[Started 22 June 2022, Finished 6 November 2022, small edits 30 Dec 2022, and a note: I am not a medical expert and many of the strategies I describe here are things I researched or stumbled upon on my own as my experiences with medical professionals have been frustrating and often completely useless. This is a result of many factors which are not discussed here. Please DO consult with a trusted medical professional before deciding on a course of action for medical concerns, particularly if you experience new or increasing symptoms. Most ailments are well understood and treatable these days!]
It has been something like 40 years since I woke in the middle of the night as a teenager, in tears from the pain in my legs. Back then, the pain seemed localized to the knees, but when doctors looked there was no damage. “Growing pains” they said, though I had stopped growing several years earlier.
As I matured the number of activities I could still enjoy diminished as my physical status changed. By the time I was out of college things as simple as day hikes required some additional thought and when we had children I chose their activities based on my ability to predict both energy levels and strength. I powered through so many situations well into my thirties and forties that wiser people might have either done differently or not at all. Like most people, my resilience, patience, and general cognition are impacted when I am in pain, particularly pain that lasts over many days or weeks regardless of the severity.
Today, I make things work most of the time by limiting the tasks I volunteer for, asked for help a lot more often, letting go of “perfection” as I once knew it and becoming comfortable with “good enough.” I am very much more outspoken about what I can and cannot do, and what I need from others. Because I cut myself some slack, I find myself more able to let go of expectations for others as well.
In “my” world (classroom, yard, house), I can engineer most of the spaces for safety as well as comfort and accessibility. This year I was again able to get into the vegetable garden (with some help) and do a bit of gardening there, and I can also get to all the bird and squirrel feeders most of the time thanks to careful placement and paved surfaces. Although early in the summer I was even taking Wally for short walks on my own that ended when workers on a neighbors project chewed up our driveway, loosening the gravel so much that even Tom and our children found it difficult to pull me back up to the house. We’ll need to come up with a different (NOT asphalt!) solution for next year…
How did I get here, and what are the specifics of my daily life? Read on…
I had severe back pain at times starting in high school, partly stress-induced, perhaps in part due to having cracked my tailbone, and probably because of inherited skeletal-muscular things as both parents experienced back pain at various times. I have several other genetic, or at least DNA-based, medical issues including things like migraines (trigeminal neuralgia runs in the women on one side of my family), allergies (air-borne, food, and contact allergies; some potentially fatal), and congenital hip dysplasia when I was born (I wore a brace for the first many months of my life). Many (possibly all?) of my joints are looser by nature than other people’s – though not considered double-jointed I have had greater range of motion and occasional issues when joints in my extremities are partially displaced or lock up. Because of this I am more flexible than most people even when I don’t stretch, and: After our children were born I experienced sciatica and plantar fasciitis for the first time… fortunately rare occurrences, but memorable!
Although I was diagnosed with some allergies as a child, they were all relatively minor (ragweed, mold, etc), transitory, and poorly-understood. We never considered food allergies, or how different triggers can affect allergies. So I was completely caught off-guard when the food allergies became the most-dangerous ones when I was pregnant in my 20s! And the insidious increase in environmental triggers for me has led to significant adjustments in my lifestyle.
Going to specifically address the air-borne allergies because they actually impact my life more than the food allergies or mobility issues (which are very much more obvious!). One of our adult children and many of my friends don’t understand why I am such a “recluse.” A long-term houseguest was being kind recently and used toilet-bowl cleaner in the bathroom they use, but didn’t turn on the fan in the room or close the door. I reacted (badly) and spent several hours in bed after using the rescue inhaler and taking extra antihistamines. I don’t always swell up or get rashes/hives in a way that other people notice, but there are many times every month that I have a reaction bad enough to need additional antihistamines, and if I am being honest there are several times a year I probably should use the epipens I carry because reactions can take a very long time to subside.
One year I became reactive to something in the staff room at school and had to be put on prednisone for the reaction to stop. When I go shopping I have to avoid places with scented products (ask me how I reacted when a salesperson once sprayed me with perfume without permission: that will never happen again with that employee or any others at that store).
I can control eating and movement away from home, but I cannot control the chemicals and allergens in the environment. Once or twice, I have had to ask our children’s guests to leave the house because of residual cat or chemicals on their clothing. And even sometimes in my own yard I am chased inside because neighbors are doing laundry, lighting waste fires, or spraying chemicals in their yards. I honestly do not know what I will do if I ever have a student who wears something I react to.
And the food allergens: I try to read labels for EVERYTHING that comes into the house: foods, cleaners, fabrics. And sometimes I miss important information. My most serious allergies are to foods – and sometimes manufacturers change their formulas but the label doesn’t specifically draw attention to the change although the ingredients are always listed. Sometimes milk products are introduced, or gelatin, or hibiscus. Those are bad days…
The other food gremlin is gluten. While I don’t have an official diagnosis of celiac (no biopsy was done and the allergen test done a decade after I stopped consuming gluten was negative), the rapid, debilitating pain, extreme exhaustion, and other symptoms in the wake of consuming even small amounts of gluten (like other allergens, sometimes I don’t know it’s there until I have the reaction and read the packaging for the third or fifth time); and a few years ago after becoming extremely “worn down” I finally had some blood tests that revealed very low vitamin D and extremely low iron, both of which often occur with celiac before diagnosis.
Becoming even more careful with where and what I eat, and supplementing with several water-soluble vitamins that were deficient I regained some of my energy. However, I noticed that my strength and mobility were still not what they should have been. Still working on this one!
Mind you, though I was never “in sports” and was definitely a bookworm, I was no couch potato as a child! I took ballet lessons from the time I was 4 until I was about 12. I rode horses from 9 or 10 until about 12. I helped a neighbor in her yard nearly every weekend through high school (Mrs. Lupher will always hold a special place in my heart). I worked in our 1/3 acre yard and walked nearly daily (often barefoot over barnacle-encrusted rocks) on the beach, and could run faster, climb higher, and lift more than most people my size and age. I also took up ballroom dancing as a sophomore – and for a couple of years enjoyed ballroom/exhibition-style dancing. Until the pain in my legs stopped that.
In those days (high school and college), pain management was generally limited to aspirin or acetaminophen (Tylenol) for children – ibuprofen was not available yet to ordinary folks. And Tylenol was off the shelves for a short time as the world learned that criminally-inclined people could and would replace medication with poisons… that was the beginning of the tamper-proof packaging that wraps medications and vitamins in three or four layers: foil cover over the top of the bottle under the lid, plastic around the lid and a sealed paperboard box (often also wrapped in plastic). Almost as soon as it was available I started using ibuprofen and found that it actually worked on the leg pain. In fact, NSAIDs are about the only thing that even begins to touch the pain. I don’t tolerate the usual opiate-based painkillers even on my very worst days…
Nowadays, I have daily pain in my hips and back – the back pain tends to occur when I spend too much time sitting. I do have some age-related lumbar stenosis, which probably doesn’t help but also doesn’t explain the hip/knee pain which preceded the spinal degeneration by several decades. The hip and knee pain shows up when I spend too much time standing and walking, or if I insist on using stairs. At this point stepping up even one or two steps can mean a couple of days when I am pretty much stuck in bed.
The knee pain is mostly gone now – but when my hips are not moving correctly (regardless of actual pain), if I don’t rest, my knees let me know. Also, when the hips are “out” my back tends to hurt more readily. Definitely these connect, but more in an egging-each-other-on way than in directly causing! So my current working theory is that the knees were never the problem, but the hips shifting back and forth have triggered the pain in the knees and also caused the spine to misalign leading to pain there as well.
Because of the migraines I use over the counter (OTC) NSAID-tylenol migraine medicine nearly daily (when I don’t have the prescription medication with me, or when the migraine gets too far along before I notice), and try very hard to not take more than the usual OTC dosage of ibuprofen, although at times when my legs are extremely painful I add a therapeutic dose (as calculated to include the ibuprofen in the migraine meds). Taking any chemicals, even prescriptions, is not ideal – but the alternative would be that I had to stay home all the time and try to find a remote work option that was flexible for my energy and pain levels.
Something I often need to remind people is that it’s not just about the pain… I also have fallen or nearly-fallen many times when my joints/legs/feet just sort of don’t connect. Many days the pain is manageable without medication. On bad pain days medication rarely works completely, but more importantly it does absolutely nothing for the random loss of stability or locked-in-place joints or altered gait or other restricted range of motion issues I also face, even on relatively “good” days. And no, I still don’t have a diagnosis. Every time I have tried, I have managed to get partway and then had to stop. The last time I tried was in 2020…
So – it’s there. It’s always a factor in my decision-making about leaving home: will there be a place I can rest if I must use cane or crutches? Can I use my wheelchair effectively (not all places considered “accessible” actually are!)? Since I don’t have a handicapped parking permit (need to see if I can convince the doctor to just write a permanent request instead of the stupid yearly ones), I need to consider if the parking lot is fully paved, and if not will there be someone with me who can park the car after dropping me off at the entrance?
At school, will the supplies I need be accessible on days that I am in too much pain to even stand? Will I need to ask for help to get the children to and from activities (I ALWAYS get a full-day sub when we go on field trips since I cannot go on the school bus, and not all spaces allow me to be with the students the whole time)? Will my wheelchair fit in the spaces I need to take the students to?
And clothing: I LOVE long skirts, full skirts, lightweight-floaty fabrics. I LOVE them, but they are not compatible with manual wheelchair use. I ruined a few garments before I realized how much a longer/fuller skirt droops (also applies to “palazzo-style” pants), and things got caught in the front wheels or dragged over the back wheels. I am STILL trying to figure out how to “history bound” in the eras that I love the materials and silhouettes but I know simply don’t work for me in a wheelchair… And why make interesting/beautiful clothes if I cannot wear them?
This year I devolved to a “uniform” with a black mid-thigh dress and various colored leggings and sweaters/jackets. The black dress is a compromise as food, drink, paints, markers, etc. tend to drop into my lap on a regular basis and I am tired of stained clothes! The black polyester is comfortable (doesn’t pull or constrict), stain-hiding, and easily cleaned. I have SEVEN of these so there are plenty to rotate through the year. This is fine for my everyday teaching…
To go to the symphony I allow Tom to push me (my wheelchair doesn’t have “helper handles”) so I can keep my feet on the footrests and wear a pretty below-knee dress and fancy shoes. We don’t go many other places, but I’ll wear jeans for casual events (I have some well-worn, softer ones that don’t usually constrict my legs) or dressier pants and pretty tops for dinners and museums.
The clothing a person can choose for wheelchair use depends so much on their own mobility and dexterity, but here are some things that really help on my worst days when my shoulders and hands as well as my legs prevent easy movement (from skin to outerwear):
- front-closing bra and full-coverage undies (so they don’t ride up or down!)
- Leggings or tights under a skirt/dress, tights or socks with pants/jeans (full/opaque coverage is important when sitting down)
- Skirt, dress, or pants that do not ride up- avoid garments that hug hips, thighs, or waist too well as they can be uncomfortable when standing to “adjust” isn’t possible
- Comfortable, front-closing or pullover tops that do not ride up (need to tuck into waistband and stay there or come down the level of the seat) and that give a lot of range of motion for arms. I prefer 3/4 length sleeves most of the time to avoid rubbing them accidentally on the tires of the chair if someone is pushing me.
- A sweater or jacket (or both!) that are a little shorter so can be easily put on or removed without standing.
- Cute shoes. Let’s face it, if people are noticing the chair, they’ll be noticing my feet. Most of the time at school I have some older, well-worn black pumps that are damaged at the tips from opening and closing door stops…. but for special occasions I have metallic, glittery, and fun-print shoes!
- Accessories that don’t require “fussing” – a scarf that won’t stay tied, or that needs constant adjusting so it doesn’t fall off is not really compatible with pushing a wheelchair.
You might have noticed a pattern in “things that don’t ride up” in the above list: most people prefer to avoid constantly hitching up things that are sliding down, or untwisting things that are askew, or trying to reduce pressure on the abdomen from things that are riding up awkwardly. Many “fashionable” garments in my lifetime look really great on models and in short clips on actors who have the luxury of stopping everything to pull something back into place and don’t get photographed from angles that reveal bulges, wrinkles, and other issues. Some stiff/starched fabrics do strange things at the neckline when the user moves their shoulders and arms. Very short skirts and pants, cropped tops, skin-tight items with or without lycra/elastane, items with slits are all beautiful and fun to wear, but for a person using mobility aids or sitting all day they can reveal more than you want with the added concern of being just plain uncomfortable and often appear disheveled. Technically I can stand to readjust garments if they move out of place but it’s inconvenient and distracting to others.
My own wheelchair I ordered at “hemi-height” which means I can use my legs to pull or push as desired, so again there are some times I might be able to wear tighter-fitting tops as I won’t need full range of motion in my arms. Many days once I am inside a building or on level paving I use only my legs as much as possible; but of course there are days and weeks when that is too much and I have to keep my feet on the footrests most of the time. So even though I might seem to have “hands-free” capability with my chair, I still have to consider the days when I have to use my arms for all of the movement.
What about outdoors?
Raingear for manual wheelchair users is a bit trickier, but there are some rain jackets that are long (stadium length) and have sides that can be opened to nearly the waist. I find this an ideal situation as it allows at least part of my lap to be covered and dry without getting in the way of arm movement or pushing myself along, unlike a poncho there aren’t sails trying to fly away in the wind and tails that get caught in the large wheels.
Hats need to have ties or other things to secure them as, of course, you cannot have one hand keeping track of the hat and the other hand pushing.
Gloves/mittens need to have non-slip palms and fingers, and ideally either are waterproof or will dry quickly if they do get wet. I have separate pairs that I keep with my chair that are rugged and dry quickly, and fancier dress gloves that I wear for driving the car or “occasions” when I can be pushed.
We could talk about the issues with crutches separately, but most of the same information applies. Two things I want to mention in case you are just using crutches:
- I could wear long skirts that weren’t too floaty when I used crutches most of the time, but the “swirly” (3/4 circle or more) style I prefer was too easily caught up in the sticks and could trip me. That was true even with mid-calf or knee-length skirts.
- And you want to consider how easily the fabric on tops will “pill.” Polyester knits, flannels, and some wools don’t like being rubbed with the bar on a standard crutch and will either wear out or just look unsightly with little strings and pills hanging down.
This is probably more than you ever wanted to know, and yet if you are like me, less than you need to know. Feel free to leave comments with your tips and tricks for surviving allergies, health concerns, and mobility issues in a world that rarely thinks inclusively.