I finally managed to start Omalizumab last week!! 2 painful injections, but hey, nothing compared to ABG's (I kept reminding myself!). I had no dramatic side effects so was able to go home 5 hours later. I did have a headache, but was suffering with headaches a lot that week. Since I've had a very sore throat, and yesterday knee and back pain started. Random I know. I was warned that knee pain in common... I don't know if any of the post injection 'side effects' are actually side effects though, I'll wait until I've had a few more injections and see if they continue to occur...
Today is my first day off steroids :-) My peak flows aren't doing TOO badly. I know from past experiences that this is unlikely to last long, the longest I usually manage off steroids is about a week, but it's important for me to keep trying to manage without them.
Just read this "Asthma stat of the week: On average, three people per day or one person every seven hours dies from asthma." Scary :-(
Tuesday, 20 July 2010
Sunday, 11 July 2010
Struggling....
Life feels hard right now.
My mood is in a downward spiral. I'm trying to stop it, I really am.
I had a full on bulimia relapse the week before last. 'Blips' are normal, recovery is a long process and I can accept blips. But I can't call a week long episode a blip, I can't kid myself that it was something that innocent, it was a relapse, and that makes me sad.
I broke the cycle though before it took complete control. That's something at least.
I feel so alone. I have no one to talk to about how I feel. I promised myself that I wouldn't allow myself to get into this position again, where I felt alone with these feelings, but here I am, with no one to turn to.
I've got friends that in theory I could talk to, I have my GP, I'm still technically under the mental health services (for severe depression) so I could contact someone, but I don't feel able to talk to anyone.
I had a meeting in the week with my respiratory nurse and occupational health, where a plan was devised which will (hopefully!) enable me to return to work. It felt like an exercise in making me feel stupid.
After the meeting I stayed to chat to my nurse, she is lovely and I spoke about some of the above stuff, but.... well she has better things to do than listen to me whine. Don't get me wrong, she listened and was supportive, but I took up enough of her time as it was.
*sigh*
Anyway, it will pass. I'm sure it will. I'm struggling with being off work for so long, I don't do well when I don't have routine or structure to my life.
ok, enough with the negativity, positives.......
My lungs are being relatively well behaved. I'm reducing my steroids down nicely, using my salbutamol inhaler less than 20 puffs (complete guestimate lol) a day which is good for me!
All being well, I should be starting Omalizumab this week!! I'm being admitted to respiratory ward for the day which isn't normal procedure. My consultant thinks it's for the best as it's my first dose and considering my tendancy to get very poorly very quickly. I don't mind; I'll take a book, a sandwich and diet coke and hopefully be able to sit quietly for the day :)
The plan to enable me to get back to work has been devised. It now needs to be agreed by a few people, but unfortunately this time of year people are on holiday. I think it's realistic to say that I should be back to work sometime in August :)
(See Dawn, stop being so miserable, things aren't as bad as they seem.)
My mood is in a downward spiral. I'm trying to stop it, I really am.
I had a full on bulimia relapse the week before last. 'Blips' are normal, recovery is a long process and I can accept blips. But I can't call a week long episode a blip, I can't kid myself that it was something that innocent, it was a relapse, and that makes me sad.
I broke the cycle though before it took complete control. That's something at least.
I feel so alone. I have no one to talk to about how I feel. I promised myself that I wouldn't allow myself to get into this position again, where I felt alone with these feelings, but here I am, with no one to turn to.
I've got friends that in theory I could talk to, I have my GP, I'm still technically under the mental health services (for severe depression) so I could contact someone, but I don't feel able to talk to anyone.
I had a meeting in the week with my respiratory nurse and occupational health, where a plan was devised which will (hopefully!) enable me to return to work. It felt like an exercise in making me feel stupid.
After the meeting I stayed to chat to my nurse, she is lovely and I spoke about some of the above stuff, but.... well she has better things to do than listen to me whine. Don't get me wrong, she listened and was supportive, but I took up enough of her time as it was.
*sigh*
Anyway, it will pass. I'm sure it will. I'm struggling with being off work for so long, I don't do well when I don't have routine or structure to my life.
ok, enough with the negativity, positives.......
My lungs are being relatively well behaved. I'm reducing my steroids down nicely, using my salbutamol inhaler less than 20 puffs (complete guestimate lol) a day which is good for me!
All being well, I should be starting Omalizumab this week!! I'm being admitted to respiratory ward for the day which isn't normal procedure. My consultant thinks it's for the best as it's my first dose and considering my tendancy to get very poorly very quickly. I don't mind; I'll take a book, a sandwich and diet coke and hopefully be able to sit quietly for the day :)
The plan to enable me to get back to work has been devised. It now needs to be agreed by a few people, but unfortunately this time of year people are on holiday. I think it's realistic to say that I should be back to work sometime in August :)
(See Dawn, stop being so miserable, things aren't as bad as they seem.)
Friday, 2 July 2010
Maybe, just maybe....
The decision to increase Prednisolone was the right decision, I'm weaning down, currently on 30mg. Still too high for my liking but I can breathe, sleep, leave my flat.... it's all good!! This time round though I seem to be getting more side effects than I'm used to. The blurred vision is standard for me, as is the increased appetite, but this time I also have awful insomnia and water retention. I hate hate hate steroids, and hate even more that I have to take them as they're the only thing that bloody works :-(
Because of the steroids I've been able to get out and about and do things! Yay!
I visited Bath thermae spa this week. I was very dubious about it, I can't swim and have water 'issues' but it was so lovely and relaxing. It's also inspired me to learn to swim. Being in the water wasn't as terrifying as I thought it would be, and I would have been so much more confident/happier if I'd been able to swim! I've looked into adult swimming lessons, now I just have to book myself onto them.... Maybe once I've done the lessons I can go back to the spa and treat myself to a treatment (I like the idea of hot stone massage therapy) as a reward :-)
Also, I've been able to walk around shops without the usual breathlessness and wheezing which funnily enough, makes me not want to go shopping! Hence, I have some nice new summer clothes :-)
Today I went to Clarks Village, which is a discount/outlet little shopping centre. I treated myself :-D I was actually very restrained, I could have spent double what I did!!
Other good news, I had a phone call today about a meeting which will get me closer to going back to work! That's next week, so, with any luck, I could be back at work within the next few weeks! I shouldn't get my hopes up though based on past experiences.
I need to go back to work; I seem to be spending far too much money, and being at home on my own is not good for me.
Oh, and finally I have another appointment through to attempt starting Xolair again.
Maybe, just maybe, things are on the up....
Because of the steroids I've been able to get out and about and do things! Yay!
I visited Bath thermae spa this week. I was very dubious about it, I can't swim and have water 'issues' but it was so lovely and relaxing. It's also inspired me to learn to swim. Being in the water wasn't as terrifying as I thought it would be, and I would have been so much more confident/happier if I'd been able to swim! I've looked into adult swimming lessons, now I just have to book myself onto them.... Maybe once I've done the lessons I can go back to the spa and treat myself to a treatment (I like the idea of hot stone massage therapy) as a reward :-)
Also, I've been able to walk around shops without the usual breathlessness and wheezing which funnily enough, makes me not want to go shopping! Hence, I have some nice new summer clothes :-)
Today I went to Clarks Village, which is a discount/outlet little shopping centre. I treated myself :-D I was actually very restrained, I could have spent double what I did!!
Other good news, I had a phone call today about a meeting which will get me closer to going back to work! That's next week, so, with any luck, I could be back at work within the next few weeks! I shouldn't get my hopes up though based on past experiences.
I need to go back to work; I seem to be spending far too much money, and being at home on my own is not good for me.
Oh, and finally I have another appointment through to attempt starting Xolair again.
Maybe, just maybe, things are on the up....
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.....
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.
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.
Monday, 31 May 2010
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.
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.
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.
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