So it would appear that I'm actually rubbish at blogging. Two months without an update! I read other peoples blogs, I just don't have any exciting news to update my own blog with.
Lately, life in general seems to be a bit of a struggle. I feel ill all the time. I've begun doubting my ability to do anything at all. Everyone else is telling me that I can't work full time with a serious respiratory condition. I can't afford to drop my hours, and I won't qualify for further benefits (so far I only get DLA) unless I dramatically drop my hours or quit work altogether. Then there is the issue that I can work for over 50% of the time, and I want to work.
I saw Occupational Health today, they're recommending redeployment on medical grounds. I've given this so much thought, I really don't know what to do for the best. Initially I agreed that maybe working in a less physically demanding environment would be better for me, now I just don't know. Clearly I can't continue in the way I am but I feel so pathetic. All I seem to do is whine about feeling ill. Mentally and physically, I feel ill and so tired.
Thursday, 24 January 2013
Friday, 23 November 2012
Hello again!
I didn't realise that it had been a month since my last post - bad Dawn!
I'm plodding on through life, which is both good and bad. Work is still an issue, I'm not entirely sure where I stand and what is going on; I'm in a horrible position where I'm being told one thing by one person and then being told half of something else by someone else which doesn't match what I was told initially. I just wish people would be honest rather than think they're being nice and trying to spare my feelings, which in the long run ends up in making a situation even worse!!
I had an appointment at the Severe and Brittle Asthma Unit at Heartlands last week. I must admit, I wasn't feeling too hopeful before I went. Clinic was running 1.5 hrs behind when I got there so people were moaning, but then respiratory physiologist told me that Dr Mansur was running the clinic on his own which is why it was running so behind. Well, this made waiting over an hour worthwhile! I've wanted to see Dr Mansur from the beginning but every other time have ended up seeing one of his registrars, which is fine but they don't make any big decisions without discussing things through with Dr Mansur first, so I'd rather just see him in the first place!
First we discussed Bronchial Thermoplasty. I'd previously been told that I'd been ruled out for this treatment as I've had too many chest infections over the past year. Dr Mansur said he didn't want to rule it out straight away, but would look at my CT scans to see the extent of my Bronchiectasis. Apparently Bronchiectasis is a contraindication for Bronchial Thermoplasty, but they might go ahead if the Bronchiectasis is very mild. I have very mixed thoughts about this procedure, but I'll save that for another blog.
Then we discussed the subcutaneous Terbutaline infusion. This has been mentioned before, but Dr Mansur said that he now thought that should be our next step. I'd need to be admitted to hospital for 10-14 days, and have a trial of Terbutaline to see if it actually helps. Unfortunately, winter is not the best time to try to get an elective bed on a respiratory ward so Dr Mansur thinks it would probably be around March time. My local consultant had previously mentioned running the trial at my local hospital, so I mentioned this as it would obviously be much more convenient. The respiratory nurse specialist at Heartlands is going to liaise with my local respiratory team, and discuss where would be best placed to run the trial.
When the subcut infusion was first discussed, I was really optimistic that it would work. Since then I have tried Bambuterol tablets (which is a prodrug of Terbutaline) and unfortunately I simply couldn't tolerate them. I was shaky, couldn't sleep, and I had a constant severe headache which didn't respond to any medication and was severe enough to stop me from doing day to day life. So whilst I still want to give the Terbutaline a go, I'm not falling into the trap of thinking that this is my wonder drug, and is going to transform my life.
I'm plodding on through life, which is both good and bad. Work is still an issue, I'm not entirely sure where I stand and what is going on; I'm in a horrible position where I'm being told one thing by one person and then being told half of something else by someone else which doesn't match what I was told initially. I just wish people would be honest rather than think they're being nice and trying to spare my feelings, which in the long run ends up in making a situation even worse!!
I had an appointment at the Severe and Brittle Asthma Unit at Heartlands last week. I must admit, I wasn't feeling too hopeful before I went. Clinic was running 1.5 hrs behind when I got there so people were moaning, but then respiratory physiologist told me that Dr Mansur was running the clinic on his own which is why it was running so behind. Well, this made waiting over an hour worthwhile! I've wanted to see Dr Mansur from the beginning but every other time have ended up seeing one of his registrars, which is fine but they don't make any big decisions without discussing things through with Dr Mansur first, so I'd rather just see him in the first place!
First we discussed Bronchial Thermoplasty. I'd previously been told that I'd been ruled out for this treatment as I've had too many chest infections over the past year. Dr Mansur said he didn't want to rule it out straight away, but would look at my CT scans to see the extent of my Bronchiectasis. Apparently Bronchiectasis is a contraindication for Bronchial Thermoplasty, but they might go ahead if the Bronchiectasis is very mild. I have very mixed thoughts about this procedure, but I'll save that for another blog.
Then we discussed the subcutaneous Terbutaline infusion. This has been mentioned before, but Dr Mansur said that he now thought that should be our next step. I'd need to be admitted to hospital for 10-14 days, and have a trial of Terbutaline to see if it actually helps. Unfortunately, winter is not the best time to try to get an elective bed on a respiratory ward so Dr Mansur thinks it would probably be around March time. My local consultant had previously mentioned running the trial at my local hospital, so I mentioned this as it would obviously be much more convenient. The respiratory nurse specialist at Heartlands is going to liaise with my local respiratory team, and discuss where would be best placed to run the trial.
When the subcut infusion was first discussed, I was really optimistic that it would work. Since then I have tried Bambuterol tablets (which is a prodrug of Terbutaline) and unfortunately I simply couldn't tolerate them. I was shaky, couldn't sleep, and I had a constant severe headache which didn't respond to any medication and was severe enough to stop me from doing day to day life. So whilst I still want to give the Terbutaline a go, I'm not falling into the trap of thinking that this is my wonder drug, and is going to transform my life.
Sunday, 21 October 2012
Can I call someone for you?
I doubt it will come as a surprise to read that I've been in hospital. I did manage almost 7 months without an admission, which is good going for me! It was the usual story of struggling for hours before going in, I promised myself that I wouldn't let it get too bad before seeking help, unfortunately I don't seem to get that 'in between stage'. I go from being at a level where I can manage and don't feel the need to be in hospital, straight to being in a life threatening attack. I used my Epi Pens for the first time, I used both in the time it took for the ambulance to arrive, I'm not sure whether they helped but they certainly didn't make things any worse!
I was in hospital for 8 days, this time my lungs just wouldn't settle down and they're still very twitchy now which isn't great! During one severe attack, the ICU registrar and consultant reviewed me, they decided I had a Pulmonary Embolism (PE), arranged for an emergency CTPA at 2am..... and it was negative. I could have told them that! It's not the first time a PE has been queried as my asthma doesn't always follow the typical pattern. I narrowly managed to avoid being admitted to ICU twice on this admission :(
Anyway, at numerous times during this admission when I was poorly and really struggling to breathe, the nurses looking after me at those points kept offering to call someone for me. Was there anyone I wanted to be called to come in and sit with me? For them to be aware that I was poorly again? Someone just to be there for me? I kept saying no. I think the nurses thought I didn't want to be a nuisance to anyone, the truth is, there wasn't anyone. I don't have anyone to call. It's not as if this is a new situation, but I guess it hit home a little harder this time.
My family, well the nurses could call my family but they wouldn't do anything, they wouldn't appreciate the late night/early morning phone call though!
Friends, (and I'm talking about friends who live in this area so are able to come to the hospital), they don't even come and see me during regular visiting hours, so I don't think I can rely on them to come when I'm poorly, just to be there and support me.
Usually, the respiratory specialist nurses come and see me daily when I'm admitted. I'm pretty sure the senior respiratory nurse specialist was away last week as I didn't see her around on the ward. I saw other specialist nurses visiting other patients on the ward, but they either didn't realise I was in or were too busy to say hello.
As much as I used to complain about the people I used to work with, they'd always come and visit me. The people I work with now only contact me outside of work if they want to get a lift from me.
I know I'm whining. Usually when I've been in hospital I feel sorry for myself because I've been very poorly. This time, it's because I feel so alone.
I was in hospital for 8 days, this time my lungs just wouldn't settle down and they're still very twitchy now which isn't great! During one severe attack, the ICU registrar and consultant reviewed me, they decided I had a Pulmonary Embolism (PE), arranged for an emergency CTPA at 2am..... and it was negative. I could have told them that! It's not the first time a PE has been queried as my asthma doesn't always follow the typical pattern. I narrowly managed to avoid being admitted to ICU twice on this admission :(
Anyway, at numerous times during this admission when I was poorly and really struggling to breathe, the nurses looking after me at those points kept offering to call someone for me. Was there anyone I wanted to be called to come in and sit with me? For them to be aware that I was poorly again? Someone just to be there for me? I kept saying no. I think the nurses thought I didn't want to be a nuisance to anyone, the truth is, there wasn't anyone. I don't have anyone to call. It's not as if this is a new situation, but I guess it hit home a little harder this time.
My family, well the nurses could call my family but they wouldn't do anything, they wouldn't appreciate the late night/early morning phone call though!
Friends, (and I'm talking about friends who live in this area so are able to come to the hospital), they don't even come and see me during regular visiting hours, so I don't think I can rely on them to come when I'm poorly, just to be there and support me.
Usually, the respiratory specialist nurses come and see me daily when I'm admitted. I'm pretty sure the senior respiratory nurse specialist was away last week as I didn't see her around on the ward. I saw other specialist nurses visiting other patients on the ward, but they either didn't realise I was in or were too busy to say hello.
As much as I used to complain about the people I used to work with, they'd always come and visit me. The people I work with now only contact me outside of work if they want to get a lift from me.
I know I'm whining. Usually when I've been in hospital I feel sorry for myself because I've been very poorly. This time, it's because I feel so alone.
Saturday, 6 October 2012
Long time, no update.....
Hello! I've been thinking about writing something for a while but things haven't been going so well lately, I don't want to moan and whine and moan and whine - even I get fed up of myself!
I'm settled into my new home. It's great, I love living here! :) I've got a few more pieces of furniture to buy, but they're just little non essential storage pieces so I'm waiting until I find things that I really like rather than making do. It has been ever such hard work all this furniture shopping ;) ha!
So, a common theme for me to ramble on about; lungs and work.
First the good, I've finished my Return to Practice course. I'm now waiting for the results of my work, I know my assignment is fine but I have no idea whether my clinical practice portfolio is the same standard - I absolutely hate writing reflective accounts! Hopefully I should get my PIN number back soon and I can be a 'real' nurse again.
My stupid lungs are creating havoc. If I didn't have my own nebuliser, I'd have had to give in and go to hospital by now. Initially I thought I had a chest infection brewing as I had my usual warning signs; headache that doesn't respond to any medication and a temperature. But my lungs have continued to get worse and the more typical signs of infection haven't appeared, so I don't think I do have an infection after all. I have no idea what is going on, and upping my medication and getting lots of rest isn't helping. Not good :(
Work isn't going too well. I've had to phone in sick a few times, which I absolutely hate doing. But, on the days I haven't phoned in sick and forced myself in despite not feeling great, I end up having to use my nebuliser multiple times during the day, and come the end of the day I have an awful headache bordering on a migraine, and my lungs are so unhappy that they then play up all night and into the next day :(
The comments from my colleagues and matron have started; how impractical it is for a nurse to leave the ward to use a nebuliser (even though 9 times out of 10 I do it during my breaks!!) and such like. Sympathy seems to be waning - not that I want their sympathy, but people seemed to understand that I was trying to continue working but struggling, whereas now I feel they look at me like I'm a nuisance. I appreciate that I might be making this into a bigger deal than it actually is as I'm feeling so down right now.
There was a management meeting about me last week, I only became aware when I was told it had been rearranged, the sister thought I had known about. I asked if I could attend to be told no. Outcome of it (as I was told) is that I'm being referred to Occupational Health (who I have to see every 3 months anyway) as there are 'concerns' about my fitness to work. Here we go again. This is what happened before. Seriously, who would have thought it would be so difficult to continue working?!?!
I'm settled into my new home. It's great, I love living here! :) I've got a few more pieces of furniture to buy, but they're just little non essential storage pieces so I'm waiting until I find things that I really like rather than making do. It has been ever such hard work all this furniture shopping ;) ha!
So, a common theme for me to ramble on about; lungs and work.
First the good, I've finished my Return to Practice course. I'm now waiting for the results of my work, I know my assignment is fine but I have no idea whether my clinical practice portfolio is the same standard - I absolutely hate writing reflective accounts! Hopefully I should get my PIN number back soon and I can be a 'real' nurse again.
My stupid lungs are creating havoc. If I didn't have my own nebuliser, I'd have had to give in and go to hospital by now. Initially I thought I had a chest infection brewing as I had my usual warning signs; headache that doesn't respond to any medication and a temperature. But my lungs have continued to get worse and the more typical signs of infection haven't appeared, so I don't think I do have an infection after all. I have no idea what is going on, and upping my medication and getting lots of rest isn't helping. Not good :(
Work isn't going too well. I've had to phone in sick a few times, which I absolutely hate doing. But, on the days I haven't phoned in sick and forced myself in despite not feeling great, I end up having to use my nebuliser multiple times during the day, and come the end of the day I have an awful headache bordering on a migraine, and my lungs are so unhappy that they then play up all night and into the next day :(
The comments from my colleagues and matron have started; how impractical it is for a nurse to leave the ward to use a nebuliser (even though 9 times out of 10 I do it during my breaks!!) and such like. Sympathy seems to be waning - not that I want their sympathy, but people seemed to understand that I was trying to continue working but struggling, whereas now I feel they look at me like I'm a nuisance. I appreciate that I might be making this into a bigger deal than it actually is as I'm feeling so down right now.
There was a management meeting about me last week, I only became aware when I was told it had been rearranged, the sister thought I had known about. I asked if I could attend to be told no. Outcome of it (as I was told) is that I'm being referred to Occupational Health (who I have to see every 3 months anyway) as there are 'concerns' about my fitness to work. Here we go again. This is what happened before. Seriously, who would have thought it would be so difficult to continue working?!?!
Tuesday, 7 August 2012
Update time
I'm a bad blogger leaving it so long before updating! So, what have a got to share that is worth writing about.....
I had another appointment at the SBAU in Heartlands. Whilst there I was able to meet the lovely Emma which was great! I'm sure she was glad when I left though as I have a tendency to get excited and talk non stop!
I had to have my lung function tests redone as they weren't done properly on my previous visit. My lung function tests showed a 30% increase after a neb, no surprise there but it's always good to get these things confirmed properly. I also had my exhaled nitric oxide levels measured for the first time which was rather exciting! We don't have such exotic machines in my local hospital.
The appointment was with a registrar and I left feeling that it was a complete waste of time :(
Since then I've had yet another chest infection, it seems to have completely knocked my lungs from that little stable period back into uncontrolled and unpredictable :( Things aren't too bad yet, but I am concerned about not being able to get on top of this.
I'm moving house this week! It's very exciting but probably isn't helping the stupid lung situation. I don't feel stressed (well, I am starting to feel a little stressed today as I still have so much left to pack) but I think moving everything around and dust is upsetting my lungs a little.
I received the clinic letter from my appointment at the SBAU. It was far more helpful than I left the appointment feeling. The letter recommended that I have a home nebuliser. Finally!! I have been fighting and begging for a home nebuliser for years. My local consultant is very against asthmatics having home nebulisers, which I've found incredibly frustrating. Every time I brought it up, his answer was that 'if I needed a neb, I needed to be in hospital'. Last time I saw him, he said if Heartlands agreed to me having a home neb, he'd be happy with it. So yesterday I went to my local hospital and got myself a little nebuliser - yay!! Seriously, it's amazing how happy this little bit of medical equipment has made me! I'm not under any illusions that it's going to cure me or anything, but I think it's going to massively help in the middle of the night when I wake up struggling to breath, and in the morning when it takes me ages to do anything because I'm so breathless and wheezy.
Heartlands have been keen to push Bronchial Thermoplasty with me. I haven't been too keen on the idea as I feel there are other options we could try before going for such a drastic treatment. I thought we left it as something we could look at in the future. However, today I had a phone call from one of the respiratory nurses to screen me for BT. I was a little surprised but went along with it. It turns out that I'm not eligible because I've had more than 3 chest infections in the past 12 months. Even though I wasn't overly keen on having the procedure, I feel a little upset that this treatment isn't available to me. Meh I'll get over it, I guess I just don't like being told I can't have something!!
Next time you hear from me, I should be in my new home :)
I had another appointment at the SBAU in Heartlands. Whilst there I was able to meet the lovely Emma which was great! I'm sure she was glad when I left though as I have a tendency to get excited and talk non stop!
I had to have my lung function tests redone as they weren't done properly on my previous visit. My lung function tests showed a 30% increase after a neb, no surprise there but it's always good to get these things confirmed properly. I also had my exhaled nitric oxide levels measured for the first time which was rather exciting! We don't have such exotic machines in my local hospital.
The appointment was with a registrar and I left feeling that it was a complete waste of time :(
Since then I've had yet another chest infection, it seems to have completely knocked my lungs from that little stable period back into uncontrolled and unpredictable :( Things aren't too bad yet, but I am concerned about not being able to get on top of this.
I'm moving house this week! It's very exciting but probably isn't helping the stupid lung situation. I don't feel stressed (well, I am starting to feel a little stressed today as I still have so much left to pack) but I think moving everything around and dust is upsetting my lungs a little.
I received the clinic letter from my appointment at the SBAU. It was far more helpful than I left the appointment feeling. The letter recommended that I have a home nebuliser. Finally!! I have been fighting and begging for a home nebuliser for years. My local consultant is very against asthmatics having home nebulisers, which I've found incredibly frustrating. Every time I brought it up, his answer was that 'if I needed a neb, I needed to be in hospital'. Last time I saw him, he said if Heartlands agreed to me having a home neb, he'd be happy with it. So yesterday I went to my local hospital and got myself a little nebuliser - yay!! Seriously, it's amazing how happy this little bit of medical equipment has made me! I'm not under any illusions that it's going to cure me or anything, but I think it's going to massively help in the middle of the night when I wake up struggling to breath, and in the morning when it takes me ages to do anything because I'm so breathless and wheezy.
Heartlands have been keen to push Bronchial Thermoplasty with me. I haven't been too keen on the idea as I feel there are other options we could try before going for such a drastic treatment. I thought we left it as something we could look at in the future. However, today I had a phone call from one of the respiratory nurses to screen me for BT. I was a little surprised but went along with it. It turns out that I'm not eligible because I've had more than 3 chest infections in the past 12 months. Even though I wasn't overly keen on having the procedure, I feel a little upset that this treatment isn't available to me. Meh I'll get over it, I guess I just don't like being told I can't have something!!
Next time you hear from me, I should be in my new home :)
Wednesday, 6 June 2012
Let's go fly a kite
The title has absolutely nothing to do with this post, the song has been in my head for hours.
I can't sleep hence the 2.30am blog post. I really need to get into some sort of sleep routine, I just find it so hard to get out of my lovely bed each morning!! I like to stay up late and sleep in, unfortunately on work days I need to get up at 5.30am, meaning I don't get much sleep the night before I work as I'm not tired enough to go to bed at a decent time because I've slept in too late that morning! I try to set my alarm, but if I don't actually 'have' to get up for something, I have a habit of switching off my alarm and going back to sleep. I need discipline!! Actually, now come to think of it, I'm lacking discipline in a few areas of my life..... maybe that is something I should work on!!
I'm very pleased to say that my lungs are happier than my last post. I've finished my course of antibiotics which have definitely helped. I didn't need to even think about taking myself to hospital for treatment, and I only needed to take one day off work sick - and that was purely because I was stubborn and decided to work a 12.5 hour shift after only two days of antibiotics and very little sleep. I was told I could work a half day if I wanted, but I insisted I'd be fine, then the next day I could barely get out of bed without coughing and gasping for breath. But, a day of sleep and taking it easy meant I felt much better :) Not that I can take all the credit, I think this chest infection was only a mild one, or maybe I caught it and got antibiotics earlier than I normally do. I certainly haven't felt as poorly as I normally do when I have a chest infection.
I think I'm finally growing up or something, there was a time when I would have forced myself into work regardless of how I felt, whereas now I can see that taking a day off when I feel ill means I can rest, and most likely (hopefully!) stop myself from getting any worse meaning I end up taking a week off work, or even worse, end up in hospital!! Granted, it would have been better if I'd only worked a half shift then maybe I wouldn't have needed to phone in sick the next day, but hey, one step at a time!!
I think the slightly down feeling I had last week was caused by me feeling generally unwell, as I'm feeling much more positive again this week.
On the whole, life is good :)
I can't sleep hence the 2.30am blog post. I really need to get into some sort of sleep routine, I just find it so hard to get out of my lovely bed each morning!! I like to stay up late and sleep in, unfortunately on work days I need to get up at 5.30am, meaning I don't get much sleep the night before I work as I'm not tired enough to go to bed at a decent time because I've slept in too late that morning! I try to set my alarm, but if I don't actually 'have' to get up for something, I have a habit of switching off my alarm and going back to sleep. I need discipline!! Actually, now come to think of it, I'm lacking discipline in a few areas of my life..... maybe that is something I should work on!!
I'm very pleased to say that my lungs are happier than my last post. I've finished my course of antibiotics which have definitely helped. I didn't need to even think about taking myself to hospital for treatment, and I only needed to take one day off work sick - and that was purely because I was stubborn and decided to work a 12.5 hour shift after only two days of antibiotics and very little sleep. I was told I could work a half day if I wanted, but I insisted I'd be fine, then the next day I could barely get out of bed without coughing and gasping for breath. But, a day of sleep and taking it easy meant I felt much better :) Not that I can take all the credit, I think this chest infection was only a mild one, or maybe I caught it and got antibiotics earlier than I normally do. I certainly haven't felt as poorly as I normally do when I have a chest infection.
I think I'm finally growing up or something, there was a time when I would have forced myself into work regardless of how I felt, whereas now I can see that taking a day off when I feel ill means I can rest, and most likely (hopefully!) stop myself from getting any worse meaning I end up taking a week off work, or even worse, end up in hospital!! Granted, it would have been better if I'd only worked a half shift then maybe I wouldn't have needed to phone in sick the next day, but hey, one step at a time!!
I think the slightly down feeling I had last week was caused by me feeling generally unwell, as I'm feeling much more positive again this week.
On the whole, life is good :)
Wednesday, 30 May 2012
That's the way the cookie crumbles
Well, I did know it wasn't going to last but that doesn't stop me from feeling a little sad that the spell of feeling well is over :( I've been feeling ill for a few days, initially I thought it was mainly down to the weather as I don't get on too well with the heat, but no, my GP confirmed today that I have a chest infection. Stupid lungs causing stupid problems. Still, I don't feel as poorly as I often do when I have a chest infection, so hopefully the Amoxicillin will stop things from getting worse and I can avoid hospital!
I don't have much else to say, work is going well, uni is going well, a few other things..... not so well. I'm not sure how much of that is down to me feeling generally fed up/down/unwell though, so hopefully things will pick up.
Oh, in other, better news, I did try a Starbucks Chocolate Cookie Crumble Frappuccino today - yum!!!!
I don't have much else to say, work is going well, uni is going well, a few other things..... not so well. I'm not sure how much of that is down to me feeling generally fed up/down/unwell though, so hopefully things will pick up.
Oh, in other, better news, I did try a Starbucks Chocolate Cookie Crumble Frappuccino today - yum!!!!
Subscribe to:
Posts (Atom)