A Rough Fibo Weekend - Sensory Processing Disorder SPD

It was a very full weekend for me. I was able to watch my Grandson play soccer, and attended a family get together all in the same weekend.  That may not sound like a full weekend to most but to me it was WAY too much. I have been mostly housebound for a couple of years now due to my Fibromyalgia. I am occasionally able to go out but it is in a very controlled environment.

My Fibromyalgia also includes Audio Sensitivity and Sensory Processing Disorder SPD. Yes, I have a lot of issues don’t I? It seems even my issues have issues. Lol (More on Audio sensitivity in another post - it is the main reason I’m housebound.) For today’s post I will address the Sensory Processing.  I believe there are a lot of people who suffer from this and do not realize what it is.

Sensory processing issues happen because the brain has trouble receiving, responding to and organizing information from the senses.  In a nutshell, I become overwhelmed by too much stimulus. Loud noises are my worst symptom, challenging to put it mildly. I am hypersensitive to sounds, smells, light, flavors, textures, temperatures. They all agitate me to some degree. This affects my focus. I have trouble following conversation going on around me. At the soccer game I had trouble following the game. (I kept cheering when the other team scored Lol). Between conversing with those around me, the crowd noise, following what was going on with the game, it’s a good bet it will lead me to a complete overload of my senses. It causes problems with motor skills – I’m clumsy, I stumble or fall, slur my words, bump into things and am unable to tell where my limbs are in relation to space (getting fork to mouth). One of my first warning signals is I begin slurring my words. Next comes what I call “stumbly” I am become clumsy.  

We all receive a steady stream of sensory information throughout our day. Most people can “tune out” or “filter” that information. My brain struggles with that.  All that information coming in overwhelms me, causing what I refer to as “Blue Screen”.   Like when the TV is no longer receiving a signal and the screen turns blue. That is what happens to me when I am overloaded-overwhelmed.  My brain and my body say enough already and it switches off. I assume it’s to let my brain cool down.  Sometimes it’s for a short time, like when the power flickers. Other times it’s for a much longer period - like weeks.  When I’m like this I call this Blue Screen or Fogged In.   

I am hypersensitive to noise. I hear things most people “tune out” like the refrigerator running for example.  I sometimes have to leave the room because it overwhelms me and my pain shoots through the roof. Common sounds are painful (I’m often asked if it hurts my ears. The answer is no. It translates into overall body pain).  My husband, John, doesn’t even notice the sound, he’s “tuned it out”.

So back to my weekend… Saturday, was the soccer game. I find when my senses have been overwhelmed if I come home and immediately go to my room and lay down it helps my “jets cool”. Darkened, quiet room, in bed, for an hour at least will sometimes (I say sometimes because just as often this will not work) begins the restorative process.

Saturday, I came home and went right to bed. I knew it was going to be a bad evening, because the pain was climbing on the way home. I had trouble understanding what John was saying. I definitely was not coping. However, after my “quite time” I felt a little better. The pain has downgraded marginally and I was able to track with what John was saying.  I had Painsomnia, I was able to get about 5 hours of sleep – not bad for the afternoon activities.

Sunday, was the family get together and I broke my number 1 written in stone rule.  DO ONLY ONE ACTIVITY per week. I analyzed where I was Sunday morning and knew I should stay home because my pain was high and my coping was low.  But, I had been looking forward to this for a couple of months and decided to go but modify my attendance.  I went late and left early. I wore my noise cancelling ear buds. I took my cane because I was “stumbly” before I even left my house.

I knew I put myself in a flare.  I knew there was a good chance of this when I decided to attend on Sunday.  I counted the cost and decided it was worth it to attend the family event. 

Monday, I woke to a major flare. It was a mostly stay in bed day.  Pain was extremely high. Weather-brain forecast was dense fog. A “Socked In” kinda fog.  I went to put in a load of laundry and couldn’t figure out how to turn on the washing machine. I walked away and went back to bed. For dinner, I was helping John and couldn’t figure out how I was going to warm up the cornbread. (Note: it was already cooked I just needed to reheat it). I couldn’t decide what to put in on. A plate, a pan, or just stick it in the oven. I finally worked out that I could microwave it and placeed it on a plate. Then I couldn’t figure out how to turn on that tricky beast. All those key pads with numbers to press - Holy Kamoley - I was in a bad place.

So this is my life. I have learned to assess at all times. What’s the temperature? What’s the noise level? Will there be people I need to converse with?  Will I need to navigate through social interaction? Will I be able to remove myself from what’s overloading me or will I just need to try to cope my way through it? Will I be putting myself at risk walking or moving around?  Assess and reassess. You may be asking about now “was it worth it?” Yes, it was worth it! I got to leave the house 2 times this weekend. I got to spend time with the ones I love most in this world. I did “pay for it” but I knew I would before I went. The only question really was how much would it cost me. I had already planned on dialing back the beginning of the week to allow for recoup time. In looking back the equation is 2 afternoons out = 4 days recovery. As far as flares go it was really a mild one. I have found it is all a balancing act. I am grateful for the time I had with loved ones this weekend. Trying to count it all JOY.

Do you suffer from any of these symptoms? Leave me a comment. 

These are a few resources I have found helpful. They are are also in Resources located on the top bar. 

www.brainbalancecenters.com

www.understood.org

www.webmed.com

Starlanyl, Devin, and Mary Ellen Copeland,2001, Fibromyalgia & Chronic Myofascial Pain A Study Manual

You can purchase my Coloring Notebook/Journal here:  http://amzn.to/2jeGh26

www.TheBlueScreenBlogger.blogspot.com







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