Sometimes the dark clouds come and surround me. They obliterate the sun and the blue sky making it seem as though darkness is all that I have left. Every pain seems amplified, every disappointment deeper, and the future feels like a fairytale that is told to small children put them to sleep at night. And finally, the clouds seem to block out all reason and threaten to silence the hope for a better tomorrow. But I’ve been here before. No matter what my senses tell me I know this will pass. Things will get better. The sun is still shining even if I can’t see it or feel its warmth. I must not succumb to the feeling of emptiness and despair. I must not let this season to cause me to tear down the progress I’ve made thus far. I must live like the bright future is around the corner even if I can’t see it. I must have faith. I will prepare for tomorrow.
I was thinking about the movie the Matrix the other day. You know the part where Neo is being shown exactly what the Matrix is? When he suddenly finds himself in the training program appearing exactly as the person he was before he was freed. His hair is back, the holes in his body are gone, and even his clothes change to reflect who he was-not who he actually is in the present. His residual self-image- not who he is but who he remembers being.
I think everyone on a certain level has a residual self-image. Maybe it is a happier you, a slimmer you, a healthier you, a younger you. Or perhaps it is someone who had an energy level or a motivation level that you can only dream about. No matter what the image of ourselves that we hold dear to our heart-the one we can’t let go- it affects the standards that we hold our true self up to daily.
What I should be able to accomplish on my to-do list and what I am actually able to accomplish are two different things. I have begun to wonder if I ever had the capability to be that productive or has the reality of who I was become warped over the years. How badly have I distorted what I should be able to accomplish in a 24 hour period? Is it fantasy or my residual self-mage makes me more discontent with my present state?
My body certainly doesn’t resemble my residual self-image. In my mind and in my dreams I am still that fit woman with the 25 in waistline and the toned body. The girl who spent 1 ½ hours to 2 hours 4 times a week working out. The girl who couldn’t imagine wearing double digit size clothes and was once told she was too tiny now says a silent prayer to see a size 10 and thinks of the joy it would bring her. The woman I picture in my mind and the woman I see in the mirror seemed to cause my brain to overload. It is hard to process that the woman I see in the mirror is what has become to the woman I hold near and dear to my heart.
Some days I feel that the remembrance of who I was only serves to make me more discontent in the present. Other days my residual self is an inspiration of who I may be again-one day. Other days I am fairly sure that I will land somewhere in the middle. After all, even without RA I am no longer in my 20’s. That girl is gone for good. But what I hope, what I pray, is for the new self that I am slowly building to be better than who I used to be. I will be wiser, emotionally stronger, more loving, and more supportive to those around me. I want health more than the perfect body. I want depth. I want a new better me more than I want to return to who I used to be.
A note to myself on what food is and isn’t
What you are:
- Fuel for my body
What you are not:
- Pain relief-emotional or physical
- A treat
- Stress relief
- A hug
- The answer to life’s stressors
I decided to learn how to knit. Yes, I know. Someone who has RA that affects mostly their hands deciding to take up a hobby which requires finger dexterity seems crazy. But the fact remains that I have always wanted to learn how to knit. When the opportunity came up for me to take a knitting class I jumped on it. While my hands are worse now than when I began taking lessons I am still able to practice for a short amount of time every day. I won’t pretend that there isn’t some pain associated with learning to knit. I am quickly realizing that I won’t be sitting down and working on a project for more than 15minutes at a time. I have also come to the conclusion that most of my projects will have that beautiful icy hot scent. But that is quite alright. Learning this skill has done so much for my mental health. I have been able to pursue a dream (however small) that I thought was loss to me with my RA diagnosis. I will probably never be able to do a project without allocating twice the time any other knitter would need. But the simple fact that I am knitting feels good and empowering. It makes me understand that RA will not dictate what I decide to accomplish in my life. It may cause me to modify how I accomplish my goals, but my goals are still within my reach.
Tonight is injection night. I’ve gotten over the whole sticking myself with a needle thing. The first couple of times I had to inject myself were a bit surreal but now it hardly warrants a second thought. What is difficult is taking a drug that I know will make me feel like truly awful the next day in order to not feel poorly for the rest of the week. Every week I ask myself is this really necessary? I know that it is. Even though I have been on MTX for 5 years now, I still have that moment where I hesitate.
Suddenly I am sitting on my bed counting out six pills. The drug information sheet from my pharmacy is sitting next to me. I can once again feel my heart racing just like it did the first time I took this drug. I remember thinking that there was no denying my condition anymore. I hurt so badly that I was willing to take low dose chemotherapy with the hope that maybe it would control the pain. It was definitely gut check time. I remember my hand shaking as I popped those pills in my mouth and swallowed.
MTX has successfully controlled my joint pain. Usually I need no additional meds than some a.dvil most days. After slowly increasing my dosage and then switching over to the injectable form I was so much better. Until this year I had been flare free. Until this year I could stand to skip a week or two if I wanted to. Until this year I had been pretending that RA no longer mattered in my life. But once again this year my RA made me cry.
Before diagnosis and finding a treatment that worked for me RA was a bully that broke down my resolve. I cried many times a day. Sometimes from the pain, other times from frustration. And this year I cried because I had to deal with those emotions again.
Tonight I need to take my MTX. I will carefully measure out 0.8 cc in my syringe. I will inject the yellow liquid into my shoulder. The eyes that stare back at me in the bathroom mirror will reflect my resolve. For again this week I will believe that everything will be alright. I will promise myself no matter what course this disease takes I will live my life. I will promise myself that I will return to health despite and in spite of my disease.
I believe that I can be healthy with RA (rheumatoid arthritis). My health is not defined by how many flares I have or whether I am indeed coming out of remission. It is about me taking time each day to take care of my mind, body, and soul. Its been a long time since I took time out to take care of myself. I am someone who is always looking for the next big project or the next challenge. But this time the next big project to conquer is getting my healthy! This is the beginning of that journey