Writer, reader, person living with a disability, cat-mom, learner, mystic. J.D./Ph.D. from Ohio State. Can be found writing a speculative fiction novel, or about women's soccer and life with chronic pain.
Tbe governor of Illinois has just orders all restaurants and bars to close. They are allowed to do curbside pickup and delivery still. He said the federal government was not doing enough to protect us so the state had to.
S. (my husband) did a Walmart run. Things sold out: toilet paper, hand sanitizer, paper towels, eggs, kitty litter, and meat. He said people were just filling their carts from the freezer section. He talked to one of the clerks who said yesterday was terrible. People were just coming in and dumping things in their carts and running to the checkout. Then they would load their cars and return.
My day was quiet. It seems like the world is going crazy while I sit on my computer writing, stopping occasionally to pet cats. I watched birds at the feeder and saw a pretty little wren. Started putting away the groceries S. got. By the way, we are totally prepared with roasted red peppers and cat treats.
We came over to visit J. (my best friend) and K. (her husband) again. The girls are bored and going stir crazy. Last week was Spring Break and they are missing school – before an actual day of school has been missed. I am going to help teaching them, so we are trying to get a schedule together. I’ll likely help out a lot with math, which luckily they both love.
The guys are making risotto for dinner and I’m in the comfy chair under strict orders from J. to stay put. I ran out of CBD a few days ago (and we can’t afford to get more. Between that and the low pressure rolling through my pain has been higher than normal.
The world has been changing quickly – especially in terms of health. My life hasn’t changed much. I was rather self-isolated in the first place, unable to do work other than writing from home. And then stuck in the house because we’re low income and my husband has to take the car to work. I’ve been watching the world through my computer screen. I see more and more people facing down a life like I live.
People are stocking up on toilet paper and hand-sanitizer to the point where there are none in the stores. I have friends in other areas going to Walmart and taking pictures of empty shelves. Meanwhile, the CEO of Walmart takes a press conference with the president of the US stating that he will gladly give up part of some parking lots to fight Covid-19. How strange. I assume the government is setting up testing centers there, but that wasn’t made entirely clear.
Last week, I went to see one of my doctors. It went normal, except there were bottles of hand-sanitizer all over the place and after she was done seeing me, she washed her hands for a really long time. Most things around here seem normal. But, then, I haven’t gone to Walmart. There were a lot of cars in the parking lot.
My husband is going to start working from home – teaching a class and doing counseling sessions online. All the schools are closed for the count. Which means my best friend is teaching online from home – but she might go into her office because she has not yet been blocked from doing so. Her husband is at community college and their classes are moved online. The girls will be home from school as well. I offered to help home-school them during this time. We went over to their house a couple of times. I figure our homes will still be connected until someone in them gets the virus.
We went to the library this morning and took out about 20 books between the two of us. I hear from my friends about libraries starting to close down all over the place. If I’m stuck at home for a long time, at least I will be stuck at home with books.
The good news is that I survived the holidays just fine. The holiday season is rough for many of us, from the expectations we have for ourselves to the physical reality of getting through gruelingly long days. Here is a list of the little things I do, that hopefully can help anyone make it through a long, stressful day.
Stake out a quiet corner, preferably with a comfy chair. You don’t have to stand up and be circulating all the time. If you are brave, take a chair into the middle of the action. Not so brave? Pick a quiet corner and let the party come to you.
Let other people do things for you. They can get you a drink or bring you a napkin. Many of us feel like we are burdens to others – but often that’s just in our heads. People love to help, but they don’t know how. It’s up to you to give them instructions.
Take a minute when you need it. If you are getting overwhelmed, close your eyes and just breathe in and out for a minute. Focus on your breathing and not on anything around you. Sure, folks might think you are odd – but, really, don’t they think that already.
Celery. When people gather there is a pressure to munch on snack food. And, yes, it’s great to try the cookies. But many of us cannot handle too much sugary or fatty food. (They tie to inflammation). My friends know that I always appreciate a bowl of celery, cut short – the size of popcorn. You will certainly find other people who want a break from the sweetness. Cucumbers and (actual) popcorn are also great snacks to keep on hand.
A pashmina scarf is great to have on hand. It’s my temperature regulator. I can take it on and off, tie it around my neck as a scarf, drape it over my shoulders as a shawl, or use it as a lap blanket. They are so soft, it also doubles a my comfort object that I can rub between my fingers when I get anxious.
6. Lower your expectations of yourself. This time of year I always feel the pressure of doing things perfectly. It took a while for me to look around and see that others did not have that expectation of themselves. You do not need to bring the most gorgeous and tasty cake that ever existed to the party. Go for getting it done (in whatever state its done) or planning it enough in advance that you can pass it off to someone else if you cannot get it done. Or buy the cake if you need too – everyone has done it once in a while.
7. Remember you can run away if you need to. Or decline invitations. Or accept an invitation and not show up. (But send a text if you are able.) Miss Manners wasn’t writing about people with chronic pain. Sometimes you need to be a rebel and live by your own rules.
The worst of my pain lives in my neck and shoulders. At times, the muscles seize up so badly that I cannot move them. We always joke that it’s the weight of the world on my shoulders, but that has a truth to it.
When this happens, the first thing I do is lift my shoulders up – like I’m asking a question. Or more likely that I am trying to hide from the answer. This move counteracts the weight that I feel and breaks the block on movement. Yes, it hurts, but as I work them up and down a few times, I feel like blood and energy is flowing again.
Next, I push my shoulders back and my chest out and think of Dolly Parton. Yes, this move is easier in a secluded or private place, but pain is pain and I have gotten a pile of strange looks for this. Push your shoulders back and down and hold for 10 – 30 seconds or whatever feels good.
After some stretching, I break out the Thera Cane. A Thera Cane is a long, sturdy plastic stick with a curve on top. It looks a bit like a walking cane, but it’s probably too short to walk with. (Way too short for my 5’6″.) It has a host of knobs sticking off of it from a number of places. It looks, more than anything, like the frame for some plastic toy parts after all the toy parts have been punched out.
Find whatever knob allows you to reach the sore part and use the other parts of the cane to apply pressure to the sore part. Yes, this hurts – but it relieves much more pain in the long run. It is like getting a massage (only cheaper and you have to do the work yourself.)
I lift and replace the cane on my neck again and again until all the lumps are worked out. I’ll then use the Thera Cane to get my feet a little bit or any other body part that feels tense or painful.
When this is done, I’m exhausted and ready to flop back into my nest on the sofa and be quiet for a while. At least for a little bit, the weight of the world is no longer on my shoulders. The next trick is to figure out how not to put the weight back on. I’ll report back once I have that down.
P.S. I’ve linked to Amazon in order to cover some of my expenses (hopefully). So I think that the link to the Thera Cane is part of their Affiliate program. If I did it right.
Pain can hit suddenly – any time or place. Of all the things that work during a pain flare – vacuum cleaner breathing comes in the fastest and the strongest to get me through emergency times.
This is a meditation exercise, but you don’t have to call it meditation for it to work. It is basically a combination of intentional breathing with a very basic mental image. You will want to practice this during times that you are feeling in control – such as a minor pain at home. Once you’ve done it a few times, you can pull it out even under times of stress to dampen the pain.
First, get yourself comfortable. Sitting in a place where people won’t bother me or think I am strange for closing my eyes is a start. It might be easier for you to lie down. It might also be easiest to find a place that has a nice light in front of you.
Next, find a spot upon which to concentrate outside of your body. Most people choose a “third eye” that sits just off your forehead or above the top of your head. Mine is about a foot above my forehead and six inches forwards. Yours might be three feet forward from your heart. Location doesn’t matter, just find a place that you can feel comfortable locating again and again.
Then, close your eyes and breathe regularly. Pay attention to the breath coming in and out of your body. Imagine a loop that starts outside your body and travels in toward your pain, then leaving your body again. You are going to be breathing around this loop.
Start with a spot outside your body that has light or clean air.
Breathe in pulling that light into your third eye.
Keep breathing in (this is a fast set of steps) and pull that light and clean to the part of you that hurts.
Breathe out, grabbing a little bit of the pain (I imagine it as dirt) and pull it away from the pained area.
Pull that pain travels outside your body. I breathe it straight out from the spot. If you prefer a closed-loop, you can follow where it came in and send it out the same way.
Feel the pain leave your body and disperse.
Repeat until the pain is gone or at least reduced to manageable levels. This happens when all the bad stuff around the pain is out of your body and it’s place is taken by good energy that can help you.
I pull out this tool and use it daily. Sometimes this is to bide time until something else happens (e.g. pain meds kick in) and sometimes this is enough pain control in itself. Do not expect to rise out of your chair pain free and a new person. But, this is one of many things I do that work together so I can get through the day.
I learned a version of this in yoga class and adapted it to my needs with chronic pain. If you like this, you might want to look into yoga. Not the twist both legs behind your neck yoga, but gentle, restorative, and therapeutic yoga all work with breathing and the body.
Questions? Ask below. I am eager to fine tune this writing so it is understandable to everyone.
My orthopedist handed me a scrip and said, “Get a cane. It will help. Do you know how to walk with one?” And my cane adventures began.
I’m 48, which is too young to be running around with a cane all the time. But, my knee hurt (arthritis), and the doctor showed me how to use a cane and that really took the stress off and relieved a lot of pain. I converted to the group of the cane people.
My husband sometimes uses a cane – just for show and affectation. He has an Irish blackthorn cane which doubles as a shillelagh. He has a tall, twisted Gandalf staff. Those were far to heavy for me to use for long. He has some speed-walking double sticks. I turned myself into a pretzel trying to use those.
Next, we headed down to the pharmacy – I had a prescription after all. In the assisted-living section with the big raised toilet seats sat the canes. These were lighter and maneuverable. Some even collapsed for small storage. But, to a one, they were ugly. Metal, black, the prettiest one was blue. I knew if I chose one of those canes, I would just look sad.
So, I went onto the internet – source of all things wild and interesting. And and boy did they. I was swept away into a world of dragon canes with crystals mounted along them. Canes that hid knives or flasks. Canes that transformed into a stool for sitting. But all those weigh too much.
I searched collapsible metal canes and that brought up more of what I wanted. They had hot pink canes, canes with playing cards printed on them, blue canes with yellow racing stripes, and one cane with gorgeous peacock feathers printed down in. And that one was marked half-off. I figured if I am going to have a cane – it should be bold and pretty – just like me.
Here it is, isn’t it pretty!
It’s a complement getter, especially from other people with canes. I wonder what Freud would say about cane envy? (Oh, yeah, first guess is probably right.)
I have always enjoyed watching the birds. The come and go, quarrel with each other, and sometimes even watch me back through the window. I have a feeder set up so I can see them from my nest – the seat on the sofa surrounded by all my things. We get tons of cardinals who nest in our yard as well as a large variety of sparrows.
I used to go to the Sugar Grove Nature Center in Funk’s Grove, Illinois (great name, huh) to watch the birds and hike. Of course, I was feeling better then. I used to love winding out around the trails in woods and prairie. Today I cannot hike, but am working to get that back.
Sugar Grove had a room where people could watch the birds (and chipmunks) through a floor-to-ceiling glass window. This is of the utmost importance – because it let everyone have a nature experience no matter their mobility. Anyone could walk, hobble, or roll into the room and take a comfy seat surrounded by windows covered with one-way glass. You could pick up a bird book, look around the room for pictures of common seasonal birds, or just relax and enjoy the show.
They set out specialized food to bring diversity. Sunflower seeds are the perennial favorite, but they had a finch sock, fruit or jelly for orioles, hummingbird sugar-water, suet for woodpeckers, and several other specialty foods. The variety of foods attracted a number of birds who normally don’t feed together.
Chipmunks were everyone’s favorites. (Yes, I know, not birds). These critters would dart around the area, munching on peanuts and playing in the running water. I bet they thought they hit the lottery by finding the feeding area.
Watching birds is therapeutic. I have always loved being outdoors. My favorite thing used to be removing turf for a garden – it’s quite a workout. I cannot get out in nature as much as I used to. I can bring some to me, feeding the birds.
This summer I flew to Maine. I carefully packed my carry-on with all my medical stuff. CPAP for sleep apnea*, a large bag of pills, some comfort items. I packed snacks because I am supposed to eat several small meals daily. I brought along my folding cane, so it could help me into the airplane but still fit in a seat-back. My laptop had to go in the carry-on as well. No problem. I brought a small purse and made sure I could manage hauling everything I had.
My first two flights went exactly as planned, and I was starting to feel good about traveling. My third flight (of three) is where things went downhill.
I boarded early (my cane gave me that privilege). I stepped out of the boarding area and saw a plane in front of me with a huge metal ramp leading up to it. That was not going to be easy, but I steeled myself and started painfully pulling my carry-on up the ramp.
About halfway up, a flight attendant called out to me, saying I had to put my bag on the cart at the bottom of the ramp. I told her that my bag was full of a CPAP, medicine, and things that had to be carried on. She said my carry-on would not fit in the overheads. I would have to take everything out of it that had to go on the plane.
I made it (painfully) back down the ramp and started to unpack my bag. The flight attendant re-appeared with a plastic bag that she said I could use to put my stuff in. But she stood in the door of the plane. I had to trudge all the way up the ramp – at least without a suitcase this time – take the bag, and go back down to my bag to finish unpacking.
At this point, the regular customers are boarding. They are also upset about having to check their carry-ons and are hauling them onto the cart around me unpacking mine.
I unpacked the CPAP bag and put it over my shoulder with my purse. I took out the pills, computer, and a couple of other things and put them in the plastic bag. I then closed my nearly empty carry-on on the cart.
Now, I have a cane in one hand and a plastic bag in the other. I have two bags around my neck and shoulder and am highly off balance. And I have to go back up the ramp this way. And through a busy cabin, slowing down the boarding process for everyone behind me. And then haul two smaller bags into the overhead bin above my seat.
At this point, the flight attendant approaches me and apologizes, but tells me there is nothing else she could do, as my bag would not fit in the extra-small overhead space.
I laughed. What else could I do? This is flying with a disability. I folded my cane and put it in the seat back, not looking forward to the repeat of this process when the flight was over.
What could she do? She could have found someone to help me with my bags up and down the ramp. She could have run the plastic bag down the ramp herself, it would have saved time. She could have assisted me in carrying my multiple bags (now) into and out of the plane. The gate agents could have explained the situation to me before I boarded, so I had time to resettle my belongings.
Yes, I know they are supposed to allow me to fly with the CPAP as a “free” carry-on. But they don’t. I’m not certain what I need to do to get that clearance, but a doctor’s note and a prescription doesn’t cut it.
opossum is my animal guide. Yes, the possum. I know other people have stags, horses,
and wolves, large impressive and imposing animals. Well I’m not impressive or
imposing and I take strength from knowing there is an animal out there who is
like me: quiet, avoidant, and underestimated.
some lessons I have learned from the possum:
Come out at night or when you feel safe. I don’t
have to leave my house at rush hour or shop at the busiest time of the day. I
can go at 6 am if I like. I set my own schedule and do not have to live
according to the times that are most popular.
Eat ticks. Yes, ticks. My experiences living
with pain have taught me to deal with far worse things than ticks. Heck, I can take
on any number of icky things and make them work for me. Favorite TV show
cancelled? I’ve been through far worse. Dentist’s visit? Bring it on! I can eat
ticks with the best of them.
Play dead. Oh, I am so good at this one. When a
possum is frightened it stiffens and falls over, so predators won’t bother it
anymore. Pain gets high – I’m on the couch or in bed not moving. And that’s ok.
I can do that until the predator, or the worst of the pain has passed.
Scream if you want to. It’s a great way to get
out both annoyance and aggression. And when it’s done, I feel a little bit
Be resistant to rabies. Okay, I am not actually
resistant to rabies. But I am resistant to a lot of stuff. When I got my
tattoo, it didn’t hurt. I was used to much more pain. Massive bruises down my
leg, I don’t even feel them. Having a baseline of pain is a shield. Most
additional experiences cannot top it, so they are subsumed inside my pain and I
can’t feel worse.
Eat trash. Perhaps not every day, but sometimes
Cheetos or ice cream are necessary.
A possum may
not be your guide. How about an armadillo with tough armor and a soft underbelly?
A starling, running around with its group of friends and family? An eel able to
slip and slide through all difficulties? We are, perhaps, the strange and ugly
animals in the world. But these animals can teach us to know ourselves better
and use what we have.
Hi. I’m Heni and I’ve been living with chronic pain for a very long time. And I’ve just about reached the end of my rope more times than I can count. At my last doctor’s visit, and yet another, “We can’t do anything about it except give you more pain pills.” I thought I was going to choke. Then I decided I could write about it – and share everything with you. I have fibromyalgia and arthritis – but I want to be inclusive – looking at all types of chronic pain.
I am on a journey to find out what works, even a little bit. I am going to write about it here. Send in your things that work, even a little bit, and we may build a resource here.
Things that work (even a little bit) so far
The Great British Baking Show
sock filled with rice
yoga – only sometimes
I’ll talk about these as we move forward. I’ll also talk about my continuing effort to find relief and other issues around living with pain. Send in your stories or suggestions and I can blog on that, too.
Also, I find strength in my animal friend the Virginia Opossum. Expect them to pop up regularly.