No Sitting, Minimal Bending, Mostly Bed Rest: How I Coped

Last year I had surgery that resulted in unfortunately placed stitches; in order to avoid tearing them, I couldn’t sit or bend at the waist (and for the first two weeks, I couldn’t shower and had to minimize standing and walking). The initial time frame for my recovery was four to six weeks, but for reasons that are not well understood (but are likely related to my autoimmune disorder and years of being sick), my healing was very slow, and I ended up being mostly on bed rest for three months, with another two months of transition time before I was ready to go back to living alone.

Many people in my life were horrified by my plight and said they could never do what I was doing. Months of bed rest certainly wasn’t my first (or second or nine hundredth) choice, but it wasn’t as awful for me as others assumed it would be for them. I wasn’t going from perfectly healthy to totally laid up, as some imagined for themselves; what led to my bed rest was a complication from an earlier surgery that restored my health after years of being very sick. Even on bed rest, I felt better than I’d felt most of the time during the previous several years.

Of course, bed rest was still not easy, and most of what I found on the web about how to cope focused on pregnancy, which is a very different situation. With help from nurses, a physical therapist, an occupational therapist, and my partner, I figured out a lot of details about how to manage. Here I share some of what I learned. The first part focuses on physical issues, including getting in and out of bed, bathing, and using the bathroom. The second part focuses on what I did all day and how I kept myself reasonably content.

Note: Unless the text indicates otherwise, links to products are to show pictures of them, not to endorse specific brands.

 

I. The Physical

Getting Help.  My surgeons did a great job of putting my parts in the right places and sewing me up, but their advice on how to cope with weeks without sitting or bending was along the lines of “You’re smart, you’ll figure it out,” and “It’s tough.” However, just because I’m good at math doesn’t mean that I had any clue about how to get out of bed without bending at the waist. I asked for more help.

A physical therapist and an occupational therapist visited me in the hospital after surgery and made managing the bed rest universe seem plausible. The OT gave me a “hip kit” (most often used by people who’ve had hip replacement surgery) with tools for bend-free living: a grabber to pick up things, a “lollipop” sponge on a stick for bathing, elastic shoe laces and a long shoehorn so I could put on my shoes myself, and a device to help me put on my socks. We went over the basics of dressing, bathing, and using the bathroom. The PT taught me how to get in and out of bed and how to roll over, and we discussed issues like preventing back problems. I had one of those awesome super nurses in the hospital, who gave me tips on hygiene and a variety of other things. My partner sat in on many conversations and demonstrations and helped me remember details, as I was tired and drugged.

My surgery was scheduled very quickly, but if you’re facing bed rest and you have more time, I recommend seeing a PT and/or OT before surgery, as well as after. It would have been helpful to know more of what I was getting into and to practice before I was jacked up on pain meds (although practicing once the physical limitations are in place is critical too). It’s essential to get a hip kit and to have someone help you learn to use it, and to get feedback on how to move correctly, given your limitations. You don’t want to tear your stitches or otherwise set yourself back while you’re learning.

I stayed at my partner’s house for five months after surgery. If she had not been willing to care for me, I would have had to go to a rehab facility, as I required too much care to patch together with friends, and the rest of my family is out of town. At the beginning, I also had a visiting nurse come several times a week. You cannot do weeks of bed rest alone; you need to find people who will help, and you need to accept their help.

It’s important to figure out in advance how you will communicate with your medical team. I got contact information from the PT and OT, so I could call or my partner could email with questions. Make sure the medical folks know where you’re staying – even though my partner’s contact information was clearly listed on my discharge papers, people from my surgeon’s office looked up my records in the computer and tried to contact me at home, and I missed important messages (using a cell phone for your number is probably best).

My partner’s phones have an intercom where one extension can call other extensions. When my mobility was very limited, it was nice to be able to pick up the phone to ask for something rather than having to shout from bed so others could hear me from downstairs.

Lying Down, Getting Up, and Being in Bed. Getting in and out of bed without bending much is actually easier than I originally anticipated. It’s better to have someone show you in person, but here’s a description: The way I came to think of it is that you use gravity both to get in and to get out of bed. To get out of bed, lie on your side facing the outside of the bed, and imagine (but don’t try!) rolling right off the bed onto the floor, keeping your whole body parallel to the bed. Now put your top hand on the bed, and keep your body straight as if you were rolling to the floor, but instead of falling on the floor, twist toward the vertical, so your feet go to the floor, one at a time, and your head goes up, propelled by gravity from the twisting, the rolling motion off the bed, and a bit of pushing with your arms.

Getting into bed is basically the reverse. Stand so your feet are parallel to the bed, facing the direction you want your head to land. Put the hand closest to the bed on the bed if you can reach, hover over if you can’t, and then do the roll and twist motion, using gravity as your top half goes down to pull up your closest leg, with your second leg following. You will end up on your side, facing out.

I found it much easier to get on and off a higher bed, where my hand could reach or almost reach the surface, than the couch or a lower bed, where getting in felt like falling and getting out required extra pushing. The surgeon said I was likely to tear the outer layer of my stitches, but I managed to keep them intact for ten days, until I ripped some during a bad dismount from the couch. I stopped using the couch for many weeks.

For the first two weeks after surgery, I was not allowed to lie on my back, and I wasn’t supposed to stand up too much. I was allowed to lie on my stomach, but I don’t like that, so I was on my sides almost all day. Pretty soon my hips started to hurt a lot. The visiting nurse suggested egg crate foam to put under the sheet, and that solved the problem.

At the beginning, I used pillows to prop me up on my sides, and rolling over was a challenge (this is another good thing to go over in the hospital). I mostly used my hands and feet. I was allowed to bend my knees for this maneuver, and I did a kind of low yoga bridge pose – using my hands to push myself toward my back, then lifting up onto my feet, and turning. It was painful to turn at first, and I was guided by trying to minimize the pain. It’s also a good idea to suck in your abdominal muscles a bit when turning to protect your back, something I learned later from a PT.

When the weather got colder, I had trouble sleeping because my feet were too cold — this issue is unrelated to my surgery, but with limited mobility, it was hard to get extra socks or blankets to warm my feet. Instead, we put a heating pad near my feet, with the controls where I could reach them. The pad had an automatic shutoff so I didn’t have to worry about falling asleep and leaving it on too long.

At one point I got a sweat rash on my trunk and legs from being in bed so much. It was ugly, but only mildly painful. By the time the nurse at my surgeon’s office saw it, it was too late to prescribe anything, but there are creams available that can help. Another time I got a big pimple on my butt, and I worried that it was a boil – months earlier, as a complication of my disease, I’d had many boils, including one in that exact place. Fortunately this time my skin was just irritated from being in bed so much, and clintamyacin took care of it.

After several weeks, I was able to lie down on my back in bed, and with appropriately placed pillows, I could type on a laptop computer in bed. I got this laptop stand near the end of my bed rest; it would have been helpful earlier (it’s a bit tricky to get the right settings; I use 150, 30, 165 for bed and -30, -30, -30 for the recliner).  I didn’t try it, but I probably would have been able to use an ipad or other tablet computer earlier in the process.

Toilet.  Not being able to sit or bend makes going to the bathroom complicated. I found the pstyle enormously helpful; it is one of several inexpensive devices that enable women to urinate standing up (mostly they are advertised for camping and other outdoor uses – the medical market seems largely untapped; none of my nurses or doctors had seen them before). I kept mine in the cloth case (which I recommend getting) on the back of the toilet for easy access.

At the hospital nurse’s suggestion, I used wet wipes after urinating for sanitation and infection prevention, especially before I was allowed to shower. Using the wipes helped me feel a lot cleaner.

Dealing with my (often very heavy) period while standing up was not fun; these were some of the worst days of the bed rest. More than once I got a bodily fluid where I didn’t want it and had to change clothes or wash a towel or rug (I picked the rug off the floor with the grabber then washed it out in the sink, lowered it back to the floor with the grabber, and then rearranged with my feet). I also could use the grabber and a wet paper towel to wipe up (small) messes.

I have an ostomy, and I’m not sure what people with original plumbing do to poop; probably you’d need some sort of bed pan (definitely something to talk about with a nurse, PT, or OT). I used a male urinal from the hospital, which is kind of like a plastic milk jug with a bigger opening (the nurse gave me two, one for each bathroom). The first time I emptied into the jug, I started to gag, and then I willed myself to stop – being disgusted every time I emptied was just not something I could afford. I found it easier to empty if I left a little water in the jug for the next time. I emptied my bag in the jug, and the jug in the toilet. Then I rinsed out the jug twice (into the toilet) and put some more water in. I kept the jug on the side of the sink so I could reach it.

It was funny reminding people in our all-female household to remember to leave the toilet seat UP for me. If someone forgot, I used the grabber to lift it up.

Dressing/Grooming.  We set up a card table and put my clothes on it, so I didn’t have to bend to reach any drawers. Putting on or taking off clothes above the waist didn’t require anything special, but for the rest of getting dressed or undressed, the grabber became an extension of my hand. It was not hard to put on or take off loose pants (the only kinds I wanted to wear in bed) once I got the hang of it, and this was one of the last tasks I was able to resume tool-free, so I used the grabber for many months.

The sock pull was my favorite tool. It’s a curved piece of plastic with a bit of foam on it, attached to two ropes. You put the sock over the plastic, then hold the ropes and put your foot through – the foam keeps the sock from slipping too early – and then you pull up the ropes until the sock is on your foot and off the pull. The tool did stretch out my socks a bit, but not too badly.

Before surgery, I bought slippers and shoes that I could step into, with no laces to tie or velcro to attach, and with hard soles for stability. After I wore them for a while, they started stretching, and at some point the shoes felt unsafe. Then I started wearing my sneakers for my daily walk outside. I used the elastic shoe laces and the long shoe horn to get into them. The tricky part was holding the tongue of the shoe back with the grabber in order to get my foot in – I had to set everything up and then gently lower the shoe to the floor with the grabber. If I dropped the shoe (as I often did), the tongue would usually slip. It was hard to keep the tongue from curling under when I put my foot in. If someone else was home, I often asked for an adjustment; if not, I tugged a bit with the grabber, started over, or just went on my way with my shoe not quite on correctly (later on I could bend my knee and reach behind my back to adjust with my hand).

Cutting my toenails was one grooming task that I was not able to do on my own. Not being able to bend or sit left me somewhat out of touch with my toes, and my nails got too long, but my partner graciously cut them for me.

I keep my hair short, but after several months it started bothering me. After I was more mobile, but still not able to sit, the woman who cuts my hair agreed to cut it standing up. She’s almost a foot shorter than me, so she had to stand on a stool, and it wasn’t the best haircut ever, but I appreciated her willingness to give it a go, and I felt much better afterward.

Bathing.  After two weeks, I was allowed to take showers, which were amazingly wonderful. Before then I had to take sponge baths. For both showers and sponge baths, I used the “lollipop” sponge to help reach my legs; with sponge baths, I needed the lollipop stick to reach the water coming out of the faucet. I was able to step into the tub (which was pushing it a bit at first, but the PT said it was OK once in a while) and take the sponge baths there. I found liquid soap better because when I dropped the bottle I could pick it up with the grabber; trying to pick up a wet bar of soap was quite frustrating. I used hibiclens (what surgeons use to wash before surgery; generic name is chlorhexidine gluconate) to clean the area near the wound.

Before I could take showers, I washed my hair in the kitchen sink, which was also pushing it a bit on the bending. I only washed it every few days, but it felt great to have clean hair. It often seemed like a hassle to take a sponge bath – getting dressed and undressed was a lot of work –but I felt so much better afterward, so I pushed myself to wash every day even if I didn’t think I felt like it.

Eating. I mostly ate lying on my side. Before I tore my stitches getting off the couch, I sometimes ate at an end table pushed up near the couch and sometimes on a tray in bed. After I tore the stitches, I ate in bed.

It was a lot easier to have someone else bring me a tray when I was already lying down than to maneuver myself and the food into bed without spilling anything. However, I generally was by myself during the day, so I avoided things like soups that were easy to spill (sometimes I ate them standing up at a kitchen counter that was a good height). I often moved the tray to the floor when I was done, and someone else picked it up later, but after a while I learned to move the pillows and place the tray at the top of the bed and then do the no bend bed dismount without toppling the tray (if I left it on the floor, I couldn’t reach it once I was standing, and it was a bad shape for picking up with a grabber).

Sometimes my partner and/or her daughter would eat in the bedroom with me and keep me company. Sometimes I would say that I was “cooking” today and call and order take out; we’d have a “picnic” in the bedroom.

I ate a lot of frozen microwavable meals. I was able to access most things in the refrigerator and freezer with my grabber, but my partner tried to leave things I was likely to eat on the shelves that were easiest for me to reach.

Anyone recovering from surgery needs a lot of extra protein, and I tried to be mindful of this, but I also ate way too many carb oriented snack foods. Eating was one of my main pleasures during the bed rest – I was only a few months away from years of food restrictions, and was conscious of how many foods I could now enjoy. Even though a lot of my calories were going toward wound healing, I still gained ten pounds.

Transportation. I had to get home from the hospital after surgery, and then I had follow-up appointments with my surgeon every two weeks. My partner and the PT and OT worked out the best way to get me in the car after surgery; I wasn’t really part of that conversation.

The car is relatively small – a Ford Focus – and it would have been too hard for me to get into the back seat, so we put the front passenger seat down as low as it could go. Then we put a large, thin floor pillow over the seat, to make a relatively flat surface. I tried to do the no bend way of getting in and out of the car, but it was difficult – getting out felt like playing Limbo (which I wasn’t even good at as a child), getting in was like getting into bed with obstacles above and below. My partner sometimes cringed watching me, but luckily I didn’t seem to do any damage to the wound while getting in and out of the car. Once I was in the car, I would lie on my side, facing the driver, with more pillows in front of and behind me. It wasn’t much of a view, but I was able to stay pretty stable.

When I was a bit more mobile, I sometimes took the bus or the subway and stood the whole time. Standing was tiring (I’d been on mostly bed rest for a long time and was out of shape), but it was easier to protect my wound standing up than getting in and out of a car. I avoided rush hour crowds.

Some Anecdotes.  It was interesting how hard it was for people to integrate that I couldn’t sit. The terrific nurse I had in the hospital helped me think through how to go to the bathroom standing up, but then ordered a wheelchair to take me to the car for my discharge. We got to my first follow-up appointment very early, and I asked the receptionist if there was a room I could lie down in, since I couldn’t sit and it was a long time to stand; she said she’d go check, and then told me, “Please have a seat.”

I had two grabbers. I usually kept the one from the hospital upstairs and the one we bought at Walgreen’s downstairs, but one time my partner’s daughter and I tried to play grabber catch with a light crocheted ball. It was surprisingly challenging and kept us amused for a while. We enjoyed making up events for the “Grabber Olympics,” such as grabber hockey and grabber bowling

One time, right after I locked the door going outside for my daily walk, I dropped the house keys on the porch. The grabbers were inside. I had a cell phone with me (I always carried one when I went out), but it was not a good day for my partner to leave work and come rescue me. There was no one on the street to ask to pick up the keys for me, and I was thinking about ringing doorbells, when it occurred to me that if I walked down the porch steps, I could reach the keys from below without bending.

About a month or so after surgery I started doing a little shopping in the neighborhood. I bought items that totaled less than five pounds and that weren’t displayed on the bottom shelves (usually I bought lemon ice – a habit I acquired during my many hospitalizations — and pretzels). One day I went to get a takeout sandwich; this was a milestone kind of outing, as the restaurant was outside the radius I’d usually been travelling in. As I got my change, I dropped a dollar bill on the floor, and I stood, frozen, looking the floor, wondering what to do. After a few long seconds, the woman behind me picked up the bill and handed it to me. I said I was recovering from surgery and couldn’t bend, and she said she figured it must be something like that. I joked that it wasn’t worth a dollar to me to bend down and risk my recovery, and she laughed and wished me well. It ended up being a nice interaction with a stranger.

Afterward.  For much of my recovery, I imagined that one day I’d get permission to sit and bend and go along my merry way, but my recovery has been gradual and incremental (and is not yet done as of this writing) – first a bit of bending in bed, then a bit of bending standing up, then a bit more bending, then a bit of sitting in a reclining chair, then sitting in a straight backed chair with a pillow for a few minutes, then for a few more minutes, etc. Most of the time, pain and discomfort have guided me on to how to move.

As I started being able to move more without hurting the wound, I became more conscious of how deconditioned my body had become from the best rest itself. I was surprised at how much my legs hurt: except for the first two weeks, I’d been walking every day, but walking for a half hour or forty-five minutes and spending most of the rest of the day lying down is not equivalent to a day with a wider range of motion.

A big annual math conference was in Boston three and a half months after my surgery, and my surgeon said I could go. I was not able to go to the whole event, due to fatigue, and on the way home from the first day, going down the stairs to the subway, I pulled my calf muscle bad enough that I was limping for a week (and then after being OK for a few more days, I pulled it again). My legs often felt numb. I started getting massages, and the massage therapist described my legs as “like tree trunks,” and although the massages helped the rest of my body, they didn’t seem to loosen my legs much.

I wish I had gone to physical therapy as soon as I was able to get there. I thought I would be better sooner than I was, and maybe a month after I was out and about, I decided I was improving too slowly and called for an appointment, which took a month to get. Right before that appointment, I moved back home, and a few days after the move, I threw my back out bending to unplug something; thus at the appointment, we focused mostly on my back (the PT gave me some abdominal exercises that might have helped me during the bed rest too). She tested my body for strength and range of motion, and there weren’t any glaring issues; I just had general weakness and deconditioning. Shortly after the appointment, I got permission to swim (even though I wasn’t fully healed) — I hadn’t been able to swim for over a year, and was overjoyed that I could go again. Swimming ended up making further PT unnecessary; I only went to one more appointment.

 

II. Keeping Busy and Staying Sane

Since other people don’t necessarily like to do the same things that I like to do, in this section I’ve classified my activities and practices by the purposes they served. If you’re facing bed rest, perhaps some of these categories will spark ideas, even if the details wouldn’t work for you.

Rest.  Bed rest wasn’t as bad for me as it might have been partly because I really needed the rest. I’d been pushing through my illness for years, and even though it had been seven months since my first surgery, which relieved most of my symptoms, I had not recovered from the years of being sick and exhausted much of the time. When I got frustrated with bed rest, I tried to remember the big picture: I wasn’t just healing from a small surgery; I was also healing from years of being sick.

Besides sleeping, other things that were restful for me were watching videos, listening to music, and later on, reading lighter fiction and doing puzzles.

Online Support.  My partner and her daughter were awesome, and a few friends and family members kept in touch by phone or visited, but I also got a lot of support online. Once I was able to type in bed again, I kept up my Carepage blog where I shared experiences with people in my life and got messages from them. I also frequented an online forum for people with ostomies, where several other folks followed my progress and cheered me on.

Helping Others.  I got a lot of satisfaction out of answering other people’s questions on the ostomy list, particularly those of people who were new and/or young. Issues ranged from how to keep the ostomy bag from leaking, to whether to have surgery, to how to cope with missing out on things. I couldn’t cut my own toenails and needed tools in order to get dressed, but on a daily basis, I stayed in touch with the fact that I was a person who had things to offer to others and who was generous with my time and knowledge.

When I was able to start doing little things around the house, like washing dishes, it was good for my spirits. It’s nice to have someone else do the dishes for you when you could do them yourself, but not so nice to need someone else to do them because you can’t. Sometimes I helped my partner’s daughter with her math homework.

Learning New Skills. One of my main activities was crochet, which worked well logistically, as I could do it on my side in bed. I’d started crocheting a few years earlier in order to make math models for my classes, but on bed rest I learned to make amigurumi — small stuffed animals and other things. J. Alfred Prufrock measured his days in coffee spoons; mine were measured in toy dinosaurs, owls, octopuses, and snails. I’d never made any of these things before, and it was satisfying to assemble a menagerie (but it is important to keep the polyester fiberfill off the bed – it’s irritating). Here is a site with great patterns, and a good book, and another good book.

 

I watched videotaped college courses on topics like music theory that I knew little about (sometimes while crocheting). Being in bed was not putting my life on hold; I could still learn and grow.

Giving Gifts.  I gave away the stuffed toys I made to children in my life. Some visited me; most got theirs in the mail after I was up and about. It was a lot fun to see kids name and play with the creations I knew back when they were balls of yarn and bags of stuffing material.

I also finished a “permutation blanket” that I’d started after an earlier hospitalization (each of the 24 squares shows one of the possible permutations of the four colors of yarn). This was a gift for my partner and her daughter.

 

Staying Connected to the Larger World.  The Occupy movement started within days of my surgery, and in order to follow it I joined twitter. I soon started following some other math teachers and sometimes joining the twice weekly “math chats,” where people discussed a variety of topics in 140 character bursts, all at the same time (it felt like having an academic conference in a noisy subway station, but it was fun to chat with teachers from all over the world – I learned, for example, that “noughts and crosses” is British for tic tac toe). Twitter is something that can take up as much time as you want it to (up to 24 hours a day, easily!) – a feature while I was on bed rest, not so much in regular life. I found links to many interesting blogs and articles that I probably wouldn’t have found otherwise.

Ideas for the Future. I kept a notebook by my bed, where I recorded ideas for teaching, often inspired by things I read online. I also played with ideas for a book I want to write and for articles (including one about math and crochet!). I am a reflective person, who generally does not get enough time to reflect, so there were aspects of the bed rest that were almost a positive for me. Bed rest was probably a lot easier for me than it would be for people who are more social and less of a homebody than I am. If you’re like that, you probably need a very different strategy for coping (perhaps involving more visitors, skype, etc.)

Advocacy. I mentioned earlier a communication mix up with my surgeon’s office, where I didn’t get a prescription that I should have. There were no adverse consequences for me, but someone else could have died without the drug. I had an initially uncomfortable, but ultimately connecting and productive conversation with my surgeon, and then I called the patient advocacy office at the hospital to report the issue and possibly help improve things for the future. Although I was very upset about the incident, ultimately it was satisfying to be able to do a little activism to help improve the hospital.

Perspective and Seeing the Good. I hate it when sick people are pressured to have a positive attitude all the time; so often that’s to keep other people from having to deal with our suffering. That said, I felt I had some choice about how miserable I was or was not, and most of the time I tried to make things better for myself rather than worse. I kept front and center how well I was doing compared to a year earlier, and I also kept in mind friends and family members with cancer and MS, some of whom had died – just to be clear that I wasn’t the only one who had a serious illness. I remembered the temporary nature of my situation and was aware of how much mobility I did have and how other people invented the tools that made it so much easier for me to function with my restrictions. Even when I was at my most frustrated, angry, or sad, I knew that what was happening to me was not the worst thing in the world and that there was a lot I had to be grateful for.

I continued practices I learned in a stress management program I’d taken a year earlier. At the end of each day I wrote down five things I appreciated, as well as the best, worst and an ordinary thing from the day. I kept in touch with that the food tasted good sometimes, the sun shined on my arms, people helped me, I enjoyed crocheting, looking at flowers, talking to friends, learning new things, etc. I knew I had excellent medical care, and I wasn’t going to lose my job while I was recovering. The idea wasn’t to sugar coat the bad parts, but to make sure that I kept seeing the good parts too. Looking back at my daily logs of the “worst” thing each day, I could see that I was healing. One time for ten days in a row the worst part of the day had to do with pain in the wound, and then the next day the worst thing was something offensive that someone said online – the online words were upsetting, but  this was progress!

No Whining.  Although I sometimes slipped, I decided that whining and feeling sorry for myself were unacceptable. It was enough that my partner was cooking for me, doing my laundry, and checking my wound every day; she shouldn’t have to deal with me complaining all day or moaning, “Why me” or “It’s not fair” I thought, “Why me? Well, why anyone? Am I so special that I should always have good luck and not get sick or have complications?” “It’s not fair,” is true, but not at all helpful.

Joy. Someone gave me an amaryllis plant; I put it where I could see it from my bed. Watching the leaves grow and the flowers bloom gave me great joy. Music, walks, visits, math, and food also kept me in touch with how good it was to be alive, despite my limitations.

Please feel free to share additional coping strategies, to ask questions, or to leave other comments.