Introductions

Discussion in 'Chronic Fatigue Syndrome Main Forum' started by ProHealth, Mar 3, 2017.

  1. ProHealth

    ProHealth Member

    Welcome to the ProHealth M.E. and Chronic Fatigue Syndrome forums! Please introduce yourself and tell us a little bit about your health situation and what you are hoping to get out of the forums.
  2. hangininthere

    hangininthere Well-Known Member

    I joined ProHealth in 2005, the minute I learned computer. The first thing I looked up was online Chronic Fatigue Syndrome support groups, and found ProHealth right off the bat.

    It was an emotional lifesaver to know that others have CFS difficulties like I do.

    Before joining ProHealth, I was so emotionally isolated and misunderstood by everyone I know over being so utterly sick with exhaustion. Thanks to others with CFS here at ProHealth, I have felt connected and understood and empowered ever since.

    Here's the info that's on my ProHealth profile -

    About Me:

    Gender: Female
    Birth date: 1953
    Location: U.S.A.
    Occupation: Preoccupation

    Chronic Fatigue Syndrome since age eighteen and a half

    Orthostatic Intolerance

    Brain fog, sensory overload, memory and cognitive problems such as can't remember nouns when talking

    Bipolar NOS on the Depression Side since age fifteen

    Anxiety

    Mild Obsessive-Compulsive Disorder

    Attention Deficit Disorder

    Mild Tourette Syndrome

    Type II Diabetes

    Skin Cancer

    And other age-related maladies.

    That's me all over. Hub has affectionately called me his little misery pile, haha.

    Been a long haul health-wise.

    My Interests:

    Hub, son, step-son, friends, and extended family.

    Critter lover to the max. Especially goo goo over cats - cats are my kind of people.

    Follower of Jesus.

    Psychology and psychiatry and other medical issues.

    Social issues concerning justice and injustice - fairness and equality.

    Science - especially human biology and forensics and astronomy.

    Am a voracious reader. Don't have the concentration or strength to hold up a book for hours to read books from library like I did by the armful before going bedridden at age forty-five when the CFS got way worse. But can read every waking moment online - because I'm lying in a comfortable position in my bed, and can flick back and forth from site to site, reading here and there in increments.

    Have always been a reclusive introvert homebody, a thinker not a doer.

    Having kids got me out for some physical fun on occasional outings before I went bedridden to this day.

    Can now only drive slowly on the side streets to stores or appointments a very few miles away once every week or two sick as a dog, since I'm the only driver, with hub as my co-pilot. Can't drive any further than that because of the orthostatic intolerance, brain fog, sensory overload, and cognitive difficulties. Highways are out.

    At the stores, I hang on to the handle of shopping cart with hubby, me in my wheelchair . We're a hilarious sight to behold - we exchange a lot of smiles and laughs and humorous comments back and forth with everyone. I call our set-up my poor man's limo. That's our only socialization, our big trip out to stores. Then I can't move for a week or two after.

    I also have a bigger heavier reclining wheelchair and pillow for waiting rooms, or long ride to far-away doc appointment in big taxi wheelchair bus where I can lay out flat. The leg rests come up and backrest goes down. I can't sit or stand for very long because of the orthostatic intolerance.

    Hub is my stay-at-home caregiver - does all the cleaning, cooking, dishes, laundry, yardwork, runs my bath, etc. And brings me food and coffee and water in my bed in living room which I live in 24/7/365.

    I like to cook and bake, so sometimes I can drag into the kitchen about to faint with exhaustion and orthostatic intolerance and brain fog the whole time and cook up a week's worth of meals for in fridge to nuke up, or bake an occasional dessert that hub doesn't know how to, with his help - he gets out all the ingredients, utensils, bowls, pans, then he puts them all away when I'm done and I dive back into my bed. But he does virtually all of the cooking and absolutely everything else.

    Oh, and I write out the monthly bills to mail and pay some online. I used to be perfectly fine with math, loved my job in a payroll department fresh out of high school before the CFS took me out right off the bat - was so easy calculating the workers' paychecks, with nary a mistake of course. Now have to figure and figure the simplest addition, and get six different sums - and that's with a calculator. Have to figure over and over and over til I think I've finally got it right - what a struggle. Severe cognitive problem with math now, grrrrrr.

    With the kids, loved going swimming, riding bicycle, roller skating, library, museums, zoo, air shows, and goofing around on the tennis court.

    Tennis was hilarious - all of us missing the ball ninety-nine out of a hundred times after the serve, and sometimes even when making the serve. Me and hub laughed hysterically at each other as I leapt through the air like a gazelle and he spun like a top, both missing with all our might. Good exercise chasing the rolling ball across four courts.

    Liked sewing my own clothes on sewing machine - simple hippie midi and maxi dresses and skirts and tops and pants.

    Before I had kids I loved road trips and tent camping at beach.

    My desktop computer is on a table by my bed, with keyboard on my lap and mouse pad on bed next to me, and I recline on pillows and read and type away.

    Enjoy online games Scrabble, crossword puzzles, jigsaw puzzles, Tetris, and Solitaire.

    This support group has been a lifesaver to me. Thanks for being there All.

    Love and prayers from Patti aka Hangininthere

    P.S. I must add an update that I've had two improvements in the past six months, due to chiropractic treatment helping my orthostatic intolerance a bit.

    I can now walk in stores without being about to faint because of the orthostatic intolerance. Still have it, but can manage pushing myself to the max walking around stores. I use a store's electric scooter wherever and whenever available, though. Then back home and dive back into bed and can't move the rest of week.

    The second improvement is I can stand in kitchen and cook or bake real quick without using stool at table. Still have the orthostatic intolerance, but can go in short bursts occasionally in kitchen.

    My caregiver husband has become disabled with sciatica pain and can't bring me food and all. My improvement came in the nick of time. I get my own food real quick now from kitchen, and take out the trash, and carry all the groceries in - then dive right back into bed. It's about killing me, but I'm pulling it off. I've become a little less deconditioned from all the new activities I do. Such as, a few days ago I was able to get up on a kitchen chair to change a light bulb in the high ceiling by myself. Before, hubby had to hoist me up onto the chair and hold me tight so I wouldn't fall from weakness, then help me down.

    Sometimes I don't know how I can go on, but lay there like a limp rag til I can go another day.

    I'm glad I've learned the art of being patient and waiting til I recover enough fumes to go on when I'm in the inevitable CFS flare from Post Exertional Malaise, because I used to panic, thinking I'd never be able to move again. Now I know better, whew. I still start to panic nowadays with pushing so hard now, but remember to remind myself I'll be able to do it again the next week or two with the greatest of effort.
    Last edited: Dec 7, 2017
    gb66, Nanie46, Mikie and 2 others like this.
  3. tamsyn2

    tamsyn2 Member

    Hi Patty,

    Welcome! Sorry you have suffered for so long. Thank god for your kind and caring hubbie. It's sadly a very common story ... I've had ME since about the year 2000, after a strange illness I suffered after returning from travelling in BVI. I ran a high fever for almost two weeks, and had horrible chest pain. My doc said 'flu' but it was nothing like any flu I ever had. Soon after, my body fell apart; I lost my career, my income, my partner .... it took me until 2006 to get a diagnosis, and those years were hell as I kept trying to support myself financially, and to 'treat' myself with supplements, herbs, and other alternatives. None of which helped. Finally I got a diagnosis and some meds. I work a little still at home (I'm a writer and editor) and have a pretty good quality of life within my limits (no travelling, no evening events, no caffeine, no alcohol, no gluten, no work outside my home, no highway driving, limited social life, and none of the things I used to love: kayaking, canoeing, biking, hiking, singing, skiing etc etc For many years, I'd often crash and end up in bed for days. Now I don't crash as much, probably because I've gotten much much better about pacing myself. It's so hard to admit 'defeat' ... took me years. Even my long-term friends don't really 'get it' and after a while, I gave up trying to explain it.

    Anyway, hope you might improve; thank god for laptops so you can read in bed. Welcome to this site; it's been a lifeline to me and many others over the years.
    Hugs
    Tamsyn



    Gender: Female
    Birthdate: 1953
    Location: U.S.A.
    Occupation: Preoccupation

    Chronic Fatigue Syndrome since age eighteen and a half

    Orthostatic Intolerance

    Brain fog, sensory overload, memory and cognitive problems

    Bipolar NOS on the Depression Side since age fifteen

    Anxiety

    Mild Obsessive-Compulsive Disorder

    Attention Deficit Disorder

    Mild Tourette Syndrome

    Type II Diabetes

    Skin Cancer

    And other age-related maladies.

    That's me all over. Hub has affectionately called me his little misery pile, haha.

    Been a long haul health-wise.

    My Interests:

    Hub, son, step-son, friends, and extended family.

    Critter lover to the max. Especially goo goo over cats - cats are my kind of people.

    Follower of Jesus.

    Psychology and psychiatry and other medical issues.

    Social issues concerning justice and injustice - fairness and equality.

    Science - especially human biology and forensics and astronomy.

    Am a voracious reader. Don't have the concentration or strength to hold up a book for hours to read books from library like I did by the armful before going bedridden at age forty-five when the CFS got way worse. But can read every waking moment online - because I'm lying in a comfortable position in my bed, and can flick back and forth from site to site, reading here and there in increments.

    Have always been a reclusive introvert homebody, a thinker not a doer.

    Having kids got me out for some physical fun on occasional outings before I went bedridden to this day.

    Can now only drive slowly on the side streets to stores or appointments a very few miles away once every week or two sick as a dog, since I'm the only driver, with hub as my co-pilot. Can't drive any further than that because of the orthostatic intolerance, brain fog, sensory overload, and cognitive difficulties. Highways are out.

    At the stores, I hang on to the handle of shopping cart with hubby, me in my wheelchair . We're a hilarious sight to behold - we exchange a lot of smiles and laughs and humorous comments back and forth with everyone. I call our set-up my poor man's limo. That's our only socialization, our big trip out to stores. Then I can't move for a week or two after.

    I also have a bigger heavier reclining wheelchair and pillow for waiting rooms, or long ride to far-away doc appointment in big taxi wheelchair bus where I can lay out flat. The leg rests come up and backrest goes down. I can't sit or stand for very long because of the orthostatic intolerance.

    Hub is my stay-at-home caregiver - does all the cleaning, cooking, dishes, laundry, yardwork, runs my bath, etc. And brings me food and coffee and water in my bed in living room which I live in 24/7/365.

    I like to cook and bake, so sometimes I can drag into the kitchen about to faint with exhaustion and orthostatic intolerance and brain fog the whole time and cook up a week's worth of meals for in fridge to nuke up, or bake an occasional dessert that hub doesn't know how to, with his help - he gets out all the ingredients, utensils, bowls, pans, then he puts them all away when I'm done and I dive back into my bed. But he does virtually all of the cooking and absolutely everything else.

    Oh, and I write out the monthly bills to mail and pay some online. I used to be perfectly fine with math, loved my job in a payroll department fresh out of high school before the CFS took me out right off the bat - was so easy calculating the workers' paychecks, with nary a mistake of course. Now have to figure and figure the simplest addition, and get six different sums - and that's with a calculator. Have to figure over and over and over til I think I've finally got it right - what a struggle. Severe cognitive problem with math now, grrrrrr.

    With the kids, loved going swimming, riding bicycle, roller skating, library, museums, zoo, air shows, and goofing around on the tennis court.

    Tennis was hilarious - all of us missing the ball ninety-nine out of a hundred times after the serve, and sometimes even when making the serve. Me and hub laughed hysterically at each other as I leapt through the air like a gazelle and he spun like a top, both missing with all our might. Good exercise chasing the rolling ball across four courts.

    Liked sewing my own clothes on sewing machine - simple hippie midi and maxi dresses and skirts and tops and pants.

    Before I had kids I loved road trips and tent camping at beach.

    My desktop computer is on a table by my bed, with keyboard on my lap and mouse pad on bed next to me, and I recline on pillows and read and type away.

    Enjoy online games Scrabble, crossword puzzles, jigsaw puzzles, Tetris, and Solitaire.

    This support group has been a lifesaver to me. Thanks for being there All.

    Love and prayers from Patti aka Hangininthere[/quote]
    bct and hangininthere like this.
  4. hangininthere

    hangininthere Well-Known Member

    Hi Tamsyn. I've been on this site since 2005, a real emotional lifesaver for me. I posted on this Intro thread when it appeared recently, as an ice-breaker, so that I and others can tell their story. Glad to hear yours.

    I got the flu/bronchitis at age eighteen and a half, and never fully recovered my strength.

    I was bedridden with it the first two years.

    Then I revived enough to function with daily activities, though with great fatigue and effort.

    Then at the age of forty-five I went totally bedridden to this day.

    But I could never hold down a job for very long before crashing both mentally and physically. I think mostly mentally, from my bipolar disorder. I would just burn-out and be unable to keep up the daily work schedule - I just couldn't go on another day - it's called 'decompensation' in psychiatry. I marvel at the people who can work steadily for years on end, such as I marvel at the television news anchors that can maintain their upbeat demeanor day in day out.

    And being older now, at age sixty four, I just plain don't have the physical stamina, either. I'm aging on the early side - you won't see me parachuting at age eighty like some hardy folks do.

    I got Chronic Fatigue Syndrome in 1971, after the flu/bronchitis and never recovering my full strength.

    I've never gone to doctors unless absolutely necessary, such as for antibiotics. I would mention my fatigue to doctors at occasional appointments, to no avail. Even I figured it must be tiredness from depression.

    Then in my mid-thirties, around the mid 1980's, I happened upon a book at the library on the New Book shelf. It was about Chronic Fatigue Syndrome. I knew then what I had.

    It wasn't until 1995 that I got an official diagnosis of CFS from a rheumatologist who had a special interest in CFS. It was such a relief to be validated.

    My extended family thinks I'm just a lazy bum, though, and they still think that to this day. Yes, thank God for my understanding hubby. He can see how this CFS devastates me. With bipolar added to the mix, which is an exhausting illness in itself, I am truly a wreck.

    My extended family suffers Bipolar Depression, too. And all but one are able to plow through and work full-time. That's why they think I should be able to do the same. If they had severe CFS heaped on top of them, they would see how it is. I know and understand and believe how hard it is for them.

    Interestingly enough, though, when my ex-mother-in-law was diagnosed with CFS in her 60's after being treated for depression for several years, she ever so delicately asked me if I thought I might be a hypochondriac. Grrrrrrrr. So she doesn't even understand, even when she has it herself. So weird. She actually had a great improvement for many years when she took the anti-viral Amantidine for her CFS.

    I then tried the Amantidine and the first day I felt lighter and less brain fogged, but it gave me an intolerable side-effect - depression, as listed on its possible side-effects, so I had to discontinue it right off the bat. Amantidine was also given to victims of carbon monoxide poisoning to rapidly increase their oxygen level. My CFS doc said that CFS involves a deficit of oxygen at the cellular level. Too bad I can't take Amantidine.

    My old friends are sympathetic. They all live out of state now, so I don't know how they'd take it if they lived by me, seeing me not able to get up and go with them. I can't even stand visitors while I lay in bed since I went bedridden, totally wears me out trying to converse. I joke that even if they lived next door to me I would still just visit by email.

    Well, I always say that luckily I've always been a homebody, so didn't have as much to give up. No activities or a career or any hopes and dreams dashed. My only aspiration, so to speak, was being a housewife because I liked to stay home. But it taking a monumental effort just to walk to the bathroom and back was not included in my idea of a cozy homebody dream life.

    My CFS doc said that the defining factor between depression and CFS is that CFS has the post-exertional-fatigue. But heck, it seems to me that depression would have post exertional fatigue since it has pre-exertional fatigue, too. Meaning, it's so hard to get up and go with depression and exhaustion even at rest, wouldn't it follow that post exertional fatigue happen, too?

    Patti
    Last edited: Nov 6, 2017
    bct likes this.
  5. hangininthere

    hangininthere Well-Known Member

    Speaking of pacing. I only pace myself when I have an appointment I absolutely have to get to. I have to rest up for days in order to go.

    For my weekly shopping, when I don't have anywhere else to rest up to get to, I run myself ragged til I drop, since shopping trips can be put off for days until I'm able.

    When I was in a wheelchair full-time at appointments, then would get up and walk to nurse's station to ask a question I'd forgotten to ask the doc, they thought I was faking needing a wheelchair.

    It's called pacing.

    I had to sit most of the time to get through the appointment and the rest of the day's shopping which I combined when possible when up and out to an appointment.

    One time, I was walking around briefly at the doc's office, asking questions while I waited to get my blood work done (diabetes). Then I needed to sit down or drop, so was back in my wheelchair when the phlebotomist called my name. Hubby started to push me back to the lab, as usual, and the phlebotomist said "You can walk back, leave the chair there. You were bopping around a minute ago."

    Grrrrrr. I told her "My bopping is done for the day." Hubby pushed me in my wheelchair right back to the lab. Thank God he understands I needed it. She then told me "I have a friend who has CFS and still works." I told her that CFS is a syndrome with different levels of severity, just like with Attention Deficit Disorder and Tourette Syndrome. It didn't help, her mind was made up, she was set on me walking then sitting in wheelchair, like I was faking it.

    I was merely pacing.

    I didn't think fast enough to also inform her of my orthostatic intolerance, not that she would have understood that, either. I could get up briefly then felt like fainting and had to sit back down in wheelchair.

    I guess I can't blame people for not believing I'm bedridden in between being up and out. All they see is me being up and about.

    They don't see the payback I get for being up - the post-exertional-malaise.

    Patti
    Last edited: Nov 6, 2017
    bct likes this.

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