As I lie here in my bed, only moving one hand slightly to type on my tablet, I don’t feel completely horrendous. I’m nauseous, in pain, and random muscles are spasming, but I feel like I could get out of bed and into my wheelchair with help. As soon as I move (to roll over, or reach for something, or have my pad changed) I’m reminded why I’ve been in bed over a year with only a few short periods in my chair. Dizziness makes my vision more blurry. My heart does funky dances (races or beats in weird ways, while attempting to escape my chest). Breathing becomes hard. Pain shoots around my body. I get more spasms. I feel incredibly ill.

If I’m lucky the movement induced blehness eases off after a few minutes and I can breathe and think again. Using the bed to move me helps, so long as I don’t attempt to sit too high or too quickly. Most of the time it happens immediately so I know to stop as soon as I can, but other times it takes a few minutes so I’m fooled into thinking I’ve got away with it. It sucks, as it means I can’t move as much as I want to, and moving when I need to (remaining completely still risks bedsores and stuff) is horrible.

If I can I try and concentrate on anything but how I’m feeling when I move. If someone is in here, I’ll try and talk to them (if able to speak) or concentrate on them. When alone, I concentrate on the task and why I’m doing it (such as how my hip will feel better once I’m on my other side). I try and move as quickly as I’m able so I don’t get stuck, though I’m limited by my body in how quickly I can go now.

Hugs are the thing I miss most. Being touched is incredibly painful now, and can cause the same stuff as moving does. If it were just pain I could cope, I’m used to pain. But hugs are so overwhelming that they cause post exertional malaise, where I get worse symptoms and my body becomes weaker a day or two after the event. There are times where the emotional need for a hug makes it worth how ill it makes me, but since if I get much worse I become paralysed and unable to swallow it’s not something I can risk too often.

I’m grateful I’m not as ill as I could be. I have handholds with Johan as they don’t affect me as much. I can tolerate enough light and sound to be able to go on my computer and play games. I can concentrate enough to read and communicate. Most days I can manage something solid to eat. Overall, I’m slowly getting a bit stronger. I just need to remember not to push it to the point of relapse and pray for more little successes.

There are people with ME (and other conditions) who are more ill than me, who would love to be able to do what I can. Just as I’d love to be able to get into my wheelchair or have a hug without payback. I sometimes forget how ill I still am as I compare it to how I was at my worst: paralysed, unable to tolerate any input, and barely conscious. But I’m lucky as I have support and hope. The hoist should get me out of bed. A And I’m going to get better, somehow.

3 thoughts on “Hope

  1. Danni, I really appreciate how your language in this post goes against the challenge of your current circumstances. I feel like I should understand how hope survives in severe ME myself. I can’t say I do, but I’m glad it does. Hoping for more and more little successes for you too.

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