Updates

It has been far too long since I updated my blog. I apologize in advance! I have had quite a bit go on. And let’s face it, I am a procrastinator extraordinaire. Top that with short-term memory and you have blogs that get put on the back burner.

Recently I was in a clinical trial for my Narcolepsy. I qualified and was in a double-blind clinical trial. I didn’t realize how hard it would be. I mean in hindsight I did well.

I had to take medication every night before bed. I had a phone diary given to me to fill out every morning. Twice a month I had to organize a ride (a/n: I had my license medically revoked due to my condition) to a city an hour and a half away. One appointment was a sleep study. The other was a follow-up with blood tests and urine sample.

If you’ve never done a sleep study, let me tell you how great it is.

….It isn’t.

You can’t really do much with your face because everything is taped. Getting that gel out of your hair is the absolute worst! But all in all the positives are, I was there so often the administration knows me by name, the technicians are pretty used to the drill.

Just before my clinical trial started, I decided to start trying to treat my narcolepsy and cataplexy in logical ways other than drugs. Before then, nothing had been prescribed to me for the cataplectic attacks. And compared to some Narcoleptics with cataplexy, mine isn’t severe.

I started with, a naturopath, an osteopath and a registered massage therapist who specializes in deep tissue massages. Here was the issue. I had gone to my GP and he said that my feet swelling was most likely hormonal (This is what prompted me to seek out other methods to treat the physical issues).

…Even when I woke up every morning. And my feet ached when I went to bed and my mother who is 31 yrs older than me had more mobility in morning than I did. You can see why I chose to help myself in a healthy way.

My naturopath suggested an osteopath. Amazing. The osteopath took a look at me, got me to stand and asked some questions. Then she laid me on a table did some adjustments. She gave me at home exercises. After the first appointment I felt a little better. After only my 3rd, I haven’t had pain in my feet since.

Granted, I have been seeing an RMT who is also amazing. Told her about my condition and where my pain was. I hadn’t slept so good in so long after my first massage. Putting this out there: If you bruise like I do, you may need to get used to looking like someone beat you up. My legs look lovely with their numerous bruises.

Now, don’t get me wrong. I am not saying this is a cure all. I did all this on the side while taking my medications because I wanted to find ways to cope with everything alongside my meds.

My cataplexy will always be there and my aches and pains. But I can handle it a lot better than I did. And my brain fog is still there but not completely unbearable.

It is okay to seek out alternative practitioners as long as they are educated, knowledgeable and it does not impede your progress.

What I Am Still Working On

Sleep schedule, medications and diet.

Let’s start with the sleep schedule. Look, it’s not that I don’t love sleeping. But I hate napping. I wake up shaky and like I still need to sleep if I over or under sleep. This makes it difficult. And on my busy days, I am still trying to find a balance with the naps.

Medication schedule. Well…Including my vitamins I have quite a few. My thyroid medication can’t be taken with others. And it has to be an hour before I eat or 2 – 3 hours after I eat.

….Yeah. Then I have to take my Modafinil in the morning and afternoon.

Now, the sleep specialist has prescribed me medication to treat my cataplexy AND a new sleep pill before bed. Don’t forget the vitamins!

I think I’m more tired from all the meds! It’s a work in progress but I realized taking my medications on time is the key to better days. If I compare a day where I forget the timing of my meds or forget one to when I take everything as I am supposed to; it makes all the difference.

You are what you eat! Or so they say.

I cut out bread and fast food and let me tell you. My sleep is no different. But, I do feel better with less bloating. I have been increasing my green veggies. Which I love.

Then I realized, I LOVE eating veggies and good food. I am just so lazy. And on my bad days, I found eating healthier and having to prepare my food (as opposed to ordering it), did make a positive change and create a difference. It stirred some motivation in me.

Brain fog, irritability, mood swings.

The three symptoms I could do without.

It is SO difficult to explain to someone why you snapped or had a moment of anger when even you can’t explain it yourself.

I am a very logical thinker. Maybe to the point of it being a fault. And when I snap or get angry for no real reason, I hate it.

However, I have been able to recognize triggers, the onset of a narcoleptic attack (which isn’t just falling asleep randomly btw) and how to try and warn those around me as well as knowing when to remove myself from the situation.

Is it always easy? Eff no.

  • Triggers:
    • loud noise (s)
      multiple noises happening simultaneously
      lights
      someone touching me
      people talking at the same time
      people talking too loud
      being stopped mid-task
      temperature
      when someone says “we’re all tired” when I am trying to: function through a brain fog or post body paralysis morning, can’t get out of bed, am trying to multi-task etc.

    There are more but these seem to be the most significant that contribute to the irritability and mood swings.

    The ones I struggle with are the multiple noises and people touching me. I love hugging my people. But when I am quiet because I am just trying to function and those who are used to me being bubbly and smiley try to “hug” it out of me, I turn into a hose-beast. So, here’s what I have learned to do.

    1. Tell them, calmly and politely
    2. Take a deep breath
    3. Politely as you can, ask for space
    4. Remove yourself from the situation
    5. Have a bath if you can (or whatever else relaxes you)

    If any of the above doesn’t work, well, they knew and you warned them. If there is one thing talking to multiple specialists has done, is that it taught me that setting healthy boundaries is ok.

    Saying, “Please stop” or “Could you turn that down please?” or “I just need a few minutes right now to be alone.” can do wonders. Sometimes telling my friends “Today isn’t a good day for that coffee.” has helped. And try to be cognizant of your tone.

    Even talking through the irritability or the mood swings if you can.

    As for the brain fog, it really makes me more derpy and silly than anything. I seem drunk. I slur my words, can’t remember the names of things, my short term memory is atrocious AND simple problems or reading are damn near impossible.

    Example: My SO and I were working on renovations and I kept calling insolation, drywall. He kept correcting me and it took three times before I realized I was using the wrong word and I knew the difference. But wasn’t aware that I had continued to use the wrong word.

    Basic tasks can be excruciating. Waking up, showering, eating, staying awake, walking somewhere….Even knowing you have to go grocery shopping. So everything becomes a procrastination and a chore.

    Where I find I win, is that I hate leaving things that need to get done. Working at my own pace with a to-do list works wonders.

    Where Do I Go From Here?

    Well, lucky for you readers, I am a work in progress.

    I am currently on Synthroid for my thyroid, Modafinil, Prozac for the cataplexy and a sleep pill that I currently forget the name of. Taking B vitamins has helped with the fatigue and daytime sleepiness, I take Vitamins C and D as well. This has seemed and to be a good pill regiment so far.

    Can I go back to work anytime soon? No.

    I’m functioning, which is great. But when you work at your own pace and are learning to recognize and work within your own limitations (and as much as I am loathed to admit it) it is so different than being in your full-time job.

    It took me so long to understand this. I love working, I love being busy, I hate not doing anything. When a job has expectations and things that need to get done in a timely manner and with respects to the fast-paced work environment; I had to realize I can’t meet those expectations right now.

    That has been the most difficult to admit. Does this mean I will never be able to return to work? No.

    I am determined to get there. It’s why I have been seeking out alternate medicine outside my specialist and my GP (Family Doctor).

    With everything, I am also determined to learn to be patient with others.

    Yep. This is about my patience level.

    I’m learning that it doesn’t matter if they don’t get it. And here’s a good thing I’ve started explaining.

    They say, “I’ve known you for years and you’ve been fine and now all of a sudden you have these symptoms?”

    No, I haven’t been fine. Those “all of a sudden” symptoms have always been there. When I fell or was “clumsy”, that was my muscles that stopped working. The memory loss or spaciness I had was brain fog. The giggling uncontrollably when I was tired? That was my brain checking out. My arms feeling heavy and all the times I said “I have stuff I have to do today sorry I can’t go out”, I was in bed or on my couch. And obviously I could go on with examples. These are the easy ones.

    I adapted to explaining things that were happening with me until I learned what was actually happening to my brain and body.

    If one of your people can’t understand that, then they aren’t your people. Find better support. There are great online communities and resources.

    But, don’t make Narcolepsy your excuse either. Work with it and through it. When Narcolepsy becomes an excuse and not a reason, that’s you giving up. Laugh about it.

    My blog is to be real. Yeah, sometimes I’ll be pissing and moaning about all the crap. I’ll be sharing my inside voice and internal dialogue.

    To be honest, I laugh a lot. I make inappropriate jokes. And I kick ass by not only surviving but living.

    That’s my ending advice for this blog.

    Don’t just survive, LIVE.

    Until next time my readers!

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