My most recent appointment to the Neuroimmunology team at Royal Perth Hospital over a month ago was positive. I was told the Rituximab infusion was still working, so my B-cells, which fight foreign invaders, was low. I was told my eyesight was not impaired by either the Cerebral Vasculitis or the Hydroxychloroquine (Plaquenil) used to treat my Systemic Lupus Erythematosus (SLE or Lupus). Lastly I was told I was allowed to drive once more and could begin to reduce some of my medications.
So what have I been doing since then?
Category Archives: Systemic Lupus Erhytematosus
What we want you to know about us
I’m going to talk about myself today as usual but I am also going to talk about something that happens with all chronic illness patients and so that if you are a family member or loved one you can better understand.
Another week
It breaks my heart that I have fallen into a lull. These past few days have been a time of internal reflection. It is hard to maintain the same level of oomph, and I am not yet at a stage, mentally, of being able to plan ahead. Even if I was, how do I plan for a relapse, no matter how big or small?
How do you handle your times of relapse? Do you recognise it when it is occurring? For me, the big indicator is always the lowering of energy. I don’t have any specific pain but my body is a general stiffness. My moods are less stable and more prone to happy and reserved, reflective. It is harder to focus and easier to listen to music. I can do things, but they are more along the lines of what can be achieved without mental specificity or hard work.
I know I should do…something. I want to…I suppose…but so long as no effort is required. At the same time I buzz with anticipation of I don’t know what. Am I about to start crying? Or laughing? I definitely won’t talk your head off. But I want to sing at the top of my lungs, perhaps something by Sia or Regina Spektor.
I am not depressed. I am not even unhappy. I am just Lupus. I had a big day yesterday, followed by a night where my heart ruled my thoughts and refused to let sleep enter my bedroom. Everything was worth it. But sometimes I ask why I have to pay for a day of laughter and joy, when so few other people do? It won’t stop me, but in the meantime it won’t help either.
This Lupus Life 