People ask me sometimes “how can you do this? How do you do that with systemic/full body CRPS and several other high pain illnesses ? How can you go here & there when you’re in pain & you don’t feel well? Don’t you get so very fatigued”? I have had other chronic pain patients accuse me of “not having pain as bad as theirs”, because I try to do different activities. Yes, I’m in pain daily, whether I stay at home or if I go and do a little something that will either make me smile; or where I can make someone else smile. My pain is not me and I have choices to make. I can choose to use just my cane, walker, motorized scooter or my wheelchair. But every day that I am alive, I try to do something, anything. I don’t believe in letting the days go by without experiencing the taste, feel, touch, smell, sights & any sounds possible to enrich my life in any way that I can. As recently as this past Summer 2016, I was diagnosed with S.I.B.O. and Gastroparesis. These make eating unpleasant and going out for dinner almost impossible. But you notice that I say “almost”, because I still choose to go out to eat as a social experience with my husband and/or friends. I just choose wisely or have something to drink. I try to convince myself that it’s the experience of getting out and getting up.
Yes, I’m in pain and even the medications don’t take that away completely. Secondly,”yes”, I am exhausted after an outing, but it’s worth it because my bed, my chair and “my comfortable place” will always be there when I cannot do it for another moment. But my husbands hand, my (2)daughters love, the giggles, smiles & sweet hugs of my granddaughters; they might not always be there! I refuse to let fear, pain & fatigue ruin or rule my life! There are those days that I do take to my bed or the couch….but those are resting days, in between the good stuff!
I have lost family and many friends, due to the fact that I may have to change plans at the last minute. As I write today, about trying to go places and do a few things that are enjoyable; I must reiterate that I do have to listen to the chronic fatigue and pain when it tells me that I must not do another thing. When it lets me know that I’ve “used up all of my spoons for the day (see the “Spoon Theory here:https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) and it’s time to stop” (for now). We all have to listen to our bodies, meaning that there will be days and maybe several in a row; when we are unable to do something notable. But if I can’t go out, I do try to at least mingle or socialize each day to keep up my spirits. Some days it is via social media and the support groups that I run. Other days it can be hanging out with my daughters/granddaughters; or just sitting quietly with my kitty cat on my lap and my husband reading next to me. I just try to do at least one small “social” thing daily. Every person has their own way of being content or even happy. Some like to do Yoga, others enjoy reading or going shopping. I just try to do anything, no matter how small it might be; each day. Some days taking a shower and doing my hair is my achievement. If that’s all I can do on any given day, I give myself credit for doing “something”. It takes so much out of us, just to shower and do our hair and/or makeup. It’s incredibly exhausting when you fight daily pain/fatigue. Persons who don’t understand chronic pain would not be able to understand it.
I refuse to let the “bad stuff” rule my life! I might get sad or down like everyone does from time to time; but then I pick myself up by the bootstrap and try again in a few hours, tomorrow or a couple of days! Pain and fatigue will try to win my battle but My heart and soul will win the war!
*Written by Suzanne B.Stewart- 6-11-2016 (chronic pain patient with severe systemic CRPS, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease, PTSD, A-fib with pacemaker for Sick sinus syndrome, long QT syndrome, Asthma, Dysautonomia/POTS, CKDII, Arnold Chiari Malformation I, long thoracic nerve neuropathy, h/o CVA & M.I., Degenerative Disc Disease, Rheumatoid & Osteoarthritis…plus multiple injuries/surgeries s/p a MVA in 2002- including a TBI & 3 yrs of TBI rehabilitation!)…
**I am a Health Advocate/Activist, Chemo-angel, card angel, prayer angel, special assignment angel, -Mentor for Newly DX CRPS patients, blogger/Writer, …..