(Hazardous if Touched) Patients for a Moment (PFAM) Blog Carnival Post
The topic for this month is "What does your illness feel like."
"On a scale of one to 10 rate your pain." The only doctor's office who doesn't bother much with that question anymore is my Rheumatologist. Everywhere else, I usually roll my eyes and tell them to pick a number and multiply.
Living with Rheumatoid Arthritis, Sjogren's Syndrome, Lupus or any of the other Autoimmune Arthritis Diseases feels like you are a being beaten
with a baseball bat, stabbed me with a hot poker and ran over me with a tank on a daily basis.
Imagine your worst day with the flu, now multiply that by 1000, the fatigue so bad you can't get out of bed. I feel like that everyday but I do get out of bed.
How about that time you broke a
bone, remember the pain, what if it never healed? Do you remember the pain from the surgery you had? How about your worst headache or toothache? Magnify that and think about what it would be like if it never went away.
I also get the bonus of fingers and toes that tingle all the time. I stagger all over the place due to dizziness, I don't even get the benefit of enjoying a drink! I have pain on the top of my head so laying on my pillow hurts as well.
Sjogren's Syndrome means my eyes feel like they are full of grit and are blurred and sometimes I see bright lights and I get a lot of headaches, it also means my mouth is so dry I can't go without water for even five minutes, I have serious damage to my teeth due to dry mouth.
Raynauds means my fingers and toes turn blue when they get cold and then burn from the pain.
My body aches, pops, cracks, snaps, like a much angrier rice crispy commercial. I can feel the swelling from the fluid in my body making the skin on my hands and feet feel tight and more painful. I feel uncomfortable in my own skin. Clothing hurts me, being touched hurts me, breathing hurts me, being awake hurts, I can't sleep, I'm so tired from the disease I can't function but the pain keeps me awake.
Having these Autoimmune Arthritis diseases feels like my body has been taken over by some evil force and there's no fighting it. The battle goes on internally cells battle each other and kick me in the joints.
Anxiety is another feeling with these diseases, Where will I be comfortable? What can I wear to be comfortable? How far can I travel? Where is the nearest rest room? Where is the nearest water? Will their be stairs? Will people stare at me because I have to park in handicapped parking? All of these make me feel anxious.
Having these illnesses makes you feel isolated, since some people don't understand or want to understand what you have. People will forget about you, or you stay home a lot since you are too ill to go out. People assume you don't want to socialize when the reality is you would love to.
On the other hand, there is the wonderful feeling of when you find people who care whether it be online, people like you or healthy people.
I have found both online, and an absolutely amazing group I volunteer with and advocate for my diseases. That makes me feel empowered, keeps me busy and gives me the attitude that this disease will not take over my life.
This is what it feels like the day in the life of an Autoimmune Arthritis Disease patient. There is a lot of bad, but through it you can live and find a life for yourself.