I mean, barely able or not able to move your body?
Perhaps you can relate to a time you experienced a severe case of influenza or broke a limb that required a hospital stay with the limb in a traction swing. Perhaps you know exactly what I mean.
My definition of Bed Bound is ‘not able to physically get out of bed on your own or it takes a day’s worth of energy to drag yourself to the bathroom and back to bed’.
I recently experienced yet another episode of being Bed Bound.
I’ve been managing a diagnosis of Multiple Sclerosis for almost 20 years, just a bit less than I’ve been a certified yoga instructor. Last year I switched the DMD (disease modifying drug) I was on for over 5 years because I could no longer endure the added debilitating side effects for 2 weeks of the every 4 week infusion schedule. This new DMD is only given 2 times a year! However, the side effects, for me, are still debilitating, but in a different way and last an entire month.
The beginning of June I had the 3rd total full dose – the first is split in two, given two weeks apart. After each infusion I experienced a raw sore throat, lost my voice for about 5 days and other related ENT stuff. In addition, I felt like I was hit by a truck, which in turn dropped a dead elephant on top of my body – kind of like a really bad flu. The fatigue is overwhelming.
Why do I continue to subject myself to these side effects?
I believe there is a time for allopathic as well as holistic medicine. The first DMD I mentioned stabilized the MS progression after a very significant exacerbation in 2011 where I lost all use of the right side of my body, even my tongue. BTW, I was Bed Bound for 2 months that time. This latest DMD has proved after a year to have the same efficacy. Yay!
Bed Bound Yoga vs Bed Yoga
Enough back story… The reason I’m writing is that while I was ‘flat’ in bed or Bed Bound this June for a couple weeks, I tried looking on-line to maybe find some new yoga videos for being in bed. Guess I found the newest, latest, greatest trend – Bed Yoga. I am not judging, but doing your yoga practice ON a bed is not the same as doing yoga IN your bed when you are not able to get out of it.
I found some beautiful morning and evening sequences to start and/or end your day. These appeared to be designed for able bodies that would be getting out of bed and on with their day or retiring into bed after a full day.
I found Camel pose on your bed! My first thought was that if I could do Camel pose on my bed as it was presented, I definitely could get to the floor to do it on my mat, if not try it on a paddle board…
I did find sleepy santosha. This person has experienced being truly Bed Bound. These videos seem to be instruction for after the initial recovery period and getting back on the mat though. Definitely worth checking out.
Accessible Yoga, which I volunteer for and have taught at their AY Conferences, has a portion of their Accessible Yoga Teacher Training dedicated to Bed Yoga that is therapeutic and restorative for a yoga instructor working with a person who is Bed Bound.
I did not have enough energy to do thorough research. I would love to hear of additional videos and sites! Please take a moment to share, if you’d be so kind!
Teaching Adaptive Y.O.G.A. (Your Own Gentle Approach) for all these years now, I have always presented yoga in a positive, optimistic view. That is my true nature. My blog, up until now, has only been about the many positive, free ways you can uplift your body, mind and spirit. I know this all helps, along with diet of course. My neurologists can’t understand how I am not in a wheelchair full time according to my scans.
However, as I’m getting older, the MS progression chews away at my abilities and the therapies take their toll; I’ve experienced bouts of depression and sometimes severe depression. The reality – being Bed Bound sucks.
I am being led to daylight the ‘real’. Like how you feel after a full week in bed without a shower or washing your hair and probably not even brushing your teeth. How it takes the energy of running a marathon just to sit up in bed. How isolated you feel. How no matter how hard you fight, it’s never enough, yet surrendering is not an option. How exhausted you are in body, mind and spirit all the time.
When you see me out, showered, dressed and with some energy, it is because I have spent at least a day or two in bed resting and preparing for this outing. I will be right back in bed recovering for another day or two afterward. Most of my outings are doctor appointments these days.
My husband has been the only witness to my entire journey. Bless you, my Darling! I even have to rally to spend time with our children and grandchildren. I’m their Pajama Gramma! I have a very few dear friends who ‘get it’ and have seen me in my low times. I don’t need to get out of my pajamas if they stop by. They’ll even just sit on my bed with me for a quick visit.
However, most people don’t ‘get it’ or even want to try to get it. I truly hope they never have to.
Bed Bound Yoga
Now Y.O.G.A. - Where to start, when you don’t know where to start.
Every BODY can ‘do’ yoga…
Most people just don’t believe they can, for any number of reasons, even though they have heard of the many documented benefits. So, I am offering the following yoga instruction to every BODY, whether you are Bed Bound or not.
When I am Bed Bound, there is always one asana or physical yoga pose that is available to me or any BODY, – Savasana or usually the final Relaxation at the end of a yoga practice.
Lying on your back, or however you must arrange your body to be as comfortable as possible, become aware of the alignment of your physical structure. Living in an uncomfortable or painful body is the last place anyone wants to be. I am asking you to gently observe your body. I am also asking you not to judge these observations, just notice them.
If movement is unavailable to you, please try to visualize and imagine your body moving.
Observe your feet. Are they warm or cold? Are you able to feel them? Are you able to move them? Which parts of your feet are touching the bed or the sheet? Are there socks, shoes or even a boot touching your foot/feet? If it is available to you or someone can assist you, move your feet hip distance apart. Lengthen through your calves by extending your heels away from you. Now relax your feet. Notice if they stay in that position or perhaps fall out to each side. Notice how they feel now.
Observe your ankles, calves, shins and your knees – the front, sides and even the space behind your knees. Try to lift your knees. Notice your heels pressing down and the muscles you engage in your legs with even the slightest effort. A pillow or bolster placed under your knees may feel good and relieve tension in your low back.
Next, observe your pelvis. Notice if you are holding any tension in your buttocks. Notice how it feels on your mattress. I know that extended periods in bed can cause pressure sores or points. Just be aware of how it feels, again with no judgement. Can you engage your gluteus muscles, then allow them to relax?
Breathe all the way down into your belly, if you can. See it rise and then fall as you exhale. If it’s available to you, place one or both hands lightly on your belly. Allow your belly to be soft. Now try to slip a hand under your low back while one hand stays on your belly. If your arm/hand doesn’t move that way today, just bring your awareness there and/or see if you can feel your low back pushing into the mattress when your belly breath is full. Notice if it changes when you exhale. Does your belly button pull in slightly to your spine?
Check back in with your hips all the way down to your feet. Has anything changed? Do you feel grounded or slightly sinking into your bed as you consciously relax the lower half of your body?
Now try to place one or both hands on the lower part of your ribs. If this is painful or uncomfortable, again just bring your awareness there and observe. Can you see and/or feel your ribs expanding on your inhale? Maybe even feeling them pressing against the bed? Our ribs are designed to move as the lungs fill and deflate. Try giving a gentle squeeze at the bottom of your next exhale. Notice if you might have created just a bit more space as your next inhale fills your lungs and pushes the ribs outward. Rest.
Take a moment to experience your heart beating. Try to take a breath focused into your heart. As you exhale, allow your shoulders to soften. Are your shoulder blades all the way underneath your chest? If it’s available, turn your palms up. This will encourage the downward movement of the shoulder blades. Bring your awareness back to your beating heart.
Allow your arms to be heavy. Feel into the center of your palms. Feel the space around your fingers.
Observe your throat – the base of your throat in the front, the sides and back of your neck. Swallow. Feel the movement that occurs. Soften your jaw. Allow a little bit of space between your teeth and lips. Feel your tongue in your mouth. Can you let the base relax down and the tip of your tongue float up?
Next feel the cool air coming into your nostrils as you inhale and the slightly warmer air as you exhale through your nose. Observe the length of your breath. Observe how shallow or deep your next breath is. There is no right or wrong way to breathe. There is nothing to do.
Observe your forehead. Can you relax the skin above your eyebrows? Can you allow your scalp and even your hair to relax? Notice what the back of your head is touching.
Scan your body from your toes, up through your legs, hips, belly, chest, arms, neck and head. Observe how it feels now. Observe your breath. No judgement, just notice.
Now close your eyes and be present with your body. Stay as little or long as you like.
Yoga is a practice, not a destination. What you experience one day or one hour, may be completely different the next. It may even change moment to moment.
Yoga is definitely available to me on my ‘good’ days. Yoga is also accessible on my worst days. Observing my body, mind and spirit without judgement can be challenging. When I allow myself that experience though, I know I tend to feel better, even if it is temporary.
I know that I have regained function in my body through my yoga practice. Will you? I cannot say. Will you perhaps find a bit of ease in your body, mind or spirit? That has been my experience. Will it be yours? Again, I don’t know. Is it worth a try? You tell me!
Cherie! This is marvelous! ❤️
You’ve inspired me as a person living with serious chronic illness, as a yoga teacher, and as a writer. I want to revive my own sleeping blog just to link to your post.
I’m thrilled with what you’re doing, Cherie. Your voice is so very needed.
Wishing you comfort and energy.
Thankyou for this blog. I’ve been a fitness instructor for 20 years a yoga teacher for 10 and I’m changing my direction from teaching able bodied participates to teaching those people with lifetime disabilities (recently met a lady who is bed bound with MS she ‘loves’ yoga but has become disconnected with her practice as she has become more and more trapped in her body). I shall read your recommendations. Thankyou for sharing your personal journey. Natalie xx
Thank you so much!
I was finally able to get into my website and found your comment.
I am so grateful you will be able to share this in your work.
Thank you for all you are doing.
Yoga is an especially important part of managing a chronic illness, in my experience.
I'm committing to posting videos online now!
Please let me know if there is anything specific I could address for you.
Blessing to you and yours!
I hope you did give it a try!
I haven't been able to get in my website.
Finally figured it out and saw your comment.
I am getting my energy and focus up to start posting more, especially videos.
Old dog with new tricks! I'm learning Instagram, the YouTube channel and now my adult Daughter says to get on Tik Tok!
We're staying put this winter season, so I'm going to go for it!
I hope this finds you well.
Blessings to you and yours!
I ask have MS as well and your words feel like mine. I too started on Tysabri and then to Ocrevus and I know your pain, or at least a version of it. I’ve been bed bound for a month now and my partner is slipping away under the ugliness of this disease as well. He supports me and loves me but it takes it toll. His love language is Quality Time and I find myself absent more than I want but have no choice.
Any advice for bed bound yoga that inspires intimacy in couples that are abled/Disabled? Not sex even, just . . . Closeness and touching and being in the moment with them.
Thank you, again for this - it was straightforward, kind and clear. Thank you, thank you.
I have not been able to access my website and have finally gotten in and found your message.
Thank you for reaching out.
I am saddened to hear that you were/are bed bound. It totally get it.
Your idea for couple intimacy is so important. The closeness and being present helps this crazy journey.
My husband, Kyle, meditates with me. Daily when he is not super busy.
We sit side by side and sometimes hold hands.
That time has become very connecting for us.
I also often ask to help me in the shower. He sits behind me on the bench - we have a sauna in our house - and he loves to wash my hair and back. I in turn, wash his back. He also puts lotion on my back for me. That touch is so comforting.
We also hold hands and/or touch feet while we're sleeping (mostly me awake hoping for sleep...).
I am just getting my energy and focus again to start posting more. Videos too.
I will definitely put up a caregiver/partner series.
Thank you so much. You don't know how much your kind comments are helping me.
Blessings to you and yours!