Tip #92 Bibs and Bobs; Tuburlosis

     Tuburlosis? It's pronounced Toob-yure-low-sis. What is it?  It is the word that my hubby Brad made up to describe having too many tubes and cords coming out of oneself, attached to oneself, or surrounding oneself. Well, actually, it's generally used to define a combination of the above, and is specific to said tubes being tangled (inconveniently I might add!). What did Shakespeare say? Oh what a tangled web we weave, when first we practice to, er, um, rely on medical equipment to sustain us? Okay, so I'm no Shakespeare, but who knows - maybe someday people will use the word tuburlosis as often as they quote one of his least known passages. A girl can dream...
     What made Brad coin the phrase? There are two reasons; a) because Brad is fun and it makes us laugh, and b) because it quickly conveys the need to stop and regroup before tubes are pulled out of me accidentally. It is a word that conveys an urgency to fix that issue quickly - which is especially important when I start to stand up. "Ttuburlosis" just seems more fitting than "Oops, careful - hold on a second, no, oh no  -  oh bring the computer back to my lap please, it's caught on my IV tubing, which, incidentally, seems to be tangled in the feed line." Way more fitting!
     We've had some tuburlosis near misses, which doesn't seem all that odd when on a typical day you'll find IV lines, a feeding tube and it's lines, the iPhone (and the headphones and charging cord that go with it), and the computer - on me, attached to me or in bed with me. And those are just the basics! At different times in the day we add the blood pressure monitor, and I've had a heart monitor (which delightfully had 3 cords for lickety-split tangling), the camera and/or card reader, and the cord that has a fancy name that I can't remember at the moment that makes the TV become my computer monitor. Tuburlosis indeed!
     Now, if we could only come up with a word for the daily accessories that I lose in the "magic covers (magic because they are really good at making things disappear, even if I've just used said items)." When the phone rings, or the iPhone alarms, for example, I end up searching said magic covers for the item I think is demanding attention. But that is harder than it looks! Have you ever noticed just how many technical items are small and black? The iPhone, the TV remote, the portable phone, the heart monitor (which was only for a while but was the bane of my universe), and the walkie-talkie (to reach Brad in the barn). And if that weren't enough, have you ever noticed just how many small black non-technical items we use day to day? At first glance the black pencil case, black glasses case, and black blood sugar testing kit look a lot like the technical items. Crazy I tell you!
     With all the colours in the world, and all the materials the earth provides, does it ever strike you as odd that as a society we want all of our stuff to look the same? The only time this mistaken-identity scenario pays off is when I accidentally find an item one of the other items is prompting me to use. So, when the iPhone alarms to tell me it's time to take my blood sugar, as long as I make a mental connection to what the alarm was prompting me for, it's just as well that I accidentally pick up the blood sugar kit in it's stead!
     My mother-in-law makes me laugh a lot - she's quite funny. She tells me that whenever she calls me from her house, she pictures the goings-on in this house in her mind, and it gives her a good giggle. She's been here enough times to accurately picture me digging through the covers, madly tossing small black items out of my way, whilst I frantically try to disentangle myself from the state of tuburlosis. And if that isn't silly enough, I find that the object in question (the phone in this instance) is usually slightly out of reach somewhere in the magic covers because I tossed it out of the way the last time I was madly searching said covers for something else small and black. It really is fairly comical to see, and usually to experience (usually, because sometimes it drives me nuts!).
    The solution? Unless you can somehow either:

• Cut down on what is in you or on you instantly (you'd have to recover miraculously with a snap of the fingers to make that happen), or
• Cut down on what is around you (less devices), or 
• Colour code all of your small black items, or maybe 
• Invent a device that does all of the functions you need it to? Improbable if not impossible, or 
• Put a spell on the covers to make them less magical

then I'm afraid you're out of luck... you too may be stuck with a state of tuburlosis and, well, lets call it small-black-item-itis.
     So, in the absence of changing your circumstances, I suggest you change your outlook; declare a diagnosis of tuburlosis, small-black-item-itis, or some other word you invent to describe that which is the bane of your universe. Then, try to sit back, giggle at yourself, and encourage others to join in. To us, it's a much better state of being!

Happy inventing!


  

Tip #15 Weighted Wonders; IKEA is good for the soul?

     Yep, I said it and I meant it... IKEA is good for the soul - or at least for peace of mind! I can't tell you how many times I've spoken to people recovering at home and their caregivers who begin to feel like they're going mad because of the chaos around them. I recognize that some people have no problem living in chaos, but for the rest of the world this can be very frustrating. You usually don't incorporate furnishing your living-room with a hospital bed, nor design your floor plan to accommodate large amounts of medical supplies in the main areas. It can especially be emotional and/or frustrating for people because:

• Having the house that way is a constant reminder that you or a loved one are ill.
• Other people expect you (especially if you are a caregiver) to have it all under control because you're at home all day. BUT that doesn't take into account the fatigue and exhaustion from just the stress of being ill (or worrying about a loved one who is ill). Nor does it take into account that you now seem to have a new full time job; you're either focused on caregiving or on getting better, or both.
• Even if you have kind friends and/or multiple caregivers: 

• Most of you won't really want to ask others to do some of the things that you would like done, because you don't want to put them out OR
• Maybe you don't have the luxury of having those people (above) to help out OR
• You can't afford to hire a cleaner in their stead AND,
• No matter who is doing the cleaning, no one is going to do everything the way that you would do it. So, pants shrink, whites turn pink, things are put away where you'd never look to find them, the vacuum cleaner is parked in the middle of the living room and you can't move it out of the way, etc.

Here is the most important thing I can say about all of that; it likely drives you crazy for one reason.

1. It represents the lack of control you have in your life right now. 
2. (I know I said one, but wait for it...)You live in that area all of the time (all day, all night, or both), so the dust on the window is going to drive you crazy because you're looking at it for weeks or months. But, here again I say the number one reason above is applicable; it's really driving you crazy because illness/trauma has made you (understandably) feel that life or things in life are out of control - and that's a really hard thing!

     So, what to do about all of it? 

• This is where the IKEA comes in: if possible, reorganize! Einstein defined insanity as doing the same thing over and over and expecting a different outcome (paraphrased here). Things are going to keep getting messier and messier if you don't make a concerted effort to adapt your environment to your new status. This can make a VERY big difference as far as I am concerned! I get that this isn't always possible financially (although there are some smaller plastic units in the pics below that were non-IKEA, $30, and did the job for a long time). And the manpower can be difficult too - since you won't be able to do it yourself. If you can't do this, you may still be able to work on the following items (which I suggest you consider even if you can do the reorganizing!).
• Allow yourself to be unapologetic to others for doing whatever it is you have to do to get well/help a loved one who is ill (which includes carefully choosing where your energy is expended). For instance:
• Foo-ee to those who take issue with your messy house. They're not living your life. You have nothing to be apologetic about
• You don't need to explain your financial status to anyone. Illness and recovery add extra financial strain. That's just the way it is usually.
• If 5 things are driving you crazy, try to do 1, or part of one yourself. Choose carefully (maybe dusting the window might be possible, but don't try to clean the bathtub). Why? This helps you feel like you have a bit more control - you've chosen something. And, while this may mean a bit more pain for example, sometimes that's worth it for quality of life (for which peace of mind is a criteria!).
• Change your expectations. You're not Wonder Woman, Super Man, or any other superhero. You're a human going through a rough time. Don't expect to be able to do all you could before. Have a better quality of life, with the types of expectations you would want to see from others in the same state (after all, we're always harder on ourselves than anyone else). 

     Okay, so back to IKEA. With a hospital bed in the living-room, and a gazillion supplies (medical and office) plus some of the regular living-room things, it was very chaotic in this room. But, with help from IKEA, the room looks more like a living-room and less like a hospital storage room. What a change in the state of mind it is to have made these changes!

BEFORE                                                  AFTER

 Some was dispersed into other places.

BEFORE                                                                               AFTER 

                                                                                                                            

AND the drawers within are even organized too!    
Supplies now look like this....                                         even though delivered like this....                                       

                                                  

HOORAY!!!

     So whether you need to change your expectations (reorganize your mind), change your way of doing things (reorganize processes), or change your storage solutions (reorganize your environment), try it! You don't have anything to lose. Every little piece of mind that you can add to your peace of mind goes a long way towards quality of life, no matter what your medical situation!

Happy reorganizing!

Tip #427 Emergency Eventualities; Emergency Sheets 101

     So you're home recovering from severe trauma or illness (or you've brought your loved one home), you're tired, and want to have a vacation from this segment of life - and all of a sudden you're facing an emergency. Dealing with health emergencies are scary and inconvenient at the best of times, and now here you are at the worst of times having to face it anew. If this is the case, taking the time (and energy) to make an emergency plan, and preparing a few things ahead of time can be a wonderful energy and time saver later. Trust me, I've done this more than a few times, and it is always better to spend a little bit of time before the crisis rather than a lot of time in the crisis and after the crisis be you caregiver or patient.
      The "Emergency Eventualities" category is new as of tonight as I realized that there are so many things that can easily be done to be more prepared, but aren't often intuitive unless you've been down this road a few times before. I think if I had to pick just one thing to have prepared for emergencies I would say "Emergency" or "911" Sheets.  Put these sheets on the fridge or hang them on the wall by your bedside; somewhere anyone can access them easily for you (and is out in the open). Here are my suggestions regarding the content of the sheets (it looks like a lot, but I'm wordy and "detail-y: again - it won't take you too long to do this).
First Page 

• Write in red marker (or printer ink) "911" or "Emergency" on the top half of a blank sheet of paper. Everyone can find it then, and that's a good thing. 
• On the bottom half, have step-by-step instructions for the person using the sheets. Some of the instructions may sound silly or too fourth-grader-ish, but remember that people are often nervous in a crisis, or nervous because they're worried about you. So, keep it simple. For instance:Dial 911.  

1. Ask for an Ambulance. 
2. For: John Doe
3. The address: 4444 Something Avenue, Suite 16, Timbuktu (and list whether farm or apartment, house, etc)
4. Nearest cross street (sometimes they ask, sometimes they don't)
5. State the problem (now, if you know the reasons you would need to call 911 you can list them here, or you can just leave this space (after problem) blank for the one calling in.
6. Other health conditions (list the most important/relevant ones here. They don't need to know about nosebleeds and hemorrhoids. Keep it relevant and simple: cared for at home due to brain injury/malnutrition/heart condition, etc)

Note Ask anyone who may be calling 911 for you (caregivers, family, but probably not the pizza delivery man) to read through the instructions so as to clarify anything they are concerned about prior to any emergency.

Also, note that the caller will have to answer questions posed by the 911 operator such as "Is the person in crisis unconscious, or confused,"or "are they having chest pain?" and other such questions that should be fairly obvious and easy to answer in the moment. As an aside, at this point I'd like to share a laugh with you (note:  I am alive today because of the amazing 911 responses and I am very grateful for them - but I still think it's funny, and mean no disrespect :).  The fun part is that I have called 911 for myself on several occasions, and a few times now I have been asked if I am conscious. I hope so! If not, I am a walking miracle!! I've done some cool stuff in my life, but never so amazing as to be unconscious and still having a conversation with a 911 operator (which I might add includes providing information that has thus far always resulted in successfully directing them to my house)! The relevance here: some of the 911 operators read off questions from a list. Try not to take offence - it has nothing to do with you.

The Following page(s) (have a few copies of this section so that you can easily give 1 to the paramedics, 1 to the triage nurse at the hospital, 1 for the physician that will see you, and a spare for yourself to make answering their questions easier for you).

• Identifiers:Your name, Date of Birth, Health Card Number (and health card number version code for those of you in Ontario), and any relevant insurance policy numbers.
• Emergency Contact Numbers Who they are to call with respect to next of kin. If there is a cell phone number that's wonderful. Include an alternate person as well.
• Particulars Your weight (useful for calculating doses), and age 
• Medical History What conditions/diseases/disorders you have such as diabetes, a heart murmur, cancer, irritable bowel, etc.).
• Drug Allergies - and any other serious allergies you may have.
• Hydration/nutrition - This is meant for those who are on an IV (intravenous) or feeding tube regularly. List the rates and amounts.
• Current medications Include the name (nexium), the strength (40mg), and the frequency (morning and bedtime)
• Last Doses This is rarely necessary, but if you have recurrent maladies - infections for example, the last time you were on antibiotics this year is important. If it's procedures instead, list the last time those procedures occurred.
• Medical Team Members Names and phone/fax numbers of your family physician, specialists, home-care case manager, etc.
• Update Include the date of the last time you updated the sheets. I recommend each month, but if not much changes in that month then perhaps every 2 months should be the goal. I also suggest that you make extra copies each time you update to give to the non-emergent medical team members (like the dietician, physiotherapist, etc). It's handy for their records, and saves you time and energy too.

     I know this may seem like a lot of work, especially considering that you can't exactly be sure that you will be going in to the emergency, or that the sheets will be necessary for each of the additional medical team members. However, it really doesn't take that long, and if you do go in, it may be harder to think of all of that info while at the hospital (without the bottles to look at, the specialist's name that you hardly ever call, etc). If you keep a sheet for yourself each time too, you have the numbers you need at hand in the emergency room, and, miracle of miracles... when you are able to give these sheets to the medical professionals, you don't have to go through the same routine of verbally going over and over the info in that time frame, or at least not in as great detail. So much easier!!!!

    I hope that you try this. Even if you never use it, to me it is like the boy scout mantra; be prepared. Why? If it can save you loads of stress in a crisis, repetition during the mundane, and safety in an emergency. So why not? 

Happy Preparing!