Most people comment about my strength, how well I handle my RSD. I wasn't always this strong. There are many days when I just don't have the strength to do more than the bare minimum. There are times when I feel that darkness closing in around me and that is the moment where I stand back up to defend myself. I know what it feels like to succumb to that darkness. It is not a place I would like to visit again.
What keeps me strong enough to stay away from the darkness? Despite the despair of pain I appreciate the amazing family that surrounds me. I feel their love and support. More than that I know in my heart that they deserve the best I have to offer. Sure, there are times that my best falls short. I live with my guilt that I can never give them what I believe they deserve but that will not stop me from trying my best.
Unfortunately too many people with RSD struggle with finding their strength to fight, to stay out of the darkness. I have said it before and will say it again, the key to fighting RSD is a strong support system. Love is a powerful four letter word. When it is given unconditionally a pain sufferer can find their strength to fight back. If you know someone who has RSD please take some time from your own busy schedule to provide some sort of support. You could give any type of help. An ear to listen, a hand in doing dishes, time out of the house to help against the sense of isolation. A home cooked dinner, offering to take the kids to a function, a little text to check in if you haven't heard from them in a while. There are many ways to help depending on your level of relationship with the RSD'er. What is most important is that you remember that this is not a short term illness but a lifetime journey. What I mean is, if you haven't specifically given support to your loved one in a few years then maybe you could step up your game? Their battle doesn't end just because you once went out of your way two years ago. Too often people who suffer with chronic pain feel like they are unable to open up because quite frankly no one wants to talk about something so depressing. We need to open up but we don't want to be your buzz kill. So, let us know you are thinking of us! Start the conversation or better yet include us in something. Nothing says "I support you" better than planning your next evening out around your friends disabilities. You will be amazed how your show of support will renew your loved ones ability to fight their battle.
My will to fight also gains strength from finding purpose. Being disabled from work can be very self defeating. One day you are healthy and active then the next day finds you unable to do the things you love, things that you took for granted. I have often had conversations with people who are basically healthy complain about how hard it was on them when they had to stay in bed for a few days or weeks due to an acute injury. They talk about how hard it was on them to not be able to take care of themselves, to rely on others, to loose their ability of simple tasks, and then of course how they would go out of their mind if they were not able to do their favorite physical activity! Yes! I get it! Exercise is proven to lift endorphin's which improves mood and outlook on life. It is almost impossible to exercise with RSD/CRPS, depending on the part of the body afflicted with this disorder. I have great memories of spending my weekends roller skating and riding bikes but those are both activities that I just cannot do anymore. It can be depressing thinking of all the fun things you used to be able to do. That is why it is important to find sedentary activities to occupy your time. Many RSD'ers find a great mental escape through the internet with the added bonus of finding a support group online. I like books, watching movies, playing games that strengthen the mind, and writing in my blog. My personal favorite is doing activities with my kids! Still, when my pain is flaring I tend to stay either in my bed or on the couch avoiding most activities. This is the time that my mood gets a much needed boost by the most simple things in life. My childrens laughter, my husbands kisses, a text to make me laugh from my best friend, a phone call from a loved one checking in on me, or a sweet escape via a movie or book. I am guilty at being a pleasure eater. Admittedly I like to eat my pain away. I enjoy food which has lead me to a great activity to fill the void. I have been honing my skills in the kitchen. I love food and I love to cook. There are many times when I am unable to cook for my family because of the pain levels. Often it is the first task I choose to do when feeling any level of relief. Cooking brings me peace and fills my need to be creative while taking care of my family.
About six years ago I went through a physical therapy regime. Part of the process was talking to a therapist and learning relaxation techniques. In my first meeting with the physical therapists I was told to have realistic expectations regarding what I was going to get out of the pt. The point of the PT was not to help me be able to exercise or run a marathon. The point was to increase my ability of self care and household routines. I learned a lot during those few months in therapy. Some of the methods have become ingrained as a normal process; the golfers lift for laundry, the log roll to get out of bed, meditation for relaxation. Physical therapy might be a pain in the ass but it is a necessary evil. The key to making the most out of it is finding someone who is well versed in RSD/CRPS so they know how to back off when the pain becomes overwhelming. It can be very defeating if your therapist is harsh towards you when you cry. On the other side of this coin however you do need someone who will push you hard enough to help you get stronger. It is a difficult balancing act but a necessary one.
Inspiration. A reason to fight. Why bother?! Why bother shaving your leg when that vainful action will bring you to tears? Why bother showering or fixing yourself up? Why bother getting out of your pajamas when you plan on staying in bed all day? Shoes hurt your feet and don't leave room for when your foot swells, so why bother? You can easily lose your will to fight with RSD/CRPS. If you were sick with the flu no one would blame you for not showering, changing your clothes, or getting out of bed, right? Is there a difference? Yes, there is a huge difference. The flu will only consume a few days of your life but RSD is forever. When learning to fight this disease you need to first have the will to fight it. Don't make yourself feel guilty with a long list of who you think you are letting down. Start off with one item on your list. Yourself! Welcome to your new normal and find a life for yourself within it. Give yourself one task to complete and grow your list after each accomplishment. Forgive yourself for the days you fall short. After Gabriel was born I used to beat myself up emotionally for the days I could not take him to the park, play on the floor, or give him a bath. Having those things would have been great but he still had a great childhood. Instead of going to the park I would watch movies with him, cuddling on the couch. Instead of playing on the floor I would read to him, book after book. And he really didn't need a bath every night! Guilt over something you cannot change is a kick in the stomach but we need to forgive ourselves. My family loves me and does not hold it against me for the things I cannot give them. Sure, there are times when they are emotionally charged and hate how the RSD takes so much away from us. If your family has not yet found that understanding then they simply need more education about RSD/CRPS. We are all on a learning curve.
Personally, I never discount the power of prayer. I don't care what religion or belief system you have. Mine is based in a loving God who helps me find the strength to continue my fight. About 6 months ago I began to sing in my church choir. I grew up singing in the choir of my childhood Church. I stopped singing when I began my family but I have always found spiritual peace through the music. I am glad it has found a place in my life once again.
While many people admire my strength and courage for living with this pain they unfortunately have never seen what it is like "behind the curtains". Learning to fight RSD/CRPS takes guts and time. It takes support, education, purpose, therapy, inspiration and prayer. I have been on this journey for 19 years and I am still learning. These are just some of the key principles I have adopted based on my personal experience. Hopefully I have helped others with their fight.
