Sunday, 20 June 2010

Common Sense

I have decided that I need to get in control of these stupid lungs of mine.

After much consideration, I've decided to whack my steroids up to 60mg for a few days, and gradually wean down.

I'm really not happy about this at all. I don't like taking them, I don't like the side effects (blurred vision and increased appetite mainly), but for a short while I think I'm going to have to put up with it :-(
I can't continue the way I am, breathlessness and wheezing stopping me from doing anything during the day, and impacting upon my sleep at night. I don't want to end up in hospital, I've been putting it off for so long now whilst trying to stay on as low a dose of Pred as possible. Also affecting this decision; I've been getting increased cardiac pain during the night, enough to concern me :-(

I used to ok until I dropped my Pred BELOW 20mg, now I struggle ON 20mg - not good!!

Anyway, time to use some common sense and regain some control. 60mg of Pred it is for a few days, then a sensible weaning down schedule. Hopefully this plan will work, otherwise... well I just don't know.....

Thursday, 10 June 2010

Long, rambling, rant........

I'll prefix this with saying, I don't know if anyone actually reads this, but if anyone does, I'm sorry that all I do is whine! I don't think I'm like that in real life....

Sometimes I just want to shake myself!!

I have a genuine fear that I'm going to die during an asthma attack, and this is not an irrational fear considering how severe/life threatening/near fatal my stupid asthma attacks are.
BUT what do I do to try to prevent this outcome? Absolutely nothing!!
Seriously, I am SO angry with myself today.

Last night at about 11pm I start to get chest pain, use my GTN spray which does help, but I still feel 'unwell'. It's hard to explain, just 'unwell'. I have a letter from my consultant, copied to the ED consultants, that states if I feel like that I'm to go straight to ED, even if I'm not having an acute attack, and be monitored so I'm safe if I deteriorate. (chest pains and 'unwell' feelings often occur before I have my very bad asthma attacks).

Well, I live almost 30 miles from the hospital, I live alone, my car is parked around the corner up a hill. Getting to the hospital is not easy.

So, I go to bed. Cue asthma attack. 1am it starts, I spend the night checking my O2 Sats, hmmm how low should I let them get before I call an ambulance.... 86%? Nah they'll pick up, it's fine (let me add, I know that number is baaaad, I know from being a patient and a nurse!!!!(and another point, as a nurse I wouldn't sit there and think that about a patient, just me)). This continues until 6am, I feel slightly better and manage to get to sleep. 8.30am my alarm goes, I have to get up as I have a respiratory out patient appointment. Moving around immediately irritates the stupid lungs, peak flow is 180 (best is 640).

It literally takes me 2 1/2 hours to feed my cat, have a shower, get dressed, put on some make up so I don't look like the living dead, can't manage anything to eat so have to take steroids on an empty stomach.
Time to leave, I realise there is absolutely no way I can walk up to my car! Phone the respiratory nurses to tell them I'm going to be late, she tells me not to come in, to phone my GP and she'll phone me back later to check on me.
I decide against phoning my GP as when I'm sat still my sats rise to 95%, not great but acceptable. Unfortunately this is only temporary, they range from 88% to 93% with a pulse maxing 170!! So I put the salbutamol down, which clearly doesn't help when I get into these situations, use my Symbicort instead and knock back a few more steroids.
Finally I start to feel better, have a nap, the respiratory nurse phones, I reassure her that I'm much better than I was.

Right now, sats are 94%, pulse 125, peak flow 220. (damn, I thought I was feeling better than that :( )
I tell myself that if I go downhill later I will call an ambulance. But I know I won't, I just can't bring myself to call an ambulance unless I feel that it's a life threatening attack.
I need to get over this because the way things stand right now, if I die during an asthma attack it's goint to be because I don't ask for help in time, it'll be MY fault.

Ahh I feel better for getting that out, I don't have anyone to talk to about this stuff in real life.