What (TF) is lupus?

Happy October! It’s Lupus Awareness Month and as my body decided to have a super fun flare to give me fun things to compla- I mean, raise awareness about - I took to Facebook complete with hashtags. Some of you may have followed along at the time, but for those of you that didn’t, I’ve collated all my ‘dear Facebook” updates for you into this master post…


1st October: MIGRAINE TIMES


I have a migraine brewing, and I can’t take my usual meds because they don’t go with my new meds. I’m at that stage of pain behind one eye, my limbs don’t feel like they belong to me, but I can still see OK… for now.




4th October: WHY.


The four day migraine is done - hooray! Today’s big ouch is knee bursitis. Bursitis is when your joints become painful, tender and swollen. It happens when the fluid-filled sacs (bursa) that cushion your joints become inflamed.


You might have bursitis if one of your joints is: - painful – usually a dull, achy pain - tender or warm - swollen or red - more painful when you move it or press on it


It pretty much sucks. I’ve done icing it, heating it, taking the strong drugs (that mess my stomach right up), strapping it with sports tape - the works. I mostly just don’t want knees today.


7th October: ULCERS ARE THE WORST!


We all hate mouth ulcers, right? Little spikes of pain in our mouth just because bodies are weird.


I have had at least one ulcer in my mouth every day since about mid 2014. My record is 12 at once. Today I have five, one about the exact size of a bingo dabber’s dot. I don’t actually remember what it feels like to have an ulcer free mouth at this point.


Lupus has another fun ulcer surprise in store though - nasal ulcers. It’s exactly like it sounds. I’m just on the mend from two particularly sucky ones, and you don’t realise how much your nose is touched until those touches hurt. Having a cold at the same time is 0/10 do not recommend.


10th October: FATIGUE


I’m tired. Really, who isn’t tired? We’re all tired, right?! That’s adulthood...?


The flare is now in week two, loads of fun new symptoms, but what’s kicking my ass is the fatigue. I’m talking “who filled my bones with lead this body is HEAVY”. People use the “spoon theory” to talk about energy management in chronic illness, where spoons are a basic unit of energy. Some tasks take more spoons than others to do, and spoons don’t replenish in a predictable pattern. https://en.m.wikipedia.org/wiki/Spoon_theory


This week, notable spoon shortages have been:

🥄when I cooked food I then didn’t have the energy to eat

🥄falling asleep at 10.30am because I sat still for too long

🥄only doing one eye of makeup then giving up

🥄wearing increasingly stranger clothes combos because laundry just isn’t happening

🥄abandoning working on marketing my businesses (for the day) because I couldn’t make the words go

🥄forgetting the name of one of my favourite humans, so I had to describe them to Mel in random facts so she could tell me who they were




17th October: SEND HELP


The flare continues... I worked with someone this morning (who I used to work with in the way back when) and she said how good I’m looking. It shocked me because I was in a lot of pain. My hip decided to swell up last night and my partner Mel ended up sticking it back together with even more sports tape.


I gave my pain a quick rate on the scale I use - it was around a 6. Doesn’t sound too bad, I thought...


“ 6 = intense pain. A strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think unclearly. At this point, you begin to have trouble holding a job or maintaining social relationships. Comparable to a non-migraine headache with several bee stings, or bad back pain.”


I’ve been at a 6 or higher for three weeks now.

When I got home, Mel was in the study doing Camera Stuff (the official photography term!) and took the photo on the right - after a 6.25 hour workday at a 6 on the pain scale.


What I’m trying to say is that I’m not THAT much sicker than normal. A six to my usual four. To look at me, you couldn’t tell I am flaring. I’m posting this unvarnished glimpse into my lupie life, not to worry people - I want to give an honest account of what life with lupus is actually like under the surface.


(Also shout out to Mac cosmetics for my new concealer - it hides dark fatigue eyes brilliantly!)


31st October: MADE IT


Phew.


If what you’ve read resonates with you, here are two easy steps you can take today:

 

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