Scarlett’s 2nd Birthday

I can’t believe it’s been almost two years since I wrote anything here! Scarlett (whose birth announcement was my most recent blog effort) was born 10th March, 2016, and we’re just about to celebrate her second birthday.

The past two years have been among my hardest, physically – dreading having to stand, walk to the loo; holding on because I knew the walk from one room to the other would leave me in hours worth of agony… Crying, telling myself it only makes the pain harder to cope with, so suck it up, princess! An endless cycle of going to my GP and not being heard – truly, how hard is it to understand that a previously active, over-achieving workaholic might actually know what she’s living now as a disability pensioner?

The resultant depression, not knowing who or what I’m supposed to be now that I’m no longer a productive member of society and am reliant on government handouts, has been particularly difficult. While glad to say that I’ve come through that dark, dingy tunnel, there was an extremely long period wherein I couldn’t even see the light, let alone aim for it!

I’ve battled (thanks to a childhood wherein both parents let me know just how unwanted, unloved, I was) all my life with feelings of worthlessness. This, I feel, is why I’ve striven to be the best I can be at whatever ‘this moment’ is. I’ve survived far worse than a body that refuses to follow what my mind dictates is the best step forward, so I knew, even as I wondered what the point of breathing without truly living was, that I would somehow get through this, too.

Fast forward two years… How are things now?

My health has improved slightly. Thanks to a change to a stronger pain medication, and removing nine others via seeing a new, more helpful, doctor, I not only no longer sleep most of my life away, I’m also able to be more active before the need for rest arises, yet again. I can now manage ten minutes light activity at a time! That might sound paltry, but after the tunnel it’s positively miraculous, to me.

It’s pure bliss to sit here, typing this blog post, and not have my lungs painfully protest.

As a result of the medication changes and a nerve block in the left hip (the same failed in the back due to the severity of damage there), I’ve managed (without exercising overly) to lose eleven kilograms. This, while not all the weight I need to lose in order to return to pre-injury weight, has encouraged me to push through pain-hazed moments to exercise lightly (either housework, light yard work or in my above ground pool). I’ve managed to lose some of the hip weight that particularly annoyed… I’ve also trimmed down overall and lost a couple of dress sizes. Still a long way (twenty kilograms definitely, hopefully thirty ultimately), but I’m doing my best while waiting for the surgeries to fix the back & hips – wait, I didn’t mention that in the time between posts I’ve been proven right about what ails my own body! Imagine that 🙂 )

Despite numerous doctors/specialists telling me it’s my back (which I’ve always said is part not all of the problem) causing my mobility issues, I finally (again the more helpful doctor 🙂 ) had an MRI (through referral to the same orthopaedic surgeon who told me “it’s your back…”) that revealed the cap deformity in both hips. Finally, an explanation (and hopefully soon a solution) for the hip pain that’s steadily become worse since my early twenties! The cap deformity, layman’s terms, means that, due to my hips not forming correctly as a child, bone spurs have formed because of the ball and socket being bone on bone, no padding from the various fluids/ligaments (whatever) usually found therein. The surgery, when (as a public patient) I’m finally seen by a surgeon in Melbourne, a mere 5oo plus kilometres (round trip) from my home, will remove the bone spurs.

Perhaps, given the arthritis damages also detected (so much for all the doctors who told me I was wrong to say it was present – I’d based that self-diagnosis on the fact that I know what arthritic changes feel like because I have them in my hands, feet, legs, back, shoulders…), they might decide to replace the hips altogether. This wouldn’t solve the problem, however, as the socket, not replaced in these types of operations, will still be deficient. You have to believe it would halve the resultant issues though, right? I’m hopeful that shaving the bone spurs off will free up the nerves that are being crushed due to this condition, causing sciatica – the worst pain imaginable every moment of every day that has reduced my mobility within the home, never mind out of it, severely. My weight loss goal will be so much more achievable, despite the back issues!

Along with being referred to an orthopaedic surgeon re the hips, I’ve also been referred to neurosurgery for the back. The exit nerves located left and right of the lumbar area, due to L4, L5, S1, scoliosis, straightening of the lumbar curvature, pea soup and so on, are also being crushed. The combination of these two surgeries will, I hope, see me enjoy an improved quality of life. If not, at least I can say I tried.

Whilst I wouldn’t swap city for country living, it’s a shame the offshoot is so much travel (exhausting because of the chronic fatigue related to the fibromyalgia). The hip referral was straight to Melbourne as there’s no one rurally who can do arthroscopic, apparently. The back surgery was initially to a hospital an hour and a half away. Both hospitals sent me a letter acknowledging the referrals and explaining that their wait list for the initial consult with their surgeons is extremely long – We’ll write you when an appointment is available. So, I knew the operations are a long way off. I patiently waited almost a year after referral, fielding my GP’s questions each month when asking for new pain medication scripts, along with enduring censure from the government approval authority who say Yes, she can have her pain medication this time, but not for much longer as there’s an indeterminate cut off date. You can imagine, I’m sure, the stress this adds to an already fragile mind – the thought of returning to my previous invalid status appealed not at all; wouldn’t it be nice if the surgeons worked to the same cut off date as the government, who, ironically, fund the surgery? Then the hip hospital wrote to say I’d fallen off their list during a system upgrade, prompting me to phone the back hospital to ensure the same hadn’t occurred there… A month later, I’m still waiting for the promised letter concerning the fact that they no longer have a neurosurgeon attached to their hospital. My GP knew nothing of this! Nor do the government authority agency, despite them feeling superior enough to question my right to pain medication scripts, as if I’m some sort of illicit drug abuser! So, I’m now waiting to hear from the Melbourne hospitals, one for the hip, one for the back. I’m going to laugh hysterically if the appointments, after waiting so long, clash or, worse yet, the operations do!

It truly doesn’t pay to ail physically – you lose your previous high end income earning ability. More than that, you lose your dignity in so many ways – people looking down their noses, even in this ‘anti-discrimination’ era, when they realise you don’t work; being judged because you have an invisible illness; not being able to afford the basic shopping supplies, sometimes having to put some back at the checkout (and, isn’t there always a long cue when that happens?); constantly juggling bills due – sometimes having to choose one to pay late because there just isn’t the money once you pay the others due that same fortnight. And every fortnight, there’s something due, or overdue.

Still, I have my health. Hahahahahaha! Seriously though, I am not as ill or infirm as others I see or know. I own my home and car outright, having worked hard to make it so. I’m not in debt beyond the usual utilities, even if they sometimes make me feel I’m falling backward. My sense of humour is intact – I’ll know things are beyond hope when that, too, leaves me for longer than a brief period.

Until then, onward and upward – se perpetuer! The glass is half-full! (Is that Celine Dion I hear in my head? I will go on…)

After all, in true Sisyphus style (see http://www.mythweb.com/encyc/entries/sisyphus.html), there will always be moments of joy to offset lesser moments – my gorgeous granddaughter’s proof of that! Gosh, that reminds me, she’s soon to be joined by a little brother or sister, due a month after her birthday!

Isn’t it marvellous when you have things to remind you that your life isn’t as dismal as you believe in the depths of pain-filled despair. As people who more than survive, we will always find reasons to live, not just survive! That’s my wish for anyone reading this blog (sorry, I can’t make myself believe there’s anyone actually following along with my ordinary life lol), that no matter how much hard slog it is to be happy, you will, like me, continue to find your reason to take the next breath, knowing that nothing, good or bad, lasts forever, and all we have is now. So, aim to be the best you can be now, and let the then slide away, as it should – provided we’ve not acted maliciously or harmed ourselves or others, it’s what we do now that determines our tomorrow’s…

 

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