What Living With a Chronic Illness Makes Me Appreciate
Something a lot of my Mighty friends and I often talk about is how the different lives we lead make us savor things more than “normal” people.
A shower, something most people do without thinking each day. It has been years since I was able to take a full shower. A luxury I truly cannot afford, but something I would savor so much. Hot water washing off and away the struggles of life, solving all of life’s problems with the steam making the rest of the world seem far away. Even just washing my face in the warm water is something I would totally consider paying for.
“We always want what we can’t have,” goes the saying, and it is pretty spot-on when it comes to humans. Those who struggle intensely often savor the tiniest of things to keep them looking toward the future. Many things others don’t think twice about, the other side of the population desperately wants. Life is a gift — something I have learned in my tumultuous 25 years.
Living is also a gift. Each second pain-free was a gift, too, and while I thought I savored it, I wish I would have been able to savor it 50,000 times more. I can faintly remember taking showers before school. Running, skipping and even eating without the misery I have to deal with now when I chew and swallow a little bit of a cookie. No longer is a simple treat worth it. Food was the one thing my pain hadn’t touched. I am so glad I savored it when I did.
I daydream about driving just down the block to get the mail or running laps like I did as a teen. The knowledge I have gained over the last eight years since I graduated has almost nothing in common with people my age. So much medical knowledge rattling around in my mind, I half-wish I had a degree to go with it!
We often want what we can’t have, if only we could truly savor what we do have and look inward instead of outward. That is a goal I have had and kept for many years to this day.
Hope for a better future, but no daydreams of a better life to distract from the now as I steer my walker slowly to the kitchen for my one meal of the day. Savoring my ability to choose between breakfast cereal, even as I forget where we keep our bowls that have been in the same cupboard for the past 23 years. Be grateful for each little thing you have. You don’t want to miss it once it is gone.
Unsplash image by Zoe Fernandez
I have dealt with pain for 17-almost 18 years already, passing the half-my-life-with-pain mark now being 29. It started with me being born with twisted leg bones followed by discovering this at the age of 13 after pain in my knees from my twisted bones grinding on them. 2 years later I had waist down reconstruction surgery. The left surgery went well. The right surgery did NOT. Epidural didn’t work (later finding out it was because of my Ehlers Danlos Syndrome) and my nerves were rewired from the extreme pain via my bones being broken and twisted to straighten them. I was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS) which was full body-extremely rare. I learned to ignore the pain so I could try and live a normal life, but it got so bad my hands no longer would work from the excruciating pain. I barely made it to graduation, failing my last quarter of school. Luckily my ranking was 4th so I still graduated with extreme pain and with help from others who had to write for me. Pretty quickly I was bed-bound and dreaming of hospitalization so I could have strong medication to ease my molecular deep ache. Severe Plantar Fasciitis kept me avoiding walking at many costs. Flash forward to 3 years later when I was miraculously healed over-night. I thought I was free and worked on gaining back all my muscles that were atrophied. But then my pain came back and began rising ever higher with many more complications taking over every bit of my body. I joined this site for freedom to express my struggle held deep inside for so long with a smile on my face and not even my family knowing what I went through. I never realized how glorious it was to be open and now I refuse to go back. My sense of peace demands to no longer have a fake smile on my face. I am now diagnosed with EDS, AMPS, Fibromyalgia, Hypothyroidism, Severe Insomnia, Asthma, Hypersomnia, Lymphedema, Chronic Fatigue Syndrome, PTSD, Scoliosis, Sciatica, Bone and Shin Splints and recently promised that I will soon cross the line and be diagnosed with Juvenile Arthritis. It is SO freeing to know that the reason for all of my pain is because of my many overlapping diagnoses. I am currently working on filing for disability and have lost my dream of Interior Design to keep me warm. Also dealing with blisters covering my scalp and making it ridiculously tender with serious GERD and acid reflux problems due to the EDS. Constantly focusing on not throwing up each second is my new normal. Swallowing 10 times per first swallow is becoming habit. Psoriasis and Eczema now are hitting me harder than ever. I walk like a 96yr old woman and hurt so much worse. Only recently did my new rheumatologist pinpoint my last pain diagnoses as being Spine Arthritis, Psoriatic Arthritis, and RA. At long last I have found a home health company that save me pain and energy by coming to my house for appointments. It is ingenious and such a blessing! My new PCP is a brilliant and knowledgeable woman who actually cares for her patients! She wants us to live our best lives and works hard for it to be so. Thanks to her I now also have a pain doctor who CARES and is not afraid to help his patients live their most pain-free lives!!! He is SUCH a gem like her! It almost 18 years to find these blessed doctors. The biggest lesson I have learned is that my happiness is vital and if I have a doctor that isn't measuring up, drop them ASAP! Life is too short to suffer at the hands of others-especially when we are paying them to supposedly help us! It isn't worth it but YOU ARE! Finally in a place in my life where the future looks bright and I am excited for the challenges, as I know my health loves to constantly cause more pain and troubles like my Major Depressive Disorder, Psychosis, and Anxiety. I have been given a VERY complicated and Unique body that I choose to have as I know it better than anyone else. It is mine and we will learn to become a team though it may take a lifetime. I will never give up. No matter what I will fight on! Just as I have these long years, savoring each moment and smiling at each thing that lifts my burden a little. Life should be cherished, no matter how pain-filled. And with The Mighty at my ruined and failing finger-tips, I will carefully walk into the world with my shoulders back, face to the sun, and hope in my heart with a wish to lift a few fellow down-trodden. We got this!!!!
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