Night Mare

This was the evening after the morning before.

Another weeny gummy bleed. Where this one came from I'm not sure - think it started around mid afternoon - aaaah mebbe it was that piece of Soreen I had with my cuppa?? It is very sticky and probly sucked a bit of my gum off. Nice. Anyway, it was still going as I headed off to bed.

You shot up? says Ade.
No, says I.
You won't sleep, say he.
Oh but I will, say I.
I got my night nurse you see and with that I could sleep through a boobquake.

Where was I?? Oh yes, the clotting factor conundrum...

I was talking to a fellow bleeder at the hospital Tuesday lunchtime and we both admitted that where possible - we put off having an injection until it is absolutely desperately necessary. Now it's not like either of us have a problem injecting - we don't. Though I know bleeders who hate it with a passion and I really wouldn't want to be in their sensible shoes.

Injecting is:

• quicker than it's ever been (with these drugs companies reducing what used to be a squishy bag of plasma down to a couple of glass bottles)
  
• pretty effective (though not always so, being a Type III von Willie, that would be far too simple)
• almost painless (if I do it in my left elbow and through the scar tissue - not if I have to use my right elbow vein, but even that ain't too bad; hands - now they would kill me but I've yet to have to resort to that entry point)

So why put it off??

It's funny - when I have to do prophylactic treatment, i.e. twice daily injections to cover a period or a procedure of some sort, I set my alarm at 9am and 9pm and do my jabs no problem. Ok - so mebbe there is a little cursing and harrumphing but I do em - night after morning after night after morning.

So why is it different when I need to treat on demand??

I'm not sure.

It seems much more of an effort. Much more of a chore. A hassle. It bugs me frankly that I need to have my treatment. I mean why for God's sake?? Why do I have this damn disorder that means I need to stick a needle in myself to stop my gum from oooooooooozing like an insidious leaking leech.

Is it because it reminds me of my imperfection? But why would that be, as this process fixes me?

Do I hate injecting that much that I avoid it at all costs? Nope, once I get on with it, it's easy and generally restores me to a non bleedy state.

What then?

Am I just a lazy arse? Partly I think. My friend and I both agreed that when it comes to it we often just simply cannot be bothered.

Is it the cost?? Is it that I feel it needs to be really bad to warrant injecting? I have access to this treatment that not everyone with funny blood has. Sometimes yes, I think I postpone longer and longer. I wait - wait for the bleed to continue past 5-10 minutes normal bleeding time, past 1-2 hours slightly annoying bleeding time, onwards through 3-4 hours really annoying bleeding time, we reach 8 hours and I realise that I'm still oozing. Then do I inject??

With my gums - I sometimes wait til 12 hours before I jab, 24 hours. Why do this?

Any longer than 10 minutes is abnormal, should I not just inject once that has been breached?? Why wait so damn long...

You know, sometimes I think if I just ignore it, it will stop. If I don't think about the bleeding it'll just clot up and a few hours later I'll go - "Ooo, a blood free gob! How lovely." Very occasionally I find that happens, and a bleed I was previously aware of has miraculously gummed up of its own accord. Another reason to put off the prick.

Of course, should I be bleeding at a more profuse rate - period pace for example - I will get on with it. I don't sit around gushing. (Except over a really luscious piece of cake - and even then I'd stop to shoot up if I were bleeding over it.)

Mebbe it's just I judge the oozers as not bad enough to treat initially. They are just something I should accept and not treat unless they hit 12 hours? 24 hours? It's a valuable treatment - should it be saved for more extreme circumstances. Praps I'm not truly suffering unless I'm swallowing blood for a significant number of hours?

But why should I accept any excess bleeding even if it is an infinite dribble?

Just get on with it - shoot up and shut up.

Mucky Mush

This was the state of me when I woke up this morning.

Gorgeous right??

My tongue was more gory but it's rude to poke that out without a warning. This is the morning after a night on the towels. Actually it wasn't that bad. No towels required for drooling blood - just a cast iron stomach from gulping goo.

I have been doing prophylactic injections for my latest period but stopped those yesterday morning when things eased off down below.

It amazes me however how quickly things get back to normal, or in my case - way below normal. Last night my gums bled from when I brushed my teeth at around 10pm, until after I got up at 9am this morning. My lips weren't too bad really. They have been known to completely stick together, so much so that I would win any sponsored silence by a very clear length. This morning they were, as you can see, just a little bloody. The way yours might look after a few too many red wines. Not how I would like to answer the door admittedly but far from scary to passing passersby peeping through my curtains.

Luckily, as is sometimes the case, things seemed to clot off once I'd had my breakkie, mebbe it's the ice cold milk on my crispies?? I didn't need to shoot up this time.

And therein lies a common conundrum - to shoot up or not to shoot up - that is my question...

NonSense

Sometimes I hear singing in the silence

Sometimes I see colours in the dark

Sometimes I feel the warmth of a hug though I'm alone

Sometimes I sit in sunlight,
surrounded by people,
and am deaf, blind and numb