CFS Awareness Day

I get fed up with the crazy amount of awareness days the world has but this one, CFS Awareness Day, is closest to my own heart. I suffered from this illness for six years and it changed my life forever.

I prefer the other term for CFS: myalgic encephalomyelitis. Gives it that extra weighty bite of seriousness :)

Richard Stubbs interviewed Marg Purcell today on radio 774. She contracted CFS two months before I did, in April 1999, and is still sick. She was an athlete before she fell ill. Me, I'm one of the lucky ones. My CFS started around June 1999, when I contracted glandular fever which just never really went away. From memory (hilarious in-joke) it took me a couple of years to get a diagnosis. CFS is a bit of an empty diagnosis to have though. And that's if you can get one in the first place. Unless you hit upon a good doctor, you will have to go through the hell of trying to work out what is wrong with you while the GP who sits across the desk from you quite possibly believes there is nothing wrong with you that an antidepressant and a trip to the psychiatrist cannot fix.

This is where my extreme mislike for the medical profession began :) Doctors are as caught up in the system as anyone. To think that there are still GPs out there with this view after all this time shows how elephantine the system is when it comes to changing perceptions and keeping up, chaps.

In the interview above, one caller said they worked in a 12-doctor clinic where none of the doctors believed CFS was real. Well, I can tell you that the fatigue, muscle aches, flu-like feelings, brainfog, memory lapses, immune system suppression (but in my case, elevation, which meant continual painful golf balls on the side of my neck, ouch), nervous system disorders, autonomic nervous system stuff-ups (causing things like inability to regulate body temperature), adrenal overload, spending all the next day on the couch because you walked for half an hour today, anxiety, digestive problems (causing bloating), regular rapid heart beat and light sensitivity are very real, thank you very much.

The CFS Awareness Day I remember was where I agreed to help man (woman) a stall in a shopping centre. One woman bobbed up to me, listened to me talking about what CFS was, and then trippingly and gaily said, "Oh, I think I might have CFS. I'm so tired all the time!" After which she flubbered off for a bout of shopping.

Which left me feeling pretty good because hey, feeling tired is actually a pleasant, relaxing feeling. But the tiredness that accompanied CFS, at its worst, felt like the marrow was leaching out of my bones. At my very worst, having a shower tired me out for a whole afternoon.

I am so grateful that I recovered. It takes an iron will and determination to keep trying that extra thing. I was one of the lucky ones whose CFS was most likely precipitated by bacterial/viral infections (like rickettsia, for example). It took me a year of rather psychologically hellish ongoing antibiotic treatment to clear those infections up, and then once I did, my body was able to slowly begin healing itself (along with squillions of bucks' worth of nutrition and supplements and stuff once my body began being able to absorb them properly).

I can't believe that people still trot out the line that CFS sufferers are malingerers. I understand the misunderstanding. I don't understand why it still exists. For one, it is often the go-getter types who contract CFS to start off with. Marg Purcell was an athlete before one day she suddenly felt unwell. From there on, she has never regained her health.

I am of the foolhardy and pigheadedly stubborn belief that many people are able to recover from CFS. There must be a stubborn insistence on trying new things, new areas, in learning to listen to what your body is telling you it needs. It is like a full-time job with no accolades. It is difficult to tune into our bodies in this society when we are healthy. We are trained in many ways to switch off. Many healthy people are unable to discern even what their guts are telling them, and often we treat the symptoms instead of the underlying concerns.

To tune into a body whose brain function is causing you to feel as if you are constantly in an out of body state is extremely difficult. Many people give up on a cure when they have been ill for so long and seen so little results. Most realise that they must learn to accept their condition - which feels like accepting the unacceptable. It took me years to learn to accept. I strongly believe that acceptance of the illness is a necessary road toward health. There is no way of living with CFS aside from living in the reality of the present, of the good, small things, as Margaret mentions - the great cup of coffee. This is how the approach must be made toward getting well, also. The small, slow, tiny steps.

Perhaps CFS really is a life sentence for some people. Whichever way it is, it would be a hell of a lot easier if you broke out in spots on your really bad days, like Richard Stubbs said, if it would garner a bit more compassion. Because you can't see how people crash the rest of the day after they have mustered up the adrenaline to talk to you. You can look at them and think they are looking good. I do it now with my friend who is still ill. If I didn't know from inside experience how unwell she is, I would probably forget that she is sick. But I do, and I know this - you gotta take our word for it. If I could bottle up how it feels and give you a dose, you really would help people out with this condition, and with compassion. But I can't. You have to just take our word for it.