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?

What has your disease done for you lately?

One thing I have always endeavoured to do throughout my life is to see things from another point of view. I don't always succeed, but I try. In keeping with my naturally optimistic nature, I also try to see the good side of things. Even things that are normally perceived as 'bad' things. I like to turn things on their head. I'm just contrary like that.

This has led me to wonder "What are the good things that my disease has given me?" The bad things are obvious. Pain, suffering, loss of income, friends, a social life, blah blah blah. This however, is a trickier question.

Interestingly (at least, to me), there are quite a few positives.


1. Getting to see more of my husband.

Not like that people, minds out of the gutters!!. I mean spend more time with him. Prior to my illness I saw my husband only on weekends, really. He starts work at stupidly early o'clock in the morning (otherwise known as 5a.m.). This was the equivalent of the middle of the night to me, as I worked evening shift (1 - 9p.m.) at a pathology lab. He finished work just as I was starting work, so he was usually in bed by the time I came home. People would ask me how he was and I honestly didn't know.
When I stopped working I was a little nervous that spending so much time in each others pockets might be a bad thing. We might drive each other nuts. We joked that the only reason we had been together so long was because we never saw each other. A little bit of me wondered if that was true. However that worry was for nothing because it has actually been really great! We have been able know each other better, and I have found that I really enjoy it when we spend time together.



2. Teaching me to count my blessings

Something that I have learned through being sick is that no matter how bad things get, it could be worse. 25% of people with M.E. are affected so severely that the are completely bed bound. Some can be fed only by tube and cannot tolerate any light, sound, smells, or even touch. People have died because they were not able to take care of themselves.
Alot of M.E. patients have no friends or family who understand them. These people are often accused of not trying hard enough, or malingering. They are blamed for their illness and no help is offered. Many lose everything and everyone. Or don't have a good doctor, or even any care at all.

I feel extremely lucky that I have such an understanding husband, he has been wonderful. Most of my family and close friends understand my situation. Things might be hard, but I am in much better shape than some.


3. New found appreciation of Health.

Most of us take our health for granted, which is understandable. Why worry about something if you don't have to, right? I was never concerned about my health, not even after it started to deteriorate. I didn't really care much what I ate or drank (not that I was too unhealthy). I used any cleaning products and beauty products I liked, never even vaguely considering what kind of chemicals they contained.. I  wasn't one of those people with sensitive skin, or allergies. I didn't even have hay fever.
Oh boy, has that changed!! A few years ago, before I stopped working, I gave away most of my perfumes to co-workers. I just can't tolerate them anymore, they make me feel too sick. The relatively mild ones that I kept can only be worn on a good day. Even then, it is pushing my luck. I do most of my cleaning (when I'm well enough to clean) with bicarb soda and vinegar. I can only use the mildest, everything-free face products. No fancy anti-aging stuff for me!!
So now I have to watch the products that I use, what I eat and what I drink. But the one that really annoys me the most is that I was to watch what I do, the energy I use, even how long I stay upright ( I have dreadful POTS - Postural orthostatic tachycardia syndrome, a common problem for people with M.E.). This kind of restriction on the way you live your life is enormously frustrating.
The up side is that when you have one of those beautiful, wonderful good days, it is absolute heaven. You can actually do some cleaning, cook some interesting food, maybe even go out of the house!! Believe me, I don't take my health for grated anymore, I cherish every scrap.


4. Seeing the better side of human nature.

Now anybody with M.E. will have horror stories about doctors, friends and family treating them appallingly due to their illness. It's true, we do get to see some of the worst of human nature, but their is also a flip-side to this.
Despite what some people will say, there are good doctors out there. Ones that understand the illness and understand the devastating impact it can have on you. When you meet one of these people light shines from above, and angels sing. Well, maybe they don't, but it feels like they should. Most doctors who are in the business of treating people with M.E. are genuinely good people. We know this because if they weren't, they wouldn't take on such a thankless a task. Treating these patients is very difficult, there is no real treatment for this disease yet. You can only really treat the symptoms. Doctors want to make their patients better, and with this disease that is not always possible. It must be very frustrating for them.



5. Seeing the better side of human nature.

It is a similar case with those of your friends and family who actually get it. When someone shows you that they have done their research, and are trying to understand and help, it is truly wonderful. Yay!! They don't think I am a lunatic, or a malingerer, or drama queen, or antisocial. When these people actually understand that there are some things that you just can't do, it's great!!. They don't blame you for it, or try to talk you into things that you shouldn't do (like drink alcohol, or overexert yourself). Truly caring people are a wonder to meet.

Having said this, I do know that understand this disease is a very hard ask. The media has downplayed this it for decades. Names like 'Chronic fatigue syndrome' or, even worse 'Yuppie Flu' really sound innocuous. Like you just need a little nap, or something. I myself used to think about this disease in that way (something I feel very guilty about, and yes, karma is a bitch!!). There is something about the name Chronic fatigue syndrome which makes us think we know what it is, when we don't actually know anything about it.



6. Seeing the better side of human nature

Joining online support groups and researching online has introduced me to, and made me aware of, some truly wonderful people. There are people who extremely sick, but have a huge impact on the M.E. community. People like Jodi from the Hummingbird's website (http://www.hfme.org/). She is completely bed bound but has amassed a huge amount of information! Or Cort Johnson of the Phoenix Rising website (http://www.aboutmecfs.org/index.aspx), who has one of the best and most balanced sites for up to date research information.
There are reporters, who noticed that governments weren't doing enough to help, and tried to spread the word. Educating people is very important when it comes to M.E., so they have played a very important part. We need healthy advocates to ask the hard questions and people like Mindy Kitei (http://www.cfscentral.com/) and Hillary Johnson (http://oslersweb.com/index.htm) have been doing this for years.
And there are the wonderful people from support groups who have shared their knowledge and comfort those who need it. People like my friend Aylwin, who sadly is no longer with us. So generous of her precious energy and beautiful spirit, to help those in need of advice and understanding.  http://www.hfme.org/aylwincatchpolememorial.htm
Countless others could join those I have listed here. I have been extremely lucky in my life to have known some truly wonderful people. Many of those have been after I became so sick that working was impossible. I am housebound most of the time, but these wonderful people have helped ease my loneliness. It has been a privilege to know them.

take care, ness

The dangers of nice days

I'll admit it. If Australia is in the world cup, I catch world cup fever. It's practically un-Australian not to. We're like that.

For most people this would mean stay up to ridiculous hours to watch games that are played at sensible times - in South Africa. Not me though, I can't do ridiculous hours. Nor do I have the stamina to watch game after game. Or even just a few games really.

So I was really happy when the Australia vs Ghana game was on at the watchable time of 10pm. I thought that we might have a chance of winning, so was quite excited by the prospect.

Well we started off well, scoring a goal in the 10th minute, but it all went pear-shaped when Harry Kewell was sent off in the 24th (after all the pre-game hype about whether Kewell was going to play or not we had joked that now that he was playing, he would probably come off injured in the 23rd minute - spooky! Sorry Australia!) Then Ghana scored and it was basically all over.

I had thought we still had a good chance of winning, but at half time retired to bed as I was feeling, to put it bluntly - utter shite (not soccer-related, just me!). I was disappointed, the world cup doesn't happen every day, but sometimes (actually, quite often) even just sitting on the couch watching telly is beyond my limits.

Anyhoo, I knew that any further goals would be heralded by the screams of the guys still watching.

Didn't pick me as a sports fan, did you! Well honestly, I'm not really. I really only take an interest in the big things. World cup, The Olympics, playing England in the cricket....

As far as sports participation goes, my lack of enthusiasm was largely due to the fact that I was really really really bad at it. I'm more of a bush-walking kind of person. I love getting out in nature. I'm lucky enough to live in an area which has a lot of nice bushland just a stones throw away. Plenty of wildlife to go with it too.

So last weekend, I suggested that we go on a picnic at this lovely bush spot with a great view. The weather was glorious and I was feeling inspired. It's a little bit of a walk to the spot, but I was convinced it was worth it. It almost was.

Now to be totally honest, I knew it was a bad idea when I suggested it. It's just that sometimes I get stubborn. Being sick means there is so many things I can't do, or have to avoid. I get fed up, and just want to do something. So I do it, even though I know that I will pay for it later.

Predictably, I was really sick the next few days. And have been ever since. In fact, it was probably the reason I couldn't watch the whole game last night. Weird, whether I am watching, or participating, the M.E. will still impose itself on me.

At least it stopped me from watching a disappointing game. There was no more goals scored after half-time. That's a bit of a bonus, I guess.

So as I sit here in a dark room, with my darkest sunglasses on, feeling awful, nauseous, and in horrendous pain. I ask myself was it worth going on that picnic? Well, it was a really, really nice day......

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.