Tip #309 Wise Words Wednesday; Waiting.

     "One of the greatest strains in life is 

the strain of waiting for God." 

— Oswald Chambers

     I'm not here to debate faith; whether there is or isn't a God, and if there is one, whether he's a he or a she or something else entirely. Your faith (or lack thereof), is your own and mine is mine, and I respect your right to your own beliefs.


     For me, I believe in God. And, I believe that in the midst of illness God is still a great God. I don't feel abandoned, but I do feel impatient. 


     And then I saw the quote above. Whether you are a person of faith or not, I think it is fair to say that Oswald still captures the strain of waiting. If not for God, then waiting for health, peace, freedom from pain or whatever other words you choose to substitute.


   Just wanted to tell you you're not alone, and someone else "gets" it. That's all.


Happy waiting for nary a minute more!



     

Tip #17 Frightening Fear; Fighting the Good good Fight

     Have you ever felt (as a caregiver and/or survivor) as though your life was out of control due to the severe trauma or injury you've experienced? Or, have you ever been frustrated that there is something that you really want to do - even need to do, but you can't do it because your body won't cooperate? That can be scary. It can be maddening, and it can be an astonishing and a difficult realization.

I told my body the other day that I needs to stop being such a traitor, and to hurry up about fixing itself. ASAP.

I have things to do.

     That's why I like this week's quote. It made me laugh, and I think it's a fun visual for fighting the good fight.

     Side note: Does that mean that if you can't get your feet on the floor yet, or that you may always need to adapt because of the trauma, that you're not doing okay? No. of course not. We're all allowed to be human.
     So, here's to fighting the good fight for the best life possible, however possible, whenever possible - whatever that looks like (eg. for me, it's asking God to show up and do His thing). And, Here's also to fighting for the most productive life possible when you are able, and however you are now able to do so.

    

PS, I got this from here, and sorry if there are any guys reading this.... that's just the way the quote was written!

Happy Hitting that floor!

Tip #57 Planning & Emergencies; Laying Life on the Line

     Don't worry I am not asking you to put your life on the line. No, actually I am wondering if you already have  - well ON the "lifeline" anyway.  What's the lifeline? Well, I'm going to ask you to keep an open mind right now and read beyond this description. It'd be great if you could hear me out instead of just deciding that this isn't for you.... Here it is:
     By Lifeline I basically mean a non-staples-easy-button-recovery-handy-service-and-as-a-last-resort-panic-button type of button for your home. How's that for a description? Unfortunately, what people tend to remember are the commercials from years ago that depicted various elderly people on the floor in their homes crying out to someone "Help I've fallen and I can't get up," and if not for Lifeline, they wouldn't them be able to get help.  Quite the slogan. Unfortunately that doesn't seem the least bit appetizing to anyone younger than 70 or so - and maybe not even then... It sure wasn't on the top of my priority list. And now I am so glad I have it. And I'm not eighty, and I don't seem to make it to the floor all that often these days.... but I digress...
     Professionally I ran into this a lot - people (lets say Joe) not liking the idea of needing a lifeline service, or the idea others might have when seeing Joe with it. Double whammy. No, not many people want it, but I think most everyone recovering from serious illness, trauma, injury and/or caring for someone thereof could benefit from it. And, incidentally, they are not just for help if you've fallen - despite website depictions! Here's a link the "Plillips" Lifeline page. Note a) there's a box to pick your country in the top right hand side of the page, and b) one of the pictures rotating through their site still has the elderly person laying on the floor as if they've fallen. Get with the times people! I do admit though, that is one very good reason to use it, and an amazing service to have for that reason - but it doesn't always have to be a senior does it? Once again, I digress....
     How does it work? You sign up for life line (or comparable product), they give you a waterproof necklace or bracelet (your choice), and you push the button when you need to. Stay tuned and I will tell you what constitutes you needing to press that button. After you press the button, someone from the company will speak to you through a speaker phone kind of unit (you don't have to get close to it), and he/she asks you what you need. Their last resort is to call an ambulance (unless you ask them to or you aren't answering at all). Instead, when you sign up, you give them three emergency numbers so that when you press the button, they can automatically go through your list of people so your family can come to you. Needing the button doesn't mean you need an ambulance. If you do -fine, if you don't - fine. Either way, it increases your safety and helps to give you a sense of growing independence.
     And, they also provide a medication reminder service with their Lifeline - and I actually just discovered that a few minutes ago when I was looking for the link. Guess what though? They talk about it in the context of seniors again! Still, you don't need to be a senior to use this. From what I saw, it looks like they can call to remind you when to take your meds, and which ones to take when, and that is lowering the amount of medication errors in the home. Awesome service.
     So, you may be asking "if I don't want the Lifeline for meds, and I don't want it because I'm not a falling risk, and I'm not a senior (or maybe you are, and that's okay too:), why on earth would I want to use it?" Here are a few of the instances that lend themselves to having the Lifeline service:

• It's great for people who are isolated; you live alone and/or in the country. Someone comes to the door (eg. unexpected delivery), and you feel vulnerable. You press the button, tell the person on the other end what the deal is, and they stay quiet on the line in case assistance is required. 
• It is helpful for people who need to "check in." You can receive an automated timer that prompts you to press a button. If you do press the button in response - great. If you don't, those emergency contacts you listed are called.
• You have an emergency and can't get to the phone to call 911. They'll call for you.
• You have an emergency and CAN get to the phone to call the 911, BUT are unable to have the energy or ability to do more than that. So, they'll reach your contacts for you to let them know for you.
• You have mobility issues: you're prone to falling down the stars or when navigating obstacles: both the panic button and.or the "check in" calls can be helpful in this instance (even if you're not a senior, and that's just fine too if you are!).
• You need the police called immediately. 
• You want to feel safe, but independent and okay to be on your own. Or you are safe and independent, and very able to do normal routines - but have an unpredictable illness.
• It's amazing for caregivers: if manual labour like lifting someone is required, caregiver can be harmed, and lifeline helpful then too - since that means you're likely to find both of you on the floor away from the phone at once.
• The phone rings, and you are not near it; you press your button and lo and behold, it answers the phone (and your call is still private).
• I've been told that some also use it for safety reasons when there is a history of domestic violence.
• Overall, it promotes independence, and provides peace of mind in may situations. 

Okay, so you get the gist. Many people find it hard to admit that they need this device. I say, maybe don't think of it as something you NEED, but something that will make you and your loved ones be safer, communication possible whatever the circumstance (for the most part), and increases independence too. Note that there is a charge per month, and it varies by company. I see it as a good investment if it is at all possible to achieve financially. 

     Well, I hope you are not as resistant to the idea of embracing the Lifeline service. Maybe check out the site, keep an open mind, and look at whether it's right for you. It may not be, but I think it's worth looking into. You can't plan emergencies after all, but you can make a plan to minimize them, and to minimize drug errors too. No I don't work for lifeline or anyone there...  

Happy Lifelining!

Tip #475 Wise Words Wednesday; Perfect Perspective

Hi. It's Wednesday, and I have a virus. Ick. Not the end of the world, but not nice - especially when recovery is one's main objective. Then I saw this quote, laughed, and felt better. I'm not the slowest person in the world... hooray!

I can live with that! Enjoy...


I'd love to give credit to the author, but unfortunately I saw this randomly, and can't trace it all the way back. If you know, please let me know:) Thanks!

Happy Lapping!!!!!

Tip #214 Relative Relations; Quality vs. Quantity

     I wrote a post last week called the "Ninja Report" addressing ways in which to communicate with others about all of this medical "stuff." The premise is that you use the words "ninja report" as a substitution for the complicated and/or embarrassing medical terms. Doing this can make it easier to have a quality conversation - a meaningful  conversation  that rejects unnecessary distracting medical info. That way, the the feelings behind the conversation can be easier to convey. And, hopefully, it will lead to some levity and a lot of laughter while still lending itself to receive support as well!
     But sometimes, quantity is more helpful than quality. How so, and how do you apply numbers to your recovery?  Medical models already include numbers like "how would you rate your pain on a scale from 1-10." The number chosen gives us a very good idea as to the degree of the pain someone is experiencing. Moreover, it gives us that info efficiently and can result in having the person to whom you are speaking understand the depth of the issue instantly.
     In the same way, using numbers when describing other aspects of recovery can help you and/or the person for whom you are caring. Numbers help us describe to other family members how recovery is progressing in a manner not bogged down by tricky medical details. It also helps well meaning loved ones who struggle when explaining to others how you or your loved one is recovering, without mixing up those tricky details. Have you ever played that telephone game - you know the one where a person whispers a sentence into someones ear, and they whisper it to the next person and so on?  And did you usually find that at the end of the line the resulting sentence was not even remotely close to what the first person whispered? Well, here are a few ways that numbers come to the rescue. People may not always like numbers, but everyone knows that 2+2=4.
     Let's start with pain, since it is already an existing tool. You could tell someone that the pain is at about 6 out of 10 today not 3 out of 10 (or, if you are fortunate, the other way around). Isn't that easier than trying to explain the quality of the pain or why it's there? It's a great tool.

     How about progress? It is easy to feel like someone is not getting better because, for example, the outward appearance doesn't change (e.g.still have a feeding tube, a cast, or are still immobile, etc). Moreover, sometimes pain isn't an issue (eg. working on speech after stroke), in which case pain numbers don't help with descriptions all that much. In such cases, I find it is easier to describe progress with tangible numbers. For instance, say I have a feeding tube; without explaining to you how it works, why I need it, or what it involves, I can use numbers to help you instantly have a grasp of where things are at. This scenario might look like this: "when I left hospital, I could run my feed pump at 5 ml/hour (lets say 5 units). My goal is 400 units. Currently I am at 306 units." Do you have any sense of my progress with said numbers? 

     Other examples?You can do the same for diabetes (I am able to stay in the acceptable range 30% of the time, my goal is 90% of the time), for anemia (my red blood cell count is supposed to be about 120 units and mine is 101 now, up from 74units). Most things can have numbers applied to indicate progress, sometimes - it just involves a little creativity in some cases. Oh, side note:  I like using the word "units" instead of mmHg, or Kcal, or any other units when describing number goals because it becomes a non-tricky measurement, and thus the focus is again in the desired place.

     There is one last place where numbers can be helpful in describing life right now; the new normal. Have you ever felt like friends and family (and others too) can't comprehend how you don't have all the time in the world in this phase of life?  Do you feel like some of them think that you are just sitting in a hammock all day, sipping hot cocoa, and watching soaps? They probably don't feel that way (we are our own worst critics) - but they likely still won't have a  great grasp on what this time in life truly looks like for you. It is often difficult for people to see that recovery doesn't just involve sitting on your rump to rest 24/7. And, people are not always aware that there are appointments galore, and regular functions of recovery (meds, exercises, speaking with medical team) that are both time consuming and usually hard work too! 

     And when recovery takes a very long time (beyond months) some people can feel like you are over the busy hump of recovery. If you have felt this way, or experienced comments that are distressing then perhaps it's time to hammer out some numbers for those that do want to know. And numbers that involve a concept of time (number per week or per month, per day, etc.) seem to be very successful in conveying your life's "new normal." 

For instance, using your own numbers and examples, you could relate something like the following:

14 - number of times you take medications during the day.

19- number of medication doses you use in those 14 administrations per day.

26 - number of people in your house each week (appointments, care giving, your loved ones, etc)

9 - number of hours hours per week communicating with medical team members via appointment, email or phone 

11 - number of hours per week doing medical "homework"(tasks assigned by medical team members like exercises for physiotherapist, eating/swallowing practice for the speech pathologist, etc. )

22 - number of immediate family members to share life with

Limitless - how much you want to be with said loved ones

0 - energy you have to do any of the above

     Obviously your numbers and items listed are specific to you and in no way are diminished if they are small numbers, and in no way ridiculous if they are large numbers, and ditto for the items you choose to list. It is what it is, and you are just showing others what "it" it is. :) Take care though not to use the numbers as a "trump" card to hold over another - they're just tools for communicating with understanding. And maybe don't account for every moment either, just a few items on the list like it is above. And as an aside, guess what? Even if you don't mention the numbers to anyone, but go through the process of calculating them - you communicate with the someone who needs to hear the numbers most... you! Many people find it a great relief and/or a bit of a shock to look at the numbers, but I won't go there today - that's a post for another day. 

     Okay, I'm wrapping it up. Thanks to those of you who have lasted this long and read this far, as I am soooo (obviously) long winded! I just have to say that I find it ironic that in my attempt to express the quality of the concept (which to me means providing details like I am writing in these brackets right now), I am requiring a great quantity of words to accomplish it!  What can I say?  I'm a work in progress... Thanks for your patience ;0

Happy math-ing!

     

  
     

Tip #196 Wise Words Wednesday; Laughing and Crying

Hi everyone,

I saw this quote (and art piece) and I love it.  I don't think that it requires any explanation at all. Hope you like it too. 

Click here for it's source.

Happy Wednesday!

Tip #136 Wise Words Wednesday;The Ninja Report

     I've often wondered if Ninja's truly exist. Well, I am sure that they do, but I guess I mean do the "TV-and-Hollywood-Land" ideas of what a Ninja may be - do they exist? Whether they do or not, the big and little screens have surely given us enough info that we can look at someone in marshal arts training and declare whether or not they are of ninja-status, or a million miles away from ever reaching that goal. What does this have to do with recovery from severe illness and/or trauma and/or caregiving for someone thereof? I promise it will make sense soon (at least, I hope it will!).
     I was watching TV one day, and a guy named Ted was talking to a guy named Marshall. Here's their conversation:

Marshall: "... So I was meant to turn in a report about using 23-b-3 Spurious Class Action Precedent to contest a class certification order based on lack of commonality and numerosity..."  

Ted: Dude, you lost us, can you just call it something cool like "The Ninja Report" or something?   

Marshall: Okay, yeah, fine whatever.... So, um I was supposed to turn in "The Ninja Report" yesterday.  

Ted and Group: Ooh, wow, cool...

     I laughed hard at this, and immediately decided to add the "ninja report" to my vocabulary (and I must say it works very well)! The Urban Dictionary has the conversation and a definition too, but I think the definition is obvious enough once you've read the conversation above.
     Here's the part where it relates to us: Do you find that people stop asking what is wrong, or what test you are having, or if you are okay with things, or if you are making progress? Or, do you feel like you don't want to answer specifically, or you want to share something, but can't put it into a non-embarrassing or uncomplicated way? And/or maybe you find that communicating with those you love about all of this medical stuff is complicated and aren't sure about what is or isn't okay to say or how to say it? More often than not people feel that their loved don't care if they don't ask. But, sometimes they don't ask because a) they are afraid they won't understand (which is a very valid point) , and/or b) that the details of your trauma aren't all that interesting and/or appropriate/easy to hear without panicking, etc. and c) they'd rather not know 'cause it's hard.
     Well, obviously some of these things could be addressed in a hundred ways and very in-depth. I'm no social worker, but I think I have stumbled onto a potentially easy way to make some of those conversations feel better, or go better. It's worked for me already.  If we're lucky, there will even be some laughing involved and that's almost always a good way to start to improve such situations.  Sound impressive? Well, we are talking about the power of ninja's here aren't we? Here's a silly example, but a real one I have witnessed...
So, you're sitting at the dinner table with the family, and Jane (whoever she happens to be). You ask...
Conversation 1) 
How are you Jane? Well, all week I've been trying to move my bowels, and it just isn't working. I've tried Senkot, Dulcolax, PEG crystals, and I've been sitting on the toilet for hours and I just still can't go. I wonder if the sloughing off of the colon itself produces a pound or a.... well, you get the picture.
Conversation 2) (the Ninja Version)
How are you Jane? Well, I am quite exhausted/frustrated. The ninja report was due 12 days ago and it is still not in. I'm working hard at it, but I just can't produce the result I need to. Jane didn't actually have conversation 2, but I suspect both she and her family member would have liked it.
     I'm not saying that there is never an appropriate time to have conversation number 1. Not at all. There are times when it is appropriate to discuss such things with certain people. Still, even if that is so, it can be tricky for others to keep up when you are talking about something so far out of their realm of experience and understanding. And if that's the case, you're not alone, and that's okay. But if you are having conversation number 2, don't you think it would be tricky to not giggle while you are saying the words, knowing only you understand the double meaning? I digress....
     Remember how we said that Hollywood has given us the ability to look at a marshal arts expert and declare whether or not they seems to have ninja status? It might not be the right understanding exactly, but it is enough understanding to be able to talk about ninja's. How good or bad a Ninja might be, what they wear and/or the weapons they use, etc. Well, that's the goal of the ninja report tactic -  providing understanding in a nice neat package, without complicating details.
     So, if you're in a tricky-to-explain situation, an I'm-embarrassed-but need-to-talk situation (and this role is often reversed as well), or a you-don't-need-to-know-my-exact-business kind of deal just because you'd like to, or many other such situations; be a conversational Ninja! Use your Ninja conversational skills and be a fast, efficient, strong, clear and brave conversationalist, and a little bit silly-looking too:) Hiiiyeahh!

Happy Reporting!