I have been diagnosed with Ulcerative Colitis, Rheumatoid Arthritis and Fibromyalgia. I kep a journal to vent my feelings and experience as an autoimmune disease patient.
I got a visit from The Rheumatoid Arthritis Fairy Last night. My ankles are very swollen and painful. You know, I kind of got used to the level of daily pain and suffering. I knew that I get exhausted and have to nap in the middle of the day to keep my pain down. I know that sometime in the afternoon my pain increases and keeps on getting worse as the hours wear on. I am accepting of that to a point, it’s how I have been rolling. Now that I am weaning down the prednisone (steroid that acts as anti-inflammatory), I am experiencing more pain and swelling. It is like the RA is off its leash and just free to cause me more mayhem. So my knuckles, wrists, elbows, shoulders, hips, knees and ankles are now swelling and painful. Walking is tough. I look like a penguin, waddling my aching fat ass around.
This is new and it is more pain to deal with. I am not so accepting of this. I am angry, frustrated, and in general the description is: “as miserable as cat shit”. Just ask Gretchen how many times I lose my temper. This latest symptom, the increased swelling and joint pain from RA has me very upset. I must deal with this and try to remain calm; let things happen and do what I can, but be happy letting things go. I have a huge pile of laundry to do. Gretchen does not mind that it is going so slow, it is me. It is a statement about my illness. The laundry sits there a monument to the disability I am suffering. I am not comfortable with that label. I feel less of a man to have to let so many things go.
Things I do to relieve my pain:
Long hot showers help and relive some pain for about 30 minutes. I use the shower massage to just beat on my sore places.
I pack myself in pillows in a chair, use a heating pad on my neck and shoulders, and an electric heated throw blanket over me. The heat eases the pain somewhat and I read or listen to music. I sit like that as long as possible and do some things when I must get up to use the bathroom. After accomplishing some tasks, I get back in the chair.
Narcotics: I could never move without Narcotic pain relievers. I use Vicodin Daily about 3-5 a day depending on pain. I have Percocet for when the pain gets really bad. Please note these only give me at most 30 % reduction in pain. I am never pain free.
Meditation and prayer have been helpful also. I try to quiet my mind and spirit. Sometimes I turn out the lights, light candles, and pray or meditate in the softly lit room. I have become light and noise sensitive when my pain is high. It is like a full body migraine. Noise actually causes me pain. I cannot concentrate and if there are more than one sources of sound, it is hard for me to listen to someone talking. It hurts to think.
I constantly have to stop and quiet myself, asking people to repeat what they just said because it all sounds like a fog horn to me. My wife simply speaking in a normal tone of voice shakes my whole nervous system in what I call “Jangling”. It is not her fault; it is all in my pain and illness. At times the is an electric buzz going all through my nerves, just making me feel like I will vibrate out of my own skin. It makes me snappy and grouchy. I come close to full blown panic attacks because of the buzzing.
I feel a total loss of control. My body is betraying me. The system that is supposed to protect me from disease and sickness is convinced that my own bone and tissue is an invader. My own immune system is destroying healthy joints, and organs. It is on a mission and is increasing its efforts. The medicine I am taking once a week is (Methotrexate) is going to take 3-6 months to show any reduction in pain and swelling, if it works. The medicine has rather bad side effects too: liver and kidney damage, and vomiting and nausea for days after I take it, hair loss. I have meltdowns : crying jags that last for a long time. Great soul shuddering sobs and wails come from deep inside of me with an intensity that is overwhelming. I never knew such strong emotions that bubble up seemingly randomly.
So, my life has come to this. It’s not pretty, but by journaling and keeping in touch with some good friends online who suffer autoimmune diseases too, I hope to keep the last shred of my sanity, and I hope and pray that I will be able to be productive again someday.