Wednesday, November 8, 2017
Frenetic Fibromyalgia Moments
I thought that I would share today about how it feels to have those "Frenetic Fibro" moments that usually come after a crash where you feel like you have to get everything done that you were not able to do when you were crashing and could not do much at all. The reason I am sharing this today is that I am in the middle of one of those Frenetic Fibro days. Now I want to say that this is a term that I have coined to explain how I am feeling.
Yesterday was a bad crash day for me. Walking down the hall was even difficult. It HURT! I did everything I could think of to try and ease the pain. By the evening, it finally eased up enough that I was able to get in and out of the hot tub without help. Some days, even though the hot tub helps with the muscle pain, I can't even manage to get in or out of it on my own and there are days when it is way to painful to even life my legs over the edge of it and ease myself it. It feels like I have lead weights for arms and legs.
Be right back...phone is ringing.
Rachel just called and asked if I would like to come and cuddle baby Steven, who is teething, today while she gets some housework done. Normally I would jump at any chance to spend time with the two of them, but I just can't today. I explained to her what was going on with me and she, bless her amazingly loving heart, understood that although I wanted to come, I just can't today. My nerves are pretty much shot and I feel like I am on the edge of a panic attack...not what baby Steven needs or Grammie needs. I think with his fussiness and my anxiety, neither one of us would be helping each other and would just make each of us even worse. 😩
So here is a peek into the way my mind and body are working today (and this is pretty common for me). I woke up knowing that I was behind on things around the house. I had a list of things that needed to be done today...like crucially needed to be done. I then had another list of things that I wanted to get done because they were driving me nuts sitting there on my "to do" list and causing anxiety for me. First off was getting going on the laundry. I have a total of four loads to get done today. Now I know that one of those loads could wait until tomorrow, but the OCD has kicked in big time by now and in my mind IT MUST BE DONE TODAY! I tried to convince myself otherwise but that led to more frenetic energy and ramped me up big time. I got busy making bread dough and got that rising and then started on the Scrapple that we are having for dinner tonight. Once I had that done, I discovered that something had leaked in the refrigerator, so of course I had to clean that up right away. The risen loaves of bread then went into the oven to bake and I got busy on getting the old leftover bread loaf cut up and seasoned to make croutons with. While I am running around doing all this, I am still working on getting loads of laundry in and out of the washer and dryer, folding them and letting the fur babies in and out of the house onto the back porch more times than I want to count.
I notice that my body is aching more and more with each task I do, but I keep pushing myself knowing that I will be paying for it later. Instead of thinking like a rational person, I push myself further and further. The bread comes out of the oven and the croutons go into the oven and I fold another load of laundry. The croutons come out of the oven and more laundry needs to be folded and another load transferred from the washer to the dryer. By this time my muscles are burning and screaming at me...do I stop? Nope! I still need to take a shower and get myself ready for the day, run down to the post office and library (I have things due today and some things to pick up and the library will be closed by the time Jeff wakes up). Chris is coming over later to drop off the truck for us to use to get pellets for our pellet stove and I have to gather some things up here for him to take back home with him. I notice that the floors need to be vacuumed and once again the OCD kicks in. I cannot do that until Jeff wakes up and it is driving me absolutely bonkers. Only 2 more loads of laundry to deal with! Yay!!!!
Some days I can honestly pace myself and rest when I need to. Days like today are ones where as much as I KNOW I need to do that, the frenetic energy, anxiety it produces and OCD have me so ramped up that even trying to rest makes it even worse. I know it sounds crazy and counterproductive and it is. It is that whole "flight or fright" response that many of us with Fibromyalgia find triggered up big time. Our central nervous system is always on high alert, even on good days, and we can't help that. It is part if this disease. But days like this take it to a whole other level. It becomes a compulsion that many of us cannot control, even if we wanted to. I know that so many of you have shared with me how you are amazed at how much I can get done, even with this disease coupled with my CFS. This is the reality of how it happens. I push myself to the limits and beyond some days because I know that there is always another crash and flare around the corner and that produces anxiety for me. My pattern has become push one day and crash the next when I get this ramped up. Sometimes I am able to pace myself and do one thing and then rest, do another and then rest and honestly, that is the best way for me to manage my life. Today is not one of those days.
I know I sound like a crazy person but honestly there is some science behind this. Studies have shown that most of us with Fibromyalgia are type A people who have had some severe trauma in our childhoods when our central nervous system was developing. Some of us came from abusive homes, some of us came from homes where we were expected to be perfect at all times, some of us were forced to step into the role of being a parent and help raise our siblings and were held accountable for their behavior also. Some of us were sexually abused as children by family or others (for the record, I was not sexually abused by a family member) and to add to that trauma, were either not believed or told to keep quiet about it and were never given the help that we needed to deal with it. We all learned to be hyper vigilant at all times and it has taken a huge toll on our health. We are sometimes able to find ways to cope in our early 20's and 30's, but by the time we hit our 40's and beyond, our bodies become "stress overloaded" and our symptoms get so much worse. It's like the dam has reached it's breaking point and develops some cracks at first, so some of the water starts to escape, but the pressure continues to build on those spots too making the cracks bigger and bigger and then it bursts wide open. Does that make sense? It's like our central nervous system is now programmed, due to our past, to be on high alert at all times. This increases our perception to pain and causes our muscles to tense up big time, which causes even more pain. Stress causes us to have more anxiety, which then causes us to feel even more stress because we feel guilty and are in severe pain, which then causes even more stress, anxiety and pain...it is a vicious circle.
Here is my "saving grace" in all of this. On days like this (and every day for that matter), my family and my close friends understand and do what they can to try to help me. Rachel was wonderful when she called and fully understood that I just could not help her today, even though I wanted to be able to with all my heart. She was very loving, compassionate and cared about me. Yesterday, when I was crashing/in a flare, Josh called me instead of us just communicating back and forth through facebook messenger because he knew that typing was difficult for me right then. If my husband sees me pushing myself, he will literally step right in and take over on certain tasks for me and we will work together to get through my list. He will also make me go and rest and sometimes I am able to for a little while at least before I get back up and tackle another project and continue to do so before my body just won't let me anymore. He has taken over certain chores, like cleaning the kitchen, which tends to overwhelm me and causes me to hurt like crazy. My friend Shannon, on a recent shopping trip to Costco, took one look at me and knew I was having trouble understanding what she was saying about how to load up her car with our groceries to make it all fit (it was a bad fibro fog day) and had me take care of her adorable puppy and she loaded the car. She then also realized that I could not deal with any more "stimulation" of having lots of people around me, so we grabbed lunch to eat in the car on the way home instead of going back into Costco to grab some lunch there. My family knows that I am limited in energy and that there are days when I just cannot cope with anything more. Without their help, love and support, I know I would sink into a deep depression (which is very common for people with CFS and/or Fibromyalgia). It is because of them that I am able to focus on the good things in life most days and know that there are brighter days ahead, even when I am at my lowest and breaking point.
So there you have it. A look into what my Frenetic Fibromyalgia Moments look like. I do hope that it helps you understand what it is like to have this disease. We do have these really strange bursts of adrenalin that cause us to get like this. It's like riding a wave of extreme high frenetic energy and then crashing again. This is part of this disease. That is why we will work like crazy and wear ourselves out one moment and not be able to move the next. We are not "faking" our illnesses or looking for sympathy, we just want people to understand that this is a real disease, just like CFS is or Lupus, or Rheumatoid Arthritis (which sometimes are illnesses that people with Fibromyalgia also have). For me personally, I have both CFS and Fibromyalgia, along with Arthritis, IBS (which they now are saying is actually part of Fibromyalgia) and Hypothyroidism. Yes folks, I am a medical mess here. ;) But my illnesses are not fatal and for that I am extremely thankful!