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.

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Illness: It’s a costly exercise

Currently I go see the following doctors and specialists:

  • GP
  • Counsellor
  • Sleep specialist
  • Osteopath
  • Chronic Fatigue clinic

Due to this list I have ceased going to a naturopath.

As a general rule I also don’t go to the dentist and thanks to surgery I no longer need to go to the optometrist.

My point is – I see a LOT of people. A lot of people = a lot of money being forked out. Thankfully some are free services, but it still requires time off work to see them. And, there’s also the cost of medication as well.

I’m fortunate in that I’m able to hold down a full-time job, but there are many people who are only able to work minimal hours or not at all. Whilst these people would be on concessions, the costs are generally relative to what income they receive.

To be honest, I’m not sure how we get from one payday to the next. It’s hard work.

There is now word that the government is wanting to change the way in which Medicare works – or more to the point – scrapping it all together. Honestly, I don’t really understand the plan nor have I managed to find any comprehensible information. But from what I’ve read – it doesn’t sound good for people like me.

It’s bad enough that we struggle to find acceptance and help for our conditions, but now it seems we’re set for higher costs as well?

When will we catch a break?

Assessment & understanding

Nearly 11 years after my symptoms started and 1 year after a diagnosis, today I finally had my psychological and physiological assessment for the Austin Health Adult Chronic Fatigue Program

It’s been quite a wait to get my assessment, but I finally got there. It basically consisted of 1.5hours of questioning. Most would think that to be a long time to spend talking about your health, but for me…it was nothing. I could have spent double that time going through the seemingly endless list of symptoms. 

Whilst I have been through the list hundreds of times, talking to hundreds of doctors and specialists, today was the first time I felt understood. So many times I have either felt like I was talking to a brick wall or that I was overwhelming the person/people I was talking to. I don’t question the understanding of my friends or family, but there is only so much they can actually understand. 

Today, I knew that the people at the assessment truly understood me. 

Nearly everyone tells me that I am obviously ‘coping’ given the number of activities I do alongside work and attempting to co-run a household.

Today, despite the word ‘coping’ being used, I was talking to people who knew how tiring and difficult ‘coping’ actually is for me.

Yes, my life is filled to the brim with work, activities, study, friends and family. So of course it would appear that I’m coping because I’m in bed all day. I don’t blame people for thinking I’m healthy enough or coping based on that fact. But the truth is, I’m not coping as well as people may think. Each and every day I remain conscious of everything I do and the subsequent symptoms that go with each action. 

For me, life feels like swimming against the tide during a storm. I’m pushing forward as hard as I can, but one slip and I risk getting washed further out from the shore. And by ‘slip’ it could be something as trivial as not getting the dishes done or only half a load of washing getting put on because of miscommunication on my behalf. Then, with each slip there comes a flood of tears, guilt, hopelessness and stronger symptoms.

So today, for the first time, I was surrounded by people who understood all of this and as a result I was able to get a step closer to figure it out myself. 

Given that, I am hoping that once I start the program in May (hopefully) I’ll personally understand myself a lot more and in turn be able to explain it to others. So stay tuned for more of my ramblings…