I'm finding myself in a bit of a catch-22 : when I am really having trouble with my asthma I tend to be very tired and sleepy and have trouble dragging myself out of bed to take medicines at specific times. Sometimes this also happens when I crash with exhaustion after a good day where I've been able to go out and get a few things done.
Obviously this is a problem because this is the point where I can least afford a delayed or missed dose.
I'm on basically everything and its all a bit complicated – there's a lot more to this than just popping pills:
[*]AM & PM : seretide with a pre-treatment of ventolin with the nebulizer in hopes of getting more ICS into where it belongs.
AM: Lorstein, Prednisone (with food – which means I need to make breakfast first) , nasal spray
PM: Singular
PRN: Ventolin either via neb or inhaler.
Last night, my husband agreed to nag me so I could take my evening dose of seretide, which is huge because I'm very hard to wake up and he doesn't enjoy pestering.
I'm wondering if anyone has some practical solutions for this that have worked for them.
hmmmm...it's a bit tricky but i know exactly what you mean, i think unfortunately a lot of it is just down to the motivation to say to yourself 'this is something i HAVE to do, i can sleep in a bit' which is obviously much easier said than done. i assume you have all your nebs and inhalers and pills set up next to your bed, meaning that you can be as close to sleep as possible but still doing them. Also if you have a kitchen timer there you can snooze during the neb and then just wake up for a couple of puffs of inhalers and then back to sleep (also have a glass/bottle of water so you can rinse your mouth out)
with the prednisilone i am occasionally a bit naughty and just do it without food (not reccomending this though) but when i'm feeling particularly bad i just keep a box of cereal bars or fruit or whatever next to my bed, then i can wake up, eat something easy and take my pred without actually having to move.
it might also to help to have your meds all organised in advance (pill boxes or whatever) and nebs laid out ready so that you dont actually have to think when you take them, you can just do it on automatic (and if you have alarms set to go off at specific times then you dont even have to remember - you just have to wake up when the alarms tell you and do it, make a rule where you can snooze as many times as you like but never turn it off, eventually you'll get bored and just do it)
and you could always agree with your hubby that he helps you out on certain days of the week to give you a break when you are feeling really rubbish? but i guess it depends how much he hates doing it lol!
i found these and it made me laugh (pretty sure its ok to post, sooo sorry if not!) tickld.com/t/37146 - not sure i'd want to use them though!!!
I know the feeling.. but have to accept that it isnt optional. So, I bought myself a dosset box, which saves me having to fiddle about four times a day - I dish them all up into the box a week in advance. I take drugs at 8am, 10am, 2pm, 6pm, 8pm and 10pm. My hubby wakes me at 8am with my morning ones as this is the one I struggle with - and the rest I sort myself.
10pm: inhalers: salbutamol, fostair, ciclesonide and tiotropium (respimat)
Add into this 4-6hrly nebs when things deteriorate, plus having to use my acapella and do physio and my days are quite busy...
its a pain in the arse. Im on so many oral tablets, I have to spread them throughout the day as I physically cant swallow them all at once (the ones which arent twice daily). But thats the way it is, I need to take them and just have to get on with it The dosset box has helped a lot.
I have a weekly box system too... works fine for me.. though I have been pill popping for well over 20 plus years.
Pred - yes I sometimes chuck it down before breakfast or something to eat if I have woken up late, It all goes down with the Uniphylline which should be 12 hrly. I then usually have breakfast or at least a crunchy bar.
When I have been unwell I have missed breakfast but at least had a drink. I do take Omeprazole as well as standard so that will lessen the effects of pred on empty stomach
PM - 8pm tablets then 9 pm ish....
Regular inhalers twice a day and nebs 4hrly ish or when needed....
Kate
It's really hard to get up and take meds when ill, but it just has to be done. If I'm feeling rubbish then I just make myself have some breakfast and take meds and then can go back to sleep/rest. Sometimes I don't leave the sofa for anything but going to the toilet, so I just stay there surrounded by meds, snacks and a drink (with my laptop for company when I feel I'm up to it). I have a reminder on my phone for when i need to take meds. I also get other half to go shopping so that there's something in the house or next to bed/sofa which makes an easy breakfast, like fruit or yoghurts or fruit loaf and a glass of water/squash too. Other half doesn't like having to tell me to take meds either, but he just accepts/understands that he has to do it as i need them.
If you look on the Disabled Living Foundation website they have different styles of med pots, some with alarms.
Tis difficult at times and agree with the points so far. Personally, I have some nifty bright weekly pill boxes which are split daily into 3 or 4. I can take each day's lot with me when out and about or keep by the sofa/bedside etc. Also, use a small shot glass as a meds pot when taking esp the morning's larger batch. I tend to organise them fortnightly. I was not keen at first as it does feel like a little old ladies need but it is so much quicker and easier.
Also, if you can't manage food, a snack (or milk if you can have it) will help. Definitely would recommend apps, setting reminders on your phone, medicaton organisers with alarms - whatever works for you.
P.S. Soph, links to illustrate a point are ok, commercial advertising is not. That rug alarm clock and others are rather unusual!
Thank-you so much for your many ideas and the “sometimes you just gotta” pep-talk. It does help to have a few more voices rattling around in my head. Also
* Soph - thank-you for the good laugh over the various clocks.
* Lynda (Nursefurby) - clearly I am not taking ""everything"" - you have me beat by a long mile.
* TJ - yes a pill box does feel ""little old lady""ish. Now if they made something like a Dr. Who or Monty Pythonesque themed pill box for us young 'uns...
I do think I understand that one just ""has to"", but even the best intentions and will power can only go so far. Anything practical that shortens the distance from ""gotta"" to ""done"" makes ""done"" all the more likely.
At present I'm only taking three types of pills (Lortadine, prednisolone in the AM, Singular in the PM) so keeping track of pills is not the main problem. The big challenge for me is the overall choreography of the medication dance. Many of my meds aren't pills at all (nasal spray, neb + CSI) or require non-pill/non-med taking actions like accompanying them with food, checking peak flow before and after (nebs/inhaler). The fewer the steps, the more likely things are to get done.
In reading through the suggestions, I'm realizing that there are several ways I can simplify this process.
Soph – you give me too much credit – as I read your reply I realized that I could do a lot more to organize all the medicines and paraphanalia. So I took a small table near my bed and turned it into the apothecary/work station. I also added a small sack for all of the cast offs from medicines, blister packs, those little distilled water bottles etc so I don't have to go hunting for the waste basket.
With everything in one place, at least I won't be hunting around trying to remember where I last put that nasal spray or the pen that goes with the medication/symptom/peakflow log. Of course the next challenge is keeping it organized...
Soph, Lou – the idea of putting things that I need directly bedside is a good one (pills, glass of water). At least two of my medications (nasal spray, lortadine) can be taken directly when I wake up in the AM (not generally a problem for me – natural early riser). If everything is set to go before bedtime, then its more likely to happen.
All – pred & food – I think I have made this too complicated. I thought I needed a full meal and not just something in my stomach. I'm not usually a snacker and my husband has a tendency to gain weight because of snacking so we don't usually keep much ready-made food in the house. But I think the idea of some yogurt cups or breakfast bars, or even a slice of bread, cheese, a piece of fruit or some pre-cut veggie sticks might suffice? That would be easier than making a full breakfast.
Lou – setting the phone to go off as a reminder is a good idea. I usually keep the phone bedside anyway. When I do the neb + seretide thing, if I'm not wanting to curl up and sleep, then I get bored and play on the laptop. Then when the neb is done, I've gotten so absorbed I forget about the seretide. But if I set the phone so it goes off and annoys me when the neb is done, that might solve the problem.
I think setting the alarm on days I come home and crash might also be a good idea. If I set the alarm before I crash and I end up sleeping through the evening, I at least have something more than “gotta do it” to remind me and drag me out of bed for the evening seretide and singular.
Pill box – the pill side is still simple so I don't think I need a full weekly pill thing, but a container for the daily pills would probably be a good idea. I keep a medication log so that helps me keep track of what I need to take and have taken so far, but if I'm being scatter brained I don't always write it down immediately, so having a cup prefilled with the day's pills acts as a backup system to keep track of what was or wasn't taken.
Since I'm not a little old lady, I think next time I'm out I'll go into the novelty shop and look for something amusing to hold those daily pills.
The one remaining issue is the ventolin PRN – when i'm feeling really lousy my natural response is just to be very still and breathe slowly and steadily. Then I don't reach for the ventolin because I feel like things are “under control”. However, when I'm in the “be still and breathe” mode, I'm using those accessory muscles (abs, back muscles) a lot.
I think this may be one of the things where I've just really got to trust the more analytical part of my brain that is saying “gotta and here's why”. Also, I think having organized my little bedside 'work station' will help the extra bit from 'gotta' to 'done'.
Wednesday's little spill that upped the predisone back to 40 was largely due to my abs and ribs being tired and sore from all of that active breathing. Then when breathing became a bit difficult and I was concentrating on my errand instead of breathing, it was harder for me to get it back under control.
Anything I can do to spare the accessory muscles (i.e. more frequent use of ventolin) helps, I think, in coping with a sudden increase in breathing difficulty and makes predisone upping incidents less likely.
Ok, sun is out so off to the shops for some errands before it turns grody again.
Oooh dont you just love the pill popping...my recent tally is 66 a day taken at at least 6 points.
Just wanted to say Ive decorated my peake flow pill box spacer etc. with some nice funky stickers wich i feel have improved the granny problem
It does seek so stupid that when one is ill and everything takes so much time and energy so much is spent on meds.
Beth i also have a pill box and designated pharmacy table.
Rose xx
66!?! i feel hard done by on 18!! And yeah - i hate the old lady-ness of pill boxes but it's better than spending half an hour sorting through meds and trying to remember how many preds i'm meant to be taking (different people increasing/decreasing my dose and at different reducing speeds makes it an absolute nightmare to keep track) old film canisters are pretty good and dont 'look' old lady ish, and are good if you sleep somewhere different for just one night. not that many people use film anymore lol! assuming there are no kids in the house you could just put the morning ones in a shot glass on your drug table
i also had a thought, more of an attitude thing but something that i have started doing. it helps to remember that some is better than nothing. for example, you are supposed to do peak flows before and after neds etc. but if having to do peak flows is going to stop you doing it all together then its better to just do the nebs. in the same way, i often get criticised for my inhaler technique, not because i dont know how to do it but simply becuase when im tired/lungs ache i dont want to take a slow deep breath and hold it, so i just know that if having to do it properly is going to stop me doing it all together, i just do the best i am able to at that particular moment!!! not great if it happens everyday, but for a one off its not too bad!
66... good grief, I was feeling hard done by having to take 28! Bless you Rose.
Soph re inhaler technique, do you use an aerochamber? Just curious because both the specialist respiratory nurse at the local hospital, and the team at Papworth, said that if you use a spacer you just do four normal breaths per puff through the spacer - no breath holding.. much easier. Nigh on impossible to breath hold when lungs are bad eh x
Lynda
I have a friend who takes 100+ tablets a day!!! Yes she has lots wrong with her!
I hope things get easier for you then Beth with these little changes. Morning pred is deffo the hardest for me, especially after a hard night (and I've only just got to sleep), my other meds are a bit easier as don't need food, maybe only some water or correct timing.
Think I might get a few funky stickers, so thanks for that idea.
66 Rose, my eyes did pop out my head a little. Last week i was on 30 a day and i thought that was bad enough. Down to 10 a day now and reducing again in a couple days
Ooops sorry if that scared anyone. Obviously not all for lungs. I take 4 for making me piss and 5 for stopping ke piss so i reckon i could knock nine off easy...lol!
LOL!! I love your reasoning
Though it was quite good reasoning actually. I did try saying this to them in spinal rehab: ""isnt it a bit pointless giving me meds to not ppiss when cardio give me lasix etc.?""
- ""yes well we take that into account...""
just shows that after a certain point these things really get ridiculous me thinks
Beth,
Thanks for posting this. I've been having the same problem! I have a few health conditions, so take about 12 pills a day (I think). But have found being on pred. for the last three months, then now finally off, I keep dosing off in the evening and have the worst time trying to do this complicated inhaler/neb/nose spray/nose antibiotic, pill taking bit while I'm struggling to stay awake! And my concentration is shot.
I had posted a while back about having issues with taking all my meds throughout the day, and having them all organized as I ran out the door in the morning. I did organize an area near the door for my purse, and other items, so that it is easier to grab everything as I leave. Then I got this nice new purse, that is light, and goes crossways over one shoulder, that fits everything. Which is helpful as I also have shoulder arthritis.
But with the night meds, I keep meaning to do this, and thanks for reminding me. I'm going to set my cell phone alarm to remind me to take my inhalers at 8 p.m. and my pills at 9 p.m. BEFORE I start falling asleep.
I'm in the U.S., but on the not being an old lady I got myself one each of these:
I just got the pill wallet and love it! And the pill fold, is really nice when you're traveling, as it fits about 6 pill bottles and looks like a cosmetic bag. I actually use it at home for those pills that I don't take every day, but when I'm tired of having pill bottles hanging around in more than one area of my apartment!
Bee
So far these 'little changes' are paying off and making all of this run much more smoothly.
It's only a few days into this, but I wanted to say thank-you.
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The dosset box has helped a lot.
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