As my husband facilitates ideas to make my life easier in the house, I have been adjusting and attempting to modify my attitude. May 5th marks one year since my Rhuematologist officially diagnosed me with PsA. The Fibromyalgia determination came just two months ago. Being pronounced with autoimmune diseases is kind of like running a race without a finish line. I spent a long time trying to find out what was causing the pain and fatigue, only to discover there would never be a means to an end.
Thus begins a process much like grief:
Thus begins a process much like grief:
- Denial - Much like when I was diagnosed with depression, I just shook my head when it began to soak in that I had an autoimmune disease. So much so, that I refused to take the meds and began reading everything I could get my hands on that would discredit the diagnosis. Methotrexate? No, thank you. A chemo medicine for arthritis? Are you crazy? The realization that my doctor might be correct in his conclusions just spiraled into a slow burn of fury. Why me? I was mad!
- Anger & Bargaining - Infuriated even! When my now adult daughter was diagnosed with Juvenile Rheumatoid Arthritis at two years old, I felt so helpless. Negotiating with God, I asked Him to give me this horrible suffering and take away her pain. Little did I know, I would find my way down a similar path as my baby girl. Not only had she suffered as a child, she continues to fight this brutal disease with infusions every four weeks. I join her sometimes, depending on scheduling, as my infusions are every six weeks. I felt bitter and isolated with my situation. Why had God done this to my family? The word Karma even entered my brain. My irritation blended with sadness and suddenly the world felt so heavy.
- Depression - I have lived with it my whole life. Hiding in the wings. Smiling in public. Medication. Therapy. Psoriatic Arthritis brought depression to a new level. The fatigue made it easy to slowly simmer and stew in the pain. I wore a pathetic cloak of hopelessness that would overshadow the positive inclination inside of me screaming to get out. It was cold outside. I hurt. I could not accomplish much of anything. I felt guilty for doing nothing... then, a miracle.
- Hope - I was blessed with the resources I needed to pull myself up. My faith. Like a warm, cozy blanket, I felt wrapped in His love and this comforted me so much.
My GP worked with me on the appropriate medicines to cope with the darkness. My therapist shifted my being by suggesting I focus on change and all that it brings because it is all we ever really can rely on. In an attempt to stop the joint damage I am experiencing, my Rhuematologist has pushed to get the best medicines approved by my insurance company. Finally and most importantly, my husband, Steve has been my rock. At some point in this mess, I realized I had my own posse. A tangible group to reach out to for support. The big step was plugging in. The help is there. - Acceptance - The biggest and hardest part of all. Acceptance is a daily walk. My perspective has changed. My illness has not. It still ravages my body every minute. The difference is my coping skills have changed.
My therapist, Elaine, would be so proud!
My perspective shifts and coping skills are many and they change daily.
Here are a few:
Here are a few:
- Be kind to yourself.
You deserve gentleness in your life, so begin with kindness. - Life is not perfect.
Your house won't be either. I have relaxed my standards tremendously in this arena.
I try to do one significant chore per day. Clean the toilets. Vacuum a rug. Steam a section of floor. Sometimes making a cup of coffee is truly all I can do and that's ok.
(refer to number 1.) - Make life more efficient.
Chores will be harder. Buy gadgets that make them easier. Buy the chopped onions, green peppers, mushrooms (or whatever you would normally chop) from the freezer section. Survey your home and consider the modifications you or your spouse/friends/family can make or help you with to make life run more smoothly. - Ask for help.
This one is tough. I know. Just humble yourself and do it. My daughter has JIA. She went to her management team at work and explained her issues. They provided her with a chair at the customer service desk! Do you have teenage kids? Built in help! Have them invite their friends over for pizza. Provide the buckets and sponges for them to wash your car. Have one of them sweep the porch outside. Be creative and consider the offers people have already made that you may not have accepted yet. Whatever you need to feel accomplished without utilizing your precious energy. - State your case.I just put it out there. When necessary, I tell people I have three autoimmune diseases that rob me of my energy and mobility. I receive infusions in an effort to ease pain and stop damage. My energy is precious at this point in my life. Enough said. Anyone who gives you grief instead of support should go to the bottom of your give a shit list. They are zapping your precious energy.
#Psoriasis #PsoriaticArthritis #Fibromyalgia
It has only been a year since my diagnosis of PsA, and I am sure I will encounter more challenges and experience more miracles. I do believe that is the key in any tough situation.Having hope and staying open to change and possibilities. It is really all any of us can do, regardless of the things life throws our way.
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