Friday, 15 July 2011


Morning all, I hope you are having a fine and lovely day.

I woke up early this morning, but wasn't feeling quite right.  Which is why I dozed in and out all morning.  I am awake at last, but still feeling pretty headachey.  I don't know if it's related to my chest infection, but I have been feeling very warm and just not quite all there for a few days.  I hope it passes soon, for I have business to deal with, lol.

I feel a bit disappointed today.  Sometimes in life, we put our faith and trust in people, and we respect them and their advice.  But then you find out something about them, and it totally torpedoes everything you thought or felt.  I don't quite know what to do with the information I was given, and in my present state, I am feeling a bit deranged and deluded, but in the deceived sense.  I made a decision when I was 22, that I would proceed with my life in a totally honest way.  I would not pretend to be anyone I wasn't, nor would I adjust my behaviour to suit other people.  And I would be nothing but honest about my illness.  This does have it's upsides; I no longer fear that anyone will 'expose' me for perceived past transgressions.  And I now have a reputation for being 100 percent open and honest.  People feel that they can trust me.  I take out my frustrations here, or in my diary.  I write a lot.  But most of it is just unloading.  Very little of what goes in my diary reflects real life, but what I write in my Blog does.

So my point is, this is me.  I am me.  I am 31.  I have three spinal conditions, which will eventually result in me being paralysed from the waist down, and most likely I will be douby incontinent.  I do not look forward to that happening, but I try and accept that it will come.  I have subglottic tracheal stenosis, which extends from the lower section of my vocal cords downwards, completely filling the entire length of my trachea, if left unlasered it would very quickly be fatal.  My trachea is dead.  The surgeons describe it differently, they say it is 'necrosed'.  When they put the stent in, it takes three times longer than it used to because the scarring in my trachea has turned the tissue to stone.  I find it terrifying.  I am now too unwell for a tracheostomy to be supported.  I tried living with a T Tube, but again, that had to come out.  I look absolutely fine from the outside, but my insides are a mess.  As a result of all the infections and serious illness, ventilation and surgeries, I now have scarring on my lungs, and what they believe is bronchiectasis.  They suspected it because I have a problem with producing very thick and very sticky mucous.  When this tried to pass through the stent, it became lodged, dried out and stuck.  They call this 'crusting'.  It sounds simple, but gross, but this becomes a problem because the more build up there is on the airway, the smaller the airway is.  And I have suffered a couple of respiratory arrests because of the blockages caused by thick mucous.  It was terrifying, and I still have nightmares now.  Who wouldn't?

I am sick of having to prove how unwell I am.  It makes me mad that this society demands proof.  I think we should all treat people with the respect and individual consideration they deserve, but nobody does.  I had some woman push me over because she didn't believe i needed to sit down.  I collapsed, with some help from her hand.  She was duly arrested and cautioned, but this is an extreme example.  If everyone could just take a day to think about what other people around them live with, we would all feel pretty humbled.

Sorry, my head feels a bit wooly, and I'm not sure how much sense this is making.  Take care and have a lovely day.  I will see you tomorrow.

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