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?