I went to bed about three hours ago – yup, at 9.15 pm – because my eyelids were too heavy to keep watching TV and I figured this would be a good way to catch up on some much needed sleep. Well, that train has officially left the station! After a few hours of tossing and turning, trying to get comfortable and almost falling asleep but then waking up again, here I am, sitting at my living room table, stuffing my face with endives and cashew nuts (yeah, I need to buy food).
This afternoon, as I was on my way home from work, a woman entered the bus with two small children, carrying one of them in her arms. She ushered the children into a seat and then sat down next to them. She then called out “thank you” to the bus driver, who drove off only after all of them were sitting. I was surprised by this, because 1. it was very kind of her to thank the bus driver and 2. it’s somewhat rare for bus drivers to be this accommodating, unfortunately, even though trying not to cause passengers to topple and get hurt seems to fall under basic human decency / regular protocol for bus drivers. Also, I’m sure there are many kind bus drivers and the few that aren’t may just have ruined my perception of the entire profession.
The incident reminded me, however, that I have the tendency to be overly thankful for behaviour that should be considered normal for any decent human being. The bar (of expectations) is apparently very low, so much so that I often end up feeling like I owe the other person because they were so kind to me (which seems to be something that doesn’t happen often, especially when dealing with strangers). I feel like disproportional thankfulness is something that especially women are prone to, because we aren’t as used to being treated with the appropriate amount of respect and kindness and usually have to work much harder to “deserve” being treated nicely.
I’ve been in pain all week, which is probably the reason why I’m not sleeping right now. On top of the obvious effects of chronic pain – you know, PAIN, low energy, general discomfort, trouble concentrating and sleeping, worrying about one’s health, lack of spontaneity, excessive planning in order to accommodate needs, meal prepping, and so on -, it risks having a serious impact on relationships, and on the state of one’s mental health. It’s difficult to know what’s the right amount of talking about the issue.
I want them to know what’s going on with me. But am I exaggerating? Do they think I’m too sensitive? Is my tolerance for pain too low? I should probably just pretend to be fine and not be a burden to everyone.
It’s really difficult to make people understand what’s happening to me, especially since pain levels vary over time. I may be mostly fine for a couple of weeks and then miserable for weeks on end. I may tolerate certain foods one month and experience the worst flare the next month, even though I didn’t change a darn thing. I may be spontaneous today and curled up on the couch for most of the coming week. On some days, I run 10K. Other days, I sleep for ten hours only to wake up exhausted. I don’t want to be “the complicated” friend. The people-pleaser in me doesn’t like to ask for people to accomodate my needs. I have a hard time asking for help, because deep down, I believe I should be autonomous and not get on people’s nerves.
I’d love for everyone to read my mind, to just know what I can tolerate on any given day, especially in terms of energy levels. It’s hard to talk about my health issues, because I don’t really know what they are (for lack of an actual diagnosis) and therefore I often fear that it may all be in my head. Which is what I’ve been told many times over the past 16-ish years. And yet, I know that this amount of discomfort can’t all be the product of my messy brain.
It’s sometimes difficult for me to accept that people may never know what my pain and/or discomfort feel like. It’s a lonely place to be in and I often feel misunderstood and judged. But the truth is, they don’t need to know what it feels like. They just need to accept my pain and all it entails and make some space for it.
I’m the happiest when I feel like I don’t need to explain myself over and over. When people acknowledge that I’m in pain and that my experience is valid, without constantly trying to fix me.
Which leads me to my mental health: I sometimes wonder what got to me first – am I in pain because I’m stressed and anxious or am I anxious and stressed because I’m in pain? Sure, being stressed is never good for any kinds of (chronic) conditions and it has a tendency of amplifying an already dire situation. BUT I know that I found myself in terrible pain despite the fact that I wasn’t stressed or worried on numerous occasions. It’s a problem that’s similar to the one with the chicken and the egg – which was there first? It’s probably safe to say that stress may have contributed to the emergence of my condition, and my pain levels surely played a part in the occasional deterioration of my mental health. It’s hard to stay positive after having spent all of your free time of the past week on the couch or in bed, with a heating pad strapped to your middle section at all times.
This is where practising self-love, or even just self-acceptance, becomes particularly challenging. It’s not easy to love yourself while hating your body for making things so much harder than they already are.
Anyway, I should probably head to bed (again) and try to get some sleep.
My heart goes out to all of you who are struggling – I see your pain and I feel for you 🧡.