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.


Road to recovery

Not to get too ahead of myself, but in the past few weeks I’ve noticed a slight change in my health. The main change is the lessened crash after lunch. Don’t get me wrong, I’m still tired, but lately it’s been just that – tired – and not the painful tired I’ve been experiencing the past 5 or so months. I’ve even been able to stay up past 9pm without going into a panic and wanting to cry.

My energy levels still aren’t high (so no marathons for me just yet), but at least the pain has eased. I’ve even managed to get through the weekend (just) without having naps. Usually I’d get to about 2pm on the weekends and need to go lie down. But, in the past weekend, I managed to get through without. I struggled from about 5pm onwards, but even then I was still able to function. 

I think it just goes to show that perseverance pays off. Whilst the advice from some was to simply slow down and listen to my body, I kept on fighting. Mostly out of fear of not being able to get up out of bed again, but I fought none-the-less. 

I’m not saying I’m cured, but even feeling this little bit better is a massive milestone. I’m still going to keep up my treatments and sourcing more information and options, but for now I think I’ve found something that works for me.

For now, I say a big thank-you to those who’ve helped me through the past few months whilst I’ve been at my worst. Especially my family, boyfriend and closest friends. Too often I read posts from fellow CFS sufferers who’ve lost the support of loved ones. I’ve been lucky in being surrounded by love, support and desire to understand me. So thank-you.