Summer is always the worst time for me. It is a sombre reminder of my body failing and what Lupus really means for me. I have been living with the active effects of my Systemic Lupus Erythematosus for almost a decade now. For almost half of that the Lupus has been active dually as the Lupus Cerebritis. However, context is needed to solidify my life around these two illnesses. Through this you will be able to understand why the summer brings on this down-heartedness to me. Soon you’ll learn what setbacks lie ahead for me at this point in my life.

a summer sunset

Sensitive

I one of those outdoors people. Existing predominantly inside is a struggle. Soul crushing could be accurate. One of the largest and most onerous afflictions of Lupus, as anyone with the disease will tell you, is the sensitivity to light. Something in the rays from any ultraviolet emitting light source triggers something in the cells of people with any type of Lupus. What a largely vague and wholly average sentence. My housemate Bow laughs at me for my ability to get sunburned watching Bondi Rescue. One year I infamously earned third degree burns on my back for a half hour stint in the sun at 8:30am. Since my diagnosis most of my Lupus symptoms, including the severity of my photosensitivity to an extent, has thankfully been largely controlled by my main ‘Lupus’ medication, Hydroxychloroquine as well as some other immunosuppressant’s. The issue with the aforementioned and all immune suppressing drugs is their inflammation of photosensitivity during consumption.

Oh Australia why do I love thee so? I’m basically up the creek without a paddle. Or sun protection.

Something in my brain

The Lupus Cerebritis eats away a little more at my ability each year. It may appear as though relatively little is happening with it, but I have been advised not to drive, even though I have passed the six month wait period following a seizure. The honest to goodness truth is that I have not been well since that time when I began to feel unwell just before I went on my university teaching practicum. I have a daily bout of light-headedness which in any other person could be brushed away yet for me could be signalling the stress of overexertion that precludes a new seizure. The afternoons are the worst. Most evenings I am tormented with cramping around the region of my temple, if not full blown migraines. The heat, which used to be so welcoming to me, is only a burden. Warmer weather means a slight change in blood pressure and a higher change of losing consciousness. The last time I saw my specialist team of neuroimmunologists I was advised the medication treating my latest inflammation, prednisolone, should be working and they established a plan for slowly lowering this dosage until I saw them and they were able to review my latest cerebral MRI. The issue here is that I did not feel this treatment was working before I saw them and in our time apart I am becoming surer. Each day I stay cloistered at home awaiting the next spell.

I tell myself, Jessie don’t do anything strenuous. Don’t go out alone. Be wary what you eat and where you go unless something sets you off. Stay close to home and keep communications open with your folks and housemate.

I am just getting so bored and lonely. This isolation is as bad as the feelings caused by the worst days on the lesions.

Summer

This is the time of year our great country was made for. The West Coast was designed as a playground of frivolity in nature and summer is the time to play. My paddleboard is gathering dust in the shed. As is the canoe. I doubt my wetsuit would still fit, given the weight gain from the prednisolone. My distance bike is getting rusting on the back patio. My urban shopping bike is gathering dust in the spare room next to my unused yoga mats. My forgotten gym and exercise equipment was in the storage box by the door. Like a decent amount of my belongings, I am designed to be used outside in the summer. I am getting rusty, gathering dust, sitting back and watching everyone around me take advantage of the climate they were born for.

Nowadays I only change into my light cardigans and lighter-fabric long pants, dig out my wide brimmed hats and top up on my sunscreen cream supplies. My outdoor summer activities and hearts desires have been replaced with day-long bouts on the sofa trying to remember if I had seen the next movie recommended for me and working out how to occupy my mind in a productive way without leaving the house or spending money. I have roughly three dozen books ready to be sold now, and notebooks prepare for the next three semesters at university. My university booklists are sorted. My online and computer files are organised. My art projects are progressed and now paused at the point I could reach without spending the money I do not have. I’ve asked my parents if I can loan their dogs to keep me company. Planned catch ups with all the friends possible. All this is done from my living room chairs. And I am bored. I miss the beach, the surf, people, fitting into my shorts and sitting in a dreary lecture revising endless notes. I miss enjoying the summer.

Keep your head above water

Sombre

The feelings of depression that are washing over me are nothing new. The sombre feelings inside me are not foreign nor are they anything I cannot handle. This is not a cry for help so much. It may definitely be an alert. I am nothing if not a good communicator if my current situation. Sometimes I wonder if this is the only way I have kept myself safe for so long. Safe from suffocating in the overwhelming wash of tempest I am caught in which is my life. Wow that sounds dramatic, but I honestly wonder if my life will ever be anything but that. I am so acutely aware now of my need to walk on eggshells so as not to disrupt the tenuous balance I have managed to establish in this life. Anyone who exists in my world, friends, family, acquaintances, may be fooled into thinking I do not know of their contribution to the eggshell dance. I feel as though everyone is so delicately trying to stay away from me, or give me space, or do whatever it is I ask so as not to create a situation in which things get worse. Newcomers may even resent this and for that I am deeply sorry. Sorry they cannot comprehend the strength of the connections I have with everyone else. Sorry they don’t understand the very real need I have for these connections. Sorry they don’t understand, just at all. I did not create this situation and if it were me I would wish it away. I resent my life, so of course they should.

Those are words I don’t think I have said before to you. I want to clarify in quick succession, I am not in a ‘bad’ place. I feel it is healthy to admit that my situation sucks. But each day I wake up, my heart beating, my lungs taking in air. So I will continue to find new things to learn, books to read, songs to sing, food to cook and art to create. I know so many amazing people I will continue to bug them until they all get thoroughly sick of it, regardless of how much they deny that is the case.

Counting my setbacks, counting on the summer and working through this sombreness.