Since my last ‘bad flare day’ entry, things got better, only to worsen.
The previous mighty flare was bad enough to incapacitate me. But it did relent soon enough with the help of my daily diclofenac, pred and paracetamol.
I then attended the closing show- Ungaro A/W- of the Audi Fashion Festival on Thursday night with Sam. As if the previous 80 minute wait wasn’t bad enough to ruin my lower back, this time we too waited for 80 minutes, but I was in Nine West platform heels. Obviously that wasn’t a wise choice. But the show was so much more enjoyable than Berardi’s show on Tuesday. So no grumbles there.
I was rudely awoken from my sleep this morning. Saturday morning. Right. I was pre-empting a major flare judging by the pain that interrupted my sleep. I was hoping it would stop there, but it didn’t. I had, what I would call, the WORST flare of my whole life.
I winced in pain, moaned and groaned aloud, because of the exceedingly excruciating pain in many joints. Shoulders, elbows, wrists, fingers, hips, knees, ankles and what-have-you. Probably cricoarytenoiditis too, because the odynophagia was rather unforgiving. And not forgetting the murdered lower back. I squirmed in my bed, reluctant to get up for breakfast. But I needed to take my meds, so i willed myself up.
It must’ve been a lethal combination of arthritis+stiffness+fatigue. Because it was almost impossible to get out of bed, brush my teeth, walk out of my room, get a hot drink and sit down. My posture was crooked compensating for the lower back pain and the synovitis in the hips, a limping gait, tensed shoulders, flexed elbows, hands hidden in the kangaroo pockets of my hoodie, and head hung so low because of the stiff neck and permanent grimace. It was embarrassing. Utterly embarrassing for a 20 year old girl to be like that.
I had to hold onto the mug of Milo so tightly with both hands, because it was so painful, and it felt like I was going to drop it. Then when I finally sat down, it was such a painful chore taking my medications and drinking Milo- it was simply impossible to put anything from my hand to my mouth. I had to use a straw because the mug was just too heavy for my inflamed joints to bear.
Hobbling very slowly back into my room, I was embarrassed, even ashamed, of having to appear like that. I must’ve been such a sight- being akin to a centenarian in a youth’s body, needing help for simple tasks, feeling defeated by the disease, and seemingly seeking attention. I was in a way, resentful of what RA did to me. And I couldn’t understand why I was unable to grit and bear with it, like all the other times. Was I inherently weak?
Rest, a hot shower, 10mg of pred, 150mg of diclofenac, lotsa paracetamol and a long while later, my pain score has dropped from a 7 to a 3. Of course I’d like to spam a little more on pred to make me pain-free, but I cannot compromise my weight for that. Silly? Maybe.
I’m just hoping that my flares in future will never be any worst than today’s, because honestly, dying seemed more comforting than having to endure with the pain. And by the looks of it, I’m really just hoping that these flares are not a sign of a deterioration of my joints or the control we have over the disease activity.
I need biologics, seriously. Oh and I haven’t been finding time to fret about my liver. Let it be, I guess.
Although I try to tell myself not to worry about the rheumy appointment, I can’t help but think about how futile everything will be in the end. And how I’ll never be able to break free from RA’s vicious cycle, and end my 3+ years wait for biologics.
I just want to be okay.
Is that too much to ask for?
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