Burning Issues

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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

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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.

The Biggest Blister

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Apart from a few minor indiscretions adhering to the Overcoming MS diet over the Christmas period, I was coming along pretty nicely and embraced the arrival of 2017 confident that surely this had to be a better year than 2016 had been.  I still used the walking frame occasionally but had begun to use my crutches more and could now walk up and down the slope that led to my home without having to use either for support.  I had also started to do some yoga and although I was nowhere near as supple as I was before I had the spinal surgery, I was surprised at how much I could still do.  The warmer days meant that I could lie out in the sun and get the recommended Vitamin D quota and on one particularly sunny day Kate had taken me to Purau for a swim in the sea which was heavenly.  The weightless feeling of being in the cool, salty water with the sun beating down on me was pure bliss.  If only I could drive my car, I could come down regularly as Purau is only a short drive from my home.

I was excited at the prospect of driving the car again as this had the potential for me to regain my lost independence and also enable me to take on some more work so that I could say goodbye to WINZ with their miserable benefit and endless computer generated letters.  Unfortunately there were still some hurdles to go through as I was on a six month waiting list for assessment, although there was a glimmer of hope that it might be sooner as I needed it for work.  Apart from the fact that I still didn’t know whether I would be able to claim on my Income Protection insurance (despite filling out their myriad of forms and sending countless doctors reports), things were coming along fairly nicely.  Then, just one week into 2017, I had an unwelcome visitor.

It appeared out of nowhere the day after I went swimming and I’m still scratching my head as to how or why it came into existence at all but the moment my left foot touched the floor on the morning of B-Day (Saturday 07 January), I knew that something wasn’t right.  My heel hurt and on closer inspection it was sort of spongy as though I was maybe getting a blister.   I carefully tiptoed around on it all day and come the evening there were no maybes about it.  The thing was huge – like a giant water blister.  Not knowing whether one should pop it and risk a tidal wave of potentially infectious fluid or leave it to its own devices, I checked with Dr Google thinking this could possibly be some fairly common MS related phenomena.  No such luck so I phoned the Healthline Nurse.

“Is it bigger than a pea?” she asked after taking down the details of my complaint.

“Um, yes it’s quite a lot bigger than a pea,” I replied, wondering what sort of blathering hypochondriac would call an after hours help line for a blister the size of a pea.

“Tell her it’s bigger than a fucking kiwifruit,” interjected Kate, colourfully and accurately maintaining the fruit and vegetable analogy.

“Oh my goodness, is it really that big?” came the response accompanied by no real advice on how to deal with it other than to wait until Monday and see my doctor.

On Monday morning the kiwifruit and I went to see the doctor.  It was drained and I was given antibiotics.  The following day it had filled itself back up to its full magnificence and it felt weird.  Any minor pressure would set off a sensation through my leg like an electric shock whilst the other leg felt weak and useless.  Walking was becoming increasingly difficult as the damn thing seemed to trigger all my MS symptoms.   After a week of it I was starting to feel a bit beside myself.  The inflated kiwifruit felt hot enough to have reached boiling point and it hurt like hell.  I lay on the couch with a bag of frozen peas on my engorged heel and then it happened.  It burst of its own accord.  Sort of everywhere really – but unfortunately the relief was short-lived.  In the days that followed the ‘blister explosion’ it became obvious that underneath the fluid of the blister there was a dark area.  It seemed what I actually had was a pressure wound.

Anyone who has ever had any experience with pressure wounds will know that they are not known for their capacity to heal quickly and easily.  And for me having MS added another dimension to the problem.  I wanted to try to understand why I had got this in the first place and why it was having such a profoundly detrimental effect on my MS symptoms.  And that is how I ended up in the A&E department of our public hospital.

We went on a Monday morning, just three weeks after B-Day.  I don’t really know what I was hoping for but at least to be seen by someone who may have more than a passing knowledge of MS and someone who might understand why walking on tiptoes with my left foot whilst coping with deteriorating MS symptoms was becoming such a huge issue for me.  I was worried that this represented some sort of relapse.  I was taken through fairly quickly and the bandage was removed at around 10:00am.  I was seen by a young doctor and later an orthotic specialist who was going to try and organise an orthotic boot for me.

At 4:00pm after hanging around for most of the day with an open and weeping sore (which I thought was a bit odd given I was walking around in a hospital), the wound was finally dressed and the boot appeared.  It was made of hard plastic, almost like a ski boot, and was about two sizes too big for me.  I could see the idea behind it – there was an insole that had a piece cut out so that the pressure was relieved from the heel but that part was too small and I think I would’ve ended up with more pressure wounds just from walking around in such ill-fitting footwear.

A day later I was visited at home by the physio team who arranged another orthotic boot but this was also a hard plastic affair which was raised but had no heel.  The disadvantage of it was unless you were wearing another boot of similar height on the other foot you were just as unbalanced as if you were walking on tiptoes.  I am fortunate to live in an area that has an excellent team of District Nurses and we also boast a leading wound specialist in our neighbourhood, so the level of care I have received during this blister ordeal has been outstanding.  In spite of this though I was still walking so unevenly lest I put pressure on the wound, and if I didn’t walk at all my foot swelled up until it felt like it would explode. The whole orthotic boot idea had been something of a disaster so I was just wearing a slipper on it until the wound specialist suggested a softer boot which looked far superior to these other diabolical contraptions.

In the short time that I have known I have MS, I have learned that it can manifest some pretty peculiar sensations and symptoms which are often unique to the individual experiencing them.  And the way my body reacts now is certainly very different to what I’ve been used to for the past 50 something years.  It’s difficult to explain this to someone who doesn’t have MS and even fellow MS sufferers I’ve met are experiencing their symptoms quite differently to the way I am.  One of the more peculiar sensations I had during this time was that whenever the nurses made any attempt to cut away the dead skin on the pressure wound, my entire leg would feel like it had been immersed in a bucket of ice.  I could have sworn that my leg would feel icy cold to the touch but it was as warm as toast when I touched it with my hand.  Whilst I like the idea of having ‘sensational legs’, that is not quite what I was hoping for!  It also had the effect of making me feel quite nauseous and tired.

It was exactly one month after B-Day and whilst I was waiting for this boot to arrive that I had an appointment with the doctor who had seen me when I was in the Brain Injury ward at Burwood Hospital after my diagnosis in September last year.  On this particular day I was feeling especially lousy.  Kate was going away for a long weekend and had put a lineful of washing out.  Half an hour before I was due to leave I could see that rain was threatening and it was going to get wet unless I rescued it.  After that my friend Fiona came to pick me up to take me to the appointment at Burwood so I had an hour long drive in the car, then I went to the wrong place and had to walk with my frame to another area of the hospital.  By the time I got to see the doctor my foot had swollen up like a balloon and I felt like I couldn’t walk another step without my legs completely buckling underneath me.

On seeing my distress, and more concerned about the effect the wound was having on my MS rather than the wound itself, the doctor admitted me to Burwood.  For me this was a welcome relief as when one is at home there is always plenty to be done and particularly with Kate going away.  I really cannot praise that excellent facility enough.  Seeing the nurses, physios, occupational therapists and the rest of the rehab team was like catching up with old friends again and all were amazed with my progress since my discharge last year, even though I personally felt as though I’d declined due to the wound.

As my blood sugar and protein levels were low, I decided to shelve the diet at least until the wound had healed.  I was also starting to notice that I continually had a horrible taste in my mouth which felt slightly numb and so the food I was having had lost all its attraction.  I was probably not being creative and adventurous enough with it and the diet had made me feel as though I was in danger of turning into an oily fish soaked in flaxseed.  This coupled with the metallic, peppery taste that I’d developed had turned me right off the whole thing.  So much so, that I embraced the hospital fare with great enthusiasm, although I was still determined to eat sensibly and healthily.

Once in hospital, I made good progress.  The first thing that was sorted out was the boot situation.  I had a lovely Irish physio who arranged two ‘orrtottic’ boots (as he called them) – a soft boot for sleeping and resting and another sheepskin one which kept the pressure off the heel for walking.  If I’d have known at the onset of this that I’d end up with four new boots I’d have been quite excited at the prospect, however orrtottic boots unfortunately aren’t renowned for their stylish elegance.

TREE OF MY ORRTOTTIC BOOTS

Tree of my ‘Orrtottic’ Boots

I also got an appointment to see a neurologist whilst I was in hospital.  This was interesting for me because, aside from having a visit from the neurology team when I was originally diagnosed in public hospital, I hadn’t yet seen a neurologist to discuss my case.  He showed me the MRI images and I was surprised, and very pleased, to learn that I only have one lesion on my spine and one very small, almost unnoticeable, one on my brain.  He had a student present at the time and went on to examine me for sensation, muscle strength etc.  These were as they have always been – everything fine above the waist but weak on the right side with lesser sensation on the left.

“And that is a classic sign of …?” he asked the student who clearly had no more clue than I did of what that combination might possibly signal.

“… Brown-Sequard Syndrome”, he replied in response to his own question.

I didn’t ask too much about this syndrome, thinking it was probably some bog-standard condition common amongst MS suffers but made a mental note to check it out later.  I won’t drone on with the details here but from what I can gather, it isn’t that common and can sometimes occur due to a spinal cord injury, or in my case, as a result of MS.  The thing that I found interesting was that, amongst other things, one of the possible complications following the occurrence of the syndrome is … pressure ulcers.  I returned home after spending eight days in hospital and although the dark scab covering the wound was still hanging in there and it was still very painful, I was much improved.

Thanks to the professional and caring district nursing staff who visited my home daily to inspect and dress the wound, it is now looking more like a deep graze than a pressure wound.  It’s been nearly three months since B-Day when it first appeared and although the nursing staff are amazed at how rapidly it is healing, for me it seems as though I’ve had this thing forever and I suspect it’ll be a number of weeks yet before I can ditch the bandages and confidently state that it’s healed.

Thankfully I am back to being able to walk on crutches and occasionally unaided.  But the best news is that I passed my driving assessment so I’m now getting back to part-time work and the independence is bringing me some semblance of normality.  It’s a new ‘normality’, a new reality with mysterious new challenges and changed expectations but I at least feel like I’m part of the way on my journey back to the real world!

A WEEK OF IT

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The title of this post might suggest that I’ve been away on an IT course for a week and whilst that prospect doesn’t fill me with uncontained excitement, it would be infinitely better than the ‘IT’ that I’m referring to. This ‘IT’ should really have an SH in front it …

 

Saturday 14th January

The blister that mysteriously appeared on the heel of my foot last Saturday is now about the size of a kiwifruit.  If it gets any bigger it will need its own passport.  This must be some weird MS related outburst as I’ve never had anything like this before.  It’s something I might expect if I’d done a week-long tramp in ill-fitting footwear.  Needless to say, I’ve done nothing of the sort.  It’s like a huge water blister and underneath the fluid I can see a dark red patch which, to stick with the fruit analogy, I would say would be about the size of a cherry plum and about the same colour.  I went to the doctors last week and they gave me antibiotics and tried to drain it but the damned thing just filled right on up again.  I don’t think this is a ‘normal’ blister and it’s playing havoc with my MS symptoms, possibly because I’m having to tiptoe on my left blistered foot while my right leg (which is the weaker of the two) is bravely trying to bear the majority of my weight.

By the evening my hips were stiff and sore, my left leg had gone completely numb, the kiwifruit felt as though it was close to boiling point and my right leg was as weak as water and just about ready to completely collapse.  I laid down, kept the blistered foot up and stuck a bag of frozen peas on it.   About an hour later to my immense relief, the bloody thing burst of its own accord.  I now have the suppurating remains of the kiwifruit to contend with and under the flapping skin, a squashed cherry plum which hurts like hell and I still can’t put any weight on it.

Monday 16th January

My daughter took my car to town today.  She’s going to drop it in to the specialist VW mechanics for the repairs that need to be done before I can get a Warrant of Fitness.  I’m really looking forward to being able to drive again and have some independence but I’m on a waiting list for a disability assessment.  Evidently these waiting lists can take six months but they’re hoping that mine might be considered more urgent as it will enable me to drive to work.  We have access to public transport here but it involves taking a ferry which has no disabled facilities at this end, although there are at its destination, which would be kind of annoying if you didn’t know this and were making the journey the other way around.  Anyway, I just hope I’m over this blister problem before my assessment comes up because I think I’d struggle to pass at the moment.

The doctor phoned and I need to go in and show them my now burst blister which is weeping all over the place.  Getting ready for my appointment when Katie texts with bad news.  About a week ago a tree blew over in the driveway and it was sort of shuffled out of the way to clear the driveway but Katie had forgotten it was still hiding in there and backed into it.  When you’re not used to driving a VW Beetle, the fenders tend to stick out more than you expect and she’s dented the right hand side and taken some of the paintwork off.  Bugger.

Blister seems OK and is re-dressed.  Phoned the mechanics later in the day to see when my daughter can collect the car.  Receptionist there tells me she hasn’t phoned earlier as this is her first day back after being away on maternity leave for eight months.  There is no way Katie can pick the car up today because the job is going to be ‘very big and very expensive’.  This is exactly what I don’t need to hear right now.  I ask her to phone me back to let me know exactly what I can expect as her statement of doom has left me in a state of angst and apprehension.  I spend a dismal afternoon imagining myself making a disheartening effort to pay a bill well into the thousands on a WINZ benefit.  I finally get through to the VW repair place after several attempts throughout the afternoon only to get a recap on the ‘madhouse after the eight month maternity leave’ situation and a ballpark estimate that the parts alone could be anywhere between seventy and a thousand dollars.  If all this ‘busyness’ is due to a surplus of customers, I am confident this woman will be capable of single-handedly remedying that situation in fairly short order.  My blister hurts, my legs don’t work and now my car is dented and damaged and I have no idea how much it’s going to cost to get fixed.  I have another letter from WINZ but I’m not in the mood to try to decide whether it’s one to ignore or action so I leave it unopened.

Tuesday 17th January

I decide that leaving my car in the hands of someone who can only forecast lengthy delays and large expense without backing it up with some facts and figures is naïveté to the point of foolishness.   Furthermore if I have to listen one more time about this woman’s problems due to taking maternity leave, I will feel compelled to give her a blow by blow account of my own.  My daughter knows of someone who works at Pitstop and they seem much more helpful and communicative but before she could pick up my car  their ‘helpful’ receptionist made her pay $97.75 just to remove it from the yard.   I write an email to the Manager in the hope that I might at least be able to recover this amount as they’re normally very good and have never had this trouble before but I never get a response so I won’t be going there again!

Blister is really shit.  I hope this isn’t a relapse – what with this blister and the stress I wouldn’t be surprised but I try not to even think of that possibility.

Wednesday 18th January

Blister is still weeping and sore and it seems to impact on the MS symptoms with every day that goes by but I’m not sure what to do about it.  I try lying down with my foot up as I’m feeling really buggered.  There is a really lively rodent running around in the walls of the house and the action seems to begin just as I’m about to drop off to sleep.  In fact I suspect it might be rodents (pl.).  I put out some rat bait, hopeful this will put a stop to their nocturnal shenanigans.  I walked up the slope to the driveway today which was very difficult.  I think I’m going to have to move house as walking up that slope in the wintertime is going to be a challenging undertaking once the rain and frost really set in.  I find the thought of moving exhausting and I don’t want to but suffice to say that at this stage I think this place is going to become too hazardous for me.  On the bright side, the WINZ letter was one of the ignorable computer generated variety (at least I think so).

Friday 20th January

I was able to get a cleaner through Life Links who in turn go through Access who in turn got me someone who services the area to come every Friday morning at 9:00am.  I have one hour and forty-five minutes allocated to me.  In some ways it’s a bit of a double edged sword as it means I have to get up early to get showered, dressed and breakfasted in order to tidy up a bit before she arrives.  This sounds easy but when you have MS along with a blistered foot that needs dressing, successfully meeting the 9:00am deadline is quite an achievement.   Furthermore I suspect the cleaner may have her own disability issues and it would be an understatement to say that she isn’t particularly efficient.  However I doubt she’s earning much more than the minimum wage so I probably can’t expect too much.

Today however I didn’t need to rush as she didn’t materialise until 9:45 and announced that she would have to change her hours as Access had altered her timetable and she had another job before and after mine which meant that in future I would only be getting just under an hour of my allocated time.  I phone Access to ask why my allocation had been cut down and get hold of their call centre.  Evidently they hadn’t altered her timetable at all and when they spoke to the cleaner about it she said that it was because she had completed everything she was required to do.  When I spoke to the call centre again I said that this was definitely not the case and I was being told it was because of them changing her schedule.  I didn’t seem to be able to get it through to Access that she hadn’t done everything that was authorised on their list and if they hadn’t altered her timetable, what this cleaner was actually telling me was in fact, a lie.  This was met with a somewhat patronising tone that the cleaner had done everything on the list and was therefore entitled to cut down her hours.  I got nowhere – clearly Access was happy to take the cleaners word for it but not mine.

Just before the cleaner left I asked her again why she was cutting down her hours and again she told me it was because of Access messing around with her timetable, but this time I hit the voice recorder button.  I phoned the local coordinator and explained what had happened and although she was a lot more helpful than the call centre, I cancelled the cleaning service.  I was all set to go through their complaints process, however when I thought about it, what would anyone have to gain by this?  It seemed like she’s the only one servicing our area and if she lost her job I doubt she’d get another one very easily and it would just be another poor soul floundering around in the WINZ system.  Even though she’d lied to me, it wasn’t really her I was upset with.  It was that woman at the call centre who would probably come out it unscathed.

So I leave it at that and concentrate on completing yet another form from my insurance company.  If I can only get this income protection claim approved I can get the hell out of this crazy system so I focus on that happy thought instead.

Saturday 21st January

It’s still Friday in the USA and Donald Trump gets inaugurated as the 45th President of the United States.  God help us all.

 

Forms, Forms and More Forms

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I don’t think I’ve ever filled out so many forms in such a short space of time in my entire life.  Even without taking into account the absurd volume of written material required by WINZ, it seems that once you have a disability almost everyone you deal with requires you to produce an extraordinary amount of documentation.  Since failure to complete these forms means that you would be unable to access essential support services and entitlements, it’s a necessary yet utterly exhausting process, and not just for the person witdh the disability.  I’m certain my doctor has the urge to run for cover every time I send yet another form for him to complete.  And once the form is correctly completed, it would be foolish to think that your work is done.  Then you have to provide supporting documentation, medical reports, proof of identity, and so it goes on.  You may even need to get a Justice of the Peace involved.

The supreme award for the most gruelling, time-consuming form that required the greatest volume of supporting documentation, would have to go to my insurance company.  I have an income protection policy that I took out when I was living in Australia and have been paying into for some time now.  Since there is a waiting period involved, I at least had a reasonable amount of time to complete the forty five page masterpiece which once received was followed up by a fresh set of forms for me to complete.  It is still going through their exhaustive assessment process.  I just hope that after all the time, effort, and not to mention premiums, I have invested in it, it gets approved.  At least then I can escape the madness of these out of control, computer generated WINZ forms and letters.  Fingers crossed.

Improving Life with Multiple Sclerosis

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Using the small windows of opportunity available to me when I’m not dealing with WINZ correspondence or sitting on the loo earnestly trying to produce more than a tablespoonful, I’ve been doing a bit of MS research of my own online.  I managed to stumble across an excellent website called Improving Life with Multiple Sclerosis.

Developed by Professor George Jelinek @georgejelinek, the well-researched Overcoming Multiple Sclerosis program of diet, exercise, stress management, sunlight, vitamin D and omega-3 supplementation, and medication (if needed), offers hope and cites case studies of positive outcomes for people with MS.  Plus his whole approach just seems to make bloody good sense.  I figure I’ve got nothing to lose except a few kilograms, so I’ve ordered the book Overcoming Multiple Sclerosis online and also the OMS recipe book, although that isn’t due for distribution until early next year.

I’ve always considered myself to be a reasonably healthy eater – I don’t eat a lot of fast food and am more likely to make things from scratch myself rather than buy a lot of processed stuff anyway.  The big nasties to avoid appear to be dairy products and saturated fats, which means no meat, no eggs and worst of all – no cheese!  Alcohol is OK thank God, otherwise I’d have been out of that website faster than you can say Unoaked Chardonnay.  I think my biggest problem is going to be cutting out dairy products which is something I’d always considered in dietary terms to be a good thing.  I’d bought into all the propaganda that it was good stuff for your bones and helped prevent osteoporosis.  I like nothing more than organic milk, eggs and CHEESE!  How will I cope without my beloved cheese – Castello, Double Brie, Camembert, or even just your standard block of Colby?  Or a baked potato with a dollop of butter smeared and a generous coating of sour cream?  What about my Sunday morning streaky bacon with my perfectly cooked scrambled eggs on toast?  Plus I make an award winning bacon and egg pie … and quiche!  But I digress … stick to the program Claire.

I’m not exactly flush with cash at present so I’m not really in a position to ditch all the food I’ve got and start completely again.  The dairy products can be demolished by my daughter but there’s a pork roast that I doubt she’d get through unassisted, a whole chicken and couple of other meaty numbers in the freezer that might require my assistance.  Oh yes, and there does happen to be a kilogram of Manuka smoked streaky bacon that I sincerely wish I’d spotted prior to discovering the OMS website.  I’m also a bit concerned about Christmas – there’s bound to be dodgy food floating around in abundance but I’m determined to be as clean as I possibly can.  Processed meats are out and if there’s fish, I’ll be having that but I don’t want to get too pedantic about it and make everyone feel nervous about feeding me.  I know this isn’t recommended – a bit like the puppy that is not just for Christmas, it’s for life.  Which is a bit like MS when you think about it.

I am however much improved since I was discharged from hospital.  I still need the wheelchair occasionally but mostly get around using my walking frame.  There is quite a steep slope down to my house which I was unable to manage until I got a walking frame with brakes but I’m pleased to say that I can now get up and down the slope just using crutches – as long as it isn’t raining or the neighbours haven’t thoughtfully trained their garden sprinkler on my walkway.

I went to back to Burwood this week to see the doctor and progress is good, although when I mentioned the WINZ problems I’d been having she put me on anti-depressants.  I suspect this is probably standard issue for patients having to deal with WINZ but to be honest, I felt more doo-lally when I was taking them, so I’ve given them a miss.  The best thing though was having an hour long session in the Burwood Hospital indoor swimming pool.  The feeling of weightlessness was amazing and it was as though I had no disability whatsoever once I was immersed in the water.  This is something that needs to be remembered however when you get out of the pool only to find you’re back in the land of the disabled – it’s a little like a scene from Cocoon!

The Unfathomable World of WINZ

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I want to make it abundantly clear that I have no wish to criticise the case workers and telephone support staff that I have dealt with personally over the past two months.  Without exception I have found them to be friendly, helpful and empathetic.  The problem is that they are dealing with vulnerable and sometimes desperate people with a wide range of needs that don’t always fit the flawed ‘one size fits all’ structure of the institution they work within.  I am of course, talking about WINZ (Work and Income New Zealand).

Prior to being hospitalised and later diagnosed with multiple sclerosis in September this year, I’d had little to do with WINZ.  I was briefly on a Jobseeker benefit after being made redundant toward the end of last year but aside from the ignominy of going cap in hand to WINZ feeling like a dole bludger, it turned out to be a relatively straight-forward experience and in the new year I’d found temporary full-time employment and moved on.

Unfortunately with WINZ, as soon as a disability is factored into the equation a whole raft of exhausting paperwork materialises that is made exasperatingly worse because you have … a disability. My hospital social worker was an enormous help in completing the voluminous paperwork required to access my ‘entitlements’.  I would’ve lost the will to live if I’d had to navigate through all that alone.  After four weeks of being hospitalised I returned home in a wheelchair, hopeful I would come to terms with this life-changing diagnosis and be able to concentrate on recovering to a point where I could eventually do a few hours work from home so I wouldn’t be fully reliant on a disability benefit.

The day after I was discharged from hospital I received my first Jobseeker Support payment from WINZ along with a letter saying they had determined I had two weeks before I needed to attend courses, work assessments and make myself available for work.  No mention of my disability or advice on how to get to any of these interviews or courses was forthcoming.  I was totally housebound.  I was no longer able to drive my car and I live nearly an hour out of town without access to public transport with disabled facilities.  Furthermore, I didn’t feel confident that two weeks would be sufficient time to rid myself of the overwhelming exhaustion that is part and parcel of MS and become a “Jobseeker” when the simple act of taking a shower took half the morning to accomplish.

The next correspondence I had from WINZ was a photocopy of one page of my Disability Certificate.  The YES/NO box that said “Does this person have a disability that meets the Disability Allowance criteria” hadn’t been ticked even though the rest of the form gave full details and a Work & Income Work Capacity Certificate had been submitted a month earlier ticked, signed and completed by the hospital saying “poor mobility, bowel & bladder control, fatigue and pain associated with multiple sclerosis”.  Unable to comply with their request to return the form in person with the now ticked box, I phoned to get a postal or email address.  This wasn’t possible.  I had to fax it.  I managed to find someone still using 1990’s technology and faxed if off hoping it hadn’t been reproduced on thermal paper and wasn’t quietly deteriorating to a yellowed state in the corner of some WINZ outpost.  I phoned to make sure they’d received it but was told it would take a few days to process.

The following day I received another letter from WINZ … “We understand you were admitted to hospital.  Please phone us immediately.  Unless you have ongoing costs that you can’t meet, your income support will reduce to $43.45 per week from 30 December.”  Aside from homeless individuals who might find themselves unfortunate enough to end up in hospital, who would fall into this category?  Most people I met in hospital had homes they were either paying rent or a mortgage for, the cost of which would be ongoing regardless of whether they’d been admitted to hospital.  Quite apart from the fact that WINZ must have known I wasn’t still in hospital as I’d spoken to them on the phone, why send out a letter that must apply to only a very small percentage of the population?  I phoned WINZ again and was told to ignore this letter.  I was starting to dread these communiqués from WINZ as it was adding to my stress and there was still no mention of my disability.

On the bright side, I was starting to feel a bit more confident and was learning to cope with my new disability.  I still had mobility and fatigue issues but had started to do a few hours work for my previous employer who have been amazingly supportive throughout my ordeal.  I declared this income to WINZ which was pretty meagre as I couldn’t do much in the way of hours but at least it was a step in the right direction.  I received an online letter from WINZ within hours.  My Jobseeker support had been suspended and I owed WINZ money.  I’d anticipated this and repaid a portion of what they thought I owed but I was still waiting for a resolution on the disability allowances I was due yet had heard nothing whatsoever about.

I contacted the hospital social worker and she was able to put someone from WINZ in touch with me from Auckland – due to the Kaikoura earthquake she wasn’t based in Christchurch, as they were terribly behind with their paperwork which was why my faxed form with the ticked disability box on it hadn’t been processed.  Furthermore it now couldn’t be processed because my benefit had been suspended due to my previous earnings declarations being slightly over the Jobseeker allowance!

In an effort to put my current position into perspective I read Angela’s Ashes from cover to cover and listened to the recently departed Leonard Cohen.

It’s strange how the Kaikoura earthquake can cause a three week delay processing my disability certificate, yet an online declaration of earnings can trigger an overnight letter in a heartbeat.  My Jobseeker Support had been restarted but Temporary Additional Support had stopped and deductions had been made to repay my debt.  No mention of disability, just a reminder that I owed the full amount without the repayment I’d made a week earlier deducted.  The letter ended with a spiel about attending interviews and courses and that l must accept any suitable job offer of work for at least 30 hours a week and provide evidence to WINZ of what I’m doing towards this.  There were even helpful suggestions about contacting employers in my area and visiting employment agencies.

By this stage I wasn’t only feeling depressed, I was angry.  I’m sure I’m not the first person who has just had their life turned upside down with a distressing diagnosis only to find they have to put up with this sort of stressful and inappropriate correspondence.  I phoned WINZ and was told to ignore the letter as it was computer generated and my disability allowances would be investigated and actioned.  I’m happy to say that this finally came to pass but not without a considerable amount of angst.  I feel desperately sorry for anyone in this position who may have a more upsetting and debilitating condition than I do and who might be less capable than me of dealing with this sort of inane crap.

I also feel sorry for the staff at WINZ because their dysfunctional system pushes people to levels of frustration that put them in the firing line for all kinds of abuse that isn’t necessarily their fault.  Why is there not such a thing as a Sickness Benefit?  And why do I have to keep sending off Medical Certificates every three months when I have an incurable disease – do WINZ know something about a forthcoming cure for MS that no-one else does?  Why must they treat people with genuine disabilities as full time ‘Jobseekers’ when they are physically and mentally incapable of pursuing that course of action.  Not only is it intimidating, it’s inhumane.

Furthermore, it would go a long way to preserving the mental wellbeing of this vulnerable group if we weren’t being constantly overwhelmed with a tsunami of irrelevant system-generated correspondence.  Perhaps WINZ should publish the Beginners Guide to Identifying Correspondence One Can Safely Ignore as it’s impossible to know when when to take it seriously and head for higher ground.

People with disabilities haven’t deliberately made some sort of lifestyle choice.  Most have paid their taxes and like me, have struck a hurdle and only want to pay their rent and put food on the table.  Let’s face it, no-one in their right mind would willingly choose to get caught up in the peculiarities of this unfathomable system.

MS: My Invisible Journey

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My ‘invisible’ journey began four years ago.  It was the beginning of a baffling, frustrating and extremely expensive period of my life that became increasingly dominated by a mysterious health issue.   I had previously been extremely fortunate with my health and had hardly even suffered so much as a cold.  That is until I turned 53 and hit menopause which is when the problems began.  Severe and regular hot flushes and overwhelming tiredness were bad enough but I had also developed a peculiar problem which seemed to emanate from a trapped nerve in my left buttock causing weakness in my right leg.  It got to a stage where walking was becoming an increasing effort and other muscles that were compensating for the weakness became over-strained and sore.  Although I was still functioning reasonably normally and holding down a responsible full-time job, most of the time I felt exhausted, disorientated and totally out of alignment, both physically and mentally.

I was living in Australia at the time and, determined to get to the bottom of the problem, I visited a host of medical professionals most of whom were every bit as mystified as I was.  Some I’m sure thought I was just experiencing some imaginary menopausal fantasy and that I was making the whole thing up, although why I’d want to do this I have no idea.  I had an MRI scan, a cortisone injection, two x-rays, a nerve conduction study, and an ultra-sound.  Apart from ‘normal degeneration for my age’ everything appeared to be in good working order … except my bank account.

By mid-2013 I decided to leave Australia and return to New Zealand while I was still physically able to go through the drama of packing everything up and shipping it back to New Zealand … and while I could still afford it as I was fast becoming in danger of spending everything I owned on medical bills and ineffectual remedies.  Once back in New Zealand, I had another MRI scan of my lower spine which revealed nothing more startling than the one I’d had in Australia so I became stuck yet again in a fruitless round of physiotherapy sessions, chiropractic manipulations and the like.  Friends and family understood that I had some sort of undiagnosed back problem, but for most people meeting me for the first time the only clue that there might be something wrong was a slight limp and the fact that I very occasionally used a stick if I had to do a lot of walking.

Inside though, I felt ghastly.  The leg weakness was still bothersome and although I wasn’t in a huge amount of pain, I’d get a lot of cramps and pins and needles.  Plus I would often become overwhelmed by an uncontrollable urge to fall asleep at the most inconvenient times but I just assumed that this was simply part of the whole nightmare associated with the dreaded menopause.

Life ticked on pretty much as usual until mid-2015 when my doctor gave me a referral to a neuro-surgeon who ordered yet another MRI which revealed that I had a condition known as spondylolisthesis.  At last I had a diagnosis and the good news for me was that it could be remedied with surgery!  I couldn’t get it done fast enough.  Filled with hope that I was finally going to get some relief from my symptoms I underwent four hours of surgery which incorporated a spinal fusion, laminectomy and a decompression.  I waited in hopeful expectation for nearly a year afterwards but eventually had to conclude that the surgery had done absolutely nothing.   My symptoms were neither relieved nor worsened by the surgery and whilst I don’t doubt the existence of the condition that was diagnosed, I was firmly back at square one.

By this time I was starting to suspect that the problem might be psychosomatic.  I’m (thankfully) not prone to depression but thought that perhaps menopause might have caused some sort of mental imbalance that could have thrown up some past issues from my subconscious that might be contributing to my symptoms.  Figuring it couldn’t do any harm to at least investigate the possibility, off I went to counselling.  I was into my second session when something happened that triggered a chain of events that solved the mystery once and for all.

I decided to get a kitten.  My old cat had passed away and someone I knew was giving away this cute little ball of orange fluff and I couldn’t resist.  He was so affectionate that he followed me everywhere and one morning when I was getting ready for work he managed to trip me up (which wasn’t difficult as I was going through a particularly bad patch with my weak leg).  I didn’t actually fall over but landed very heavily on my left foot.  It was as though a bolt of electricity had shot through my foot up to my waist and it hurt like hell!  On the advice of my local doctor I ended up at the 24 hour surgery for an x-ray of my foot and to get some crutches as I was finding walking exceptionally difficult.  If I put too much weight on the foot I would get the electric shock sensation.

The young doctor who examined me after the x-ray was less than helpful as the results showed there were no broken bones and he didn’t seem to think that the electric shock sensation was anything to worry about.  We talked about pain relief and I explained about the spinal operation and said that I’d received some Tramadol after the surgery along with a virtual lifetime supply of Panadol.  He brushed the Tramadol off as being a total overkill and said I should do something about my peculiar gait (no shit Sherlock).  Why not get some physio?  (What a novel idea- why didn’t I think of that?)  He then attempted to trip me up (figuratively speaking) about which leg was weak and which foot was hurting as though I had somehow got my story wrong.  Clearly he thought I had absolutely nothing better to do with my day than to visit the after-hours surgery and waste everyone’s time, including my own.  If I had been feeling better I might have been in a position to stand up for myself but by the time I got to reception to pay the bill I was in so much distress I was uncharacteristically in tears.  I could scarcely walk, had no crutches and wasn’t signed off for ACC.  Thankfully the receptionist/nurse at the counter saw my distress and organised some crutches whilst the young doctor I’d seen rushed out and gave me a prescription for Panadol.  This to my mind was clear evidence that he hadn’t listened to a word I’d said.

After that nasty little episode things got progressively worse and I ended up having nearly two weeks off work which seemed odd given that the cat tripping thing was a relatively small incident.  I went to my local doctor and was prescribed anti-inflammatories.  Unfortunately these gave me horrendous stomach cramps and then I started to go numb around my midriff which affected my ability to empty my bladder and bowel.  Although I thankfully hadn’t become incontinent, I literally had no sensation of when I needed to use the toilet.  On the day my legs gave way completely, my daughter was at home with me and she called an ambulance.  I was taken to public hospital and given an MRI, not just of my lower lumber spine this time, but of my entire spine and brain.

The following day I was told that I have Multiple Sclerosis.  I was neither surprised nor distressed by this news.   I was relieved.  It explained so much of what I had been through for the previous four years and there was relief in the knowledge that I was finally taling to people who actually understood what I was experiencing.  It wasn’t in my mind.  I didn’t need to ‘just get a bit of physio’ or ‘take a couple of Panadol’.

I was discharged from Christchurch Public Hospital and transferred to the Burwood Brain Injury Rehabilitation Service at the beginning of last month.  The doctors, nurses, occupational therapists and physiotherapy team there are absolutely amazing, as are the newly built facilities.  I feel very fortunate to live in a country where services like this one are available when you really need it.  I was discharged three weeks ago and am home now.  Although I’m not independently mobile and am still getting used to being surrounded by mobility aids, some of the symptoms are easing a little and I’m feeling a lot more confident.  I’m extremely fortunate to be surrounded by a caring community and to now have an understanding employer enabling me to return to a work situation that accommodates my condition and for this I am so grateful.

The invisible nightmare is over and at least I can put a name to it now, if not for my own understanding but for others.  I’m at the beginning of a new journey now and I have no idea what is in store but I know this much, it’s going to be very different.

 

An Unexpected Turn of Events

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When I began this blog my intention was to post a few amusing poems and comment on some events that had tickled my fancy.  In the intervening years I developed a mysterious health condition which I initially thought was just a structural problem with my back and all I needed was to be a bit more active and to ‘get a little bit of physio’.  I even had spinal surgery in June 2015 that I was assured would relieve my symptoms.

On 22 September 2016 I learned that my problem was well beyond ‘a little bit of physio’ and that the peculiar symptoms I had begun to experience  when I was living in Australia towards the end of 2012 was in fact Multiple Sclerosis.  I knew very little about this disease prior to my diagnosis and to be honest I still don’t really, although I’m learning fast.  MS has not affected anyone else in my family to my knowledge and because everyone’s experience of MS is different, my journey will be unique.  I’ve let the site lapse a bit but have decided to bring it back to life and document my experiences

There will certainly be dark and difficult days ahead.  This is a new a different world for me.  The challenge is to cope and not just cope but to maintain my sense of humour and remain positive as I learn to live with this complex and challenging condition .

… and Back Again

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I was soon to learn that Newcastle is a notoriously hard place to meet people.  Probably not so bad for my daughter’s age group as it is for people over the age of about 40.  It’s a University town and there was plenty there to keep her occupied and she made many new friends, but apart from work contacts and some family living outside of Newcastle but in NSW, I was pretty much on my own.  Coming from a small community where you can’t walk down the street without seeing someone you know, I was finding this hard to come to terms with.  I missed having proper friends rather than casual acquaintances, and I began to get homesick.  And then I began to get sick.

Sick is probably too strong a word for it.  But I was at the beginning of a long and very bewildering journey that led me down a lot of blind alleys and cost me a lot of money.  It started as a pain in my arse (literally) and one leg that gradually became weaker and weaker until I found walking very painful and difficult.  I went to four different GPs, three physiotherapists, two chiropractors, two Bowen therapists, two masseuses, an acupuncturist, an Orthopaedic Surgeon, a spinal surgeon and a neurologist.  I had two MRI scans, a cortisone injection, two x-rays, a nerve conduction study, and an ultra-sound.  Apart from ‘normal degeneration for my age’ everything appeared to be in good working order … except my bank account.  As I didn’t have any medical insurance in Australia all of this was self-funded, except the GP visits which I was able to claim on Medicare.

The adventure was over.  By this time I was well fed up and just wanted to come home and be re-united with my wonderful friends and family, not to mention my NZ Medical Insurance policy (which thankfully I still had) before I spent everything I owned (and didn’t own) on medical bills.  My daughter and I booked our tickets, the removalists (which I had to pay for myself this time) came and packed up our worldly goods and on 26 July 2013 my daughter wheeled me onto the plane back to Christchurch.  Within a week of our return I had found a wonderful place to live with magnificent views of the harbour in the community I had longed to return to, I found a job and I bought a car.  And yes, I did get to what I then believed was the bottom of the pain and leg weakness.  I saw a neurosurgeon in Christchurch who instructed an MRI which revealed that a bone in my back had slid forward over the bone below it causing the nerve roots to be squeezed.  In June 2015 I underwent four hours of spinal surgery which I was told would relieve the problem.

I will never regret the experience of living and working in Australia – there was plenty of laughter as well as tears, even if it was just to teach me how to appreciate what I have in the here and now, wherever that may be.  But I know that for my here and now that place is New Zealand.