My blog tells me it’s been two months since my last post and much like any other endeavour I’ve set out to undertake since the ill-fated (see what I did there? Ill…fate…yeah…) downturns in my wellbeing half a decade ago, I set out with expectations. Oh, expectations! I repeatedly fail to meet them. But I think to myself, what’s a life without expectations? Goals? Aspirations? My answer to that self-posed question is: not much. Visually I see a plate of limp, unadorned noodles. Don’t know why – but that’s not the life metaphor I want for myself. I want a tower of spaghetti shaped into the likeness of an Escher sketch.
Much like that image it feels like I’m going around in circles with the illusion of going up and down but when you pan out on the picture it’s just the same damn cycle. Although it feels like this, I can’t afford to let myself believe that what I feel represents any kind of external truth. I must rationalise with myself, forcefully if necessary, that I am moving forward. It’s an expectation I have for myself. It’s one that I don’t feel I can afford to fail to meet.
The last month or so has been one of the hardest in my life. If there was a Relative Shittiness Scale then it was in the red zone. Big claim, I know. What is my evidence for this? Well if you’re a veteran of chronic illness none of what I’m about to describe will likely phase you. You may nod sagely in recognition or find yourself thinking “that’s nowhere near as bad as that time my (insert body function) ended up (insert drastic and highly unsettling malfunction)!” That’s cool, I don’t want to win the ‘most pathetically sick’ competition – what’s the prize? Euthanasia? Sorry, I tend to dark humour. Taboos are where the best comedy is mined from much of the time and what I’m talking about definitely isn’t light dinner party repartee material.
It started with waking up at 3am a few days before Christmas feeling like the room was spinning, my heart was racing and I didn’t know where my limbs were in relation to my body…you might think they’re hard to lose, what, hanging off your torso and all – but lose them I did. Then I found trying to move incredibly difficult like I was paralysed and my legs shook with weakness if I tried to simply bend my knees up in bed. My mouth was very parched and I felt hot and clammy but as soon as I removed my doona I began to shake uncontrollably…teeth chattering, whole body convulsing. I simultaneously felt like I urgently needed to empty my bowels and a sense of physical panic. My body was not happy.
I managed to wake MB then slowly held the walls as I made my way the few metres back to bed unable to keep my eyes open as whenever I did the whole world seemed to be falling away to the left and my eyes kept pulling themselves to the side.
In five years of illness I’d never called an ambulance, but I felt like I was dying so that seemed to be the appropriate scenario. It was too early in the morning to call my Dr and I’d already laid in bed for about 30mins trying to ‘ride it out’ before waking MB. So call the ambulance we did and two burly blokes showed up and did some tests. I ended up in hospital but unfortunately I didn’t get much joy there. I was spoken to in a condescending tone after I mentioned my Lyme disease diagnosis “so you really think you’re sick enough to be here?” Then when I was too weak to sit up to change into the hospital gown “get up…get up…GET UP!” I could barely speak or move. I was asked what medication I was taking and mentioned one antibiotic and when I was asked what I was taking it for, internally writhing at the challenge of trying to explain the complexity of Lyme Disease, the co-infections and how they all need to be treated separately and this drug was for a co-infection I managed to utter “bacteria”. The female voice that asked snickered and I later heard her relaying what I said to a colleague in a mocking tone and laughing.
To cut a long story short my blood came back showing my potassium levels had dropped dangerously low which can cause the paralysis and everything else I went through and if left unaddressed can lead to severe cardiac problems. The ER Dr remained cool towards me when relaying this news and arranged for an IV of potassium but failed to dilute it in enough saline which makes it incredibly painful and burning in the veins. Instead of rectifying this I was given half a bag and told to leave to free up the bed.
I wish that was the worst of it but I subsequently had two more similar episodes and not knowing why my potassium had dropped in the first place, was terrified it was the same thing happening. But that was not the case and I am now working on my Dr’s theory that being off my treatment after surgery had enabled the co-infections to flare and I was having seizure-like episodes that are apparently not uncommon with Lyme patients but nothing is known about this in the hospital. Instead the subsequent two visits to ER resulted in humiliating experience of disbelief and repeated suggestions that I should see a psychiatrist.
I have never felt so physically sick and emotionally shattered as I did after my third ER visit when I came to learn the hard way that although I am very, very unwell there is no help available because none of the staff know anything about the illness I have. I wanted to die. It would be better than suffering so intensely and then being told you’re mentally unwell. I had heard stories of other patients going through similar things and they had my full sympathy but I somehow thought it would never happen to me.
Now I’ve been stable for about two weeks and am taking it day by day. I have had multiple consults with my Lyme Dr who has done a fantastic job of unravelling the puzzle of why I’m having these episodes. MB and I will now be looking to invest in buying our own equipment to monitor my vitals at home for peace of mind and as an evidence base if we need to go to hospital again though I now understand why many Lyme patients refuse after a while to go to hospital – even if they feel like they’re dying. I never in my worst nightmare could’ve imagined this would be my life. But it is.
So, yeah, I’ve dropped the ball with blogging in that time. Shit just got real and I’m looking down the barrel of a year of more of the same – feeling like I’m dying as my Dr tells me the only real thing that will make a difference is treating the infections causing the symptoms as they ravage my body. This feels like a Herculean trial, to feel so ill but know that the only path to wellness involves more pain and suffering as the bugs cause a Herxheimer reaction as they are killed off. The next chapter is still unwritten and I’m so, so tired but when life squeezes you down to the bones you still have a choice: give in and let go or keep fighting. For now I choose the latter and I do so hand in hand with the beautiful souls who have stood by me and help me share this horrible journey. They are my heros.
The title of this blog has several meanings. I want this to be ‘over’ as in finished but it also has the connotation of being above a situation and that’s where I try to be. To ‘overcome’ whatever gets thrown my way. It also applies in the saying “I’m over it” when you feel you’ve reached your limit and just can’t take anymore. What I’m learning, is, our limits can be stretched far more than we ever conceived could be possible. It hurts, sometimes excruciatingly, but I see strength in every new beginning after a period of “I can’t go on anymore”. So I’ll finish up with this quote and once I collect my fractured pieces I’ll try to bring some humour back to this space.