MS – ONE YEAR ON

I haven’t had so much as a head cold for nearly a quarter of a century. People can be dropping like flies about me with all manner of infections and viruses but their germs are somehow never able to penetrate the cloak of super-immunity that seems to surround me.  It wasn’t until I hit the dreaded menopause at 53 that I started to come unstuck.  Even then I didn’t feel ill so much – just exhausted by relentless hot flushes to the point where I would often feel light-headed and disoriented.  Occasionally I would catch myself on the verge of spontaneously losing consciousness for a few seconds.  Not long afterwards I began to experience a vague sensation of weakness in my right leg accompanied by a corresponding tightness of the gluteal muscle in my left buttock.  Nothing major, just a weird sort of sensation really.

Fast forward three years later and my condition had slowly deteriorated.  Not to the stage where I was completely debilitated by it but my ability to participate in a lot of activities had become limited.  After baffling an army of medical professionals and natural therapists on both sides of the Tasman, I visited a neurosurgeon and in June 2015 I underwent major spinal surgery for a condition known as spondylolisthesis.  Initially I was hopeful that I would finally be rid of this thing that was now overshadowing nearly everything I did, but the downward spiral continued.

Just weeks after my surgery I was dealt a major blow.  I had been made redundant.  Not only did I feel dispirited and disappointed by everything about the circumstances surrounding this, I began to lose faith in myself.  Christmas was drawing closer and since my efforts to find work were unsuccessful I ended up on a benefit.  Financially I was close to bankruptcy.

Although this worried me I still held on to the hope though that I could overcome my ‘dis-ease’ and the obstacle course of seemingly insurmountable problems that were being scattered liberally in my path.  I think the thing that saved me from plunging into a pit of hopeless despair was the fact that I have two incredible children and a very supportive circle of genuinely good friends.

Eventually I was able to find work but as it was only a temporary position I was still not out of the woods financially.  Nor was I any closer to finding out why my back problem was worsening after the surgery instead of the improvement that had been promised.  The effect that menopause had on me had also become extreme, something which I also found puzzling.  I had expected to sail through this fairly unscathed.  I’d never had any menstrual irregularities and no-one else in my family had been affected quite this badly.  Eventually I came to the conclusion that the only explanation for this unusual and mysterious weakness in my legs and the extreme menopausal nightmare I was experiencing was that it might be psychosomatic.

As I explored this mind-body concept more fully I stumbled across the work of John E Sarno MD and a condition I had not heard of before called Tension Myositis Syndrome.  He presented a very logical and convincing explanation of how chronic back pain and a lot of the current health problems plaguing modern humans are the result of the mind’s attempt to create a distraction from emotions that they don’t want to expose and have to deal with.  How anger and tension hidden deep within the subconscious accumulate due to the demands on our lives to be a good person, push harder, be liked, helpful, make everyone happy, never fail—in other words, to be perfect.

To me, this not only explained my mysterious symptoms and the lack of any hard evidence of any real ‘disease’, I also recognised myself as being very accurately described in the personality traits of people most likely to suffer from it. Those who suffer with TMS, says Dr Sarno, tend to have restrictive personalities, repressing or suppressing emotions such as, rage, anger, aggression and guilt. We want to be viewed as “nice” people. The problem is we put far too much pressure on ourselves, trying to live up to high expectations that are virtually impossible to meet.

Although this made perfect sense to me and I knew in the back of my mind there were things in my past that I had once been very angry about, I sincerely thought that I had dealt with all that crap and moved on.  Despite this, I was now 100% certain that whatever it was I was suffering from had a mind-body connection.

Evidently a large number of people are able to overcome TMS simply by being aware and fully accepting the fact that there is a mind-body connection rather than focusing on the possibility of structural damage or any actual physical illness (obviously there are enormous disclaimers in anything I’ve ever read on this topic regarding seeking a medical opinion before making this assumption).  Some people however can be totally oblivious to the presence of any such inner rage, like I was which therefore makes it humanly impossible to accept and move on without the help of psychotherapy.

Since I’d tried everything else I concluded I must fall into the latter category and made an appointment to see a psychotherapist.  She told me to write to the people who I felt had contributed to my personal life pressures both past and present.  People who I was angry with, felt guilty about, or felt fearful of and try to link my emotional reaction to these people to my symptoms.  She said to write almost from a child-like standpoint without feeling the need to even attempt to understand the other persons point of view or what circumstances they might be experiencing that would possibly cause them to act in ways that were unacceptable to me.

I thought that since I was accustomed to writing fairly frequently that this would be a relatively simple task and was surprised to find that it wasn’t.  Even though it was being written without any intention of ever sending it to the people concerned, I found myself still trying to please, trying to empathise and adopt the mature, rational, level-headed approach of a non-judgemental adult who can see both sides of the argument.  I found that the only way I could depart from this was to write as if it were a novel.  Treating it as a work of fiction I found I could express it more easily and give this terrified child that I didn’t even know existed, a chance to take centre stage and tell its side of the story.

My daughter who was living with me at the time was away overseas so this was my perfect chance for uninterrupted writing.  And write I did – almost continuously whenever I possibly could for several weeks until I reached a point where I could write no more.  I had to stop.  Not only because my daughter was arriving home the following day but because I had found I simply couldn’t go on re-living all of these grievances.  I had hoped to feel better after this out-pouring of emotional detritus but I didn’t.  Instead I had gone down in a heap and I felt worse, much worse.

The day after my daughter arrived home from overseas my legs gave way completely and I was scarcely able to move either of them.  I had pains shooting down my legs and arms that felt like electric shocks.  I had gone numb around my midriff which had affected my ability to empty my bladder and bowel.  My head was swimming and I felt disoriented and nauseous.  My daughter called an ambulance and I was stretchered out of the house and taken to public hospital and given a comprehensive MRI scan.

Two days before my admission to hospital I had been to my doctor who had diagnosed constipation.  I seldom consult with Doctor Google but I wasn’t convinced with the constipation diagnosis and on this occasion the online diagnosis proved to be more accurate than the human one.  After receiving the results of the MRI and subsequent lumbar puncture it was confirmed that I had primary progressive Multiple Sclerosis.

Although Doctor Google had prepared me for this and I was relieved to finally have the missing piece of the puzzle, the diagnosis presented a puzzle in itself.  As far as I am aware, no-one in my family has had this disease.  It was also surprising to learn that I had an auto-immune disease when I had spent the best part of my life with an almost unnatural immunity to any virulent bug imaginable.

It’s been a year since I was discharged from hospital and going back into ‘the real world’ was a very daunting experience.  For many weeks I was in a wheelchair before progressing to a walking frame and finally to crutches and a stick.  I still have bladder and bowel issues and am often overcome by an overwhelming fatigue and occasionally feel disorientated and spaced out.  I’ve been through many ups and downs in the year that has followed my diagnosis.  Yet for all of that, there have been a lot more ‘ups’ in the year following my diagnosis than there were in the year preceding it.

During the past year I have studied the how diet, sunlight, exercise, genetics and medication can be beneficial in overcoming diseases like MS.  I’ve followed these guidelines up to a point, however after reading nearly everything I could lay my hands on about how our state of mind affects the physical body, particularly in the case of auto-immune disease, I knew that my main focus needed to be on healing my internal sense of self.  Only then would these external physical effects have any chance of improving.

Strangely enough I felt a sense of shame and guilt that I was having any difficulty at all dealing with certain issues because I had allowed myself to be brain-washed into thinking they were my fault alone.  What I had experienced wasn’t too far out of the range of what could be classified as ‘normal human experience’.  Nothing sensational enough to attract media interest or have friends recoil in shock and horror if they were made aware of it.  Even so, we must be vigilant when it comes to unacceptable levels of psychological manipulation as it affects our self-esteem, damages our psyche, invalidates us, and has a negative impact on our life for a long time unless it is effectively dealt with.

MS has taught me to listen to my body because now it literally shouts at me when something is not quite right at an emotional level and I’m starting to get stressed.  I’ve learned to meditate, to take breaks, not try to set myself impossible goals and that I don’t have to be constantly striving for perfection, because I’m never going to reach it anyway.  Because of some of the hardships MS has presented for me, I think it has also taught me to be more understanding and compassionate toward others.

And I’m actually more than a little bit grateful for that.

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Bees in Our Bonnets

Why is that nothing seems to divide our nation more than a General Election?  In the aftermath of our recent 2017 election I am left feeling indescribably sad and not for the reasons that many might think.  It’s not because the party I voted for didn’t win or because it looks as if we’ll have to wait for Winston Peters to make up his mind about his bottom line baubles.  In fact it isn’t anything to do with the parties themselves or their leaders.  Apart from Winston Peters and the pension overpayment which looked to be more an administrative error than the “Mother of all Scandals”, there was nothing like the dirty politics drama we had to put up with during the last election.  The leaders put their points across with passion but at the same time were able to maintain a healthy respect for their counterparts in the opposing corner.  Hats off to them, but not so their supporters.

To listen to or to read online comments from the Left vs Right supporters, one could be forgiven for thinking we have been transported back some 80 odd years to the midst of the Spanish Civil War rather than partaking in a democratic process between two parties: one from the centre right and the other from the centre left.  As much as the dyed in the wool brigade of followers from either side might hate to hear this, there is not exactly a yawning chasm between the two in this country.  However after 57 years of living in a civilised democracy I have never been one of those people who expect a life changing metamorphosis to take place as soon as there is a change of government.  Cue for the aggrieved to launch into a self-righteous whinge about NZ not being a civilised democracy under __________ (insert name of party you don’t support).

It would be an interesting ‘party’ game to take all the policy promises we’ve had during this campaign (and there were plenty!), put them into a hat and prior to their official release,  have Bill and Jacinda draw them at random and earnestly read them out to the voting public.  I can see those from the red corner nodding sagely in agreement if Jacinda were to deliver one of Bill’s contributions whilst the blue corner plunge fathoms deep into a maelstrom of outrage and angst over her lack of experience and understanding.  Each reaction based on nothing more than their own bias which in many cases has been handed down through family for generations, and sometimes without even taking the time to at least listen to or consider any other alternatives.

The media hasn’t helped this and neither has the anonymity of using social media to vent ones spleen and to make sometimes utterly vile and hurtful comments that I would like to think any caring human being would never make in person.  Not all, but the majority of these inflammatory articles have a sensational headline with very little content (some of which is completely false) and are only published to prompt faceless keyboard warriors to respond to something that, aside from the headline, often they’ve quite obviously not read at all.  Yet they are unrelenting in their ego-based comments, all the while making quite clear their need to be right (right as in correct, before anyone jumps in), sometimes in the same breath as talking about compassion and co-operation.  It’s almost funny, but it isn’t.  Is this approach actually going to change anyone’s thinking one jot?  Human nature being what it is I suspect it’s more likely to have completely the reverse effect!  I know it does with me anyway.

There are too many bees under voters bonnets it seems, regardless of whether the bonnet they wear is red or blue.  But like it or not we’re all in this together and I don’t think for one moment that any one of the individuals we have in political office in this country get up in the morning to formulate schemes as to how they can fuck up the country that they and their family live in.  They might have different ideas about how they want to run things and it might not be your way but take a moment to step back and show some respect and understanding for these people … all of them, even if they might not look, smell or act like you.  They may be fat, they may have big teeth, they may be rich or have been on a benefit, they may even make the odd mistake.  In other words … just like us! And like us, they all come from different backgrounds and upbringings but isn’t that the way it should be?  Shouldn’t we celebrate that rather than shriek our disapproval?

I’ve had my rant about why I’m feeling so sad.  Maybe Russell Brand was right about not voting at all because this left/right (perceived) dichotomy divides us somehow.  Shouldn’t this marvellous thing called democracy unite us?  It would be naive to suggest that the best people should take charge of the areas in which they have the most capability and knowledge as it would encompass representatives across nearly all the parties and how would they be selected? So I  guess we’re stuck with waiting for a guy who 92.5% of the voting public didn’t vote for to make up his mind and getting inundated with potential scenarios for a few more weeks to come!

Burning Issues

It has now been four months since that monstrosity of a blister appeared on my left heel and I’m happy to say that the ‘kiwifruit’ has now shrunk to the size of a grain of rice.  I do however occasionally wear the “orrtottic” boots as my heel still has a tingly numbness and a slightly purplish hue that I’m keeping an eye on just in case the kiwifruit decides to return for an encore performance.

The healing of my pressure wound does not however mean that I have given the district nurses any respite from tending my wounds.   I awoke one morning and found to my dismay that I had more blisters, but this time they were on my knees!  For an alarming moment I imagined my entire body becoming covered in inexplicable pressure wounds and spending the remainder of my life surrounded by health professionals earnestly debriding the necrotic and devitalized tissue from my mutilated body. P1030389

And then I remembered the freezing sensation I’d had in my knees the night before and the blissful sensation of the warm hot water bottle.  So delicious that it had sent me off to sleep.  But so hot that my knees, with their reduced sensation due to the MS, were in fact being burned.  It’s taken a while and some TLC but fortunately they are now on the road to healing.  I’ll be glad when I can be bandage free though – as much as I like our district nurses, it’ll be something of a personal breakthrough when I don’t need to have them visit me every other day.

I’ve heard of MS sufferers taking hot dishes out of the oven with their bare hands so I guess it’s all part of the MS learning curve which regrettably I’m at the bottom of … and now I have the scars to prove it.  Note to self to be more mindful of the reduced sensation in my legs and to be more careful in future.

Thankfully the reduced sensation is only from the waist down for me, although I have noticed a numbness in my mouth and that I often have a horrible taste that no amount of peppermints and toothpaste can disguise.  Food just doesn’t hold the same appeal as my sense of taste is only activated by something spicy, like a good curry or a delicious slice of ginger crunch.

And that brings me to that other ‘waist down’ nightmare for MS sufferers – going to the loo.  What a bloody nightmare that is!  There’s none of this “I’ll go now because I’m near a loo and I don’t want to get caught short later” luxury that we all take for granted.  With MS the messages from the brain get lost somehow and you simply can’t pee on demand – straining, pressing on your bladder and doing fake coughs might squeeze out an extra tablespoonful but at the end of the day, when you need to go, you need to go AT ONCE because your bladder has reached critical mass and heaven help the poor sod who gets in your way en route to the toilet.

Which is possibly why the Urodynamics team at Burwood decided it would be a good idea for me to at least learn how to self-catheterise.   I was dreading this.  I was told to be there early on the Monday morning and that it would probably take at least half a day (due to failures) to get the hang of how to do it.  I was also given some antibiotics as there was a high risk of infection.  Brilliant.  Pretty much the last thing I wanted to do was hang around a hospital for half a day failing to self-catheterise myself and eventually emerge with some ghastly urinary infection.  I think I’d opt for the emergency toilet dash over that any day.

Anyway, without going into the intricate details, I totally nailed it in less than fifteen minutes!  A piece of piss you might say.  It’s not something I necessarily need right now but it’s something to add to my ‘skill set’.  I might just pop that on my CV.

The other thing I was asked to do was to keep a diary using the corresponding diagrams provided on the ‘Bristol Stool Chart’.   I’ll spare you the details but suffice to say, the fact that a yardstick such as the Bristol Stool Chart even exists provides such a wicked source of infantile amusement for me, I nearly pissed myself laughing!

A Word (or two) About Income Protection Insurance

You might think ‘that will never happen to me’ but the harsh reality is, sometimes it does.  One day you can be fully functioning and working full time … and the next day you’re not able to.  And unless you have other options up your sleeve, you could find yourself at the mercy of WINZ and their systemised, heartless approach to dealing with people with disabilities.

Thankfully my own WINZ experience was temporary.  Maybe I got sucked in by the TV commercials saturating Australian television promising “peace of mind in times of uncertainty and stress” or possibly I experienced an uncharacteristic attack of astute financial foresight.  Either way, at the age of 51, I decided it would be prudent to take out Income Protection Insurance.

After spending minimal effort on any meaningful research, I selected a broker and duly set about completing the application form.  At the time I was living and working in Australia and although I had no particular health issues, I dismally noted my family’s propensity to various types of cancer and wondered if this was going to be a wholesale waste of money given that any claim incorporating the merest hint of the C word would doubtless be rejected.  Besides that, once you pass the half century mark you’re not likely to come out on the winning side once you’ve had your medical records scrutinized by an enthusiastic assessor pursuing that holy grail of insurance KPIs:  A Pre-existing Condition.

Despite this, I went ahead with the policy and kept it going after I returned to New Zealand permanently in 2013, adjusting the monthly benefit amount so that it was in line with my lower New Zealand earnings.  In fact I had to keep adjusting it on a yearly basis as the insurer was clearly labouring under a misguided fantasy that I was actually fortunate enough to be receiving annual pay increases and their premiums would rise accordingly.  Although they try to advise you not to decrease it, it’s foolish to be paying for more than you’re earning  since you can’t claim more than the loss resulting from the situation and financial evidence of your earnings for the previous year is required at claim time.

In this regard I was somewhat unlucky when claim time came for me after receiving the news in September 2016 that I had multiple sclerosis.  I had been experiencing vague indications of the disease for nearly four years but thought it was just a ‘bad back’ coupled with fatigue associated with menopause.  By June 2015 my symptoms had deteriorated leading me to undergo fairly major spinal surgery after which followed a period of recuperation.  It was during this recovery time that I was made redundant from my position at work, just a year prior to my diagnosis.  As with all standard income protection policies, none cover job redundancy, only disability caused by an accident or illness.  Redundancy Protection could have been added at an additional cost, however the cost was significant and I had just opted for the standard policy.

In October 2015, I had to apply to WINZ for a Jobseeker benefit and what I received on that wasn’t able taken into account as ‘earnings’ when calculating the monthly benefit of my income protection claim.  The closer that Christmas 2015 came, the less likely I was of securing employment other than a small amount of temporary and contract work, and it wasn’t until February 2016 that I finally secured a full time position.  This meant that my earnings for the 12 months prior to my disability were down by nearly four months’ worth of full time earnings, which in turn meant that my income protection claim would be adjusted accordingly.

On the extremely fortunate side of the equation though, I had fortuitously and without knowledge aforethought, chosen AIA as my insurer.  AIA cover multiple sclerosis in their income protection policy whereas many insurers will not.  I have absolutely no family history of multiple sclerosis and nor was I experiencing any symptoms at the time of taking out my policy, so I certainly wasn’t investigating the ‘MS friendly’ insurers.  I can only assume that the lack of cover for Multiple Sclerosis is that it generally affects people over a long period of time and for people with the relapsing/remitting variety, its symptoms can be sporadic.

There was also yet another potential fish hook with this policy.  I had taken out the income protection cover in 2011 when I was living and working in Australia and intending to live there permanently.   When I was living in Australia (like all New Zealand migrants), I had a temporary visa or special category visa unique to New Zealand citizens therefore, although I could live in Australia indefinitely, I didn’t have permanent resident status.  For some income protection insurers, having permanent residency is a must in the event of a claim so that even if I were still living in Australia, I would still not be able to claim (as many New Zealanders have found to their cost).  Again, by sheer good fortune and without my having done any advanced research, AIA claims are not dependent on this.

In the face of my negative expectation that I would meet the criteria required to qualify for a cracker out of this income protection policy, I contacted my broker in Australia who turned out to be incredibly helpful.  I duly filled out the multitudinous forms, complete with financial statements and lists of doctors, specialists etc that I’d visited over the past three years.  The final lodgement form comprised nearly fifty pages of information relating to my claim.  It would almost be enough to put some people off claiming altogether, particularly those coping with a distressing diagnosis that may affect their cognitive abilities.  Having said that, it was a huge improvement on the rigmarole you have to go through with WINZ and for a much less generous reward.

As with most income protection policies, there is a waiting period, the length of which is normally determined by the amount of monthly premium you’re willing to pay. In my case, I had a period of four months where I had to rely on a WINZ benefit supplemented by some fairly sporadic work, which again was over the Christmas/New Year period, so needless to say it wasn’t much.

The New Year brought mixed blessings.  I had developed a pressure wound on the heel of my foot which had exacerbated my MS symptoms and affected my mobility to the extent where I had now come to the realisation that I was going to have to move house.  There were slippery slopes and accessibility issues where I was living, however it was cheaper than anything else I was likely to get and there are always costs associated with moving.

The story does however have a fortunate ending.  Just prior to my admission to Burwood Hospital where I spent eight days in respite/recovery for the pressure wound in early February 2017, I received the news from AIA that my claim for partial disability had been approved.  Whilst I was in hospital, work from my amazing and very understanding employers had increased and the day I was discharged from hospital, I viewed a property that was perfect for my needs.  My wonderful friends helped me to move house and a couple of weeks after my discharge I was assessed for driving and passed with flying colours.  But best of all, I was at last able to kick WINZ into touch.

Don’t get me wrong, it’s not the people at WINZ, they were always compassionate and helpful, it was that whole inhumane bureaucracy behind the WINZ machine that I found so depressing.   Always sending totally inappropriate computer generated letters to people with disabilities who can’t possibly comply with their demands and always over you like a rash whenever your earnings slightly exceeded their weekly Jobseeker benefit amount, even though you were never a ‘Jobseeker’ in the first place.

Surely it must be possible to filter a database so that people with genuine disabilities don’t receive this never-ending stream of inappropriate and distressing correspondence?  It wasn’t as though I’d made a ‘lifestyle choice’ to go on a benefit.  Why would I?  After rent and direct expenses relating to my disability were deducted, I was left with $45.00 a week for food, electricity, phone etc.  That’s a fiscally fraught juggling act even when you’re not disabled.

I’ve got to admit that there were times, particularly after my redundancy when I struggled to pay some of those premiums but I’m so glad now that I did.  I urge everyone to think seriously about getting income protection insurance … I was lucky but best to do your research first.

Yahoo!!

Today has been the sort of day that must have come from hell
I made a call to Telecom and have a tale to tell
It started when I checked my mail by electronic means
To my surprise, before my eyes was spam in the extreme!

A large appendage most proclaimed, would start my life anew
But they forgot to let me know who it was attached to
A Russian bride might be alright to carry out the chores
But personally I’d rather see Dan Carter in his drawers

And so a call to Telecom I had to make in haste
To stop the spam became my plan with no time left to waste
Voice activated answer phones are never that effective
So when I shouted “Oh, fuck off”, it mis-heard my directive

A further wait was not my aim, though this was the result
But I was told to stay on hold while they repaired the fault
Many hours later I eventually got through
To someone smart who said “Take heart, the problem’s not with you”

Imagine my excitement to learn I’m in the clear
Yahoo Bubble caused all the trouble – “Not your fault, my dear!”
It seems that all the issues came when they took off the filter
Blocking spam which caused the jam that put things out of kilter

Yahoo we’ve Xtra spam! But I’m too busy for hysteria
Investing all my money with that nice man in Nigeria