Don’t resign yourself to a life sentence

Before I begin on my rant, I should clarify that I DO believe that ME/CFS is a REAL illness.

For 11 years I’ve been ill. Possibly even longer, but the symptoms really hit in March/April of 2003. After a few years of no diagnosis I started to think that I have ME/CFS.  Since my ME/CFS diagnosis a year ago, I’ve also been diagnosed with narcolepsy and hypermobility. Both narcolepsy and hypermobility sit within the same realm of ME/CFS so I haven’t discarded it as an illness that I have. But…that doesn’t mean that I’m not still fighting for a different diagnosis. A more definitive diagnosis.

You see, the thing is, there is no cure for ME/CFS. There’s not even really any treatment for it. So whilst it was a relief to have it as a diagnosis, it also sits as a life sentence with little or no relief. I’d never wish it upon anyone! Therefore if I can find a diagnosis that comes with a cure or some form of treatment…I’ll take it! Over the past 11 years I’ve done the following:

  • 4 x naturopaths
  • 1 x osteopath
  • unknown quantity of GPs
  • 2 x anti-depressant medications
  • stimulant medication
  • 2 x counsellors
  • 30+ blood tests (multiple tests each time)
  • 12 x b12 injections
  • sleep study
  • 3-4 ‘specialists’
  • unknown quantity of antibiotics
  • unknown doses of vitamins & supplements
  • gluten-free diet
  • dairy/lactose free diet
  • paleo diet
  • doing more
  • doing less
  • going to bed earlier
  • exercise
  • meditation
  • hypnosis

The list goes on.

I guess what I’m saying is…I’ve tried a LOT of things and been tested for a LOT of things and will continue going along this way. So it upset me yesterday when I read a post from someone complaining about a test that their specialist was sending them to do and saying that it’s pointless because it won’t find anything as well as complaining about other suggestions that had been given to them. Of course there are things that I’ve been told to try which I’ve been skeptical about, but I’ve still tried them. Sometimes I ended up with surprising results, sometimes I came up empty. Either way, I kept an open mind and gave it a go.

Whilst ME/CFS is a relevant diagnosis, given that there are no tests for it and it is often coupled with one or more additional illnesses, I’m not going to settle with this life sentence and I don’t understand those who fight against getting a different or additional diagnosis.

Even though narcolepsy is also a life sentence, I am grateful for the diagnosis because it means that I have access to medication to ease my ongoing pain. And that was a diagnosis that came from a test I was skeptical about.

The other day I found out that a family member of a friend of mine may finally get their diagnosis changed from ME/CFS to something else after many, many years of thinking it was just ME/CFS. This diagnosis can lead them to medication which could have them fighting fit again in a matter of years.

So yes, I may have ME/CFS, but I’m not going to stop looking for another answer.

The beginning of awareness

This blog is more of a personal mapping of my journey with ME/CFS. Having ME/CFS I can’t be sure that I’ll blog regularly, but at least I’ll have somewhere to go if I feel the need to write about my experiences.

I’ve recently been diagnosed with Myalgic Encephalomelitis (or as it’s more commonly known, Chronic Fatigue Syndrome). Since the diagnosis I’ve faced a range of reactions from people. The most common response I’ve had is “Oh I reckon that’s what I have. I get really tired”. Whilst I don’t doubt that these people do get tired, it is disheartening to realise that so little is known about the syndrome that the general public just thinks it’s a matter of simply being tired. Considering the name of the syndrome, this is not surprising.

ME/CFS is in fact a multi-system disorder. In order to get a diagnosis, the patient needs to show a range of symptoms across the immune system, endocrine system, nervous system, digestive system, reproduction system and cardiovascular system. These symptoms vary from patient to patient with varying levels of severity. I personally exhibit around 25 symptoms, with most effecting me on a daily basis. And I’m one of the lucky ones with what would be considered a somewhat mild case. There are people with it who end up housebound or even bedbound from it. So despite the seemingly simple name, it is in fact, quite debilitating.

Over the 10 years of me having this disorder, I’ve lost a number of friends as a result of me being too sick to go out. Where people might see me as being lazy or anti-social, I am actually struggling to function on a basic day-to-day level, and trying to face the added symptoms and stresses that come from being up past my ideal 8.30pm bedtime.
So without harping on about all my symptoms and struggles, I just want to help spread some awareness around ME/CFS and hopefully get people to stop thinking of it as just being tired or lazy. May is awareness month. So this is my bit to help spread awareness and understanding about a disorder even the medical community are still grappling with.