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.
Monday, 31 May 2010
Sunday, 9 May 2010
*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.
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.
Wednesday, 5 May 2010
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!
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!
Tuesday, 4 May 2010
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 :-)
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 :-)
Sunday, 25 April 2010
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!
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!
Thursday, 8 April 2010
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!
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!
Wednesday, 24 March 2010
Slightly calmer
There have been no developments on the work situation. I have some people backing me, who want me to come back asap and agree with me that this is unfair so that makes me feel slightly better about it all. I'm still waiting to hear from Occupational Health. I haven't even received a letter, and this is supposed to be 'urgent'.
I've discovered who the 'traumatised' person is. She works in the next office to me, during my attack she stayed in her office, she didn't come out once, she only heard about it second hand from other people. Seriously, some people!
Anyway, not alot I can do about that. I was going to chase my manager to try to hurry along Occupational Health but I've decided not to. I didn't choose for this to happen, I've done nothing wrong, I'm going to take advantage of being paid to stay at home. So far I've done loads of sorting out and tidying! I've made some cards too, I haven't had the time to do that for a while. I do plan to get out and walk along the beautiful canal but the weather has been awful :( I've just checked and it's going to rain again tomorrow, miserable miserable weather!!!!!!
I've discovered who the 'traumatised' person is. She works in the next office to me, during my attack she stayed in her office, she didn't come out once, she only heard about it second hand from other people. Seriously, some people!
Anyway, not alot I can do about that. I was going to chase my manager to try to hurry along Occupational Health but I've decided not to. I didn't choose for this to happen, I've done nothing wrong, I'm going to take advantage of being paid to stay at home. So far I've done loads of sorting out and tidying! I've made some cards too, I haven't had the time to do that for a while. I do plan to get out and walk along the beautiful canal but the weather has been awful :( I've just checked and it's going to rain again tomorrow, miserable miserable weather!!!!!!
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