Thursday, March 30, 2017
There is a term called "Fibro Guilt" that I'll bet every single person that has Fibromyalgia can immediately identify with and that most of us who have this debilitating disease have shed tears over. I think all people who live with "invisible illnesses" like Fibromyalgia, Chronic Fatigue, Lupus, IBS, Rheumatoid Arthritis and other autoimmune diseases that have had their lives so dramatically altered suffer from frustration, anger, and lots of guilt. We feel guilty for not being able to do the things we used to do. We are not able to be there for our friends and family all the time and have to bow out of events and plans when the pain and exhaustion get to be too much for us, many times at the last minute. If we are still able to work outside the home, we feel like we are not giving 100% to our job and that our coworkers are having to pick up the slack when we cannot get it all done. If we are no longer able to work outside the home, we feel guilt for not contributing financially to our family. And speaking of family, we are frequently not able to be the same parent or spouse that we used to be and that leads to huge amounts of guilt on our parts. Today was one of those days that the "Fibro Guilt" hit me hard and left me in tears crying while my husband gently held me in his arms.
I have been having a bad flare that is going into it's second week now. Between my Fibromyalgia and my Chronic Fatigue Syndrome, I have been in lots of pain (to the point of wanting to throw up) and have been getting very little sleep, although that is exactly what my body needs to heal. Within the previous 2 nights, I had gotten a total of 6 hours of sleep and that is with the "help" of sleeping and pain medications. Tuesday I managed to go to work for 2 1/2 hours for the MOPS program after only getting 2 hours of sleep the night before. Laurie and I had 15 kids to watch between us ranging from babies to 5 year olds. The other person who was supposed to come in and help cancelled at the last minute. We both were going full bore the entire time. After we were done, I stopped to pick up a few groceries, grabbed some lunch to bring home and then collapsed on the couch once I made it home unable to move much at all. I dozed off for about 20 minutes. Tuesday night our Heather got ahold of me telling me that she was not feeling well, was in pain and wondered if I could watch the boys if she had to go to the doctor the next day. We had already planned for me to go over the next morning to help her homeschool the boys, but now she was not sure she would be able to do that. I told her to let me know Wednesday morning how she was doing and what she needed me to do. I was really worried about her. I got a call Wednesday morning and Heather was not doing well at all. My son Chris asked me if I could come over and watch the boys so I got myself ready and out the door. By the time I got there, I could see that my Heather was in lots of pain. They headed out and it was just the boys and I with me not having had my coffee yet. Heather, even with being in pain, had made me a pot of coffee because she is just amazing like that.
Bradley and Isaiah were so sweet and so excited to have me there with them. They both gave me big hugs...and it hurt, bad. 😢 I came close to crying but I was so afraid that if I did cry, the boys would feel awful for "hurting me" even though it would not be their fault at all. I told them I loved them but we had to be gentle with Grammie. Since my body was aching and so was my head, I took some ibuprofen while I sipped on my coffee and had the boys play hide and seek with me. They hid, Grammie seeked. It gave me a chance to drink my coffee and to have the pain meds take effect. We then sat down to ready some books together. They cuddled in on either side of me and when one of them leaned in too fast against me, it hurt, bad. 😧 I had to tell them again to be gentle with Grammie, because my body was hurting. While we sat there reading together, I kept telling myself to focus on those two amazing little guys that I loved with all my heart and being able to spend special time with them and not on how bad I was hurting. We then found other activities to do like seeing what kind of metal magnets stuck to (Science), where the kids in the Lego magazine were from on the map in the school room (Geography), and Bradley got out his reading book and he read to me (Reading). We had lunch and watched some Lego episodes on Netflix. After that we built with Legos. Yes there is a theme here with Legos. I poured every bit of energy and strength I had into my grandsons for the 4 1/2 hours that I was there while Heather had her doctor's appointment and had some tests done at the hospital. Once I got home, I was done...like exhausted, hard to keep my eyes open, but not being able to sleep and my sciatic nerve decided to just act up too to add insult to injury so to speak. I heated up some soup for our dinner and then burst into tears.
Everything came pouring out of me...how I felt guilty for having to tell the little boys that they could not hug Grammie tightly because it hurt me and that they had to be very gentle when cuddling with me. I never want my grandsons to be afraid of hurting me. I felt guilty that I was so exhausted and an emotional wreck. I felt guilty because I can not contribute financially to our household like I used to. I felt guilty because my husband has to pick up the slack do lots of the things that I used to be able to do. I felt guilty that all the financial burdens are now on my husband. I felt guilty for not being the wife to him that I once was. I felt guilty for costs of all my supplements that I need to take and for all the medical expenses. I felt guilty because I have not had the energy to even respond to the comments from so many kind people who have commented on my past few blog posts and I feel like I am being a horrible friend. I felt guilty for all the stress I feel due to the horrible and hurtful behavior towards my husband, my kids, grandkids and myself by my husband's relatives that just makes my Fibro flares worse and that has caused this HUGE flare that I am in now. I felt guilty because I feel like I am a burden. I just felt guilty.
My sweet husband just held me while I cried and let me vent. He then gently told me that he loved me and that he was there to take care of me...that was his job. He told me I am not a burden and that I take good care of him and he appreciates that. He also told me that we are in this together and that he will do whatever I need him to do to help me through this. I calmed down and we talked some more things through, helping me to process them. But you know something...the guilt is always there and some days it's "voice" just screams at me making me feel simply awful about myself.