The last couple of weeks have been crappy. First, I had a major headache, not a migraine, but a dull ache that just wouldn’t go away that attacked my entire head. It affected my quality of sleep, my dreams, and even my attitude. I had to fight hard not to be grumpy around my caregivers. I haven’t had to call off my caregiving services in a long time and Thursday I had to. I just felt achy and I was hurting. Besides my head hurting, my left foot, in my toes were hurting. With the RA my toes are shaped funny and ache. Even with the numbness from the nerve damage I can feel the aches and pin needle like pain that affects my feet. Thankfully, my right foot isn’t hurting. And thankfully the wounds from my surgery on September 9th are healed.
Besides the aches, I have had a lot on my mind. What’s on my mind? A lot, actually. Since I got the news from my fabulous ENT that I am heading towards either losing my voice with putting in a bigger trach so I can breathe better or getting tracheal resectioning done. I’ve been in a funk. While being in this funk I have been watching a lot of Youtube videos of the Chronic Babe’s AWAP videos. I’ve also been listening to music on Spotify. I was excited to discover that Chronic Babe has her own playlist. I haven’t gotten through all the songs, but it’s been uplifting and fun to listen to. Check it out here. I’ve also been playing a lot of Words With Friends. I’m having a hard time accepting the fact that I could lose and it’s a big could lose my ability to speak. I would lose more of my independence to do things for myself. I also know that the option I am choosing the Resectioning will be the best choice for me. It requires an invasive surgery. It requires me to go under anesthesia. It requires me to have faith and trust in Jesus and his plan and team that he is providing for me. It also requires me to start taking better care of myself. I’m guilty of not taking the best care of myself. I’m doing better than I used to. So I am not going to beat myself up too badly. I have big gaps that I can improve on. Especially how and what I eat. I could move more. Reading Dick Van Dyke’s book “Keep Moving” inspired me to seek out moving my body more. Here is a 90 year old man who is still dancing, still moving his body, and is married to a woman who is 40 years younger than he is. I know from my own research moving my body is an element of self-care that will help me. I just have not found the movement that works best for me. Walking long distances doesn’t work for me, because of the issues with my trachea. Not until I get the section of my trachea that is scared and causing my issues removed I have to let walking or massive cardio workouts go. What does that leave me? That leaves me strength training. I know strength training will help my muscles in my legs and feet and other muscles of my body not to be atrophied. Since, I am using my wheelchair more in public because of my trachea breathing issues. Being more vigilant about using my theraband and balance ball more is a big key to my health. I have done some great research on some exercise I can do. I even pinned them to my pininterest page. I have been feeling lately what is the use? Since I am going to lose my ability to speak, since I am disabled and will become more so, since according to society anyone who is not healthy, who is disabled, can’t speak, can’t walk, can’t breathe is useless and not worthy of anything. How do I fought these misnomers? How do I contend with the loneliness I feel because of my disability? How do I deal with the pain and frustration of having to be more mindful than the average joe or joette? It’s frustrating. I know that my mind is muddled with negativity. Just because I am writing and feeling this way, don’t think I am giving up. For me, admitting how I am feeling is how I get through, how I come up with a plan of attack, and become the rocking Chronic Babe that I am. I’m stealing this motto from one of my favorite blogs and ladies I’ve been reading for a long time the Fabulous Chronic babe herself Jenni Prokopy.
So far, my solution has been to get back on the bucking bull and restart doing some of the things I have done before. Such as, remembering to take my medications, getting on a sleeping schedule, tracking my food, movements, pain, oxygen, peak flow, and my blood sugars. The peak flow I have been doing. I love seeing the charts that I have made in the last few months. This is a valuable tool that I use. I haven’t done a food or movement chart for a long time. I hate myfitnesspal. I find it cumbersome, I find it difficult, especially when it comes to my exercises. I can’t find the exercises that I do that I got from the physical therapist. No apps for me. I don’t own a smart phone. I will do it the old fashioned way, pen and paper. I got this awesome tracker from the Arthritis foundation. “The Better Living Health Tracker” is a book for 6 months that allows me to go weekly, not daily where I assess my progress with something called a Rapid 3 that doctors use to assess you in their office. I love it. I know this will help me to communicate effectively with all my doctors about my progress with my diseases. What I love is that it has at the beginning where you list your goals for each month. That is something I have been doing for the last few months on my blog. I love that it is now in a booklet form. This is my first week using this tracker. I have also pinned some awesome crockpot recipes to try out that are healthy. And I know that I have a great team that comes and help me 4 days a week. I just realized that one of my focus words this year has been Self-care. I will have to write more about it in another post. Question for you my dear reader. What are some of the hard things that you have had to process? What is a way that you process through them?
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