Today I have a wedding of one of my oldest friends, but I woke up in blinding abdo pain and with a crippling UTI. I should just stay in bed, but last year I missed 3 really good friends weddings because I was in hospital, so there is no way I am missing out on this one!
I am feeling really anxious about it, though. On days when I should just be in bed, even getting up and getting dressed is a mission, let alone, getting up, getting dressed, doing makeup, driving an hour, putting up a tent, and then attending a wedding!! The joys of having a tent near to the wedding is that I can sneak off and rest through chunks of the afternoon, though. There's no way I could do it without that.
My angst about the day unfolding as it will, has got me thinking about things I need at events like this. The ways people can support me, or someone else struggling with chronic illness and/or chronic pain, to make these events less nerve-wracking, isolating and stressful. These might be different for other people, but this is some of what I need:
1. Don't make fun of me needing to carry cushions around with me or needing a mattress & duvet to camp with.
I used to be able to just sleep anywhere -- camp in the woods without anything but a bit of tarpaulin, or sleep on the beach for days on end with nothing but a towel as a pillow. Now I need a full single mattress, my pillows, and my duvet. I need comfort. I cannot lie on hard round for longer than a few moments without blinding pain. I cannot sit on hard seats for longer than a few moments without feeling like someone is stabbing me in the pelvis. The only way for me to be able to attend events like this (or go anywhere outside my bedroom!) is with a cushion or a mattress or both.
2. Offer to carry things for me.
Simple things like someone offering to carry something for me, makes such a difference. Not only does it help with pain (carrying things make my pain so much worse!) but it helps me supported, which helps me feel a lot less anxious.
3. Check in with me and ask how I am doing throughout the day/evening.
Having someone I can be totally authentic with about how much pain I'm in, or how much I am struggling - or not struggling! - is such medicine to me. I feel so much less alone. It relieves a lot of the stress that events can bring, which in turn actually makes my pain less (because when we are feeling stressed and not relaxed, our pain is always worse, right?). Also, instead of going off to my tent or somewhere hidden to rest, knowing someone out there in the masses understands and knows where I'm at, helps me feel able to rest in public. I've got "back up" if anyone doesn't understand, or challenges it, or takes the piss.
4. Don't pressure me into doing anything I don't want to or can't do.
I would love to get shitfaced drunk with you and dance until 3am, but I can't. It's enough of an achievement that I am here at all. When I say I'm going to sleep, don't try to get me to stay -- I feel rubbish enough as it is, having to leave early. Let me go, because I am so easily swayed to stay and then almost always regret it the next day when my pain levels are so much higher and I feel even more ill than I did the day before.
When I say no to a drink, don't joke that I'm boring or need to live a little. If I turn down some cake or something else I can't eat, don't try to make me eat it regardless of whether it'll mess up my body. If I say no, it's because it really isn't worth the consqeuences! I really struggle saying no and setting those kind of boundaries, so when I do manage to say it and look after myself, I really need to be listened to and respected. I can easily drop the boundaries I set, out of fear of what people think or my constant FOMO (fear of missing out), that results in me frequently not listening to my needs!
5. Celebrate the fact I am here doing something, but don't get the wrong idea that it means I am "better" or "okay".
Recently I've been struggling with people seeing me out and about and thinking that must mean I am "better". It doesn't! It's incredible I'm not completely bed bound and in hospital like I was last summer, but I still feel 108 years old, and am still in blinding pain every moment. I am so grateful I am able to do things like go to friends weddings, or go to the river or the beach or the allotment, but I will spend the following week recovering and am always, always, in blinding pain and discomfort whilst I am doing these things.
Celebrate with me that I am well enough to be here (because this celebration and acknowledgement of where my health is at, is medicine and really healing), but do it with the empathy, understanding, and awareness that it doesn't mean I am pain free or am okay enough that I won't pay for this later/the next day.