Most people spend much of their lives living within societal structure. By this, I mean that most people went to school as children, had scheduled work hours as an adult, and otherwise had discrete blocks of time set aside for specific activities. One of the social problems with a disabling condition is that those of us with disabilities are suddenly knocked out of most, if not all of these structures due to our conditions. With chronic conditions, it is often a very gradual process and often precipitated by something reaching a crisis level(in my case, I kept trying to work despite urinary issues, but once my whole body started shaking uncontrollably, I was forced out of participating in work). For people who experience sudden and severe injuries(like a fall or car accident or stroke or an aneurysm), one day they are living life in all their usual patterns, and the next, they are in a hospital after a life-changing event. Either way, there is an abrupt change, and most of your life responsibilities shift or vanish. When things first go wrong, you do often need that healing time, sleep, and similar separations from life. But falling back into those day-to-day life patterns has been disrupted and often the changes that have occurred for you either exclude the possibility of going back to business as usual, or you will need a huge change in both your thoughts expectations and actions – and your employer or school may need to make similar adjustments. In many cases, these disruptions in patterns leave you suddenly needing to create your own structure and patterns, because the ones you were used to are no longer an option. I’m going to walk you through what I have done with my life to create a helpful and constructive set of patterns which help me to live my best possible life.
Have a healthy morning routine
I aim to start my mornings around 6 AM, when my Fabulous app brings up my morning routine. I do value a good night’s sleep more than when I wake up, so I do not set an alarm in the morning.
My first move after waking up is to activate my app, drink some water(ideally, I have a glass of water beside my bed before I fall asleep to make this easier,but I don’t always remember/have the spoons), and hit the bathroom. I’ve learned that my bladder is often crankiest in the morning, and takes a while to settle down, especially if my day to day stress is high. I make sure I drink something first because water is so essential, and most people are perpetually in a state of mild dehydration. I know that I don’t generally drink enough water, especially with so many years of urinary issues. While I’m in the bathroom, I brush my hair and teeth, then I go out to my front porch to meditate. Now that Al and I have the apartment to ourselves, I have finally managed to set up our front porch as a hangout and relaxation space. I have a glider seat on one side looking out to the street, and set up the futon mattress on the other side as a meditation space for me and potentially space for friends to crash if we have company.
Meditating as a form of self-care
I have mainly been using another app, Calm, to help me meditate. They have a different guided meditation each day, and a collection of additional meditations and meditation lessons. It keeps track of its use(how many minutes/hours total, what days it’s used and for how many days in a row), and ends each session congratulating you for completing the session and displaying a lovely image and quote related to the theme of that day’s meditation. I often share that image out on Facebook to give my friends something pretty and inspiring to look at, and to celebrate my success in meditating another day! I know meditation sounds a little hokey, but it is not a religious action(though many religions use meditation as a tool), and it is a process that has been scientifically proven to help break habits, improve self-control, help practitioners become more patient, and help manage a variety of health issues. Meditation, especially mindful meditation, is a great tool to help you manage your thoughts about your condition(and your condition itself if it is mental-health or pain related), and help you find a sense of calm that can help you better handle the stresses in your life. I encourage you to do some exploration into meditation and mindfulness techniques and find something that might work for you. There are also meditations specifically designed to help you fall and stay asleep, so if you are having issues getting to sleep, exploring sleep and relaxation meditations may be a useful practice for you at night.
When I wake up closer to 6, the sun is just coming up, birds are singing, and it’s quiet and (relatively) cool out. I have found that the act of meditating often brings out my movement symptoms, which is why I meditate lying down on a mattress. I will sometimes have full body spasms, and often have my arms, legs, or wrists slam or shake during the meditation process. The best way I can explain this is that I am consciously releasing control over my body, and in my case that often means that symptoms I wasn’t aware I was holding back are released. I don’t expect myself to remain still during meditation, and instead, I focus on my breathing and on accepting whatever movements I have. Instead of getting annoyed that my legs are kicking, or I’m rolling around on the mattress, I try to accept that my movements are happening and that they need to happen at that moment. It basically gives me an extra sensory input that I can be aware of and try to accept, and another thing to be patient with myself about. I have found myself doing a lot of meditations around accepting and expressing emotions. The idea is that internalized anger is one of the major emotions behind my movements. I am working on expressing it verbally and physically in manageable ways too, but I have found that taking those 10-15 minutes to meditate shortly after I get up usually leads to me feeling better and more in control, and I have found that I’m often less apt to have my movement symptoms. I much prefer letting my movements out in the early morning with meditation to spending my day focusing on controlling them or having them come out with a vengeance when I try to go to sleep(at one point I spent months with full body spasms for 5-15 minutes every evening after I got home from work). I work mostly with mindfulness techniques to help myself with this process.
Have healthy eating and taking your medication built into your routine
After meditating, I have breakfast and take my medication. This time of year, I’m mostly eating greek yogurt with fruit and granola(I haven’t been up to making my own granola for a while, so it’s the healthiest store-bought I can find, and usually the sugar/sweetener in it is enough to sweeten up the fruit and yogurt that extra bit I need). I am down to just birth control and antidepressants when it comes to prescribed medication, but I learned earlier this year that I am mildly allergic to cats and dust(apparently either one of them has fur full of allergens, or the two of them together are slightly too much for my system…I had Slim(my previous cat) for 10 years with no allergic reaction!), so I’m taking a daily dose of allergy meds, and I have made it a habit to take a multivitamin and am now taking some additional supplements too. I am taking extra calcium(generally a good idea for women to prevent osteoporosis, and since Al already has osteoporosis, he’s taking it too), magnesium(some people have found magnesium helpful in treating muscular tightness issues, and mine tend to be tight, and sometimes are randomly painful, so I am taking a preventative/maintenance dose), vitamin B2(niacin) to treat my headaches – my neurologist suggested it, and I have had substantially fewer headaches since I started taking it, and a B-complex supplement, which has most of the B vitamins inside. It’s part of my B2 dosage(only need one B2 pill instead of two), and helps me make sure that I have all the B-vitamins I need. I also have a prescription for sumatriptan that I take when I feel a migraine coming on. I’m still trying to figure out how much it helps, as migraines are relatively new to me, at least as a common symptom.
It is really important to take your prescribed medications regularly and as prescribed. Currently, all my medications can be taken in the morning, so I pack them in a weekly medication holder and just take them all as part of my morning routine. If you are taking pain medication or other medication that needs multiple doses per day, please do your best to take them on schedule- you can set timers for yourself, or create habit/tasks with a program like the Fabulous or simply a habit-builder app. Some medications need to be taken with food, and others need to be taken prior to eating, or on an empty stomach – or a few hours after eating. Be sure to read the labels and do your best to follow them. Generally, vitamins are most likely to be absorbed when taken with food, which is why I time things the way I do- I usually take my medications after I’ve started eating and have my last couple of bites of breakfast after I swallow all my pills, so I have a good taste in my mouth. Due to how Al’s schedule works(and how hard he finds getting moving in the morning) he takes his medication mostly in the evening, often around when I go to bed.
Plan some time for exercise
I usually go from that wake-up-and-get-energized routine directly into my exercise routine(unless I need to go to an appointment relatively early in the morning). I go for a walk down the Henry Hudson trail most mornings, and I’m pretty proud of myself because my walk is now close to 3 miles in length! I’ve worked my way up to that and might extend my distance a bit in the near future. It is a beautiful walk, alternating between forest and marshland, and again, the earlier I go, the better rewarded I am by the world around me. The birds are out early, and I often see robins, blue jays, and snowy egrets on my walk, and there’s a great blue heron that I see about weekly. This time of year the red wing blackbirds are out in droves, and I catch the occasional mourning dove flying by. The squirrels are usually active, and I take time on my walk to also notice the flowers and berries growing along the way. Earlier in the season, I found a broken robin’s egg or two, and there are often mallard ducks and Canada geese further down the trail. I have watched the goslings grow into their current awkward and not-yet-feathery stage, and look forward to watching the families grow up until the young are indistinguishable from their parents. I take my time on the trail to observe nature around me, and often let myself think through my posts or plan my next steps in solving whatever else I am dealing with. I do try to stay present and mindful during my walk, saying hi to the people I pass(there’s almost always somebody else walking by), and noticing the slow changing of the seasons, and the changing of the tide(I cross two bridges on my walk). For many people with physical disabilities, going for a walk may be too much or simply not an option. If you have any way of getting some time outside in nature, it can often be especially helpful, and if you are dealing with severe physical impairments, there are still often things you can do, such as physical therapy exercises to help your healing, or exercises focused on parts of your body that are either not damaged or less injured. For others who struggle with mental health concerns, especially depression, the idea of doing any of this probably sounds overwhelming. Just pick something and do it – it doesn’t need to be far or long, just do some form of exercise to help yourself – walk around the block, or do a bunch of jumping jacks – anything to get your heart pumping and some endorphins moving!
I am currently going through a period where I get really hot and sweaty super easily, so I’m usually dripping and needing a shower pretty badly when I get home. I roll my legs with the stick(to help break up any muscle cramps or tightness that may be developing), then take my shower and really get into action on my main objectives – usually a combination of work on this blog, research into Al’s condition, and going to doctor’s appointments(sometimes Al’s, sometimes mine).
Create a to-do list
I have created a routine for myself which includes making the bed, tidying up around the house a little(which often translates into clearing out the space I intend to work in), and updating my to-do list. I am sure you have heard people talking about to-do lists – living with a disability it is especially useful to keep track of what needs to be done! Many of us have pain issues that mean we need to plan carefully so we don’t run out of spoons, or fatigue and memory issues that make planning ahead and writing the plan down especially important. I have a paper to-do list that I write weekly and check daily, with things like next steps with doctors or life maintenance work(paying bills, checking on service disruptions, making appointments, meal planning, a separate grocery list, and preparing for big events), and I make rituals(the preferred term on the Fabulous) for myself around any regular responsibility(physical therapy exercises, gratitude journaling, and so on). I also have an app set up with specific tasks for myself to do to improve my blog and other business projects I am working on. Once I have checked in and made sure I know my plan and responsibilities for the day, I settle down to work for at least one straight hour. I have learned that I usually maintain focus for close to two to three hours, so I have a timer set for 50 minutes, but keep going until I get distracted – the timer is my minimum focus time. After getting some focused work done, I give myself short breaks to either rest and relax(if I’m having a rough day), do social but work-ish things(like go onto facebook and check in with the different groups I have joined), and then, depending on time and energy, I’ll either do another round of work, or have lunch.
I don’t have a strong routine around lunch, since my sleep schedule varies(if I have breakfast when I wake up around 11, I’m not really hungry around noon, but if I’m up and out at 6 AM, I might need to eat around 11 or so), but I tend to aim for low-effort meals. I have found some healthy microwavable sides(whole wheat pasta with vegetables, quinoa and butternut squash dishes, things like that) that make a great lunch, or I’ll do a bagged salad(I haven’t had the energy to make salads lately, but I’m hoping that will shift), or if we made enough food, I’ll have leftovers from dinner. If it feels right, I also might make a healthy smoothie for myself, especially if I get hungry before noon, or if I get moving around the same time as Al. I tend to listen to my body and follow my instincts on just what to eat. I do my best to minimize the available junk food and to keep relatively healthy food stocked in the fridge so I’m less likely to be tempted to eat an unhealthy lunch. Al is trying to get more fiber and calcium in his diet, so buys healthier breakfast cereals(raisin bran and cheerios instead of lucky charms or cocoa puffs). He almost always has cereal for breakfast, though occasionally one or both of us will make eggs(I push to add a lot of vegetables to our eggs).
Make your schedule work by respecting others, and when possible, build in little pushes to get going
Al is not a morning person. He generally wakes up between around 9 and 11 or so(if he has to get moving earlier, he wakes up as late as he can afford to). He is also very slow to get moving in the morning, sometimes lying in bed on his phone for an hour or two before he can work up the motivation to get moving. He is dealing with constant pain from his hip fracture last year, and the pain flares when it’s wet or cold out, or if he pushed himself too hard the day before. I let him sleep in most of the time(if either of us has an early appointment, he sets an alarm and I encourage him to get moving with time checks), and go about my day until he is ready to really interact.
Because of his sleep habits, we feed our cats(pictured on left) in the late morning(9 AM at the earliest, usually closer to 10 or 11), and share that responsibility. I pick up their plates when I get going and put them in the sink(sometimes before, sometimes after my walk), and Al washes them when he gets out of bed. I fill their dishes with wet food, and then we each offer a plate to a cat and feed them as far apart as possible(to discourage food stealing or fighting). Nigel is a very vocal fellow who loves his food, so he reminds me to feed him repeatedly in the mornings(a reminder for Al that we have other lives dependent on us), and gets very excited when Al makes his way over to the sink, knowing breakfast is coming soon. Rorschach is much more even-tempered and doesn’t make noise very often. Nigel cries for his meal, and most times, I’m the one feeding him. Al generally gives Rorschach his meal and is consistently greeted with a single ‘mew’ as he sets the plate down. We use feeding the cats as a push for Al to get himself going in the morning. He knows the cats won’t get breakfast until he gets up and does his part. I get things started since bending down is still painful for him. We do want to make sure the cats know that both of us are feeding them, so he is quite happy to put down the plate for Rorschach, even though bending down hurts a bit. Al starts his morning routine after feeding the cats, then either has breakfast while watching a show(on days where he doesn’t have a morning obligation), or heads out the door. He just finished his bookkeeper training program which he was doing three days a week from 9:30-4, so we are still working on what his new routine will be, but on those days, he would be heading out the door at 9, right after feeding the cats.
Al and I try to schedule our doctors appointments in the late morning or in the afternoon. I don’t drive, so Al is taking me to most of my appointments(some I can get to by myself on public transportation), and I go with him to most of his(as his advocate, observer, and note-taker). If it’s one of those rare days where we don’t have anything scheduled in the afternoon, I often do more focused work on this project, and every other day I do the PT exercises my pelvic floor therapist gives me. I’ll sometimes watch something on TV those days, while having lunch and then doing my exercises. TV is a huge time suck and so I do my best not to build watching TV into my habits, as it often robs me of my motivation. When I do watch TV it’s usually either because I just don’t have the spoons to do anything else, or because I have a set of activities planned so it’s not a waste of time, and often I make sure I have a reason to get moving after an episode(two at the most). For example, on Tuesday, I worked on this post for several hours, then stopped to make my lunch, then watched TV while eating it and doing my exercises. I needed to walk out the door around 1:30 to make my 3:30 therapy appointment on time. The bus is scheduled to pick up at the end of my street around 1:45, and it’s about a 10-minute walk. Once I’m on it, I catch a connecting bus and end up at my therapist’s office close to 2:40 – since the buses run every hour, there isn’t a better option – and then I go in and wait for close to an hour to see her. I often bring coloring books to relax with or plan on doing some networking online from my phone during that time, so I don’t consider it wasted. Al picks me up afterward (my therapist’s office is on the way home from his class), and then usually we’d head home, possibly doing some shopping on our way.
Al tries to consolidate our time out, doing errand after errand until he needs to go home and rest(or we are done). He recognizes that it’s hard for him to build up that initial motivation to get moving, and the urge to just stay home is difficult for him to ignore. Much of the time, if we go out for an appointment, we do some additional running around afterward, whether it’s grocery shopping, getting food or litter for the cats, picking up medications, or any other responsibilities we may have.
Recognize your limitations, but push them when you can(did I mention eating healthy?)
Once we are home for the evening, Al and I usually make dinner together. There are days when I just feel exhausted and am not up to deciding what to eat or preparing it, and Al will cook for us. There are days where Al’s pain is especially bad, or he is especially tired, and I cook for us. If we both aren’t up to cooking, we have a stash of frozen pizzas and other meals that just need to go into either the microwave or the oven for a while, and then come out ready to eat. We also usually have one or two skillet meals for the same purpose. We aim to eat whole grains(brown, not white), vegetables(as much variety as Al will eat), and calcium(usually cheese or milk) in each meal. We do not buy white rice or regular pasta so that we aren’t tempted by too many empty carbs(occasionally something looks so good we just have to try it). We have a collection of frozen vegetables to mix in with any meal so adding in the veggies is minimal effort. Al is used to all meals having meat in the middle, but we are now mostly eating chicken, turkey, and fish instead of beef or pork.
I have been focused on healthy eating for the last several years after I hit a point where I recognized that I could not reliably exercise and wanted to lose weight. I figured if I couldn’t sweat it out, I’d need to control what went in. I did my research and shopped and planned meals with eating healthier in mind, but have recognized that I am not great at portion control or using willpower to fully avoid temptation. Since Al’s injury, we have learned that he has osteoporosis(so needs to ingest lots of calcium daily), pernicious anemia(so his body isn’t absorbing B12 no matter how much meat he eats), high triglycerides(so he needs to watch his fat and salt) and low HDL ‘good’ cholesterol(exercise and certain foods can encourage that number up a little). I have been helping him think through the adjustments he needs to make in his eating habits so he can be heart-healthy and get proper nutrition, but it is a process, not an instant fix. We’ve been working on it for about a year now, and I think we are doing pretty well on the food front.
We usually do end up watching something together over dinner(often various forms of news, which is stressful, but a good idea), and then if I feel I need to do more work, I’ll get back to my stuff, and he will either watch TV, play his video games(his primary stress relief/escapism), or sometimes work on stuff around the house, or on whatever his next step is.
We have fallen out of the habit of regularly exercising together(besides being important for health, it’s also an essential part of the treatment for his osteoporosis and HDL), mainly because he has had various work and activities that have been keeping him at the right level of activity, and I do get my own daily walks, so it’s not essential for me to go to the gym(though additional and different exercise would be better for me). Now that he is about done with his classes though, we are thinking through how and when we add exercising back into our week.
Get the best sleep you can
I often find myself feeling exhausted somewhere between 11 and 12, sometimes earlier. Al and I feed the cats after 9 PM – if we are out, that is whenever we get home, otherwise, we aim for something near 10. A quality night’s rest is very important for helping you to recharge and heal each night, so I do my best to respect my body’s signals and go to sleep at a reasonable time. Al’s internal clock is set much later than mine, so we often find ourselves going to sleep at different times, which is the main reason our days start at such different times.
Conclusion: I need structure in my life
A structure is a vital part of life. Protect yourself from falling into bad habits(like losing yourself in TV shows or video games for hours on end) by creating some personal health patterns that help you improve your life! Schedule yourself time for meal planning or house cleaning(if you are up to that), or to research your condition and treatment for it. Schedule time for yourself to exercise(even if that’s five minutes of PT), and schedule time to meditate. If you are newly disabled, there is a lot to process, if you have a chronic condition, you might have some emotions you haven’t let yourself connect with, and if you are working through mental health issues, retraining your brain to step back a little and recognize patterns may be one of your most powerful self-care tools. It’s also tempting to fall into bad food habits, like ordering out frequently or purchasing unhealthy but easy meals. You can fight that urge off by thinking ahead, meal planning, and carefully reading labels at the grocery store. If you don’t try to build healthy patterns in your life, you are likely to fall into unhealthy ones, so the more you can think through as you manage your condition, the better your quality of life can be!
What patterns in your life have you already adjusted? Which ones do you think might be most important to adjust next? Please share your successes and plans with me in the comments below – I’d love to hear them!