The stress is getting to me.
I thought I was all okay with this Covid-19 stuff, or at least keeping it at a low respectable hum of anxiety that could be managed with the usual methods. But for the past couple of weeks I’ve been in self isolation with my boyfriend after a *potential* contact with the virus, and while I haven’t been too worried about having the damn thing, what I am worried about is living indefinitely in this state of unknowing.
I talk all the time about my reliance on routines. As a person who was taught to feel like a complete mess most of my life, it’s been weird to wake up to this reality where structure is what makes me feel safe and allows me to function. However, weirder still is adjusting to a world where many of the routines that keep me happy and sane are not available to me, and I’m not sure when they’ll be back again.
And I know, as usual, that I’m one of the lucky ones. I have a stable job that I can do from home. I’m not worried about paying my rent any time in the near future. I have people who are happy to support me (when I can be bothered to reach out 😬). But I also know that I’m allowed to feel thrown out of whack, because this is an unprecedented time and it is a little scary to have so many unknowns looming large in the middle-distance.
I have a complicated relationship with sitting around at home. On top of having narcolepsy, I’ve always been a typical introvert, so often I want nothing more than some alone time to rest and recharge. But having spent so much of my life with no choice but to lie around the house endlessly, it can quickly feel like being put back in that old cage. I rely on external structures like work and TAFE (similar to community college for international readers!) to get me up, dressed and out of bed; not to mention giving me some form of social interaction. I have certain specific ways of living that I know work for me, and when it’s not physically possible at the moment it can feel pretty overwhelming.
[I also don’t have much room to work in my place, so the bed always looms large as a temptation pulling me back for another nap. Am I actually sleepy this time or am I just bored??]
This whole situation reminds me of the time I spent working as a freelancer in 2015. I thought it would be a perfect situation to be able to plan my own time and nap whenever I needed. However, when frequently working from home I just started to feel socially stunted and found it really difficult to concentrate or motivate myself at all.
When I finally got back into an office-based role, the relief was palpable. Just to walk out of the house at the same time every day was enough to change my whole outlook on life. It made me feel part of the world again.
Jumping back to the present day, and I’m now faced with either working from home, or not working at all!! At least this time I am blessed to be working for a company that has a lot of respect for its workers and is trying hard to make sure we still stay connected in our isolation. There is still a sense of being held accountable as I still have set hours to work, Zoom meetings to attend and managers to avoid disappointing. It helps.
Part of me feels so lucky, not only for these practical considerations, but also for the lifelong experience of being okay by myself. I feel for those people who really thrive in the company of others and use that as their source of energy. It must be so hard right now.
Having lived with narcolepsy and mental health issues has certainly prepared me for this in many ways, as I am no stranger to the concept of “radical acceptance” – not beating myself up for feeling useless and hopeless in the face of circumstances I can’t change. It took me half my life to get here, and I don’t envy people who have never had to confront this side to themselves until now.
These thoughts of “lacking productivity” can suck the life out of you, and I’ve really noticed the collective sense of grief people are feeling. We need to allow ourselves time to honour our feelings, which our society is not particularly good at.
Other feelings emerge as well. Like the keen sense of worry that being forced back into these home-bound situations will put me right back in the same mindset from years ago, depressed and struggling to function. I know realistically this is almost impossible, as so many concrete aspects of my life have changed to allow for my new mindset, and these won’t suddenly change back just because of a global pandemic. But the fear of old patterns giving way to old feelings is still real.
Fear and anxiety do strange things to the mind, but one of the biggest areas of impact is sleep. You don’t sleep well when you can’t switch you brain off or stop the swirling mix of information and emotional stimuli that are mainlined into your consciousness all day.
I haven’t been sleeping well for weeks, and I’ve recently had a couple of nights where I kept continually waking my boyfriend with my freaky sleep talk and hallucinations. We’ve been together for almost a year and a half and he’s never seen me do this, and to be honest I don’t have any evidence of it happening since I started Xyrem 3 years ago. There’s definitely something being disturbed in this brain of mine when I’m yelling about algebra in the middle of the night.
It’s a funny thing, this pandemic, because it does play with my mind in a strange way. I know what is happening because I follow the news and I make a point to stay informed. Unfortunately “staying informed” can sometimes turn into a bit of an obsession to understand every tiny facet of information I can find, like there’s some special piece that will make life suddenly less confusing and out of control. I know it doesn’t exist but my brain keeps searching.
You would have thought I’d be used to giving up control by now, having lost control over certain aspects of my brain and body years ago, but it only makes me cling to it harder.
I do find it kind of ironic that just as I’ve been figuring out what I’m doing with the important parts of my life (having my own place to live, a stable partner, a secure job and a career I’m excited about, strong relationships with family and friends) this huge overpowering force comes to make everything just a little more difficult again.
I’m nothing if not resilient. It’s one thing I’ve heard many times throughout my counselling studies, that if you’re looking for strengths in a person facing difficulties, chances are they’re resilient as fuck just for continuing to get by. I know I have the tools to get through this and it will be fine, no matter how long things stay uncertain. I will talk back to my mental chatter every day, saying “thanks for your concern but overthinking this isn’t very helpful right now”.
I didn’t really have a deeper point to this stream-of-consciousness ramble, it started out as a post for instagram but I couldn’t contain it! It’s been therapeutic to write honestly. I just hope that some of it is relatable to the other people with narcolepsy out there, and that it helps you feel connected in a time where connections can be spread a little thin. Remember that we’re all trying our best, and just by staying home we are saving lives.
I’m so glad you wrote this and relate in my own way to pretty much everything. I definitely see how it was therapeutic to write! The last two weeks my body has felt like it was running at 50% capacity, but as you said having narcolepsy and dealing with some really challenging ‘pre-programming’ has meant already growing and adapting in some pretty amazing ways that I’m able to come back to. I think offering this connection and validation for others is so important right now & am glad you shared.
Wow, you said everything that I have been thinking throughout this pandemic! I just started Xyrem last night (I initially found you through your Xyrem post) and everyday leading up to this and I know especially now, I keep questioning myself “How do you feel exactly and is this how you are supposed to feel?” Half the time I don’t even know how I feel and I have to remind myself that there is no certain way that I have to feel. I have anxiety and have gone through 2 bad depressive episodes in the past, so I’m trying to keep myself from being anxious about the possible mood effects from Xyrem.