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!
I’m back! Did you think I was never going to write another post? I needed to take a bit of a break from all the writing to take care of me! I’ve been trying to focus on getting better, and so I just needed to take a bit of the extra stress off my plate. Slowly I continue to get over my surgery. When I was at the neurosurgeons office a few weeks ago, he told me that I can expect it to take until Dec or Jan to recover. Good days are mixed with bad but when your fighting chronic illness and CRPS in particular that’s to be expected. I’m taking it one day at a time and doing only what my body wants me to do!
Its been a long road to this point and I’ve been doing a lot of thinking about the direction I’m headed and where I’m at in this very long journey. Recently I was asked to write my story by a friend Victoria in the UK at “Burning Nights” and all that I’ve had to go through in living a chronic life. If you get the chance go over and visit her blog at http://chronicpaincrps.com. As I wrote my story though I began to think of where this road is taking me and how I’m feeling at this very moment. Without a doubt I’ve been through some pretty tough times and gone down a few dark roads. Gods been there however to put me back on the track and keep steering this ship in right direction.
I know I’ve mentioned how I was feeling at the start of my diagnosis so I won’t get into that story. All I’m going to say is that I’m in a different place with my CRPS right now than I was back then. Even trying to push through this healing of my most recent surgery is different because I’m not letting the mental side of things distract me. I push forward and try to make the most out of what I can at this point in time. Something has shifted inside however and I really can’t put a thumb on it. I feel different filled with more fight and passion than I’ve ever had. Passion for what? Passion to bring about change! From the basics of how we live with chronic illness, to the perception of those of us living with it. I’d also like to see government make changes in how they support and care for those living a chronic life. The only way to do that is to be a part of that change! Fighting through advocacy for my illness and other chronic illnesses.
It isn’t that I’m not still dealing with a full plate battling CRPS because believe me I am. Something however won’t stop tugging at my insides, telling me I need to do more and try and make more of a difference in fighting for CRPS and Chronic Pain. I wake up in the morning and go to bed at night thinking of ways in which I can help to make a difference. I am now involved with a Spoonie Comunity that not only supports each other but advocates to raise awareness and drive change! I have now made friends with people living with chronic illness from the all over the world who are fighting for the same cause. If you don’t know what the term Spoonie stands for its a group of people that live with chronic illness. Like I said at the beginning of this post something is shifting and I believe its only for the better. I also believe Gods hands are all over it!
Well here we are thirty days later and its time for a strong finish to the month long Health Activist Writer’s Month Challenge! So today I’ve been asked to write a post that answers the question “what do you wish you had known at the beginning of your patient journey that would have made it easier and less scary”? The answer is quite simply I wish I had known more about CRPS and everything that comes with it! In the following post I’ll attempt to answer that question in detail. Its been a journey filled with surprises and many challenges and had I been armed with information it may have made it easier to transition to where I am today without so much fear.
When I was first diagnosed I remember that first year as my CRPS developed and all the fear and uncertainty that surrounded my future. My CRPS started after a surgery on my left arm, long story short I started getting swelling and discoloration in my left arm. I remeber my journey towards diagnosis when all of this began like it was yesterday. The swelling wasn’t going away and I was being sent to various doctors to try and figure out what was wrong. I remember my wife calling me at work only hours before I was suppose to get on a plane for a business trip, to tell me not to fly as I could have a blood clot! As we found out later it really had nothing to do with a blood clot at all. It was the start of many days ahead filled with fear and questions that nobody could answer.
The first few years before and after diagnosis were scary because nobody could tell me what was going on with my body. Knowing who to see and how to get to them would have made the process so much easier for me. However even after diagnosis nobody really knew how to treat a person with CRPS, let alone give me any information about the disease itself and what to expect moving forward. When I had questions about CRPS it seemed as though the usual answer was ”I don’t know” or “we don’t know enough about it”. If I had been armed with the knowledge that I know now about CRPS and how to try and best treat those symptoms, then it would have taken a lot of that initial fear that I felt away.
Lets face it! Its scary when you don’t know what’s going on with your body! Add in chronic pain and desperation and it makes for a real volatile mix! I spent so much time guessing and worrying about what was wrong with me. Not to mention not knowing what it was going to mean for my future. If only my GP who I was with at the time known something more about chronic pain and CRPS! The least he should of known was who to get in touch with in order to diagnose and treat me. I’m not angry with that physician because he truly didn’t know. It was however frustrating because I had no direction from anybody or anyone to turn to in my time of need.
If it wasn’t for the support of those around me like family and friends it would have been twice as hard to get through those first few years. So in my opinion its really important in those first stages of being diagnosed that the patient has support and information about what to expect and who they can turn to!
Living with a chronic illness you face lots of people who don’t understand your daily struggles. Sometimes because of this people can be inconsiderate and hurtful. Often you want to tell them how you really feel but don’t feel like you can. So today I’m taking the opportunity to do a little venting, which some of you might know that I do from time to time!! There’s nobody in particular that this is being directed at but I do want to say a few things to those of you that don’t understand chronic pain. Just because I have a smile on my face today doesn’t mean that I’m feeling fine, and that I’m not in a great deal of pain. On those days where I might seem a bit irritable the chances are that my pain is probably off the charts! In other words how things appear on the outside might be totally different from whats going on inside me.
Often those of us who suffer from chronic pain conditions are made to feel bad about something that is totally out of our control. I touched on this in a previous post, when I was talking about how physicians and others in health care often tell us that all of this is in our head. To make some of the statements they do when they aren’t the ones living in pain 24/7 is both hurtful and inconsiderate. However it isn’t only isolated to people within the medical community that this happens. I have had people who don’t even know me walk up to me and judge me, all of a sudden telling me telling me how I feel because they know me better than I know myself!
When someone does this I can’t begin to describe how this makes me feel inside. It only makes me want to say “live a day in my shoes” because you have no idea what I go through on a daily basis. Or tie one of your hands behind your back for a day, and see what its like to function doing everything with just that one hand! Not to mention the pain I have to put up with. If you only knew just how much I’ve had to adapt and change my life over the last ten years. Be careful when you judge that person who parks in handicap parking which I know some of you do. I’ve been that person who was judged! I had someone come up to me as I got out of the car and tell me I had nothing wrong with me, and that the space was for people with real disabilities. First of all I have a placard issued by my physician giving me every right to park in that space! Secondly did you miss the cane I was walking with at the time! Last of all you have no idea what might be wrong with me so maybe you should take the time to find out the facts first.
My point of sharing that with you is that words can hurt! At the time I was taken back and in shock that someone would say something like that to me. Here was this man who knew nothing about me yet he felt justified to judge me! Lets just say my guard went up and I had to ask God for grace to take the high road. This happens more often than you would think to those of us suffering from chronic illness. Its hard enough dealing with the disability itself I don’t need people making judgments about me on top of all that. You have to remember that a person’s self esteem has already suffered a lot when they are diagnosed with an illness. So making them feel worse when they are just trying to get through the storm doesn’t work!!!! Think before you make that comment and ask yourself it’s appropriate to make.
I’m not saying that you can’t ask how I’m doing or talk to me about my illness. All I’m saying is be sensitive to what you say. Think about the fact that I have to live with this illness every day of my life and sometimes the reminders hurt more than you know!
Its been a challenging month so far, not only trying to put up a post every day but on the health side of things as well. Today is a free topic day in the WEGO Health Activists Writers Month Challenge. So I’m using today as an update to what’s going on with me at the moment! Today was suppose to be the day that I went back to the surgeon for my three week follow up. As law would have it though an hour before the appointment he got called into surgery and my appointment got cancelled. Not to frustrating! So now I wait again for who knows how long!
Things have been pretty intense as of late when it comes to dealing with pain. My body seems to have a mind of its own right now, and I’m in a little need of some relief. Pain relief hasn’t been great lately, and my sleep patterns are worse than normal. A lot of it has to do with the issues that I’ve been having with my surgery site. I was told however that healing was going to be a process and I’m just believing for that to be the case. Its just that things have kind of come to a standstill as to what the next step is going to be. It might be to have a CT scan done to see what’s going on within that area. Is it muscular? Is it skeletal? Is it CRPS? There are so many questions I have at the moment however until the surgeon and I get together again I’m left in limbo.
All one can do at this stage of the game however is stay positive and keep myself focused on winning this battle. From the start I’ve told you that I’m going to win this battle and I feel more confident now than ever. With everything I’ve had to go through in regards to this surgery I have been given all kinds of reasons that I should be in doubt of things gettings better. So why haven’t my spirits wavered or my strength to keep going died out. God won’t let that happen! He’s kept me strong when I needed it the most and when my spirits take a dip in the wrong direction He picks me back up again. I am so unbelievably blessed to have a God that will be there wherever and whenever I need Him.
I know that lots of you share in my feelings of just not having the strength to keep going at times. Or that you lack the spirit to keep pushing through adversity to overcome yet another obstacle. Its a feeling that leaves you feeling helpless and at times scared turning in all directions for answers. So what is the answer? The answer is to say a simple prayer asking Christ into your life. Ask and you shall receive!
So when I’m unsure about things or feeling weak I ask for what I need! When I’m in need of direction or wisdom I ask for wisdom or direction! Somehow or someway He always gives me wisdom into what steps to take next. The choice is your I can’t make it for you! God never fails to answer prayer and I can give you numerous examples of when He’s answered my prayers to back up that statement. Its makes getting through this mess a little easier when someone has my back, and that is one thing I’ll always be sure of is that He always does have my back!
Its been a really rough day today trying to fight off the pain that’s attacking me. This most recent flare up has been building for a few days now and today I’m feeling its full affect! Its been hard to keep my head in the game today, with pain trying to distract my every move. My stress level is in a good place though and I just need to ride out the storm once again! I just go to my happy place thinking about four months from now when I’ll be resting in sunny Kauai for almost a month!!
Wego Healths topic for today is to talk about my favorite hobbies. I think its farely odvious that one of my favorite past times is photography. There is nothing greater than being able to create a picture that you can call your own. One that nobody else can copy! I have this ability in whatever I’m doing to see a picture develope before my eyes. It is truly something special to see a picture go from something you see before your eyes, to something hanging on a wall. I know what your thinking! Its just a picture! To me however that isn’t the case its an extension of yourself and how you see things through the lens of a camera. I know! Very deep isn’t it!
Most of you here that read my blog already know about my love for photography so I’m going to spare you any more talk about it. With my diagnosis of CRPS I’ve had to adapt to some other hobbies. One of the hobbies however that hasn’t changed is my love of reading. Put a good book in front of me and I get lost in the story. When I get lost in a good book I’m able to distract myself from the pain a bit. There is nothing better than a good mystery! Sometimes however as some of you whith chronic illness may be able to relate to, my fog brain gets in the way and it can be difficult to read.
Travel is another hobby that I love! Mainly because I get to experience so many different places and cultures from all over the world. It might not be as easy with my disability anymore but none the less it doesn’t stop me. Things have changed a little in that perspective as well. When I used to travel I’d get out and about a lot more than I do now. If I can be parked on a lounger with a good book overlooking a crystal blue ocean then its alright by me!!
I guess I have a point in all this. If your hobbies that you once had are no longer because of your disability, find another because there are still lots that you can do in spite your disability. I’m just lucky that a few of the hobbies that I have just had to be tweaked a bit in order to be able to continue with them. Its just another learning curve when your diagnosed with a disability and it takes time to figure it all out but you can do it!
Ok like I said in my last post I’m determined to get caught up and get back on track with this thirty day challenge. So here is post number two for today. How I’ve been able to achieve this today I don’t know. I’m tired in pain and fighting off the start up of another flare up. Like most health activists though you find a way to push on and move forward. So onwards we go! This is day #21 of the WEGO Health Activists Writer’s Month Challenge. Todays challenge is to reflect on my journey. That’s quite the challenge seeing as I have to try and cram ten years into this short post!
Its hard to believe that coming up this fall will be ten years since being diagnosed with CRPS. To say that its been a wild ride is an understatement! The range of emotions that I’ve gone through have been too many to count and the same goes for the number of ups and downs that I’ve experienced. When I look back and reflect there are all kinds of things that I’d like to put behind me and not relive ever again. At the same time there have been some extremely proud moments as well. The low point of all of this had to be that day where I walked out of that doctors office with my diagnosis. I can still remember the day as if it was yesterday, and the anger and frustration I felt as a result.
Keeping with my optomistic or optimistic attitude however I want to say that there have been some great things that have come from all of this as well. First and foremost has been how God has been there from the start. If it weren’t for the support that God has shown me through all of this I would lack confidence but my confidence couldn’t be stronger today. My ability to overcome adversity no matter how hard things get is another. Every time I walk into a trial I know from the start that I’m going to be able to get through the storm no matter what. Through all of this I’ve been able to see a new me emerge. One who’s stronger and more confident about what I can accomplish with my life.
I’ve also been able to establish some great friendships with others who live with CRPS and other chronic illnesses. Without their support I wouldn’t be able to get through half of what I do in managing my CRPS. It means so much to be able to go through this with others who are facing some of the same trials. On those days where its all to much there is always one of you there with words of encouragement.
Living this last ten years with CRPS has opened my eyes and given me perspective into a disease that goes along very quietly to most, yet to those of us living with it the pain and suffering is very real. My hopes are that through all of this that I am able to make a difference in educating and raising awareness about a silent disease that affects so many. Imagine a child having to go through what we have to endure as an adult! Would you want your child to have to live with pain as bad as this? The reality is that its happening and I’d like to see that change. We should be opening more pain clinics and the health sysytems world wide shouldn’t be dismissing chronic pain but treating and reasearching it! In our province they just shut down one of our pain clinics because of funding. That’s a whole other topic!
My hopes and dreams are to see people in positions of authority catch on to the same visions as me. That there would be changes to the health care systems, and that CRPS would be seen for what it really is. We can’t do anything about it if it sits in the closet collecting dust!
Yes this was yesterday’s topic and I’m playing catch up but better later than never! When you have two small kids, a disability, several doctors appointments, and you run a blog its challenging to keep up with a thirty day challenge! My motto is better late than never and I have something to prove to myself that I can complete this challenge. Even if it means that in order to do it I have to write two posts on one day. Which is the case today! The last week has I’ve also been dealing with a flare up and so it makes it extra challenging but I never give up. Keep pushing along and you will eventually complete the race!
The next topic WEGO Health Activists Challenge is if you could travel anywhere in the world, where would you go and why? There are a lot of places in the world that I still want to travel that are high on my list of places to go. However one has grabbed hold of me pretty tight and that is Kauai, Hawaii. I’ve been there once already and in Sept I’ll be returning for almost the full month. When you watch shows such as Hawaii Life they really tell it like it is. They really do have a different way of looking at life! Everything is so much slower and layed back. Enjoying life and family is put first and you can clearly see how this is incorporated into people’s lives there by how they live.
There is something special about that island to me. Although we’ve only been there once it really is all that and more! Its hard to describe but there are miles and miles of white sand beaches, and if you want to find a place to just relax and get rid of all your stresses this is the place. Everything from the lush vegatation to the wildlife that is all around you leaves you in awe of what God has created! As you can tell I don’t have a bad thing to say about this island, as it feels like a second home to me. It helps lift my spirits when I have to deal with my CRPS every day.
The only part of going there however that I dislike is the travel time to get there. From where I live its anywhere from between 12hrs to 19hrs of travel time depending on how you go. So for me that length of time trying to sit on a plane in brutal, but I try and focus on the goal in the end. Not to mention the hassels of taking longer to get through security checks because of my implants, medications, and special things I take. With my CRPS I get a lot of swelling and so with the change in altitude I get more severe swelling. It seems that my affected leg gets a bit worse so I wrap it in a tensor to try and keep the swelling at bay. I already wear an edema glove on my hand so it helps with the swelling of the hand. I notice however the swelling gets worse up the arm as well.
Sure the travel is more of a hassel but if you do the work to figure out how you can make it easier for you then it isn’t as bad. You can apply through the airlines for special medical seating that will give you prefered seating to make you more comfortable. I also do my homework and get letters from my doctors to help get me through security if there are any questions about all the wires and metal I have in my body. I know that for some of you the travel isn’t easy but I say this in all honesty that the travel is worth it in the long run. I come back feeling alive and rejuvinated ready to keep battling!
So just because you have a disability don’t let that stop you from getting out there and traveling to some of the most special places on earth. I might have my own little place I call paradise now go find yours!!
Did you know that April is stress awareness month! We all deal with stresses in our lives but for lots of us who live with chronic illness or specifically chronic pain stress can be a trigger. For those of us who deal with CRPS we try as hard as we can to avoid extra stress because it sets off flare ups. The more stress we have, the worse the flare ups seem to be in most cases! When I was first diagnosed nine years ago I really didn’t understand just how big an impact stress had on my illness. As I became more educated I started to understand that the more stress I had in my life, the worse off I was going to be when it came to dealing with my symptoms.
For those of us dealing with CRPS the greater the stress the more our nervous system wants to get wound up really tight. That tightness that our nervous system experiences translates into increased pain as I mentioned before. Stress however isn’t always as a result of a stressful situation, it can be anything that tenses up your nervous system. So for me it can be large gatherings or noise that fire up my nerves and make my stress level worse. Pain then feeds off of this and it just sets off a chain of events that just keep snowballing.
In order to escape that stress I had to find ways in which to take my mind off the various triggers that cause the stress in the first place. So for me dealing with it was to isolate myself in ways where it didn’t allow stress to creep in and set off that chain of events. When it came to family gatherings it meant limiting things to a certain amount of time or picking and choosing the things I do to avoid extra stress. When it all gets to be to much then I have to isolate myself away from everyone, where I can allow peace and quite to replace the stress that my nervous system was experiencing. Often I will use music or deep breathing excersises to do this. It isn’t always easy to get things to calm down but it can but if your persistent and do this on a routine basis then your nervous system can responds to it.
So how do I escape stress? My love of photography! Its the perfect distraction from my pain. When I get out there with my camera I get lost in what I’m doing, and there isn’t a stress in the world. For half a minute I’m able to cast aside the stresses, and try and forget about the daily pressures I feel in dealing with chronic pain. Or the doctor’s appointments that happen every week. Its a chance to spend some time alone and just forget about everything best I can. Its stressful in itself dealing with all the day to day that you have to when you live with CRPS!
Is there and easy escape? I really don’t think there is because of the type of illness CRPS is. With your nervous system always running at a mile a minute its hard to calm things down and calm things. After the same time I do think its possible to distract yourself and bring the stress down. Things that bring you lots of happiness and joy from within are great distractions. Sometimes its just a matter of getting out there and trying different things to see what works. The one thing I do know is that you will never figure out what works for you if you don’t try.
For those of us who live with chronic pain or chronic illness there are lots of ways to reduce stress. Once you’ve found what works for you then its a matter of building it into your lifestyle. It may not bring results overnight so you have to stick with it and see the long term results that can happen. Believe me when I say that finding things that work for me have helped me a lot in how I’ve been able to successfully control my stress level better than I did!