Tuesday, 24 August 2010

The good and the bad

So the good; I got back in contact with a few friends last week, people I've unintentionally lost contact with over the past however many months. It was really lovely to have a catch up, I'm so bad at keeping in contact with people. I don't mean to fall out of touch with people, it just happens, and then before I know it it's been months since we last spoke! It was amazing to notice how much an hours conversation lifted my mood!! I need to make more of an effort to keep in contact with my friends that I don't see very often.
Another good; I've remained well enough to stay out of hospital another week. I feel like I'm only delaying the inevitable, but we'll see....

The bad... after a lot of thought, I've come to the conclusion that working makes my asthma deteriorate so much faster than when I'm not working :-( I know full well if I'd have been working right now then I'd have ended up in hospital. I don't get to sleep until after 2am, then routinely wake up during the night/early hours thanks to my stupid lungs. My best hours for sleep are roughly 8am til midday. If I was working then I'd have to be up for work before then, and multiple nights bad sleep combined with unhappy lungs often lands me in hospital - I think I get tired much more quickly, making me very poorly once my stupid lungs start to play up. This realisation makes me sad and quite worried, I hope the day doesn't come where I'm unable to work (let's ignore the fact that for the past 4 years I've been off sick more than I've actually worked!!).
Talking of work (yep work is bad for now), I should be back to work already. I was given the all clear to return to work at the end of July. A letter was sent to my manager, I was waiting for her to contact me. She hasn't and I don't think she is planning to! First of all I was patiently waiting, then impatiently waiting, then being stubborn so not contacting them, now I don't want to go back so I'm not contacting them! However, I know this can't last, so I'll have to give them a call sometime soon. Hmmm I could write quite a bit about the way I'm being treated by my manager and colleagues, but I don't want to ruin my mood so that can wait for another day.

I've got an outpatient appointment tomorrow, another assessment to see if I'm 'well enough' for the 2nd dose of Omalizumab. I don't feel any different to last week, my peak flow diary hasn't changed so I'm going to be interested to see what is said/suggested.

Wednesday, 18 August 2010

Christmassy thoughts

I had the joy of yet another out patient appointment this morning. The aim was to assess whether I am well enough for my second dose of Omalizumab, I knew I wasn't but went along anyway, hey it's not like I have much else to do!! 30 minute drive there, 10 minute appointment - my lung function is slightly up compared to last week but still not good enough to have the Omalizumab, and a 30 minute drive home.

I had a lovely idea for christmas cards today whilst driving home (which by the way is just over 4 months away!!). I like to make my own cards, but I've felt slightly upset lately when I've made cards for people and they don't comment on them or even say thank you; it makes me feel like I should just buy a standard card rather than put time and effort into making someone a card I think they'd like. So, I wasn't planning to make anymore cards, but I think what I'll do now is just pick a few people - family and close friends to make cards for. The rest can have standard (but nice) christmas cards out of a box.

My DVD player/recorder died on me yesterday which I'm really not happy about. I can't go without watching DVDs for long but I'm not sure I can afford a replacement. Well, I can afford a DVD player, but I want a recorder too, and now they're all HD with hard drives for recording onto so they're considerably more expensive then when I bought mine a few years ago! I'll have to wait until pay day and see what I can afford.

Friday, 13 August 2010

Stupid lungs 1 - Dawn 0

First, I feel bad for moaning about my respiratory team in my last post. They're great, I'm just pretty fed up with quite a few things right now.

I've just been reading something written by someone with asthma, talking about their asthma and the fact that they're using their blue inhaler (ventalin I assume) 4 or 5 times a day!! Wow, if I only used my inhalers that much then I'd be very happy indeed! I'm not trying to downplay that persons asthma, experiences, or distress and discomfort. I just feel... kinda jealous I suppose!
I don't know anyone in the 'real' world with brittle or severe asthma. I read and comment on a few peoples blogs who have it, but it's not the same. I don't really have anyone to talk to, some people will happily listen to me whine on but they don't understand. I'd like to have someone to talk to who can identify and understand how I feel :(

I was supposed to be meeting a friend for lunch today and I had to cancel. She was lovely about it, very understanding, but I feel awful. Partly because I've let her down, partly because I was looking forward to getting out and I was hoping to buy some new clothes, but mainly because I've let my stupid lungs stop me from doing something. I don't like to give in, I don't do it very often, and I don't do it quietly!
There was no way I was going to make it though. I was seriously struggling to breathe, sats rapidly varying between 82% and 89%, and that was all whilst sitting still. I know, I know, I should have called an ambulance. I'm clever like that *rolls eyes* I'm up to 93% now, not great but I don't plan on running any marathons, or moving very much at all for that matter so I'm sure I'll be fine for the rest of the day.

I think it's safe to conclude that a visit to hospital is in the pipe line for the not too distant future :(

Anyway, moving on :) I had a pretty rough day asthma wise yesterday, and I wanted to go out yesterday evening to watch the Perseid meteor shower. I was sensible and decided that even though the attack had calmed down, going out in the cold night air, whilst already a little wheezy and exhausted would not be a good idea. The perseids are north east and every window in my flat faces west haha! So from my bedroom window I was able to observe south west, west, and north west (ish lol). Typically, the 2 street lights that are in view of my window have been off for the past few weeks but they must have replaced the bulbs so I had halogen lights and the occasional car headlights to ignore to!! I wasn't holding out much hope of meteor spotting! BUT I spotted 4 :) :) They're amazing, I finally went to bed at 1am very happy.

Wednesday, 11 August 2010

Bring out the comfort food

Today should have been my second Omalizumab injection. After spirometry I was told I wasn't well enough to have it. I'm actually feeling really annoyed with the respiratory team :( Monday they made a big deal out of the fact I weaned myself off steroids when I ALWAYS wean myself off steroids. Then today it came up again, I pointed out that I've NEVER hidden the fact that I wean myself off steroids. In fact, I'm always so happy that I've managed to get off them that it's one of the first things I say in my respiratory appts! I do my own thing when it comes to steroids, I wean them down and I also know when to start taking them again, admittedly I generally delay restarting them but considering I don't want to take them at all, I don't think I do that bad a job of self managing it all. Secondly, they're saying I'm not well enough. This is actually not bad for me at all. I manage my lungs myself apart from when I have to be admitted. For them to tell me how 'well' I am or not, is really grating on me today.
Anyway, the plan is to have a follow up on Wednesday with the view of having the injection on Thursday.

Good news, I managed to fish the bra underwire out of the washing machine :) I did it a few hours after writing the last post, I couldn't leave it until the next day, once I get an idea like that in my head I like to get going!! It took a great deal of patience and a good hour, but I felt rather proud once I'd done it.

I've also managed to re-upholster a tattered old chair. My first attempt at re-upholstery and I'd declare it a success. I also felt quite proud of that little piece of work :)

I'm feeling pretty down after the whole respiratory thing earlier, or rather lack of! (well that and the lack of progress regarding my work situation, but that's another story and I've already moaned quite enough today). I'm going to indulge in my favourite ice cream now - Ben & Jerry's Cookie Dough, until I either feel better or reach the bottom of the tub!

Monday, 9 August 2010

A lesson learnt

Well, my lazy ways have caught up with me. To me, hand washing bra's is too much like hard work so I've always thrown them in the washing machine along with everything else. A few months back, I lost an underwire out of one of my bra's in the washing machine. It intermittently made a noise whilst in the spin cycle, but otherwise no problems so I left it. Tonight, the noise was horrendous so I'm going to have to do something about it, preferably something that doesn't cost any money! I tried to look through the holes in the drum but discovered that one of my torches is completely dead, and the other needs charging! I think I'll charge it overnight and continue the quest for the underwire tomorrow, and I plan to be much more careful (aka not so lazy) in the future!!

In other news, my stint off steroids lasted 2 weeks, which is actually quite good for me. I had to restart them last week. I had a review with my respiratory consultant today, he advised that I increase the pred back up to 40mg :( I'm supposed to have my second dose of Omalizumab on Wednesday, but if I don't pick up by then the injection will have to be delayed.

I'm feeling absolutely exhasuted. I'm not sure if I'm coming down with something or if all the disturbed nights sleep (thanks stupid lungs) have finally caught up with me.