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

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THE STRUGGLES OF A CONFUSED MIND


I have Chronic Fatigue Syndrome (CFS) or Chronic Fatigue and Immune Dysfunction Sydrome (CFIDS) as it is probably more accurate to call it. Lately I have been suffering a lot from confusion, dis-orientation and memory loss issues. It comes and goes on a daily basis (often several times through the day). The level of frustration I have with myself at times is immense, as I struggle to get through things that most humans can probably do quite easily.

Anyhow, this has become a real struggle for me each day ~ not so much the illness itself, as the way I’m able to live as a result of it. I am not one to blame my illness for my behaviour – I detest that sort of thing, especially in myself. However, there are times when I’m really not myself and my increasing frustration begins to show in my interaction with others. Apparently some people have been complaining about what is perceived as rudeness in my interaction with some people. I really think this ‘rudeness,’ is probably me just trying to cope with whatever situation I find myself with and my struggles with a confused mind. There is certainly no intent to be rude, of that much I am sure. However, if people perceive it to be, then something is certainly there and somehow I need to be able to cope with that better.

This is a real situation that is adversely affecting my ability to work obviously. If you read this, then please, pray for me. I am concerned to live always in a manner that is right before the Lord and to give the world no reason to be able to cast poor comments on my profession, and of course, consequently, the one I profess to follow.

As I try to look at these past few weeks as objectively as I can, I do not believe that I am being rude in the situations in which I am being told I am ~ though that in itself is a problem because I have been given very little in the way of examples to go on. So that only increases my level of frustration. There is also the fact that everything I do is interpreted in some way as a result of my being ill and everything is being second-guessed. So there is more frustration as I try to handle that.

The only thing I can do is seek out those people who feel I have behaved rudely to them and explain the situation. Perhaps that will help, perhaps it will not. I think I need to be very careful as to just how much I reveal so that I am not the subject of a lot of needless gossip, etc (which is rife in the workplace).

Anyhow, that is my current thoughts on the matter.

STRUGGLING


There are times in life (at least for me) when it all seems a little too much. It’s like, ‘Why am I even bothering with it anymore?’ Now most certainly there are plenty of people out there who have it far worse than I do and I’m not trying to cast the sympathy seeking line ~ I’m simply putting down what I feel like today.

It has been almost two years since I posted anything in this ‘blog,’ and I cannot say for sure how long it will be until I do so again. What I can say is that a lot has happened in those two years. Of most importance is that I have lost my best friend and that for no reason that I can figure out. Believe me, I have searched my mind looking for answers, as well as seeking them at the source ~ but alas, to no avail. I’m now beginning to think I have lost yet another friend, the person who I currently regard as my best friend. Again, I do not know why. These two people were/are friends on the earthly plane so to speak. Of course my best friend will never leave me, but there is still a sense in which the loss of friends in this sphere is hard to take.

I find myself struggling with illness again and not really knowing just what is going on with me. I know there is a lot of mental stuff happening, which is a hangover from the last time I was ill ~ now however, I have my next cycle of illness with it and I’m not over the last yet. CFS/CFIDS is not an easy thing to cope with let me tell you.

I have tried to deal with the illness early this time round, but that has now left me in the ‘doghouse’ at work from all appearances. So it seems I can’t win here ~ if I leave it too late and get sicker for longer because I keep working, or I take time off early to head it off from getting worse for longer. This is the dilemma I daily face at the minute.

It’s times like this, when you are spoken to in a way which in my view is extremely poor, that you have to assess just how you speak to others to ensure your speech is not having a poor effect on others. This I will try and do, though I know I don’t always succeed, especially when I’m struggling with confusion, memory problems, etc… but I must keep myself from treating other people poorly, even while I’m ill (I don’t see it as an excuse for poor behaviour).