Monday, September 28, 2015

Invisible illness week...

I did not make it to the store today, which means a) I cannot see if a lower watt bulb would make my neighbor any less furious with me and b) no curry-making for me.  I had planned to go after my appointment, but I am so weary and I have milk.  The latter sealed my grocery-shopping fate.  Maybe later in the week.  Maybe when it is cooler (Thursday/Friday).

I find it ... interesting ... that the new counselor has learned more about dysautonomia in two weeks than anyone in my personal life knows.  She has researched both personal stories and medical sites.  She also asked for a list of all of my medications and planned to look each one of them up to see how I might be affected by them.  Her response to what I learned was how devastating having dysautonmia must be, having such a profound impact on quality of life and the constant cycle of grief for the things you are losing.  Again, she said that it is clear to her that my pretending about being better than I am is not just for others, but for me, too.

I find that ... disconcerting ... to ponder.

This is Invisible Illness Week!  Bloggers are encouraged to write about their fight against invisible illness, particular the battle(s) others do not see.  I am inspired to write, but then again feel so overwhelmed at how scattered I have become.  Maybe before the end of the week....

From that website, I learned about a really cool book:  Beyond Casseroles 502 Ways to Encourage an You can order a copy here.  Or you can get the Kindle version.  Or you can read an excerpt of 52 ways to encourage the chronically ill.

Dysautonomia Awareness Month is October.  Illinois just acknowledged (proclaimed) that.  I wonder how that happened.  I think, too, Wisconsin has joined in on the campaign.  I find that staggering, given just how few even in the medical community know what Dysautonmia is.

This really cracked me up!

I like this one because it emphasizes the vagaries of life with dysautonomia and how folk might look fine, but actually are most decidedly not fine.

The counselor said that it was normal, my longing for my life to be understood and the efforts I am making to manage my illness acknowledged, but she said that unless folk when to the effort she did, they would not understand if they did not have dysautonomia themselves.  I replied that I wish I had cancer ... so explanations wouldn't be necessary.

I feel as if my life is so infernally small:  illness, budgeting, cooking, Amos.  And that most of my life is not ... well ... anything of interest.  I was thinking about how my neighbor, who until recently was the most frequent human contact in my life, asked me not to talk about budgeting or cooking or illness.  Flat out.  Topics not to be discussed.  Boring were her words.  Despite the restriction, being lonely, I would invite her over for a drink after work and then mostly listen to her life, which is all about custodial work.  I find myself not all that interested in copious amounts of industrial cleaning knowledge.  Can I blame her for not wanting to hear about cooking or budgeting or dysautonomia?

I suppose I am trying to say that I do not feel heard and being heard is important to me given what I am facing.   [Or maybe say what I am trying not to face???]  Day in and day out.

It was a big step for me, today, to concede that getting up and getting dressed and going out and talking was enough for me.  Shopping needs to be on another day.  And not two outings two days in a row.

Which brings me back to needing support.  The nearest support group is in Nevada or Maryland.  I think Maryland might be closer. I did not Google it.  The point is that there is not even one in the whole of Indiana or the mid-west.  This gives rise to thoughts of Facebook again. I do NOT want to be on there, for all the negatives that crushed me.  However, there are several dysautonomia support groups on Facebook where no explanations are needed.  And where it would be acknowledged that getting up and putting on clothing is applauded as the achievement it is.  Gosh, for that matter, the fact that I showered last night would be cause for celebratory adulation.

Living with chronic illness causes you to value the efforts of cheerleaders.  SIGH.

I found one of Michelle's articles that mirrors stuff from her blog, but written so beautifully.  It is from a journal in April 2015:  Sucker Punched:  Ducking and Weaving through the Grief of Chronic Illness.

Earlier this year I had a ceremonial burning. I dragged my body up the steep stairs to our study. No mean feat when your muscles are wasted and weak, and your blood pressure has a fondness for dropping at the most inconvenient of times. I went through my folders and my filing cabinets. Thesis, work documents, neurology articles and course work, were shredded with ruthless efficiency as I sat on the floor. I filled up grey Woolies bags by the dozen. Some, I binned. The rest, I burned. A large bonfire out back. Carbon footprint aside, it was incredibly satisfying watching the ashen motes of paper rise up on the hot air and disappear – a moment of reprieve. Of loss conquered. Or so I told myself. But loss and grief don’t work that way. Not when you live with chronic illness.

‘No one expects the Spanish Inquisition,’ or that, at thirty-three, they’ll develop a serious and debilitating chronic illness. Sure, I expected that I might finally be beyond getting carded at clubs. That maybe Supre was no longer a shopping option and even that silver eye shadow may make me look more mutton than lamb. But not that my dodgy genes would kick in and my body would forget how to stand. And yet, somewhere between doing a presentation to the ethics committee at a major Melbourne hospital, and lying, covered in electrodes while a neurologist I once worked with asked me about my bowels, I transitioned quite spectacularly from professional to patient.

In 2006 my body broke and it has continued to break. I have a vague diagnosis few have heard of, Dysautonomia, to pin it on. A contrary, unpredictable disorder where the most basic of body systems fail or malfunction. And suddenly the world of work, doctorate, and the odd sav blanc with a girlfriend, has been replaced with pill boxes and offering the universe my first born if it can stop me passing out in the rancid loo of yet another 7-Eleven. To quote a naff, but very catchy, 80s novelty song, ‘It’s life, Jim, but not as we know it,’ and I’m still trying to navigate a path.

Six years since I walked out of work for the last time and the grieving process continues. For work. For study. For possibilities. I’m grieving me. Or at least the picture of me to which it would seem I was very attached. Whether that old me ever existed or is the fictional construct of rose-coloured glasses and a frequently blood-starved brain, I grieve her all the same. I grieve the loss of choice. I grieve the loss of function. I grieve the pieces of me that progressive disability and illness have torn away. Devoured piece by piece, day by day and year by year. Big and small, I am consumed by my own body. And just when I get a handle on things, another loss occurs. And suddenly the fact that I can no longer vacuum my house is a cause for tears. Choice is perhaps the biggest loss and my dog-hair covered floor both mocks and reminds me of that loss.

I tell myself that I am okay with the changes that illness has brought to my life over the past eight years. And when I say brought I mean, beaten me over the head with or sucker punched me at every opportunity. Progressive chronic illness takes mercilessly and indiscriminately. Every time I find my even keel I am hit once more with loss, big and small. When I realise I can no longer do something I could do a week beforehand. When I find a piece of my before life. When I am once more reminded that I am different. That the me I thought I was and was going to be is long gone. Michelle 2.0 looks vaguely like version one, although I’m pretty sure version one would most likely mock version 2.0’s now bright blue hair and prodigious mouth breathing abilities.

I used to be a psychologist, but that is a lifetime ago. A lifetime that, today, seems completely foreign. Like something I read in a book sometime. Or a late night movie that I was watching but only half-awake, so I am left with nothing but half-formed snippets, that don’t quite make a whole.


My memory is not great. I struggle to recall day-to-day, but in some ways the long-term forgetfulness worries me most. I remember walking along the ward corridors. The hustle and bustle of over-worked nursing staff. Blue clad physios bent over our elderly patients gently lifting limbs and murmuring words of encouragement. I recall sitting at a patient’s bedside holding her hand as she cried, distraught, wondering why her husband, long-passed, had not visited. I remember the little room at the front of the ward where we’d take patients and their families to deliver bad news. I remember the look on the faces of adult children forced to make the tough decision to send their parent to a nursing home. The smell of Avagard in its pink bottles dotting every room and every corridor. The less savoury smells of patients no longer in control of the most basic of bodily functions. The beeping and the buzzing. But it is all snippets. Faces and events merge into one another. I am left with nothing more than a jumbled montage to represent that period of my life.

There is a special grief in losing the particulars of those memories. I was working in a new hospital on the edge of the city sprawl when illness first came calling. A growth corridor as they like to call it. And grow it has. I drive past now and the open windy paddocks that surrounded are filled with building after building. Concrete, glass and steel. I can hardly see the hospital from the road. It is as half-glimpsed in real life as my time there in my memory.

So much of me was wrapped up in that job. I defined myself by the label on my ID card and so did those around me. It was on my cards and my stickers. It was reflected in the books on my shelf. The large pull-apart brain model I used to explain the infinite varieties of strokes, tumours and dementias. The large posters on the wall of my office showing the same collection of disorders and injuries and the handouts I’d prepared for patients and families. It was on my shelves at home and my green bag that carried my life from home to work and back again. It was the shorthand means of communication at parties, even though Neuropsychologist usually leant itself to blank or confused stares. It’s not the most common of professions.

I was one of the lucky ones. One of the few who end up working in a job they love. And still I lie here today having forgotten the details of my time there. It’s like looking through a car window on a rainy night – everything is distorted and half-formed. You know the splodge of yellow light above your eye line is a streetlight and the two red lights in front a car, but only through interpretation and deduction, not because of clarity. The survival mode in which I was functioning that last year at work seems to have been little beyond a ruthless practicality. Identify task. Complete. Drop. Move on. No time for reflection or integration. And as a result, I am left with a time more flickering mirage than reality. Not living but existing. And lost time is all I really have to show for working myself into the ground in an attempt to cling onto a life I was no longer capable of living.


Slowly I have been unpacking that part of my life. First it was my work bag. Then my files. My text books are packed away in the cardboard box wasteland that is the garage. My awards and certificates are packed away somewhere. The fact I no longer care as to their location, a huge step. But I still have my professional membership cards, a handful of business cards and most of my work clothes. Slowly I am peeling off the layers. Slowly I am letting that part of me go.

A few days ago I sat on the floor of my walk-in wardrobe and started sorting through my work shirts. Our combined marital hoarding tendencies make it a cramped little space, but I like that. Where normally I am claustrophobic to the extreme, that little room, filled with the bits and bobs of our life, is somehow comforting. I was holding a red long-sleeved shirt in my lap and I felt an unexpected visceral hit. It’s an unremarkable shirt other than being my favourite colour. Just a small variation of every other work shirt I still own. A mass-produced cotton and elastane blend. And yet I found myself rubbing my fingers over the fabric with a building sadness and longing. I don’t recall any specific instance when I wore it. It is remarkable in its ordinariness. But it triggered the feeling of loss nonetheless.

A small part of me still thinks, maybe. Maybe one day I could return. I have visions of myself St George-style, slaying the dragon. I’ll ride back in through those sliding glass doors on my magnificent stallion, the Dysautonomia beast slain, its bloody head hanging from my clenched fist. But it is not to be. My rational mind laughs, knowing I am no longer mentally or physically capable. It also reminds me that I am allergic to horses and perhaps should watch fewer episodes of Game of Thrones. But the maybe persists. It would seem I’m still working on that part of my life.


Acceptance is found in pieces, disjointed pieces. I’d love it to be a clean, formulaic one-hour television episode. I’d like to believe that lie. But grief jumps up and grabs you when you least expect. Denial, bargaining, anger, depression and acceptance. Grief knows nothing about the artificial stages we impose upon it. And grief where the initiating event is never over, takes pleasure in mocking the neat lineal path set out in my old textbooks. Instead it’s more: Step 1 anger, Step 2 sadness, Step 3 pissed off, Step 4 really pissed off, Step 5 denial, Step 6 immerse yourself in Bold and the Beautiful (denial in any other language), Step 7 bargaining, Step 8 depression, Step 9 chocolate binging… and so on. It’s a messy process and it’s even messier when there is no finality to the loss, no end to the episode.

The time that came before illness is as much a part of me as the now. It has formed me in ways I can both acknowledge and have yet to discover. I miss that time. I grieve it even now. I will no doubt grieve it in the future. The grief is far less than when I first sat crying on my couch while the social worker from the local outpatient rehabilitation centre sat opposite deciphering my sob-obscured mutterings. But while muted, it is still there.

So I’ll hang onto those shirts until the time when I am ready to let them go. When I no longer need them, and they serve no purpose. For now they can sit there in the jumbled pile I shoved onto the shelf. To be ignored until the next time I think I’m ready. I’m pretty fond of that grieving stage known as denial. I think in this case, we’ll just hang out for a while yet.  ~Michelle Roger

I found myself weeping and nodding my head at the same time.  She gets it.  I envy her the community she's found in struggling with chronic illness.  And I am thankful for the effort she makes as a writer so that I can see my life elsewhere.  So that I can know that I am not alone.

Through the article I discovered Michelle is on Twitter (@RustyHoe) and through Twitter, found two more dysautonomia feeds I would like to follow and, subsequently, was reminded about groups on Facebook, such as POTS, where I would be one of the crowd.

Dare I try being on there again???

It was strange, but I was so incredibly hungry late last night/early this morning.  Theophylline takes away your appetite, so feeling strong physical hunger is so unusual for me.  Maybe it was just nerves and not actual hunger.  Around 2:00 AM, I gave in and ate the meal I had thawed out for today, my black-eyed peas medley.  I also had one of the blue cornmeal muffins.  I have found a recipe for sweet corn muffins that I would like to try.  I thought for sure that I would like it better than my first recipe. However, the non-sweet, nutty, bold blue cornmeal muffins that I made were such a perfect compliment to the black-eyed peas.  I think I was a bit surprised by how much I enjoyed the muffin.  I still plan on, however, trying the sweet version.  Soon.  If ever I work up the energy to fetch groceries.

Symphony is this Saturday.
I wonder if I will make it.

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