My Fight with CFS … Part 1


I have Chronic Fatigue Syndrome (CFS), or as I prefer to call it, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). It is an extremely misunderstood and debilitating illness. I have read that the average time for a person to be ill with CFS is 18 months. I have had it for 18 years more or less. It has cost me a lot to be suffering from this illness and it impacts on my life on a daily basis. Some days are not too bad, while others are extremely terrible.

My journey with CFS began in the aftermath of the Newcastle earthquake of the 28th December 1989. In early 1990, while working at Hawkins Masonic Village repairing roofs damaged by the earthquake (it was raining and many roofs were leaking), I began to feel persistently unwell. I decided to see my doctor who put it down as some sort of stomach bug, most likely Gastroenteritis. After two weeks of medication it was becoming clear that I did not have Gastroenteritis and something more sinister was the cause of my intensifying illness.

Within weeks I had begun to develop all of the debilitating symptoms of CFS and what was worse for me they were all intensifying their effects upon me. What was wrong with me was now something of a mystery, but it was clear I was very ill and getting worse.

When I was younger I had Hyperthyroidism and so the doctor assumed that this was what was wrong with me again, despite the fact that blood tests indicated I no longer had an issue with that disorder. I was placed on medication for Hyperthyroidism and monitored. The medication had no effect on my illness and my patience with ‘witch doctoring’ was running out. I pleaded with my doctor to send me to someone else – a specialist. But who would be useful to see?

A friend had recently been diagnosed with CFS by an Immunologist and eventually I prevailed with my doctor to send me to him. Eventually I was able to set up an appointment and so my time with Doctor Sutherland of the Royal Newcastle Hospital Immunology Department had begun.

By this time I was suffering a myriad array of symptoms, with varying degrees of intensity depending on what week I was asked. Among the most debilitating of these symptoms was a persistent headache that no amount of painkilling or other medication had any impact upon. The headache was like a migraine that wouldn’t go away. It would last for an 18 month stretch this first time, bringing with it an intolerance of bright light, noise, etc. These things caused me immense head pain.

I was also suffering numerous nose bleeds (which I often get when I am very ill), fevers and chills, brain fog (a situation where you seem to know what is going on yet you have an inability to act in a logical manner – some times the sense of knowing what is happening disappears altogether), painful eyes, chronic fatigue in the muscles and extreme soreness, tiredness to the point of sleeping at a drop of a hat (I was sleeping for over 18 hours a day with no relief to my tiredness, headaches, etc), loss of strength in my limbs, constant nausea, inability to think or concentrate, etc.

By this time I was already having time away from work, with being away for weeks at a time being the norm – thankfully they were quite understanding of the fact that I was very ill.

At my lowest point during these first two years I was reduced to being bed-ridden, using a cane for stability when walking and at times was unable to walk. I was sleeping above 18 hours a day with no benefit from it.

During this time of extreme illness I was subjected to innumerable blood tests and other tests, which all revealed little at all as to the cause of my illness. A process of careful elimination under the care of Dr. Sutherland brought the diagnosis of CFS, as well as a psychological evaluation.

There was no cure to be found, with the only helpful advice having come from Dr. Sutherland. He told me to try and rest, then to slowly build myself up again. Walk one block for a week, then two blocks the following week, etc. If I overdid it I would be back in a heap again in no time. I needed to be able to read my own situation to know when I should try to rebuild my life. This advice has helped me through the last 18 years.

I struggled with the illness for 18 months or so and I also struggled with the enigma associated with the illness. That I was sick was not believed by all and this has been a constant stereotype I have been confronted with throughout my illness. I often found myself questioning whether I was sick or whether it was some mental thing. It was a relief when a doctor finally gave me a name for the illness and confirmed I was indeed very ill.

There were times (as there has been since) when I thought that dying would be a better alternative than to be as sick as I was, with no life and the prospect of endless years of severe illness. Suicide was something that popped into my head from time to time, but thankfully it didn’t stay there for long.

At times I found myself not knowing what I was doing, where I had been, etc. At one point I waited behind a parked car, waiting for it to turn the corner only to realise ½ an hour or so later that the car was parked. I found myself having gone shopping with a load of groceries I didn’t need and never had used before. It was like having a form of early onset Dementia.

After about 18 months I began to get better – or so I thought. I was well enough to knock back participation in a trial medication experiment for CFS sufferers which would involve a lengthy stay in hospital and a 50% chance I would receive the placebo.  I declined the invitation being concerned I would loose my job as a result of being in hospital for so long.

My health began to improve and I thought I was finally over the illness. During this time I lost contact with Dr. Sutherland who left the hospital because of a dispute with NSW health at the time. Many doctors left the public system at the time.

NEXT: The illness returns

Advertisements

Resignation (Written – 5 August 2007)


Well, things have all changed for me in a very short period of time. I have resigned from my job, effective September 14. I don’t think I had a lot of choice in doing so, given the fact that my current job is contributing enormous stress to my life and as a result my health continues to deteriorate. I have Chronic Fatigue Syndrome (CFS) and I have tried for the past three years to cope with the increasing stress and workload levels ~ however, the levels only increase and never decline.

It has not been unusual for me to be working every day without a break (when not physically at work, I work at home, taking my work home with me) and then to be working all hours in a vain attempt to get ahead. Yet every stride I make only lands me further tasks and projects to accomplish, with there being no light at the end of the tunnel.

There was a brief moment when there appeared a distant light at the end of the tunnel in which I work, but that has now been well and truly snuffed out, as a multitude of new projects began to pop up on the near horizon. Despite my pleas for a break from such things there will be no let up. It is impossible for me to sustain the levels of commitment I am being asked to give, with the load being simply too much. My staff are barely getting by now, as am I. All I can see is a complete health meltdown if I continue at the job, with no personal or spiritual life whatsoever ~ no job is worth the cost that this one is exacting from me.

I have worked with this organisation for nearly twenty years and it will be sad to leave. There were tears in my eyes as I voiced my decision to resign on Friday and I guess that was inevitable. I had thought I might work here until my retirement, but that certainly is no longer a possibility. I can no longer give the role for which I am employed the commitment, enthusiasm or interest that is required, certainly to a level that I myself am personally satisfied with.

The final straw was a meeting held last Wednesday with my staff and senior management. Without going into details, the meeting destroyed my confidence and left me shattered. I felt that everything I had given to the role, with all that it had cost me and was continuing to cost me was far too much, and far too much to ask of anyone. My spirit was broken and I left the meeting not feeling that I was able to go on. I knew it was over right at that moment. The role had exacted its last toll ~ my very soul (or was about to). It was time to end the torture before it cost me my life.

I leave the job knowing that what I had achieved I had done well and that I have transformed the department into a well-oiled working team that has accomplished a great deal in the last few years. There have been massive improvements across the board, not just in physically completed projects, but in the way things are done, procedures, etc.

The Preventative Maintenance Program that I has established and which had returned us a 100% compliance record in our Accreditation round last year is now about to be pulled apart in order to cut costs. I was about to see the good work of the last three years begin to be dismantled and standards begin to dramatically decline – all that work which cost me so much was now to be undone. What a waste of those three years was all that resonated in my mind. Why had I given so much for it to be so thoughtlessly thrown away? How pointless to continue working so hard when this was to be the result of my bleeding for the organisation? It had to end and so I have ended it – for me anyhow.

Sadly, in my opinion, the organisation is barely functioning these days and now my own department, which had struggled against the tide of the downgrade movement, was being forced into the same black hole of mediocrity. Already we were struggling to get work done because of centralisation of decision making, etc. What had taken us mere days to accomplish in the past was now taking us months as we waited for approval to spend anything from a few hundred dollars to larger amounts. We have been bogged down for months in senseless rules and regulations imposed on us from Head Office. The efficiency with which our department had begun to function was being eroded away and was in danger of grinding to a halt, but there seemed no real concern about this outside of my own department. It had become an embarrassment to me and the appearance of this to outside eyes was reflecting badly on me. There seemed no clarion expressions of support and explanation, certainly not to those who were being impacted by what was going on ~ I was left to suffer the blows of dissatisfaction alone. There was nothing expressed from any other quarter to explain the delays in meeting the department’s responsibilities. At the coal face we suffered the blows of criticism alone and then were criticised by the ‘silent’ also, for not meeting our responsibilities, even though it was clear to the ‘silent’ why the delays were there.

Anyhow, I could go on for quite some time cataloguing the issues I see happening in the workplace at the current time, but that is no longer my concern. I have only to the 14th of September 2007 to endure what has become a burden I care no longer to carry. Already the relief is palpable, as I now have light pouring through an escape shaft I have smashed through the tunnel roof in which I have been working and the way out is clearly before me. I will write soon of what the pros are concerning my resignation and what are the cons of the decision.

Hot & Bothered – Cold & Shivering


I came home from work early today – just after 9.00 a.m. actually. Why? Because I’m not too well just at the minute. I’ve had a flu shot earlier in the year, so I’m hoping it is just a cold. Having said that though, my back is really sore ~ one minute I’m hot and bothered ~ the next I’m cold and shivering. I also have a really sore throat and runny snoz … Sounds like a flu-like thing doesn’t it? Frown

So I’m trying to keep rugged up and trying not to get too sick – if that is possible. The problem is, if I do get really sick it may cause me to relapse into the illness I’m forever suffering from – just as I’ve got over it. So that’s the real worry I guess. Still, no use going there in my mind when I’m not there in body – makes sense to me.

Branching Out


We began the big clean up at work today after last weekend’s cyclone. If today is any indication, it would seem that we have the rest of this week and well into next, to look forward to, in order to clear the grounds of debris – which is mostly branches and fallen trees. We have created several large piles of green waste which I hope to have chipped and put back onto our gardens – nothing should go to waste out of this exercise.

We are looking at replacing the roof on our five wing Aged Care Hostel after finding it had at least thirty leaks in it, as well as the two large holes from skylights which were torn off during the storm. This should go a long way toward repairing the issues in that particular building. We have placed a tarp over the worst section of the roof (as well as the previous two tarps covering the ruined skylights). There were also three other buildings to date that had roof damage during the storm – that we know of thus far.

More debris to clear tomorrow with yet more piles of green waste to be chipped and returned to our gardens.

Leaves Come from Trees


As always there are some funny things that happen, even in the midst of major natural disasters. Take for instance this story. During work to clear roads of trees and debris in our retirement village, one of the village residents got his gas BBQ operating (there was no electricity for quite a long time – 24 hours) in order to give his neighbours a hot coffee or cup of tea. Maintenance staff also got an opportunity to get a hot drink.

One woman came down and began to speak of how she had been picking up leaves all morning from near her place. At this point another woman pointed out to her, ‘the leaves come from the trees.’ Well this was one revelation that we were all thankful to get, not knowing where all these leaves had come from.

Later on, one of my staff decided to take a seat on the roof we were cutting a large tree branch from (it had gone through the roof). Incredibly he decided to sit in the hole that the branch had made through the roof – he says he didn’t know it was there. Well, that had me stumped, especially since the hole was the reason we were on the roof in the first place.

Storm Boredom


Ready for BingoSome strange things can happen when you are stuck in a storm and can’t get out. It seems like sanity is lost for a brief period as you try to keep yourself amused. So a strange game of bingo in the middle of the night playing for a piece of a chocolate and wearing strange head gear was the way to go in our opinion.

You also need to find somewhere to crash and sometimes an aged care air chair is all there is available – not too comfortable.

The Bingo Caller

 Sleeping in an Air Chair

 

Going to Extremes – Flooded In 2


Hey there,

Some of the Storm DamageIs this a long weekend? It sure feels like a llloonnnnggg weekend – like it will never end. I feel like I have been battling this cyclone for weeks already (but only 3 days), yet there is a mammoth task still ahead. However, it is great to know that the major services are all up and running as they should be, which has made the effort of the past three days worthwhile.

Tree across roadI am however extremely exhausted after all of the effort. I have been on roofs in rain, lightning and buffeting winds, been in buildings that were being flooded, hailed in through the roofs and having parts of the roof blown off. I’ve been near swept away in the work Ute, faced torrential waters raging towards me and rapidly rising, and travelled behind cars that began to float away in the torrent. There have been moments when I thought the building I was in was about to be swamped while desperately trying to hold the water out shoulder to shoulder with quite a number of my staff and other employees of my workplace, watched as one of our vehicles was enveloped in flood waters and later abandoned, and wandered around our retirement village in the early hours of the morning surrounded by devastation (yet with very little building damage thankfully). As I say, its been a very, very long weekend.

Tree across roadDuring the heat of the battle on Friday afternoon we attempted to prevent further damage to one of our buildings, having already lost 2 large skylights. We managed to stop two more being blown away just in time. At one point we thought we were going to loose the fight to save three wings of the five wings of the building, as water was about to come flooding into two of the wings and water already entering the centre wing through the dining room and the kitchen. These entry points in the centre wing were then sand-bagged. All hands were on deck trying to hold back the waters – then thankfully the rain stopped for the time being and the looming immediate disaster subsided, though it again threatened during the night.

Tree over roadI was unable to reach home for over 40 hours as the entire neighbourhood around Cardiff was inundated and became a battlefield. At about 5pm on Friday afternoon I tried to get home, but soon discovered that the already wild weather was intensifying rapidly and that I wouldn’t be able to get back to work where I would be needed. So when I got to the main street of Cardiff I needed to turn around in torrential train and extremely strong winds.

Storm debrisAs I approached the main street the road I was travelling on began to turn into a river complete with rapids. The car in front of me ‘blew up’ and began floating away. It was necessary to get onto the median strip to get through the rising waters. Cars were beginning to go all over the place and float away. I managed to get into the main street of Cardiff and to turn around, but I had to return the same way.

As I got back onto the road it was clear that something unusual was unfolding, with water levels rising all over the area. Water was flowing across the road in an area that seemed to have become a large river and infinitely wide. I tried to travel across it, having already become stuck in the middle of it without even trying to enter it. Incredible amounts of water was coming at me and as I approached the Cardiff ‘subway (the road passes under a railroad bridge),’ the amount of water was incredible and it seemed I was not going to get through. Cars were being swept along on the opposite side of the road and the depth seemed impossible to get through. the truck in front of me parted the waters like the red sea and I was able to get through right behind the truck – the car behind me didn’t make it. The journey ahead was something of a battle of trying to get through the next few miles/kms without being swept away in what was now a raging torrent, as water came roaring out of the properties and yards on the side of the road. Cars were being abandoned everywhere, as cars began to float away in the torrent and people fled for their lives looking for higher ground.

I managed to get through, just minutes ahead of the even greater chaos that was to follow. As I reached the village, the scene behind me rapidly became that of a major disaster. Locality after locality was transformed into raging rivers and lakes, with multitudes of cars being swept or floating away, swept into drains and buildings, becoming completely covered in water and being tightly packed against each other in some areas. Building after building was quickly flooded and thousands of people became stranded, trying to get home in the gathering darkness.

Throughout the night the winds continued to grow stronger and the rains got heavier. Finally the storm seemed to just stop. It seemed to reach its greatest strength at about 2am and then suddenly stopped – no more rain and no more wind (for the rest of the early hours anyway). I ventured out at about 3am into the devastation. The grounds of my workplace were littered with fallen trees, mountains of branches and endless debris.

In the early hours of Saturday morning I tried to get home again, managing to find my way back to Cardiff, travelling through eerie streets and suburbs. There were cars all over the place – cars crashed into telegraph poles, cars all over the roads facing all manner of directions and angles, many had hazard lights on but all empty of people. There was debris everywhere, with all manner of obstructions on the roads. There were trees and branches littering the footpaths, yards and roads.

As I approached the main street of Cardiff it became clear that I wouldn’t be able to get through that particular street. Ahead of me was a locality that resembled a lake with cars floating here and there, with others resting on various parts of the road and footpaths. I turned off onto a side road and tried to go home another way. as I approached another street towards my house and turned into it, I wasn’t prepared for what I found. Ahead of me was an abandoned ambulance which had been washed down the road. Surrounding it were a multitude of cars in various directions and angles. The large carpark near the road was full of abandoned cars that had been swept into it and which rested wherever they hit something or the water levels lessened. A car had been swept of the road and was lying against the chemist in the main street of Cardiff. There was no way through what was left of Cardiff and I had to turn back and return to work.

It was an incredible sight as I was required to weave my way through a maze of cars and other debris on the way back to work. At one point I looked down the main road leading to the region’s major shopping complex only to see water, abandoned cars and darkness going off into the distance. There were no people anywhere, there were no lights except for the occasional hazard lights of vehicles and debris everywhere – it was like travelling through an abandoned city after some war.

This car came to rest in a drain at Wallsend

I was of course stuck at work – not able to get anything to wear, having been drenched through about 24 hours earlier.

Stricken Bulk Carrier at Nobby's - Newcastle

Such then were some of the ‘highlights’ of this incredible storm event.

Under the Weather – Flooded In


So here I am stuck at work due to flooding all over the region. Something like 300mm plus of rain in the last 24 hours around the Newcastle – Lake Macquarie area. I have the building I am in sand-bagged at the moment, as water has already entered via several doors earlier in the day. I also have two holes in the roof tarped up because the skylights were blown off earlier in the day as well. We have all manner of containers catching water throughout the building – something like 30 leaks all over the building. There are laundry tubs, cooking pots, buckets and other various containers deployed throughout the building.

There has also been a tree from our property fall over the neighbours fence and destroy their pool. There are branches down everywhere and much localised flooding all over the grounds here were I work.

The surrounding region is a natural disaster area at the moment, with massive amounts of localised flooding and severe wind damage – there is the equivalent of a category 1 cyclone here at the moment.

As the title suggests I’m flooded in and can’t go home so I’m stuck at work for the rest of the night – along with a few other people. Not likely to be able to go home anytime soon I’m afraid.

Where’s Crepe Myrtle???


‘Does anybody know where Crepe Myrtle lives? Who is Crepe Myrtle? I’ve never heard of her!’

Such was the response to a job sheet that was recently handed out to one of my staff. The job sheet asked for a Crepe Myrtle to be pruned in a certain area of the workplace ~ thankfully Crepe Myrtle was never found or she herself may have been missing a few limbs & not just the shrub.