This is a continuation from Part One… re: SPD = Sensory Processing Disorder, or Dysfunction.
Thank you to those who have listened to and encouraged me over the years/decades, both prior to learning about SPD and even now. And to those who go to great lengths to reduce my exposure to triggers in their presence, in my home or in theirs, I am deeply grateful.
There are no meds that help with SPD. Believe it or not, there are “experts” who believe that one must simply continue to expose oneself to become accustomed to the triggers, as if they will eventually go away. This works for some, but not all. I can tell you the approach does not currently work for me, but has only made me feel worse. Granted, I’ve always had to find alternative ways of getting by, such as finding a seat with the window glare behind me, choosing different shampoos/deodorant/etc., and cutting out chemicals when cleaning my house. The list goes on and on. However, as the number of people increases within close proximity to me, whether just on the edge of my personal bubble, or upwind by breeze or draft, this drives up the threat to my health exponentially. That’s the state of things currently, anyway. I am optimistic that the effects will decrease in magnitude, after I can recover from some very significant stress overload.
About all I can do is try and control my environment, but there are so many variables besides SPD that are out of my control. One huge variable that affects me is the weather (i.e., barometric pressure). Another is fluctuations in hormones.
Perhaps the worst variable that contributed to crippling me in the past year was accumulated adrenal fatigue, mainly from the stress of my last workplace. That in itself is difficult to rebound from, but it has magnified the symptoms of SPD, and I am experiencing a long list of symptoms besides, indicating leaky gut, chronic sinus infections, fibromyalgia, and more.
Most of the time I’m staying at home, either inside my house or in my yard. No, I don’t sleep in, or take naps. In fact, I have a hard enough time sleeping well during the night, and I go to bed at roughly the same time every night. I don’t take meds to sleep because they only cause more problems and don’t help me sleep at all. So, the amount of sleep I am able to get is a huge factor as well, but it’s awfully difficult to sleep when I am experiencing pain and other reactions.
There are five basic sensory systems that everyone learns in elementary school: 1. sight (visual); 2. hearing (auditory); 3. smell (olfactory); 4. taste (gustatory); and 5. touch (tactile). Additionally, there are 3 other senses that hardly anyone knows about: 6. vestibular (re: motion, movement, balance); 7. proprioceptive (re: sensations from muscles and joints of the body); and 8. interoception. For helpful info, this resource explains the 8 senses (without all the ads).
Imagine how the human body takes in information from the senses. People with SPD can have hyper- (over) or hypo- (under) sensitive senses, or a mix of these along with some senses that actually do function as they should. However, my current experience is that most of mine are hyper-sensitive, especially smell, light, sound, and the vestibular sense. Some of mine started out hypo-sensitive and changed to hyper-sensitive. I have learned how to adapt in many ways over the years, but there are times when my tolerance gets tapped out. And there are some things I simply cannot tolerate at all, ever (like chemical fragrances, but even some of the natural scents, like blooming hyacinth flowers – I grow them outside but they stay outside).
Some of the effects for me are: crippling migraines, with accompanying nausea, dizziness, short-term memory retrieval issues, and cognitive confusion. I lose my ability to engage mentally in a project/activity, to socialize, to recall everyday words to express myself, and to do simple things like read or listen to music (I will spare you the exhaustive list). All I can do is muster up enough strength of purpose to think of a place to lie down – a dark, quiet room away from everything, with minimal exposure to anything sensory, if that were possible – and then I might need to crawl there. If I’m away from home but lucky enough to have some warning and enough time, then I will drive immediately home, or at least go to my vehicle. Otherwise, I’m stuck. It takes several hours, at least, for me to feel better. Often, the effects last for many days. Complications of barometric pressure and hormonal fluctuations will exacerbate the effects and one episode can continue for a week, only to return without much relief in between.
When I have those days or hours in between during which I feel “better”, I often feel elated and just want to enjoy myself to the fullest, but it doesn’t happen that often. I really do like to be around people, and I try to make the best of it, but there are only a few places besides my own house where I can feel safe. I try to make memories with my family. I want to make sure there are good times with them to remember. Being down and out for the count can be so isolating and depressing, and I certainly don’t want to stay in that pit.
I love the outdoors, being near or on water, or walking a decent trail, and I bring my camera with me to record my experiences or sightings. Some of the sightings end up in my paintings. 🙂
Another one of my favourite things to do is to write. Writing and painting are incredibly therapeutic activities for me. I have to be creative. This is why I recently went to my first meeting with the Muskoka Authors Association (MAA). I inquired just over a month ago, after knowing about it for quite some time, but I felt like it was impossible for me to get involved in anything of interest, because I would just have to pay for it with my health. Someone told me I should at least inquire about whether they have a scent-free policy, since that is usually the worst trigger for me when going to a social event. Well, I did inquire, and the answer was not yet, but they were willing to consider making a policy. Unfortunately, I ended up with a migraine that day, which prevented me from going. This month I was determined, once again, and I was feeling okay right up to a couple of hours before the event. I knew a lot of rain was in the upcoming overnight forecast, and I could feel the pressure building in my head. I took Tylenol and persevered.
I want to sincerely thank the executive of MAA for their willingness to make me feel welcome for that meeting and future ones. I don’t think I had any additional reaction from scents that night, which was the issue they addressed. In fact, they announced a new scent-free policy at the beginning of the meeting and said it would be sent out in an email to the membership. I am not the only one who brought this up, because a guest had done so at the last month’s meeting, so my timing was right for a change. But still, as I heard the announcement (well-spoken, I might add), I just wanted to hide. If only people knew that I was sitting there thinking, “I’m sorry. I’m so, so sorry that I seem so demanding and anti-social. Please, don’t anybody be mad or resentful about me.” I’m not sure how long it will take to join in with the group without having those thoughts, but maybe after I have a sense of belonging there. No one knows me yet, but many were friendly.
Not to put a damper on things again, 😦 but of course, as I said, I arrived with a migraine already in process, but I did react to the lighting (visual sense), and at the end of the meeting, because I didn’t leave soon enough, the sound of the chairs and tables being moved were grating on my senses too (well, I was trying to be social and talk to another member, and others were just trying to clean up!). So, it wasn’t the scents this time. Instead, it was the lights and sounds. It’s nobody’s fault. I’m merely stating facts, just so people can attempt to understand, if they are willing. That was Thursday, and I was sick with severe migraine and nausea after the meeting and right through until Saturday afternoon, and for all I know it might have had nothing to do with being at the meeting. All I know is that often the factors combine to overstimulate me, and it takes quite a while to recover. Thankfully, I had improved enough to sit with our company who had arrived on Saturday and had travelled 4 hours to visit with us.
The most difficult thing about SPD, over and above the crippling effects of the disorder/dysfunction, is how much I have to ask others to go without, just so that I can be involved in something with them. When they are willing to go to that extent for me, I am touched by their kindness and I’m incredibly grateful.
If you have seen or know my painting, “Phoenix Rising to New Life”, now you will know more of the meaning that painting has for me.
It’s the feeling I get when I see this kind of thing in nature (if you see it, and you can relate, comment below):
Thanks for reading, even if you don’t comment here, but I do hope this helps somebody somewhere… someday.
Love to you all!