, what am I going to do with the rest of the day?  Well, the plan is to go to a committee meeting for an advocacy group that I have volunteered with for the best part of two years now.  I will admit to feeling slightly out of my depth sometimes, but I think they just use me to make up numbers.  It's fine, so long as they never let me make any important decisions lol.  I keep my eyes down and my ears open and every now and then I learn something interesting.  I haven't been for a couple of months (the meetings were cancelled for various reasons) so I am a little worried about whether or not I'll be able to keep my eyes open for the two hours.  I must go though, it is truly the only thing I do these days that's outside the house.  isn't that sad?!

And then I shall come home and watch Four in a Bed on Channel 4.  I'm absolutely hooked!  For those who don't know, it's a TV show where 4 couples/people who own bed and breakfasts (B and Bs) in the UK visit each other in turn and score their hosts by deciding whether or not to pay the full price of the room.  Basically, whoever gets underpaid the least wins.  It's so funny, they walk around with their noses to the carpet looking for dust and pubic hair left behind by other guests.  And the worst thing is, sometimes they actually find them!!!  Disgusting.  There have been a couple of really nice ones though, and I must admit I was tempted by the 14 room country house with luxury en suite rooms that charged a mere fifty to seventy pounds per room.  Amazing value, with or without breakfast.

We haven't managed to have a holiday since 2009.  My husband lost his job last year (owing to the recession, even work for pipefitters became thin on the ground), and there is nothing left from benefits to enable us to save up for one.  We managed for one year on my sickness benefit alone because we were in hope that work would come along.  We spent several weeks living on nothing but cheese and onion toasties, I'm surprised we didn't get scurvy.  We were paying full rent and council tax, so after bills, we often had only 15 pounds left to get through the fortnight.  It was very hard and I urge anyone else trying to live like that to contact the DWP and see what else you're entitled to.  Apply for everything, don't just struggle on because of misplaced pride.  That's how you freeze and starve.  I'd forgotton about that.  We couldn't afford gas last winter, so we had no heating.  Even on those days when it was minus eight outside.  It was something like minus 2 inside.  Terrible, it made me so ill.  Anyway, I hope that maybe at the end of the season, we might be able to get away for a few days to a caravan or something similar.  Just getting away from London would be nice.  I only flew for the first time in 2007, and that was my first ever holiday in the sun.  We went on a cruise around the Med, which was an amazing experience.  I am trying to make my brain forget it ever happened though, because when I do think of it I feel nothing but frustration that I will be unlikely to ever do something like that again, be it because of money or ill health.  Now I'm thinking 'it's not fair', lol..

So today I'm going to try and enlist the help of some more friends to write letters in support of this tissue engineered tracheal transplant.  I'm asking as many people as can to speak with their MP and ask them to write to the Minister for Health to try and find out what the hold up is.  They see it as paperwork and I think it is time they were reminded that there are lives at stake here. 

Have a lovely day, and don't do anything I wouldn't!!

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