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