This has been a long and sometimes tough week for me – yet I feel really silly about saying anything because while it hasn’t been the best week ever, I’m well aware of just how much worse it could be.
I’ve been battling fatigue a lot in the last week – which isn’t a horrible problem, but somehow when I’m tired all of my best coping self goes out the window and I feel frustrated, easily irritated, and generally crabby. I’ve been feeling like I need to pitch a very childish tantrum. Sometimes I just want to rant, and this has been one of those weeks where I want to rant about everything. I want to rant about feeling crappy. I want to rant about the various HPS situations I’m aware of that are particularly tough right now. I want to rant about how unfair all of this is. I want to rant about having to deal with all of it pretty much on my own. I want to rant about how insensitive people can be sometimes.
Why the fatigue? Your guess is as good as mine. Last weekend seemed to be the starting point. When you’re up all night and never really go to bed because you’re not feeling well, it’s like having jetlag. It throws off my sleep cycle for days. It also compounds the many things I have to do because I can’t get them done fast enough. My nystagmus (rapid eye movements) gets worse and it’s harder to read and keep my eyes focusing in one place. This is a real problem if you’re a magazine editor! So, I end up taking work home, not because the work load is too bad right now, but because I feel like I’m putting in eight hours of work and getting only about six out of the day. Compound that with all the freelance work I’ve taken on because I really need the money – and it starts to feel like a pressure cooker, even though in another given week it’s a work load I could easily handle. Deadlines, however, are not the kind of thing you can put off until next week and catch up with later.
I suspect I’m a bit anemic, but don’t really want to take a half a day or more off to go to the doctor and get a blood test. I will if it doesn’t improve, but for now I’m trying a restful weekend – again. It’s also possible I’m fighting some sort of virus. My tummy has been very sensitive all week, and I seem to be running a very low grade temperature off and on. Not high enough to take Tylenol, but just a degree or two above the norm.
It’s the being tired that get to me. I don’t have time for this – grin!
By Tuesday night it already seemed like a Friday. I was spinning. I had a mission committee meeting at church, a commitment I’m reconsidering. I took it on because I felt bad that I wasn’t more a part of my church community and that I wasn’t giving more back – but to be honest, the only thing I’ve contributed is taking minutes and I’ve done a lousy job of that because I’m so tired by the time I get to the meetings. While it isn’t a huge time commitment, I find myself sitting there thinking about the phone calls I’ve got to make when I get home, and the numerous HPS-related things that need to be done. The sad reality is the mission committee doesn’t need me as badly as the Hermansky-Pudlak Syndrome Network. If I’m not on the mission committee, the Habitat House will still get built, and there will still be volunteers for the Crosslines food kitchen. But, when I take time away from the HPS Network to do these other community things, there are real and urgent needs that aren’t getting met.
The trouble is most of the things I do for the HPS Network are done in isolation. I work on the newsletter, draft copy for a marketing piece or a grant or make some phone calls to HPS’ers that need some moral support – and no one in my day-to-day life has any idea what I’m doing, or how time consuming it is. My social life has revolved around my volunteer work since college – and when I withdraw from my local commitments I start to get very isolated. I feel like I can’t win.
In the back of my mind are the many conversations I’ve had about the need to build your support system. How am I supposed to build a support system if no one ever sees me?
It also gets socially touchy in that many of the people around me really don’t have a clue about the HPS half of my life. I learned early on to be careful who you vent to, and what you complain about. People on the whole are very good about short-term support, but they have no idea about how to help with a situation that is long term and will continually cause problems.
Like, for example, feeling so tired this week. I can’t complain to anyone because this happens often for me. I don’t know why. I don’t know if it’s connected to HPS or not. I can’t take a sick day to get better because I need the sick days for the NIH visits, the doctor appointments and the really, really urgent stuff. I can’t say to the people around me that I realize I might seem a little spacey but I’m having a tough week because that quickly gets old. Would I have a job if I mentioned it every time I was having a bad week? So, I compensate by getting up extra early to do work, taking things home and faking it through the day. The frustrating thing is there are times that if I could just lay down for an hour, I’d be fine.
Whine, whine, whine…..
But, this morning I feel better. I’ve got a sinus headache, but it’s mild compared to last night. And, after I was finally able to fall asleep, I slept in this morning and feel much better. And, I got some more great news from Puerto Rico! More on that later!
I’ve been battling fatigue a lot in the last week – which isn’t a horrible problem, but somehow when I’m tired all of my best coping self goes out the window and I feel frustrated, easily irritated, and generally crabby. I’ve been feeling like I need to pitch a very childish tantrum. Sometimes I just want to rant, and this has been one of those weeks where I want to rant about everything. I want to rant about feeling crappy. I want to rant about the various HPS situations I’m aware of that are particularly tough right now. I want to rant about how unfair all of this is. I want to rant about having to deal with all of it pretty much on my own. I want to rant about how insensitive people can be sometimes.
Why the fatigue? Your guess is as good as mine. Last weekend seemed to be the starting point. When you’re up all night and never really go to bed because you’re not feeling well, it’s like having jetlag. It throws off my sleep cycle for days. It also compounds the many things I have to do because I can’t get them done fast enough. My nystagmus (rapid eye movements) gets worse and it’s harder to read and keep my eyes focusing in one place. This is a real problem if you’re a magazine editor! So, I end up taking work home, not because the work load is too bad right now, but because I feel like I’m putting in eight hours of work and getting only about six out of the day. Compound that with all the freelance work I’ve taken on because I really need the money – and it starts to feel like a pressure cooker, even though in another given week it’s a work load I could easily handle. Deadlines, however, are not the kind of thing you can put off until next week and catch up with later.
I suspect I’m a bit anemic, but don’t really want to take a half a day or more off to go to the doctor and get a blood test. I will if it doesn’t improve, but for now I’m trying a restful weekend – again. It’s also possible I’m fighting some sort of virus. My tummy has been very sensitive all week, and I seem to be running a very low grade temperature off and on. Not high enough to take Tylenol, but just a degree or two above the norm.
It’s the being tired that get to me. I don’t have time for this – grin!
By Tuesday night it already seemed like a Friday. I was spinning. I had a mission committee meeting at church, a commitment I’m reconsidering. I took it on because I felt bad that I wasn’t more a part of my church community and that I wasn’t giving more back – but to be honest, the only thing I’ve contributed is taking minutes and I’ve done a lousy job of that because I’m so tired by the time I get to the meetings. While it isn’t a huge time commitment, I find myself sitting there thinking about the phone calls I’ve got to make when I get home, and the numerous HPS-related things that need to be done. The sad reality is the mission committee doesn’t need me as badly as the Hermansky-Pudlak Syndrome Network. If I’m not on the mission committee, the Habitat House will still get built, and there will still be volunteers for the Crosslines food kitchen. But, when I take time away from the HPS Network to do these other community things, there are real and urgent needs that aren’t getting met.
The trouble is most of the things I do for the HPS Network are done in isolation. I work on the newsletter, draft copy for a marketing piece or a grant or make some phone calls to HPS’ers that need some moral support – and no one in my day-to-day life has any idea what I’m doing, or how time consuming it is. My social life has revolved around my volunteer work since college – and when I withdraw from my local commitments I start to get very isolated. I feel like I can’t win.
In the back of my mind are the many conversations I’ve had about the need to build your support system. How am I supposed to build a support system if no one ever sees me?
It also gets socially touchy in that many of the people around me really don’t have a clue about the HPS half of my life. I learned early on to be careful who you vent to, and what you complain about. People on the whole are very good about short-term support, but they have no idea about how to help with a situation that is long term and will continually cause problems.
Like, for example, feeling so tired this week. I can’t complain to anyone because this happens often for me. I don’t know why. I don’t know if it’s connected to HPS or not. I can’t take a sick day to get better because I need the sick days for the NIH visits, the doctor appointments and the really, really urgent stuff. I can’t say to the people around me that I realize I might seem a little spacey but I’m having a tough week because that quickly gets old. Would I have a job if I mentioned it every time I was having a bad week? So, I compensate by getting up extra early to do work, taking things home and faking it through the day. The frustrating thing is there are times that if I could just lay down for an hour, I’d be fine.
Whine, whine, whine…..
But, this morning I feel better. I’ve got a sinus headache, but it’s mild compared to last night. And, after I was finally able to fall asleep, I slept in this morning and feel much better. And, I got some more great news from Puerto Rico! More on that later!
Comments