Well, hello friends I have returned. But, you may ask, where did I go? Where did my Lupus take me? Why did I leave you and what does this mean? To answer this, I must break my life down into the segments that have had the most impact on me. They are not really chronological, as many span years and overlap or intertwine. To be honest, I am still making sense of much of what happened so I hope you can forgive the scattered approach I take. It is fair to say, though, that I am not ‘there yet’, but still on ‘my way’ and so too is my writing. I hope this makes sense.

do your feet tell the story of you and your life?

A Holiday to Lake Grace and Albany

For the larger part, I have been well. Physically, my Systemic Lupus Erythematosus is still mostly in remission. In June and July I relapsed, as I took a holiday down to the southern-most point of Western Australia in Albany. Growing up in Lake Grace in Western Australia’s Great Southern Wheatbelt, and with much of my family living in this southern coastal town, Albany has been a place I have spent much of my life. The drive from Lake Grace to Albany is between 2 and 3 hours, which is considered ‘close’. It was ‘nothing’ to nip off for a day trip, burger run, or weekend away to Albany. But we were no fools. It is horrifically cold, receiving the offshore winds straight from Antarctica and being a rocky drop opening straight onto this ocean affront. The winds even managed to reach Lake Grace in Summer, bringing the cool afternoon breezes we would need. You can see I think of it fondly. And with a very good friend living there, I thought nothing of visiting for a week in my university holidays to spend time with him and see my family.

When I say I ‘thought nothing’ I genuinely didn’t think about the ramifications of going to such a cold and climactically confronting part of the country with my illness. Even the few days before in Lake Grace had been torturous to the point that the night before leaving I told my parents jokingly “It is so cold here [Lake Grace] I think I may die in Albany.” Needless to say, I froze, my asthma became miserably inconvenient, my transportation and financial situation compressed on top of this to cause me so much stress I barely slept and the only saving grace was just how incredibly relaxing and delightful it was to spend a week hanging out ‘carefree’ with one of my long-time friends.

My return to Lake Grace saw a miserable me collapse on the sofa with my parent’s dogs begging for excessive attention. I wanted a warm bath, all my clothes were soggy and damp, needing a wash, Gingivitis riddled my mouth, a yeast infection riddled my mouth and stomach, Lupus…well riddled my body in relapse. Solid foods were out of the question, even bananas and porridge made my gums bleed. I borrowed clothes off my mum while mine were washed and drank lots of tea.

Up the side of a mountain

I had an ulterior motive for my trip to Albany. On the way down from Lake Grace, one must pass through the Porongurups, a mountain range in Stirling Range National Park. The largest mountain in this range is Bluff Knoll, sitting at 1 099 metres high. I thought nothing (again genuinely didn’t think) of climbing it, even when I spent time in Albany becoming more and more sore, tired and miserable. My friend and I made our plans, set the date and organised our packs. Then…we climbed it. Of course, you will hear alllllllll about that but not right now. Now I am just catching you up. I did it. That something epic and special and oh so wonderful. Yes, you will see the videos and photos, but not now. Now I will tell you why I left.

I had a break down

Mentally I was not well. Physically at the start of the year I was becoming well and yet my body imploded upwards into my brain and melt down ensued. It began with a domino effect of death. To date this year there has been a significant amount of unexpected death in my ‘sphere’. I can handle death and I can cope with this alone, but being well the implication death had on me was to trigger a subconscious reflection. I may or may not have spoken about the separation I have recognised between the ‘Pre-Illness Me’ and the ‘Present Me’. Separation of self, as such, in terms of a recognition that the ‘old me’ is gone, has died. Now that I felt and was seemingly becoming well again it was as if the person I should be had died years ago. I could not recall a time of existing that did not involve being ‘that girl with lesions in her brain who would go to hospital once a month’. I was ‘born’ as a woman in her late twenties with a vague notion of what I believed in but no real clue what my role on this planet was and what any of ‘it’ meant. The domino of death had brought my subconscious to the fore and triggered a sense of internal ‘self-death’. I was shattered and it was messy. There will be more about this later too, don’t worry.

I have new doctors now

Not instead of the old ones, but as well as them. Am I not super lucky! I am seeing a psychologist regularly. I am about to start seeing a psychiatrist(!) as well. My GP doctor went on leave, and I had to see a different one, hand-picked apparently (!), in the interim. She insists I go to her every third week “Because I know what it’s like for people like you and you spend so much of your time looking after yourself and other people, but you need someone looking after you.” By George, what a brilliant lady. Her husband has a chronic invisible illness so she knows what she I on about. I cannot say how much these appointments have helped and seeing her regularly has been a blessing to me and my family. My specialist team at RPH is concerned at the severity of my ‘clinic depression’ despite seeing a psychologist and being on antidepressants. They are going to make some changes…

My medications are changing

By November I will be off steroids.  Have made a stand and said that from now on I will ‘refuse treatment if they try to put me on them, and since I have begun transitioning down from 10-5mg I have noticed significant improvements. When I am completely off that medication I will begin to transition off my antidepressant and onto another. In the meantime, I am taking a mood stabiliser that helps with sleep. More on this later too (gosh so much to catch you up on!!)

I think that is it. Everything else you will read about I am sure, but for now, just know that I am getting better and wish you well.

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