Highs and Lows

I almost called this post ‘It never rains, it pours.’ It feels a bit like that. This morning is already the longest I have spent looking at a computer screen in several weeks and I’ve only written two sentences. Even when I am sitting here with boxes and folders of notes and documents all collated for my Letby book, something I think about every day and desperately want to finish, you cannot imagine how hard it is to look at a screen that looks like this five or six days a week...

Especially when you need the backlight bright to see the text but that same backlight is absolute agony on your eyes.

The embarrassment of having my thirteen-year-old read my emails and texts to me cannot be understated. It brings tears to my, now very dysfunctional, ‘working’ eye.

And don’t get me started on watching TV. I can barely stand to be in the same room as a normal television, but even using a short-throw large-format laser projector that casts a picture as large as my lounge room wall (and by virtue of being short-throw, the light projection is toward the wall and thus, directed away from me and much easier on my eye) my view most days is some version of this...

And the headaches... Have you ever tried to force your eyes to focus on something that is so incredibly out of focus? Especially when everyone tells you it isn’t your eye that is causing the problem?

Yup. I have blown through several hundred dollars a week that I don’t have to be told everything that the problem isn’t. But nobody has any clue at all what the only useful piece of information might be... what the problem IS.

Those of you who have read my earlier posts will recall that I was having issues back in March that I thought were due to the strange additives in what is supposed to be normal sterile saline sold in Australian chemists. Sadly, that wasn’t it. Eventually, when the issue kept getting worse, I went to the GP. Given I only have sight in one eye, the GP to his credit tried to refer me to the on-call ophthalmology (eye surgeon) consultant at the main hospital. But that consultant is, I later found out, famous around these parts for literally being incommunicado. And unlocatable. His practice is from a glass office in a sea of similar small glass offices in a building across the road from the hospital. Except he is never there. Neither is anyone else. I have been shown his advertisements to employ an office girl Friday to be combination receptionist and practice manager. He had been running it for a while and the receptionists I spoke to at the other eye clinic think anyone working for that particular consultant would have to be something short of straight up mad. I don’t think they like him, but I can’t put my finger on quite what it is that gives me that impression...

Needless to say, I had to be referred to someone else. So, I was referred to what I was told was the next most senior ophthalmology consultant in town. Thus far, being referred to her has worked a treat...

Each time I go to her and her husband’s clinic I am foisted off to and have to start all over again with whichever blow-in, be it a locum from Sydney or a soon-to-graduate or recently-graduated doctor. Each time they charge me a fee that claims I saw the practice-owning senior consultant I was referred to, many hundreds of dollars, and it is her name on the one external test that was ordered... except that I have only seen her as a blurry visage preparing other patients who are not me in a consulting room in the back corner office of her large multi-room practice so that her husband can come in and, as best as I could tell, inject pharmaceutical concoctions directly into their eye balls.

Ouch! Just thinking about that gives me the wiggins!

The first of her students/new graduates/locums told me any vision problems I was experiencing were not being caused by inflammation in my right eye, because there categorically was no inflammation to be found in that eye. This was proven to be wrong the following morning and not even twenty hours later, when two optometrists with undergraduate degrees in vision science and masters degrees in optometry looked at the same eye and agreed they could both see posterior uveitis - inflammation affecting the retina or choroid of the eye that can most certainly cause, you guessed it, vision loss and visual field changes. I was immediately prescribed prednisone (a synthetic medicinal form of the hormone cortisol, sometimes known as cortisone). Prednisone is one of the stronger anti-inflammatory medications. I was told to put these drops into my eye hourly for the first day or two, then four times a day for a week, three times a day for the next week, twice a day for the next week, and finally once a day for the final week. To my relief, and for two or three days, this seemed to be making things better. Except my relief was short-lived. On the evening of the third day, and after I had started the ‘four times a day for a week’ part of the protocol, the blurry vision, diplopia and triplopia (double and triple vision), photophobia (pain from and aversion to bright lights), and a ghastly headache above and behind my right eye recommenced. Aggressively so.

Back to the drawing board.

While the first chap at the ophthalmologist’s clinic had told me to frequently use lubricating eye drops in my right eye, the second chap whose name I could not tell you because he wrote the name of the consultant lady I had been referred to on everything he did (leading me to think he might have been a final placement student who didn’t have prescribing or ordering rights) told me that they wouldn’t work and I could stop doing it. The first chap had told me to massage the growing lump in the centre of my upper eyelid, a swollen meibomian gland, while the second told me not to touch it. At all. For any reason. In fact, by the end of the second appointment the only thing the two seemed to agree on was wetting a washer with hot water and using it as a warm compress on my eye. The second even tried to suggest prescription glasses against the fact that as I had said to the GP (and the GP repeated in his referral), and as was recorded by the first chap, my vision was changing daily.

Some days I have clear distance vision but cannot focus on anything right in front of me (within, say, three feet). Other days I will have excellent near-sighted acuity but anything outside of three feet is a blur and jumble of multiple displaced images (diplopia and triplopia). Some days I can put on a pair of +0.75, +1.00, or +1.50 specs, you know... those cheap ones on the stand at the local pharmacy, and I can then force near things into a sort-of focus. Other days none of the three pairs of these specs that have become fixtures on my desk and side table do anything at all to help. On the worst days I cannot focus on anything - near or far. How do you prescribe a single pair of glasses to accommodate for such a moving feast? I have had to stop reading (I haven’t read a book now for almost four months, yet before that I used to read constantly), driving, and a whole lot of other things. Primarily because I either can’t see with sufficient acuity to do them, or I don’t feel safe doing them. I have become a house hermit because I got sick of trying to do things like read the labels or prices on things in the supermarket and having people stare at me. But I digress.

The one thing the second chap at the ophthalmology specialist’s clinic did was to order an MRI of my eye anatomy, optic nerves, brain and upper neck - looking for any obvious change that might explain the rapidly deteriorating vision and headaches. The result? Nada. Apparently, nothing looks out of place. At which point I am now, for want of a better word, abandoned by the supposedly advanced and highly skilled allopathic medical system. I am now treated like I am some sort of hypochondriac who is probably seeking a social services sickness benefit or something - even though I have never once asked any f these people for anything except a diagnosis and treatment. I haven’t asked for medical certificates even as my bank account has gone significantly into the minus. I have borne the cost of almost everything myself, except for the few things that family members have paid for in an attempt to help me. I receive no social security, no pension, and no sickness benefit. The government here have made even trying to get one a full time job in and of itself - leaving aside that it was made clear to me by people from Centrelink that if I as a white, slightly older than middle-aged Australian heterosexual male sought one, I would still be expected to undertake ‘activities’ (volunteering, trial work placements or training and education) in order to keep it - unreliable and unsafe eyesight be damned. So, I aggressively resent the implication, which has only made it easier for me to get to the point of yielding to Thomas Edison’s ‘greatest weakness’.

None of the doctors, neither GP or those at the specialists office, have taken anything approaching a complete history. None have asked me, or cared to note even when I have mentioned them, the increasing unusual joint pain, bilateral tinnitus or other symptoms I am experiencing. None have ordered blood tests that might rule out, or in, potential infection, auto-inflammatory or auto-immune causes. And now even getting an appointment to see the GP is a mission in ‘all we can give you is a telephone appointment at the end of next month, and the nearest clinic appointment for you will be a couple of weeks after that.’

Left to my own devices I have tried some very short term anti-inflammatory medications I have here that I was prescribed several years ago for other reasons. Diclofenac and Celecoxib. Neither should be taken for more than a few days, but after taking the first for a week and now the second for two days what I am seeing is that the joint pain is reduced, the eyesight issue has gone from wildly fluctuating to a more consistently blurry with vision most days like the text in the first image in this post, and rather than having a screaming headache three-to-four days a week I have had one screaming migraine on the Sunday just past. Yet again I experienced elation as things got a little better, or at least a bit less bad, for the first few days... only to fall back into depression as I realised that this too was not a cure. But it produced information nonetheless that none of the supposedly expert people I have seen had cared to look for as they book their seven minute appointments, push patients out as fast as possible, and charge fees more alike the local lawyer than a caring medical service.

That, my dear reader, is the state of our healthcare system right now. That is the experience of even an educated person such as myself who has spent years working within these professionals’ domain.

Thomas Edison once famously said that our greatest weakness lies in giving up…

Sadly, that might be all I have left to do.

It’s definitely the only thing I haven’t tried yet.

Now I need to go lay down with a heat pack on my eye and hope I don’t spend the rest of the day regretting the last half-hour on my computer.

In order to write this post I had to work sitting with my face less than six inches from a huge 57 inch monitor and with text that was more than an inch high. Not good.

ADDENDUM:

I left out the most incredible part of all.

Each person I saw at the ophthalmology specialist’s office told me that by virtue of the fact that I could pick through the multiple blurry images to identify the four inch letter on the eye chart on their wall… I had 20/20 vision!

That I was safe to operate heavy machinery… to drive on public roads with you and your children.

I guarantee that not one of them would want me to be the chauffeur driving their kid home from school, but EVERY one of them said I had 20/20 vision and was okay to drive MY kid home. They saw what they wanted to see and ignored anything I was telling them about how there were multiple blurry images and my depth perception was completely out of whack because it didn’t fit into their seven minutes of clinic time.

I have been getting someone else to drive me because I care more about your family than they do.