Scary medications

I've been lying low and keeping quiet lately, 'things' aren't going so well and posting the ins and outs of my life online doesn't really appeal to me! So, concentrating on these lungs of mine;

I had a review with my respiratory consultant, we agreed that Azithromycin wasn't doing anything for me so that was stopped. He brought up Methotrexate. When I hear that drug I automatically think 'cancer', which leads to 'horrible side effects', so I said I was pretty reluctant to take drugs like that. Since the appt I've read up on Methotrexate and seen that it's actually used in a few other conditions too, and some people with severe/brittle asthma have found it very helpful. Food for thought.... I'd love to hear any experiences from anyone who has taken it!

I mentioned in my last post that I'd been feeling pretty unwell. This week it got worse, I rarely get chest infections but I really felt like I had one. So I made an appt to see my GP that afternoon, by the time of the appt I felt better. I HATE it when that happens!! Obviously I like feeling better, but it's so annoying when I end up saying - I feel okay now but earlier I felt really ill and was coughing up gunk blah blah blah. Anyway, if it had been my old GP I would have cancelled the appt but my new GP is so lovely. He has A&E experience so he understands asthma that can quickly deteriorate, for me this is great! Outcome was, I have a course of antibiotics to take and had to bump up the Pred again :( I felt so much better after a few days and my peak flows have started to pick up again, so it's all good :)

Playing it safe

Well, my plan to blog more often clearly failed! I haven't really had anything to write about though, and I didn't want to write rubbish that even I found boring!!

Work is going well. Whilst I was away lots of new people were taken on, and I now sit in a different office with different people. It's good as I don't need to worry about my previous dilemma of feeling bitter towards the people who treated me rather unfairly - I can happily be myself at work :)

Yesterday, my respiratory nurse came up to the department to do some training on asthma. It was basic, general asthma education rather than focusing on brittle/severe asthma like I was expecting, but it sounded like everyone found it useful.

Today I had a review with my respiratory nurse. I keep a peak flow diary but every so often I get bored with it and give up. Since being back at work I've been good and religiously kept it. A pattern has emerged; as my working hours have increased, my peak flows have gone down. Even though it's so blatantly obvious, I hadn't made that connection, it took for the nurse to point it out!
I've been increasing my hours each week, and in all honesty, I felt that I could have easily worked more but I did as I was told as increased my hours slowly. This week I worked 9am-3pm, and the plan was to work 9am-4pm next week, then full time hours thereafter. After my respiratory review, I wasn't sure whether to say something and ask to keep my hours at the same, ask to decrease them, or just wait and see if my lungs settled down. I was off work for 15 months, on one hand I think that most people would have trouble readjusting to working hours, and I have a lung condition on top of that, then on the other hand I think I'm just being pathetic and stupid and need to just get on with it!
Anyway, this week I've been experiencing some chest pains (coronary artery spasms resulting from my heart attack, I just have to take some GTN spray and I'm fine), and headaches. So along with the increase in asthma symptoms, I decided I was going to say something. I went to my line manager and said that I might have to slow down the increase of my hours to full time. As soon as I explained that I've been really tired, finding mornings hard and feeling generally shit, she straight away asked what I was going to do about it. It turns out that the asthma education they received yesterday has really made a difference! They'd heard about peak flows and diaries, and because I had my review today, I had mine with me so I showed it to her. She straight away recommended that I come in later next week and see whether that has any effect on my lungs in the morning. Also, I don't increase my hours, so I'm actually going down an hour and working 10am-3pm next week. I do feel a bit bad for being so 'pathetic', but I hadn't taken time to think about how I've been feeling, and actually, I haven't felt too great this week!

I work on the third floor of a building, I used to use the stairs unless I was feeling really bad, but these days 3 flights of stairs is not a good idea so I always use the lift! The lift is out of action on Tuesday for routine maintenance. I mentioned it to my line manager, I said I was going to come in earlier than normal so I could use the lift before work started on it, but no one else was very happy with that idea! Then, some bright spark mentioned that if my lungs did misbehave, it would be an absolute nightmare to get emergency help. The managers are so incredibly twitchy where I work, they seem convinced that I'm about to die any minute. If anything does happen and the plan I had to agree to to keep me 'safe' doesn't go smoothly, I'm pretty sure I won't be allowed back to work at all. Therefore, I've agreed to take the day as annual leave, I'm still owed loads of annual leave from last year which I probably won't get so I guess it benefits me to take it. I'm not entirely happy; I feel that people I work with are trying to decide what is best for me. But, I can see that if anything bad at all happens then that will be enough to convince management I shouldn't be working in that environment, and that will be the end of working there! Also, I had a battle convincing Occupational Health to let me back, they say there is a very good arguement that I shouldn't be working with unstable asthma. I need to keep these lungs as well behaved as possible whilst in this delicate situation of convincing people that I'm well enough to be at work!

Playing it safe doesn't sit comfortably with me at all, but I plan to do something nice on Tuesday rather than sit at home feeling that I should be at work. I can't say I ever turn down the opportunity to sleep either, so I will make the most of the extra hour sleep a day I'll be getting next week!

When it all goes to plan

After a looooooong time of living in a state of chaos, it feels like my life is settling down and starting to go the way I'd like it to!

I'm back at work and it's going well! I feel incredibly stupid and it takes me forever to do anything, but I'm slowly building my confidence back up. I've only been working 3 hour days so far, which although has been nice, at the same time it's been a little frustrating as I feel like I'm just getting into my work then it's time to go home, then the next day I have to start all over again. I'm increasing up to 5 hour days next week and I'm actually rather looking forward to it (someone needs to remind me of all this when I'm back working full time and wishing I didn't have to work for a living!!!!)

Now, this is the temporary admin job I'm talking about. I'm sure most of you know that I'm actually a registered nurse but was stopped from working as a nurse about 3.5 years ago due to health reasons. I had to fight hard to be allowed back to work in an admin role, and fighting to return to nursing sometimes feels like a pointless, endless, unwinnable task, but giving up has never really been an option to me.
Today I had an assessment, the report from this will have a BIG impact upon what ultimately happens regarding my nursing career, I'd actually go as far to say that my future nursing career was dependant on this report. I hoped it would go well, but I've learnt the hard way what happens when I get my hopes up. The assessment went so much better than I hoped, I can't tell you how happy I am :D The report still needs writing up, submitting to various people, then I need to attend a hearing so it's not a case of me being able to return to my old job, but right now, my 'arguement' to return to nursing is the strongest it has been since this all started :D :D
{I'm still very wary of being too positive and expecting a definite return to nursing, there is always a little part of me waiting for something bad to happen/crop up. So for now, I'm just happy that things seem to be looking up).

Then we move onto those little lungs of mine. Would you believe that they're actually co-operating with me?! I've started the slow decrease in Pred and so far my peak flows are holding. My peak flows aren't great, actually they're pretty awful compared to my best, but symptom wise things are okay. I've learnt over the years to pay more attention to my symptoms rather than go by a peak flow chart alone, for me the biggie is how well I sleep. Right now, I am waking up needing Salbutamol, but I'm easily getting back to sleep, and when I get up I feel rested. This is good :D

I like it when life feels good :D

I survived :)

Surprise, surprise, my return to work was absolutely fine ;)
I got out of the lift, looked down the long corridor that I needed to walk down, took a deep breath then one of the girls I used to work with popped out of the kitchen and saw me, so I was able to walk down talking to her. That was a massive help!

The department has expanded since I was last there so there are quite a few new faces. It was really strange, it didn't take long for me to feel like I'd never been away. Time goes by but not much changes!! I am doing a slightly different job, but I know the basics of it so I'm picking it back up. The people I'm working with are being great too, and don't seem to mind when I'm asking them stupid questions that I really should know the answer to. I couldn't even remember my usernames and passwords so everything has had to be reset for me!

I'm going to try to explain something without going around the houses and confusing everyone and myself. When I initially went off sick, my work friends kept in contact with me and I met some of them at weekends/evenings. Gradually, it became apparent that management had a problem with me returning to work there, and eventually I had less and less contact with people from the department. Partly because I was pretty angry about what was happening, and partly because (they said) they felt awkward about what was happening and didn't know what to say to me.
An office temp was brought in to do my job, my desk was emptied, and all personal items put in a carrier bag which I was told were on a shelf for me to collect.
I got an invite to the Christmas party the evening before the event, and the text was something like 'hi, we're having the christmas party tomorrow, we didn't invite you as we didn't think you'd come, but {the manager} thinks we should have invited you. So, do you want to come? I can email you the menu if you do'. I declined the offer as I didn't really feel welcome!!
When I previously worked there, I was the social butterfly. I was always walking around talking to people, arranging department night outs and christmas parties. I vowed to myself that when I finally returned to work that I wouldn't go back to how I used to be, I'd turn down invites to go out, I'd just be there to work rather than be social.....
However, I just can't help myself!! I worked a total of 9 hours last week, and I've already been drawn into a conversation about previous department nights out, how we should all get together for another night out drinking cocktails, laughing and joking..... It's natural for me to be like this, I'd have to try really hard to go to work and not be socialable, and I think I'd hate that.
BUT (and this is the point of this ramble), I can't help feeling that I've betrayed myself in some way. They treated me really horribly but I've gone back and behaved like it doesn't matter. On one hand I feel disappointed in myself that I've let it all go, on the other hand, I feel like it's a good thing that I've let it all go and that I'm not holding any grudges..... sigh....
In any case, I think I've learnt my lesson that management are managers, not friends (in this case anyway). They've hardly acknowledged that I've returned to work and absolutely nothing has been said about the past 15 months! I guess it's best that I(/we?) just move on.

Anyway, that aside, I'm really enjoying being back. I like having a purpose to my day, I feel better in myself when I've done something productive, I feel happier when I have contact with people, when chatting and laughing is part of my day.

I think adrenaline has kicked in and helped me out this week. I've been seriously lacking in sleep, from both miserable lungs and not having re-established a work sleep routine. My morning peak flows are not great at all, and I'm having lots of attacks. They're mainly in the afternoon/evening which makes sense as that's when I'm feeling most tired, and they're relatively short and easy to get get in control of, which is unusual for me but I'm not complaining!

So far, so good :D

Tomorrow

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.

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.

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.