I awaken each day; the first thing that I do is cry. I cry because I’m in pain and it is as though someone stepped on my back in the night and feels “broken”. My husband hears my cries and he goes and gets my pain medication. Medication that I’ve taken since 2005; and never more but sometimes less. He proceeds to start making breakfast, coffee and give tap water to our Cat. It’s her favorite thing in the morning aside from running up the stairs to get me after about 20-30 minutes. My husband says “Luna, go and get Momma”! She bolts up the stairs and “Meows” at me to get up. She doesn’t stop until I am upright and together we go down the stairs. It’s almost 7:00 am, and most likely I just went to bed at 4:00 am. I have some tea and toast. We chat a bit and he goes to work.
I have choices to make and they are not easy ones. My oldest daughter only lives 2 or 3 blocks away, with her husband and our two eldest granddaughters, ages 4 and 2 1/2. We see each other often but it’s so hard for me to fight the deep, deep fatigue and pain to do a lot of outings and I just am not able to babysit alone, without my husband there. I think it upsets her and I feel so bad inside because I cannot do what I wish I could do. The first year and a half that we were reunited (**my daughter left home at age 18 and was away for 10 years. This is not a story about those very sad times. This is about the reuniting of a family that was broken because of a car accident. My daughters were used to me being and doing everything and suddenly I could not do anything, not even dress myself. My eldest ran from the pain and surgeries), I think I ran on adrenaline. I saw her/them daily and then afterwards, I came home and crashed. Was that fair to my husband? No, it wasn’t! Did he say one word about it to me? No, because he was so happy to see my heart whole again. It was broken for 10 years!
So now it’s been about 3 years and so much has happened. I lost my Dr. of 12 years and the old pain medications that made easier for me to do more, it seemed. My pain Dr. is much better now and the regimen that I’m on is safer. But I’m unable to do the activities that I wish to do with them. If I was the person that I had been, I would be making snow angels with them in the snow. I’d be baking cookies and running around playing tag and “Duck, Duck Goose”. I do play some “sit down” (for me) games with them and we have tea parties. We watch Disney movies and I love it when they sit close to me and play with my hair. I used to take my walker to the zoo or on daily outings. I sat down when I was tired and I just was happy to be together. I’m still so very happy to have everyone together. I could never have had a happy life without both of my daughters and my grandchildren it.
Time has changed me and now I am tired and in pain much faster; more deep than before. In 2013, my CRPS changed from being in my feet and knees; to “severe systemic and disseminated”. It happened after what was supposed to be a 45 minute surgery but turned out to be a 3 hour heart and pectoral muscle rebuild surgery. I’ve never recovered and have felt a deep deep fatigue since then. If I do something for 2 hours one day, then I’m in my recliner for the rest of the day. I don’t want it to be this way, I don’t like it at all. I want to spend a whole day at the zoo with my granddaughters. I feel that my oldest daughter gets so frustrated when I cannot do the things I pushed myself to do at the beginning. Nobody understands “Invisible Illnesses”, not even our own families or friends. We used to go to dinner each Friday with my best friend and her husband. I’ve cancelled a few times in this past year and now I can feel a difference. Things that I wish I could do, I no longer am able to do. I love and look forward to babysitting when my husband is home and he is with me. He is there so that when I start to be too tired and in too much pain, he takes over.
But I lose friends and have lost people related to me. My own family cousin, who’d been my best friend for years; stopped talking with us after the car accident. My husband had called and asked her to come over because I could not be left alone at the beginning. I couldn’t dress or undress myself. I couldn’t even go to the rest room without help. My cousin and another person who was a good friend of ours, told Craig “No, I just can’t help because it’s too sad. When I get sad, then my family is sad and I cannot do that to them.” She took herself out of my life and so did the rest of my cousins, and family. I called my own brother after the accident from the hospital. I had been unconscious and when I finally got to a room, I tried to reach for the phone and missed. I hit my cheek instead. I called the only number that stuck in my head due to the TBI, it was my oldest brother. He answered the phone and I told him I ‘d been in a car accident, a bad one. I told him I was in the hospital and he answered back by saying, “Oh…you need someone? …..CLICK” and he hung up on me. Craig is my hero and the only person who’s ever truly loved me unconditionally. He’s there when I need him and when I think I don’t think I need him so much.