A Spoonie Isn’t A Kitchen Utensil!

Today’s challenge will be to try and put together two articles I need to write combined with a very busy family schedule for today. It’s going to take every available spoon to get through the day but I’m confident I can do it. So you might be asking yourself what is a spoon? Well in my world the term spoon is making reference to the amount of energy that those of us who are chronically ill have. If that’s not confusing enough patients fighting chronic illness commonly refer to one another by the term “spoonies”. Confused yet? This all has to do with breaking down your day into manageable pieces through using spoons. Still confused? Let me shed some light on all this.

Today I want to talk about something that I think is a huge part of pain management that so often gets missed. If we are going to manage our pain effectively then breaking up our day into manageable pieces is crucial. Its like running your car with no oil! You will eventually do damage to the engine if you run the oil dry! So if you use up all your energy or “spoons” then you’ll find that the same thing will happen. You start to push yourself beyond your limits and end up setting yourself back. I use to push myself really hard because I just wanted life to be back to what it was before getting sick! This is something I have to still work at because sometimes I can’t always make the choices I’d like to and because of that I end up dealing with flare ups.

I know some of you are reading this thinking I’m crazy! Where did all this talk about cutlery come from and it makes absolutely no sense. When I first started hearing other people diagnosed with chronic illness talk about “spoonies” and “spoons” I had to wonder! Then I did some digging and found The Spoon Theory written by Christine Miserandino. If you want more information then I’d urge you to drop check out her site and it will explain more of how this theory was born! I think if your going to understand those of us that are sick better then you need to understand some of the terminology that we use.

So what are we talking about here? On any given day I only have so much energy and once my spoons run out I’m done for the day. It’s a way for those of us that are sick to manage our day in a very effective way. What this does is cause you as the one who’s sick to think ahead as to what effort its going to take in managing your day to day. In my case maybe its planning out that school concert of my daughters that I have to go to tomorrow. If I know that its going to take half of the spoons that I have for the day, then I have to make a plan for getting through the rest of the day with the remaining spoons that I have left.

The theory itself is really common sense in understanding that certain things are going to cause us to use up our spoons faster than others. So its trying to find that balance in order to get yourself through the day, so that just maybe you have one or two spoons left over! Now I know there are some of you thinking isn’t it just as simple as making up a schedule for the day. It isn’t that easy when your sick because you never know what each day is going to throw at you! There are days where it can take every ounce of strength to do one simple task.  I can’t wait for the day where I don’t have to manage my day in this way. For now I do though and it helps in reducing the number of flare ups that I have to deal with.

What I find is that so often we push ourselves past the point of no return with our pain and then we end up paying for it. That desire to do just that little bit more or for things to be the way they used to be takes over. This often sends our bodies into survival mode causing spikes in our pain and this vicious up and down cycle of flare ups, and so instead of being able to manage our illness we no react to it instead. I know that what I’m writing about today isn’t some complex theory or ground breaking discovery into a cure for a disease! I do however think that it’s a very important aspect of pain management that we need to be using.

At the end of the day it comes down to me doing everything possible to fight back against my illness and improve the quality of my life. Counting spoons is just another excellent tool to add to the toolbox!

You Hold The Power To Create Change

Happy New Year everyone! The very fact that your reading this means that not only “you” but “I” managed to get through the holidays! Yes its a little past New Years but everything in my world goes at a slower pace! It’s a new year and I’m looking forward to renewed health and wellness for all of us that are suffering from chronic pain. For me personally it’s been a challenging few months battling a few symptoms, that lately seem to be in a constant state of flare. However it doesn’t change how I approach this illness, and I continue to remain optimistic and hopeful. At the same time I’m feeling the need to take a time out and rest my weary body.

In starting out the year I need to refocus and get back to basics which is looking at myself, and to know that the single most effective way to beat this illness is held within me. I’ve been digging deep within myself lately asking myself how I’ve been able to get as far as I have in this battle against CRPS. When things have seemed impossible they’ve been made possible and to that I need to give credit to God for being there through it all. My brain starts to hurt when I think of the number of times when things were too tough to handle, or when the roadblocks I faced seemed next to impossible to get past. Every time though with strength, determination, and a positive attitude I manage to get through whatever situation I’ve faced. Once again I have to give credit to God for giving me all of those things.

Attitude and how we approach our illness is huge, and often I think we can find opportunity to do a much better job at this. I want to be really careful in how I word things because my intention is to make us think about how we approach our illness. Some things are not in our control and I realize that! So there are variables that of course are going to affect how we think, approach, or even act on our diagnosis. That being said I always think there’s room for improving. So what I’m saying is look within your own situation and really ask yourself is there anything you can do differently, or change about your attitude or how you handle your illness. Its a really tough question because this is where some of those variables come into play. You may have had bad experiences with physicians or family members that just don’t understand what your going through. So my question to you would be this. Is there an opportunity to have grace or forgiveness in that situation? Or are you holding on to anger and resentment towards them? I use these two examples because these would be the two that most of us can most easily relate to.

Both these areas do hold opportunity for use to change our attitude, and although it might not be very easy it might just make walking through your journey a little easier! We get so caught up in some of the things that are out of our control that it stops us from seeing that some of the answers are right there within us. Not to mention that it can cause a huge shift in our attitude! That doctor who’s working really hard to help us in a really crappy situation isn’t responsible for us being sick. Yet often anger and frustration often gets directed towards them just because they can’t provide us every answer “you” or “I” want. Even when we come up against that physician or specialist that doesn’t know about our illness or doesn’t treat us the way we deserve to be treated. There’s an opportunity right there in how we deal with the situation that may arise as a result! Try to look at things from a different perspective because maybe just maybe some of the answers aren’t as cut and dry for them as they may seem for us. We get so desperate for answers however that we lose perspective of that because we start letting our emotions take over.

Believe me I get it! All I’m really trying to say is that sometimes we miss what’s right there inside of us. We hold this incredible amount of power within ourselves to change the entire outlook of our diagnosis. Along with changing how we manage every day life within our illness. Do you get what I’m trying to say? The question is this! Are you willing look within yourself to find it?

 

 

 

 

 

“The Crisis”

 

Last night was one of those typical nights where you toss and turn trying not to lose your mind! With pain levels spiking because of a flare up there wasn’t a whole lot to do but do what I do every night in praying that the pain eases. Nights like last night are typical of someone who deals with CRPS, Rheumatoid Arthritis, Autoimmune Disorders, or any other chronic pain condition for that matter. The last thing I wanted to do today besides wanting to crawl into a corner and rock in the fetal position, was tackle the very simple task of every day life! Most of you get up you have a cup of coffee and then you go about your day. For me I wake up take twenty pills to ease my pain and have to carefully plan what I can and can’t do, or what will expend to much energy causing me more pain!

I’m passionate about standing up for my fellow survivors who live with chronic pain! So the waters I’m about to enter today are solely my own views and nobody but mine! Just want to make it clear so that there are no misunderstandings. I’m writing this from my view as the chronically ill patient! Over the last little while the whole opioid crisis has been drawing a lot of attention and I just want to express my opinion of this whole issue. Governments are wanting to take opioids away from chronic pain sufferers and it would be a disaster waiting to happen.

There is a tremendous amount of fear and anger out there in the chronic pain world because of what I will refer to as “the crisis” in this article. I along with others don’t take them out of choice but out of necessity to manage and have the quality of life that I do. Yet some people would be quick to label me as an addict! I do my best to take low dosages and use alternate methods to manage my pain where possible but the reality is that not all alternate methods will work to relieve my pain.

These in my opinion are not the actions of someone who is looking to abuse medications. If I could get rid of my medication and the pain today then I would! Believe me when I say ten years of pain has been long enough! I’m not looking to take the next pill or the other 20 others I have to take throughout the day!

Patients are getting passed from physician to physician in looking for treatment and diagnosis. This makes the patients look as if they are just bouncing from doctor to get the next Rx or get their next fix! As a patient advocate and someone who’s been through the revolving door of doctors nothing upsets me more than to see us being viewed in this way! Why is this happening? Ask anyone suffering from chronic pain and they’ll tell you their desperate for answers and treatment. I think we need to focus more on research for cures and alternate treatments!

As a patient with an illness that has little known about it and no cure in site what are my options? Not many! Sure this is where lots of physicians get stuck, and whip out the prescription pad saying “here try this but I can’t help you any further” leaving the patient with no other choice but to source another physician. I’m lucky enough to have a team of doctors who don’t do this and carefully monitor my medications and try where possible to decrease if they can. They see the need to balance the use of opioids in order to control the pain in conjunction with sourcing other methods of pain control. I’m lucky that for the most part this allows me to function throughout the day!

Taking opioids away from the patient that is suffering from chronic pain and is chronically ill in my opinion will only make “the crisis” worse and cause more patients to become desperate with even fewer choices! Thus leading to higher rates of suicide.  If we can come up with cures and treatments then hopefully chronic pain patients shouldn’t have to rely on these medications as much. Not giving me any voice however doesn’t help to solve the problem. The patient needs to be a part of the overall solution!

CRPS & the Family!

imageI promised myself yesterday that I wouldn’t let weeks go bye before I put up another post! Look at me! I’m trying to get back into my writing but with two busy kids and living a chronic life it’s not the easiest thing to do in this season of my life. It’s hard to believe but I’ve been writing this blog now for seven years! It seems like just yesterday that I was writing from a place of uncertainty when I was first diagnosed. Without a doubt the last ten years has been filled with some pretty emotional stories! This last few weeks has brought all those emotions flooding back! On Nov. 2 when I hosted CRPS Awareness Day I saw faces in the auditorium that almost felt as if they were a reflection of mine back when I was diagnosed. I could see the anger and the fear in some of the patients eyes, and I could hear uncertainty in their voices as they spoke. As I stood in front of those patients I reminded them that “your going to get through this” as hard as it might be right now! I told them not to give up hope!

As I spoke with various people diagnosed with CRPS throughout the day, one of the things that came up over and over was how hard their diagnosis has been on the family as a whole. An illness like CRPS has a huge impact on how the family functions and it adds even more stress to your relationships. Sometimes we don’t stop for a minute to think about how chronic illness affects them. I have a wife who has sits back and watches every day play out in front of her with there being very little she can do to help me. What support groups are there for her? None! My children being kids would like nothing more than to be able to run up to dad in the morning and jump on me or do the usual things they do with their parents. They can’t! Who explains to the child why all of this has to be this way? The parents! Fortunately God has given a lot of wisdom and understanding to manage all of this.image

Family life is a bit different when your living a chronic life, and has taught me to how to have grace for others in the family who have to deal with me being ill. God helps us navigate our way through it as a family. Most of the time we talk out loud about challenges we face and work on how we can make things better. It’s not to say that things are easy all the time because they aren’t. Often there are times of misunderstanding and it takes a whole lot of listening and explaining of things to each other in order to work through the challenges we face. Now I don’t want to paint a negative picture of what family life is like because if anything in a lot of ways this illness has made our family stronger. I’m just saying that an illness like CRPS changes how you go about every day life. On the days that my wife is having a tough day I try to be there just as she tries to be there for me on my bad days! Am I perfect and there for her on every one of those days? Not at all! This is what I’m talking about in that it isn’t easy, that there’s a lot of give and take in order to support one another in the ways that we need to! There are a lot of days where I have to humble myself to tell my kids “sorry that daddy was a grouch today, the pain got the best of me” in order to help them understand why dad is acting the way that he does!

Its not easy to explain every aspect of how family life changes with a chronic illness because it can vary so much from family to family. What you really need to know though is that it affects the interactions and relationships between family members! There are lots of days that I want to blame my illness for everything and how its affected our family but what good would that do. What I really need to do is focus on making those relationships and interactions the best I can within the peramiters of my illness. Fostering strong relationships and interacting can be tougher however and takes a bit more effort when your dealing with an illness like this. So as a family we’ve had to put our heads together to figure out the best way to do that! We have relied heavily on asking God for wisdom on how to handle this.

So unless there is a cure for CRPS then trying to figure out how to manage my illness with having a great family life will always be a balancing act! So it means being aware of how it can affect our family and not allowing it to have a negative affect on us. We need to keep working hard and to see only the positives of how it has actually brought us closer together as a family.

 

 

 

 

 

 

 

 

 

 

 

 

You Have The Power To Create Change!

Its been a rough go lately dealing with extra pain but somehow I manage to keep moving forward! A few weeks ago I traveled down to Huntington Beach to attend the Global Genes Rare Disease Summit. The stress of the travel was hard on my body and although I had to fight a lot of extra pain it was well worth it. There’s a trade off that comes with living a chronic life and I know there are others of you out there that understand what I’m talking about. Its all a part of me moving forward with my life and not allowing your illness to take all control!

I arrived home from the Summit changed but in a really good way. When your sitting beside a person who is one of only five people in the U.S. that has a rare form of cancer things are suddenly put into perspective. There was unique story after unique story each one impacting me in a different way. It was impossible to take away just one thing! If I felt inspired to do something about CRPS before, I left feeling as if I had to do all that much more! When I looked at the work that some people had been doing to raise awareness for their particular illnesses, I had to ask myself what am I really doing? At the end of the weekend we all went back home having gained 500 friends and a wealth of knowledge to take back to our communities.

I really feel I was able to make some strong connections and tap into some resources that will be useful here in my own community and province. Although its hard at the best of times to battle on with chronic illness I believe God gives us an abundance of strength when we need it the most, never giving us more than we can handle. With that being said as I left the conference knowing that I needed to be stronger in my advocacy efforts I came to the conclusion that no matter what I face or take on, God will provide in every way I need Him to along the way. I don’t want to be that person who says “I can’t” just because the path in front of me looks too difficult. I need to remember that God is guiding this walk and that when I’m lacking clarity or vision that I’m to look towards Him.

As I prepare to have the first ever CRPS Awareness day here for the Province of Saskatchewan I can feel my legs begin to tremble just at the thought of having to put this one day event on. Some of the people coming to this event hold important positions within our community and even our province. So sometimes I question my qualifications or I tell myself I’m way out of my league when it comes to taking this on. However nothing could be further from the truth. My qualifications speak for themselves having lived this illness for the past ten years! I need push forward because I have a testimony within my story that might just help one person find the care they need, or cause one Dr. to stop and think about how they diagnose and treat a patient. It might even be that one person from our government who comes to the event and is impacted. Leading them to say that we need to work on policy and legislation. Let me be very clear! All I’m saying is that by standing still I won’t create change!

Fast forward two weeks because this post was suppose to be up already but there’s just been too much going on and not enough time to do everything! CRPS Awareness Day went ahead this week and was a huge success! I’m not going to lie when I say I was a little worried that I wasn’t going to fill seats for my key note speaker but we were at full capacity and I think a few people other than patients walked away better informed of what CRPS is. The next day I was asked to speak at another conference and share my story with a group from within our health district. As much as I was nervous about getting up and doing it I knew I had to because we need to spread the word and make people listen.

Its not about being qualified! Stories bring with them power to change, whether it be my story or your story or someone else’s! It’s only when we move that we make a difference but you have to ask yourself are you willing to do it? Through sharing my story and all that has been thrown at me over the last ten years it is my hope that I will make a difference. All I can do is hope and leave the rest up to God!