#42 being bedbound

I am not limited.

Hello my lovelies,

I am once again wanting to talk about something I don’t always talk about in public, especially as a young person: becoming bedbound.

I have had chronic pain since 2007, and sometimes I would need a day to recoup but it was pretty flexible. As I grew, the pain in my spine meant a day in bed alone. In 2020, after injuring my knee, what I would learn was fibromyalgia developed. In 2020 and for a long time after I would be bedbound for years more often than not due to overwhelming bodily pain and chronic fatigue. My family would have to bring me meals, I could barely do anything and when I did venture out, it would take days, if not weeks, of recovery.

At the start of all this, I was so confused, upset and frustrated. I fell into a despairing belief of being deficient. I didn’t ‘look’ disabled. Doctors doing nothing but chucking pain medications that didn’t work, endless scans. I thought being bedbound was all my future would be, I felt like I would have no life. It depressed me.

There is so much stigma about being bedbound and disabled, I was in it myself for a long time until I accepted that my future would look different to what I had planned. And that was okay. It’s odd though isn’t it? The fact we hold an idea of what disability looks like? Yet the truth, the raw truth, is we have no idea, we need to abandon the views and perceptions we have of disability. It is more than a spectrum. I also want to be clear: I do not speak for others in my community. I hated being classed as disabled a first. But I now, whether due to faith, learning or both, don’t hold any particular view on my disabled status. I simply am, I simply experience it.

I am far better than I was, overall. I have periods of time where I have more seizures, leading to being bedbound, or pain/fatigue. However, there are times where it rarely happens. When I look back at that time, I realise and have gained insight into the fact I learned, eventually, the beauty of stillness. Sky watching is beautiful when I remember to do so. But, as with everything, it was not a permanent state. My health has considerably improved, and stillness is hard to come by. I am hoping this new Plum Village course helps me to undertake longer term maintenance of stillness.