Haven't been so grand lately.
The pain is intense.
I get cold way too easily.
My emotions have fallen prey to the constant demands of being sick EVERY SINGLE DAY. I have found myself angry, snappish, insecure (HUGE to admit), and suspicious. I feel guilty all the time for not being "me." For having different needs now. For not being "on the ball" in a long, long time. I was starting to doubt everyone. The desire to pull away from all the people in my life has been thick. I don't want to explain anymore, or have people judge me, or think that I should be at a place mentally or physically that I just am not.
Problem?
I have been assuming that I have been a burden.
I have been assuming I know how those closest to me are feeling towards me or about my situation.
I have been assuming that I know things I don't know.
This became apparent this last week as I felt myself in the midst of an emotional anxiety and insecurity that was all consuming. I had NEVER felt like that before. Seriously. It all came out last night in tears and anger and irrational behavior that I knew was irrational, but I couldn't stop. It was like emotional vomit galore. Thankfully I have an amazing friend who talked with me and who works hard at understanding the maddening frenzy of fibromyalgia. It makes a world of difference.
When a moment hits that is so overwhelming (made so much worse by PMS) I cannot stop. The floodgates are open! Tears may occur, or anger, or pure elation. It depends on what's happening.
The noises, smells, and sounds sometimes get to be so much. I read online that is because the brain is processing everything as danger. That's why I jump at the slightest movement, why it sounds like noises are right inside of my head, lights (even from the TV) cause me to recoil and shut my eyes, and I cannot function when too much is going on. It doesn't have to be in the room with me... I can smell and hear as if that siren is right inside of me.
Also discovered that with fibro the cells in my body are working overtime to compensate for the damaged, overworked muscles from daily wear and also from the not being able to sleep. Since most nights I cannot achieve full REM sleep, the muscles do not get to heal. This is a vicious cycle wherein, an already depleted system is working overtime to "fix" the problem. Since the problem is me and my wiring and the brain's inability to stop all the signals and reactions, plus all the other bodily functions not working well either, my body is constantly trying to fight with no fight in it. Weird. It's like trying to drive a car with no gas.
Today the dryer was going, Mylie was talking to me, my Aunt was speaking to me over the phone (I try to avoid phone conversations as the experience leaves me completely drained and requires energy that my body lacks. The muscles in my neck become strained and ache, and I can't fight the wave of irritation that swims over me.) and the TV was on. I had to turn off the TV, turn off the dryer, and wrap the conversation up quick.
I put in the earplugs.
:)
For some reason it did not occur to me that I could use these lovely things during daylight. They work beautifully! I can hear, and it's still loud, but it's also a relief! All of the things around me are not screaming for my attention. This must be what it is like with normal hearing. :) I do not hear EVERY crinkle, footstep, etc.
It's like a vacation for my eardrums!
Since my FREAKOUT galore last night I have been musing on everything. I compiled a list of things I am thinking about. I have been in a grieving process for about 4 months. Sick for almost a year, but not knowing it was fibro until around June/July means this is all very fresh. I did not realize the sense of loss that accompanies a chronic condition. The world has changed for me. This is new. This is something I am going through RIGHT NOW. It's a work in progress.
Side note: my medical goal right now is not to see the rheumatologist for medication to treat fibro. I have read numerous articles about the 2 main prescriptions they give for fibro and I do not want cymbalta or lyrica. Most people report that both do not have long term benefits. There are side effects that are terrible, and quite honestly, I've never been one for pills. These patients primarily report that symptoms fade for a day or two and than come back with a vengeance. I'd rather alter my life to a condition that is long-term. Life. Until Jesus heals me, I am stuck with this thing. There is no magic cure. There is no 24 hour fix. I take supplements and I am changing my lifestyle as I discover what my body and mind will allow, however, I refuse to take pills that will potentially hinder me and enhance the negative aspects of a chronic condition. No thanks. So, my goal in finally landing an appointment with a rheumatologist is to rule out other possible health issues. I want recent lab work (my last labs were in May), and I want to verify that another disease is not demanding attention. Usually fibro is secondary to a primary medical condition. We'll see.
So here is a list (so far)of what I am committed to changing:
I WILL-
-change my speech to include the positive things in my day.
-refocus my mind to train on things of substance, virtue, and godliness.
-keep my priorities in check and eliminate what is not crucial.
-spend more time thinking and speaking of happy things vs. continually talking about what is happening to me.
-take frequent breaks if needed.
-wear these earplugs a lot during the day.
-incorporate some form of extremely moderate exercise back into my life.
-be realistic about my goals and limitations.
-take "time-outs" in order to collect myself whilst overwhelmed.
-recognize, admit, accept, and grow vs. not over think or dwell on the fact that sometimes I will snap unwillingly. I will apologize and move on.
-speak about my pain only when asked and keep it brief. (Example: "I'm out of commission").
-attempt to engage with others vs. the continued pull to isolate. It's hard to talk to people- my mind has issues processing their words and other noises (be it the hum of a fridge or the sound of a fan) make it harder.
-be clear and honest about what I can and cannot bear during a "bad spell."
i.e. no visitors without prior notice, not explaining directions or giving instructions (it scrambles me up and a feeling of panic and intense impatience and annoyance happens without warrant), be CLEAR and firm about how being on the phone is not okay right now (obviously appointments and family calls or whatever will come up, but this MUST be extremely limited) and that text or email is what I can do right now.
-eliminate ALL stressful forms of media. Watching dramatic, angsty, or violent images DOES produce a physical reaction.
-find (or develop) a chronic illness support group.
-journal my negative feelings (and pray with more intensity) so as not to feel overwhelmed and snap later.
-work on accepting each new challenge and be verbal (with my people) about the limitation.
-NOT FEEL GUILTY for being sick (HARDEST ONE on this list).
-change my eating habits to eliminate sugars and caffeine and carbs. Doing so will help reduce inflammation and such.
That's it for now. If more goals arise, I will try to remember to post them.
Current state of sick:
legs are cramping
bloated (my Auntie asked if I have edema)
fatigue
pain everywhere (*Important to note: the pain moves all over the body. It has no favorites. If I am touched on my leg, I may feel the intense pain in my ribs. It moves and shifts each moment, so I may appear "fine" and suddenly be bent over in extreme pain. I cannot control it. It's way inside.)
super duper sensitive to sound today. More than usual. Yikes.
mentally drained
After my immature freak out last night I am due for some silence. I am embarrassed and appalled that I could act that way. New day, new way.
It's a wild terrain. ;)
Goodnight!
