Hi Guys,
Being bedbound can be a scary place that leaves us feeling helpless.
Often we experience sensitivities to any kind of stimulation, making it difficult to engage with any kind of education, interaction or recovery action.
So the question is; how can we get past this and move forward?
Perhaps hearing others' thoughts can help us crystallise what allowed us to make progress!?
Here are some questions to stimulate your thoughts, I would love to hear what you think! Please comment below!
1.) What can we do when we feel we can do nothing?
2.) What worked for you to make enough progress to engage in other strategies?
3.) How did you cope with the difficulties?
4.) Did you push yourself to engage in something and get out of bed, or did you focus on withdrawing to feel better - what worked?
Please note, we are looking specifically at getting out of the bedbound state, not your recovery beyond that. Please focus your comments around that!
So I thought I would start with my own experience. I felt my period of being bedbound is a bit of a blur, but it’s fair to say it forced me into submission. I did not have the energy to fight it, I surrendered to the experience. I don’t recall doing anything specific to help myself. Instead, it was simply a matter of time. Although I do note that Christmas day kind of forced me out of the bed (onto the couch), which was a start of a change of perspective of what was possible. When I was well enough… Read more »
I spent a lot of time in my bed or on the couch alternating using an eye mask or looking at the leaves. The trees were so bright and green. I let sun hit my face and I pictured myself on the beach. I listened to guided hypnosis on YouTube on how to stay calm in tiny bits of time. I daydreamed about my grandma and the way her kitchen smelled. I actually hugged myself and put my hands on my heart a lot. I would just feel my heart beating because most days I was scared it would stop.… Read more »
That’s amazing Jennifer, thank you for sharing.
Hi Jennifer
Looking at leaves worked for me too, it was calming somehow.
Hi Dan, so interesting what you say. I really learned about the concept of surrendering during my bedbound time! So helpful:)
❤️❤️👍
Hi Dan I have had two separate periods of being bedbound. Both lasted around 3 months. The first was when I became ill overnight. I woke up to being bedbound, after taking a nitrate, prescribed by a doctor. The other was 9 months later. I had started to improve, but I now realise that I pushed myself way too far. Once again, I woke up to being bedbound. As you are aware, these are very scary times. I will be frank and say that I just didn’t want to go on. I have had a good think and this is… Read more »
Thanks for sharing Stuart, glad you are doing better.
The question is – how despite that fear and stress and dysfunction, did we rise above it and get over being bedbound?
Hi again Dan As promised Strategies that helped 1. It took a while, but I needed to accept the situation I was in. I realised that the constant ruminating, guilt, feel of loss was only going to keep me stuck. 2. Having a goal, a purpose was huge. Belief that this was temporary and that somehow I would find an answer. Visualising a better future and focusing on why I needed to get better helped. 3. I never believed that resting long term was the answer, but I had to find the sweet spot. I pushed a little e.g going… Read more »
Thanks for sharing – great insights.
1) emotionally practice trust to the process even if it’s super hard. With that I mean trust in that this isn’t forever and that you will get through this. According to me the biggest suffering is the deep hopelessness and powerlessness not especially the symptoms. Of course the symptoms are very painful but the feeling of not knowing when they end and if they will end are the horrific part and put us in a mental hell .For me my trust increased by one, knowledge and you don’t have to understand the hole dysfunction you just need someone (you Dan)… Read more »
Thank you so much for sharing these powerful insights Mirabel.
when I found your work here, and a functional medicine provider who understood what was going on, I found some hope. Frustration and impatience were some of my biggest enemies because I thought I understood it now and I could get better more quickly. It helped me to do continual brain training and meditation, and I changed my diet and learned pacing. I also found some support communities online, and I learn something continually from other people’s experiences and suggestions. It helped me also to celebrate the tiny little moments and windows of improvement, to continually remind myself it was… Read more »
Thank you for your thoughts Kathryn – hope seems to be such a common theme to help people find some rest!
Most of my worst time bedbound was spent like a baby. A sort of conscious pre-awareness. Unable to form coherent thoughts. I could not tolerate ANYone near me. I chose to remain living alone, struggling. A weekly; bath, laundry, washing up and eating cold/microwave meals left me in that state. It DID mean i had full autonomy and control over my environment, i had absolutely no stress except that which i caused myself and carried within me from my past. By this point i had won my case in court and won enhanced ESA (disability) this crash resulting from the… Read more »
Thank you so much for sharing your detailed thoughts.
It’s really in the detail that we can learn something.
I often get the sense that people underestimate the impact of mental strain in particular. The computer research is just that isn’t it!? On top of it, there is a significant emotional trigger from the hopelessness of the searching and not finding. Finding a way to truly rest is key, I appreciate how you detailed this!
Thankyou Dan! I worried i gave too much detail, but every point felt potentially valuable. I hope others can benefit, learn from my mistakes and successes and shorten their journey
I had a severe relapse with reactivation of EBV and positive mono about 6 years after diagnosis. Never that sick, even when first got sick. This was years ago. It was scary (yet too sick to feel really scared)…maybe serious is better word. Yes, was bed bound for almost 6 months. Like being hit by a truck. Fever, etc. Things I did: Got help in getting to my doctor with assistance He said get in bed and hunker down…he was concerned. I had pain like not had before. He did panels of bloodwork. EBV reactivation and positive mono. He did… Read more »
Sarah, again…
Looking back I think it would have been helpful to have a nurse come in at least every 2 weeks and give me liter of IV saline. If I had known then, I would have.
Now, years later I get an IV saline (nothing added) once a month. Helps a lot. Especially with blood pressure issues (low), dizziness, etc. Helps the ANS.
Thank you Sarah for sharing those wonderful details. ❤️
I needed to be flat for nearly 2 years due to severe PEM and Orthostatic Intolerance. The majority of this time was in a state I considered between home bound and bed bound. I did not have muscle weakness, so even at my worst, I was able to do the very, very basics (bathroom, shower, and microwave meals others made for me) with GREAT difficulty, but I still managed it. I was alone for almost all of this period because social interaction and noise was unbearable. There were a couple of very, very low points of a few months particularly… Read more »
Thank you for sharing this wonderful detail.
Feel free to comment on what you feel is common with other people’s experiences!
Rest, hope, determination, goals, love of family were the major factors for me in getting past being bedbound. (But at the most severe level of illness, not knowing any way out, I was close to despair.) Hope seems to be a common theme here. When bedbound at my most severe level of illness, especially at onset which was sudden, I could do nothing but rest mostly in a darkened room. I looked outside at a lovely tree when I could. This was in 1981, pre-diagnosis, pre-internet. I think I gradually improved with rest. I was motivated to improve, my children… Read more »
Hi Catherine
Thank you for sharing.
I hope your reflections and other people’s comments will help you see more clearly what your next actions need to be.
Hi, I‘m Anju, 33 from Germany. I still have a way to go, but already recovered to being couch-housebound/little walks outside 1,5 years later and engaging in some hobbies like painting, music…(after being 99%bedbound, isolated, hypersensitive, desperate ect). I will share some insights, but before just wanted to say that I did not do any of this perfectly and that it was a messy time (also I did do some unhelpful things that are not listed here;))… and still I feel much better now. So here is what helped me:) 1.) Here is what I did when I felt I… Read more »
Wow, thank you for sharing that detail!
Wow, there are so many incredible insights that have been shared so far! I’ll try to add mine, hopefully a few with a different take. What helped me survive (literally, at my worst) my bedbound state and move beyond it? What worked depended on who I was as a person at the time and what I brought into my bedbound state. I thrive on physical and intellectual motion, very passionate about mountain biking, hiking, and skiing, and dedicated to a highly stimulating, challenging, and stressful career. I love my family and friends, but these pursuits were the core of my… Read more »
Wow, thank you so much for sharing that detail!
Hi Dan I was bed bound a few years ago during Covid, the fact that there was no pressure in socialising or having to turn down any invites as there was a lock down helped me enormously. I stayed in bed all day apart from one hour and 15mins of teaching yoga via zoom. I was crawling on my hands and knees to go up the stairs in my loft to teach, then all I did was demonstrate quickly on the mat and verbally teach the class only to be in tears after and crawl into bed for the rest… Read more »
Thank you for Sharing Alka