Let Us Know That Our Capabilities Are Enough
Written by Shannon McMullen for the RSDSA blog.
How and when did you develop CRPS/RSD?
I developed CRPS about three and a half years ago after two left ankle sprains led to a bad case of peroneal tendonitis. We now know that EDS also contributed to those sprains not healing. I went through physical therapy, aqua therapy, MRI’s, X-ray’s and eventually was immobilized, which really led to the CRPS symptoms coming to light. Within a short time, it spread throughout my body and I began to experience some other symptoms, like nausea and dizziness.
I also have Median Arcuate Ligament Syndrome, which caused a compression of my celiac artery and damaged the surrounding nerves, causing severe GI pain and symptoms.
What has daily life been like since your diagnosis?
Daily life has certainly changed; I have had to adjust to life at a different pace. I have had to change toxic practices I had before getting sick, like not resting at all, not taking in every moment, and going at a pace faster than lightning. I also had to learn to advocate for myself and accept that things are not always in my control. CRPS has caused my college journey to look different, but I believe that I learned things on the journey that a classroom or professor could never teach. Things change over time, for better or for worse, but I am constantly learning and trying to navigate life with daily symptoms. I struggle with feeling like it is one thing after the other, but truly taking it one day at a time has helped me a lot.
As a Christian, I feel I am able to connect to Jesus and His suffering in deeper ways. I have developed a strong stance on the way communities of faith can be more inclusive and aware of disabled and chronically ill people, and I enjoy conversing with others and bringing awareness to this issue.
What is one thing you wish those without CRPS/RSD would understand?
I absolutely love this question. One of the biggest things I would say is that if you have questions or want to know how we are doing, just respectfully ask. It absolutely makes me so frustrated when people make assumptions or go around the subject. However, note that “how are you doing?” is a gateway to us lying about how we are actually doing. Consider asking other things, like some recent highs and lows or how has our emotional health been holding up.
On that note, I want to add that we want to be able function and be like an able bodied person. This means that we will try to do things that our bodies will not approve of. Please be kind and let us know that our capabilities are enough, however it may look like for us, even if they change daily.
What advice would you give to newly diagnosed Warriors?
You are probably feeling like you have been thrown into a new reality where little makes sense and everything that was familiar feels anything but that. My best advice is to connect with others who have CRPS. Search the hashtag on Instagram, reach out to organizations like RSDSA, whatever you have to do. Know that there is hope and what you are feeling is valid; there are people who understand it and are living it too.
Reach out- you might meet some of the greatest friends you will ever have.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
I know you are exhausted. In fact, I do not think exhaustion is a strong enough word for the burn out, fatigue, and emotional effects this disease has on your life. The way you continue to take it one breath at a time makes me so proud of this community and our determined spirits. It is not easy to deal with this invisible flame and all of the things that come with it, but do not neglect your mental health. Over time, symptoms and situations change and in the moments when reality just hits hard, remember to be kind to yourself.
What activities or treatments have helped you find temporary or long term relief?
I found some relief by taking turmeric, using a compounded pain cream from a special pharmacy with gabapentin, clonipin, etc, in it. I also got a lot of relief from the Spero Clinic in Arkansas and vagus nerve work. I think it is really important to find a physical therapist who is experienced. I have done some work with helping a tight peroneal tendon that was exacerbating my CRPS pain and reducing my range of motion.
I think it is important to have an activity to put your energy and feelings into – craft, instrument, writing, blogging/vlogging, or exercise.
Anything else you would like to add?
Find your people. As cliche as it sounds, make friends with people who get it and talk about other things. I truly believe that CRPS gives you a unique perspective on life and being able to connect with others.
Rest is important, and others do not have the power to tell you that you are lazy or rest too much. You are managing a challenging disease that has many invisible and visible effects, and your body is working very hard. Give yourself to rest physically, emotionally, and spiritually. They are all connected and you deserve it. Rest is not wasted time.
The pandemic has given everyone some small insight into the lives of chronically ill people with health affecting daily activities, not able to see friends, and the isolation it causes. I believe we can use this experience to show people how CRPS affects our mental health and seeps into just about all aspects of our lives. Though it is only a small bit of the experience, it can be used to show others that some people won’t have a “return to normal” with never having to think about health again. For some, it is a daily reality in many different forms.
You have to be an advocate for your health. In all honesty, being rare can be exhausting. Sadly, you probably already know that some doctors will not know CRPS, and I highly recommend developing your own brief description of the disease that will allow others to have a basic understanding. You will learn when to walk away from a doctor that is gaslighting you and how to share symptoms effectively, although it is a constant journey of growth. Being rare is exhausting, but know that you are doing great and have some incredible critical thinking skills that only chronic illness can teach you.
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