Im just gonna write this today because this is something that has been really plaguing my thoughts. I dont know how to start, or where to start rather, but i guess I’ll dive right in by explaining how joint pain works…for me at least. If you’ve ever been hit on the knee or the elbow, can you recall how that felt? It hurts right? But its goes away. Its not major pain, sure you might yelp or yell from the shock of being hit, but the pain itself is bearable. That hurt you temporarily feel is me everyday. It hurts and its bearable but its not completely gone. I like to call this niggling pain.
So, imagine living with that as your baseline symptom and THEN your disease activity gets high. You have your usual niggling pain, but with high disease activity, the pain is taken up a notch at some point later on in the day. For me, its always towards the evenings, closer to bedtime (truly I feel like an old crone). The niggling pain then feels like someone has put a giant clamp on my joints. Its still bearable, but atp you find everything and everyone irritating and then now you cant sleep.
For some of us, we resort to painkillers. Its a last resort of cousre because, on top of having to experience this everyday, pain killers has side effects (for some, no effect at all). On the occasion pain killers are not taken, there’s a very slim chance we will get any rest. And a lack of rest will just make the disease activity flare up even worse. But wait wait waaaaiitt… if we do take painkillers when the pain is high on its nigh (late at night), we are waking up in morning drowsy as hell and now we’re unfit for work because it take about 6-8 hours for painmeds to wear off (im typing this right now under the influence of tramadol lol. On top my joint pains today, I have a flu and everything is just so sore right now I want to crawl into a hole and hope to disintegrate lol)… oh but wait again! painkillers or not, theres a chance the pain will graduate overnight. What had previously felt like clamps on your joints have now become what I imagine cement being poured into your joints. This is what we experience as “joint stiffness” in the morning. This stiffness often wears off later on in the day but maaaan, this is always the worst part of the day for me.
I have to mention, this has become bearable to me I think because ive lived with this for 16 years now. But for those that are undiagnosed or newly diagnosed, I’ve come to learn that they imagine this is actually normal… this alone is a whole other topic but i must try not to digress.
So yes back to the pains, the stiffness eventually wears off during the day and then we’re back to square one. That niggling pain
Mind you, yes, this is what living with lupus means, BUT only when disease activity is high. When disease activity is high, your symptoms get worse. When it is low, there can be little to no symptoms (though symptoms might still rear their head if you’re stressed out or if something triggers the disease.. like sunlight. And theres no avoiding sunlight when you’re living in Fiji).
Ok now, I dont know what my exact plight is in writing this but I guess we’ll get there when we get there lol. Also perhaps maybe I should’ve started with a background of myself. I dont think my disease activity has been this “constant” ever since I moved here to the West. Maybe it could be because there’s so much sunshine here compared to Suva? I definitely, deefffiniiittteeeelllyyy think its 100% because I still have to go to Suva to manage my disease.
You see, in Suva, if I had a little problem, the doctors monitored me closely. They would either admit me, or have me show up for clinic every week, all the while, they’re taking blood tests and adjusting meds until they were “just right”. And by “just right” I mean until I didn’t experience any of my lupus symptoms. The disease would still be there, remember theres no cure for this, but because it has been managed properly with medication it wouldn’t be terrorizing me this much.
But, I am here now in the West. So, when I go see a doctor here for symptoms, they either prescribe painkillers, sleeping pills, anti-depressants, vitamins, basically everything else under the sun instead of ordering blood tests to review my disease activity. Now, im not critiquing them; im jist trying to magnify the need for more specialists, or trained doctors on this disease specifically. ESPECIALLY in the West. Because this is what im going through right now. Some doctors will write me a higher dose of my meds sure, but most of them prefer not to mess with my dosage at all and they tell me to see my doctors in Suva. All in all, and im sorry if ive done a shit job at it, but they DO understand the severity of this disease, they just dont know how to treat it.
Since I’ve resumed employment, I have missed work at least once every single week because my disease activity hasn’t been properly managed. I am always messaging my boss to tell him my joint pains have worsened overnight. I am only soooo lucky that my place of employment is very understanding towards me. So its times like this i often think of others like me that share the same predicament. How on earth are they coping?
The LFF wishes to express our profound thanks to Ms. Matainadroga for her courage and fortitude, in letting us into her world and giving us a glimpse into her travailings. She is a Hero in our eyes. Vinaka vakalevu Lewa! #LFF #MakingLupus Visible #LupusWarriors #LupusFoundationFiji