Life and times in the year of Corona

 As the year draws to a close, I thought I should put fingers to keyboard and let you know how the year has been.

2020 will forever be remembered for the Corona Virus and the mass devastation that this world-wide pandemic has caused.  Here in NZ, we managed to get through the pandemic relatively unscathed and have watched the rest of the world, (especially the USA) with concern.  Haydn and I celebrated out 25^th Wedding Anniversary during the lockdown. Actually, we had a perfect time working and living in insolation for months.  I bought a BIG screen TV and now, every night is movie night! The most significant change in our dynamic is that he is now the chatty Kathy and I am the quiet one. Haydn learned to cook this year and is now quite the chef!  I discovered that Haydn speaks so loudly on Teams that I had to move to another floor of the house and still close my door.  He sits with his hands over his eyes on every call and now even does that when he is in the office, people keep asking if he is okay 😊.  He had his first health scare and we had to go to A & E for him for the first time since arriving in New Zealand in 2006.  All is well thankfully and we can laugh about it now.

My youngest daughter moved out but ended up returning home a few months later – because we have custody of all the dogs 😉.  We have had some laughs and some tears but overall our we loved every minute, to the extent that we wished lockdown could go on forever.  Although I imagine, our version of lockdown was different from many other places in the world.  We could still walk the dogs and get out of the house and into nature quite easily, and the NZ population cooperated, and we were all safe. 

There are clear advantages to living on a remote island in the Pacific, with a government that took swift and decisive action to ensure that things didn't get out of hand (unlike the idiot Oompa Loompa with the tiny hands!).

While I can make light of our experiences, there was a serious side to this year.  Many people lost their jobs or were forced to close their businesses due to the loss of revenue.  We held our breath when many of our relatives got Covid-19 and are relieved that most managed to pull through.  We lost some special people who are fondly remembered and sorely missed.  Our hearts go out to everyone that has suffered a loss this year. I hope that with time and the love of friends and family around you, you will find your way back to happiness and a new albeit different way of life.

This year we also got our utility belts on and built a fence between our untidy neighbours and us.  Now my husband is putting in a laminated wooden floor to replace the carpet that the Puppycathorsedog ripped up with his running and skidding antics.  That dog is just too much!  He is the cutest, idiot dog I have ever had, destroying every "smart Labrador" theory that ever there was.  The fool is incapable of learning and overly capable of loving, and so we are stuck with the crazy fool of a dog.  He and my baby are an adorable but odd couple that entertains us for hours on end.  Cushla, our 12-year-old grand lady Poodle-Shih Tzu has gone senile and forgotten that she is old or that she doesn't like dogs and sometimes, even joins in the fun.

My ever-present companion does not claw at my sanity quite as much as it used to.  I have noticed that my pain levels are slowly creeping up, but that is probably because I am doing so much more than I was able to before the surgery. I manage without the very heavy opioids that had my head swimming for 2018/2019.  For the most part, my levels sit at around a 5/10, for most of the day, creeping up towards 3 pm and then dropping down a bit again overnight.  This is the best I can hope for, and I accept it for what it is. 

In my last post, I mentioned that I was starting a psychology degree while working full time.  I did three papers in both semester one and semester two, and despite Covid-19 and lockdown, this went pretty well! I will admit to high-stress levels towards the end of semester two, as I had numerous assignments and tests and a full workload all at the same time.  

I am blessed to have a husband, family, boss and colleagues who are all so supportive and understanding.  This encouragement and tolerance made it all possible.  

I ended up completing six papers, (90 points) and achieving an A average, which I am thrilled about.  I am sure about my path, and my only regret is that I have come to this path so late in the game.  I wish that I could be a full-time student and finish as fast as possible, but the real world does not work that way.  The question now is: do I take three papers or, do I make life a bit easier and only take 2.  The BIG negative is that if I only take two papers, then it will take another four years to complete, which is not appealing at all.  Decisions, decisions – at least I have some time to figure this all out because the health faculty does not have any papers available in summer school.

For the first time in six years, I do not have a conference the week before Christmas. I have to say that I find myself remarkably filled with Christmas spirit and a lightness of mood that is uncommon for me at this time of year. So I wish you all a very merry Christmas and let's hope that 2021 is filled with wondrous and joyful things.

T.

Suspend your Disbelief!

Well, here I am dear friends… finally, I will resume my writing!

I refer to my FB post (made today) “Reality has set in - I have an empty nest, and so I am starting over... not with children (hahaha) but with a complete career change. I make myself accountable to you all that I am starting and will (eventually) complete a BHSc Degree in Psychology, while I work- FULL TIME! Crazy or not here I go... 😲🤓#maturestudentjourney #crazyisarequirement.”

Yes, it is true.  At age 46, I will begin an undergraduate degree in Psychology at my own university (AUT).  This is daunting for 100 reasons, but here are the highlights:

• I haven’t studied anything this big since the 1990s!
• I am still working full time!
• All my colleagues will be able to see my grades – SH1T – no pressure!

As daunting as this is, I have a great WHY.  I am very bored with administrative work and need to find new challenges. My back surgery, while it has fixed everything structurally, has not really resolved my pain.  This means that I will not be able to continue working an office job indefinitely, and I am not ready for a sickness benefit or retirement. I am very interested in the topic and would really like to be able to help people. 

So please, wish me luck and help me remember so that I do not fail.

I will be the little engine that could.

The end.

It's been a while...

Yes, it really has.

The past two years have seen some significant changes indeed.  We have finally purchased a house - in Stanmore Bay - and we have a new wee dog "Akela" who makes me laugh every day.

My beloved father passed away due to complications associated with COPD and Renal Cancer.  He is missed every single day.  My Mom is in a Rest Home and is still trying to find a new normal. 

My oldest daughter is in Wellington working and saving for an OE and my youngest is in her last year of high school.

I had a hysterectomy in late February this year which went well. But, sadly, my body is getting progressively harder to deal with and I am beginning to question how long I will be able to continue working full time.  My last MRI showed that three discs are bulging, two of which are torn, I have two compressed nerves (L4 and S1) and synovial cysts and fluid collecting around the joints in my Lumbar spine.  This toppled with my existing CPS has made my life a world of pain.

Basically this means that I will need surgery again to fuse my L-spine.  I am getting used to this idea at the moment but it has been difficult to accept.

I have started 2 books but they are still in early stages so not much more to share on the writing side for now.  I will update again soon.

Entitlement - the belief that one is inherently deserving of privileges or special treatment.

I have not posted in some time as I was working on a different writing project but once again I have found inspiration...

Entitlement:  Type the word into Google images search engine and you will find a whole lot of funny quotes and images about entitlement.  How is it that so many people have an unrealistic sense of what is fair or what they deserve?  Is there a greater conspiracy here or do so many people really think that they are "The Shizzle"?

Just this week I had a member of staff asking me to pay for a taxi for her to get to work because she sprained her ankle tramping over the weekend and so she was not able to walk to work as she normally does.  My first instinct is to always be of assistance but upon reflection and further discussion I have to admit that this is an unreasonable request.  Imagine for a moment if every workplace was responsible for paying for staff to get to work when they injured themselves outside of the workplace. When I explained that it was not the university's responsibility to get her to work, within her normal hours she replied that it would be our responsibility if she called in sick and we had to find someone to teach her class. This is fair enough and also true enough, however I counter (in my head because it is not my argument to make) that normally one would not take sick leave for a twisted ankle, would you?

This made me think of other people who I believe have an unusual sense of self-importance...

My teenage daughters', for example, who seem to think that we should always purchase/pay for what they want, when they want it.  Or, that we are put on this earth to cook, clean and taxi them around whenever they require it.  I reluctantly admit that I am probably a bit guilty of enabling them in this belief, because I want to provide for them and I also want them to be able to rely on me but, have I created monsters who will go through life thinking the world owes them?  No, I don't really believe so.  They are fundamentally really good kids and they give me such joy and a huge sense of pride - well, mostly anyway.  I also think that I let them get away with doing very little around the house because I know that eventually (all too soon) they will have to be adults and take care of themselves.

Okay, yes, I digress, back to the topic:

I know someone who has used money that was supposed to be a loan and has never repaid it, a rather large sum, which he claims he is unable to repay.  This same individual takes an overseas trip every year; drives a nice car; has a band new home in a country estate, complete with a cinema; takes his kids on extravagant holidays; etc.  The persons who lent him the money (which was pretty much all they had) now live on a state benefit in comparable poverty and seldom see or hear from him.  He does not seem to think that he has done anything wrong, which baffles me completely. 

It is worth noting here that the lenders have not taken any action against him.  Which means that he has no pressure to take any responsibility for his actions.

Why is it that some people have no conscience while others dutifully pay their own way, not taking or expecting handouts?  Is entitlement something that your parents raise you to have or lack or is this an internal moral compass setting - more nature than nurture? What makes one person think that he/she is due more than another person or conversely, what makes others believe that they are due/deserve nothing at all.  Is there a way to strike a balance?  I don't know, but I sure hope so.

I have a pretty good sense of right and wrong, this doesn't make me perfect - not by a long shot.  But I try to be a just and good person.  I do my best to pay it forward when I can and help my fellow man, if I can. 

All the world's a stage and we are merely players.  Do you mean to play a villain or a hero?

Sorry, not sorry?

It's impossible for me to articulate exactly what it is that living with centralised pain means. Like with most ailments, there are good days and bad. Sometimes… days turn into weeks, months and even years.
As this became a part of my life I found myself comparing a real pain to what I imagined a certain sensation would feel like. Early on, these descriptions were commonplace and uninspired. I recognised that vacant glaze in the polite eyes of my colleagues, friends and family. After all, there really are only so many times that you can hear someone recite, “Not great today” or “still in a fair bit of pain” before they no longer wish to hear how you really feel. The sad, helpless tilt to the head and the inward lip pucker that shows sympathy but little comprehension. The drama queen in me is tempted to shock you with wonderfully descriptive soliloquies in response to some inane comments that have been passed… You: You look tired. Me: Do I? I guess that’s because I didn’t get much sleep last night and when I did, I dreamt that I was an unwilling victim in a medieval torture chamber. I may have woken up screaming but can’t be sure, I was wet with sweat because I have to keep my electric blanket on all the time to alleviate the bone chill sensation. I was in too much pain to get up and take painkillers and so I just lay there for a couple of hours contemplating the merits of driving off a cliff.” You: Isn’t there any medicine that would help? and/or Do you really need all that? Me: I take medication, in all honesty, I swallow an average of 10 to 16 pills a day. Does that sound excessive? Well, imagine that you had the sensation that a small rodent was running under your skin. It's little claws wrenching at the muscles and plucking at nerves. Then picture, for just one damn minute that the rodent forces itself in between your ribs. The selfish little shit starts stretching and tugging on your intercostal muscles causing a muscle spasm that makes you think that you are having a heart attack; or it burrows into a muscle like a dog in a pile of blankets, scratching and pawing around in little circles before finally settling down in the bunched up tight mess that it has created. Now that the rodent is asleep a new tormentor awakens. Using a liquid nitrogen Captain Cold wanders around maliciously freezing the odd bone or two with one hand while using a pick axe to shatter, pierce and chip some of these bones - just for giggles. While all this is happening you are suddenly distracted by the invisible 10-ton truck has just pulled up onto your sternum instantly removing your ability to inhale and, or exhale. Now, please, try to imagine that the only way to get all this to stop is to chug a handful of painkillers, anti-inflammatories, muscle relaxants and anticonvulsants. You: You sure lie down a lot! Is reading and watching Netflix all you do? Me: Please refer to the monologue above and let me know… If your body did crap like this would you be moving around for fun? My house is tidy and my family is fed. After a day at work, my body puts on a little protest. This is on a good day. On a good day, I sit and stand at my desk for 8 hours. By 5pm I have allodynia (heightened sensitivity) to anywhere my clothing does more than touch my skin. My bra feels like barbed wire cutting into my flesh; the waist on my pants (which are not tight) has caused an ache that is akin to a stitch but circles my waist; even my socks have caused a swelling that would make you think that I had tight elastic bands around my ankles. So yes, after a full day I need a little lie-down. If I lay there without something to distract my brain then all these sensations would throb and hum with malevolence. I thank God every day for Netflix and books – they are the saviours of my sanity. Do I aggrandise the situation? Would it make you understand? No, it isn’t like this every day but if I am having a bad day then this is really what my body feels like. You: You sure do drink a lot of coffee! Me: Do I? Well, perhaps that is because for me a good night is six hours sleep or because the medication that I take is strong enough to knock out an elephant. I do not partake of alcohol with any regularity nor do I smoke. I do not over-medicate in the way many with my condition do. I still hold a full-time job that I perform pretty well and so I really do think that as far as vices go, coffee is not such a bad one. I know that I can be morose and occasionally a bit snippy but the last thing that a person in pain wants to hear is: You: Wow, you sure are grumpy! or What’s eating you? Me: Let me adumbrate just how much things suck inside this vessel (my body) at the moment by explaining some little-known facts to you. My neural pathways are damaged, occasionally I receive a “confused” pain signal for something that is only a remembered pain – the sensation is exact in all its vividness - bar one crucial fact - it is just a memory. Could you even conceive of an existence when you wake up feeling like a bird who has had her wings ripped off, or would you endeavor to walk around with the sensation that you have been chopped in half and then glued back together (badly) simply because you slept in an unfamiliar bed, or carried a bag of groceries, or some other equally frivolous action or even inaction. Do you have the vaguest idea how difficult it is for me to ask for help? Can you visualise how humiliated I feel when I cannot reach my own foot, to tie my shoelace or cut my toenails? You probably cannot. You probably think that because I am in pain all the time that I should just be used to it and get on with things. Or that I should “push through” and “force” myself to do more. Well, if we could swap shells for just one month and you could carry mine and I yours, then perhaps we would have more tolerance and readiness to help each other. Oh, I know that I have my faults too but I can still remember what it was like to be “able”. How do you suppose you would cope if you had constant but varying levels of pain? At this point, my eyes swim with unshed tears because I am jealous of you and frustrated with you but I would never, ever, wish this upon you. Not for a day. Then I would smile at your shocked face, take a deep breath and ask you how things are going for you. I have limitations that on occasion make me feel sick – like I have a body flu; or disabled – because I have difficulty walking, standing and, or sitting. Centralised pain is an invisible illness that makes you feel so much older than you really are and infinitely less able than you really should be. The worst thing about it, though, is that it changes all the time and so it is impossible to get used to. Please don’t misunderstand me, I am not actually after pity, nor am I trying to shame you for not knowing how to behave. All I want is a little tolerance and understanding, some empathy and encouragement. Chances are that even if you could guess what I want or need - I will still get frustrated. That isn’t a response to you - it is a response to my own limitations. Self Portrait: Pain swirled around her like the fine, clingy gossamer threads of a spiders’ web. Occasionally brushing against her, then sticking to her over-sensitised skin. Frustrating to pinpoint and near impossible to grasp and remove. She found herself constantly twitching, squirming or brushing her hands against what appeared to be phantom tickles and irritations. As the bus driver stomped on the brake, yet again, she paled. Her left hip felt shattered, eradicating the spiders’ web in a surge of ice-cold burning agony. Her breath caught and the mask slipped and pain registered for just one moment. She fought to remain calm as a knife buried to the hilt, smashing the breath out of her in a whoosh! Tiny beads of sweat appeared on her waxy face as she drew in a slow shaky breath. It was not lost on her that to some she probably appeared as insane as she felt. Her response to these sensations was often almost impossible to disguise. But, she hid them as much as she could. Surreptitiously she tugged her mask back into place, stoic in her determination to appear normal.

I'm also not me...

Good health is something we all take for granted, or is it?  I have been reflecting on this for a couple of weeks now.  Maybe this is because of my own physical health or being of an age that is more exposed to the vulnerability (either in ourselves or elders).   Whatever the reason, I have realised that many of us live with “something” that challenges us in a physical way.

 

I am not talking about the “normal” scope of age-related ailments.  We all expect to be less able as we get older.  Less able is one thing and unable is another.  I recently watched “You’re Not You” a movie starring Hillary Swank as a concert pianist who is struck with ALS and much like “Still Alice” this movie left me a blithering blob.  Living in an age of acute awareness of incurable illnesses such as Parkinson’s, Alzheimer’s, ALS, CPS, Cancer or even something that still, somehow, remains undiagnosed - whatever it is, it is not fair.

 

Any one of us would agree that when these ailments are “early onset” or strike the very young, that is even more unfair.  As parents we would all happily trade places with our children if we could.

Indeed: Life. Is. Not. Fair!

Over the course of my journey I have realised that no matter what your circumstance is you really don’t have to look very far to find another poor soul who has it worse.  I can recall the first time I had this epiphany with absolute clarity. 

My daughter had just had 6 hour spine surgery and she and another child (both 14 years old) had just been returned to high care from surgical recovery.  I was beside myself from a day spent in absolute hell and I must have worn this on my face with every stressed wrinkle.  The boy was put into the ward next door and we the parents had been asked to step outside while the nurses and doctors were getting our babies settled.  This mother looked at me with an expression that mirrored my own and asked what procedure my child had had.  I replied that she had endured major spine surgery and returned the question to her.  She replied that her son had major surgery to his leg (I remember thinking oh, a leg is not as bad as a spine).  After meeting and talking a couple more times I learned that not only did this boy have “leg surgery” but had endured Chemo, his own leg had been amputated and a new leg had been transplanted due to bone cancer.  I was humbled when I realised that assuming that my daughter was worse off was not only petty and pathetic but also completely untrue.  Shame washed over me and in that moment I was incredibly grateful that all she had was spine surgery.

Perspective changes everything.

I wish that we could share our stories and experiences in such a way that it is not a pity party about what we suffer, nor is it a problem that you are expected to provide a solution for, but rather a call for understanding and celebration of that of which we do not suffer.  To feel real empathy for our fellow travellers and to show true kindness is not always easy.

If we can try to remember that there is no possible way for any of us to truly feel what someone else feels yet still care for them and about them, then maybe we can reply, “No, life isn't fair, but it’s a journey that we can share.”

Still thinking...

Just finished reading "Still Alice" by Lisa Genova:  This story has been made into a movie and actress Julianne Moore received both an Oscar and a Golden Globe.  I have yet to see the movie but now (after reading the book) I am very keen to!  It is an emotional read and I laughed and cried along, maybe more than most.  I was able to draw parallels that a perfectly healthy person probably cannot.

While my mind is probably okay (I hope!) my body is failing me and I share the fears that we read about. I am genuinely afraid that one day I won't be able to do things for myself and that I will become a burden on my loved ones.  Like Alice, I have also formulated my own exit strategy so that I can leave this world with dignity.  And... even more like Alice, I am afraid I will leave it too late!

Alice had five questions that if she was not able to answer, would lead her to instructions on what to do next.  I have no such a plan - not yet.  But, I have had the discussion with both my husband and children that if I was at a point where my quality of life was less than that of a beloved old pet with hip-dysplasia, they are 100% clear on my wishes.

My heart broke for Alice and I understood her frustration as clearly as if it was my own.  I think the story even made me feel grateful (for the first time in a long time) that my failures are mostly physical.  I am still far from incapacitated and still independent and mostly functional but I have that vague awareness that this will not always be the case and at times even have a week or two to "practice being useless" when I have a bad flare.

I might even be inspired to write my own story, in as much as it would be based on a woman living with CPS and other largely unheard of invisible pain conditions.

Having just come out the other end of yet another unsuccessful intervention (TFI) that left me worse off for over a week and then back to my unpleasant normal self I think that I might have enough material to actually get started on something more important than this little blog with it's little, but well loved, audience.

First I have a bit of a "TO DO" list, but after that, I will give this some more thought.