Fear, Terror and Moderation in My Life With Chronic Pain
I am writing this because of that fear inside so many of us. That fear we will die with a smile on our face but deep down we are most definitely not smiling. That knowledge that no one will ever know what our real struggles are that make us sob into our pillows at night, muffled by a silly little sliver of pride we have keeping us from collapsing into a puddle when a stranger asks us how we are doing today. Our real selves beg us to answer with a true cry for help, for a little bit of mercy and love. But we don’t. After all, at least we still have our pride.
Or do we?
Isn’t it curious that the exact definition of pride is a feeling based on achievement, or at least the illusion of an achievement?
All through high school I suffered in silence, not even daring to whisper to my own family just how bad things had gotten. Every time my pain got so severe I would drop things because it hurt too bad to hold them for just one second longer, I would laugh it off, joking about how it slipped. But that fear burned brighter. That terror grew stronger.
I knew my body was no longer under my control. I never had any control; I just thought I did. All the accomplishments I knew I would achieve in the near future became confined to my single self. Each step I could talk myself into was an achievement for which I would have no tangible reward to broadcast to the world with triumph on my face. But I was proud. I was so proud of myself for making it just one step further when I and I alone knew how much pain and turmoil I faced every minute, second, millisecond.
But did I actually gain anything?
As many of us with pain and bad health know, people get tired of hearing how bad it all is. They will never admit it to everyone (maybe just us) but they get tired of hearing the same old things. Heaven knows we are so very tired of feeling and dealing with it ourselves. They may ask what they can do to help, but you know they don’t mean it.
It often isn’t easy for us to admit things are bad either.
Last night while on my sleeping medication I foolishly tried to carry something from one side of the room to another and of course, my grip failed and it spilled all over my whole room. I had to clean up, which of course I couldn’t do because once again, my grip is failing me. It took me all that day after to clean it, focusing with all my might on clenching my hand to hold the rag so I could scrub. It took exhausting willpower I don’t have the energy for in the first place.
I know the terror of knowing you are losing yourself again and again. And it doesn’t matter if you get a bit better tomorrow, in a while you will worsen again. Change is constant.
Health struggles can knock any person down a few notches. Is it really worth our pride to hide these struggles? Is it really worth our sanity to tell all and have our incredibly difficult struggles possibly belittled?
I believe the answer is moderation in all things. Vent, express, feel. But then pull yourself up and carry on. Nothing ever got done by working too hard or working too little. “Just enough,” I whisper to myself.
Just enough.
Getty image by Grandfailure.
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!!!!
tierradrollinger23