Rare disease day – where do I fit?

Today is rare disease day.

My Facebook wall is filled with moving and inspiring stories from people with rare (and in most cases invisible) diseases. As I read them all an all too frequent thought enters my mind…where do I fit in?

Over the past 2 years I’ve been put in a range of boxes: ME/CFS, narcolepsy and EDS. But I never fit nicely into these boxes, it’s like I’m just shoved in with not really enough room to really fit in there. Each diagnosis I’ve received has been shadowed with a “it’s close enough to what you’ve got”. So whilst I have these diseases to relate to, the truth is…none of them are a definitive answer to my 12 years of questions.

I know I should be thankful that none of my symptoms are individually bad enough to fully classify me as having these diseases, but it is human nature to yearn for a sense of belonging. Of course I’d much prefer to belong into the “healthy” group, but short of that…I’d like to belong somewhere.

With each diagnosis I’ve joined a number of Facebook support groups. Of these groups, only one feels like I belong. It feels like home. So with that group in mind, today I will discuss narcolepsy.

Narcolepsy isn’t a lack of sleep. It isn’t psychological. It isn’t like in the movies. Narcolepsy stems from a loss of cells within the brain (and no, I haven’t killed off my brain cells and I’m not brain-dead). This particular part of the brain helps to regulate the sleep/wake cycle among other things. So instead of daylight telling my brain that it’s time to be awake and night telling it it’s time to go to sleep – it works off its own system that it appears to just make up as it goes along. With the aid of stubborn determination and very powerful medication I get through the day without falling asleep. So while I may appear alert and capable of getting through a day with ease, the truth is, for 12 years I’ve worked my way to an Oscar worthy performance of being “awake”.

There are only a select few who have seen what has become the “real” me. I don’t hide my true feelings and pain from you because I don’t trust you, I hide it because I don’t want to be that person 24/7. I live with the fear that if I cave into these diseases, then I won’t ever leave my bed and I’ll be trapped.

I much prefer being the best damned actress I can be and enjoy and live life to the best of my ability.

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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.