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 feet  – don’t be alarmed…this is just my “headache”.

A day-in-the-life of a narcoleptic

I’ve recently been asked to write a post about what narcolepsy actually is and how it affects me. Given that for me my narcolepsy is coupled with diagnoses of depression, hypermobility and chronic fatigue syndrome it is sometimes difficult to distinguish which symptom goes with which illness – but I’ll give it a go. The thing is, many people with narcolepsy also suffer from the aforementioned and similar illnesses. In fact, in an article published in Med Page Today on June 6, 2013, it was discussed that “patients with narcolepsy had a substantially higher incidence of…comorbid diseases”. In the study it was found that people with narcolepsy were:

  • 3.7 times more likely to have nervous system complications
  • 3.8 times more likely to have a mental illness
  • 2.7 times more likely to have a digestive illness
  • 3.5 times more likely to have a musculoskeletal problem
  • 2.2 times more likely to have a genitourinary illness

Given these numbers, it is highly unlikely that you would ever come across 2 narcoleptics with an identical list of health complaints. So whilst I will now endeavour to explain my narcolepsy, please note that it won’t fully match that of any other accounts you may come across.

The most common symptom for those with narcolepsy is known as Excessive Daytime Sleepiness or EDS for short. This is probably the hardest symptom for people to understand as “everyone gets tired during the day”. After all they don’t call it 3.30itis for nothing! Yes, people naturally hit a lull mid-afternoon, but EDS is a whole new level of siesta sleepiness and it doesn’t only hit mid-afternoon. It will hit multiple times a day, regardless of how much sleep we’ve had and it will hit hard!

Now, before you suggest an earlier bedtime, more caffeine, a better diet or more exercise…it is not that simple. In fact, it is often recommended that caffeine be avoided by people with narcolepsy.

I won’t go too far into the science of it all – but essentially there’s a part in the brain dedicated to regulating the sleep/wake cycle. Studies have found that in narcoleptics a large chunk of these cells have died which therefore prohibits us from being able to keep with the natural flow of sleep. This is what causes us to want to sleep multiple times during the day and wake multiple times during the night.

Levels of tired are not easy to explain or understand, but it is said that a healthy person would have to have been awake for 48-72 hours to feel the same level of sleepiness as that felt during an EDS episode. It is this symptom that causes us to easily fall asleep at any point during the day in any location. It’s not just the overpowering need to sleep that is felt here, it’s the physical and mental pain that comes with this level of exhaustion such as:

  • Brain fog
  • Confusion
  • Lacking concentration
  • Headaches
  • Muscle weakness
  • Nausea
  • Heightened emotions

Another thing with EDS is the type of sleep had during a nap. Those who have studied psychology would know that there 5 stages of sleep. There is non-REM stages 1-4 followed by a REM stage. REM usually occurs after around 90 minutes and is typically when dreaming occurs. For people with narcolepsy REM starts a lot earlier in the sleep period. During a short nap a person shouldn’t hit REM – those with narcolepsy will often have periods of REM sleep showing in the 4 x 30min naps they have to take during their diagnostic sleep study.

Given that each stage of sleep has its own restorative purposes, it is of little wonder that people with narcolepsy awake feeling unrefreshed and suffer a realm of other illnesses.
NB I haven’t read any studies around this point – but it’s an interesting hypothesis I will be looking into further.

So typically that’s my main experience with narcolepsy. It may or may not sound like much, but if you can imagine living your life with the EDS symptoms you can see how disruptive it can be to your work, social and family life. Even one late night can exacerbate symptoms for days or even weeks if there hasn’t been a chance to catch up on sleep and rest.

In addition to EDS there are 3 other symptoms common for people with narcolepsy. There is cataplexy, which occurs in about 70% of those with narcolepsy and sleep paralysis and hallucinations which are somewhat less common.  Only 10-25% display all four of these major symptoms during their illness.

Personally, aside from EDS the only other symptom I have experienced is sleep paralysis and hallucination. Even then, I’ve only had one episode of this.

As I don’t have cataplexy, I don’t really want to comment too much on what it is. Essentially it is a sudden loss of muscle control, causing the person to stumble, fall or collapse. It is typically triggered by emotion whether it be through laughter, anger, sadness, surprise or any other range of emotions. This website gives a bit more detail into the condition.

So there you have it. Quite the essay, I know, but it just shows that it’s not as simple as it seems in the movies. It’s a lot more complex and debilitating than many people realise.

My meaning of tired

I’ve been struggling a little bit lately with a feeling that people don’t understand what I mean when I say “I’m tired”. So I’m going to attempt to explain what it is I feel.

My “awake” time
You know that feeling when you can barely keep your eyes open because you’re so tired? Or when you’ve had a few late nights and get to Sunday afternoon and just have to have that nap?
That’s me when I’m “awake”. It’s not always quite this bad, but at least half of my day is with that feeling.

So if that’s me awake…what is my “tired”? This one is a bit harder to describe, but I’ll give it a go…

My “tired” time
This is more the feeling you would get if you’ve pulled an all-niter, had a full day in the office where you’ve had to sit through numerous meetings and remember a whole list of facts and figures, then gone and run a marathon. Your body aches, your mind is mush, you can’t process anything that is going on around you, you feel dizzy and downright exhausted. You get so anxious that if you don’t go to sleep right now you’re pretty sure you’ll start to cry.
This is me when I’m tired. This usually hits me at about 9pm.

So if I say I’m tired, or if I bail early on a party (if I get to it at all), or if I suddenly shut off halfway through a rehearsal or dinner…this is why. This is how I feel.

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.