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”.

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Sleep guilt

In the early days of my illness I really struggled to grasp my sudden need to sleep. Over time I’ve learnt to accept it, manage it and understand it. For the most part I don’t have any problems with my tiredness and claiming the “I’m more tired than you” title, even if someone has had a big weekend or a lousy night’s sleep. But today, I felt guilty.

For 2 days my partner has been stuck in the hospital, barely getting any sleep on a fold out chair. Meanwhile I was able to sleep in our bed, sleep longer than a mere few hours and treat myself to coffee and a nice lunch.

After lunch I was asked if I would bring the youngest to the hospital to see his brother. I said no. I wanted a nap. I later woke up and delayed cooking dinner for everyone even though they’d been stuck with hospital food for 2 days. I delayed it because I felt sick and tired.

Enter: Guilt.

I suddenly felt guilty about my illness. Even though logically I know that comparatively I’d had the same lacking amount of sleep as my partner, and that I’m yet to have had 5min to try and rest and recover from a virus that hit me 2-3 weeks ago…I still feel guilty for not picking up the slack and resisting helping out my loved ones.

It’s moments like these that will no doubt plague me through life. How far can and should I push myself to help others – knowing what impact it will have on my body down the track? How will I be able to overcome the feeling of guilt when I can’t help to the extent I’d like? How can I make it up to my loved ones who help me on a daily basis when I can’t return the favour?

Many people with illness similar to mine are called ‘lazy’. It breaks my heart to hear stories of sufferers losing friends and family because of this. But the truth is, we’re trying. We’re trying far more than anyone can see. Thankfully my partner understands me and knows that I push myself further than I really should. In fact he often tells me off for this fact. It still doesn’t save me from the guilt.

Unfortunately the psychological distress that comes with an illness is often overlooked. I even overlook it myself. But it’s something that we all need to consider. Because without the proper care for our psychological state, the guilt could easily eat away at us and the depression can take over.

So whilst I feel guilty today, I’ll work on blocking it out tomorrow.

Auto pilot: living the dream

As I begin to learn more and more about the finer details of narcolepsy, I’m coming to realise that there are more symptoms that I wasn’t aware of or thought I had. One of these symptoms is living in auto-pilot mode. I don’t know how long it’s been happening, I don’t know if it actually is happening, but it’s a possibility that my partner pointed out to me recently while I was at the GP.

I’d been feeling unwell – generally more tired than usual and had an ear ache. My GP asked if there’d been any other symptoms, I said “no”, but partner said “yes”. Apparently just days earlier I’d woken up and just as I was getting up declared that I had the sniffles and felt I was coming down with something. Honestly, I have no recollection of this. But given the fact my ear had been hurting and I’ve since felt sniffly…it’s highly likely that I had said that. This was when I first started to think that maybe I was losing parts of my life. Having recently read that people with narcolepsy can often find themselves experiencing “automatic” behaviour alongside the excessive daytime sleepiness (EDS), I began to give it a bit more thought.

My first major experience of this was when I was handed a fine for having not “touched on” my Myki card (Melbourne public transport ticket) – something I have done religiously every single day for 4 years. When I was pulled aside by the “Metro Police” I was adamant that I had touched on. Essentially it resulted in me leaving the train station in tears because for the first time in my life I had no idea what had happened.

There have since been days when I get to the end of the day and have no recollection of what I have done. I often have to read through e-mails and notes, and check the time stamp on documents to piece together my day.

Of all my symptoms, this is the one I fear the most. I can handle the fact that I’m tired and in pain – but when I start to lose pieces of my day and feel that I’m losing my mind…that is when I get scared. Being only 28 years old I obviously think that I’m far too young to be losing my memory.

Thankfully I’m off to see my sleep specialist tomorrow. I can only hope that this is something she can understand or help me with. Whilst I’m coping with it by writing notes throughout the day – conversations are less easy to monitor.

So this is not to say that you can now try and take advantage of my vulnerability – it’s more a plea to bare with me (and others with the illness) while we piece together our lives.

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.