By Melissa Wardlaw.
It has been 16 years now that I suffered a life-changing spinal cord injury during an epidural steroid injection procedure that went wrong, thanks to an incompetent doctor. I have been to heck and back, on a medical journey I wouldn’t wish on my worst enemy. But I have finally gotten into a rhythm – I’ve found treatments, medications and coping mechanisms that help to better manage my pain/symptoms. Sometimes I feel the best years of my life were wasted being mostly homebound and bedbound, but all the time they were preparing me for living and SURVIVING with CRPS/RSD (and multiple other chronic illnesses). If I could go back and give myself some advice, it would be these things:
1) Calm down! With CRPS/RSD, our nervous systems are in overdrive and malfunctioning 24/7. The pain is so intense and new symptoms are popping up everyday that make you feel as though your body is betraying you. None of it makes sense. The stress and anxiety (both physical and emotional) caused from all of this revs up our nervous systems even more, which causes even more pain and symptoms, which in turn causes more stress and anxiety. Thus a vicious cycle ensues. As difficult as it is, the more we can calm our bodies and minds down, the more successful we will be in making strides to manage our illnesses.
2) Accept that your life has changed. For many years, I was stuck in the “fix it” mode. I wasn’t going to be satisfied with anything less than a cure, and getting my old life back. That was my ONLY goal. The reality with CRPS/RSD is, it is incurable. Most likely you will deal with it your entire life, and the sooner you recognize this and work towards realistic goals, the sooner your situation will improve.
One of my favorite quotes is, “Hope is the enemy of now.” What this means is that by “hoping” you’ll wake up and be cured or “hoping” your CRPS will go away in two years, you are putting faith in an unknown. I’m not saying you shouldn’t have hope or faith, please don’t misinterpret the meaning. But by believing in an action that likely won’t happen (such as you will find a cure for an incurable illness), you avoid dealing with living your best life NOW – you avoid managing and living with your pain/symptoms NOW as opposed to just existing in the hope that a better tomorrow will come. I know you’ve all heard the quote by Bill Keane, “Yesterday’s the past, tomorrow’s the future, but today is a gift. That’s why it’s called the present.” Treat today as a gift and do all you can to embrace it, just as it is.
3) You don’t need to try every procedure, treatment, medication, (etc.) known for CRPS! In the beginning of my diagnosis, I couldn’t try potential solutions fast enough. You name it I’ve tried it, at one point even putting myself through 12 invasive ECT (electro-convulsive therapy) procedures under anesthesia – not for depression, but for pain! What did all these invasive procedures do for me? Gave me MORE PAIN, not to mention permanent side effects such as memory loss and the like.
As mentioned, with CRPS, because our nervous systems are so overstimulated already, additional poking and prodding will only work to stimulate our nervous systems even more! That’s not to say many procedures don’t work because they do, but make sure to take your time. Thoroughly research every treatment and procedure you do, and take stock of how they impact your pain and symptoms before moving onto the next. And whatever you do, don’t ever let anyone talk you into a treatment with which you are uncomfortable. It is YOUR body, and often times with CRPS the patient knows more than the doctor anyways.
4) Don’t let the pain control you! This is a big one. For years, I heard the term, “there is a difference between living with pain and suffering with pain.” I never quite understood what this meant but I do now. Pain is its own animal – it will take and take all you let it take. Viewing the pain as something that simply “is,” and working with it, as opposed to fighting it every step of the way will go a long way towards managing it. This is easier said than done but when your pain is screaming at you to give it attention, acknowledge it – but don’t feed the beast.