I’ve often been asked what a typical day looks like for me as a quadriplegic (quad). While every quad is different I can confidently generalize that with being paralyzed and fully dependent one has to spend a minimum of several hours a day dealing with general spinal cord injury care. I can only speak to my personal experience, but over the last 7 years I’ve had to widely adjust my expectations about how much I can get accomplished in a day.
Regardless if you suffer from a spinal cord injury or not, one has to manage their expectations on a daily basis. If you are a mother of four small children or a high-powered attorney who has a full docket of cases to review with a family at home, how you manage your time is essential.
I am the type of person who likes to be extremely productive and utilize every moment of every day in order to learn something new, enjoy life, trying to things, and get things done. I have a full-time job, which requires immense attention on a regular basis. This does prevent me from getting out and about as I would like during the weekdays. However, this is my choice and professional productivity is very important to me. The challenge with being paralyzed is that you have to devote so many hours a day to general survival for your healthcare.
I was calculating out the amount of hours I spend on essential spinal cord injury care each day, how much exercise I engage in, how many hours I need to work, and most importantly, how this all fits in with my constant chronic nerve pain that feels like pins and needles piercing my body every moment of every day. Needless-to-say this can be challenging.
It turns out that I need about 4 hours at minimum to complete my bowel and bladder care, shower, getting in and out of bed, and general caregiving activities each day. I then exercise for about 1.5 hours a day. These are the essentials I need just to survive on a daily basis. The particular challenge with respect to my situation is with the chronic nerve pain that plagues me on a daily basis because my productivity goes way down mid-afternoon. This means I need to get in bed early, relax, meditate, and try to re-direct my pain in order to sleep well to be productive the next day.
I generally get most of my busy work done in the morning, work quietly until mid-afternoon, and then get in bed early. Over the years I’ve pushed myself to the brink of exhaustion, pain breakouts, and complete misery with trying to get too much done in a day. I’m not including the periods in life where anxiety or depression can take over, which can further drastically reduce one’s productivity in a day due to emotional up’s and down’s.
What a typical able-bodied person gets done in a workday of approximately 8-10 hours I have to get complete in no more than 4 to 5 hours. It took me many years to adjust to the schedule, but I have finally learned to work very efficiently and block out outside distractions around me, which is quite a feat let me tell you. I appreciate that many folks in my situation are unable to work for a multitude of reasons, so I’m not quite sure how they pass their hours during the day, but each quad I know has to figure out how to manage the hours in their day in order to live a life that does not just include constant caregiving.
For the first several years after my accident I was unable to do much more than focus on my health care because I was always in some sort of medical crisis. It took a tremendously long time to get anything done because I was still trying to figure out the ins and outs of daily care with spinal cord injury. This was very disheartening because all I wanted to do was live my life, but spinal cord injury care kept getting in my way. I would take 3 steps forward and 4 steps backwards. For someone with my type of personality this drove me to the brink of insanity because I never thought I would get the hang of how to be paralyzed. It sounds like quite a funny thing to say, but as most quads can attest, this can take many years, but generally you do get the hang of it. Actually, being paralyzed is pretty easy from my perspective at this point when you’re not dealing with some kind of medical issue like a pressure sore, urinary tract infection, respiratory infection, etc. Although, to be fair we are usually dealing with one of these things at any given time 🙂 There are so many things we need to look out for on a daily basis — it is ridiculous.
Another immense challenge with managing expectations, emotional anxiety, and survival is caregiving. You always hope that your caregiver will show up to work, act professionally, not unload their emotional problems on you, and help you get through your day. However, in this department you literally never know.
Last month I actually developed a small stage 1 pressure sore where I developed a red spot just under my bum. I’m pretty sure it was from a wrinkle in my pants if you can believe that. A stage 1 pressure sore is small red mark that won’t turn white when you press it, this means the tissue has died at the surface layer, which can take between 1 to 3 weeks to heal.
Therefore, I had to adjust how long I was able to sit in my chair, how long I could go out for, and I had to get in bed earlier than normal. Many of you who know me know that I have supersensitive skin, have spent over a year in bed from pressure sores, and had multiple surgeries. My skin is my best friend and my nemesis all at the same time as I want to defeat whatever comes my way, but have to gently do so. I am always on the lookout for any foreign mark on my body. Just when you think you are done with dealing with one medical challenge another one pops up. So, I had to had to slightly alter my expectations with respect to living life. Thankfully it healed well, but this is just an example of how every day can be different.
A typical day look something like this for me:
6 AM: Wake up to do daily bowel program (yes, the wonderful world of having to poop every day and needing help to do it 🙂
8 AM: If everything goes according to plan I am up in my chair, dressed, and I my computer screens ready to work
9 AM-10:30 AM: Exercise regiment including: cardio, weights, standing, and bike
10:30 AM-12 PM: Continue to work or usually go to some sort of doctor’s appointment, rehab appointment, etc.
12 or 1 PM: Prepare lunch / wash hair 2x week + work
1 PM – 3:30 PM: Continue to work
3:30 PM – 5:30 PM: Start to get ready for either electrical stimulation to keep the muscle mass in my legs or a shower several times a week.
6:00 PM: Finally get snuggled up in my bed as the neuropathic pain by this time of the day is pretty overwhelming and I just need to late quiet, and still in my bed. The boyfriend usually comes over 3 to 4 nights a week around this time as well. Honestly, snuggling is the best medicine for pain 🙂
6:00 PM – 9:00 PM: Either lay very still in my bed from the pain, watch some TV shows, read a book, and definitely meditate. I usually have my dinner in bed as well.
9:15 PM: Lights out where my caregiver finally gets me ready for sleeping at night. I usually meditate some more, maybe make a phone call, but generally try to fall sleep as I have to get back up at 6 AM the morning.
A little video I made to show you where the magic happens 🙂
This is what a typical weekday looks like for me, but can always vary depending on appointments, spinal cord injury challenges, etc. As you can see there are so many hours dedicated to spinal cord injury care if I want to stay healthy. Sure, I could give up a lot of the exercise and make more hours in my day, but for my long-term health exercise is an absolute must in my world.
I used to fight getting in bed during the weekday so early, but for the sake of my mental health and pain levels I had to make that adjustment. Sometimes I do feel like a seven-year-old or younger because I think my three and six-year-old nieces physically get in to their bed later than I do. There are many times where I wish I could go out for a casual drink or a bite to eat with friends during the weekday, but with how hard I work it just is not possible unless I want to make myself miserable.
This is exactly why I take time out on Friday nights, Saturday daytimes or Saturday nights to go out and do something weird, fun or crazy with my boyfriend. I need a break from my rigorous routine, which I know is probably unusual, during the weekends in order to hold me over with fun memories until the next weekend.
Once a person learns to manage their expectations with what they can realistically get done in a day I strongly believe the concept of personal disappointment starts to dissipate. When I have an exceptionally bad pain day, or maybe a mother has a sick child for a week, or that high-power lawyer is on a deadline with submitting some important documents to the court; you need to make adjustments to your expectations. Not every day is going to go according to plan, and believe me, I used to beat myself up on a regular basis when I did not get everything I needed to done. When I do have a rough day I accept that day, and realize tomorrow is a totally new one. I’m not going to let myself fall off the bandwagon because I have one or two or even several days of challenges in a row.
Just like a diet … if you cheat one day it is so easy to say to yourself “well, I cheated yesterday, I might as well cheat today… What’s one more donut? … 50 pounds later 🙂 ” If I followed this mentality I probably would not be as mentally healthy as I am today. Don’t misunderstand me, I still struggle on a regular basis with trying to manage my own expectations, but perhaps with age and experience you make a little bit more progress each year. I like to think so anyway!
So the next time you want to beat yourself up for not following your agenda planned out for the day, take a breath, maybe have a glass of wine, go to a strip club, do a somersault or a meditation session (whatever your fancy), and realize that if today is not your last day then you have another one to try again tomorrow.