Thursday, November 03, 2005
I thought a little whine was supposed to be good for you.....
I'm in the mood to complain. If you're looking for something light and uplifting here, please either scroll down until you find something suitable or better yet, go read someone else's blog. Yep, this entry's all about meeeeeee.
I won't name names or anything, but someone made an offhand comment that kinda ticked me off. They said they would be glad when I got back to being my old self because they liked reading my posts then. They probably didn't mean anything by this, but I took that to mean that they don't enjoy reading what I have to say now while things aren't going well in my life. Well, this is the deal: I can only tell tales of fun events when I'm actually experiencing some fun, which ain't exactly happening right now. And pardon me if I bitch and ask for a little support when things really suck. And if I'm stuck in the house with my digestive sytem shut down, my pain levels through the roof and no money coming in, I'm gonna be cranky!
Face it: I was probably a lot more fun when I was able to work and travel and go to the mountains for hikes and photography and go to concerts and hang with friends in restaurants. But most of that is in the past, and I may never be able to do some of that again. That is why the reference to me going back to being my old self really stung, because it's probably not gonna happen. I also used to have enough cognitive function to say very clever and entertaining things, but now I'm doing well to remember what I ate for lunch, let alone being able to describe it in a creative way. I didn't consciously seek to become less interesting, but that is the hand my life has dealt me. So welcome to the new me: you're stuck with it, and so am I.
It kinda reminds me of the thoughtless comments people make when trying to talk to someone who has lost a loved one. You know, standing around at the funeral and making statements like: "He/she would want you to move on". Um, hello? What about the grieving process? The moving on part happens maybe a year later, not before the tombstone is even in place. Well, being ill isn't quite that major, but every time a person loses the ability to do something that they used to enjoy, it's like a small death requiring a bit of time to adjust and deal with it. I'm not saying that I don't accept what has happened to me, it's just that I need maybe a few days to accustom myself to this latest development. Ask a diabetic sometime how they felt right after they were diagnosed. They were surprised, then angry, then maybe didn't believe their doctor, then were depressed about the changes they had to make, and then maybe a month later, they were finally able to accept the diagnosis. So finding out that I will have to overhaul my diet for the fourth time in two years plus try new meds that might not agree with me just so I can take a half dose of a pain med seems like a big deal for me. The past three weeks of the pain med side effect roller coaster have been for the most part hellish. And the fact that I haven't gotten over my latest post-vacation exacerbation hasn't helped a bit.
And while I'm at it, I'm gonna whine about some other people's attitudes that tick me off. Again, I'm not gonna name names. It's this whole need for people to say things like: "You know, if you didn't dwell on your illness, you'd be fine." Again, I'm sure they mean well and feel they're giving you a valuable public service message. But here's a news flash: happy thoughts do NOT cure most autoimmune diseases!!! Yes, there is a lot of power in positive thinking, and I know it is a highly valuable coping skill, but it ain't gonna completely fix me. I spent four solid months in 1998 putting on a happy face, ignoring my fibromyalgia and Sjogren's symptoms and bravely carrying on with my life. Guess what? I only made myself sicker the more I tried to tune the illness out. And now I have so many ailments that I literally have symptoms 24/7. How do you not dwell something that affect every single stinkin' aspect of your life? Pain and muscle twitches affect my sleep. Pain, stiffness and arthritis affect my mobility. I have slow and impaired cognition. My entire digestive process from eating to toileting is affected. In fact, most of my body parts are affected in at least some small way.
And here is one more thing I don't usually comment on publicly: the holidays take a lot out of me. I don't usually mention it because I want to be sociable and not spoil anyone's good time. But Thanksgiving is three weeks away, and I just can't make the rounds this year. Every year, I try to scale back the festivities and just do enough to feel as though I got to celebrate. But I'm at the point where even going to someone else's house and chatting for a few hours is gonna knock me flat on my ass for days. So I've begged off of Thanksgiving, and I'm sorry if this hurts anyone's feelings, but I just can't see me making merry with a plate of mashed potatoes while everyone else gets to eat goodies. Haven't the energy for the forced smiles and polite conversation, trying to think of what to talk about now that I have no job, no income and no social life. Because here's a real problem: I can't discuss my illness openly in certain company without hearing snide comments about it. And how do I not mention certain aspects of my illness when they affect what I can and cannot eat? It's the stress of trying not to tell what's really going on in my life that I think contributes to the utter exhaustion that accompanies the holidays. Those of you who know I'm not faking my illness and are genuinely concerned about my welfare, I apologize for shutting you out along with those around whom I'm uncomfortable. I am hoping that by Christmas, I will have figured out a new diet/med routine and will be able to make some appearances. I hate having to choose between sociability and my health, but that's where I'm at right now.
The last source of stress I'm gonna mention is the financial one. Dan is just starting to fully realize the major changes he's gonna have to make in his life due to my inability to work. Oh, we've been talking about it for several months, but now it is starting to sink in that he will not be able to travel either for fun or to visit family (he is going to Sioux Falls for the holidays this year, but his parents are paying for two-thirds of it). He won't be able to get a new car when the current one wears out. He won't be able to eat out when the mood hits or shop for clothes or any of the other things he has taken for granted since we got married. He's very angry about how unfair this is: he knew on some level that this would adversely affect me, but for some reason, he didn't consider how much he would be deprived as well. I think maybe this is because he's never really done without. I, however, have had rough financial patches in my adult life when I didn't know how I would pay the bills. Still, it is far more difficult to have money and lose it than it is to never have it in the first place. I'm all too aware that we wouldn't be in this bind if I hadn't gotten sick. But it's not like I'm just being a bum and am expecting Dan to provide for me. Where we live, one income just doesn't cut it. I'm also very aware that marriages break up over situations like this. That won't happen to us, but I hope there is some way for Dan not to become too unhappy.
This is not to say that I spend every moment of my life wailing about how awful I have it. Actually, most of the time, I have a fairly balanced view. I know that I have an amazing support system and usually have the mental strength to endure the crummy stuff. But this year has been rough. I'm in therapy trying to emotionally survive the disability process. What is ironic is that for the past four days, I've been trying to write an article for But You Don't Look Sick about what I'm thankful for. I keep writing a couple of paragraphs, deciding it sounds forced and awkward, deleting it and then then getting bummed about the empty screen before me. I do have plenty of blessings in my life, I really do, but I'm too distracted by the crises of the moment to get a good look at them.
And now I'm too fatigued to remember what my point was.
I won't name names or anything, but someone made an offhand comment that kinda ticked me off. They said they would be glad when I got back to being my old self because they liked reading my posts then. They probably didn't mean anything by this, but I took that to mean that they don't enjoy reading what I have to say now while things aren't going well in my life. Well, this is the deal: I can only tell tales of fun events when I'm actually experiencing some fun, which ain't exactly happening right now. And pardon me if I bitch and ask for a little support when things really suck. And if I'm stuck in the house with my digestive sytem shut down, my pain levels through the roof and no money coming in, I'm gonna be cranky!
Face it: I was probably a lot more fun when I was able to work and travel and go to the mountains for hikes and photography and go to concerts and hang with friends in restaurants. But most of that is in the past, and I may never be able to do some of that again. That is why the reference to me going back to being my old self really stung, because it's probably not gonna happen. I also used to have enough cognitive function to say very clever and entertaining things, but now I'm doing well to remember what I ate for lunch, let alone being able to describe it in a creative way. I didn't consciously seek to become less interesting, but that is the hand my life has dealt me. So welcome to the new me: you're stuck with it, and so am I.
It kinda reminds me of the thoughtless comments people make when trying to talk to someone who has lost a loved one. You know, standing around at the funeral and making statements like: "He/she would want you to move on". Um, hello? What about the grieving process? The moving on part happens maybe a year later, not before the tombstone is even in place. Well, being ill isn't quite that major, but every time a person loses the ability to do something that they used to enjoy, it's like a small death requiring a bit of time to adjust and deal with it. I'm not saying that I don't accept what has happened to me, it's just that I need maybe a few days to accustom myself to this latest development. Ask a diabetic sometime how they felt right after they were diagnosed. They were surprised, then angry, then maybe didn't believe their doctor, then were depressed about the changes they had to make, and then maybe a month later, they were finally able to accept the diagnosis. So finding out that I will have to overhaul my diet for the fourth time in two years plus try new meds that might not agree with me just so I can take a half dose of a pain med seems like a big deal for me. The past three weeks of the pain med side effect roller coaster have been for the most part hellish. And the fact that I haven't gotten over my latest post-vacation exacerbation hasn't helped a bit.
And while I'm at it, I'm gonna whine about some other people's attitudes that tick me off. Again, I'm not gonna name names. It's this whole need for people to say things like: "You know, if you didn't dwell on your illness, you'd be fine." Again, I'm sure they mean well and feel they're giving you a valuable public service message. But here's a news flash: happy thoughts do NOT cure most autoimmune diseases!!! Yes, there is a lot of power in positive thinking, and I know it is a highly valuable coping skill, but it ain't gonna completely fix me. I spent four solid months in 1998 putting on a happy face, ignoring my fibromyalgia and Sjogren's symptoms and bravely carrying on with my life. Guess what? I only made myself sicker the more I tried to tune the illness out. And now I have so many ailments that I literally have symptoms 24/7. How do you not dwell something that affect every single stinkin' aspect of your life? Pain and muscle twitches affect my sleep. Pain, stiffness and arthritis affect my mobility. I have slow and impaired cognition. My entire digestive process from eating to toileting is affected. In fact, most of my body parts are affected in at least some small way.
And here is one more thing I don't usually comment on publicly: the holidays take a lot out of me. I don't usually mention it because I want to be sociable and not spoil anyone's good time. But Thanksgiving is three weeks away, and I just can't make the rounds this year. Every year, I try to scale back the festivities and just do enough to feel as though I got to celebrate. But I'm at the point where even going to someone else's house and chatting for a few hours is gonna knock me flat on my ass for days. So I've begged off of Thanksgiving, and I'm sorry if this hurts anyone's feelings, but I just can't see me making merry with a plate of mashed potatoes while everyone else gets to eat goodies. Haven't the energy for the forced smiles and polite conversation, trying to think of what to talk about now that I have no job, no income and no social life. Because here's a real problem: I can't discuss my illness openly in certain company without hearing snide comments about it. And how do I not mention certain aspects of my illness when they affect what I can and cannot eat? It's the stress of trying not to tell what's really going on in my life that I think contributes to the utter exhaustion that accompanies the holidays. Those of you who know I'm not faking my illness and are genuinely concerned about my welfare, I apologize for shutting you out along with those around whom I'm uncomfortable. I am hoping that by Christmas, I will have figured out a new diet/med routine and will be able to make some appearances. I hate having to choose between sociability and my health, but that's where I'm at right now.
The last source of stress I'm gonna mention is the financial one. Dan is just starting to fully realize the major changes he's gonna have to make in his life due to my inability to work. Oh, we've been talking about it for several months, but now it is starting to sink in that he will not be able to travel either for fun or to visit family (he is going to Sioux Falls for the holidays this year, but his parents are paying for two-thirds of it). He won't be able to get a new car when the current one wears out. He won't be able to eat out when the mood hits or shop for clothes or any of the other things he has taken for granted since we got married. He's very angry about how unfair this is: he knew on some level that this would adversely affect me, but for some reason, he didn't consider how much he would be deprived as well. I think maybe this is because he's never really done without. I, however, have had rough financial patches in my adult life when I didn't know how I would pay the bills. Still, it is far more difficult to have money and lose it than it is to never have it in the first place. I'm all too aware that we wouldn't be in this bind if I hadn't gotten sick. But it's not like I'm just being a bum and am expecting Dan to provide for me. Where we live, one income just doesn't cut it. I'm also very aware that marriages break up over situations like this. That won't happen to us, but I hope there is some way for Dan not to become too unhappy.
This is not to say that I spend every moment of my life wailing about how awful I have it. Actually, most of the time, I have a fairly balanced view. I know that I have an amazing support system and usually have the mental strength to endure the crummy stuff. But this year has been rough. I'm in therapy trying to emotionally survive the disability process. What is ironic is that for the past four days, I've been trying to write an article for But You Don't Look Sick about what I'm thankful for. I keep writing a couple of paragraphs, deciding it sounds forced and awkward, deleting it and then then getting bummed about the empty screen before me. I do have plenty of blessings in my life, I really do, but I'm too distracted by the crises of the moment to get a good look at them.
And now I'm too fatigued to remember what my point was.
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