The importance of education

I was recently watching an episode of The West Wing where Jed Bartlet (US President) is unable to move his hands due to his MS. Naturally, panic struck those around him. Of course people would panic. If someone suddenly couldn’t move their hands and the paralysis was making its way through their body you would panic. For most people this is a scary concept that they wouldn’t know how to manage. In this panic it was asked who they should be calling. The Surgeon General simply turns to them and says:

For an MS patient this is the equivalent of a headache.
I mean, who would you want us to call if you had a headache?

This single remark struck me. I could relate to this. Friends and family could relate to this. Anyone with a chronic illness can easily relate to this. Over time we come to accept our symptoms as part of our everyday life. For me it’s perfectly normal to have a multiple headaches a week, daily back and neck pain, frequent muscle pain and constant pain from fatigue. However, if any “normal” person felt any of those symptoms it would often be a cause to call in sick and visit a doctor.

I once saw friend of mine (also with a chronic condition) take of her shoes after a night out only to reveal a heavily swollen, black foot. For anyone not aware of her condition, this would be a huge concern. But for her, it was just the price she had to pay for hitting the town in heels.

Those of us living with invisible illnesses will have days where our symptoms become physically visible and this can cause some alarm for those around us. This is why educating friends, family and coworkers of our condition is so important. If you do suddenly collapse, have a seizure or become paralysed it’s important that those around you know how to handle themselves. It’s not so much about making sure they’re trained to handle these situations from a medical perspective, but more about making sure they know not to panic as this is of no help to anybody.

So talk and listen to those around you. Explain what is deemed “just a headache” to you. If you see me and I suddenly can’t move my neck or back or if I faint or become unsteady of my feetĀ  – don’t be alarmed…this is just my “headache”.

Narcolepsy reflection

Over the past few days I’ve been reading ‘Wide Awake and Dreaming’ – a memoir by Julie Flygare about her life with narcolepsy.

Since being diagnosed with narcolepsy I’ve been on the hunt for information and forums to help me understand more about my condition. Unfortunately this has been hard to find so reading about someone else’s experience with it has been comforting and educational. There were so many symptoms I’ve had over the years that I haven’t been able to fully attribute to CFS. There were also diagnostic questions I’d been asked by specialists, but I wasn’t sure if what I’d experienced was what they were specifically asking about so I’ve on occasion dismissed a symptom or not given it as much focus as it’s deserved.

One prime example of this is around an unusual experience I had one night last year…

I’d woken up during the night (a frequent occurance for me) and went to roll over but caught sight of someone standing in the bedroom doorway. My partner was sound asleep next to me and the kids were at their mother’s so there shouldn’t have been anyone in the house to be standing in the doorway. I tried to scream but nothing would come out. The figure in the doorway just stood there, getting off on the fact I was scared but couldn’t move. I was frozen.

Eventually I was able to release a scream, waking my partner in the process. He immediately turned on the light to find me screaming with my eyes closed.

I was convinced someone had been in the doorway and sure that I was awake. Because I had previously experienced mild supernatural encounters in the past and I was so convinced I’d seen someone, I began to think it was some extreme supernatural experience.

The events of that night still haunt me as I haven’t understood it. But now, after reading about someone else’s experience with similar events, I am now almost relieved to discover it was yet another symptom of narcolepsy.

It has taken reading someone else’s memoir to really understand what it is I’m going through. Medical reports can only explain things so much, it’s not until you can read or hear a first hand experience that it all starts to make any sense.

My only hope now is that I can one day help someone in the same way Julie has inadvertently helped me.

The many symptoms

Whilst the name clearly indicates fatigue being a symptom, there are a multitude of symptoms that make up the disorder. Every sufferer battles with their own unique combination of symptoms. This is the main set of my unique list…

  • Fatigue
  • Headaches
  • Light headed
  • Itchy skin
  • Sinus pain
  • Nausea
  • Chills/sweats
  • Muscle/neck pain
  • Heat/cold intolerant
  • Lack of concentration
  • Short term memory loss
  • Shortness of breath
  • Sensitivity to food
  • Flushed face
  • Hair loss
  • Chest pains
  • Cough
  • Insomnia
  • Disruptive sleep
  • Unrestorative sleep
  • Anxiety
  • Depression
  • Lowered immune system
So if you ever see me and I don’t look so well…this list is probably why.