So...the fun continues! I'm still really sick. I finally spoke to my pulmonologist today, who upped my pred. to 60, told me to do nebs every 4 hours round the clock, and said that the rattling in my chest is mucus plugs that will hopefully come up over the weekend. And if I'm not better by Monday, I can't go to work. Which, seems logical, as I can't be doing neb. treatments every 4 hrs. at work. And anything at this point makes me out of breathe or go through like a 3 hr. coughing attack. Oy.
Of course I can't concentrate at all. I think it's due to the nebs, pred, and sleep deprivation. Oh, he also doubled my dose of guifenesen, to thin the mucus. Mind you I've been on the stuff for about 4 months!
Anyways, I think I need to be hanging out on my couch and not doing much of anything. But my brain is stuck on the state of my apartment. A good friend came by today and helped me take out trash and some boxes, so that helped. I hate asking any one person to do too much though.
So here is my quandry. My apartment is pretty dusty as this attack has been going on for at least three weeks so of course I haven't exactly been dusting. Then when I am like this, it somehow seems smarter to let the dust just be in the corner rather than stirring it up? But really the real problem is someone needs to vacuum. Now I figure I could probably this once pay for someone to do it, but what my brain isn't making sense of is...will stirring up all that dust make things worse? Or is it better to let it sit until later?
The other thing is I'm quickly running out of clothes. Now with that, I'm thinking I might be able to get away with taking a few things over to a friend's house, who has a washer and drier, so I can sit next to it for a few hours. This would be a much better alternative to doing laundry outside in the building next door to mine in the cold.
But am I just crazy? I'm not really sure I should be doing any of this really. It's just that my brain isn't working right, and I really am running out of clothes! Oh, and I keep thinking if my apartment were dusted and vacuumed that would maybe actually help. Really, it probably isn't as messy as I think, it's just that I've been staring at it for a week and not able to do much about it!
I really hope the increased meds make a difference to your lungs soon, breathing is such hard work at times lol!
My question is this. If a friend of yours were in your position and didn't ask for help, how cross would you be with them?
The jobs you mention are easily done, you're not asking them to redecorate your apartment or anything big and dusting.will definitely help your lungs.
Hugs x
High doses of pred fry my brain too.
Your friends will be happy to help with anything, they just don't know what to do until you ask them.
I don't react to dust, but I guess dusting will help. I'd suggest doing it with a damp cloth so that it sticks to the cloth rather than get pushed around and fly into the air.
I hope you're feeling better soon. And I don't think you should head to work until you've got enough energy to clean your appartment from top to bottom. Xxx
if you think it will make a difference, and i suspect it might! then i would retreat to a differnet room for a good few hours after its been dusted (keep one room dusting free so that when everything is stirred up you have a place to go!) damp dusting is best, and a good vacuum cleaner that will catch more dust than it mixes. and also having a window open while the dusting is done tends to let some of the stuff out!
like others have said, im sure if your friends were in the same position you wouldnt think twice about asking them for help. i felt guilty about asking people to walk to the pharmacy for me and ended up in A&E coz i tried to go by myself. they are now threatening to steal my food if they find out i've tried to go myself again! lol! i just try to make it as convinient as possible for them, so not specify WHEN something needs doing, or if they are busy and there is something i can do to help out i will (i often cook/do the dishes, as i dont find this affects me and students tend not to like doing it) but tbh im sure none of them expect me to do anything at all. theyre my mates and theyd do it anyway!
I am in a similar situation to you but have only been unwell for a week. I had some energy for the first time today and the sun shining over here helps! I have been setting the timer on my phone for 5 minutes each hour and tackle one job for that 5 minutes. I have done enough after 4 lots of 5 minutes (no more energy or breath) but I have made a dent in my washing, dusting (damp, disposable dust cloths), washing up and vacuuming my lounge.
Maybe your friend can take your washing and return it tomorrow so that you don't have to go out in to the cold.
I hope you start feeling better soon xxx
You guys are the best! You're right, if they are my friends I think they really want to help, an have offered. It does help to have specific, time portioned things that each person can help with too, so it's not too overwhelming!
I know my one friend wanted to get together for lunch today, but it's a bit difficult with needing my neb. so often. I was thinking if she'd be will to do take out and bring lunch, that maybe we can hang out and eat together, and get some dusting/vacuuming done. I did manage to replace my air filter that broke, so that should help too. I can turn that up high during the dusting.
And then tomorrow I think between another friend and I that laundry might be an option. Luckily I have let it pile up, just sort of sad, as many of my clothes don't fit this week due to the pred! And the few things that I do like that are pretty/comfortable, need to be washed. Ug.
But that is a very good point to that I might need to wait until I can clean my own apartment before returning to work. A very good point indeed.
An JF, I like your idea of doing short jobs. I've been doing that as well. LOL. I completely cleaned out my sock drawer yesterday, which worked out quite well because it needed to be done, and didn't mess with the lungs too much!
One thing I will say. I've always been told I have moderate asthma. This really doesn't seem that moderate to me?? I'm grateful I don't have to be in hospital (VERY) but am wondering when is asthma considered severe? I've been on pred. most the year, well since Sep. anyways, and I was also on pred. several times last Spring. I don't know exactly what I'm saying, but am grateful this seems treatable at home, even with so many meds!
When you guys have flares, do you have to stay home for a few weeks at a time sometimes too? I just can't imagine what it is like to be able to take one preventer and have my asthma be O.K. This all seems so cumbersome at times!
I have friends and family with 'simple' asthma, one step up on their meds and things calm down within days or a week. I don't think I am severe, just difficult, atypical and complicated lol.
When I have a flare up or a virus I just have to sit and wait it out. Lots of munchies for pred and watching iplayer on my netbook and quality time with my cats but I still get bored!!
I live alone too and it is not easy managing daily living and keeping things ticking over. xx
I was meaning that if you're not feeling fit enough to do several hours of house work then you probably aren't fit enought to go to work all day. I hope you're fit/well enough to do both soon.
I was off for 5 weeks or something with a flare up and chest infection over Christmas and new year. The last couple of weeks I've managed a couple days a week, which was tbh tiring. I'm trying to go back to work on Monday and hopefully I'll manage the full week. I'm self employed so taking time off work is annoying as I don't get any sick pay.
I'm so sorry you are struggling so much. Mega not fun.
After several weeks on pred things finally seem to be improving, but for most of the last three months I have been sick enough that even small errands like getting prescriptions, shopping, etc were a risk for a flare up or else left me so exhausted that I completely crashed that night and sometimes couldn't do anything other than rest the next day. Housework and laundry was difficult for me too and sometimes caused flare ups on their own. Even resting in bed, I'd have minor flare-ups.
So it really can happen.
As crazy as it seems to have breathing stressed out by so very little, you aren't making this up or being lazy or not ""trying hard enough"". If you aren't breathing properly and you are having to put in energy just to take each breath, you are going to be tired and little things will be exhausting. And of course if you are tired, you are more vulnerable to flare ups.
I find it really really hard to ask for help. I'm really not one to speak about asking others for help, given I find it so hard. None the less, I agree with others that you should bite the bullet and ask friends for help. I don't think that any of your friends would object to being asked - under the circumstances asking for help is very reasonable. Do ask even if it is hard. The worst that will happen is that a friend will say ""I can't"" or ""some other time"".
I think your idea of defining specific tasks like ""babysit my laundry at the laundramat"" or come help me clean my apartment is great.
I love your idea of asking your friend to bring take-out.
When friends can't help, I also found that I could do some things around the house/errands by timing things to be 1/2 hour or so after a neb (or whenever you find you are breathing best).
Take care,
beth
Lou,
LOL. Yes, lots of muncbies! I ate lunch with a new friend today, who kept trying to feed me, and I had to laugh, as you know, I am endlessly hungry with no end in sight.
I'm in a bit of suspense at the moment. Totally jittery on pred. and nebs. Nothing actually tastes right including water :(. And of course I can't relax. Been better today though, although not sure if I'll be well enough by Mon. for work.
My doctor said if I need to do every 4 hr. nebs then stay home, which for now I definitely need. But not sure if I do every 4 hrs. tomorrow, if I'll have any idea by Mon. if I can spread them out?
So it's looking like maybe Tues. at the earliest, but sounds like I might need to apply for short term disability for more than 5 days off of work. That seems like a bit much for one more day.
Anyways, my new friend helped me dust and vacuum. Got me coughing a bit, helping a bit, but worth it I think as I'm already sneezing less. I also stocked up on a few groceries, which is good because it's supposed to snow tonight.
Then tomorrow my other friend said I can come over in the afternoon and sit in her warm house to do laundry, so that should be nice to have clean clothes and someone to chat to for a few hours.
I think I'm just trying to pass time until I feel better. But I hate this ansy feeling! Oh, and the rattling seems better. Still there, but it doesn't have that stuck sound, it's loser/more even and only when I get coughing. And I can mostly breathe all the way in!
Bee
Glad to hear you've gotten some help and things are beginning to improve.
Beth,
Thanks so much for your lovely post! I'm really struggling with being this sick. I don't feel I get special priveleges or anything (as I think we all get sick). But it's just so weird that my parents don't believe in illness as a religious belief, which really didn't work out well for me with my body. Then I have some weird stuff, so my doctors spent years debating whether I really had asthma or not (which it is miserable being off inhalers etc. when you really can't breathe right).
Now it's really weird. My three doctors...pulmonologist, allergist, and otolaryngologist (who ruled out vocal chord dysfunction) are like ""You have inflammation in your lungs. You are VERY sensitive to everything right now. No really...don't exercise it's not a good idea. Really just go sit still.""
And the latest of course if I don't have pneumona, it's mucus plugs that are making that wicked sound in my chest. I just am having a hard time understanding that my body is part of this crazy lung disease process that can be so bad! Not in a negative way, but in a I did nothing to cause this, I must just have crappy lungs/ a weird immune system that creates this crazy asthma. Wow. That's kind of something, right?
But thank you so much for saying what I can't quite understand...which is I didn't cause this, my lungs really aren't cooperating and most things I just can't do right now. I'm just going to have to let them heal I think.
Oh, thinks are better. The high pred. and nebs. Q4 hrs. have made things so much better. But I'm very sleep deprived, and can't concentrate at all! Oh, and I feel very weak for some reason. I'm thinking it's the strong medication? It does speed up my heart some which I think makes me tired much faster. So I'm trying to rest a bit, then I'm going to my friends to do laundry. I also like your plan of using the neb. before running a short errand. I think I will need to do that tomorrow to pick up something from the pharmacy.
Anyways, might sound crazy, but if you feel weak, and obviously I am very limited at the moment, but is there anything you do just to keep yourself a little bit stronger? I just think it's so easy to get deconditioned when you've been sitting for days!
From my experience of getting de-conditioned when I had my last flare-up I found it useful to keep active when I felt I had enough breath eg soon after meds and I would just walk for a minute or two, usually light housework or a walk to the front door to have a change of scenery. But I would ensure it was a short time and rested well afterwards. If I walked more than a couple of minutes I would be very short of breath for the next 45 mins to an hour so I used my response to the activity as a measure of what I could do without overdoing it.
Jac xx
Thanks Jac,
That helps. LOL. I just put clean sheets on my bed. That was a bit much, but I needed them to sleep tonight! Finally pulled out a chair, to do all the tucking, after taking several breaks. It sure looks comfy though!
O.K. Small rant. Maybe I need to stick up for myself better, but I am amazed how clueless people seem about how much I can't breathe. Yesterday a friend came over to help clean, which was terrific, but was using my neb. while she was here, which worked out fine, and she chatted at me, which was fine, but in the end I was just way past tired and trying to figure out how to tell her it was time to leave! But she doesn't know me as well so I understood more.
Then today when I went to my friend's to do laundry, it became a 5 hr. thing. Which I think was O.K. As it was nice to hang out and have company. She is one of those people you can be around for forever. But the thing that killed me is as I was leaving her house and carrying laundry to my car ( in the 20 degree cold), well between when I was leaving at 6 p.m. and the car...it took me about 2 hrs. to get out the door, about 30 min. which was standing in the cold. She seemed concerned but obviously didn't get that I was on the verge of having major problems due to barely being able to carry my laundry and the cold. She is a sweetheart and couldn't help me carry anyways, as she has bad arthritis, but it was a bit of a dead stop!
And then, well, there is the other thing that I realize. The second friend lived for years with a dog and cat, and even though I'm not supposed to be allergic to them I am. Which makes me realize I don't have any friends with a washer/drier who DON'T have a pet. They just seem to be so many things to contend with I guess.
And these truly are my friends who are wonderful, and really care. I was amazed though, when I did manage to stumble into my apartment with my laundry...I can tell a huge difference as my asthma attack just stopped. I guess all the dusting etc. helped, and it is a really good thing I don't have pets! I also realized recently that my next door neighbor smokes, and that my air filter broke, so I think replacing that helped too.
So it looks like I will be out of work tomorrow. I'm still super out of breathe, although breathing much better. And I will see how spacing out my nebs. go too. And I need to make a trip to the pharmacy in the hospital, so that will be a good dry run to see how that goes.
Bee
Well keeping my fingers crossed! So far so good. I made it over night 6 hrs. without a neb. treatment. Taking my first morning one right now. Feel O.K. too, because I got some un-interputed sleep in my nice clean, fluffy, newly washed bedding!
I still have this rattly sounding wheeze though. Although it seems much more tame. I can only hear it sometimes when I'm actually coughing or wheezing. As opposed to all the time only stuck on one side of my chest and not moving! But I can actually breathe, and that's the important part.
Anyways, called work to give them an update. Hoping I'll be able to go back tomorrow. I'm sure I'm going to be really tired though. Last night I was super out of breathe, but I think that was mostly because all the asthma meds speed my heart up. Better so far with that today too.
Today I'm going to try and walk around a bit more, and maybe run an errand, to see how out of breathe I am and if I think it will work!
I'm so glad things are improving for you. I'm sure being more settled in a clean home helps us be more relaxed. I am signed off for another week and sleep deprived due to pred but I am slowly heading in the right direction. It's the first time I have been unwell since having a home nebuliser and it surprised me when it didn't work last week! A learning curve I guess.
Take care and don't run before you can walk!! xx
I wrote a reply to this thread yesterday - didn't even take that long but I got signed out while writing and lost it, grrr.
Anyway, I just wanted to say that I completely get where you're coming from re asking for help as I also hate it and hate having to say 'no really, I either can't or don't think I should be doing that so I'd appreciate it if you could help me'. v difficult especially when as you say, even the nicest people can sometimes not really 'get it' and think you're exaggerating, particularly when it's something that yes, you could technically do but will pay for afterwards, but I find it REALLY hard to defend myself in this sort of situation and start to feel like maybe they're right and I'm being a drama queen, even though when I was at my worst (not anymore) it would be a case of 'well I can do this but not if I want to do anything tomorrow'.
And I have also done the whole 'it's not asthma so you can't have inhalers' and it is indeed miserable. Now they're more 'with it', I really hope you can stop feeling like this so often and they get some ideas (are there specialist places you can go to if they don't get anywhere?). And I'm glad you sorted the laundry though bed-making can be exhausting when you're unwell. Still, clean sheets are lovely.
I will stop rambling on now - but also wanted to say hi (waves) to Jac - long time no see, though sorry to hear you're having a flare-up too and I hope you get over it soon.
Having a flare-up caused by a virus is somehow easier to accept than a general flare-up. I previously had several weeks of the best level of symptoms for the last 32 months. (Dec/Jan is my best time of year usually.) I even managed to reduce my Symbicort to 2 puffs twice a day for about 5 weeks. My GP has given me a separate pulmicort (budsonide) inhaler so that I can reduce my long-lasting reliever but not yet the steroid level. (When this blip is over now of course.) I am so excited to be possibly reducing my meds!!! I saw my GP today and also asked for a referral to see a physio for dysfunctional breathing, he felt this was an excellent idea!
I hope you are keeping well, I have been on reading lately but not so chatty lol.
Jac xx
PS Sorry to hijack your thread Bee xx
Sorry Bee, I'll try to be quick (this is where I miss the PM system!)
v glad to hear the general trend is up for you Jac, apart from the current issue - and like you say, at least you know why it's happening! I've also been having some good periods, more than ever before (though still a bit stuck on what to do when I'm not considered/I don't consider myself in need of pred but need to do something - so maybe asking for the separate steroid inhaler would be an idea for me too. Are they ok with you being on 3 puffs twice a day of (is it 400/12?) and also having the extra steroid? For some reason I haven't been given any options for this in-between stage.)
I do think the physio has helped me as dysfunctional breathing does not help asthma even if caused by it, so I hope your physio can help you too.
The pulmicort is for when I reduce the Symbicort 400/12 to 2 puffs twice a day, so that I maintain the steroid level. Having heard people on here mention it with other inhalers I came up with the idea to step down but as Feb is the start of the pollen season for me I don't want to reduce steroid also. When I decreased the Symbicort mid Dec, I also ended up using less ventolin, approx 3 times a week as I think the long-lasting reliever contributes to my acid reflux, a vicious cycle! xx
Hi Philomela,
No worries! It's always great to reconnect with old friends, and you didn't hyjack.
So drat! I was doing pretty well until I decided to tackle a pile of mail for 15 min. For some reason I still don't understand that this is a huge trigger for me. So I stopped right away when I realized, and am now doing a second neb. treatment in 2 hrs. Grrr.
I think it's because when they mail is outside it gets all exposed to pollen and mold. So it is an issue, but I start to feel as if I should live in a bubble!
I did call my pulmonologist for advice on how to spread out the breathing treatments though...as I realize I didn't really know how/when to do that, and also am still getting this crackling wheezing, so am unclear if I should wait until that goes away? Or if it's sort of like par for the course?
Anyways, I at least my supervisor's supervisor called (as my direct sup. is on a cruise!). And she was really nice about things. I'm out of sick time, but have taken to vacation. So she let me take that, and encouraged me not to rush things. So that was good.
About the increased inhaled steroids....I do that too. I used to be on advair, but it gave me more palpiations, but at that point I would take advair with alvesco, and then when I was in allergy season would take a higher dose of the advair with the alvesco. Now, since it was giving me palpitations, I take fluticasone. I have permission to take anywhere between 2-4 puffs twice a day, and I know I'm been pretty sick lately, but three puffs twice a day did work well during my allergy season. It's nice to have options I can try at home!
Bee
Ah no, how annoying! I hope you get some answers re the nebs. At least work are being understanding (though as I recall you work in a hospital so I'd have hoped so - still, from what I've read on here people who work for the NHS have often not had an easy time of it re work and sickness). I hope you don't have to use up too much vacation, but definitely take it slowly.
Advair is fluticasone+salmeterol, right - what we call Seretide I think? And what drug is Alvesco? We don't have that name over here so I have no idea what it is. I'm actually quite surprised I don't get more palpitations on all the Symbicort I take; I used to get loads but I guess they must have been more related to the asthma/breathing than the medication because now things have calmed down so has my heart, mostly. Or maybe I got used to the LABA, but certainly I don't seem to have the random high HR and palpitations nearly as much. I guess you have to be careful with that as you have heart issues as well.
Like Philomena I tried to post earlier on this thread but got logged out (what is that about anyway?!)
So just popping by to say i hope things continue to improve for you and you get the right treatment sorted out soon. Take care.
Rose xx
I've found that if you get timed out when you try to post a reply, it says access denied (or something similar), if you go back a page and click on quick reply, the post you thought you'd lost re-appears. So if you open a new tab and sign in to the forum again you can then close that tab and go back to the other and press post. Hope that makes some sense as I'm not sure it does.
Sorry to go off topic Bee, hope you're getting better
Yes I think advair is what you call seretide. Alvesco is a Swiss inhaler, (ciclesonide I think?) that is supposed to be targeted more specifically to the lungs without as many systemic side effects.
So...lets see. I didn't hear from my pulmonologist yesterday so kept doing the every 4 hour nebs. Quite sleep deprived! LOL. Called them today, and the secretary said it was her and him only...as everyone else was out sick!
Turns out there's this awful 10 day cold going around, and everyone is getting it. So he called me back this evening, saying that yes this is what he thinks I have. Its' quite bad. Told me to split up my nebs. Instead of doing levabuterol and ipatropium together every 4 hrs, to do levabuteral then ipatropium 2 hrs. later, then levabuterol 2 hrs. later etc. Then to do both together before bedtime...and YES I can sleep. Yipee!!
Then I do that all day tomorrow Wed. Then if I wake up on Thursday O.K., I will go to work. Not sure how to taper the pred. but figure I will worry about that when I can breathe at work.
Oh and recieved a call from my HR department rep. who was very kind, actually. Turns out weekend hrs. count towards time, even though I wasn't supposed to work, so I have to apply for short term disability. Which is kind of weird. BUT, the good part is I don't have to use all my vacation time, so when I am better, I will still have that available.
And yeah, I do have congenital heart condition and a pacemaker actually, so palpitations are par for the course, unfortunately. And I do a three week long holter every year, which is apparently coming tomorrow! LOL. I'm going to be a mess at work trying to use my neb. and call in my holter checks over the phone. I'm really not sure how that's going to work, but hey, maybe they will catch something for once with all the asthma meds speeding my heart up. Although I am NOT looking forward to explaining this to employee health.
Bee
Glad to hear you have a plan of action bee. I sympathise with the heart and lung meds messing each other up so annpying. I had possibly the most useless stupid annoying cons with cardio today (see my post in late nights etc.)
Anyway hope things continue to improve and the juggling work holter and nebs goes ok.
Rose xx
Ug, so sorry to hear your cons. was useless today Rose. I hate that, when they just don't have answers and you're stuck trying to deal with your life (and the symptoms). LOL. I think my pulmonologist has decided he can vent to me about his busy work schedule! I of course was like ""um I really don't know what to do as I've never missed this much work, but you know I need to be able to breathe??"" Conversation/Question?
Yeah, i think I will just show up at work with the holter and see how it goes. I did have a moment of panic though, as I do have a landline (i think), but I haven't used it ever probably. It's some plan I found where they only charge me if I use it that I got specifically if I needed a holter or to do a pacemaker check over the phone. But for some reason couldn't remember if it was still on? So luckily it's in service :). LOL.
Bee
Good news! Today I feel so much better. Actually well...well....knock on wood. It is like someone turned off the asthma switch. There is no longer gurgling in my chest, more like an occasional wheeze, but very mild.
So I'm off to work tomorrow. I'm also all wired up with heart monitor. Should be an interesting day! Wish me luck, and I'll let you know how things go.
Good night.
Bee
Wishing you luck with the holter and all of the logistics associated with it.
So glad to hear that asthma is giving you a break!
Good luck. Holter is just a general pain at getting away (i hate it cuz am allergic to all the sticky stuff on my chest) but i only do it for 24hrs a time?
Good luck
Rose xx
wow, great news! I sometimes get that too, that it's been a pain and then it's not. Usually, with a milder exarcerbation, just at the point where I've got in to see the doctor, so they wonder what I'm on about.
Good luck with work today and with the Holter. I've done them for 24 hrs and they've been a pain logistically, so 3 weeks, wow. I wouldn't have enough clothes for 3 weeks to cover the electrodes for a start! (I have about 2 items which work.)
Lol philomela tbh i never bother about covering the electrodes. Im already in a wheelie and covered in scars more or less vissibpe with a catheter sprouting from my neck. So i really dont reckon hooter gonna make much difference to my general appearance
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Frustrated by A&E
Advice on asthma as I have run out of options !
Need some advice !
