Tuesday, 31 May 2011


I go back to work!! I'm absolutely dreading it, but I know it will be fine once I'm there. Over the past few nights I've been dreaming about it, not quite nightmares but they've been pretty horrible dreams. I wouldn't have said I was particularly worried about returning to work but I guess my anxieties have been manifesting themselves in my dreams. I'm only there for 3 hours and I think it'll be that way for a week for so, then I'll gradually build up to full time hours.
I got fed up of the lack of communication so emailed everyone I could think of last Friday to push them along. I'm now wondering why I did that when I could have sat quietly at home and been forgotten about, but I KNOW it will be fine once I'm there. Once I've walked into the office and spoken to a few people, it will be fine *repeats to self*

I was thinking earlier that this has come at an inconvenient time considering the state of my stupid lungs right now. I've had to whack the Prednisolone back up to 60mg, which I'm really not happy about but I was even unhappier with my sats of 88% and potentially needing to go back into hospital!
Then I thought some more about this; my 'good' days are definitely less and and less. (Just to say, I know that my bad days are nothing compared to some other people). Over the past year and a bit I've learnt how to manage my asthma better, well better than I was anyway! One example; if I can't sleep during the night then I'll sleep during the day - my lungs tend to settle down at about 7am after a rubbish night. Chronic lack of sleep due to horrible lungs generally comes before I get to the point of needing hospital.
Once I'm back at work, obviously I can't do this. I'm worried that things like this are going to cause a problem with my drive to remain working rather than be unable to work for health reasons. I guess there is no point in worrying about that now though!!

Anyway, I didn't get out of bed until after midday for the reasons I mentioned above, so my chances of getting to sleep at a decent hour in preparation for getting up by 7am aren't looking too great right now.
It will be fine. It will be fine.

Monday, 23 May 2011

Agreeing to be different

I suppose this follows on quite nicely from my last post.

I've mentioned before that I volunteer for the Samaritans. I've been doing it for about 8 months now, I'm still classed as a 'new Samaritan', technically still in training, I have 5 shifts left before I get signed off and lose the 'new' to become a Samaritan :)
We have to commit to a certain amount of training hours a year, a 3 hour shift a week, and a 4.5 hour night shift a month. I think the commitments are different for individual branches. I have my last 'new Samaritans' training session next week, then I'll be attending the yearly refresher courses starting next year.
I don't have a problem with the commitments, but I have found that my lungs aren't particularly happy when it comes to night shifts. The early hours of the morning are when my lungs normally play up, so being on the phone talking to a potentially distressed or suicidal person whilst struggling to breathe is not ideal! So far that hasn't happened, I've been wheezy and coughing but not to the point where I'm struggling, and thankfully this hasn't happened when I've had the distressed callers, I've been lucky in that it's only happened when I've been talking to people who want some company in the middle of the night, so I don't feel quite so bad if I have to keep coughing and apologising!!
Also, I don't get home until 4am, and that's if I manage to leave on time. Obviously, if I'm in the middle of a call I can't go home until the call has come to an end. My lungs invariably play up on the 35 minute drive home, throughout the little sleep I get and into the next day.

I know that when/if I return to work as a nurse I'll be able to get out of doing night shifts if it becomes a problem. I thought about asking to be allowed off Samaritans night shifts but I decided against it; I don't really like to make myself different to other people, and I thought I'd manage unless it became a real issue.

The branch director phoned me the other day to ask if I'd like to be exempt from night shifts on health grounds. After umming and ahhing for a bit, I agreed. I guess when it comes down to it, it is a volunteer role, I'm happy to give my time and money (petrol costs), but I shouldn't let it have any impact on my health.

On one hand I feel guilty, like I've used my lungs to get out of something that majority of people don't like doing. Also, it's often the case that you get the most 'rewarding' and genuine calls during a night shift, we're more likely to get people calling who are in distress in the middle of the night rather than people phoning to hurl abuse down the phone or the sex callers. So I'm going to miss out on those calls.
On the other hand, I don't want to do night shifts anyway, my lungs always play up during/after a night shift, and it's stupid of me to do something that I don't have to which makes my lungs unhappy.

I did my last night shift on Saturday night, I didn't leave the branch until 4am so by the time I got home and into bed it was almost 5am. Then I hardly got any sleep through wheezing and coughing. A perfect example of why I'll be better off without doing night shifts! I feel like it takes days for me to recover afterwards.

So, the fact that I don't have to work night shifts as part of my Samaritans commitment makes me different to most of my Samaritan colleagues. I've decided it's the best thing for me and my health, but I still feel guilty about it. I guess this is part of me trying to accept that having brittle asthma does make me different to other people.
I'm trying to sell it to myself that if I accept little differences, then hopefully that will prevent bigger differences, little differences = not working nights, bigger differences = asthma ruling my life. If I accept that it's better for me not to work the night shifts, hopefully it will stop the instances of asthma symptoms/exacerbations caused or contributed to by working during those early hours and lack of sleep, and maybe even reduce potential hospital admissions.

But I still feel bad that I've been given special treatment.

Tuesday, 17 May 2011

I hate to admit it, but.....

.....I'm exhausted.

For years I've been told that I need to take the time to recover after asthma attacks and hospital admissions. I've always laughed it off, I'm far too young to need to 'recover', all I do is sit around in hospital, surely that's plenty of time to so called 'recover'.... in case you couldn't tell, I have big problems in using the word recover in relation to me!

When I first started to have hospital admissions over 5 years ago, I used to return to work the day after I was discharged. Nobody paid too much attention, I used to keep it quiet as I knew people would disapprove. Eventually Occupational Health picked it up once I qualified as a nurse and was working under a manager who knew I was in hospital, as opposed to agency work and student nurse placements where no one really cared as long as I did what I was supposed to do. Looking back, I can now see that I really wasn't helping myself by doing this, my admissions were so frequent but I just couldn't see (or refused to) that I was making myself worse by pushing myself. I worked 60 hour weeks for 3 years, that would be hard on someone who was completely healthy, nevermind someone who was struggling with their health, and frequently in and out of hospital.

Even though I can see this now, I find it so hard to accept. During this admission I was pushing for discharge, one of my respiratory nurses came along and tried to make me see that I needed to rest. Rest?! I laughed and gave her my usual spiel of not being an old person, and I wasn't planning to go home and run any marathons. We always have the same conversation, I'm sure she knows what I'm going to say before I open my mouth, but... I just can't accept that I need to rest/recover/take it easy.
When I eventually did make it home, I can't say that I did much but I felt awful afterwards. I find it impossible to go home and do nothing though, I live on my own and nobody else is going to do things like clear up after baby Tommy (my gorgeous cat), feed baby Tommy, make me something to eat and drink, tidy up, etc etc.

I guess it's all part of my determination and sometimes stupidity in refusing to let this rule my life more than it already does. Yes, I need to be in hospital every so often, but look, I'm fine now, I'm just like any other 'normal' person.
But I'm not, I have brittle asthma, I have life threatening asthma attacks, I've come very close to dying a few times and I'm lucky to be alive and not have more long term complications. This is another thing I find hard to say, it sounds so dramatic but it's the truth, it's what I'm told by my Drs and nurses, and what is written on my discharge summaries.

Meh, see now I want to delete all these because it sounds so over the top. There are a few people I've come across who are all doom and gloom and drama and look at me, I don't want to be like them!!!!
But no, I will post this, I guess it's been therapeutic in a way, to admit how I feel when I spend most of my time refusing to accept it, accept that my stupid lungs do make me different to other people, and that 'recovering' from acute attacks/admissions is part of my condition.

Friday, 13 May 2011

Hospital and escape!

Well for a start, I'm very confused over where my last update is! I know it was posted, I had someone comment on it (thanks Wendy) but now there is no sign of it! Weird.....

In the early hours of last Friday morning I eventually gave into these stupid lungs of mine and called an ambulance. I don't remember very much after that point, I'm told that when they arrived my sats were in the 60's% and I was given lots of adrenaline, nebs and oxygen. I became more alert not long before we got to hospital and had the paramedic telling me that he hadn't seen me in a while. It's been well over a year since I last called an ambulance but there seems to be one poor paramedic who gets me a lot and even though time passes, I guess he remembers me as I have a tendancy to go into respiratory arrest on him!
When I got to hospital I felt slightly better but ABGs were pretty shocking so BiPap was discussed, thankfully they didn't feel the need to go down that route as I can't imagine that I'd tolerate that very well! So instead I had IV magnesium, more back to back nebs and O2, and my old friend IV aminophylline.
Friday night I started to deteriorate again with aminophylline, O2 and back to back nebs so I was given more IV magnesium and my lungs slowly calmed down.
IV aminophylline came down on Sunday morning but Sunday night was a bit of a nightmare. pCO2 rose, pO2 dropped and I spent most of the night on 100% O2 as anything less would make my sats drop below 90%.
Monday morning I finally felt better and managed to get some sleep during the day.
There seems to be a common theme whenever I'm admitted to the respiratory ward - most of the other patients in my bay are crazy! Elderly old ladies with dementia and infections are not a great combination!!! There was a very sweet old lady in the bed beside me, she was very unsteady on her feet and when night time came, she just got up and wandered around until someone found her and walked her to the bathroom. Monday night I had the shock of my life when I'd just gotten to sleep and she fell on me! LOL!!
Tuesday the IV aminophylline finally came down, and eager to get home I stopped my nebs. I'm not allowed home nebs so have to be off them for 24 hours before being allowed home. Tuesday night, one of the other ladies who was a 79 year old tiny thing, caused such a fuss and was agressive that security were called up. It was so funny, these 2 big security blokes turned up to control this tiny old woman!
Wednesday I was initially aiming to go home but my peak flows had dropped and I was wheezy so I very reluctantly agreed to stay another night. Wednesday night whilst I slept, 79 year old agressive crazy lady came over to my bed, pulled back the covers and shook me awake! She was looking for her husband, when she realised I wasn't him she went onto the next bed and woke up the next person!! Haha if it hadn't have been me being woken up in the middle of the night I think I would have found it quite hilarious!
Thursday review came and the stupid dr decided my peak flow was still too low to discharge me. I considered self discharge but thats not really a route I want to go down as it looks so bad in my medical notes, and if I did ever end up being readmitted soon after then it would be my own fault. So I kicked up a little fuss (I don't like to be too compliant ;-) lol)and finally agreed to stay again, but made it clear that I thought it was stupid to keep me in hospital just because they were worried low peak flows = massive asthma attack. Tuesday morning onwards I wasn't receiving any treatment that I don't have at home so I was literally sat there incase I became ill, and I'm more than capable of looking after myself at home.
Today, peak flows were still rubbish and sats were down. The poor SHO came along and I immediately started with my arguement that I wanted to be discharged. My consultant wasn't around this week and I wonder if I'd have been able to go earlier if he was. No one was willing to take responsibility discharging me with crap peak flows so another consultant came down to see me. Thankfully he agreed that they couldn't keep me in hospital just incase I became poorly, so said I could go home on the condition that if I feel even slightly worse over the weekend I go straight back in, and that I don't exert myself. Haha like that's going to happen!

So, I finally made it home! :D When I get home after a hospital admission I have to throw everything that has been to the hospital in the washing machine, I always feel dirty in hospital. So washing machine on, showered, moisturised (hospital makes my skin dry) and clean pjs on. Then I felt much better! Tommy baby had decided to be sick all over the floor at this point though, I swear, he'd gone walking around my flat being sick in different places, so that was a nice welcome home present lol. Then I had to clean out his food area and litter tray, by this point I was feeling pretty exhausted so I resisted the urge to get the vacuum out. I'll have to save that little chore for another day as I always feel pretty ill and exhausted for a day or 2 after a hospital admission. Then again, that depends on how long I can stand looking at the messy carpet for!

Tuesday, 3 May 2011

Postivity shines!

It's world asthma day! Only people I speak to and see on a regular basis know about my horrible lungs, I don't really publicise it or talk about it very much. Recently I realised I'm treating it as a secret, something I'm ashamed of because of the huge impact it has on my life. The past week or so I've been including asthma in my 'facebook life'. I posted a link to my Get it off your chest story, and I posted a status advertising world asthma day (granted I stole the status off someone, but that's only because it was so good!) The result has been people sending me messages who I haven't spoken to for a while; asking about brittle asthma, how it effects my life, and my medication. So there, I have raised awareness of brittle asthma and I resolve to stop hiding my condition :) I can't complain that the lack of asthma awareness when I hide my own condition!

This morning I had a work meeting with a HR manager and my union rep. I wasn't expecting much to come out of this meeting, there is a bit of a pattern to these things - I get my hopes up, come out of the meeting feeling unsure about what is happening, then over the coming days I feel disappointed and worse than I did previously when I realise I won't be returning to work anytime soon :(
Anyway, today was different!! I've been given a date to start a gradual return to work, it's 2 weeks away but I'm not sure Occupational Health will have had their input by then so it may be delayed.... but that is just basically ticking boxes as Occ Health confirmed I was fit to return to work ages ago and I'm not any worse since then.
I don't want to be too optimistic or positive about this until I actually return to work, I've built my hopes up many times to have them smashed when it all goes wrong.... but I can't help feeling good about this latest development :D

This isn't a return to my nursing position, that is a seperate ongoing battle, but I'm feeling quietly optimistic about that too. Playing a waiting game there right now.

And finally, I can't blog without giving my lungs a little mention. They're being a complete nightmare, at times I'm absolutely fine and other times I'm breathless and wheezy at rest so moving around isn't much fun! I don't know what to do or say, but I'm trying my best to avoid hospital and so far I'm succeeding!!

:) :) :) :)