This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Mental Health Week – Chronic Illness

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This week, October 4th to 10th, is Mental Health Week in Australia. This is in the lead up World Mental Health Day on 10th October. What an extraordinary concept this is to think about! Think to yourself how recently the global community, down to local social, sporting and professional groups were reluctant and dismissive of people who were struggling with mental health issues. Reflect on how far we have come as people towards accepting and opening ourselves up to others on such a vulnerable, private and exposed level. That we have a day worldwide, and a week in this country at least, to remove the stigmas surrounding so many mental health concerns shows growth, care and understanding.

The Australian Broadcasting Corporation (ABC) is dedicating their broadcast efforts on television, radio and digital radio all to this cause. As I am sure channels Ten, Nine and Seven would too if they didn’t sell themselves so short with ongoing serials. I haven’t looked into SBS unfortunately.

There are some truly incredible conversations happening on Triple J for young adults in various stages of diagnosed illnesses, unspoken sufferings and coming to terms with what it is like to live with a person suffering or who has taken their own life. Some famous celebrities have shared their stories, panelists have discussed the topics from a range of angles and debated what the focus should be and how the ‘people in power’ should or could be helping more. What I am trying to say is that we are only just getting in the middle of the week and we are already awash with more different angles on the topic than I could have foreseen.

The conversation about mental health has definitely started.

Now I am not shy about sharing my own issues in the area of mental health and well-being and I want to take some time to attend to this very large issue, as it pertains to people who are living with chronic illness, chronic pain or even just struggling with a long-term drug prescription. What I want to talk about is the reasons behind these feelings. I am not a professional in any field related to trying to resolve these issues and so as much as I would love to tell you how to combat it, I cannot. As a strong believer in the power of metacognition (knowing and being aware of how you think about things) I feel with all of my being that we, The People Who Have Had Our Control Taken Away, have the ability to take it back in simply being aware of what we have lost and cognitively taking it back.

When the issue is the change in your lifestyle. The thing with this concept is that everyone goes through this at different times in life and it is for a myriad of reasons. It is hard to describe to others exactly why this is making you feel so darned depressed,  because they will want to say ‘I’ve lost things too’. And it is true. I suppose the deeper reverberations that happen at the core of our soul and in places so much deeper than we ever expected to exist is because we have not done anything to cause these losses. You basically wake one morning to a voice in your head telling you that you don’t have the strength to roll over. This voice will take away your dignity randomly so that you wet yourself in public because bladder control is the more painful of your options. Having a drink at a 6:30pm dinner of anything carbonated, alcoholic or containing natural or added sugars will keep you awake on the toilet until 4am. Do you see how I haven’t even touched on the losses related to exercise, driving, anything with flashing lights and meals that don’t clearly specify the ingredients used. Oh and sleep.  So yes, every person can be fired from a job, hit by a bus, swooped by a magpie, fall down the stairs, marry their best friend or move interstate. Not every person sporadically has to move into a cool, dark, silent room for hours on end until the fire stops burning within their skulls.

When the issue is pain. Pain is such a b@!#%. I hate typing so crudely but how else I am meant to maintain my honesty? Even the medical industry bows down before it in defeat. We are at the most advanced we have ever been with pain, yet the only honest-to-goodness qualifier for the degree of pain we are in is rating it on a scale of 0-10. ZERO here is none and TEN is the point in which you want to die, please Lordy May take my life, hear my thoughts and end it. I genuinely mean thoughts as at this level you cannot assemble clarity enough to speak this. The obscure level of this particular phenomenon is due to the innate nature we handle pain and the extreme sensitivity of each indivdual to pain. To one person a wound may inflict a level 8 pain, and yet to another who is more familiar to injury may only feel it as a 3. I could cite both well-known cases and personal scenarios to enhance my point but I thgink this is not a new topic so I will leave it. The trouble with pain and mental health is the draioning and debilitating manner of it constantly buzzingh in your consciousness. A person who regularly experiences migraines may develop anxiety or worse from their awareness of the extent to which this condityion impacts upon them. Of course, this is only one type of pain, but it would be too much for me to go into other examples. I think you can feel for yourself what it would be like if not to have an ache that is present 90%-100% of your life such as mine (I predict I live at 4-6 as a stable identifier in the scale) that to at least have the knowledge and well-known degree and effect of pain on your mind and body. You cannot ignore it like your shadow.

When the issue is your failing body. Every knows they will die. It is one of those nasty facts that are both unavoidable and undeniable, yet we try as we might to fill every living second with as much things as possible that will take this knowledge from our foremost thoughts. It is painstaking to have the vessel you are progressing through this life in start to falter. If you are unfamiliar with being in a sick body, perhaps you have been in a bus that has broken down? Or a car? Or at a supermarket when the power cuts out? Now you don’t get the bottom-falling-out-of-your-gut-feeling in the way it does when you are on a rollercoaster, but you do lose all sense of existence in every other way. You rush forward and are propelled onwards and the only thing you can do is hold on tight and let off a little bit of steam as your mind goes dizzy and the scenery rushes past. You wonder how you got there, what you did to earn this physical self-retribution and exactly what is holding you to the earth because this betraying vessel doesn’t feel like it used to. Your mind reels and it is hard to have every thought the way you want to, especially the ones that involve your body functions. It is scary and frustrating. Like a roller coaster, once the chain pulls your seat away from the loading dock you are stuck with no choice but to roll through this situation and hope it is over when they said  it would be. By the way my body is not rollercoaster capable and I hold a personal grudge for that.

When the issue is your own mortality. Do you know how much crap we accumulate in this age? Do you know how hard it is to know what is transferrable to others and what isn’t? Because we don’t leave inheritance it seems but passwords, credit card debts and eBooks or iTunes accounts. I buy books in paper because I want to share, loan, write on mine. I save passwords with my folks because not to is irresponsible I feel. Before I had my cranial biopsy I had to share all of that. I lay in a bed in Perth Royal Hospital in a room with three other stroke survivors. One 20 year-old (yo) with chronic uncontrollable epilepsy who wore a helmet, one 16 yo with major heart valve issues to boot and one 80+ yo who had the snoopiest and most inconsiderate guests. Not content with her television until 2am they goggled, peeked at me around my curtain and told what parts of my story they could glean to every other guest that came in (30+ different ones in the brief time I was there). My priority was to utilise the services at my disposal so I would open my heart about my fears of death, brain tumour, never do anything good ever for fear of THE BIG STROKE. They would just watch me blubber and whisper behind the curtain. Not only did I have to face my potentially imminent death and take three days to be okay with dying, saying goodbyes and password details where needed, I had an front row audience. Knowing you will die one day is one thing, being taken out of class and asked to sign a waiver over it are two different things and I don’t think any dose of Prednisolone nor the highest, fastest rollercoaster in the world could be so volatile on my mood swings as that. I honestly think it will take me at least until next year to recover from that.

When the issue is the medication. Wow. Speaking of Prednisolone. Or have you ever been on birth control? Antidepressants aside a little because that is a bit obvious, but ‘calmatives’ moving up to Tricyclic Antidepressants such as Benzodiazepines and other such tricky little pharmaceuticals on the market these days. Please do not think I am being intentionally vague here but I genuinely cannot recall many others at this precise moment. Is anyone else devastated at the level of required prescriptions we chronically ill are taking on the vital necessity of STAYING ALIVE? There was a time as a young lass that I was given a corticosteroid prescription with pages of warnings and advice and pro-active documentation to complement it. It was delivered to me only with the utmost caution and with great consideration. When my illnesses were simple. Now they hit in swarms of three or at a severity that LITERALLY floods my heart with fluid or chokes my brain of blood (angio edema and stroke). They still warn me, I just forget sometimes to adhere to all of the protocol, taking my pills in the morning with breakfast but not watching my mood swings or diet.


 

Now I have covered a fair bit, but not everything. I could actually go on forever but I will not. What I want you to think about is that there are ROOT issues and SURFACE issues. The former are like the ones above and the latter are the stems, is suppose you might call them. I do not think any issue is shallow so do not misread surface as shallow. The surface I refer to is the clearer concerns because sometimes it isn’t always obvious that a lot of our issues are building up from an unidentified or unresolved root issue. 


 

I will tell you myself that I am presently struggling with MORTALITY, MY FAILING BODY and MEDICATION. I am actually going to attempt something I have never done before tomorrow morning and I truly hope they lead to a change. For now though I am tired and broken. I will listen to a podcast from Triple J’s Hack team on ‘Mental As’ Mental Health Week special.

I hope you are supported, as I am.

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

3 thoughts on “Mental Health Week – Chronic Illness

  1. This is a really excellent post. Thank you for sharing.

    Like

  2. Pingback: Manic not Depressive | This Lupus Life

  3. Great post! I too am happy that mental illness is out of the closet these days. I was never ashamed of my depression – it’s a chemical imbalance and hardly my fault – but it’s great how society is catching up to us modern thinkers 🙂

    Like

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