So, it's nearly a week to go before I have to have the mannitol challenge. As silly as it sounds, I am as anxious about the week without meds as I am about the test itself! The booklet instructs that I have to start stopping my meds a week before the actual test and without being able to take more time off work unless I want to face disciplinary action, I have no idea how I am going to cope without the drugs...
Also had my first bone density scan recently and should get the results soon. At the age of 26, I really don't want to have to think about osteoporosis on top of everything else.
Apologies for the rant, it's just been a trying time recently and I'm struggling with coping.
I would be too in your position - rant away! I think it makes sense on the one hand to stop for a week given that you don't want to have a false negative, but on the other hand it is pretty difficult to actually do things when you have to be off meds and I don't think they always consider this. Luckily I was actually in hospital for various tests when I had to stop mine and it was for a lot less than a week (though I can't help wondering if this affected the test).
I seem to remember you were having a lot of problems with your work being unreasonable and trying to discipline you when they should be trying to make 'reasonable adjustments'. Have you got any further with sorting that out or is it more stress on top?
Good luck with it all and don't worry about ranting as things sound very stressful.
xx
Hi Philomela,
I think I would feel better if I was in hospital for the time running up to the test, or at least not be at work. As it is, I have to take my inhaler 4-5 times during a shift just to get through it, and that's on full meds.
You were right, I was having problems with my work trying to take the disciplinary route. Fortunately, it is company policy that this meeting should have taken place within a week of my return to work, but they failed to hold the meeting on time and so it was written off. I have been told, however, that the meeting will take place should I take any more time off work due to illness. This, as you can probably imagine, places unreasonable stress on me, making me struggle to go to work on my bad days (and thus risking my health) when I should probably call in sick for a day.
I understand that a lot of people are reading this and probably thinking ""she has nothing to worry about compared to other people"", and rightly so, I don't know why I am struggling so much with this...
• in reply to
I understand that a lot of people are reading this and probably thinking ""she has nothing to worry about compared to other people"", and rightly so, I don't know why I am struggling so much with this...
Jeez, now wonder you are so stressed and feeling horrible I dont know any answers to the work issue, except to say that asthma is covered under the DDA - I dont know what you do, are you in a union or anything? As it is covered by the DDA I would think they have to make reasonable adjustments for you with their expectations and policies etc. Might be worth half an hours free legal advice.. not that you really want to be having to deal with such a pants lot.
This isnt a competition. Illness is relative - knowing that someone is worse or better off doesn't make my issues any different, no more than it does for you! My grandma always gives me a bollocking when I sit there and say ""well, I should be grateful.. at least I dont have CF... there is always someone worse off..."" - and she's right. So now Im telling you the same ;-p
Cant add much useful to the mannitol thing, its not something within my realm of knowledge or experience, just wanted to say good luck with it
Lynda
HI Chukkin,
If anyone is reading this and thinking that then they shouldn't. I think anyone would struggle with what you're having to deal with and it affecting your work.
I don't have severe asthma, I've never had to be in hospital with it (the admission I was talking about was just for tests), but it doesn't mean that asthma/whatever else is going on with me (bit confusing atm) doesn't affect me. In fact it has been affecting my work recently. I'm well aware that many others (including you, because luckily I am in an okish position where work is concerned right now though am applying for a new job where I may not be if I have to take a lot of time off) have it much worse, and I also do the 'I shouldn't complain' thing, but actually, it is completely reasonable to be stressed and have trouble coping when health issues affect your life like this.
It's good to keep a sense of perspective about it but feeling guilty that someone else is worse off won't help them or you, and you shouldn't feel like you're not entitled to have a rant or have your problems sorted because it 'could be worse' (I keep having to remind myself of this). You're entitled to feel what you feel and I find if I start getting into the 'well it could be much worse' then I just feel hopeless and depressed and like the world is an awful place. If you could do something about someone who is worse off than you and knowing spurred you to act then that's one thing, but you can't fix someone else's asthma!
oops bit of a ramble there but just thought I'd put my twopence on the matter...
Shocking re your work, they really shouldn't be pressuring you to risk your health like that. Now that you don't have an imminent meeting ie a bit more time, would you be able to talk to a union rep or someone who can advise on this?
Thinking of you and feel free to rant away.
Hugs x
Hi Philomela,
I suppose I am just frustrated. Three years ago, I was a healthy non-asthmatic. Now I have severe brittle asthma which lands me in hospital after nearly every attack. I spoke to my manager this morning about my not taking medication starting on Monday and all she could say was ""oh, does it have to be next week?"". For me, next week is a very busy week at work and although I wasn't expecting to be given time off, a little understanding would have been nice.
Re speaking to a union rep, I almost have the feeling that if I were to speak to someone, management might just see me as creating more hassle. Grrr...
Many thanks for your support here, its such a big support to know that ones feelings are valid and not just one being paranoid...
x
You're welcome - I do know how you feel and am always thinking 'should I post this when others are in hospital etc?' But then as the moderators have said elsewhere, this is a board for everyone, mild to severe and in between, so you have a perfect right to say you're struggling and want a bit of support! The current goal of treatment is to be able to lead a normal life with asthma and if you're very far from that then it is understandably frustrating. Also, your circumstances are not someone else's; it is hard having severe asthma as I can only imagine, but it's probably even harder at the start when you're still trying to adjust to all the things that have changed.
I'm no expert on labour law but I am pretty sure that it's extremely dodgy, if not outright illegal, for your work to give you a hard time or take action as a result of you speaking to a union representative. I get annoyed with the high-profile transport strikes etc so I'm aware it's not always this simple (don't want to get political here though ;)) but the whole point of a union is supposed to be to protect workers against this kind of bullying behaviour by their employers - if they work properly this is what they do and it's not acceptable for the employer to try and stop you having access to this support. I know they haven't actually, but the fact that you're worried they might says a lot about their attitude. And yes, a bit of understanding would be nice - especially since I bet if you were 'visibly' disabled, or were pregnant and needed time off or adaptations for that, they would be more careful so as not to be seen to be discriminating on grounds of illness/disability or against pregnant women.
Very true, they are more understanding and considerate to those who have a 'visible' disability or are pregnant. A disability is a disability whether others can physically see it or not. Yes, the attitude at my place of work can be extremely hostile and leaves a lot of people feeling very isolated - myself included. The other issue is that the union rep is not well known for confidentiality and any problems which have been brought up by others in the past have been spread through the company like wildfire.
I suppose I will have to 'weather the storm' as it was, and deal with what happens when it happens. I'm really not comfortable talking to the rep.
Thanks again Philomela, you have been a great help x
Glad it's helped! I think your company has a few issues, shame you're caught up in them as it sounds unpleasant even if you weren't having to deal with asthma and their attitude towards that.
I see re the union rep - very unprofessional and rather shocking that someone in a position of responsibility like that can't be trusted to keep their mouth shut about something confidential, but I can definitely see why you wouldn't want to talk to them then!
You've probably already looked this stuff up but maybe this will help and possibly point towards advice you can get outside work:
Stopping meds is pretty daunting, especially for a week. If you start really struggling then get in touch with your clinic/cons. A week sounds like a long time considering that your lungs are sounjding pretty reactive already (needing reliever five times in a shift).
Could you get in touch with the union directly to express your concerns about your rep with particular reference to thier inability to maintain confidentiallity.
Good luck with it all x
Good luck with the week without meds and the challenge itself! I think its perfectly reasonable to be freaky about stopping meds, especially when you cant take it easy. I have to stop pred until tuesday and my current plan is to pretty much not move for 4 days!!! do let us know how it goes
have you had a sprio done at the hospital you're getting the mannitol challenge at? Depends on how cross your lungs get, but if they have an old spiro for you, and your LF is already reduced enough from that to give a positive result i think in a lot of places they just dont bother doing the mannitol challenge (as clearly your LF is reduced without the meds) thats what the lab tech when i had my spiro said anyways hope that gives you a bit of reassurance - they do what they can to stop you feeling rubbishy!
re work, thats really harsh of them - and unhelpful! Would like to see them have severe/uncontrolled asthma for a few days and see how much they feel like working! You could just do what i did when i was told my attendance was getting dodgy - tried far too hard to get to a seminar when i was struggling (im at uni and not work) and said - ""sorry - when you have a sec could you ring me an ambulance"" felt bad for my tutor - wasnt really his fault, but the uni have been much more supportive about me needing time off!!! (BTW just to be clear - not ACTAULLY reccomending that - but it is satisfying!!!)
and seconding everyones 'its not a compettition and if it affects your life you have every right to rant about it'
Hi everyone,
Lou - thanks for your support. I have arranged an appointment with my gp on tuesday morning, which will be two days after stopping meds and straight after a shift at work, which reassures me slightly. I hadn't actually thought about contacting the union directly rather than talking to the rep! Shows you how much my brain is working right now! I might consider that after the challenge is over and things have settled.
Lynda - many thanks for your kind words, I was feeling really overwhelmed by everything yesterday. Thankfully, I am not working today, so I can just sit and try and calm down! I always say ""it could be worse, I could have CF"" too! But what you (and others) say is true, illness is relative. Take the cold for instance, one person who has it will do nothing differently in their daily lives (go to work/school etc) whereas someone else will completely shut down (never get out of bed/don't manage to go shopping etc). This makes me feel slightly better in that I am not acting completely irrationally!
Soph - it made me laugh so much reading about what you said to your tutor! I might have to try that one day... I think the spiro I did before was at the GP surgery not the hospital, but the hospital have various other lung test results for me. I don't really see the point in the test (other than to have a definite it is asthma or it is definitely not asthma). My peak flow is currently 280, with my predicted being 500. Must say though, I have NEVER reached anything more than 400.
Thanks again everyone, it is so reassuring to have people who are willing to lend a bit of support when one is feeling down...
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I dont know any answers to the work issue, except to say that asthma is covered under the DDA - I dont know what you do, are you in a union or anything? As it is covered by the DDA I would think they have to make reasonable adjustments for you with their expectations and policies etc. Might be worth half an hours free legal advice.. not that you really want to be having to deal with such a pants lot.
Prescribed Montelukast. Feeling a bit down/rant.
I'm at a bit of a loss
A little of my Asthma Story...A Little Rant...
What next? Feeling a bit down with it all
