Alright, so this whole 'narcolepsy' thing has gotten somewhat out of control.
I am constantly tired, a kind of tired that is difficult to explain but yet so much more than the whole 'everybody gets tired', 'sleep-training twin infants' or 'stayed up for two days straight to meet a deadline'. It even trumps 'spent the night on a bus from hell, kicked off at 4am and then walked all over Paris for 6 hours pushing a twin buggy and luggage' kind of tired.
It's a whole new level of tired.
Take yesterday for example. I woke up on Saturday morning already exhausted. I didn't want to get out of bed, but the kids had Kung Fu so off we went. Kung Fu finished at 10am and I fell asleep in the car, mid conversation. Woke up at the store and yawned my way through Costco, leaning on the shopping trolley to keep myself upright. Back in the car and I'm asleep before we're out of the parking lot.
We then got home, ate a quick lunch and I was overpowered by exhaustion - popping upstairs for a quick cat-nap.
Within seconds I was out cold in a coma-like sleep that lasted 3.5 hours - despite Paul coming in to wake me once by sweetly rubbing my back and cuddling up next to me. When I finally did wake up he was there, holding me and gently trying to wake me up. I was still exhausted - my jaw ached from yawning and my thoughts were foggy and unclear. We lay in bed for another 20 minutes with me falling asleep intermittently yet trying as best as I could to properly wake up.
"We need to get out of the house" I declared, suddenly desperate to get outside into the crisp air - anything to wake up and re-join the family. In an act of iron resolve I called the kids upstairs and told them to get ready to ride their bikes to the park - I couldn't back out and fall asleep now!
By the time I got downstairs everyone was packed up and ready in the car, I more or less sleepwalked into my shoes and out I went, sleeping in the car until we arrived - the blast of cold fall air finally shocking me from my excessive sleep.
But the grass over there under the trees did look inviting...
Enough! I cannot continue to live like this! Needing to get my life back I went to see my Neurologist, who re-confirmed Narcolepsy and prescribed a drug for it, ensuring I was aware of just how rare this is, but that it has been caused by my Neuro-sarcoidosis (thanks, Sarcoidoisis).
"It's an amphetamine," he explained to me, "and may cause some challenging side effects."
Okay, like what?
"Well, your heart rate may quicken, you might struggle to sleep at night and you may become excessively sweaty - due to the quickened heart rate."
Alright. Look at me. The steroids have already made me excessively sweaty (sorry, about my arm-print on your desk there, do you have a tissue I can clean that up with?) and I'm cool with not sleeping at night - I'll just write another book or do another degree or something. No biggie.
"It's an amphetamine," he explained to me, "and may cause some challenging side effects."
Okay, like what?
"Well, your heart rate may quicken, you might struggle to sleep at night and you may become excessively sweaty - due to the quickened heart rate."
Alright. Look at me. The steroids have already made me excessively sweaty (sorry, about my arm-print on your desk there, do you have a tissue I can clean that up with?) and I'm cool with not sleeping at night - I'll just write another book or do another degree or something. No biggie.
"Watch yourself. and monitor your heart rate and mood. You may experience a shift in irrational thoughts or sudden clarity. If you feel suicidal contact your GP."
Well then! So just like my methylprednisolone infusions! Bring it on!
Sunday, October 10th. Thanksgiving Day - with guests coming over. This should be highly entertaining for all.
8:00am - got up with the kids, leaving Paul to sleep. Took narcolepsy drug for first time (had to wait a day for the pharmacy to order it in, UK chemists don't regularly stock this stuff. And like my opiate patches, they required ID just to give it to me.)
Starting pulse rate: 66 beats per minute. I feel tired. I popped in Mario Kart 8 for the kids, curled up on the couch with the dog, grabbed my laptop and started writing to keep myself awake.
9:00am - no change. Still writing, as was distracted by idiotic pictures on google images and watching my kids draw ice skates on stick people. Am feeling discouraged. Please work, please please work. I want my life back. I want my energy back. I want to be able to focus again - these last few months have been excruciating with the sudden lack of... life.
9:30am - pulse rate: Cant find pulse! Wait, wait. Okay. It's here. It's here. 74 beats per minute. Okay, not bad. That's fine. It's getting quicker, but probably from the excitement of not having been able to find it earlier.
11:00am - pulse rate 94. Could be just placebo effect. Feeling quite awake - just made a pumpkin cheesecake, bean dip and prepped potatoes for Thanksgiving dinner. Dropped cheesecake on the floor of the kitchen - dog was surprisingly little help with the clean-up.
Probably still just a placebo effect. Could still use a nap.
12:00 - am still surprisingly awake! No yawns yet, and even have a bit of energy!
1:00pm - Oh. My. God. I don't think my eyes have been this wide in months.
1:10pm - we should move to a farm. We'll grow broccoli and stuff. And have a goat. Maybe a raccoon.
1:45 - just spent 1/2 hour finding perfect hobby farm for sale with a stone cottage - only to then have it pointed out to me that it was in Northern Ireland, which is a rather significant commute. Am wondering if this is all somehow related to my racing heartbeat.
2:00 - Our friend Katy arrived with her daughter Alice, and we chatted and went for a drive and went for a walk and then had dinner and then chatted and I DID NOT RUDELY FALL ASLEEP MID CONVERSATION EVEN ONCE!!!!! I even stayed awake in her car!!!
IN A CARRRRRRR!!!!!
It's now 8pm and I am exhausted and ready for bed - but my day was again one in which I was fully present - which could be a real turning point for me.
One can hope, right?
11:00am - pulse rate 94. Could be just placebo effect. Feeling quite awake - just made a pumpkin cheesecake, bean dip and prepped potatoes for Thanksgiving dinner. Dropped cheesecake on the floor of the kitchen - dog was surprisingly little help with the clean-up.
Probably still just a placebo effect. Could still use a nap.
12:00 - am still surprisingly awake! No yawns yet, and even have a bit of energy!
1:00pm - Oh. My. God. I don't think my eyes have been this wide in months.
1:10pm - we should move to a farm. We'll grow broccoli and stuff. And have a goat. Maybe a raccoon.
1:45 - just spent 1/2 hour finding perfect hobby farm for sale with a stone cottage - only to then have it pointed out to me that it was in Northern Ireland, which is a rather significant commute. Am wondering if this is all somehow related to my racing heartbeat.
2:00 - Our friend Katy arrived with her daughter Alice, and we chatted and went for a drive and went for a walk and then had dinner and then chatted and I DID NOT RUDELY FALL ASLEEP MID CONVERSATION EVEN ONCE!!!!! I even stayed awake in her car!!!
IN A CARRRRRRR!!!!!
It's now 8pm and I am exhausted and ready for bed - but my day was again one in which I was fully present - which could be a real turning point for me.
One can hope, right?
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