Now that you all have an insight into me a little more, I am confident in sharing more personal struggles. It isn’t easy to bare one’s soul, it’s even harder to let others in to see and understand the physical pain I suffer from or its effect on my mental health. I have wanted to start a Rheumatoid Arthritis support group for so many years. I couldn’t believe the people I’ve met that also suffer from the physical pain, unable to find resources, find the right doctors, and medications. It’s frustrating! I haven’t done it because I don’t feel qualified.
I call my bad days “sick days” because it is just easier to say I’m sick than going through a long boring explanation. Hahaha. These days that’s not wise as people now assume I have covid and go into a rant. My inner circle knows the code and that’s what matters most, I guess.
On these days it’s not just a small pain that ibuprofen takes care of and in a few hours I’m good to go. No, on these days I’m struck down…debilitated! My RA is in 90% of my body and pain is every day. The pain is just on different levels. I like to describe level one as if you were to stub your toes on that hard end table and the worst pain as being in a horrible train wreck and in traction. My medication is not a cure but a tool to help me function in my day-to-day activities. Pain relief is the hard stuff, so, I don’t get any of that until I am so bad and am bedridden. They don’t allow me to keep that on hand. I sort of check out on these days, I am unable to get out of bed on my own, I need help with the smallest of tasks i.e., dressing, drinking from a glass, even eating a bowl of cereal hurts my hands. I am useless! There is no cure for RA, I was told in the beginning (the ripe old age of 19) that I would be in a wheelchair by the age of 35. that I’d probably be in some kind of assisted living by 50. I have eluded both! I’m not going to lie, my biggest fear in life is being in a wheelchair! I am actually ashamed of myself admitting that, that I am embarrassed at the thought of using a cane or a walker let alone be wheelchair bound. I’ve been told my pride is a double edged sword… on one hand it helps because I’m too stubborn to give into the pain and keep going yet on the other hand I don’t know when to or will ask for help when I do get real bad and end up worse off. Then it’s too late.
I have been on my own for a long time, to say I’m independent is an understatement. I was married for five years and then we were off and on for seven more years. I did date a few times but nothing came out of those relationships. In hindsight I was never comfortable with my physical inabilities and my mental health to be a good partner to them. I did my best. I had the mindset “I don’t need a man!” or I’d get defensive when they would want to “help” me with something, I’d be all “I CAN DO THIS!” That is not fair to anyone who is just wanting to be there and I couldn’t be kind and accept it. I guess I felt it was a coping mechanism of some sort. Relationships with friends has been hard, too. One, I’m the only single person in the groups and two, they all are outdoorsy people. i.e. hiking, fishing, kayakers and all that. NOT ME! hahahaha. give me a movie or a night out listening to a band, sitting down. It is sad, I loved to dance; I used to shut the clubs down dancing all night long. I knew the latest crazes and even learned a few country line dances (I am not a country fan, rock is where it’s at for me.) I used to be the life of the party! I’m lucky now to make it through a few songs and to get up and down from the seats at the venues. The world is not handicap accessible, I have to find a way to be able body acceptable. Breathe in and suck it up! I want to join my family and friends in the adventures as much as I can, unfortunately that isn’t the case all the time. lol. My best friend is always wanting me to go kayaking with her. I am always laughing when I tell her “Absolutely NOT! I am not going to get in that tiny death trap water grave thingy! I can’t swim, I am unable to get down inside those things or get out…” she’s like “you wear a life vest and ours is raised up, like a chair.” Laughing more, “So I can tip over easier! NO THANKS!” I choose my battles and that is one she is not going to win! The whole “Fear not for I am with you!” well… God gave me a brain and I’m not testing my guardian angels for this one. I don’t use my disability as a crutch, either. I have never used it to get out of plans or appointments, unless it is for real and I cannot move. Sometimes I’d like to, but do my best to still be in the moment and spontaneous.
My inner circle knows the cues and the hints. If I am missing in action for a long period of time then most likely I’m having an episode, If I am out and enjoying life, it isn’t that I’m not suffering; it’s me pushing through and living. I want you readers to understand that a lot of people have struggles. Some show physical signs and some don’t. Be helpful. Don’t get upset that someone in front of you in a line is slow and clumsy or get irritated because someone isn’t maneuvering their wheelchair or automatic device smoothly. Be patient. Just because you can’t see a disability doesn’t mean it isn’t there. Like me, they are probably embarrassed or unsure. Be kind!