1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
Discuss the article on the Forums.

How to take meds safely

Discussion in 'General Treatment' started by Calathea, Apr 11, 2012.

  1. Calathea

    Calathea Darkness therapy

    Messages:
    1,080
    Likes:
    527
    Scotland
    It's a problem so many of us have had: picking up the wrong bottle, absent-mindedly taking meds twice, forgetting to take them at all, getting completely befuddled about which ones should be taken with food. So I thought we could do with a thread for discussing strategies for taking meds safely and getting the dose right. I'm in a bit of a rush, so I may well start this off and then add things later.

    My main strategies are:

    1) I keep a spreadsheet diary for symptoms and medication, including supplements. I check off every med/supplement I take every day, and I note down whenever my regime changes or I take something on a one-off basis (e.g. "Started Vit C 1000mg. Took 2 co-codamol/valium for headache.")

    2) I have seven containers for meds, each holding four compartments. You can get them in different sizes, and I've had to spend a long time on eBay sourcing some really large ones. One day a week I sit down with my support worker and we fill up the meds boxes for the week. A useful trick we've learned is to keep all the meds in one cardboard box, and then when we are filling up the meds boxes, we take all the bottles out, put them on the table, and put each one back into the overall box when it's been done. That way we are far less likely to forget one of the many bottles. This is only for things you take on a daily basis, it's no use for things you have to take on an as-needed basis. I get used to having one of these meds boxes around every day, and when I take the last dose for the day I put the empty box back in my bedside drawer and take out the next day's box, leaving it by my laptop.

    3) For my electrolyte drink, I have a different method. I have just been losing weight, and am continuing to log what I eat using dieting software (Fitday PC in my case, though it's probably not the best around). I have made up a "custom food" for the electrolyte drink, after putting all the ingredients into the system. Every time I have a dose, it gets marked down onto the diet diary, so that I can keep up with how many doses I've had per day.

    4) The hardest thing is meds taken on an as-needed basis. Sometimes I jot them down on the computer, using the Sticky Notes software. For instance, I was on co-codamol and buccastem after my recent surgery. The notes on the laptop would usually read something like, "Sun - Co-cod 11, 3, 7, 11.30. Bucc 11, 7", and then the next day I would delete it and write on top.

    5) Alternatively, I have sometimes used a single-day meds box which has an alarm built in. I used this when I was on co-codamol and tramadol for a month with calcific tendinitis, for instance. I believe it holds up to seven doses per day, and you can set an alarm for each one. You do have to remember to fill up the box again at bedtime for the next day. The other snag was that one day the alarm randomly started going off when the box was somewhere in the depths of my bedside cabinet. It took hours and hours of infuriating beeping before we worked out what it was, where it was, and managed to turn it off.

    6) I have been known to rewrite the name of a drug, along with its dosage and/or what it is for, on the box in large lettering, as I have trouble reading the prescription label and the pharmacy won't do large print. Sometimes I mess around with colour-coding as well, e.g. red for painkillers.
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,757
    Likes:
    3,332
    Sth Australia
    Thanks for that Calathea. You are so organised :)

    My boyfriend has done that on mine (but I still missed seeing that when I accidently ODed).

    I didnt know there was pill boxes with alarms on them, Im going to try to get one of those, it may help me to stay on track better with my meds. Most of the things I take thou are "when needed".

    I love the colour coding idea and have used colour coding before to help my head to distinguish things. I didnt think to use it for different kind of pills. (thou that wouldnt have helped stop the issue I had last night as it was the same med i took, but with a different dosage).

    I think I need to do something like that. I'll ask my boyfriend when he gets back from his cruise (3 weeks time, he left today) if he can help me set up a spreadsheet for meds.

    I have written then down on paper before to be ticked off when taken but then kept on loosing the paper I'd written on... computer would be much harder to loose :)

    I really need to pull myself together and start using the pill boxes I have, ***sighs*** I keep telling myself I will organise myself better but it never seems to happen and I just keep making mistakes.

    Im wondering how large the large pill box you are using is?.
    I got a large one from the shop some time ago I was using (when I was getting organised enough to fill it up) but all the things Im meant to be taking didnt fit into. Can you please tell me more about your large pill box?

    Ive also had an issue with pill boxes and loosing compartments of them .. Ive got 3 or 4 different ones here.. in which Ive lost a day or so compartments out of them.

    Good idea. The other day I had to do a list of my meds again and they were all on the cupboard in the kitchen and due to being unable to stand there to list them all.. I had to go and lug the whole lot back to my bedroom and bed, which took quite a few trips back and forth.

    Keeping them in a box I could pick up and carry to where needed, is a great idea and would of been MUCH easier.

    thanks
  3. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,756
    Likes:
    850
    US
  4. Calathea

    Calathea Darkness therapy

    Messages:
    1,080
    Likes:
    527
    Scotland
    Hey Tania,

    I'm not all that organised - I've learnt all of this the hard way! You will not believe how long it took for me to think of keeping all the current meds/supplements in a box. Before, they were in a drawer of my bedside chest, so that not only were the current ones all muddled up with the ones I wasn't actually taking and the spare painkillers, but every single week we had to bring in a tray, put the boxes on the tray, take the tray through to the living room, and then try to remember which ones we'd taken pills from. Now they live in a box near the dining table, it's so much easier.

    I don't use a weekly pillbox, I use seven daily ones. They don't fit together, though of course they're kept together, in the same bedside drawer. The weekly ones are far too small, they don't have enough space for even a basic dose of ME supplements. Right now I'm using the Pilbox Maxi (yes, just one L, it's French). It's not perfect, I'm not that keen on the way the lid slides on and off for the whole box, rather than being able to lift a lid for each compartment. But it's pretty much the biggest I've tried. If nothing else, the big round tablets of Vitamin D/calcium I have on prescription don't fit in much. I've had mine for years, they appear to have recoloured it amber in the meantime.

    It may help to keep a list of what you're taking and when, since these things tend to desert you when you're staring at a row of bottles, and especially if you're getting someone else to help.

    Another thing I forgot to warn people to watch out for is making sure you start at the right end of the daily pillbox. Starting with the bedtime end in the morning can be a bad idea if you take stuff to help you sleep.

    It does take a while to get used to doing it this way, but even with a fairly bad memory I always get into the routine sooner or later. I have support workers in each week, and they have printed off sheets to follow which tell them that we do the meds boxes on Tuesdays, so that keeps us from forgetting. If you don't have someone formal like that set up, try using reminder software on your phone or computer. I have Active Desktop Calendar, for instance, and I could set up a weekly alarm on that if I wanted.

    You can use colour coding for dosages as well if you want. I never really did that well with the colour coding, I didn't work out a good overall scheme for it, but in theory it's possible. At one point I was messing around with little coloured stickers to put on the medication boxes, e.g. two red teardrop shapes would represent medium strength co-codamol, but I never got anywhere with it. It might work for someone else, though.

    As SickOfSickness mentioned, there will also be apps and bits of software and websites you can use for tracking when you've taken your meds. Medhelp.org has quite a range of trackers, that might have something useful, although that's more for symptom tracking. I've been using my spreadsheet symptom diary for years, so I have it quite nifty by now despite being unable to use a spreadsheet in the normal way, and my partner is used to asking me, "Have you done your symptom diary?" before we go to bed.
  5. caledonia

    caledonia

    Messages:
    2,482
    Likes:
    1,104
    Cincinnati, OH, USA
    This page looks like a pretty good summary of what's out there. http://www.forgettingthepill.com/categories/pill-organizers
    There are also electronic pill organizers/dispensers that have an reminder alarm. But those cost more and the slots don't look big enough to hold large pills.

    I'm currently using the Weekly Four-a-Day Pill Organizer - Item 361. But as you say, the slots are too small to hold a bunch of large vitamins. Back when I was taking more pills, I made my own jumbo pill organizer. It consisted of four Jumbo 7 Day Pill Organizers - Item 316 mounted on a board.

    When I travel I put rubber bands around the doors to make sure they don't open.

    If I'm just going somewhere for a few hours and need one dose of pills, I wrap them up in some aluminum foil or plastic wrap and stick them in my pocket.

    On my computer I have a Word document (with date) that says what time of day to take which pills or liquid supplements. When things change, I update the sheet and put a new date on it (saving the old sheet in case I need to refer back to it). I keep a print out next to my pills, so I can refer to it when I load up for the week.

    My pills bottles are kept in a cardboard box inside of a storage ottoman next to the couch which is my center of operation. Any spares are kept in a kitchen cupboard.

    I also have another Word document which is a pill inventory sheet. This helps me re-order my pills. It has the name of the pill, the amount in the bottle and how many to order for a months supply, where to order from and the cost. I try to minimize the number of places I get supplements from to keep things simple.

    When I start running low on something, that is the trigger to check my whole supply and reorder for a month. By using the weekly pill box you can see a week ahead when you're getting low on something, giving you time to order by mail. I print one of my inventory sheets out and open each bottle, estimate how many are left and mark it on my inventory sheet. That way I know which ones to order.

    Then I have, also on the computer, a journal, which is a calendar document in Word. This is where I note any medication/supplement changes and any startup, discontinuation or side effects. Each journal file covers a whole month at a glance, so it's saved in a file called something like Journal March 2012.doc. Each file goes into a folder marked by the year.

    Spreadsheets are too hard for me to read, so I don't use them.
    SickOfSickness and Calathea like this.
  6. Calathea

    Calathea Darkness therapy

    Messages:
    1,080
    Likes:
    527
    Scotland
    Oh yes, I'd forgotten another part of the weekly meds boxes ritual: the support worker checks for any meds or supplements which are about to run out, and makes sure that before she leaves, I have at least jotted down on the laptop if I need to order any more. Preferably I order more on the spot, before I forget.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    5,347
    Likes:
    3,684
    Albuquerque
    I am not as organized as some of you guys, but here is what I do: I keep the meds and supplements that I only take once a day in separate places. Like bedtime ones on the bedside table, the ones first thing in the a.m. near the stuff I use when I first get up. Then when I open a bottle and take out a pill, I move it to a different place (like another row of bottles). This is a bit primitive compared to others, but basically works.

    The ones I take more than once a day, I also move to "another row" when I open the bottle and take one out. These are the ones I take with meals. I also don't just pop them in my mouth one by one, but put them in another container so I can check them to make sure I haven't got two of the same med.

    For sure, we do need some way to keep track of meds and supps as most of us forget whether we have taken one now and then.

    Thanks for starting this thread Calathea.

    Sushi
    taniaaust1 and Calathea like this.
  8. SOC

    SOC Back to work (easy, part-time work)

    Messages:
    4,405
    Likes:
    4,292
    USA
    I started being organized about my meds and supplements when I was trying to keep up with them for both daughter and I while we were both brain-fogged.

    I use exactly the type of pill case Caledonia mentioned above -- the Item 361 on the link she gave. I keep all the bottles of meds in a plastic bin in the pantry. Once a week I get my pill case and the bin of bottles and sit at the table. I always put the bin on my left and the pill case in front of me with all the slots open. I always place the case with the morning slots to the left. Routine is your savior with cognitive problems.

    For each bottle I:
    -read the dosage (an extra check)
    -put the right amount in the right section of the pill case
    -check to see if I need to reorder
    -place the "done" bottle to my right (unless it needs reordering in which case I put it in front of me on the other side of the pill case)

    When I've got the case filled, I
    -put all the "done" bottles back in the plastic bin
    -make a list of things to reorder from the bottles in front of me
    -put them back in the bin
    -put the bin back in the closet

    This way I get an automatic check that I've gotten everything, haven't doubled up anything, and know what to reorder. Since the bottles are in a bin in the pantry, I don't have immediate, "thoughtless" access to more than I'm supposed to take. If have to go to the pantry to get a pill, I know something's not right, which makes me stop and think.

    So far I've managed to get around the relative smallness of the slots in the pill case by distributing supplements that can be taken any time amvong the 4 daily sections. My morning and bedtime slots are usually crowded with stuff I have to take then, so I take things like most vitamins at lunch or dinner time. So far it has worked.

    I'm supposed to take my thyroid med very first thing in the morning as I get out of bed. For that I have a different routine. That one bottle sits on my beside table next to my glasses. I put on my glasses, read the bottle (always a good habit), take the dose, and put the bottle down out of easy reach across the bedside table. At bedtime, when I take off my glasses, I move the bottle back to it's "morning" position. It didn't take long to develop the habit, and I can tell whether I've taken it based on where it is sitting on my night table.

    Oh yeah, when I was really brain-fogged, I kept a list of what I was supposed to be taking in the plastic bin with the pill bottles.

    Routines/habits are really important when cognition is not up to snuff. The trick is to get a safe routine established so that when something happens that's out of routine, it's more likely to send up a mental warning flag.

    I don't take much "as needed" stuff for just the reason people have mentioned -- it's hard to keep track of it. For example if I'm having pain from a flair, I just put the analgesics in my pill case at the same time(s) of day for the whole week and don't sweat the details.
    Little Bluestem and Calathea like this.
  9. Patrick*

    Patrick* Formerly PWCalvin

    Messages:
    217
    Likes:
    157
    California
    This is a good topic, Calathea.

    I use a system of colored stickers that I place on the lids of each bottle to remember the times of day that I'm supposed to take each supplement, as explained in this blog post. blog post. For instance, if it's morning, I open up the the box containing my meds and take one of everything with a green sticker on the lid. If there's two green stickers, I take two of those, etc... Blue is for mid-day and red for evening.

    The few supps that I take right before bed, I simply keep on my nightstand.
    Calathea likes this.
  10. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,756
    Likes:
    850
    US
    I'm impressed that all of you have a system. I have a terrible time being organized or consistent. Hard to follow lists or procedures. I sometimes manage for a week or two :(
  11. SOC

    SOC Back to work (easy, part-time work)

    Messages:
    4,405
    Likes:
    4,292
    USA
    I know what you mean. And the worse a bad patch or full-blown crash, the harder it is to stay organized. For me, it just got to the point where it was less difficult to be organized once a week, even when I have to force myself to do it, than it is to try to be sufficiently organized every day to take my meds. Sigh... this from the woman who actually Dewey-decimal coded her personal library. Those were the days, my friend, we thought they'd never end... (Where's the singing smilie? I'm always wishing for smilies we don't have.)
  12. Wally

    Wally Senior Member

    Messages:
    287
    Likes:
    493
    I have a similar system to the ones previously mentioned.

    For example, I have a weekly Excel spreadsheet for daily medications, a Word document with all current medications listed, a separate basket where all medications are stored, daily pill organizers with four compartments (with markings for breakfast, lunch, supper and bedtime and the day of the week), and a wonderful partner who designed the spreadsheet, fills the pill boxes, picks up the medications and is always checking to see that the pills in the boxes have actually been taken. I also use the alarm function on my mobile phone as a reminder throughout the day to take the pills in the amount and schedule that was prescribed.

    I realize this sounds like a pretty good set up and I am very grateful for the help I receive. However, I still have not figured out a solution for when all the steps outlined above have been taken and I still find myself distracted in the time it takes to put the pills in my hand and move them to my mouth. What a shock when I have found those sneaky little pills resting on the counter next to a full glass of water. :confused: :eek:

    This illness really gives our brain cells a run for their money. But perhaps the number of symptoms we are dealing with on any given day, as well as the number of drugs prescribed to try to control these symptoms, is enough to set anyone up for some degree of medication compilation failure.

    :hug::hug::hug::hug::hug::hug::hug::hug:
    SickOfSickness likes this.
  13. Calathea

    Calathea Darkness therapy

    Messages:
    1,080
    Likes:
    527
    Scotland
    Another thing I forgot to mention is that in some countries at least, some pharmacies will make up little compartmentalised thingies for you with your meds divided up into their daily doses. They're disposable and involve piecing a bit of foil, which I for one find tricky. The main snag is that this is only for prescription meds taken on a daily basis, and is no use at all if you want to include supplements, or if you are taking meds on an as-needed basis.

    While we're going through problems with our neat little systems, here are a couple more I have. I'm using boxes with four compartments per day. Breakfast, lunch, dinner, bedtime. This means that I take almost everything with a meal. If I wanted to take some meds with a meal and some in between meals, I would need to buy a whole new set of boxes. It would probably be easier in one way, because I could just buy seven of the boxes which are intended for one-compartment-a-week use, each containing seven compartments. That way, Monday would be breakfast, Tuesday would be mid-morning, Wednesday would be lunch and so forth.

    The other problem I find is that sometimes I sleep in late, and my lunch isn't much later than my breakfast, as I like to get back on schedule for mealtimes relatively quickly (as everyone has been saying in this thread, routines are great things). This can mean that I end up taking my doses only an hour or two apart. With some prescribed meds, this is really not a good idea. I had a very bad reaction to a new anti-nausea med the other month, metochlopramide, and we think it was worse because I ended up taking two doses pretty much back to back. I think that I might have even taken two doses at the same time, due to forgetting at one meal. This is not to be recommended.

    It's good to see that I'm not the only one who finds all of this such a challenge! I have never been able to get doctors or my local pharmacy to understand why it's so difficult, and always get told, "But can't you simply..." Idiotic suggestions from others have included "but can't you just get someone else to give you the medication" - hah, like everyone with ME has 24 hour care!
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,757
    Likes:
    3,332
    Sth Australia
    I have that same problem.. it only takes a split second of distraction and my pills end up anywhere. I often find them on the floor of various rooms in the house and wonder how on earth they got there. (I must sometimes forget Ive got them in my hand to take and then drop them.

    This is a big concern of mine as I have a 1yr old granddaughter who visits at times and Ive twice found pills on the floor after she's been here, which I must of dropped. Thank God she didnt put them in her mouth). It scares me that the inability to handle my own pills well not only affects me but could end up affecting my grandchild.

    Im terrible with lists too. I seem to usually miss some things when Im trying to follow a list (or end up crossing the wrong things off the list when I go to cross something else off). I mess up my shopping list up nearly every single week and end up home without things. Lists and me just dont seem to work well.
    ......

    I do keep my night meds by the bed, others on a cupboard, I have also a med gathering happening in my fridge and of cause those meds have to stay in there..

    Someone here mentioned a spot idea.. one spot on a bottle for every pill one needs to take from it and different coloured spots for morning/afternoon/night. Thanks for that idea.. that is something which could help me.
  15. SOC

    SOC Back to work (easy, part-time work)

    Messages:
    4,405
    Likes:
    4,292
    USA
    That would scare the wits out of me. If I were in your situation, I would seriously consider keeping all your meds/supps in one place, only take them there, and close that room off when your grandchild is visiting. That may not be so easy with meds that have to be refrigerated.

    I have a friend, though, who had 3 children under 5 yo. She finally just put a baby gate across the door to the kitchen and didn't let the kids in there unless they were strapped into a high chair or booster seat. She kept all her cleaning products, meds, and other particularly dangerous items in there.

    If you have a 1 yo grandchild who visits and have found your meds on the floor, you need to take positive action. You do not want to be the cause of accidental poisoning of your grandchild. Knowing you had no intention of her getting at your meds is not going to make you feel better if anything happens to her.
    Calathea likes this.
  16. Sparrow

    Sparrow Senior Member

    Messages:
    660
    Likes:
    746
    Canada
    I keep a binder nearby with a section for various symptom types (because when my doctor asks me when a particular something began, otherwise there's no chance of my being able to remember. Same if I'm trying to figure out if it was caused by something else I had done), and it also has a section for supplement changes. Very similar to the spreadsheet you mentioned - When things change, new supplements begin, or if I take a "once off" of something on a particular day. Date, supplement, and if I notice any distinct effects, sometimes I'll jot that down too (side effects, clear benefits, etc.). I used to have it on computer, but actually found it much more difficult to have to turn it on every time I needed to jot something down. And if I don't write it down right away, it's pretty much gone. ;)

    I use two weekly pill containers per day, colour coded for daytime or evening pills so it's harder to mix them up. Each slot is a particular time of day, so I can work my way through the containers with meals and then between meals sections (for meds that need food or have to be on an empty stomach) - i.e. basically Monday is first thing in the morning, then Tuesday is breakfast, Wednesday late morning, Thursday is lunch, and so on. I go through the container for daytime, and then another for evening. The next day I get a two new full containers. My husband fills them all once a week.

    My life pretty much revolves around the pill containers now, so I don't forget them. Not that I'm obsessive about them, but just that over time that's sort of become the framework of all my scheduling. The random stuff, or things that don't go in the containers, those I have an awful time remember to take until they get to be a daily routine. Lots and lots of notes to myself that I prop up in front of me and then forget to read. ;)

    I do also have a spreadsheet with the different medications and their totals of different vitamins, etc. and then the master total at the top, so that I can make changes easily and make sure I'm still hitting the amounts I want to, not going over on anything, etc. Required a lot of inputting all the data for each vitamin, but now it's a life saver. Wish we'd been able to put that together sooner.
    Calathea likes this.
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,757
    Likes:
    3,332
    Sth Australia
    I stuffed up my meds again the other day.

    I have selenium drops to which Im meant to take only 6.. I started dropping them into my mouth counting and went into some kind of autopiliot while counting and just kept on counting and counting.. not realising what I was doing, forgetting really what I was doing as all my attention was on just counting.

    I didnt realise what I was doing until after I'd taken 10 due to my brain had like blacked out (except for knowing I was counting but it lost the reason of why I was counting drops) Fortunately I realised at that point as possibly I could of kept on doing it for a lot longer before I realised :(

    (I used to go into this same kind of auto piliot state when I was still driving.. drive past a road Im meant to turn on and keep driving and driving.. only partly aware of what Im doing. That is what happened when I was doing my drops. Like a brain black out where you just keep continuing in an action without real awareness).

    **sighs** I really dont know what to do about the issues i have with taking meds esp when I go and do things like that.
  18. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,756
    Likes:
    850
    US
    For your drops, count down instead of up. 6 to 1... and when you hit zero you realize you don't give a drop for zero.

    When I am taking the pills like I should, I feel like my day revolves around them too, I don't like it. If I don't spend some energy and obsess over them it won't get done properly :(

    That is what my organized non-ME friend did.

    I found you can buy weekly pill organizers at Dollar Tree cheap. They are a 2 pack for $1.

    I sang along anyway. Singing smilie would be cute.
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,757
    Likes:
    3,332
    Sth Australia
    What a great idea, that may work :) .. I'll start doing that, counting my drops backwards.
  20. Valentijn

    Valentijn Activity Level: 3

    Messages:
    4,781
    Likes:
    5,107
    Amersfoort, Netherlands
    I'm up to 32 pills per day, now that my Naturopath had me start a few more things. I need to take 2 or 3 without food, three times per day, 1 before bed, some at any time, and the rest with breakfast, lunch, and dinner. So I wanted a pillbox with 7 compartments per day, whereas most daily or weekly boxes do a max of 4.

    Instead of trying to hunt down something in the Netherlands that would work for me, I went to the hardware store and got the smallest box they had for organizing screws and such. It's got 28 compartments, which is perfect for 4 days worth of pills with 7 sections for each day. And everything fits!

    It's not all lined up day by day or chronologically, but I used our label maker to label each compartment. I also used a permanent marker on the top edges of the compartments to outline the separation between each day. Ideally I'd liked get a better color coding on the labels, so I can easily tell one day from the next.

    I also have a list printed out of which pills I take at which times per day, and keep in it the cupboard with my supplements so I know what goes where.

    IMG_4182.JPG
    helen1 and taniaaust1 like this.

See more popular forum discussions.

Share This Page