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!
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!