Happy New Years everyone! I know we are a couple of weeks in already! Last year is finally behind us and I’m looking forward to a fresh start in 2016!! As most of you are recovering from the stresses of the last month I’m looking forward into the year optimistic for great things to happen. I truly believe that this is going to be a year of big changes within the chronic world. For anyone wanting a look into the CRPS world, a new movie called Trial by Fire by Charles Mattocks is coming to an independent theatre near you. Hopefully this will open a few eyes as to what my world can be like at times! For a trailer of the movie go to http://www.trialbyfiremovie.com/.
Closer to home in the last few months I have taken the steps of writing emails to both our Premiere and our Health Minister. Why? I want changes to start happening in the medical community and within all levels of government so that chronic illness is seen for what it really is. For most of last year I’ve been thinking about various ways that I could do my little part. How can I do my little piece in bringing about change in perception and treatment, in those of us living with chronic illness. Sometimes you can overthink the answers that are right there in front of you. None of us would wish what we go through on a daily basis on anyone else right. We come up with all these great ideas of how we want to see and create change but that’s all they are most of the time is ideas. We never do anything about them because it requires putting ourselves out there and then it becomes too real!
So a while ago I decided I was tired of not putting myself out there. I made the decision I was going to take baby steps , and open myself up to taking different risks and seeing how they all play out. Its much like a relationship with God you have to open yourself up and make yourself vulnerable if you want to see change in your life. CRPS may have tried to steal a lot of different thing from me but I can use those things in so many positive ways. I don’t want to sit around and watch life pass me by because I know God has challenged me to do amazing things with the life He has given me. Are you willing to step over the line and take that same risk?
So I decided to start with something simple and wrote two emails. The first was one that went to the Premiere of our province explaining what my life had been like living with a chronic illness along with concerns within our health care system. Except I multiplied that by the thousands of us out there who live chronic lives, asking him to make Nov.2 a CRPS and Chronic Illness Day here in our province. Several weeks went by and I hadn’t received any type of a response.Then one day I opened up my email and there was a letter from the Premiere saying that he would pass it on to the Minister of Health. A few months had gone by and I had received no response from the Minister of Health so at that point I decided I had nothing to lose so I took steps once again and wrote another email.
Two days before Christmas I opened my email and to my surprise it was an email explaining that my request was going to be put forward in legislation, making Nov. 2, 2016 CRPS & Chronic Illness Day here in our province of Saskatchewan. It gives me hope and I was encouraged that if I could write a letter and receive a positive response like this, then what else can I do to create change or make a difference. Doing my small part is going to help the greater cause and no part is insignificant! What I’m trying to say is look at what you can do and not what you can’t do.
It takes an army to win a war and every person in that army has a roll to play. Think about an army of ants, each ant has a specific job that they have to carry out. They work together towards reaching and obtaining a goal like getting food or building their home. There are a million different examples that I could provide you but the point is that we can’t obtain our goals unless we work together in getting there. What does your little roll look like? Maybe its something as simple as sharing your story with someone who needs to be encouraged! Or maybe its taking on a greater roll within advocacy? So I challenge you to look at where you are at right now in this moment. Ask yourself what can I do to make a difference? If your having trouble trying to figure everything out then have a conversation with God because nobody knows you better and can provide some of the answers that you are looking for.
Its been one of those weeks where the needle on my gas tank has been running on empty! My pain level has been hard to manage and its taking everything within me to get through every day. Some days it feels as though I wake up and I just don’t have anything in me to give. I ask myself how I’m going to find the energy I need to get through that day. This is a fight I live day by day and some days are easier than others. Sometimes my tank is running on empty and others its full and getting great mileage. So like when you get into your car to go to work, I often find myself checking my gas tank to see if it needs filling.
Chronic illness can suck your tank dry and so you need to be checking the gas tank on a regular basis. I check mine every morning and for me that means having a conversation with God asking him to fill my tank. The last thing I want to do is run out of gas! For anyone battling CRPS or any other chronic illness you know that this can happen very quickly. Over the holidays I’ve had to fill my tank numerous times but by having that five minute conversation with God every morning I ensures that I never run out.
Its more than just checking to see if I have enough gas in the tank. There are other things that I need to check out with my car. Every so often you get the oil changed and you check the belts and all the other fluid levels. So I have to do the same thing with my chronic illness and check to make sure I’m putting all my different tools I use in order to manage my pain into place. I make sure that I add anything else that I might need to into that conversation I have with God. So maybe every once in a while that conversation with God is a little longer than five minutes.
As well as an oil change you have to have things like tune-ups and tires rotated in order to keep the car operating at its best. Doing all these things are all a part of a regular maintenance plan for your car. With your illness you have to make sure your doing the same things. You always hear mechanics saying that if you do the preventative maintenance then your car will run longer and last longer. Well the same holds true with your chronic illness. If you follow the plan your physician has set out for you it will make things more manageable in most cases. That’s not to say that you might have periods where things are difficult. It gives you the best chance at managing your illness more effectively and with as few symptoms as possible.
It can be so easy just to drive our cars into the ground not doing the things we need to do to maintain them! There are so many different ways that we can stay on top of the maintenance, yet that’s easier said than done. When your hurting all the time and all you do is spend time fighting your illness, it can be easy to forget those things you need to be doing on a regular basis. That’s why checking in with my mechanic (God) every day helps to keep everything running the way it should. Especially around this time of the year when it can be so easy for my body to break down!
I’m looking forward to the New Year and a much better year with my health. Looking back this last year was extremely tough both physically and mentally! If it wasn’t for those constant conversations with God to get through it all, my bolts would have rattled loose and my car would have started to break down. I wasn’t anticipating that it would take this long! Like when you have to rebuild a car engine I have to rebuild my body and that doesn’t happen overnight! I’ve had a great mechanic that’s been able to make sure all the parts are in place, and all the fluids are full. I’d highly recommend this mechanic because He does great work!
The first thing I want to pass on to everyone is a big Merry Christmas! In the next few hours I’ll be headed out to the lake where it truly is a winter wonderland, to celebrate Christmas with all our family which are too many to count. I also hope that all of you are getting through this holiday season without too much pain. This is that time of the year where things get a bit crazy in the chronic world! Schedules get crazy busy and stress levels increase causing lots of extra pain. It can be a time of the year that spoonies just want to forget because its such a taxing time on your body! Christmas in the chronic world can be filled with so much pain and suffering!
Honestly I struggled with what type of a post to put together because usually I put together one that speaks towards how to get through the Christmas season! I felt it was more important to put together a message with hope and encouragement, especially at this time of the year when people are feeling so discouraged. I get it because I’ve been living it! I’ve had those moments when you just want Christmas to be over, and your just barely hanging on for dear life. I understand just how much strength and determination it takes to battle through Christmas with all the extra stress.
When it comes to a message I wanted to keep it simple, and I’ll be open and honest. Like I’ve said before I put my life in Gods hands and let him shoulder everything in my life. So the key for me is allowing God to be the driver in my life. When things get hard I turn to Him! When I feel alone in this fight I turn to Him! When I think that I just can’t carry on this fight I turn to Him! See its pretty straight forward isn’t it! Yes absolutely there are things I have to do during the Christmas season to make things just a bit easier to live with my chronic illness. However only God can provide all our needs and you have to be willing to trust Him with your life! So at Christmas I trust Him all the more when things get difficult. Do you? Merry Christmas everyone!
Hi again! Christmas is right around the corner and it’s coming quickly! It’s the time of year that is so difficult for so many of us! Why? It’s taxing on our nervous systems and we have a hard time keeping the stress levels down or the triggers that set off our pain. So let me just say this! If you have a friend or a family member that deals with CRPS or chronic illness, keep in mind that this might not be an easy time of the year for them. I feel as though this has become a message that I try to speak to every year because it’s important! We are trying and want to enjoy this time of the year but it just isn’t easy for us. So I guess I’m saying be patient and supportive of those around you.
The last week has been full of lots of ups and downs on the pain front, and I’m doing what I can not to fall apart. Like every other day however I battle through and get stronger with every passing day. My illness might be holding me back in a physical sense but I know that from the inside out I’m only getting stronger, smarter, and wiser. I have been affected by CRPS for ten years now and in so many ways its forced me to become stronger. Why? If I’m not stronger in how I battle through each day then slowly the illness breaks you down and over time it could lead to depression or worse yet suicide. So every day I wake up and the first then I do is ask God to give me the strength because I don’t know where else I would get it from. Not only the physical strength to get through every day but the mental strength as well.
As I’ve walked this journey I’ve also become a lot happier because I’ve been able to learn from all the struggles that I’ve had to go through. Lets face it over the time that I’ve had to live with CRPS there have been more than a few ups and downs. There were days where the journey seemed all too much, and trials that have felt nearly impossible to live through making it hard to be happy at times. There were certain times I took on a defeatist attitude and chose to go to a negative place, believing that happiness wasn’t going to be possible. When I really think about it, those beliefs were coming from a place of fear. One in which I probably chose to shut God out sometimes because it was easier to give up and feel sorry for myself, than to trust that He could bring a renewed strength, happiness, and wisdom when I needed it. If I wanted to change this and stop it from happening, then I needed to have an even stronger “all in” attitude and trust that He would provide! Its taken time and a continued effort but slowly I’ve started to see things change. There is a peace I didn’t have before and I’m happier than I’ve been in a long time.
I’ve been fighting this war against CRPS far to long not to know that there might be other trials I come up against down the road. The difference is that I am prepared to face them if need be! My confidence is stronger and I have become so much wiser to Gods promises in my life. Its taken a lot of hard work to get to where I’m at today. Putting in the effort to learn about my CRPS and how to manage to live a “happy life” with my disability hasn’t been exactly easy. Sometimes it’s taken falling down and getting back up to learn how to cope and manage but I’m all the wiser for it. There have been so many hard and sometimes painful lessons that I’ve had to go through. All of them in their own little way however have helped me to open my eyes and see things in a different light.
Living a chronic life hasn’t been easy but its changed me for the better! I say this because in a lot of ways I appreciate life way more now more than I ever did before!
Sorry about the delay once again in getting a post up but last month was crazy as we tried to get back to life as normal. The kids were back in school along with all the other things that come with being a parent. It’s pushed my body to the max with my CRPS and so I just didn’t put anything together for the blog. The past week or two I’ve also been dealing with a cold that doesn’t want to go away. This time of year is hard for anyone dealing with chronic illness. Why? Most of us deal with immune systems that are compromised and so we catch anything and everything that’s going around! As you read through my latest post also enjoy some more of my pictures
Today I wanted to talk about something that I’ve been talking about a lot in recent weeks in my chronic pain circles. It has to do with the medications we take and the stigma around those of us who take narcotics and other prescription drugs. It’s a subject that walks a really fine line and I can see argument on both the patient side and the health systems side. A very high percentage of patients who suffer from chronic illness are talking narcotics as part of pain management programs designed by either their doctor or specialist. A vast majority of these patients will be on these medications for most of their life, unless a cure is found for the specific illness they suffer from. As a result patients will then have to visit the Dr. on a regular basis to refill their perscriptions. In Canada in the province that I live, my doctor is required by law to refill my perscriptions every 30 days when I am on my last dose. He is not allowed to write a perscription for any longer or any sooner for that matter.
With doctors booking several weeks out it can be a big problem to refill your perscriptions. For the most part I can schedule my appointments one month out, but occasionally for various reasons I’m forced to cancel. The problem comes in that I often have to fight with the office in order to try and get back in to renew my prescriptions. As with most narcotics if you miss even one dose, your body can start showing symptoms of withdraw. With all my other medications my physician can write my prescriptions for three months and then follow up with me. Why not the narcotics as well? I understand all the laws and regulations that the doctors have to follow, and not for a minute do I blame them because they are doing what the law and Board of Physicans requires of them. This is where the governing bodies that make all laws and regulations that physicians have to adhere to, need to listen to the patient and regulate with the chronically ill patient in mind. I’m not saying that we don’t have to have strict regulations for narcotics because we do. In order to prevent abuse of prescription drugs we absolutely do. However there needs to be a better process for those of us who are taking narcotics or other prescription drugs long term.
Patients suffering from a chronic illness also face the constant stigma of being made to feel as though they are addicts. If you took a survey of chronically ill patients and asked them about their experiences when it comes to refilling their perscriptions, I’m sure they’d tell you that that they were made to feel as if they were an addict. I realize that this is more of an issue of how the physician treats the patient, but the regulations around the refilling of prescriptions don’t help. I’ve been on my meds for ten years and will be for the rest of my life unless they find a cure for CRPS. What I would give to not have to take a handful of pills every day! I don’t need to add to all I’m going through by being made out to feel as if I am an addict. Not that my physician is like that because he isn’t but I speak for all the others that are being made to feel that way. In order to have quality of life and to be able to function my body is dependant upon a carefully designed pain management plan that uses narcotics and other perscription drugs.
My question is this! Can the patient be monitered in such a way that they don’t feel as if they are labelled the minute they walk into the physicians office?
Now if I take a step back into reality for just one minute then the reality is that we don’t always have things like the amazing waves or amazing scenery to distract us. So you need to find ways to do that! For me as most of you know photography is that distraction. I put all my energy into taking pictures and the entire process to produce the best ones I can. My point is that distraction can play a huge roll in getting your mind off the pain. The mind is powerful and believe it or not you can control your pain to some extent!
Life with a chronic illness is about challenging the illness itself, and proving to myself that anything is possible when you set your mind to it. It wasn’t my fault that I got sick and then all of a sudden all these limitations were placed on my life. I accept that now and believe me it took a really long time to stop asking why something like this would happen or to just move on from that. I want to live life to the fullest, and I want to experience all kinds of amazing things in my life. You can’t do that when you live paralyzed by fear! I approach every day with an attitude that I’m not going to let fear into my life. It means trying the things that seem impossible and not worrying about failure. Be proud of yourself for even trying! What if you do succeed? Then you’ve just empowered yourself to push beyond your limitations.
I get it! I understand when your diagnosed with an illness or a disability of some sort that it stops you cold in your tracks! Don’t let it stop you though because as I always say “you can do great things with your life”! If you need support from others then go out and find it because I’m telling you it helps. Over the last several years I’ve met a lot of people in the world of chronic illness. We encourage each other to push through difficult times or congratulate each other when we succeed!
I don’t believe that life shuts down for a second and I don’t think God does either. I believe that He wants to see bigger and better things come of your life. If you want to keep living in fear then that is your choice. I guarantee you that by asking God for help with that fear however that amazing things can and will happen in your life. The other day as we explored this amazing island we came across a quadrapalegic artist who paints with his mouth. The pieces of artwork he produces were amazing and only encouraged me more to look forward not backwards. God has obviously given him a very special talent, like He has given each and every one of us. This artist has chosen to turn his disability into something positive and an example to us all.
So my challenge to you is this! Make a commitment to yourself to break away from the fear if it has a stronghold on you. Don’t be scared to try and move forward with life after your diagnosis. It may not go in the direction you had planned but you might be surprised in the results you achieve!
It’s been a while since my last post but I had to give myself some time to rest and try and deal with all the extra pain. It’s no secret that since my last surgery I’ve been really fighting to get myself back to where I was at before. I made the decision earlier in the summer to step away from my writing for a while so I could focus on myself and my daily struggles. I haven’t given up this blog or anything like that, so don’t think I’m shutting this down. I also needed to step back and get a new perspective on how I want to write this blog. When I started all of this I always made a promise to myself that every post would have meaning, or enable the reader to take something away from it.
All summer I’ve been living out at the lake with my family taking care of myself trying to bounce back to normal for someone living with CRPS. If anything it’s allowed me to clear my head so that I can better share my experiences as I walk through this journey. When living with CRPS you never know what each day is going to bring upon you, or what path that journey is going to take. It just so happens that this summer I hit that fork in the road and I needed to choose which road to go down. Do I choose the road that has all the hills to climb and takes more effort, or the one that’s easier to navigate leaving me with more energy. As much as I wanted to write through this summer I just didn’t have the energy to keep going. Over ten years I’ve gotten really good at figuring out balance! Listening to what my body says is ok and when to just shut down!
It’s been a difficult year and with that has come decisions where I’ve had to slow a lot of things down. The best piece of advice that I can give to people isn’t hidden in the latest research or treatments! What I can advise is listen to your body! Do what works for you, not what works for everyone else! Pay close attention to what triggers your pain. Is there something that you can do that reduces the pain? If so have you made it a routine that you do it more than once or twice? Find what works best for your body and not someone else’s body. I’m not at all saying we shouldn’t help each other with ideas on how to manage at all. I’m just saying so often it’s easy to say well it worked for that person so it should work for me! Their body isn’t yours and what works for their pain control may not work for you. Listen to what your body is saying!
I know this post is pretty light and there isn’t much to it but I wanted to put something up and let all of you who read this know that I’ve just been taking some time for myself. Now I’m ready to get back at it and start writing again. One thing I found since becoming sick is that your body is always on high alert and being tired has just become a part of life. My way of dealing with that is just to step back and say I need a break! Summer and cottage life allows me to do that!
Once again it’s summer and I’m now living at the lake! It means finding time to go online and write posts is a little more difficult. I don’t have the same access to the Internet as I do at home and so my posts are a little more spread out in between so I apologize for that. That being said this is just what the doctor ordered so that my body can heal. I always find that the relaxed pace out here helps to calm my nervous system and the pain isn’t quite as bad. Although over the last few days I’ve been fighting a pretty mean flare up.
Since the last post there have been a few developments that a lot of you that read my blog don’t know about. About two or three days before Canada Day here I unfortunately decided that If having CRPS wasn’t bad enough, that I had to go and break my wrist on my bad hand. As a result its set off a chain of flare ups that I’ve been trying to manage. Fortunately the break wasn’t too bad but it is a hairline fracture and the trauma as a result has sent my nervous system into a tailspin that I have to deal with. It just seems to be one thing after another but I’m not letting it discourage me or stop me! Yes I have to deal with a bunch of extra pain but it will pass!
Not everything is bad news however and it appears that slowly my recovery from my implant surgery is starting to improve. Things aren’t perfect by any means but bit by bit things get a bit easier to do. The physical limitations are still many and endurance is still an issue but I’m gaining ground. According to the surgeon, I still have several months before I can return to lifting things and doing the things I was doing before the surgery. The pain is hard to figure out because one minute it can drop me to my knees, and the next minute it can be all alright. So from that standpoint some days are still much easier than others.
This leads me to what I wanted to talk about today. Several times I have been asked if I would have this surgery again with all the problems I’ve had going through it. My answer has always been “yes” without doubt. You have to understand that while my surgery was being done they ran into difficulty as can be the case in any surgery. So with that being said it wasn’t the norm. When you make that decision to have the surgery you accept that you might run into problems and have to deal with the unexpected. So why go through it? Its very simple if my pain decreases by even ten percent then the bottom line is that I’m dealing with less pain. It makes dealing with everything I have to go through worth it. Like any other type of treatment you take a chance that it will be successful. If I don’t take the chance then I stay stuck where I am at. Do you struggle in your head to make the decision? Of course you do because nobody wants to put their body through all of that. If I don’t take that chance however then I’ll never know, maybe my results could be fantastic and I could get sixty percent pain relief.
I say all of this because I know and believe in the implant process. If I hadn’t done the one for my leg then I’d still be walking with a cane today! It doesn’t work for everyone but unless you try then you’ll never know!
End of the school year is always such a busy time of the year for us. To try and find any energy at all to write is difficult. I know it might seem funny when I say finding energy to do something as simple as type and think of the words you want to write! For someone who lives a Chronic Life though basic choices can be so difficult to make every day. If all my energy is being used up just to do the things necessary to get through the day then it leaves nothing in the tank! Which leads me to what I wanted to post about today.
Often you might hear people who live a chronic life throwing around the term “Spoonie” saying to one another that they send spoons to one another. There are all kinds ways that those of us with chronic illness use the term but what does it mean? A Spoonie is someone who is living with chronic illness. The term being a Spoonie derives from a post that Christine Miserandino wrote in 2010 called the Spoon Theory. She suffers from Lupus and I would strongly suggest that you go to the post and read it to understand what the theory is all about. The theory itself is was created while Christine was out with a friend for lunch. While at lunch her friend asks her what living with Lupus is like. What followed was the creation of the “Spoon Theory”!
Most people who are healthy start out every day with all kinds of energy to so whatever they want to do. A person living with chronic illness doesn’t have that same energy and has to make choices that result in the use of what precious little energy they have. So to better explain that to her friend she grabbed a bunch of spoons off the table and handed them to her friend saying you now have Lupus. Count the number of spoons you have and that’s all you have for the day. With every choice you make in a day it uses up the spoons. She wanted her friend to have something physical in her hands to hold and then have taken away as she made those choices.
I don’t want to go through the entire theory so you really do have to go and read it for yourself. Its a great way to demonstrate that our daily life is about making choices, and that we only have so many spoons any given day to make those choices with. The spoon theory is an excellent way of showing people on the outside looking in just what daily life is really like living with Chronic Illness. So when you hear people talking about how many spoons it took to do this or how many it took to do that, you’ll have a better understanding of what we are talking about. I guess in some ways its a bit of a secret language but people need to understand that it isn’t something to laugh about. Its a very real way of us talking about our illnesses and how we manage each day!
I know it might sound funny me calling someone a Spoonie but when you understand the theory and what its really all about it doesn’t seem so funny anymore. Once again its about understanding and educating others to see the reality of what we live with every day. I know this doesn’t seem like very much of a post for today but someone emailed me asking what a Spoonie was! I also think that in order for me to explain the term, I need to refer it back to who created it all in the first place!
Ten years ago I began this fight with chronic illness and I vowed to myself I’d never give up! That I’d never lose hope or let it stop me from doing the things I wanted to do. Unless you live with chronic illness then its hard for you to appreciate just how hard it is to get up each morning, knowing that your goal for that day will be to get through it in the least amount of pain! Some days are just an extension of the long nights with no sleep, fighting through the pain that wakes you with the slightest move if your lucky enough to fall asleep! I’m not saying all this because I’m looking for any type of pity but because I want people to see the reality of living with a “Invisible Illness”.
Chronic Illness is drawing attention at the moment under that term because people are finally starting to see it for what it really is. Its those symptoms that lots of people don’t see that make going through an illness like CRPS so difficult. Half the battle in bringing about awareness with chronic illness is changing perception of the public and how they view us! What a lot of people don’t stop and think about is that on the outside a person suffering with chronic pain can look very normal but on the inside their body is at war with itself. People don’t understand that I can walk into a crowded restaurant feeling fine but the noise sets off a trigger of mine which makes my pain spike! This then sends me into a tailspin for days and it becomes hard to function at very basic levels.
Did you know that in the U.S. 96% of all cases of people being dignosed with a chronic illness show no outword signs of their illness. What people need to know and empathize with however is that those symptoms that you don’t see can hinder a person from going to school, work, or even to just socialize. Now I know I mentioned before how dibilitating an illness like CRPS or other chronic illness can be but there’s a point to where I’m going with this. If a teacher doesn’t know that a student is suffering from a chronic illness that causes cognitive imparements then they become impatient with the student. That student might look and act normal most of the time and so on the outside things appear normal. If you educate the teacher about the student then the teacher can work with the disability.
So when it comes to work its largely the same in that things might seem normal on the outside but there can be something completly different going on inside. With CRPS I have a physical side to the disease that shows but you’d be amazed at how many people judge me and say “well its just a hand”! They miss everything thats going on inside my body and how its fighting itself. They miss how my nervous system has developed a mind of its own and how I’ve lost control of it. If we educate people on this however then the battles that we hear about in getting employers to recognize chronic illness become fewer.
The social side of a silent illness is a little different when it comes to understanding. A person who deals with chronic illness learns very quickly the various triggers that affect them and cause pain to be greater. I won’t get into the triggers because there are lots and for everyone they are different. What I will say is this, when we are trying to manage our symptoms we will do what we need to do in order to manage them. So when a person dealing with a chronic illness seems anti social and needs time alone let them. They are probably trying to manage their illness! Again its educating friends and family about this so that they understand whats going on inside that person.
So if you haven’t already caught on to the point of this post then let me summerize things for you in a nutshell. Its really about educating people on Chronic Life! If those of us living a life of chronic illness want to be understood then its our job to help educate and bring awareness. As a result of doing this then we will start seeing perceptions change and thus the hidden side of chronic life will become more exposed and less invisible!