My mom, as usual, is right. It’s one of those things you learn as you grow up. I was telling my mom how awful it was to resist smiling when the smiling exacerbated my pain. She told me that while smiling uses a lot of muscles, frowning uses even more muscles. And I, realized that while I was maintaining a neutral expression rather than frowning, the effort to not smile was itself both a physical and psychological strain.
I called a maxilofacial surgeon the night before leaving home (friend of a friend) who recommended I start a muscle relaxant and it has made ALL the difference. Now I can smile more, talk almost normally, and chew soft food (my jaw still makes clicking noises which warn me to slow down).
It still hurts a little bit to laugh hard or smile for a long time, but honestly, I just feel better overall that I don’t have to resist smiling. That in itself was really deeply affecting my wellbeing. Realizing that when I smile, I myself feel better, and that my smiles get mirrored in those in front of me, recreating a positive cycle.
So…. I can smile sometimes. I have to stop a bit and rest if I do it too hard for too long… But it feels good to smile. Even tiny ones. Sometimes full on big ones.
I’m overall better but tire more easily than usual. This tiredness is not foreign to me at all. I think I have had this problem for longer than I knew. But I would attribute it to doing too much childcare (e.g. Carrying my daughter too long), lack of fitness, or overexerting myself (e.g. By carrying stuff around). But now I know it’s not just that and I understand how not doing that can delay my exhaustion, but that the exhaustion isn’t always my own fault. I like being able to put my finger on what I’ve done wrong to get to pain I’m in, but now I know it’s not only or always within my control. My body is still mine, but it takes some orders from some traitors in my body that are fighting it, and I have to take a bunch of medications to put it back on track that makes my body behave in even weirder ways…
So just taking it every day at a time.
Some every day notes…
- I have used disabled bathrooms. I’ve done this before when I had my kid with me because anyway in UK/US some people label these “diabled/family/changing rooms). I always always found it excruciating to get into a small bathroom stall with my kid. She’s old enough to go on her own, but sometimes she’s uncomfortable and just needs me to stand inside rather than outside the door. With my more limited mobility this becomes torture. So if it’s a day she won’t go on her own, I’ll go into one of these with her. I love that a bathroom at Heathrow said “not all disabilities are visible”. I don’t officially count myself as disabled. I know I’m far from it, not in that stage of my illness, not yet. Another example next.
- My husband told me on the bus to use priority seating when there were no other places to sit beside my kid. But for example on the bus, I’ve never done that. I try to keep it free even if no one seems to need it. But I realized I cannot firmly grip anything to support me while standing – I can but not for a long time, and my hand hurt yday evening because I tried. So yeah. No standing on bus rides anymore (I did listen to my husband yday but I did stand up early when we had to get off and bus lurched to a stop, so it was still painful. Who knew?)
- In UK my credit cards require signature not PIN code (don’t ask) and it hurts to write so signing is a challenge and I have to explain this for people to understand why my signature looks weird
- Was trying on some clothes at M&S. The lady gave me the disabled changing room. I think because I had a kid with me, not for any other reason. It helped, the extra space. On the way out, I took what I had tried and gave back the hangers (and apologized for breaking one). The lady told me I should bring back the trousers in their hangers. Had to explain I had arthritis and opening trouser hangers is extremely painful for me. I could try clothes because I just had to pull them out. I cannot actually open those clips on trouser hangers at all.
- When I buy something to drink, it’s really hard to unscrew a cap or open a lid. I’ve usually had my husband nearby to help but don’t know what I’ll do when traveling alone. I’m concerned that people look at me and see a healthy young person and wouldn’t understand. I’m also concerned that people simultaneously see a headscarved darker skinned person and just don’t want to talk to me at all (in London this is not a problem, it’s so diverse I can find another person of color easily! Not sure about Coventry or Bristol).
- Scary scary moment: At the park yday, my husband left my kid and me to play in a small patch of sunshine and was gonna come back in a few minutes. While I told my kid to play nearby so I could see her and reach her if needed, I don’t move as fast as usual and can’t run after her while carrying her bag and stuff right now, so my definition of “nearby” is stricter. A young woman walked up to me and asked if she could ask me something. I can’t tell you what it was about her that gave me jitters but I didn’t want to be unkind. She was young and white and pretty but something was off. I told her “sure, but very quickly because I need to watch my kid” (realizing that what made me jittery was that she was standing in my line of vision and I was panicking because I couldn’t see my kid anymore) and the woman immediately backed off and said, “I’m sorry, didn’t realize you had a kid” and moved away. My eyes darted towards her as she moved along the park (for some comforting reason, my kid came to me immediately after the lady left and sat and drew next to me for a bit – kids have good instincts that way, whew). The lady didn’t hurt anyone but she was walking with her shoes not properly fit into her feet, and I’m not sure what that was about and I remember her teeth looking strange… But nothing particularly threatening. I don’t think she was threatening. But what if she had been and what if saying I had a kid would have given someone ammunition to hurt me more or to hurt my kid? What if someone tried to hurt or kidnap my kid and I couldn’t get there fast enough? Now I’m worried about this so much more than usual. I’m no longer even humanly invincible. I don’t know my limits, though I’m sure I’d push them beyond humanity to defend my child… But that limit has still gone down (temporarily I hope) and it’s scaring the crap out of me.
Gosh. I didn’t realize how worried I was about this until I woke up at 3 or 4am and wrote this post.
I got arthritis gloves that are supporting my fingers (still a bit painful and semi-finctional) and wrist (much better) and they have allowed me some comfort like to open some bottles and look through clothes racks and stuff. I don’t think I should use em when I eat, though, and have heard people sleep with them but that would suffocate me so I won’t do it.
I don’t know if I’m noticing this more than usual, but my hotel and the airport and Oxford street have an inordinate number of people who are either on wheelchairs or who have limited mobility. I don’t know if this is just me projecting or noticing, and I’d be ashamed if I hadn’t noticed before. I remember when I was pregnant it seemed everyone was pregnant. This one is really not exaggerated because I had 2 first cousins who were pregnant at same time and 2 second cousins. And that is really a lot (my family isn’t that huge). I also had 2 other women in my department (which has about 10 women, only 5 of them capable of having kids at this age/situation) pregnant and we all delivered the same month. That one is just a truly crazy coincidence. Incidentally, my health issues coincide with many other health issues in my department, so we have a weird contagion (metaphorically) thing going on.
Ok.. Gotta stop and get some rest.