Altered States

Being ill is like being in water. A shower, a bathtub, a swimming pool or the ocean, it’s a state of being which gets in the way of anything else you might want to do, Whatever ambitions, needs or desires you have are in a state of suspension, because whatever is going to happen next, you first need to get out of the water.

I got ill at the end of 2007. I was diagnosed with ME (Myalgic Encephalomyelitis / Encephalopathy) in the summer of 2009. Having ME is like being in the ocean. Every movement or action is weighed down by the pressure of being submerged in water. You move around, go through your day, submerged in water, but eventually you have to stop, to rest, because just walking across the room is a feat. Sometimes, you think you can see the promise of normalcy, land on the horizon, so you rally what strength you have and start swimming. But the land is actually far away, and before you make any significant progress, you break under the weight of the water. 

The analogy of treading water is often used to describe depression or the psychological stress of living a life where you're not able to find stable ground, struggling to keep your head above water so you don't drown. In contrast, ME is a physical rather than a mental illness. The symptoms are physical exhaustion and pain, often intense pain. Your whole body is in pain. There's a deep, heavy ache in your limbs and joints and you can’t even think about anything except getting through the day, waiting to feel better, waiting for a good day.* 

My personal marker was lifting my arms. If I could lift up my arms, raise them up to or past a ninety degree angle - enough to take off my pyjamas - I was having a good day.

From this Care2 article on the healthy beneifts of walking in the forest.  

In 2014, I was forced by NAV (the Norwegian Labour and Welfare Administration who support the sick and unemployed) to go on a course to assess my limitations. I told the woman at the assessment centre that I was too ill to attend. She said I needed to attend, otherwise I risked losing my right to benefit. I told her I couldn't even get dressed. She told me I should just come in my pyjamas**, as though not being able to get dressed was the only issue I had, as though I could sing and dance and walk the thirty minute walk to the bus stop and sit in a class room all day as long as I was allowed to so in my pyjamas. I was dumbfounded. I didn't know how to explain it. I can't even get dressed. I can't EVEN get dressed. How I else can I say it? I can't do the very first thing required to have a normal day. I tried to explain that not being able to get dressed was an indication of my limitations, but that didn't count she said. I had to turn up to qualify for assessment.

I spent most of my days watching television (and knitting when I could)

Fortunately, I haven't had those kind of symptoms for a while. I'm still easily exhausted, I need to rest often, but I like to think that one day I'll be 100% symptoms free. For the past week though, I've had a bad cold. Compared to the treading water in the ocean of ME, having a cold is like sitting on the sofa with your feet in a bowl of warm soapy water. It's not life changing, but while your feet are wet, there's nothing you can do but wait, which is frustrating. At some point the water starts to chill and all you have to do is take a towel and dry your feet. Soon you’ve forgotten what it was like to be anchored to the sofa by the bowl of water. You don’t give it any more thought.

I often think about all the years of my life that have been ‘wasted’. I think about what I could have done in that time. I could have studied to be a doctor, lawyer, engineer or architect. I could have trained as a carpenter, a hairdresser AND a nail technician. I could have written a novel, travelled the world, set up a business AND learned to drive.

 From Business Insider's 12 Ways to Get Paid to Travel the World

It’s easy to look back and chide myself for not having done any one of those things, but then I remember that I didn’t because I was in the ocean.

*If you've ever had a bad dose of the flu, where you feel like you were hit by a truck and you can't get out of bed, it's like that. 

**I could list here all the times people have said something that I was too astonished to respond to, such as "I wouldn't mind spending a year in pyjamas!" or "You just need to go for a walk and get some fresh air!"... but I won't.