Because you know 65’F in mid February in New England is totally typical. So the creepy crawlers are out with a vengeance. That said besides the ticks, it is a lovely day to hang with the crew in the yard
Because you know 65’F in mid February in New England is totally typical. So the creepy crawlers are out with a vengeance. That said besides the ticks, it is a lovely day to hang with the crew in the yard
One of the pieces of living with the conditions I do that frustrates me the most is the lack of stability. It often feels like the only thing I can absolutely count on is that it is going to change. Day to day, moment to moment. How my nervous system is going to process, respond, work to the world around me is something I can’t count on. And sometimes I can’t shove just how much it frustrates me into the back recess of my mind, the way I do most times.
I can and do, as most people, normalize a lot. But I find it hard to normalize when things are in constant flux. Now, I’m grateful I’ve gotten to a point in my life after lots of support services such as OT and lots of management and work where I can have periods, usually a couple of months at a time, of some degree to stability. They are a huge progress from where I used to be and definitely make life a lot more enjoyable, comfortable and workable.
But during times of flux, it can be really easy for me to get frustrated. When I feel I’m being forced to adjust to a new normal (that might change again tomorrow!) and I don’t want to! When it feels my body is in revolt. And nothing outside is cooperating to help my cause either, like the weather or sunlight. And my old tricks aren’t as or at all effective. When I feel trapped and limited. I get rather grouchy during the adjustment phase.
(To be clear: I will adjust. I always do. Right now, I’m venting.)
I’m presently in such an adjustment phase. And I’m really grouchy. I try not to take it out on those around me, or at least do my best to communicate that it’s really not about them. I try to make myself smile as I talk to or pet the dogs, because it’s really hard for me to sound or act nasty if I’m smiling. I feel bad as the dogs also adjust to my new normal. Yes Zora, you’re right 2 days ago, if you stood there I could still see you and not trip over you. Now I can’t and I’m sorry I stomped your foot as a result. Yes Tom, thanks for double checking I really get what you are telling me, I’m sorry I was grouchy about it to you, I’m frustrated that I can see and process even less, but am grateful you are so used to this and flexible.
Some days life with SPD pisses me off more than others. Now is such a time.
I’m having a bit of a sensory moment. Ok more than a moment. A sensory few days.
Beau, stop breathing on me.
But, Miss Katrin how will I know you love me if I’m not Right Here?!
Beau, get out of my face. Stop. Breathing. On. Me!
I get up and move away.
Whining now. Getting even closer.
But, Miss Katrin. How will I know you love me if I’m not RIGHT HERE?!
Beau, stop whining and stop breathing on me. I’m having a day.
But, Miss Katrin. How will I know you love me if I’m not Right Here?!
Beau, how about right now I don’t love you in my face?
What?! You don’t LOVE ME?!
Ok, ok, I’m sorry. I do love you. (I pet him and remind him I really do love him.) Just can I love you from 2 feet away?
Harrumph. Fine. I will lie right here at your feet. 2 feet you said. Here are your 2 feet. See, I’m not touching you. Shoes don’t count.
It’s gonna be a day. I can feel it already. Gonna be A Day. Sigh.
Fall is really one of my favorite seasons. Depending on the year it can be a toss up between fall and spring for me. I find the season change mentally refreshing (physically, ugh, my body hates season change, but mentally I need them). I can’t imagine living somewhere without seasons. The cold snow of winter, the humidity of summer, the growth of spring, the leaves of fall.
Seasons remind me that everything is cyclical and everything is finite. Wait long enough and things will change. Be aware of patterns. Be prepared for things to change and for them to come around again. Value what is here today. Tomorrow will be different. I find seasons comforting, and reminders to be mindful of now.
Experiencing the seasons at ground level is one of the many reasons I love our woods walks. Feeling the temperatures change. The smell of fall rolling in. Hearing the species of birds shift. The leaves falling to the ground. The crunch of acorns under my boots. Being outside in the elements, feeling it all as it occurs.
The cooling temperatures, the falling leaves, the shifts in daylight also signal it’s time to grab the orange vests off their hooks when we walk. Safety first. It’s hunting season. Zora with her little bunny rabbit hop and white tip of the tail. Tom large and black. We all gear up before our walks. Vests for the dogs. Hat and vest for me. The hunter orange signaling we aren’t prey!
The dogs associate their visibility vests with walks in the woods. They eagerly shove their heads into them when I hold the vest up. They stand patiently waiting as I clip the buckles under their legs and belly, ensuring the vests stay on. Bug spray is then applied, and we’re off.
As we walked today, things still damp after the rain we’ve had this week, the sun hidden behind the clouds, the temperature just low enough one wants a light jacket, my friend mentioned it is supposed to be 80 on Sunday. I groaned. They said they were groaning about today, it is so dreary.
I laughed, but today is such a lovely day! It’s a comfortable day. Today is cool enough to wear nice comfy layers, a soft sweat shirt, a well worn pair of jeans, to take a walk where you don’t get too hot or too cold. Where the dogs are gleeful and happy. Where once you get home you can wrap up in a blanket, pour a nice hot cup of tea, grab a cookie and curl up with a good book or a TV program or the laptop. Not warm enough for air conditioning, not cold enough for heat, just right for a blanket. Where it’s not too grey out, nor is it bright and glarey. Where the humidity is low, where you end a walk with dry boots. It’s the perfect type of day.
Soon they were laughing too and agreed curled up on the couch with warm cup of coffee, a cookie and a tired dog sounded delightful.
A perfect kind of day.
This past weekend a good friend came by for a visit with her sister, who was recently diagnosed with fibromyalgia. I’m going on about 12 years or so post diagnosis, and she’s in the ‘what is happening to me?!’ stage seeking support. I was happy to help. It was nice to feel like my learned life experience could potentially help and benefit someone else during their time of processing and transition.
One of the main things she was interested in and wanted to talk about was my strategies for pain management. Along with how I cope without feeling overwhelmed or hopeless (news flash: some days I do feel overwhelmed and hopeless). She seemed to find these things rather useful to consider so here are some key strategies I’ve learned to practice over the years.
A disclaimer: I’m not a medical professional and don’t claim to be. These are just some things I’ve learned work for me some of to most of the time (or sometimes not at all). Your experience may (and probably will) differ.
One of the top things I’ve learned on this journey through chronic pain: it’s fluid. There is no stable ground. I’ve learned that the only thing to assume is that things will change. So it’s helpful to have a variety of strategies in my tool box. And to not become to firmly entrenched in any of them. Be prepared to wake up one morning, find my body in revolt with none of my usual go to techniques working and it’s back to the drawing board.
Yes, I find this fact (often) (incredibly) frustrating. Especially because I like, I crave stability and a status quo. Yea, not my reality. Chronic pain and an atypical nervous system definitely nudges me more toward the ‘go with the flow’ and be adaptable despite my deep resistance to it at times. The mental “should” voice and the “But I want to!!!!” or the “This is not what I imagined in life!!!!” temper tantrums happen. Which leads me to one of the other things I’ve learned is incredibly important to have: a good support system.
My support system is comprised of beings (people and dogs) who will give me a much needed reality check reminder “yea Katrin, shoulds are a fairy tale. let it go.” Listen to me when I need to scream, cry, vent or celebrate. Often not only listen but emote with me; we laugh together, cry together, scream together, empathize and sympathize together. They remind me to practice self care. They sit on me and don’t let me out of bed Tom and Zora…And essentially remind me to be nicer to myself. More forgiving. More understanding. More empathetic. My support system over the years has become filled with good peoples. For which I am eternally grateful. Along the way to the support system I presently have, I made a number of mistakes (and still do, but hopefully different mistakes). I’ve learned, let some people go, gained some others, learned which folks in my life are good at what times in theirs, learned how I can best support them, and so on. Trial and error. Relationships are always a work in progress. More fluid. It’s a theme.
A 3rd key in this for me is data tracking. I love numbers. I thoroughly enjoy maths. And data. Numbers and data make me feel in control. They make something that often feels so arbitrary and fickle more real. Data tracking helps me find patterns that I likely otherwise would be unaware of. Data tracking helps me to be proactive in my management strategies. And helps make it harder to shift into binary thinking, the “this will never end!” “I’m always in pain!” the all or nothing. The slippery fast slope to overwhelm and hopelessness. It’s hard to say “this will never end!” when you have concrete proof that just 3 days ago you had at least 3 hours where the pain was 3 points less and therefore positively not the same level.
Over the years my data tracking has shifted and changed as the need arises (again: fluid). When I was figuring out how what I ate impacted my health (more on that in a moment), I tracked what I was eating, drinking and how I was feeling. When I was tackling my severe insomnia (more on that too in a few lines), I tracked my sleep habits and patterns and how I was feeling. Currently I track my pain and fatigue levels a few set times a day against a set written out scale. So if I jot down a number 3 it always means the same descriptive symptoms or state of being. If I jot down a number 7 it always means the same descriptive symptoms or state of being. From 1 to 10 each for pain and for fatigue levels (I couldn’t find a fatigue scale I found useful so I created my own descriptions for each number). I then do weekly averages, and monthly averages (which takes the work out of those doctor’s questions of “over the past 2 weeks how would you rate your pain?”). Quarterly I fill out the more comprehensive McGill pain assessment to help over the years better track how season changes affect me. Through this tracking I’ve been able to notice patterns and trends more readily and anticipate more easily how events, weather, seasons and such will affect me. This allows me to be more pro-active and responsive and less reactive to my situations. Data tracking has also enabled me to recognize changes in my symptoms faster (cuz denial ain’t just a river in egypt for me) which has proven useful a number of times. My data tracking is nothing fancy, no computer even. Just a printed out sheet with slots for each day of the month, a pen, and a regular old calculator for the averages, kept on the kitchen table where I don’t forget about it.
When I jot down my data tracking numbers, the other thing I do is write in my joy journal. I began a joy journal a few years ago and have found it incredibly helpful for maintaining positive perspective. At the start of each year I get a small book calendar that has a separate blank page for every day of the coming year. Then every day I write down at least one thing I found joy in that day. It’s incredibly rare, even on my worst pain or fatigue day that I end up with just 1 thing. Sometimes my joy is something simple like sitting with the ducks, or snuggling with the dogs in bed. Sometimes I jot down my joy in the weather, or that I had a nice connection with a friend. Sometimes my joy is that heating pads exist or that we have electricity to power a freezer. Or just even that I’m at a present place in my life where I have the freedom to be sick and not have to worry about paying the mortgage. I’ve found after this practice day after day for a couple of years, I can find a slice of joy no matter how trivial it may seem in every single day. Which I like. It helps remind me to smile.
5th I control my diet a lot. For me, diet and what I’m eating or drinking plays a critical key role in pain management. Migraines are the easiest to control through diet for me. My migraines are triggered by a number of factors, but food is one of the ones I actually have control over. I can’t control the weather, or the barometric pressure, or the sunlight or other things. But I can control what I eat. So I do. For me diet control is the difference between 1-2 migraines a month on average and a migraine cluster only about 2-3 times a year with only as needed migraine medication, and 20-30 migraines a month and daily migraine management medication that would eventually harm my liver. To a lesser degree I manage my fibromyalgia pain through diet, but mostly my food choices are for migraine control.
6th I have over the years found a medical and supplemental health care team that works for me. My body rejects (often severely) most medications and synthetic substances, so I’ve learned (the hard way) to take the often attitude of “the cure is worse than the disease” when it comes to medications. It took me years to just find a multivitamin that my body could and would tolerate. The medical team I currently have has been through enough of my body’s rejections of modern medical medication advances to be just as hesitant as I am (because apparently they too have embraced that things like grandmal seizures, tremors or hives aren’t a placebo either). It’s been trial and error over the years to figure out how my body responds to alternative modalities like massage, chiropractic and acupuncture too. And I now use those approaches as necessary.
Practicing good sleep hygiene is also a key for me. It’s not a cure all. I mean I still laugh every time a doctor asks me if I wake up rested after a night of sleep. Rested? What’s that feel like? Hahahahaha. Yea, no. But at least I now and for the past few years (fingers crossed) at least sleep pretty regular hours. And have figured out some workable strategies. Such as: I cannot allow myself to fall asleep before 9:30pm routinely. If I find myself falling asleep at 7 or 8pm for 2 nights in a row, I have to start forcing myself through whatever means it takes to stay up until 9pm. Otherwise my sleep schedule will become royally screwed up and insomnia will quickly rear it’s head once more. Or my husband cannot come to bed on an even hour if I’ve fallen asleep before him (which is nearly always, he’s a night owl). If he comes to bed at 12 or 2am, I will wake up and then be unable to fall back to sleep for hours. But if he comes to bed at say 12:20am or 1:45am or 2:17am, even if I rouse a little, I’ll pretty immediately fall back to sleep. I also follow the routinely recommended sleepy hygiene practices of things like when to eat or not eat before bed, temperature regulation in the bedroom, minimizing technology and light, etc. For a while I also kept a strict pre-sleep routine but I’ve been able to relax on that one the past couple of years. During the cooler months, our heated mattress pad is amazing. I definitely toss and turn and need to shift a lot less if it’s on for a bit as I fall asleep. And central air was the best investment upgrade in the house I have ever done. Since that was installed I actually can sleep in the warmer months rather consistently.
8th I live a rather (ok really) structured life. The structure of this has shifted and changed sometimes drastically at various points in my chronic pain life. Currently if you asked me what any given day of my week arbitrarily looks like I can give you a moment to moment break down simply because my day to day is very routine. That routine may differ depending on what day of the week it is, but Tuesdays always look the way my structured routine is for Tuesdays, and Wednesdays always look the way my structured routine for Wednesdays is. This routine and fine balance is what allows me what I term wiggle room. Room for some spontaneity. Room to do things that aren’t routine but I really want to do. Room to plan and make space in my life for living not just managing. My routines involve parts on exercise, rest, meeting the needs of the dogs and animals in my care, social time with others, getting out of the house, meals, water, and everything else in between that many people don’t give second thought to. Some people call this managing their spoons. Another part in my structured routine life is the flexibility to abandon it all at a moment’s notice should my body demand.
And lastly for today, one of the most important management and coping strategies I’ve found: doing something I enjoy every single day. 4 days a week this is walking with my dogs. Other days a week that might be enjoying some quality time with my ducks. Or just being outside in the yard. It might be practicing agility with Zora. Or petting and snuggling on the floor with Tom. It might be catching up on some of the TV shows I enjoy. Reading a book, or taking an online learning course. It might be concocting a new recipe. Or day dreaming about changes I’d like to make to our house someday. It might be sharing jokes and laughing with my husband. Every day, even on the extremely challenging days, I try to find a way to do something that I enjoy even if for a few moments.
Practicing something I enjoy immensely: walking with the dogs and friends in the woods
Lately I often find myself the lone person grieving over our loss of winter at present. Same last year. The year before, the lone person jumping for joy at every extra foot of snow dumped on us that lovely season of storms.
My body craves, no it needs, requires, the sound dampening benefits of deep snow in winter. It needs the stable dry weather for weeks on end. It requires the break from the daily onslaught of modern noisy bright life that it must cope with every other day of the year.
This mild, warm, cold, warm, humid, rainy month of January is sending my sensory and pain systems off the deep end. The sound and light bouncing everywhere, the glare, the pressure shifts, the lack of weather stability.
The leaves fall off the trees and sound begins to bounce. Assaulting my central nervous system. Usually the layer of snow on the ground makes this a non issue, it absorbs so much of that bouncing sound. Usually the freezing temperatures make me bundle up in endless layers of sound dampening clothing, scarves and hats over my ears, fleece all over, which deadens the sounds.
Not so this season so far.
Instead I’m experiencing the full brunt of life with sensory processing disorder and yet another fibro flare. With an overwhelmed nervous system and all the fun that brings. There is much I can and do control to aid in SPD management, the weather is one critical influence I cannot. In desperation I’m full in research mode on how to better sound proof my home. To find a way to create a sensory sanctuary within these walls once more. Hopefully my research will lead to some relief.
In the meantime, I do my little snow dance. And hope each morning when I wake we’ll be blanketed in silence.
The other day I had one of my fairly routine acupuncture appointments with the clinician I’ve been seeing now going on 4 or so years. Which is important as it means she has at least some recognition and hopefully understanding of the seasonal patterns my life and functioning levels seem to revolve in. I mentioned how I can’t wait until the trees all get their leaves, as then my sensory system will finally be able to chill out to a more tolerable level once more. She paused, looked a little puzzled then clarity and responded, “That is an interesting perspective.”
Yup Life with SPD (1) aka Life of Interesting Perspectives.
Like the time I happened to be video taping for a project shots in a hardware store and then in grocery store. My mum happened to see the clips when I was processing and went, “OH! I finally get it!” She never understood why I could function fairly well in a hardware store like Home Depot but have such difficulties in the grocery store. It took compared video for her to finally get it.
Grocery store: lower ceilings, brighter more concentrated lighting often fluorescent, often very glaring off of linoleum or tiled floors, louder background music, humming of various freezers and fridges, densely packed shelves of data of various colors, shapes, smells, sizes. Rating: To Be Avoided as Much As Possible. (2)
Hardware Store (Home Depot or Lowes): tall warehouse ceilings, softer lighting, if there is music at all it is played at those higher ceiling heights and so softer and less sound bouncing, less visual glare as concrete grey floors that reflect less, wider spaced shelves. Rating: Totally Worth it to Fuel My House Projects Habit.
To go back to my pining for the trees to finally leaf out, the leaves help to dampen various sounds that increase in the spring. And help to filter the increasing daylight, glare and brightness that comes with spring and summer.
So come on Spring. Let’s get some leaves on those trees!