Deena BinghamAs I sit here at my daughter’s gymnastics meet I ponder why it has been over a week since I have written a post. There are a lot of reasons for this and I could list dozens of them, but the honest truth is I have been anxious and panicked about writing another post. This is the elephant in the room and so many people suffer different forms of anxiety, depression and panic. I haven’t posted because I have been very anxious and overwhelmed about the prospect of writing a blog and the possibility of letting people down. I have all of these great posts floating around in my head but after posting the first few I felt panicked about the prospect of writing more. Wondering what everyone is thinking of me and thinking the worst! I know it is silly, but it is how my brain works. It isn’t because I didn’t want to write. I still believe in my heart that writing an honest blog about life with Lupus, the good, bad and the ugly is what I am meant to be doing, but I still ride that roller coaster of panic and anxiety. Just like the stages of grieving: denial and isolation; anger; bargaining, depression, acceptance, it doesn’t end when you complete them all, the stages start over and they don’t always go in order. It’s a continuous loop of stages. The key is learning to recognizing where you are and over time developing techniques and coping skills to handle each stage more effectively. There are several blogs and sites I have visited that have talked about this, Five Stages of Accepting an Illness, Stages of Grief and Chronic Disease, are just a couple but there are a ton of articles out there if you would like to research on your own.
Most people see me as a very happy person, optimistic, seemingly able to handle the stresses of every day life and having a chronic disease quite well and most of the time that is me, I can go with the flow pretty well. In public I mostly always have a smile on my face and really do like being around people but the honest reality is that I do have anxiety, depression & panic attacks. I really am generally a happy person and quite regularly able to accomplish an abundance of tasks with proficiency but the prospect of starting something, the beginning, overwhelms me for days. Until I sit down and really dig in I feel completely panicked. I don’t procrastinate because I am lazy, I do it because I am anxious. This being said once I let go of the panic I can move on and complete what ever I started out to do.
This though was not always the case.
Let me tell you a bit about my story. I was a very shy, introverted child, and at times I still revert to that shyness. It took a lot for me to overcome the tendency to not want to talk or be around people. I was very happy living in my own little world. I worked very hard to come out of my shell. Because of this throughout my twenties I began to have panic attacks and high anxiety. I believe because of the anxiety and panic when I started to feel sick all the time some doctor’s would label me as being depressed. I did have a doctor tell me when I was 25 that my ANA levels were high and if I ever started to experience joint pain to contact a rheumatologist. This all started a roller coaster ride of feeling like a hypochondriac and lazy because I never felt well, which in turn led to feeling very unhappy and depressed. I was constantly thinking if only I do “this” then my life will be better. I was never content. Looking back I believe that because my health was so unstable this really messed with my mental well being. Fortunately though I was able to still be a professional, work, raise a family and be a part of my community, but all the while feeling like I was spiraling.
Moving into my thirties and having several tragedies happen in our families, moving to a new state, my dad’s death (which was very traumatic for me), my husband moving 4 1/2 hours away to take care of his brother who had ALS , starting a new business all happening within a two year period, my mental and physical health spiraled into a very dark state of depression. I got to the point that all I did was curl up in a ball and cry, very sad and very depressed. It got to the point that I didn’t even want to leave my house. I did not want to exist anymore, life was too painful. Fortunately my husband and a dear friend realized that I desperately needed help and this led to a week at Copestone in January of 2007, a mental health facility in WNC. I was diagnosed with PTSD, and this began my foray into learning how to heal mentally which in turn helped in my process of learning how to manage my Lupus.
Going to Copestone was a turning point in my healing. I took a year off, checked out from the world and focused only on my mental well being and my family. I spent a lot of time with God in prayer, focused on my spirituality and did some serious introspection. I believe God always has a plan. Even when bad things happen in retrospect I can always look back and see the good God has made happen from that bad.
Not long after my mental breakdown I was diagnosed with Mixed Connective Tissue Disease, because at this point my Doctor was still unsure as to whether or not I had Lupus and there was still the possibility based on symptoms that I could have overlapping diseases. It took sometime to finally figure out it was SLE. That being said my Lupus tends to attack my central nervous system so in my case I have CNS Lupus or Meningitis Lupus because whenever I get tired, sick or flare I end up with Aseptic Meningitis and have symptoms that appear to be stroke like. The road to this diagnosis was not easy. As I said before your relationship with your doctor is very important. I had a primary care physician that did not believe I actually had Lupus, even though after my first bout with Meningitis, my rheumatologist was pretty sure it was Lupus. I became very sick at this point and depressed. I had just begun to heal mentally from the tragedies in my life and now had to deal with the constant struggle of either being sick or being in the hospital constantly, having a doctor that didn’t believe me and running through all of those stages of grief in a constant merry go round. This went on for years until as I said in other posts, I felt that I would not survive and I was not ready to die, to leave my family, and not watch my grandchildren grow, this began my intense journey to wellness.
The struggle of having a Chronic Disease is daily. I always refer to it kind of like being a recovering alcoholic, it is always one day at a time. Every day I wake up and have to decide how many spoons, (The Spoon Theory), I have for that day. Some days I am a trooper, I jump out of bed, or in most of our cases, I slide slowly out of bed :-), I do as much as I can with the satisfaction I did my best, with no guilt involved for choosing to not do some things and saying no I am having a bad day. Other days it’s a struggle just to put my feet on the floor. I am so tired from the pain and insomnia that I experienced the night before that I just don’t think I can face the day, the week or even the next year. Most days like this I can rally, call on God and with His help and lots of prayer make it through the day. Then there are those times that I just can’t do it. I lay in bed, I cry, I feel depressed and I have panic attacks. Sometimes on those days I still show my smile and function in the world, but inside I hurt, I am crying and I am overwhelmed. There are also days that I go through every stage of grief in disease there is, I wake up and deny that I have a disease, and then I feel isolated and angry, I feel that no one can possibly understand, what’s the point, then I say okay God let me feel better today and I will do this, I try to bargain, I promise take the pain away and I will spend more time with you. Truthfully though He doesn’t want us to bargain, he just wants us to give our pain and worry to Him and wants us to know he loves us and He suffers right along with us. Then I can get depressed and if I am lucky,I can accept move on and do what I talk about in all my other blog posts. Make the choice to watch what I eat, exercise, rest, take my medications and supplements, and learn to accept my limitations and take one minute, one hour, one day at a time, and be content where I am that day, because if I do this I can overcome, I do have hope and I can live a full wonderful life.
Once again thank you for being a part of my journey and letting me be a part of yours! I pray that I gave you some hope & encouragement today in knowing you do not fight this battle alone and that this posts helps you in some small way.
Take the time today to find your joy, inspiration & passion! God Bless you all and I will talk to you again soon.
Please comment or send me a message if you have any suggestions or just need to talk. Deena 🙂
