Hoarding? Talk Aloud to Yourself?

Discussion in 'Fibromyalgia Main Forum' started by pearls, Dec 14, 2004.

  1. pearls

    pearls New Member

    Dear Friends,

    Hello! I'm back.

    Since I've been ill, I've noticed some strange things, and want to know if any of you have noticed similar things in your lives - to wit:

    1)I have filled every nook and cranny of my house with stuff I've hoarded. To be honest, I've always had a lot of paper around, since I love to read, but since I've been ill, the amount of all kinds of stuff I keep seems to have really multiplied. A lot of it was bought because of my business at an antiques store, though in some ways, this was an excuse to buy lots of stuff. Also, I keep catalogs in case I might need them later, and some old catalogs because they might become more valuable later - which seems silly, since I'm drowning in it all! But I'm fed up - can't stand it - and find it difficult to get out of this mess because, afterall, I'm not as capable of sustaining hard work for long periods of time as was once the case.

    2) When I was much sicker, I was always talking out loud to myself. In fact, the sicker I was, the more I did that. It seemed compulsive. Whenever I flare, I find myself doing it again.

    I'm wondering if these two things are related to my fibromyalgia. I just read an article in the October, 2004 issue of "Science Digest," entitled, 'Conspicuous Compulsion.' It seems that in Manhattan, at least, 10% of older adults were afflicted with hoarding behavior.

    Now, according to the article's author, hoarding behavior is not the same as obsessive/compulsive disorder. People with the former seem to have trouble with decision making and focusing attention. Brains of those with obsessive/compulsive disorder show elevated activity in areas associated with danger, contamination, and order.
    (Some of you might remember that a cardiologist once told me I have obsessive/compulsive disorder -to the amusement of my primary physician and my pain docotor.) What especially interested me was a study involving victims of stroke or other neurological diseases. This group included hoarders who had not shown any tendency towards hoarding until these physical incidences caused lesions in the mesial frontal region of their brains.

    That's not quite me, but I wonder if our fibromyalgia might result in such behaviorial changes as hoarding or talking to one's self? It seems possible to me, considering that our FMS seems to have a neurological basis, which to be sure, is not the same as a pschological origin. What other "strange" behaviors have any of you experienced since coming down with FMS?

    My best wishes to all,
    [This Message was Edited on 12/14/2004]
  2. rockyjs

    rockyjs Member

    There's a program on NPR called "The Infinite Mind" that did a great program on hoarding and clutter about a year ago. Here's the description:

    "When does enough become too much? And why is it so hard for compulsive savers to know the difference? This show looks at hoarding, which involves the accumulation and inability to throw away unneeded possessions, to the point that a home may become so filled with stuff that furniture and rooms can no longer be used for their intended purposes. Guests include Dr. Randy Frost, a pioneer researcher in the study of clinical hoarding and Dr. Sanjaya Saxena, a neurobiologist who is pinpointing where in the brain the problem seems to originate. Author Denise Linn, addresses non-clinical forms of hoarding with tips on how to recognize -- and get rid of -- clutter."

    You can purchase the CD from their website for $15 or download it for $8. It really is fascinating and it helped me understand my mom a lot better. My clutter is in direct proportion to how I feel, but my mom has been a hoarder for years. She always blamed it on growing up in the depression :)

    There's also a great article you can access by typing in the search terms "OCD-UK Hoarding" on Google. It explains that new brain studies show that people who hoard things have a different pattern of glucose metabolism in the brain. Interesting, since my mom had insulin-resistant diabetes and goes back and forth between very high and very low blood sugar.

  3. Juloo

    Juloo Member

    I talk to myself when I'm home alone because it helps me not to forget what I'm trying to do. It works!

    About hoarding -- for me, I don't think it goes as far to become actual hoarding. BUT...I do notice an increase in clutter when the brainfog becomes really bad. The clutter seems to be related to a decrease in the ability to make decisions. Keep this piece of paper? This piece? This old bill? This newspaper? I just can't decide during those times.

    So when I do have a particularly good decision day, I try to make an effort to go through a bag or box of 'unmade decisions'. It's even more effective if I've just watched "Mission: Organization" or "Clean Sweep" first.

    Letting go of memorabilia is hard no matter what. I've taken to photographing an item if it is a sentimental favorite. Then I get rid of the item, but I still have the photo to keep the memories. For some reason, not having something to remind me of the memories is the scariest thing.
  4. mamacilla

    mamacilla New Member

    i am a hoarder, too; i also talk to myself. i've done
    both for years. i laugh when my husband teases me about
    talking to myself, telling him that i'm the best
    conversationlist i know, lol. i do think the brain fog
    plays a part in the decision making process, but for me,
    not throwing stuff away is a form of control --- ie, "i
    might need this tomorrow, or someone might". if someone
    asks for "it", voila, i can produce it. it is
    something i have learned to deal with and am better
    about it. at first, it was hard to know what to throw
    away ==== some things need to be kept!

    i do have lesions on my brain, but none in the frontal

    my extremely healthy sister has absolutely no clutter
    anywhere in her house. she's always itching to come over
    here and "help" me with my stuff!

    very interesting.
  5. pearls

    pearls New Member

    Thanks, all of you!

    First, to Jan:

    I don't know if I can be actually classed as a hoarder, but I sure am feeling like one! My rooms aren't so crowded that we cannot use them, but I definitely had to clean up a lot of stuff before my two children and their families came for Thanksgiving! Unfortunately, it didn't all get put away, but at least they all seemed forgiving of it all.

    The blood sugar thing is interesting. Dr. Devin Starlanyl says many of us have reactive hypoglycemia - not the same as fasting hypoglycemia. She says this involves symptoms that are the result of glucose deprivation in the brain, and that it appears to induce abnormalaties in decision-making processes. I haven't reviewed this material lately in its entirety, but my sense of it is that we become addicted to sugar, and our consumption of it results in our own bodies' chemistry getting out of whack. Dr. Starlanyl says that consuming mostly foods that are low on the Glycemic Index usually helps turn that around.

    And to Juloo:

    I watch "Mission Organization" too, but - as the article I read pointed out, throwing the stuff out or getting organized usually doesn't solve the problem for hoarders. They point out that this problem needs to be solved at the decision-making level. Further - and boy is this sounding like me! - they often cannot decide what they are supposed to be doing, so they may start one thing and end up doing a dozen different things, with none of them completed. The only thing that seems to really focus me is to have people coming over for dinner, which because I am ill, I don't do very often. Aaaaarrrrrgh!

    Now, this next part is positively embarrassing: hoarders are overtalkers (what am I doing right now?). They have trouble deciding how much to say, so instead, they give you every little detail, rather than a simple answer!

    To top it all off, hoarders like having their stuff around them. I do, too. The only problem is I don't know where things are - except for some of it - the part that is organized. And it is messy, to be sure...

    Finally: Memorebelia, Mamacilla! Perhaps you are a genealogist - as am I - who cannot bear to part with memorebelia having to do with my obsession - dead ancestors. There are so many genealogists I've heard saying they used to be good housekeepers, but... My joke was that everything was fine until my genealogy made the house sink down on the corner where my stuff is stored. This is truly hopeless... <grin>

    However, amazingly, this is one area in which I actually am somewhat organized.

    [This Message was Edited on 12/14/2004]
  6. hysperia

    hysperia New Member

    I talk out loud to myself ALL the time - partly because I live alone and this DD has really limited socialising - it seems like I just need to hear a human voice sometimes. Also, I have a lot more stuff lying around than I used to. This is probably different from what you're describing, but I find it just isn't a high priority for me to take up much time sorting through things and throwing them away. Also, when I put stuff away, I often forget I've got it or where it is. If I have to spend a lot of time looking for things, I get tired and frustrated and usually don't have the energy to use it once I find it. So I think some of this behaviour is actually a coping mechanism. Every now and again, when I have a little energy and the clutter is bothering me, I try to sort. But I find the brain fog makes that a difficult task - I can't DECIDE what I need and what I don't. Difficulty with decision making is a known cognitive problem with this DD. So .... I don't know if we're talking about exactly the same things, but my experience is close to yours, so thought I'd share. And also say that this is very new for me - it used to be that I hated clutter and liked things very organised. I'm learning to accept some limitations that way now - but also feel like I need to have more organisation sometimes to get ANYTHING done! Frustrating, like so many other things with this DD!!!!!!!!!
  7. Juloo

    Juloo Member

    Pearls -- I love that you mentioned genealogy. OH BOY! At least I put all my papers in one place. Occasionally I even weed and file. But my eyes are definitely bigger than my processing ability. I've been holding on to two boxes of family photos for nearly four years, swearing I am going to scan and disk them for my cousins. Maybe one of these days I'll actually accomplish this!

    As far as other strange behaviors, I'm not coming up with anything. But I do have a problem with getting a song 'stuck' in my head. It can go for two weeks or more before it fades away. It seems to be hormonally related -- it's another strange symptom timed to coincide w/PMS.
  8. Juloo

    Juloo Member

    Now I can think of a couple more...

    To get to sleep at night, I rub the top of my foot on the edge of the mattress (I'm a stomach sleeper). But I think I've done that since I was a baby, so it it probably not related.

    Also, my husband noticed that I have been running my fingernails over my scalp and through my hair a lot. That's definitely new.
  9. pearls

    pearls New Member

    I've been getting songs stuck in my head for years! I think they call this "racing thoughts," and they really race around in my head! I was a music major in college - classical music is my first love. The music that drives me nuts is usually the most inane stuff imaginable - usually jingles from radio and tv commercials. I do believe, though, that the sicker I get, the more I'm plagued by this demon!

    The same is true of talking to myself, and several other irritating personal habits.

    As to being messy and hoarding stuff, it goes beyond learning how to be neat. It has to do with not throwing stuff out because I might need it someday, indicision, and mindless acquisition.

    Genealogy: I've given the same talk to genealogy groups on four different occassions - and even had a date for another gig until I realized it was crazy in my condition to be traveling 70 miles up the road to deliver it. The subject? Organizing your Genealogy!! I kid you not! Me!!I'd make some jokes about how it buries all of us - including me - and then say that if I could learn how to organize it all, anyone can! It's not a perfect system, but it was a system. My motto is to show some things that can work, ask the group for ideas they may have, and go from there. Two of the groups even asked me back for the same presentation.

  10. Tigger57

    Tigger57 New Member

    You guys are all ME. I hoard. Of course, my brother is starting to joke that I''m going to start hoarding animals (I have 2 dogs and 2 cats in a very, very small house). I shop on line and TV... a lot of stuff I don't really need... I want it, but once it's here it gets put.... well usually in what I call the computer/junk room.

    Talking to yourself? Ha! I get laughed at in my office all the time for that one. I find that my talking to myself and talking outloud it helps me to remember things. Also... I just never shut up.

    Hey, I never knew that songs that are constantly in your head are part of racing brain. Hmmmm, learn something new evey day.

    Also, I have a habit of talking to my self in my mind... complete conversations. Usually I'm asking myself if I'm o.k.... probably because I know what the answer is.... no you idiot your having conversations in your head, talk out loud (pretense is saying I'm talking to the animals), and have more junk and clutter and can't seem to get your butt in gear to clean it all up. Condemned.. I'm condemned... to a messy house and a psych ward when those people who don't understand this DD hear me talking to myself. Sorry for this sick humor... I didn't get anywhere near enough sleep last night.
  11. Tigger57

    Tigger57 New Member

    I know that feeling. I almost just "can't" do things.

    In some ways I'm frozen still.

  12. mejlee

    mejlee New Member

    I believe my hoarding started when I had my first big flair, which was around 12 yrs ago.

    I noticed that I started having this fear that if I let something go I may need it and then what... go buy another one like they suggest you do on Clean-Sweep? With what am I supposed to buy it!! I have very little money because I was not physically able to work.

    Also, I found having something that one of my nieces or nephew needed made me feel important. Because I can feel left out or unproductive in this wonderful new body I have it's nice to know they appreciate me because I can always get them something they need for a project that is due the next day. I feel "NEEDED".

    Talking to myself is definately a side-effect of my fibro. But I found that no one else finds it as exciting as I do that I was able to fix lunch on a given day. I think it's funny that many of us do this.

    P.S. I agree with the talking thing. I don't know what part to leave out in a story so... I will tell every excruciating (<- spelling) detail.
    [This Message was Edited on 01/05/2005]
  13. bunnyfluff

    bunnyfluff Member

    But in some ways, yes. I buy excess amounts of things I use when they are on sale. I currently have 12 pair of "my style" of pantyhose- they were 2 for 1, I usually keep about 50 rolls of toilet paper at a time- sure don't want to run out of that!!!

    I think that I buy excessive amounts because when I fell well enough to shop, I want there to be stuff around for when I don't want to or can't shop. I have certainly had those times- sending my husband is awful!!! He calls me on the phone to check that he is getting the right stuff. Nice, but it takes forever sometimes. And he can't find stuff in the grocery store and calls me to ask what ailse it is in.....

    I am borderline OCD- I will pull stuff out of the trash that should have gone in the recycle bin. I can't leave the house if the bed isn't made- with all 12 pillows in the right order.

    Well.....this is a crazy person disease!! LOL :)
  14. ozmeralda

    ozmeralda New Member

    Can't TELL you what chills this one set off. It's ALL me, the hoarding, the cats (they really ARE great conversationalists) etc.... But add ONE MORE thing to the list. HUMMING. HUMMING endlessly, the same random, self-written tune...

    It is totally annoying to my family.... most likely anyone forced to share space with me, and even to myself. Thought it might be a way to cope by distracting the pain....now.... well.... guess the brain is deeply affected.

    I have come to the conclusion that there is no way in the world that there is a literal way this many people can be infiltrated with this level of epidemic pain, confusion, and almost be totally incapacitated....all the while, we are just of the belief that we are part of a "small" minority suffering from an illness barely recognized as such which has so many names they should call it Medusa's curse..... fibromyalgia, lupus, graves, MCTD, Gulf War Syndrome and on and on and on.... does anyone KNOW what has really happened?
    [This Message was Edited on 01/05/2005]
  15. mejlee

    mejlee New Member

    I do the same thing when I sleep, and I also to the fingers through the hair thing. I have woken up in the morning with a hand full of hair.

    I was sitting in my ENT's office reading a mag. and came across an article that said (the hair thing)was a psych. condition. (As soon as I get my fm under control I deal with that one. LOL)

    By the way, too all laughing at this post, I also have O/C tendancies and a cat...
  16. Shirl

    Shirl New Member

    Seems we all have a little of these two bad habits. I don't talk to myself, but I have five dogs to air my thought too :)

    As for hoarding, I have finally almost gotten rid of that bad habit. If I don't use something for a year, like clothes, then I will give it away. I keep a bag in the laundry room, one in each of the closets, if I see something I have not used in a while I put it in the bag, then when its full it goes (I do NOT look at the items after they go in the bag either :)

    I do have 'collections', books I have over ten thousand, dolls, hundreds, and brick-a-brack my husband brings home for me from foreign countries.

    These are all in order in cabinets and he built special shelves in the kitchen for the things he brings home. I have bookshelves from ceiling to floor in my library, So they do not 'clutter'. He does the dusting of them by the way.

    What I had to learn not to do, and to get rid of was catalogs, advertisements, and magazines.

    I stopped subscriptions to all but two magazines (I used to subscribe to about 15 of them), New American and Time is what I get now. I do not allow myself to order more than two subscriptions at once anymore. I had a habit of hoarding the magazines and the catalogs even after I read them all. But not anymore.

    It took my husband three days to rid the house of all of them :)

    This started when my children were in school, I always had things for projects, then the grandchilden, now I totally quit unless its something really important, I will keep it on the bookshelves, no more file cabinets full of them.

    I also hoarded newspapers, to stop this, I quit getting any daily papers.

    Food was another problem, my husband works for an oil company and is gone for weeks at a time, so I would stock up on food, household items, etc. to the point of crazy!

    What I do now, is go through the pantry, and freezer every month. What I have too much of, I give away. This way things do not get out of hand with the food thing. No more hoarding foodstuff.

    I started the genelogy thing too, wow, that was getting totally out of hand! I did manage to get all the pictures in albums, the information in binders, but I had to quit. It was taking over my life! I have not touch that in almost four years now.

    I was also a semstress before the FM got so bad, that meant a whole collection of threads, needles, fabrics, zippers, patterns, magazines, buttons by the thousands, etc. I finally got rid of all but two boxes of fabric.

    Then the embroidery, I had special binders for the threads, magazines, booklets, every color that was ever out in thread I guess I had! Thats still in a closet, but it is neat.

    All the craft things, and my paints are gone too.

    The gardening, I had a greenhouse, so that meant all sizes of flower pots, they are all gone. It was hard to get rid of these things, but now that they are gone I am glad I finally did it. Less clutter.

    I am 'working' on shoes and handbags. I have hundreds of both. They are neat, but way too many for any one person to own that only goes out a couple of times a month.

    I also 'collected stray homeless animals', I have had as many as 20 at a time, from rabbits to dogs ,cats. even a parrot. Well as the pain progressed, I kept the ones I had till they lived their lives out, and did not replace them.

    The only one I replaced was my last white boxer, she was such a love, I still miss her dearly. But it did take two dogs to replace her, one white boxer and one American Bulldog, which I am now training to be service dogs :) I have one old Pit Bull that is 14 years old, and two mix breeds that I found abandoned.

    I have not picked up a stray in three years, to my husband that is a record for me!

    If this is OCD than I guess I am obsessive compulsive!

    I recently took a test, as I was told I was a type 'A' personality. Well the test showed that I had controlled myself to the point that I am now a type 'B' personality. Made me feel good that I made some progress with my crazy mind............

    If this is part of FM, well it seems a lot of us have it in common.

    This is a good thread, keep it going, makes us feel good to get it all out of our systems................

    Take care........

    Shalom, Shirl
  17. helpeachother

    helpeachother New Member

    Hi, friends. Talking out loud turns out to be good, and to be scientifically useful to us with the brainfog.

    It turns out that when you speak out loud, one part of your brain does the thinking and then to the talking, BUT, you when you HEAR yourself talking, you are then "sending" the info to a part of the brain that can understand through the fog. A weak connection (i have brain lesions, and demylination of the nerve coatings in the brain as well) between two parts of the brain is being gone around when you speak then hear.

    Try talking out loud to yourself BEFORE you go into the next room and say (out loud)"what did I come in here for?"

    You will most likely be able to answer your own question.

    Good luck and be well. Peace
  18. ozmeralda

    ozmeralda New Member

    Also a type "A" personality.... and had thought the reading (books, magazines, backs of bottles) might also be due to a need for "replacement" for a job which kept me quite busy and "in the know...."

    If you have managed to make enough progress to go from A to B..... AND managed to pare down craft and hobby supplies, there IS a best seller and an HGTV show in your future.

    Please expound on your techniques for tackling this!!!!
  19. mejlee

    mejlee New Member

    bump bump bump
  20. Allbetr

    Allbetr Guest

    This message caught my eye as I scanned thru [this is my first time here.] I'm glad now, and suspect there was good reason for that. I thought the hoarding was incidental to me, but I think I'm getting some insight here into both myself and the CFIDS personality. Could you say that we hoard life? I have long seen a common type of approach to life in those of us who have dealt with CFIDS/fibromyalgia, in that we push ourselves till we kind of break. I hadn't thought of this tendency in terms of OCD, but I do see that we all seem to have a gusto for life that one might call obcessive. Choosing between options doesn't seem to be much of an option for me--I need to choose them all. I have a terrible time eliminating--everything is top priority. Nothing can be left out comfortably. I believe this attitude toward life lends itself greatly toward ending up with a body that becomes used up by our enthusiasm. I am well now, after about 30 years of CFIDS disability, but I do still have the same personality, and struggle with the "letting go" issues.
    It was actually much easier for me to let go of something when I was sick, because I had to. When I could go in the past, I didn't ever know when to stop, until my body stopped me in my tracks. So perhaps this is the true cause of CFIDS. : ) I do believe it was huge for me. I am working on letting go of what I can, but it's definitely a process. As to a brain connection, my son, who also had CFIDS, once was tested, to help his aunt earn her PHD, and her work showed both my son and her son scoring close to schitzophrenic, in the sense that they struggled with making choices--in ruling anything out. Both are brilliant. So, if you can mentally handle a great deal, perhaps you are in danger of overloading your body with all you want to take on. And this perspective carries over into many areas of life. I.e.,we become a danger to ourselves. It is a very difficult compulsion to squelch.
    BTW, I have a cat, also, that I love dearly. But then that may go along with the cerebral theory, as cats are supposed to be the thinker's pet of choice--altho I have her because I wanted a sweet lap-sitter. : ) Thanks for all the open input--it was an encouragement to me to see the keeping issues as a common trait here, and not just me. Now that I'm well, I collect the clutter because I don't find the time to go thru it and eliminate, because I'm so busy again, and haven't yet dealt with it! So I feel it's a personality trait that goes pretty deep. Sorry to ramble on so long. See?--I can't leave anything out here either.


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