The Lupus Awareness Month Diaries: Day 27

Hope you’re all doing well.
I wish I had something bright and wonderful to say tonight but unfortunately no can do.
I’ve missed some medications lately and I can feel the repercussions of doing so. It’s scary how we rely so much on medications and a slight change can throw everything off.

I’m really looking forward to seeing my rheumatologist on Wednesday. In equal measure I’m anxious. I think I may be going ahead with new treatment as this time last year, I was advised to begin lowering my steroids.
For safety, I was told to drop 1 mg per month and remain at the new dose for a month then repeat. I only managed to drop 2mg but then had a massive relapse so didn’t continue on that plan.

I’m so desperate to live a life without steroids, I can’t describe how incredible that would be. You’ll completely understand this if you’ve been on steroids for a prolonged period. They’ve started to ravage my body and have permanently scarred the outside, but in an emergency, I know that little pill would save my life. Double edge sword personified.

In other news, my mask is definitely slipping.

I’m losing the motivation to care as much as I used to. Before, I’d wear my makeup, throw on some earrings and try to look respectable. Lately, I’m a hot mess. I’ve stopped caring how I look atleast half the time. If I’m going to work, I’ll make a ton of effort and still think I look like crap but atleast I’ve tried.

I’m just too exhausted to care about the little things as I can barely do the essential things. Again, its gone 8pm and I’ve not attempted to make something for dinner. Yesterday, I fell asleep mid conversation during lunch with my mum. Today, I was pulling onto the driveway and literally had to put the handbrake on and rest for a few seconds before straightening the car.

I’m putting myself on a little positivity challenge in November. Nothing grand, just something little and fun. I might take the November photo challenge. Not sure if I’ll instagram it but I think I might post to the Facebook group or Twitter. I’ll post the deets below if you wanna do it too. Tag sickoflupus so we can see how you’re getting on!

Ciao for now


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