Setting goals with Lupus
When I collapsed in the university library on May 17, I was thunderstruck. To be functioning at a normal rate, and then wake up a day later with little memory and not be able to think coherently is scary. It made me feel sick in a whole different way. I felt as though I had lost a part of myself. I did not regain full cognizance for a week after the seizure.
My collapse occurred at approximately 11 am on May 17 2016. It began as a partial focal seizure, instigated by vasovagal syncope. This means my blood pooled in the lower portion of my body, leaving me with low blood pressure and little blood in my brain. I lost consciousness temporarily and when I regained it my awareness did not come back with it. An ambulance took me from university to Fiona Stanley Hospital within half an hour. I was in the emergency room (conscious apparently) for most of the afternoon.
During this time I had a Tonic Clonic Seizure (Grand Mal if you are familiar with epilepsy). When my condition had been stabilised for a few hours I was admitted to a ward and slept until dinner.
The progression of the Partial Focal Seizure into a Tonic Clonic Seizure. This involves uncontrolled convulsions, due to the epilepsy I have from the largest lesion and brain surgery from August last year. It was unexpected but unsurprising. It just means I will need a new Medic Alert bracelet and safety card with my updated details and a simple conversation with friends and family.
Back to the story…
From the time of the onset of the episode I have no recollection until late on May 18. My mind had blurred to a point at which I became unable to focus and think about myself and past or present events. It would have been easier for me to try to make sense of a kaleidoscope through cataracts with cotton wool half way through the tube.
At this point in time I was scared.
Slowly over the next few days and weeks the brief episode and the events it led to started to change me. I changed. My episode had once again made me see how weak I am, how quickly things change, how little control I have over my life. In a more shocking way than ever before, I had been led to the edge and made to face my mortality. Granted, I was not a stranger to thinking in this way. I had needed to face this issue only last year with the surgery looming and the very real consequences of this. This time it felt more acute and delicate for the simple reason that I was not prepared.
The wisest piece of advice I can impart from living with this (these) illness (es) is the only thing you can do is to be ready for anything. D not to worry if life doesn’t happen how you want it to, in the time you want to.
I knew I was lucky.
I knew life was delicate. I knew I could not really control anything, just do my best, be a good person and hope it all worked out. Yet brushing so close once more, without any preparation, was different. Things were taken from me once again and I realised I had made a great basket to live in. It was hard and open, unlike a cage, but was a great place to keep myself away from the world in nonetheless. I was hiding. I was making excuses. I was sitting back and thinking wistfully of the girl I once was and the goals I once held but it was me that was holding back.
Did you know that when I was 14 years old I registered, undertook and completed a swim called the Rottnest Channel Swim? To be clear, I did it in daily (morning) intervals in my local swimming pool over the course of one summer. The distance is approximately 20 kilometres and is a swim across the ocean channel separating the Island of Rottnest from mainland Western Australian, leaving from Cottesloe Beach in the Central Perth. I have not been able to accomplish any feat near as great since then, but the urge has been on my mind. Indeed if I was physically able, I would always have liked to train for and complete an Iron Man competition. The one in Busselton is one of the flattest terrains and least torrential surfs in the world, so that is a handy coincidence, but still not for me.
Setting new goals
To overcome, or replace, the ‘loss’ of this Iron Man competition I have been musing for well over a year about new life goals. This goal I have anticipated is now a viable target to work towards and so I will begin training at once. One of these goals is walking the Bibbulmun Track. This is a 1300 kilometer walking trail running through the Western Australian bush from Kalamunda, near Perth, to Albany in the South West. I am realistic and aware my capabilities do not enable me to complete this trail in one passage.
That is a journey which typically lasts 6-8 weeks for moderate to experienced walkers. I am a moderate walker, given my familiarity with the exercise from not driving. Yet to assume I am physically at the standard of a moderate hiker is foolish. I anticipate the trek will be best undertaken in daily walks of 10-20 kilometres and my best chance is to take the broken down components of town-to-town or car access point-to-car access point. Given this is Australia, the time of year is a vast contributor to when accessibility is appropriate and wise. Thus December to March may be unviable. Given my study commitments, February and June to September are also out of the question. As well as week days from March to June.
So what do you think?
To walk the track with guides is costly. I will need companions to accompany me, however, preferably someone with First Aid and a compatible level of fitness. Making plans and setting goals when you have an unpredictable illness such as I do, can cause issues. It is time for me to make attempts to decide whether I want to step up. Do I push the boundaries? Take back some semblance of my life as I knew it to be four years ago.
What do you think?
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