Published in InterAction 78 (Christmas 2011)
Samantha McInnes reads, writes and imagines her way through those bedbound times, accompanied by Joni Mitchell. How about you?
Before I was diagnosed with M.E., I thought there were a million and one activities you could do from your bed. You could build a fort from pillows, use your bed as a trampoline, hide under it, have a pillow fight – the possibilities were endless.
Unfortunately after contracting a virus and subsequently being diagnosed with M.E. the options went from being limitless to being counted using my fingers and toes. However, that doesn’t mean that I can’t entertain myself for hours from my boudoir.
Before I go into detail on how I do this, I need to tell you about what I call the three stages of ‘bed life.’
Rip Van Winkle
Stage one, aka the Rip Van Winkle stage, is the most severe. When your body aches so bad you can’t move it. Unable to even lift your head from the pillow, you can’t concentrate on anything for longer than a few seconds and feel your bed is more of a prison than a comfortable place to rest.
This stage can be the most damaging to my positive mental attitude. It’s way too easy in this state to lie and think of the things you can’t do, things you have lost and why you have this illness. But this isn’t healthy.
To distract myself and maintain my positivity about the situation I put on one of my favourite films of all time: Superman.
I watch this not only because Christopher Reeve is a legend whose own story of fighting against disability and adversity is inspiring but also because I have seen this film so many times that I can recite it from memory. Which means I can follow the story and get distracted from the pity party I was throwing myself without needing that much concentration.
Unfortunately, I can’t do what I usually do: stand up and act out the part of Lois Lane. My favourite part was when I got to pretend I was hanging from the helicopter that was dangling off the side of the Daily Planet building.
Stage two, aka Middle Earth, is when you’re mostly confined to the lying position but you are able to get your body to move around, even if only slightly. Electricity has started to flow to that light bulb in your brain again, allowing you to concentrate on things that little bit longer.
When the Kindle first came out, to be honest with you I wondered what all the fuss was about. That was until one of my friends was kind enough to lend me hers. Within 20 minutes I had realised that this was actually going to revolutionise the way people read books. Not only that, but it was ideal during the Middle Earth phase.
Unlike when reading a paper book, you don’t have to lie awkwardly to read both pages. It’s lightweight, so it doesn’t hurt your arms. The screen has been specially engineered so as not to cause glare and it can hold more books than anyone could read in a year. No, I have not been paid by Amazon to say this. I just really do love them.
No matter if you have a Kindle or you prefer to read your books the good old fashioned way, reading is a low energy task that can be done from the comfort of your own bed.
Another good activity to do during the Middle Earth stage is to listen to music. I don’t expect you to be sitting there trying to rest while having Metallica or the Beastie Boys blaring out of your iPod dock (or Ghetto Blaster if you’re old school) but something relaxing.
I am always a fan of Joni Mitchell’s ‘Both sides now’ album for this sort of occasion. It’s so easy for me to get lost in her deeply moving voice and poetic words and drift off into Joni land for the 48 minutes, 59 seconds the CD lasts for. For me, the sound of Joni Mitchell transports me to a different reality and allows me to escape life for a while.
Coming alive again
Stage three, aka ‘the light at the end of the tunnel,’ is when you spend most of your time in bed but you are able to sit up, move about and leave your prison, even if only for a few minutes.
It’s the stage when you start to think, “Finally, I am starting to see an improvement,” even if it is happening slowly.
This is also when my laptop comes to life again and I start to write. Don’t get me wrong, despite what I say here and what Paul says on p 22, you don’t need a laptop to do this: a pen and paper does the exact same job.
When I first started to write, I wrote all about my experiences with M.E. I saved them all and then from my bed, and with the help of a few friends, I started up my own website to share my story.
You don’t have to post your own writing on the World Wide Web for everyone to see like I did but just getting out everything that you have inside you – be that about M.E., your annoying boyfriend or just why on earth they stopped showing Friends on E4. Putting it in black and white in front of you can be very therapeutic.
I asked some of my friends how they passed the time in ‘bed life.’ This is what they said:
“I make animals out of beads.” “Cross-stitch.” “I lie down and play (some) video or PC games... not all are suitable for that position and which game depends on my mood.” “I knit jumpers. It stops me from spending the little money I do have internet shopping.”
Action for M.E. members also made some great suggestions on the M.E. Friends Online forum, including painting, sleeping, talking to the cats, completing adult colouring books (you can find these on Amazon), listening to audio books and/or guided meditations, keeping in touch with friends on Facebook, making cards to sell to raise money for charity, knitting tea cosies and watching wildlife in the garden.
I am going to finish with what is possibly the most obvious and simple thing you can do from your bed (no, not that – and apart from sleep of course).
No matter what stage you are in: dream, whether it’s a day dream or an actual sleep dream.
No matter what M.E does to our bodies it can’t take away our imagination. Sometimes it’s the most powerful thing we have. I remember watching Blue Peter as a child (Liz Barker was my favourite presenter) and they were doing a segment on athletes, about how they imagine running the round the track in a major competition before they actually do it.
I also now do this, but without the track and the running. I do it with activities I am going to do when I start to feel better again, from small things like being able to get out of bed to big things like hiking up hills.
Because although I can’t do it just now, the feeling of being able to in the future pulls me through.
About the author
Samantha (not pictured), 25, has had M.E. since 2008 after she contracted a virus but wasn’t diagnosed until May 2010. Like Paul, p 22, she runs and writes her own blog, an honest and light-hearted account of living with M.E, to help raise awareness.
View a PDF of this article.