Freakish Behaviour

So it occurred to me recently that I might not be completely normal psychologically.

For a person with M.E. that is a huge admission. Trying to battle the erroneous perception that it is a psychological disorder has left us too scared to admit to anything other than a completely balanced mind. For fear that lunatic psychiatrists around the world will leap out and yell 'Aha, we knew you were crazy!!'

Now don't get me wrong, I am not being flippant or derogatory about psychological diseases. I know that they are serious issues which should not be stigmatized. That is not the issue. The issue is that if someone is wrongly identifying the cause of a disease then you will never get the right treatment. And we really need treatment. Very. Soon. Please.

Despite my fear of psychiatry I am still willing to reveal my observation.

Here it is. I am not depressed. Which is weird, right? A normal person in my position would be, wouldn't they?

I am not always little miss cheerful, hell no. I have my share of melt-downs. But I'm not depressed. I have not lost enjoyment in things, I just can't do them any more. There desire is still very much there. Like most people with M.E. I have a huge list of things I would like to do if I was cured tomorrow. I think the first thing on that list would be to throw a big party. I would play loud music, drink (gasp!), just throw caution to the wind and dance around like an idiot. I would probably drive everyone utterly nuts!!
 I miss being able to do that, throw caution to the wind. Last time I did that I spent the next three days vomiting and unable to keep even water down. I injured my neck so badly from vomiting that it took weeks before it started to feel better. I was deathly ill. But I digress.

I am extremely fortunate enough to find joy in small things. Translation: I am easily amused. Also, I love to learn. I have a ridiculous sense of curiosity, always have.

As an example :  On Saturday I woke up with a fairly sore throat. My mutant lymph node (the one that always swells up) was huge, and really quite painful. On inspection, my right tonsil was really swollen and covered in alot of pus. Gross right? Well yes, it was. But it was also very interesting to me. I have always had an acute interest in biology, and apparently that includes my own. Now obviously it would have been better if I didn't feel like utter shite because of it, but if you are going to feel crap, it might as well be entertaining. In a OMG how can lymph nodes even get THAT big?!!?? And LOOK AT ALL THAT PUS!! Kind of way. Us ex-pathology workers tend to get fascinated by the grossest stuff. It was the same when I was working too. I was the sucker people called on to do something when it was too revolting for anyone else to stomach. I won't give examples, it is not everyones cup of tea.

So that started me thinking. Is it ok that I am so used to feeling like crap that any extra issues (like acute tonsillitis) barely even make a negative impression on me? I did feel even more sick than usual. What is the normal response?

And it is not just health related issues that I am accepting about. I am just a roll-with-the-punches kinda girl. I have had my fair share of knock-downs. Just as many trip-over-my-own-feet situations. Somehow, I always get back up. No matter what I get up. It is probably why Invictus is my favourite poem.

I have been told by a few people lately that I am a very strong person. Am I really? I mean, is there any other choice? Or is it just survival? If I didn't learn to just accept these things as they come along, I probably would lose my mind. Just fall into a gibbering heap.

It has left me wondering, maybe I did lose my mind years ago. I just didn't know it.

When will you realise?

One of the most frustrating things about health is that you only appreciate it when it's gone. Like so many things, I suppose.


I used to go through life without the slightest care for my health at all. I ate what I liked, drank what I liked, and smoked cigarettes. I never exercised. I wasn't a crazed hedonist, but I sure wasn't a health buff either.

Now don't get me wrong, I don't think for a minute that my lifestyle is what caused my disease. I am pretty sure it has an infectious cause. However, I am equally sure that my 'she'll be right mate' attitude when it came to my health didn't help. It meant that I didn't pay enough attention when things started going pear-shaped. Not to mention the fact that if I had stopped working a lot sooner, I don't think I would be anywhere near as sick as I am now.


As my health became worse and worse I reasoned that my unhealthy lifestyle was starting to affect me. Well, I thought, I do drink and smoke, so it's no wonder I feel awful. I began to remedy my behaviour. First I started to eat healthily, lost weight, then I cut down my drinking and smoking (I no longer drink or smoke). Finally, I started to exercise every day, and then, twice every day.


I was absolutely sure that I would begin to feel better. You hear those stories of people losing weight and getting fit. They always say they feel so much better, they have so much energy!! Not me. I was still getting worse and worse. I couldn't understand why exercising never got any easier. Surely by now my body would be getting used to it?

Not my body. If anything, it was getting harder, what was going on? I didn't jump in at the deep end, sensibly, I planned to begin gradually and increase it as time went on. I would start off on Monday (after allowing myself to have one day off exercise) really well. I found it relatively easy to hit my target duration of exercise. In the days that followed, I would struggle more and more. By Friday I would be gritting me teeth and getting through it by force of will alone, if I managed to complete it at all. I would stop exercising and drunkenly walk away on legs that could give out at any moment. Shaky and totally depleted I would wonder why this was such a problem? Why was it so bloody hard?


This period of time was the time during which my symptoms accelerated most rapidly. Of course, I didn't realize the connection back then. Why would I? I mean, there is no disease that gets worse if you exercise, right? Doctors are always telling us that exercise is the solution to all our problems. Well, as I discovered the really hard way, sometimes 'shock horror' doctors are wrong.


I don't blame doctors for my condition though, I blame myself. If I had actually listened to what my body had been trying to tell me for years, I wouldn't be as sick as I am now. There were plenty of signs which I wilfully ignored. I had actually made a very conscious decision to ignore my illness. Reasoning that it would eventually go away. The things which I disregarded included:  the left side of my face being numb, loss of coordination and balance, extreme exhaustion, reduced cognitive ability (short-term memory loss, word finding, reasoning etc), inability to focus my eyes, migraines (never had them before), muscle weakness, increasingly widespread numbness, pain and more excruciating pain, insomnia, dizziness, enlarged lymph nodes,  etc etc etc. What an idiot.


So now, when I see people doing what I used to do, it really really pisses me off. She will not be right mate! There seems to be no way of getting through to people who are rocketing down that same path. Even when I point out to them that they are doing exactly what I used to do, and they don't want to end up like me. That they are deliberately ignoring the possible consequences. They just don't realise how very precious their health is. They just won't LISTEN.

So take care of your health. As cliched as it is, Iit is so very precious. Don't ignore symptoms. Go to a doctor. If they won't listen, go to another one. There is just too much at stake if you don't.

We all think that it won't happen to us. But it can.

That is why M.E. is a cause for everyone. Because it could happen to anyone. It can happen to you, your mother, father, sister, brother, child, friend. Anyone.

When will you realise?

Mona Lisa Smile

It took me a long time to admit and realise that I was seriously ill. And of course, the longer I denied it, the sicker I got. It really is mortifyingly embarrassing actually.
It all started in 1996, when I had glandular fever (mono). My doctor had written me a note to have two weeks off work. After two weeks I still felt really awful, but reasoned that my doctor knew best, so I went back to work. Idiot move #1.

Climbing the stairs to get into work I was having and extremely hard time. In addition, my heart was jumping all over the place. I had never experienced that kind of thing before. I remember thinking 'Oh, maybe I shouldn't have come back to work yet'. But I just ignored it and kept going. Idiot move #2.

The following year was atrocious. I had what seemed to be a never-ending series of colds and flues (with hind-sight, probably all the same illness). I became so sick of being sick that one day I announced to those around me that I was just going to ignore it, and eventually it would have to go away. REALLY BIG IDIOT MOVE #3.

This was a stupid decision, but one that we are all taught to do. Society tells us to 'soldier on' when we are sick, not rest and recuperate. What is more, this decision was based on past experience. I had always recovered from illness before, so why would I expect not to now? Unfortunately my decision to 'soldier on' left me permanently disabled, in constant pain and I will probably never be able to work again..

This stubborn and deliberate denial went on for the next nine years. This was despite experiencing : very stiff/sore neck and excruciating eye pain, extreme exhaustion and weakness, constant pain in muscles and joints (quite severe a lot of the time), lack of co-ordination (leading to minor injuries), general malaise, nausea, loss of balance, vertigo, cognitive difficulties (memory, reasoning etc), photophobia, visual disturbances, insomnia, orthostatic intolerance, heart disturbances (tachycardia, ventricular ectopy, ventricular trigeminy and occasional atrial ectopy) and migraine, among other things. Yes, I really was that stupid......

In addition, quite early on I experienced right-sided facial numbness (about the same time as I was first experiencing the horrible stabbing eye pain-Yay!). This numbness in my face was relatively mild, but permanent. It came to my attention, years down the track, that it correlated with a mild paralysis.

I used to look at photos of me and think 'Why do I have such a stupid look on my face?'. I would resolve that next-time I would smile properly. But yet again, despite the fact that I was SURE I smiled when the picture was taken, there was that lopsided, wry smile. Then I finally realised that the muscles just weren't doing what I told them. I thought I was smiling, but I wasn't! I was dismayed, people must think I'm a right grump!

My dad once said, when looking at some photos 'I really like how you don't mug for the camera and give a big cheesy grin'. Yeah, but I was trying to! He calls it my Mona Lisa smile. I really like that. Makes me a bit different, I guess.

So if there only two things that I want you take away from all this they are :

1. If you are sick, take it seriously. Do the right thing and REST. Stay at home and don't spread your illness to everyone else!! If you don't improve GET HELP. If they don't listen to you GO SOMEWHERE ELSE.

and

2. Even when you have a partially paralyzed face, there is an upside!

What's in a name?

Well maybe not an original question, but an important one nevertheless!

The answer? More than you might think......

Take this blog, for instance. Some might consider the name of it to be a bit odd, and that's because it is. Once it is explained however, it makes more sense.

I have always been an optimist, wanting to believe the best of people, and life in general. Despite it's best efforts, life has not managed to completely beat the optimism right out of me. And believe me, it has really tried!

It is impossible to remain unchanged in the face of life however, and indeed that is the case for me. The effect has been to dull my optimism somewhat. I no longer believe that life will be all rainbows and baby bunnies, but I do believe that it will be something. I live on the outskirts of optimism, in the fringe as it were. I try to remain positive, but it is a cautious optimism. Sneaking peeks around corners and peering into the distance and trying to see what is coming. Telling myself that everything will be alright (won't it?), that I'll get through (mostly).

So there you have it, I am The Fringe Optimist, and hence the name.

A much better name than some things, I might add.

Names can have a lot of power. They provide a quick reference to an object, person, idea etc. The ultimate summary and snapshot. Which is why a bad name can be so disastrous. There is a reason that most parents agonize over it for a ages when naming their children. They know that they could practically ruin their child's life with the choice of one wrong word.

Well there is one name that hasn't just ruined one person's life, but millions of peoples lives. What name is that? More on that later........

Firstly I would like you to think of a disease. It is horrible and utterly debilitating. Symptoms include : weakness, clumsiness and lack of coordination, vertigo, numbness, myoclonus, fainting, visual disturbances, extreme exhaustion, cardiac symptoms, digestive problems, cognitive difficulty, disorientation, nausea, painful lymph nodes, sleep disturbance, autonomic dysfunction including - low BP, high or low temperature, sweating, tachycardia, arrhythmia, orthostatic intolerance. Pain is almost always a feature. Joint pain, muscle pain, migraine, the list goes on and on. Patients often have co-infections.

Do you know what this disease is?

About 25% of patients have a severe form of the disease and are bed-bound. Many are unable to care for themselves. Some have to be tube-fed. Even those which have this disease only moderately will be left shaking and utterly exhausted after something as simple as a shower. Unable to do anything else for the rest of the day.

Sounds horrible doesn't it? Well it is, but even worse is that if you have this disease you will lose nearly all your friends, your job. Be alienated from nearly everyone, including your family. Will most likely receive no help from anyone. Will be ignored, or even worse, abused by most health care providers.

Do you know now?

Well I am certainly not the first person to have this rant, and I won't be the last. This disease is what they call Chronic Fatigue Syndrome. I say what they call it, because it's certainly not what I would call it. Makes it sound like you are just a bit sleepy doesn't it? Quit your bloody whinging and get out of bed! Well believe me, if it was just as simple as mind over matter, nobody would have this disease. I have talked to lots of sufferers and it always strikes me what a (mentally) strong, intelligent, determined lot they are.

I know that there are parts of the world (like the US) where they only know this disease as CFS, making it impossible to use any other name without people looking at you as though you have two heads (to tell the truth, it is not much better here in Oz).

However, this is the first and last time you will see me use that name. As far as I am concerned the neurological disease I described above is called Myalgic Encephalomyelitis or M.E., for short. You see that is the truly infuriating thing about giving this disease such a crap name, it already had a perfectly good name - M.E.