Robin’s declining strength and stamina at work served as an alarm that something was wrong. It took three years, however, to identify what was causing these feelings of weakness and exhaustion. Here Robin shares the perspective gained from this long process — and wisdom that might help others seeking answers to health concerns and how to live with them.
“Something Wasn’t Right”
I was a Corporal in a County Sheriff’s Department, a position that takes a lot of stamina and brute strength. I was stationed in the Booking room and [needed to] be ready and on alert because in a split second I might be needed to respond to fights, assaults, intoxicated individuals resisting intake, officers needing assistance, etc. Strength and stamina was needed to work ten-hour shifts, on your feet, never taking a break.
A trip to a PA changed everything for me. I was requesting that my testosterone and other hormones be tested to try and explain my exhaustion. One blood draw and the results came back positive for autoimmune [disease]. It had taken me over three years to get the answer to my health issues.
I am currently diagnosed with connective tissue disease, scleroderma, fibromyalgia, rheumatoid arthritis, occipital neuralgia, migraines and headache syndrome.
Too Many Solutions
I was originally drowned in prescription meds upon diagnosis, which ultimately ended up making me feel so much worse than I had before being diagnosed. I had to do some serious research on my own and become my own health expert. I had to be the one that advocated for myself. No one else was going to do it in a way that had my best interests at heart. I did so much research, it was unreal.
I came to the conclusion that some of the meds I was prescribed were just not helping and in fact, were adding to my symptoms and pain. I had to cut out the meds I didn’t feel were necessary at the time. (I discussed all of this with my rheumatologist.) After that, I began to take vitamins and supplements that my research showed to be of benefit.
Being my own voice, taking an active role in my health care has been the biggest comfort of all to me. Playing the guinea pig and taking every med prescribed for me did not help my health, and in fact made me feel sicker.
Pay attention to how the meds make you feel and be willing to try other routes for health benefits. Be open-minded, but never jeopardize your health.
Be your own advocate, voice and medical expert. I wouldn’t necessarily suggest walking in and playing Doctor Google or anything, just be informed so when a treatment is suggested, you can aid in the decision of if it’s right for you or not. Learn what questions to ask, research other forms of treatment such as herbal or holistic and be your own voice at all times. If you are not being allowed to take part in your medical treatment, then find a new doctor!
I read everything I can find about my health conditions. I join social media groups so I can learn from others that are also dealing with the issue(s) I am. I read research papers and findings about my conditions on the John Hopkins online site, and I just make sure I keep myself “in the know” as much as possible.
My symptoms change, so my approaches to my health care [do as well]. Some vitamins and supplements that are recommended for a condition I suffer from may not work for me, so I will try other supplements or holistic approaches as my health changes.
I will never, ever say that I will treat my conditions totally holistically, as I find medical treatments to be crucial in some instances, but in others, holistic or herbal may work better at the moment.
Conserving your energy when you suffer from multiple conditions is imperative! If you are not familiar with the “Spoon Theory,” you should research it. You will have a limited amount of energy at any one time and prioritizing how and where you spend that energy is key.
Sometimes the energy will just not be there and you will have to choose to not give away all you have. Take a nap, soak in a bath, read a book, take a walk … do what you feel your body telling you to do.
Take time for yourself! This is a hard one for me as I am a “people pleaser” and my life has been spent in the service of the family and friends I choose to care for. Learning to step back and say “NO, I cannot do that/will not do that” is very necessary.
Ask for help! If you just do not feel up to doing something, ask for help. Let others care for you sometimes, even if it’s not your nature. Learn a new you, one that conserves their energy, focuses on the important things and lets the other things go, lets others help when needed, and listens to their body when it’s telling you what it needs.
Live life every day, even if it’s just a few short minutes. Be happy, don’t stress over the things you cannot change. But if you can make changes that help, make them!
Life is short. You must do your best to keep living even when suffering from health issues. You may not be able to hike to the top of that mountain or run that marathon, but you can find things that bring you happiness and fulfillment. It just takes a little adjusting!
Lives with connective tissue disease, rheumatoid arthritis, fibromyalgia, occipital neuralgia, migraine, scleroderma, headache syndrome
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