Thread by @Lycomorpha

Today I'm going to tweet a bit on #mypainday about my experience with chronic pain, bc I think it can be hard to understand if you don't have it.

I'll add some drawings from my pain sketchbook too. Because pictures! ✏

I have chronic pain because I smooshed 2 arts of my spine - the lumbar part at the bottom, and the cervical part at the top (my neck). This affects the spinal nerves that control my legs + foot, & arms + hands. So those are the parts that hurt.

I manage my pain with the smallest amount of medication that is still effective on any given day, physio exercises, psychological exercises, & a supportive partner #mypainday

I have the advantage of having a PhD in pharmacology, specialising in neuropharm. So that makes understanding my pain & managing medication *a lot* easier, & gives me a privilege; medical professionals usually listen to me #mypainday

I know a lot of my friends with chronic pain find it hard to get support & be listened to by clinicians. So I don't take that lightly.

Anyway, right now while I'm tweeting I'm lying down stretching my legs. My hands hurt alot so I'll tweet more in a bit.

#mypainday

Ok I'm back lying down stretching. My leg rly hurts today. Stretching & exercises don't actually fix the probs with my spine/spinal nerves obvs. But they keep all the rest of my body fit to support my spine etc #mypainday

My right leg & foot are usually the worst. At this stage they are unlikely to get better. Nerve damage. Meh.

At least the sensory hallucinations that come with are interesting? Idk? 😬 #mypainday

My right foot permanently feels light there is an imaginary line down t'middle of it. One side is numb, the other not. The effect is to make it feel like I'm walking on a tennis ball every time I put my foot on floor #mypainday

Sometimes it feels like my toes are trying to climb off my foot. Sometimes like my foot is swelled up like a giant water balloon.

It's not. But it's so convincing I used have to check all the time!

See? Fascinating. It'd be even more so if it didn't hurt tho eh?!

#mypainday

My right foot & leg are my biggest mobility prob most days. It's hard to explain to ppl bc there's nowt wrong with em. It's all wrong because of spine & the nerves that control things. But my leg itself is undamaged, & so a lot of ppl think I'm making shit up.
#mypainday

If I had a chance to communicate 1 thing to abled/non-spoonie ppl it would be this;

YOU CAN'T TELL HOW DISABLED/ ILL/ IN PAIN SOMEONE IS IN JUST BY LOOKING AT THEM.

Pls remember that. Thanks. #mypainday

Lying down again. Neck has started up. Bleh.

Another hard thing to explain is that altho I'm not yelling or crying etc, being in constant pain is still an energy-requiring process...

#mypainday

So I have to constantly use energy in ignoring pain to go about my day.

Eg rn, my brain is constantly saying "your neck hurts, your back hurts, your leg hurts, your foot hurts, your neck hurts, your back hurts, your leg hurts..."

It takes a lot of spoons to ignore.

#mypainday

(If you don't get the spoons/spoonie references, read the spoon theory of chronic illness here; butyoudontlooksick.com/articles/writt… #mypainday)

I think it's also hard for ppl who don't have chronic pain to believe we can be in that much pain without howling & crying. But you get 'good' at being in pain over time.

Like, also I coulda spent all today howling but yk… shit to do, eh?

#mypainday

(It's not like I never howl, & I pretty much spent my 1st 6 months of spoonie life continuously wailing. But i learned to manage. Like a lot of ppl in UK, altho for now we have NHS, many of us can't get help bc we're not sick *enuf* for the DWP etc. So I had to get back to work.)

I'm self-employed rn. I've taken day off today!🎉 (Tbh bc I have no spoons... 😬)

I was lucky when I 1st got sick I was a resident artist in a lab with 2 other spine-spoonies! So I had a lot of support & advice that was crucial to me

#mypainday

Today I'm tryna do stuff around the house. I need to tidy, but I keep having to lie down. Which frankly is getting up my crack, but what can ya do eh?🙃

Have some art.

#mypainday

My partner just bought me a giant bucket of milky sugary chai, because they are the best human 💖 Having someone supportive in my life had made all the difference. We've re-engineered a lot of stuff in the house to work for me. I love that.

#mypainday

Like adapting a place can be really fkn expensive, so I guess that's a handy thing about being sciencey engineering-y ppl. I've never once felt my partner considered my spine probs a downside. It's all just an engineering challenge. We will go to screwfix, etc. 😂

#mypainday

Having someone willing & able to learn how to fit medical grade bath rails saves me a shitload of money. I'm lucky. I wish that stuff didn't come down to luck, bc not everyone has that option. Ppl think disabled ppl get all that from govt... Nopetty-nope-nope-nope.

#mypainday

So I'm having another rest as we get into the 'everything hurts' ⅓ of day. I'm planning how to time/organise taking pain meds, making dinner, having a shower.

Gotta have a *strategy* for all a this.

In my head the mission impossible theme music is playing 😂😂😂

#mypainday

Having a shower is the biggest arseache of that lot, bc it's tiring & I need to wash things in right order. I have strategic showering honed to an Olympic sport level 🏆🏅

This is also where knowing other crips n spoons comes in handy (tips/advice)

#mypainday

While I'm here
💖💖THANK YOU💖💖
to everyone on #spoonie #disability & #cripsandspoons Twitter. Learning to manage this would have been a lot harder without you 😘😁💖 #mypainday

Some tweeps you could follow whose tweeting has helped me; @DisVisibility @SFdirewolf @alexhaagaard @zaranosaur @dominickevans @TheBreeMae @Lollardfish @PunkinOnWheels @Enceladosaurus @crippledscholar @CripTheVoteUK @chiller @annieelainey... #mypainday

Also @Imani_Barbarin @cherryrae @TitoTitoq85 @DrFrancesRyan @EbThen @sesmith @DisRightsUK @DisabledWriters @esmewang @phineasfrogg @RebelWheelsNYC @soundcube @latentexistence @amaditalks @AndrewPulrang this list is not exhaustive AT ALL. Too many tweeps!!

Did I adf @coffeespoonie? Also @riotheatherrr @RebeccaCokley @alexvtunzelmann @VilissaThompson @actual_vortex

OK let's just assume I forgot a zillion ppl, & apols 🙏💖

Right, back to my strategy; I need to sort the washing up & feed the cats before cooking tea…

- mechanical grabber to help move cat bowls? Check!✅

- friendly human to help move heavy baking trays/reach inaccessible cupboards? Check!✅

#mypainday

Kitchen is sub-optimal. But would cost the earth to refit. This is where privilege of having a partner kicks in again, to help lift stuff etc.

Everyone plans out things like chores/dinner tho, I'm sure it's not just a team crips'n'spoons thing? Maybe? Idk.

#mypainday

Just been thinking "why isn't this oven getting hot?" FORGOT TO TURN IT ON 🙄🙄🙄

That nagging-ness of pain I mentioned earlier? It is a hooooge cognitive load. Must be brainfog o'clock 😂

#mypainday

Sharp pointy sciatic pain where my legs join onto my body, & dull pain where hands & feet start, have joined us for the everything-hurts-evening-entertainment. 🙄

Time for evasive manoeuvres. (Well, ok, painkillers 😂)

#mypainday

Where my hands & feet start? That has a *name* 😐😐... Wrists and stuff?

All that medsci education but I still forget… it's that time of day alright 😂😂😂

#mypainday

But while I'm resting again let's talk meds, incl;

- Being a pharmacologist has its advantages, but I still struggle with a wall of internalised pill-shaming ableism.

- Scientists are human. I'm not immune to having problematic patient-held beliefs

#mypainday

I take 3 things mainly. 1, low dose amitriptyline daily which helps with numbness.

It's better known as part of a group of antidepressants, but at low dose is used for neuropathic pain.

Shitty side effects minimal, weight gain, but meh, it's ok.

#mypainday

2) I take tramadol as needed, which is less often now I'm better at management.

It's *extremely* effective for me… Buuuut pill-shaming stigma attached to this med burns thru all my scientist logic. I leave it longer than I should to get on it during bad patches.

#mypainday

Alternatives like gabapentin had horrendous side effects for me. Just. Gah. Holy crapweasels worst time evs.

When my doc asked if I wanted to try pregabalin I think you coulda heard my NOPE a mile away 😂😂😂

Again, privilege of being a pharm-flavoured sci.

#mypainday

3) I take ibuprofen & yes, my pharm brain tells me daily THAT'S LIKE PISSING ON A BONFIRE!?!

But I had to stop taking naproxen because side effects, meloxicam did fuck all.

So ya know. It provides a little immediate relief when I wake up creaking.

#mypainday

What I'd like you to take from this is

- every patient is different. What works for you may not for me, & finding right meds is a juggling act

- pill-shaming dickweaselry is real problem, & science doesn't protect me from it

- this shit is complicated.

#mypainday

Ok it's about that time where I get less good at spelling 😂 Neck pain is set to burny, & numbness in hands is getting on my wick. Imma sign off for a bit.

Thanks for all the love on this thread btw. Have some more art!

#mypainday