It’s ME Awareness Week, and so here’s a post about what it’s currently like for me to live with ME. I have pretty severe ME, being almost completely house and bedbound, but have been lucky enough to improve over the last few years. This means I now have choices.

Each day, I attempt to figure out several things. How much energy do I have? How am I doing with light, noise, smells, movement and touch? How well are my hands working? How upright can I be? How much pain am I in? Do I have a migraine coming? I’m pretty good at this now, but sometimes I miscalculate or something unexpected happens and I end up with payback.

On bad days, decisions are simple. The lights are kept dim. I wear my earplugs and ear muffs. Movement and touch is kept to the minimum required for essential tasks like toileting, taking medication and eating. Izzy spends the bare minimum amount of time in my room to care for me. I try and sleep, as I know that’s the best way to cope and get back to better days.

On my good days, I now have options. If I’m doing good (for me) sensory wise, I can watch something on my television. Or I can go on my computer. I’ve got a massive backlog of films and TV shows I want to watch from years of being too ill, so if I’ve also got some concentration I can watch something from my list. If I don’t, then YouTube is great.

If I’m seeking connection to other people, I’ll often watch streams on Twitch. Though I know it’s a form of parasocial relationship, being able to chat to someone live and with others watching the same thing really helps me feel less isolated, especially as you get to know other people in the community. The lack of expectation to hold a sustained conversation makes it much easier and it’s not important if I miss things, plus I can ask if I’m really confused. I’m sad when I miss my favourite streamers because I’m too ill to watch.

If I’m having a good hands day, I have to choose how to use it. Do I eat food requiring cutlery (I normally eat finger foods or liquids through a straw) or do I brush my teeth? I can’t do both, or I overuse them and can do less for myself the next few days, adding extra work onto Izzy. If Izzy isn’t available (sleeping or working) I might choose to play games on the Xbox instead or do some loom knitting. They all hurt but so long as I stop before they start spasming I’m okay.

If I’m having a good dizziness day, then I’ll be able to raise the backrest on my bed and not lie flat, which is something I’ve been working on for a while. I’ve also recently regained the ability to hold my head up for short periods, and lean forwards to make changing my top much easier. I’m hoping it won’t be too long before I can sit upright for a few minutes without either vomiting or fainting.

If touch is more bearable, then it’s time to take advantage of that and have a wash. If it coincides with a good hand day, then I’ll be able to wash my own hands and face, otherwise I need help. To reduce overload we usually use bed in bath wipes, but if I’m really doing good then we can use soap and water to get rid of the skin buildup.

Sometimes I choose to do less for a few days to store up extra energy for special events. These I can’t do everyday, but if I’m careful and time them well I can manage with minimum payback. Being hoisted in my wheelchair to go into the living room or go outside. Having my hair washed or shaved off. Seeing Sammie or a friend. Having a video conversation or one via voice (with text backup). Playing more difficult video games. Having medical or other appointments. Having Izzy join me in bed and cuddling.

My normal days are somewhere between my good and bad days. I’m very lucky to be well enough to make these choices. To be clear, even on my best days I’m still experiencing a lot of unpleasant symptoms. Muscle, joint and nerve pain pretty much everywhere, exacerbated by any movement or touch. Twitching, jerking and spasming. Constant headache, sore throat and flu-like malaise. Severe fatigue and weakness. Sensory sensitivities that though not as bad as on worse days, still require management like sunglasses, earplugs and noise cancelling headphones to go outside. Nausea, digestive issues and double incontinence. Dizziness, motion sickness and tachycardia. That’s the short version.

What happens if I overdo it or an unexpected event happens, like loud noise, strobe lights or strong emotions? Payback. Worsening of my normal symptoms and often new ones as well. If I’m lucky, I’ll get the less bad version and just need extra pain medication, a reduction in activity and a lot of sleep for a few days, then I’ll be back to my normal. If I get a migraine, which has many triggers, then add my antiemetic to that (if I figure it out before I start vomiting) and cold packs.

If I’m unlucky and get the worse form of my payback, things are not fun. On top of my normal symptoms getting worse, I get extra ones like severe muscle spasms and paralysis. Chewing becomes hard or impossible. My digestive system slows to a crawl and I’ll bring up food for multiple days. Speech disappears. Rolling over for pad changes takes everything I can muster, even with help. Often I desperately need to sleep, but I’m in too much pain to do so. Izzy being in the room is too much, and a handhold is agony. There’s nothing we can do except dose me up, heat my penguins and reduce as much stimulation as possible until things improve. The good news is it’s now rare for me to get this form of payback for more than a few days, though I’ve previously had periods of weeks stuck here. If I try and push through payback, I end up relapsing, where I lose abilities I already have and my normal days become more restricted.

It’s taken years to build up to be able to do what I can now. It’s really hard to do less so you can do more in the future, especially as I want to do everything myself and help those I love. I still have the thing where if I’m doing better physically like I am now, things are harder cognitively which is partially why I’ve not blogged in so long (the other reason is a friend died while I was writing a blog post and the grief and guilt fried my brain).

My body still likes to throw some surprises, like getting migraines from not supporting my head and neck properly while propped up and vaginal spasms making my most recent smear test incredibly painful and has my doctors recommending I get my Mirena coil changed under anaesthetic, whereas previously I had both done with no problems. Most things though are going in the right direction.

Having spent so long where what’s a bad day now was a normal day, and knowing that others with severe ME are like that or worse, with less support, I feel so privileged, even though I still want to be able to do much more. The choices I make are hard, but at least I’m well enough to have them.

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