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Gingergrrl, I'm really sorry to hear of all your recent travails! Since shortly after my eye incident, I've been quite out of it, which is why I've been a bit sparse around here. (The eye is fine; it's the PEM that got me.) I was waiting to feel a bit better to write you, but since that's not going to happen before I go to bed, I figure I should do my best here. Fortunately, you've been getting a lot of wonderful advice from everybody else in this thread. As you can see, you're not alone in this at all, as we've all been through similar things. I'm sure that no one who has had this illness, no matter how much they have improved, has not had major setbacks at one time or another. They're just part of this package that we received C.O.D. But though the setback feels like a big deal now, once you're past it, you'll see it more in perspective. Unfortunately, depression messes with both our thoughts and emotions. One of the nastiest elements of depression is the very strong feeling that things will never, ever, ever, get better. If you buy into that, well, that's a very depressing thought, and you get even more depressed! But in reality, that feeling and the associated thought are a lie, and you just have to remember that.
I remember once when I had been taking a new medicine for a couple of days, I was shaving, and suddenly I got hit by the worst depression I ever had (before or since). It was so bad that the very thought of living even another ten minutes was unbearably painful (no exaggeration), and I just
knew that this would be unchanging forever. But then the rational part of my mind woke up, and I had the following conversation with myself:
"Wait a minute! Did you feel this way a couple of days ago?"
"Uh... no."
"Well, what's changed in your life so that everything is so unbearable now?"
"Uh... nothing."
"So why are you so depressed?"
"Hmm... did I start a new medicine recently?"
Yes, I had, and though the PDR had mentioned nothing about side effects of depression or anything similar, I looked around some more and found that this drug destroyed serotonin. In other words the result was the opposite of what an SSRI does.
Knowing this, my depression made sense to me, and it was clear that it had nothing to do with anything happening in my life. Knowing that didn't make it go away, but it made it workable. Now I knew that this feeling was going to go away, and fairly soon, even, because I wasn't going to take any more of that medicine. So I just had to wait it out. At this point, the depressed thoughts stopped, although I was still left with that heavy feeling that's at the heart of depression. But without the accompanying thoughts, and with the knowledge that this feeling was temporary, it wasn't so bad.
You seem to be in a very similar situation. I think that @
SOC's post #130 (right after your first one) is right on - it's virtually identical to what I would say. There's a wonderful book called
Don't Believe Everything You Think, and I'm sure you can see how it applies here. A rather wise man once said, "You don't think your thoughts; your thoughts think themselves." Want proof? Sit quietly and stop thinking any thoughts for two minutes. I think you'll find that you can't. So if these thoughts go on regardless or whether or not you want them to, how can they be the real you? The answer is that they're not. But a lot of these thoughts have the words "I" and "me" in them, and so we reflexively believe them. That's where we get into trouble. We also mistake these thoughts for reality, and react to them as if they represent reality, when actually, they're just thoughts. So when the negative thoughts come up, if you can say to yourself, "That's just a negative thought; I don't have to pay attention to it!", and the same with negative feelings, they may continue, but they will lose much of their power over you. It's a bit like
Alice in Wonderland, where Alice is fleeing from the soldiers made out of playing cards, when suddenly she realizes how absurd her situation is, and says, "You're nothing but a pack of cards!" At this point the soldiers didn't go away; the whole pack rose up into the air, and came flying down upon her. But now they were just an inert pack of cards, and no threat to Alice at all.
I am back in the mode where I keep telling my husband that he would be better off without me and that I am like a weight around his neck that holds him back from having any real future.
There are two things you can do here that will help a lot. First of all, recognize that the only reason these thoughts are arising are that your neurotransmitters are temporarily out of balance. Would you really want to lose your husband due to a temporary imbalance in your neurotransmitters? So when your mind is clear, promise yourself that you will
not say that or anything like that to him, no matter how you feel. Also, promise yourself that you will do your best not to pay attention to such thoughts. That's harder, and you may fail occasionally; that's why I say "do your best".
He gets angry with me when I say these things and he expressed that this over-methylation incident was a "battle" that I lost but that I can still win the overall "war" against CFS.
He's absolutely right. You've got a good one there; hang on to him.
Many times I am able to believe this but this incident has taken away a lot of my hope of getting better.
Just keep in mind that your judgment is distorted by that neurotransmitter imbalance now, and it's going to have a tendency to make everything look hopeless if you let it. Don't. Listen to all your friends here telling you that it's not hopeless.
I have a 12 y/o step-daughter, who I am raising as my own daughter, and I am unable to attend her school functions, take her shopping, or do any of the things I envisioned doing and it is so hard for me to think that they would not be better off without me and allow them to find someone else.
That's tough when you feel that way; I know. But this is more of that subtly distorted thinking. Does your husband think he would be better off without you? No, he does not. Think about why that's true. Ask him why he wants to stay with you. And believe him.
I have accepted that my career is over, I have accepted that I will not have a baby of my own, and I have accepted that I am extremely limited with CFS. The level of functioning that I want is really so low, I would honestly be thrilled if I could get a 50% improvement and if I could participate in activity with them even once a week, it would be good enough.
On one hand, it doesn't sound like you're asking for much. Many of us would be thrilled if we could get 50% better. But you have to be careful of hanging onto that because to the extent you do, your current condition becomes less bearable, and you increase your suffering. The stronger you cling to a goal, the more painful the setbacks are. You have to start where you are (what else can you really do?), and be comfortable with that. That means not judging what your situation is, but seeing that it's workable. It was workable last month; it's workable now. Worrying about how things might turn out does nothing but drain energy; you can give yourself PEM just by doing that. And do you notice that when we worry about the future, we worry about many different negative alternatives, even though only one (at most!) can possibly come true. So worrying is basically just a waste of energy. It's much better to devote that energy to positive things, like getting better. If you do, you just might find that you can exceed your former goals without having to go on that emotional roller-coaster.
It is possible that your levels of SAMe (one of the essential components of methylation) were affected and it is closely associated with mood.
This is the first thing I though of too when reading @
Gingergrrl's main post. I would just say "very likely" rather than "possible", since SAMe is so essential for everyone, and since it has such a big effect on mood.
@
Sushi, we were typing at the same time and I didn't realize that over-methylation can lower your SAM-e. That makes so much sense to me now!
If you were one a decent dose of SAMe and suddenly cut it off completely, that could cause your depression all by itself. You said that your doctor wants you off the methylation protocol for two weeks. I'd recommend giving your doctor a call, telling him about the depression, and seeing if you could go back on the SAMe now. If he agrees, you could considerably shorten this rather painful experience.
@
Gingergrrl, I hope this has been at least somewhat helpful; I'll follow up more later. But since it's after 6 a.m. here and I haven't even had dinner yet, I think I'd better wrap this up. And for those people who asked me questions earlier, yes, I will respond very soon! Thanks to everyone for all the wonderful support you've been giving @
Gingergrrl. And @
Gingergrrl, thank you for trusting us enough to confide what's happening with you. We all wish you the very best.
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