So, I am busy. I think we are all busy and I never considered myself anything more than just that. I just finished school, have kids, and have a husband with rheumatic diseases just like me. We both work full-time and do the best we can on a daily basis. I have sad days, bad days, days where I cry from the pain even when I try not to; days where I can barely make it through the day and I crash on the couch as soon as I get home; and good days where the pain isn’t so bad and I can be more present for my family – which is all I really want.
When the theme F&% arthritis! came up for the CreakyJoints site I struggled with writing about the topic. I wasn’t sure how to address the issue because, although I would be more than happy to not have any of my diagnoses, I have accepted where I am at. I am content with me and my life. I have tried to make the best out of what I deal with on a daily basis.
And then something amazing and life-altering happened…..
I attended a conference this weekend with my husband and the participants were just like me (just like both of us) – suffering from chronic pain and autoimmune diseases and just living their lives the best way they know how. While I was there, I realized something very deep about myself. Several things very deep, actually.
Isolation shrouds me
I have been living a very isolated life. More isolated and withdrawn than I ever realized. I always thought I was just busy with school and doing homework. Or, I was just busy with my kids and doing the family thing. Over the weekend I had the chance to be without my kids and have a social life for the first time in a long time.
I just couldn’t keep up. I was so tired and worn out by 5 o’clock that when everyone wanted to go out for dinner and spend time together all I wanted was to go to bed. I stayed each day as long as I could. I connected with others as much as I could, but I just didn’t have it in me. I flared all weekend and I suffered and I took pain pills just to sit in a chair. And, every single day I hit that wall where I couldn’t hold a conversation and I couldn’t keep talking. Honestly? I just didn’t know what people were asking me. No matter how hard I would try to focus I couldn’t figure out what the words were that were spilling out of their mouths. I would have to abruptly say, “I am sorry. I am tired and I am done. I need to go rest.” This is what I have come to call body fog. It isn’t just where your mind and thoughts can’t process what is going on around you. This is where your body acts like a slug, feels like it is sloshing through water or cement and no matter how hard you try it just seems to be disconnected and filled with pain and disease and the most intense form of mortality I have experienced.
Now, this brings me to the second part of my discovery about myself…
Darwin as my guide
I hide. I lie. I cover my disease more than I ever thought. I pretend I am better than I am most of the time and I work hard not to burden those around me with my struggles. I always thought I was being totally honest with my disease, even with those who may not totally get it or understand.
I learned this because at the conference, any time I said I was tired or something hurt, the responses were…..genuine! If someone wanted to help me, they did it from a space of understanding, empathy, and a true desire to help with no strings attached. Not only did those around me understand my every day struggles, they also understood me in the very moment that I talked about it. They understood the tiredness in my face and my eyes. If I limped, they never felt sorry for me and they never made me feel crazy and that perhaps my pain was some sort of elusive beast like the Loch Ness monster that no one gets a real picture of and people can’t agree if it exists or not.
Instead, I could be raw. I could be real. I didn’t have to censor myself and I didn’t have to worry about whether they understood or whether someone was going to look at me with blank eyes, just hoping I would stop talking and move onto something else more “relevant” to their lives. I didn’t have to worry about whether I would get someone who would roll their eyes and say that they hurt too – you know, their pinky hurt and although they had slammed it in a door or it ached just a little bit now and then it was magically the same as my mind-numbing, throbbing, breath-catching pain that stalked and shrouded me with unending symptoms and no possible mercy in sight.
I realized how much I hide from others on a daily basis and how much I censor what I say. This is a shock because I am very straightforward. I am very honest, and I work at being so. I believe that love is honesty. You can’t love someone and not tell them the truth. But, here I was adapting and surviving without even knowing what I was doing just so I can get through a day with some semblance of normalcy. Despite my meditation efforts, or drawing to handle my stress, or attempting to stop when I needed to so my body wouldn’t collapse – I was still shrinking from the truth because I had to adapt in order to survive. Darwin had become my guide at work and in relationships and so that I could take advantage of the fact that “I don’t look sick” so others would first judge my skill and ability and then my body last. I have survived in the fittest way I knew how in order to tip the scales in my favor – if at least for a little while until people saw me with my cane or noticed my limp, or even noticed the whiteness in my face as pain blanketed me like a tortilla wrapped around beans and rice.
So, what do I have to say?
- F&$% arthritis for pulling me into myself so that I have to back away from all the fun and lovely social situations that I used to thrive on!
- F&$% it for making me lie on the couch when I would rather go running or spend time with my kids at the park!
- F&$% arthritis for making me do physical therapy because I had gotten so bad that I couldn’t walk upstairs or even step up onto a curb without assistance!
- F&$% arthritis for making me be disingenuous about my struggles just so I can make my daily life better in the company of the less than considerate public.
- F&$% arthritis for doubling my chance of getting another rheumatic disease, increasing my pain on a daily basis, and pushing me away from who I am and what I know to be true!
- And, F&$% arthritis for latching onto me like a weighted stone attached to me by a person who then threw me into the river to gleefully and hellishly watch me sink into nothing and draw my last breath!
Finally, F&$% arthritis because it will not win this battle! I have found some amazing friends who are like icing to my cake – the magnificent friends who I have known for years and who keep me afloat on a daily basis! I have a man who understands, and kids who love me and I just graduated college! I will get a good job and continue to meet new people and educate them about my disease! Most of all, despite the regression and pain that I know are ahead of me – F&$% arthritis because I will adapt and live and love and be happy!
*The artwork here is the property of the author and cannot be used or reproduced without express written permission.