Coming Out of Hibernation
This winter has been difficult. It feels like it's been going on since time immemorial; sometimes when I get really down and draggy I try to remind myself that it was only nine months ago that I was at FSG, and it was hot and sunny, with lots of daylight hours and a sense of community. Winter, for me as well as for many others, is lonely and isolating. When I had my nervous breakdown in 2000, I learned that mental health facilities are usually busiest in the early spring, because so many people think "if I can only get through the winter, everything will be okay". Then they get to spring and no big catharsis blows their depression away.
I had a crisis moment two weeks ago. The winter, she was eating me alive. With no big events on the horizon, and my health being pretty poor, I had no reason to get dressed, and plenty of excuse to stay in bed all day. That was a strange maze all by itself - figuring out what was health-needed rest, and what was depressive-lead surrender. It's also in the name of spoon banking - the more rest I get now, the better off I'll be in a few weeks when spring comes around the corner.
So how does someone who is chronically ill do when it's time to get out of bed or lapse into clinical depression?
I took it in small steps. I started by turning off the television for small periods of time, and finding other things to do. Time eases by when you're pasted to the boob tube; it's an analgesic for people with too much time. At the very least, I could read informative books, or maybe start to write something in small doses. Somewhere along the way, the internet became too much stimulation for me, but since so much of my life is tied into being active online, I needed to give up giving up the internet too. So now I'm spending some time online, even if it's just reading facebook updates, or researching where a local curling club is (there's one in Laurel, and i'm totally going).
Then I started trying to be more proactive when I was feeling well, and understanding that my "well" may not be "up for hiking Mount Everest", but "well enough to go to the grocery store with someone, rather than just rely on them to go for me". It gave me reasons to get dressed, stuff to look forward to, and a feeling that I was engaged with my existence. I'm blessed to have people who are willing to keep me alive when I can't do very much, but it can almost be hurtful when it's time for me to invest in my own experience. It's difficult because I really shouldn't drive, and right now we only have one operational vehicle, so I'm still sort of reliant on others to go out. I hope to change this when the weather turns - as I build up stamina, I'm hoping to get back to walking, even if it's small amounts.
It's hard, because I still legitimately need to beg out of some stuff when I'm feeling less than well; recently I had a really hard time with one of my medications going haywire that left me unable to engage just about every other day (it seems we have that fixed now, but for a while there it was really hairy). It can be challenging to explain to someone that yesterday I felt well enough to go do something fairly social, but the next day or a few days later I'm back to not being able to be active for more than 20 minutes at a time. I wish I could be more steadfast and reliable - being "reliable" is stupidly important to me - but I have to accept the reality my body gives me, no matter how much I wish I could change it through will alone.
I also find looking forward difficult. I want to commit to doing lots of fun things, and moving ahead with projects, but there's not a lot of constancy in where I'm at healthwise, so I hang everything on the "...if I'm feeling well enough to." I hate that more than I can say. I think even more than getting a diagnosis, these days I'd be happy if I just reached a place where I knew what I was capable of, and could plan accordingly. Even in the midst of feeling well enough to be out and about, I've had some spectacular crashes where all of a sudden, I need to take to bed without a lot of warning.
I know this is all part of a larger ordeal; I've accepted that a while ago. And I know that all these little steps to pull myself out from the quagmire will take me fairly far as long as I hold onto my patience. A lot of what I am supposed to be learning from all of this is true patience - not just the kind of waiting when you know what the payoff is, but the harder kind - waiting, knowing something will happen, but you're not entirely sure what. Just waiting for waiting's sake. To be present and aware of the wait, to allow your experience to be of the waiting, not of the expecting. I've given up on expecting.
That all being said, the good news these days is that I have an appointment to meet with a big wig neurologist at Johns Hopkins, and there's some hope that they will continue to explore whatever it is that has me until we have a name for it, or at least a reliable treatment plan.
So there it is. I'm not reading livejournal any more than I was before, and this post isn't an indication that I'll be changing that. I drop in every so often, when the mood strikes and when I have some time to rack up. That being said, I appreciate that you took the time and care to read this, and I truly love the people I have in my life who care about my well being, my journey, and what I have to say. Thanks.
I had a crisis moment two weeks ago. The winter, she was eating me alive. With no big events on the horizon, and my health being pretty poor, I had no reason to get dressed, and plenty of excuse to stay in bed all day. That was a strange maze all by itself - figuring out what was health-needed rest, and what was depressive-lead surrender. It's also in the name of spoon banking - the more rest I get now, the better off I'll be in a few weeks when spring comes around the corner.
So how does someone who is chronically ill do when it's time to get out of bed or lapse into clinical depression?
I took it in small steps. I started by turning off the television for small periods of time, and finding other things to do. Time eases by when you're pasted to the boob tube; it's an analgesic for people with too much time. At the very least, I could read informative books, or maybe start to write something in small doses. Somewhere along the way, the internet became too much stimulation for me, but since so much of my life is tied into being active online, I needed to give up giving up the internet too. So now I'm spending some time online, even if it's just reading facebook updates, or researching where a local curling club is (there's one in Laurel, and i'm totally going).
Then I started trying to be more proactive when I was feeling well, and understanding that my "well" may not be "up for hiking Mount Everest", but "well enough to go to the grocery store with someone, rather than just rely on them to go for me". It gave me reasons to get dressed, stuff to look forward to, and a feeling that I was engaged with my existence. I'm blessed to have people who are willing to keep me alive when I can't do very much, but it can almost be hurtful when it's time for me to invest in my own experience. It's difficult because I really shouldn't drive, and right now we only have one operational vehicle, so I'm still sort of reliant on others to go out. I hope to change this when the weather turns - as I build up stamina, I'm hoping to get back to walking, even if it's small amounts.
It's hard, because I still legitimately need to beg out of some stuff when I'm feeling less than well; recently I had a really hard time with one of my medications going haywire that left me unable to engage just about every other day (it seems we have that fixed now, but for a while there it was really hairy). It can be challenging to explain to someone that yesterday I felt well enough to go do something fairly social, but the next day or a few days later I'm back to not being able to be active for more than 20 minutes at a time. I wish I could be more steadfast and reliable - being "reliable" is stupidly important to me - but I have to accept the reality my body gives me, no matter how much I wish I could change it through will alone.
I also find looking forward difficult. I want to commit to doing lots of fun things, and moving ahead with projects, but there's not a lot of constancy in where I'm at healthwise, so I hang everything on the "...if I'm feeling well enough to." I hate that more than I can say. I think even more than getting a diagnosis, these days I'd be happy if I just reached a place where I knew what I was capable of, and could plan accordingly. Even in the midst of feeling well enough to be out and about, I've had some spectacular crashes where all of a sudden, I need to take to bed without a lot of warning.
I know this is all part of a larger ordeal; I've accepted that a while ago. And I know that all these little steps to pull myself out from the quagmire will take me fairly far as long as I hold onto my patience. A lot of what I am supposed to be learning from all of this is true patience - not just the kind of waiting when you know what the payoff is, but the harder kind - waiting, knowing something will happen, but you're not entirely sure what. Just waiting for waiting's sake. To be present and aware of the wait, to allow your experience to be of the waiting, not of the expecting. I've given up on expecting.
That all being said, the good news these days is that I have an appointment to meet with a big wig neurologist at Johns Hopkins, and there's some hope that they will continue to explore whatever it is that has me until we have a name for it, or at least a reliable treatment plan.
So there it is. I'm not reading livejournal any more than I was before, and this post isn't an indication that I'll be changing that. I drop in every so often, when the mood strikes and when I have some time to rack up. That being said, I appreciate that you took the time and care to read this, and I truly love the people I have in my life who care about my well being, my journey, and what I have to say. Thanks.