Aaminah, you could be writing my journals. I have Systemic Lupus and Avasculoar Necrosis (AVN) in both femoral heads (hips) because of the Lupus and steroid treatment. I am in chronic pain and spent most of the last 5 years literally bedridden. I starved because I could eat because my Lupus attacks my peritoneum and eating felt like being stabbed with 12 knives. So on top of the Lupus flare this time I began to have symptoms I had never before had and no one could figure it out until I read a story on Medium…you may read my story in responses, should you care to one night when you can’t sleep. Funny how the more fatigued we are, the less we can sleep. My “new” symptoms which were physical but mostly brain and emotional symptoms were from malnutrition/starvation. I couldn’t think. I became anxious. My head was foggier than ever. My doctors thought I was dying. It took me another two years to understand that my Lupus was complicated by starvation. I had no idea what starving does to one’s body and brain. I do now.
Thank you for writing and publishing this very brave journal.
I beg you to cry. And cry and cry. Using energy to hold in emotions I felt and fought has caused me as much grief and pain as Lupus or AVN or loss of my ability to have conceive children, because I had imagine and lived, for a while, a different life, because I can no longer make plans or expect to awaken and know how I will feel. We are all different even thought we share symptoms and meds and not being able to put our dogs out to pee. Believe me, I know but I have done this since I am 12, I am now 61. I was raped. I had PTSD. I was acutely and chronically clinically depressed. Had it not been for finally feeling, I’d have died long ago by my own hand. IT IS A VERY HARD THING TO DO, TO FEEL, TO HONESTLY FEEL. Most “well” people can’t do it. Please do it. Feel, cry, react to your emotions so they can have a place to go and leave you alone.
I am so sorry you have to face so much. It isn’t fair. Having someting so unfair happen to anyone make me angry and sad. I feel that way about my own illness and I hate it. It makes me so angry that I yell and scream and throw pillows so I won’t hurt my dogs and I rest in peace. I have stopped MS Contin, Oxy and Fentanyl just a year ago: that sucked but I am using a great drug which my doctor had to write for something other than pain but just last week was to be released to treat pain as it treats it in other countries. It is a miracle. I need less and less rather than more and more. My head is clear! My nausea is almost non-existent but when the Lupus hits my gut, it is part of my life. Still, it isn’t aggravated by the pain meds.
The medicine is known to addicts and is called Buprenorphine or Zubsolv or Subutex or Butrans…all the same thing…and I am sorry that I don’t know the name of the newest version which will be for pain. It will likely cost more than either of us or both of us together can afford but any pain specialist can write a script for Buprenorphine BUT talk with them about it. One does have to start withdrawals and stay in them for about 12 to 24 hours. I did it out of desparation because I wanted a clear mind. I did it before my Lupus body had gotten well enough. But I lived through it. It just wasn’t fun, I suspect it won’t even be fun but you may be too sick to do it just now. Just know there is something that can help the pain without making you sicker and foggy headed.
Please know that I am in awe of you, Aaminah! I can’t believe you do all you do! And that you are writing to help others. What a lovely heart you have. I thank you and I hope you will thank your mother for me for taking care of you. It is very hard to keep friends when we are chronically ill. Many people can’t help but project their own feelings of fear of mortality or illness or their need to feel superior onto us. Having someone like your mom is so amazing, isn’t it? She wouldn’t do it if she didn’t want to do it. I have done things like she has and cared for others when I would go into remission when I was younger because I wanted to do it for those I love and loved. As you wrote this lovely and horrible piece to help others. Let her love you. Don’t feel guilty because someone cares. It is a folly of youth that you will grow out of one day or just let it go now: many have no one who cares. You are grateful. That’s all she wants. My husband is like your mom. I have seen many leave for lives that weren’t nearly as hard yet like your mom he never complains.
Please hold on and keep your art. It will help you merge with the universe and sometimes forget the pain and on the best days it will help you know yourself better.
Know that I am holding you in my heart and will follow you and check on you and send good thoughts your way often. Soon I will send you stories on Medium that helped me heal, helped me think, helped me love.
I hope you heal even if, like me, you cannot be cured. You are very courageous and a hero to me. And I wish you’d cry because if you loved someone who felt the way you do, you’d cry for them. Love yourself. Cry for you.
Peace be with you my sister.