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.

Just checking in

Evidently I'm not too good at this blogging lark. My life is very boring lately, and even I get fed up of listening to me whine on about the same old boring stuff!!

Lungs are STILL being very annoying. In a bid to keep myself out of hospital I increased my steroids to 60mg, I couldn't sustain that dose for long though as it makes my vision blurry, not great when I have to drive! I've got back down to 20mg and I don't think I can risk dropping any further for now. I shall refrain from ranting on about weight and steroids :(

STILL not back at work, don't really know what is happening there, can't say I really care! It's slowly getting sorted, (slowly being the key word), I don't like where I'm stuck working for now, I don't particularly want to go back, so I'm not trying to hurry this whole process along!

I've been getting quite a few free cinema tickets lately which is great! I've seen Bad Lieutenant, Death at a Funeral, tomorrow I'm going to see She's Out of My League, and next week I have free tickets to see Letters to Juliet. Freebies are always good, and it means I have an excuse to get out of the house.

*yawn*

I should be in hospital, but I don't want to be, so I'm not.
I know, I know, really clever Dawn *roll eyes* I should know better, blah blah. I don't think I'll be able to avoid being admitted for much longer anyway :(

To follow on from my last post, Wednesday spent a few hours in hospital under observation, Thursday was fine (thanks to the stupid amount of drugs I took on Wednesday to get out of hospital), Friday I was ok until the evening when I started wheezing and feeling breathless. Yesterday I was ok until about 7pm, drove home from where I was (over an hours drive) feeling worse and worse. Thought 'I refuse to give into these stupid lungs' so sat here with my inhalers and pulse oximeter - althought that is completely useless as I ignore it until the numbers get scarily low!
1am I wasn't feeling any better but not bad enough to call an ambulance (note; not bad enough to call an ambulance for me, if it had of been anyone else they would have had an ambulance called for them hours previously, I know another demonstration of my own stupidity). Anyway, 1am I decide to go up to bed, gather all the pillows so I can sit upright in bed. Doze, can't breathe, wake up, doze.... and repeat until 8am when I finally managed to get some sleep.

I am feeling slightly better now, but I've had to cancel my plans for today :( I'm fine as long as I don't try to move too much.... I'm going to attempt a shower a bit later on so that could be fun.

I'm so fed up. I could take a huge amount of steroids, but I don't want to AND as demonstrated already this week, all that will do is delay the inevitable admission to hospital. So todays plan; sats of 90% = hospital. Right now my pulse is still high but considering how much salbutamol I've had that's not surprising, and my sats are hoovering around 94%.

I don't understand why I have such a problem getting myself to hospital, if I'd been well enough to walk to my car last night I would have driven to the local Minor Injuries Unit where they would have nebulised me and called an ambulance. I KNOW they would have called an ambulance to take me to A&E 30 minutes drive away. So why can't I just call the ambulance myself?!?! If I'd been with someone else who was in my position last night I would have called an ambulance regardless of whether they wanted me to or not. I suppose I'll just wait and see as the day/night progresses.

Fail

I'm so fed up. Complete failure of a day :(
I went to the hospital not feeling great (breathless and wheezy) but hoping that I would be okay to have my first injection of Xolair. Unfortunately I had a resting pulse rate of 140 and O2 sats of 90% on air. (unsurprisingly) my consultant said that I couldn't have the drug, and he wanted me to be admitted. I argued, and was eventually admitted for observation to the Emergency Medical Ward. Whilst there I took some extra steroids and used my inhalers slightly more than I probably should, my sats came up, my pulse came down a little and after 4 hours I was discharged, after being made to promise I would call an ambulance at the slightest change for the worse.
I was discharged too late to go to the cinema and meet my friend for dinner.
I then got stuck in roadwork traffic so it took me just over an hour to get home.
THEN I got home to find my cat had been sick in various areas of my flat.

It was at this point that I cried :(

It's days like this which really get to me, my horrible, stupid, useless lungs cause me so many problems. I thought (hoped) Xoliar may be able to help improve my quality of life, but now I have no idea when I'll be able to start it.

Trying to be positive; at least I was discharged :) I know I don't need to stay in hospital, I'm not at that stage (yet) so I probably would have discharged myself, which I'd rather not do as it looks SO bad in your medical notes!

New drugs for meeeeeeee

Tomorrow I am finally starting Xolair (Omalizumab). I've been promised this drug for almost 4 years now, so to be finally getting it... well hopefully it'll be good :-D
I'm not convinced that it's going to make a huge difference as my IgE levels are never sky high, but it's definitely worth a go.

Ummm other news, still not back working (the less said there the better), I'm having 'issues' surrounding friends, my lungs are being completely stupid.... all in all I'm trying to not let things get me down too much right now!

To focus on the positives; new drug tomorrow, then meeting up with a friend for dinner and going to the cinema. Oh and I get to try the new crepe place that's just opened up before I go to my hospital appointment :-)

Living the boring life

Hmmmm well, so I don't have very much to write....

I got awarded DLA (mobility component), I'm not too sure how I feel about that!! I was encouraged to apply for it by the Respiratory Nurse Specialist, I didn't think I'd get it but I thought that I had nothing to lose by applying for it. I don't really want to think of myself as disabled, but this does make me feel like less of a fraud when I struggle to even move from a chair when struggling to breathe :(

My peak flows are dropping. I'm desperately trying to avoid restarting the pred. Unfortunately, today and yesterday I feel really flu-y, I hope it doesn't develop into anything because that won't be good for my intentions of keeping away from the lovely respiratory ward.

I'm still not back at work, but hey ho, there is absolutely nothing I can do about it. Reports have been requested; it's just a case of my consultant confirming that I can go back to work, and off I go. I'm kind of past caring about it all now!

Wow, I'm pretty boring!

The sun is out!

I felt I should come and write something, it's a little early to neglect my blog considering it's only a few months old!

For the first time in a long time I have pretty good control of my asthma. I don't wake up every night struggling to breathe, I can walk around town without having to stop to breathe or have an inhaler break, I don't need to keep my salbutamol inhaler beside me everywhere I go (obviously it's close by, I just don't need to have it right beside me).... So, in light of this I am weaning down my steroids, yay!! I absolutely hate taking them and being this well is the perfect time to come off them :)
I have a hospital appointment next week, I hope this continues as it would be lovely to be able to go in being well for a change, and to give a really good go on the old Spirometry machine!

I'm still not back at work :( So much for them promising to make this urgent and rush through the referral. I have received my occupational health appointment though; next Thursday. I'm absolutely dreading it, the occupational health doctor and I have previous.... issues......
I'm nowhere near as upset about not working anymore. I've been taking the opportunity to meet up with people, spend lots of money (lol), read. The main downside is that I eat more when I have no structure in my day, but I'm working on that.

Finally the sun is out!! Unfortunately, I'm not really able to do much to enjoy it! I decided that as my lungs are cooperating, and I don't have much else to do I'd start exercising. I threw myself into it, I went from doing absolutely nothing to doing an hour every day, until my ankles complained. I think I have achilles tendonitis. Not good, it really hurts and isn't getting any better! Walking around makes it worse so yesterday and today I'm not moving very much at all. The swelling has definitely gone down, and the pain isn't as bad, so hopefully I'm doing the right thing and soon I'll be able to move around pain free!
It's so annoying, I get my stupid lungs to behave and then something else crops up!