Prior to developing ME, I led a very active lifestyle. I frequently had multiple large projects going on in several unrelated areas. I took multitasking to a whole new level, not because I felt I should, but because I truly enjoyed the feeling of pushing myself and working hard. I loved the “stretch” of it all, as well as the feeling of pride in a project well done. So when ME left me restricted to my home, and eventually my bed, I understandably had no idea what to do with myself. What’s more, I was left with the feeling that I couldn’t really do anything, since every time I tried I ended up causing huge flares in my symptoms.
Over time, however, I learned this wasn’t really the case. There are plenty of things to do from bed, even when living with severe ME. The key is to take things slow. Set limits for yourself, and make sure to stay within them, no matter how tempted you are to do more. Admittedly, on the worst days, when pain or paralysis or other severe symptoms are at their worst, I am capable of little more than simply lying here in pain. But I’ve found if I’m careful to remain within my limits, I will often have days where doing more is possible.
When I say to take things slow, let me emphasize that I mean really slow. When I blog, or do anything else for that matter, I limit myself to no more than a few minutes of activity at a time, several times a day. While this may seem intolerably slow, keep in mind that even a snail can climb a mountain if it climbs a little each day. Assuming it doesn’t freeze to death. Or get eaten. But we’ll leave those out of our analogy. Also keep in mind that when I’m resting, I’m really resting. This means laying in my dark room with my eyes closed, and not allowing my brain to race. For the latter, I’ve found sometimes playing soft, simple music (Gregorian Chants are nice) or half-listening to an audio book at a low volume can help keep my mind from taking off. It gives my mind something to focus on, without demanding that it pay full attention and thus wear itself out even more. Listening through noise cancelling headphones can help filter out excess noise and make things that much easier on the brain. Sometimes my noise sensitivity is too much to handle even the softest setting through my headphones, but on days I can handle it, I find it very helpful (and if you half-listen to an audio book enough times, eventually you’ll get the whole plot!).
So what do I do every day? How exactly can one truly live from bed? This is something that is probably different for each person, as capabilities and interests vary. That said, below are a few of the things that have helped me on this journey. Please note, I am not affiliated with any of the products or websites below, and do not profit in any way from them. I’m simply sharing links and ideas that I find helpful or interesting.
1. Headphones – As mentioned above, I couldn’t live without my noise cancelling headphones. I’ve tried many different brands and types, but the only brand whose headphones work worth a darn in blocking out excess noise is Bose. They’re not cheap, but their active noise cancellation technology is very impressive. Basically, the headphones electronically sense incoming sound waves, and produce silent (to us) outgoing waves that cancel them out. This technology also recognizes noises you are most likely to want to hear and does a decent job of allowing them in at a slightly better level. People who try on my headphones always have the same reaction: a jaw-dropping “Wow!” Surprisingly, the newest model, an ear bud setup, does a far better job of blocking out noise than the last model, which was a regular looking padded headphone setup. The ear buds also fit extremely well. I’m someone who has never been able to wear ear buds comfortably, but these have an entirely new design that just plain works. I even forget they’re there! The older design of Bose headphones also works well, for those who prefer that, but while it does block out noises amazingly well, the ear buds do even better. As you may be aware, Bose products aren’t exactly cheap. It took me forever to save for the ones I have. But trust me when I say that for people with severe noise sensitivities, they’re worth every penny! Click here for a current listing of Bose noise cancelling headphones.
2. Books – I mentioned above my love of audio books. I also enjoy reading ebooks via the Kindle application on my tablet, on days when my physical and cognitive capabilities allow for it. Something few people are aware of is that Amazon and Audible have a deal going where often, if you purchase the Kindle version of a book, you can purchase the Audible version for just a few dollars. Even if you can’t read the Kindle version, sometimes this allows you to buy the audio version for less money than purchasing it alone. What’s more, the two versions sync progress with each other! This means you can start reading today, and pick up listening tomorrow right where you left off in the Kindle version, or vice versa. This is extremely helpful for those of us whose needs change from day to day (or even hour to hour!).
3. Sports – I never enjoyed sports when I was healthy. Sure, I loved the outdoors, hiking, exploring, even playing softball with friends, but I never got that interested in organized sports on TV. Since becoming ill, however, I’ve found watching sports provides me with yet another way to relax. Sometimes I even come away from it feeling like I’ve been outdoors! Slower sports work best for my brain, so I tend to gravitate towards golf and baseball, but experiment a little and see what works for you. Side note: When watching sports (or anything else) on TV, it can help to go into the settings and turn the backlight all the way down. This helps a bit with the brightness factor. Dark sunglasses can also help (search Amazon for “5.0 safety glasses” to find something super dark, or click here to see what I use). I’m not able to handle the brightness of the television most days, but when I can, that’s how I do it.
4. Tablet – I’ve mentioned my tablet before. It’s how I do everything. I cannot physically handle a laptop anymore, so I rely on my tablet as my window to the world. I use it to blog, connect to Facebook and Twitter, follow sports, read, learn, listen to music and audio books, and much, much more. My tablet runs on Android, and one application I’ve found extremely useful is called Lux Lite. This app allows me to set the screen brightness to a level far lower than what pre-installed software typically allows. There’s also an app called Twilight that places an orange sheen over the screen, which drastically reduces the sensation of glare against my eyes. Very helpful. Also helpful is an application called Speech Assistant AAC. This application allows those of us with difficulty speaking to create custom words and sentences (and categorize them for quick access), then have them displayed and/or spoken by the tablet at the press of a button. Definitely a huge help for some of us with severe ME.
5. Blog – Okay, so I’m relatively new to blogging about ME, but already I feel like part of the community. I can’t recommend it enough! Even if it takes you weeks to prepare each post, the feeling of accomplishing something, getting good information out there, and being understood by others in similar situations is absolutely priceless. And you don’t necessarily have to blog about ME. Feel free to start a blog about any topic that interests you. Before you know it, you’ll find yourself part of a community of people who share the same interest. This is a great antidote to the loneliness and isolation brought on by this illness. Twitter is another great option for people with ME. Because it limits messages to 140 characters, Twitter is all about bite sized communication. And it’s chock full of people with ME! Definitely something to consider if you haven’t already signed up.
6. Learn! – I’ve always been a person who frequently brings up questions and craves to know the answers. Thanks to the rise of the internet, I now can research any topic for free. I also enjoy more formalized learning as a way to better myself and expand my knowledge and interests. There are loads of resources out there for internet based learning. The UK has something called The Open University which allows people to study at their own pace to earn a degree. Here in the US, we have online universities, but their schedules tend to be too demanding for people with severe ME. I’ve found a website called Udemy incredibly fun and useful for learning. You can’t earn any degrees through it, but you can learn about a huge variety of topics from qualified instructors. Classes aren’t free, but the few I’ve taken have been incredibly well laid out, and allow me to go at my own pace. There are loads of similar websites – many are even free! I chose Udemy for several reasons, including its Android application, but another option might work best for you. Don’t forget to search Youtube as well – I use it all the time to learn about various topics. You’d be surprised how many lectures and informational videos are out there! As always, be careful not to overextend yourself. Remember that cognitive exertion is nearly as hard on the body as physical exertion. Take it in bite-sized pieces. Remember, slow and steady progress is still progress!
7. Pets – One of the things I’ve struggled with when it comes to ME is losing the ability to care for others. I used to enjoy providing for the needs of both people and animals. Sadly, ME’s severe restrictions mean I can no longer do this – I struggle enough trying to meet my own needs! I still benefit loads from cuddling with my dog, and her training as a service dog still comes in very handy, but I miss the feeling of providing for her needs myself (my husband now cares for her instead). Several months ago, I realized this need to care for something living. My husband and I brainstormed small pet ideas, looking for something I could keep by my bed and care for almost entirely on my own. This pet needed to be a silent, low maintenance, non-allergy-inducing animal that didn’t require light or a lot of space or specialized care. At one point my husband joked about getting a snail, which reminded me of one of my favorite books about someone with ME: “The Sound of a Wild Snail Eating.” I did some research, and was surprised to see quite a few people keep snails as pets, and they fit our criteria perfectly! So we got some. Now I have a pet beside my bed that I can watch while laying here quietly at night. Most importantly, I care for my snails almost entirely alone. It’s a good feeling, and another emotional need met. If you don’t already have a pet, I urge you to consider something suitable, as long as there is someone in your life who can help out with whatever you are unable to do yourself. Animals bring special joy and companionship to our lives – and who couldn’t use more of that?
8. Skype/Messaging/Email – I don’t know about you, but for me, verbal communication is incredibly draining, and often difficult or impossible. I have found various means of typed communication work much better for me, and most people are willing to use it if you make them aware of the situation. Personally, I make frequent use of the Skype application on my tablet (for typed messaging, not voiced). I also use email and text messaging. These options give me time to think about my response before and during typing, thus removing the pressure to immediately comprehend what’s being said and come up with a clear reply right away. Facebook, Twitter, etc can provide similar services – just be careful you don’t get caught up in all the other conversations going on and push yourself into a flare!
9. Netflix/Hulu – Most people stuck at home are aware of these websites, but I thought I’d mention them anyway. I’m not always up to the combined audio, visual, and cognitive stimulation of watching movies, but when I am, they’re a wonderful way to pass the time. Both Netflix and Hulu have wonderfully designed Android applications, so I am able to watch on my tablet, which allows more control over brightness and volume than a typical TV setup. I watch all sorts of shows: documentaries to further my knowledge/interests, movies, TV series, etc. Even better – you can watch anything on either of these websites for short periods of time, stop to rest, and pick up where you left off once you’re up to it again. Pausing frequently to switch tasks or rest can actually enable more time watching in the end.
10. Journal – One thing I overlooked during the first several years of this illness was the importance of journaling. I used to journal all the time as a teen. I found it to be a wonderful way to sort feelings, learn from circumstances, and grow as a person. For some reason, once I reached adulthood I stopped journaling almost completely. I only recently picked up the practice again, and boy does it feel good! Personally, I use an application on my tablet to write, but pen and paper work just as well. So would a computer program, if you’re able to use that. The important thing is to write what you feel on a regular basis, even if you only manage a few sentences at a time. Get it out. You’d be surprised at the revelations and personal growth that come from regular journaling. I can’t recommend it highly enough!
So there you have it. Ten ways to regain some life while stuck in bed. Healthy people may look at this, especially the part about only being active for short periods of time, and think this is no life at all. I don’t blame them – I would have said the same pre-ME. But when illness comes and takes away everything you ever loved, any part of that you’re able to get back becomes hugely important and very much appreciated. ME teaches us to take the slow road. It helps us notice things other people cannot notice, and appreciate things other people cannot see. For that, and for the ability to have any quality of life at all within this illness, I am grateful.
Edited to add: Dannilion was kind enough to leave a comment with a link to a similar post on her blog. Her post focuses on the more physical aspects of being bedbound, and things to help with that. Since I feel it complements this post so nicely, I thought I’d add the link here so those who are interested can hop on over and read it, too! Here’s the link: Perfecting Bed Life