Okay, this is what I feel like these days, most days

And the symptoms I have are like the worst that are talked about in the video. I think I made myself worse by drinking the caffeine and going to the party the other day—I wasn’t kidding when I said I rose myself up from the dead. And I’ve been completely bedridden since that day. I get frustrated and feel so alone because I really don’t think anyone has a clue how sick I am, except my husband. Even my siblings who I’ve tried to explain it to show absolutely no concern for me. My mom worries, but she doesn’t get it either. Of course they live across the country too.

It’s been happening for almost two years. I deny it a lot, but when my brother was dying of cancer we both had to sit down frequently when we went out with my sister one day. I was struck then at how debilitated I was. That really I was as debilitated as he was and he was dying.

That was over a year ago.

I occasionally have “good” days. I don’t know how that fits into the classic chronic fatigue syndrome diagnosis. But those days are few are far between now. I had a freak period where I was fine for 15 days in a row a couple of months ago, but the fact remains that most of the time I’m debilitated and have been for a very very long time now.

I’ve had some of the viruses associated with CFS. Epstein Barr and Mono. Anyway…is it the withdrawal, only, or is it CFS triggered by withdrawal? Certainly not everyone who withdraws from psychiatric drugs goes through this. Will I recover?

You know an interesting part of it is that since I’ve been off the Risperdal I’ve been nice to be around. I’m no longer horribly irritable and unpleasant to my husband much of the time. My mental health in many ways is better than ever. My mood stable. Of course there is no denying that living with such debilitation is extremely distressing but it’s different than when the drugs were giving me adverse psychiatric effects and it’s better.

Anyway, I no longer know if I’m writing about withdrawal or chronic fatigue syndrome or worse…sorry.

Update:

Just exchanged emails with the person I’m consulting with regarding withdrawal. She made a couple of suggestions for treatment and assured me I’m not sick from anything other than withdrawal. I hope so. I don’t know that I’ve ever told her my Epstein Barr virus history. Anyway…she has seen this before in people just withdrawing as we saw it even in Kim’s story yesterday.

Nonetheless it is my present reality and has been for a long time.

Again as a reminder, I once said the difference between this and depression, since a lot of people assume enervating fatigue is depression is that I’m dying to do stuff. I’m restless and want to get out of the house, see my friends, work, play, hike…and I CAN’T. Depressed people lose interest in doing these things…I have a ton of interest…and I’m frustrated as hell.

22 thoughts on “Okay, this is what I feel like these days, most days

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  1. I just wonder if it’s not the drugs that hurt us sometimes permanently??

    I’m sorry you struggle with fatigue too…

    I just want to get out of bed right now…it’s been a week I’ve not been able to function…it’s scary.

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  2. I just watched the video all the way through. Thank you for posting it. I related to just about everything in the video. I thought I was fighting depression or just getting old. I do feel guilty about my lack of energy. I’m still able to cope through most of each day, but I’m totally exhaused as soon as evening comes. I can become homebound quite easily.

    Jim S

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  3. well…I’ll take feeling better a little at a time…that would be fine too…I don’t really expect to wake up and be well all of a sudden, though it would be nice!

    for now I simply took a turn for the worse after going to that party…(so I learned a lesson too…DON”T PUSH….but it’s my will to live that made me do it so I forgive myself!—just won’t do it again)

    anyway, because of the turn for the worse I was feeling really angry and sorry for myself today…I don’t expect that to last indefinitely…it never does.

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  4. Gianna,
    It’s a terribly frustrating process, and I remember thinking that it was taking forever. Then one day I awakened and I was truly well…and so it went day after day. I know it will happen for you as well…but waiting sure isn’t easy!

    All my best!

    Love,
    Susan

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  5. Jim I only felt good because I used caffeine…I think that unless one is as sensitive to caffeine as I am it’s hard to understand what it’s like for me to use it…

    It’s truly like an illicit drug…I didn’t “feel good” one day…I was high the day I went out…

    yup, just as if I’d done a line of coke…

    I need to recover to a degree where I don’t need lines of coke in order to get out of the house…

    my body is weak and it took a stimulant to make my muscles move….

    to be clear…my mood is in general okay…except for massive frustration and anger at my predicament which comes and goes…but that too I need to sit with…I need to accept my situation and it wouldn’t be as hard…

    but if anyone watched the video you’ll see that there is profound sense of loss that I’m dealing with…I’ve lost my life…social, professional, physical…

    anyway…it will hopefully come back…and perhaps I’ll have one of my good days again sometime soon…but it’s been a long time this time, except for the caffeine induced evening.

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  6. I am sorry that you contiune to have such problems getting off of meds.

    Some of your syptoms I can not relate to, but some I really can. It’s interesting how you were so happy one day, yet worn out the next.

    I go through that a lot, and have for years. If I have a real good day, I just know I will be just about bed ridden for a day or so afterward. I guess in a way I’m lucky because I have a bad back that acts up and causes me to just lie around for a day or so. So it’s not unusual for me to just lie around. I do return to normal after a day or so of rest. However, being retired, I often do not have to work; I can go with the flow of my feelings and energy sometimes. Somehow I cope with my changing energy levels. Often I do force myself to get up and do a minimum of activity. Much of my mental distress comes from my beating up on myself. Today, I’m just forcing myself to move because of worried about a biopsy. I figure that it’s OK to be bumbed out over this kind of thing. Oh yes, I think coffee has a way of increasing my energy swings.
    Good Luck,
    Jim

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  7. Oh G, if only I lived closer! (nevermind, I’d probably annoy the hell out of you IRL) but seriously, sending all the good wishes & healing vibes your way that I can…
    Unfortunately, all the hugs are virtual, but sincere nonetheless.
    You hang in there babe.
    XOXOXO
    Val

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  8. thank you Sandy…
    I know I’m not completely alone in the withdrawal community with this degree of debilitation, but when I spent the day reading CFS blogs yesterday I really felt like I had more in common with them then the typical withdrawal person…

    I guess the was we can be hopeful is that if it is just the withdrawal perhaps we have a better chance of recovery…

    thanks for your good wishes..
    love to you too.
    G

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  9. Gianna,

    I too feel like I have CFS a lot. But I think what I am experiencing is really die off from Candida or SIBO.

    I am glad that you are sleeping. I was to until I took that Diflucan a month ago. I haven’t really slept much since. It’s not fun.

    In the summer I was seeping for 6-8 hours a night. It was great. But like you I never felt like it was a refreshing sleep.

    Don’t give up hope. Once you are completely off these drugs you will be able to really focus on nursing your health back. Getting YOU back! Things will improve. You’ll see.

    Love,
    Sandy

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  10. Maybe having people over who are willing to just sit and talk for a little bit would be a good thing…sometimes I find that even if I’m tired, a little social interaction will perk me up. You can experiment with it at least…if it makes you feel worse, you’ll know it’s too much for you right now. Wish I lived near! I come and sit with you for a bit!

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  11. thank you Jazz…that’s what I really need is lots of hugs..and I wish people would come over and give them to me…

    for some reason people who I used to hike with or go out with aren’t keen on coming over and just hanging at the house…

    but my husband just suggested I start asking people to visit me…I can lay down and be a vegetable…and have company at the same time…

    I’m gonna try that. though social energy…mental energy is in short supply too.

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  12. k,
    I just looked back over your comments…you quit Lamictal on 8/16/08.

    I attribute the triggering point of this really awful fatigue to when I first started withdrawing Lamictal…almost two years ago…I had 400 mg to taper…I have 12.5 mg to go…

    anyway…you said you were fine when you first got off, but I’m betting it’s the lamictal withdrawal that has kicked in…in any case it does pass for most people I think…

    as Jazz noted above…she was sick for a few months…and it passed…wonder if I should have gone much faster now…maybe getting it the hell out of your system and then just taking the time to heal is the key…

    I really hope you get better soon…eat well and all that good stuff!
    best to you.

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  13. Hi K,
    Yeah, I don’t have IBS either….not anymore…that is something I did manage to cure myself of over two years ago now…

    I’m currently waiting on results of bloodwork right now…got a metabolic panel and I’m doing hormone testing on day 21 of my cycle…

    yeah, I don’t trust doctors at all…but I don’t mind getting information from them…like bloodwork…I often don’t take their advice though…

    thanks for you support…

    I’m sorry you too feel this way too…here’s to it passing for both of us…

    Susan,
    of course saying you hope I’ll feel better soon is fine…good wishes are always welcome…

    though I really don’t know how I”m being inspirational at the moment…

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  14. Wow, the first part described me except the IBS and anxiety. I have been sleeping and sleeping, only to wake up exhausted. I got lost in a relatively small store that I have been in a number of times, and I can barely stay awake for more than a few hours at a time. Sometimes I can’t hold my head up. I cry because I get so incredibly frustrated with how tired I am. Like you, I WANT to do things. Most of the time I force myself to stay up, but it’s not working so well anymore.

    It sounds like you are much worse off, and have been feeling this way longer, but I know it sucks.

    Perhaps you should have an ultrasound or MRI or something, given your endemetriosis, maybe there is something more that is causing you to feel so crappy….Maybe worth a look? Have you had a blood test lately to check levels of things that are important?

    I don’t go to the doctors unless I think I might be dying, but I also know that mine is directly related to Lamictal, and then I just went off birth control as well, which I am SURE sent my hormones for a loop.

    I wish there was something I could do or say, but I know there isn’t. Take care–

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  15. Gianna, I don’t know what to say, I hope you feel better doesn’t seem to cut it.

    Just sending you healing thoughts. and keep on… keep on.

    You are an inspiration to all of us.

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  16. Hi Sally,
    I try to keep going, but the fact is, I’m not getting better, at least not in the last couple of months, I’m getting worse, and it’s hard to even sit…I literally sit propped up in bed and my arms and hands find it difficult to type from the weakness…

    I’m sorry I know you live with great pain too. and I know mine no worse than yours…truly…

    I just get so tired I don’t know if I can keep doing this. Of course, there is nothing else to do so my sheer will to live keeps me going, since that is strong…

    but Jazz, no, I’m not getting better, I’m sorry. And it feels shitty to be told that…talk to my husband sometime about how he has to take care of me…I was still able to cook most nights a couple of months ago…do occasional grocery shopping trips…it’s all becoming less and less frequent…he does more and more…he is taking care of an invalid.

    I’m not saying it won’t turn around but it’s sure as hell not clear that it will at this point.

    I know you were bedridden for months from Lamictal..and I’m not saying I’m any worse off but it’s been going on for 2 years essentially and lately I’ve gotten more profoundly debilitated…

    anyway…like I said, I don’t think most people can really imagine the level of debilitation. And that sucks…just makes me feel more alone.

    but yeah, I hope it is the withdrawal and that it will pass.

    forgive me if I feel like it’s futile. Imagine not having been able to make a single commitment to anyone or anything for two years. Imagine being a total social butterfly and no longer ever seeing anyone…imagine having no responsibility because of being unable to follow through and therefore no sense of purpose.

    I am dealing with major losses and I have no idea when or if they’ll be reinstated.

    I know that everything can change at anytime. I work really hard to be well. I sleep well these days…that indeed is an improvement over 6 months ago…but it’s a sleep in which I still never feel rested, I am nonetheless grateful for it because it was worse when I didn’t sleep.

    anyway, maybe I sound like I’m feeling sorry for myself and sometimes I do, but I challenge anyone who cannot get out of bed for more than a few minutes a day to feel otherwise. There is not choice or will involved in complete enervation of all my muscles…this is my reality.

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  17. Gianna–
    Well, I don’t know about your case in particular, but when I came off Lamictal, I was so sick and tired…pretty much bedridden, hubby had to do everything, including cook dinner. Even microwaving a can of soup for the kids was too much for me. And it lasted for a long time…It wouldn’t surprise me at all if this is withdrawal related.

    I can certainly sympathize with your frustration…the worst thing for me is having the interest and desire to do something and not being able to.

    Hang in there! It’s a long, slow road, but it’s so worth travelling, and I think if you look back over the blog, you’ll see that things are slowly getting better.

    *hugs*
    Jazz

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  18. Gianna, I can certainly empathize with your frustration at your ongoing disability. I have recently had to resign from even the editing work that I was doing for the Florida Peer Network because I can’t even sit for long periods at the computer because it aggravates the sciatica pain. To my mind, there is nothing worse than feeling useless! Anyway, it encourages me to find that you are keeping on with this blog, which is so helpful for so many people, including me.

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