Deena Bingham
I feel like I have failed myself and my readers. I started this blog to help others living with chronic conditions and I also found writing to be therapeutic for myself. Unfortunately as I struggled the last couple of years instead of blogging about my battles and sharing my struggles with you, I shut down instead and retreated into myself.
In 2016 I wrote these words to you in the ABOUT ME section of this blog : “It has been six years since I was diagnosed with Lupus/Lupus Meningitis. My own immune system attacks and dislikes me! I During those years I went though a lot of ups and downs, both physically and mentally. I let the disease define who I was. After all of the at least 20 hospitalizations for meningitis and flares I would start over. But it never seemed to be enough. I used to feel guilty for being sick and constantly discouraged. Always feeling like I was doing something wrong. Even with a diagnosis I felt like a hypochondriac! Silly I know. In late 2014 I decided to drastically change my life and be intentional! I was worried that I would not be here to live a long full life with my husband or see my children grow and have children. I have been given one life and I want to live it fully! I took control of my disease. I found a balance between my medicines and supplements. I changed my eating habits and monitored all of my nutrition. I changed my attitude and mental outlook AND I pursued and communicated with God more in my prayer life, meditation places a key role in battling stress and disease. I also have wonderful doctors who communicate with each other and who partner with me! If your doctor does not communicate with you, you need a new doctor! I have not been hospitalized since January 2015, a record. I feel and look healthier. My disease is still there, I still flare though not as often and I still battle daily physically and mentally BUT I have learned that my disease does not define me. No matter the final outcome, eventual cure or not it does NOT define me. It does NOT dictate how I live my life and it does NOT define what kind of person I am. I am not Deena with Lupus, I am Deena a child of God! All I can do is start over everyday, pick myself up when I fail and know that I belong to God. He has a plan for me.
Unfortunately I have had many ups and downs since I first wrote those words. I have gone back to feeling like the disease will rob me of watching my grandchildren grow and had taken my quality of life away and I am letting it define me. I have also been diagnosed with pre Crohn’s, IBS and my body has been rejecting my meds since summer of 2018 and I am unable to find the balance I once had. My attitude and mental outlook has plummeted and I continue to be full of anxiety and depression as I fight to find my balance between disease and quality of life once again. I still have a prayer life and wonderful doctors and through God, my support system and my doctors I will continue to fight.
I am fighting to get back to those words I wrote in 2016.
As mentioned above in the summer of 2018 my body started to reject my IV infusions of Benlysta that I was receiving monthly, during that summer I was also involved in way too many projects, since I felt better for a couple of years I started to take on more projects, tasks, traveling and rejoined boards I was on before I got sick and took on too many activities. I did this because it gave me joy to be among people again and since I felt healthier I didn’t find it as draining as I once did. In addition to my body rejecting my medications it also started to turn against me because of all the “stuff” I was doing. I was hospitalized in October of 2018 and this led me to resigning and withdrawing from everything I was involved in. I stopped walking, eating right, rarely going to church and now I have withdrawn almost completely from the world and my life. This has had a devastating effect on my mental health and I struggle daily. I have not been on antidepressant meds in ten years, but because of disease taking over my life completely again, the constant pain and my lack of contact with people (which my personality needs and craves), I have spiraled back into the dark place I swore I would never enter again. I sit at home,I can’t focus, I can’t sleep, I don’t answer my phone and I don’t have the mental or physical energy to clean my house, read a book, or write. It is a struggle for me to get in my car to go to the doctor, to all the tests being done, to infusions, to church or to just visit those I love and a part of the world. I am tired, tired of feeling guilty that those I love have to do everything for me, tired of the constant pain, the lack of sleep and missing being part of life the way God made me to be.
I write these words to you not to feel sorry for me, but because I feel I have not been true to my original mission of sharing my life with others that have chronic illnesses so that you didn’t feel alone. I only shared when I was doing well, not when I wasn’t. This I feel is a disservice to those who are struggling with Chronic Illnesses because you need to hear about my struggle as well as my triumphs. This is the only way that those of us suffering with physical and mental health issues won’t feel alone and isolated.
It was a struggle for me to sit down and write these words to you but I felt for my own well being I needed to share. I need your prayers for the pain and the darkness I am in right now and I need you to know that I have retreated from life so that you will know that those of us with Chronic disease do go through phases. Just as I mentioned in my flight or fight blog, we are constantly in this mode sometimes more than other times. I am struggling with my disease more now than I have in years, but I have hope, even though I am failing at the moment in my fight, that I will fight again and find the light, the balance between nutrition and exercise and my doctors will find the balance I need between medications and supplements. I am a survivor, you are a survivor and none of us belong in the darkness of disease, physical or mental pain. Stay strong my friends and I will continue to fight to do the same. I have to remind myself it’s about baby steps and so do you.
God bless you all and I hope and pray that this blog will help you know you are not alone, that there are others that celebrate your triumphs, are with you in your struggles and make your obstacles a little bit easier to handle. Find your light and joy today and I will try and find mine!
Deena
