Discussion in 'Homebound/Bedbound' started by Mikie, Mar 7, 2017.

  1. Mikie

    Mikie Moderator

    Introduction Page

    Well-Known Member

    Welcome to the Homebound/Bedbound Board!
    Please introduce yourself and tell us a little bit about your health situation, and anything else you'd care to share . We hope you will stay and participate, or just drop by and read our posts!

    gb66, Yesterday at 3:58 PM Report
  2. Mikie

    Mikie Moderator


    This is the only way I have to post this with your name and avatar. I had to copy and paste it. I did set it as a sticky post so it should stay at the top.

    I think this is a great idea and thank you for always looking for ways to make our website better.

    Love, Mikie
    gb66 likes this.
  3. 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
    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


    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
    bct, rockgor, Mikie and 1 other person like this.
  4. rockgor

    rockgor Well-Known Member

    Hi Patti, A very cheerful bio. Your DH sounds like a gem. I joined the Pro Health
    Board the same year you did. Actually I had been buying supplements from PH
    before I knew they had a computer site.

    I was born when FDR was President during the Great Depression which was
    immediately followed by WWII. My Parents belonged to the Greatest Generation.
    I belonged to the Coolest Generation. The first to dance to Rock and Roll.

    I've had many jobs along the way starting with paper boy, snow shoveler, lawn
    mower, cave guide, dishwasher, fast food flunky, encyclopedia salesman,
    social worker, insurance adjuster, law clerk, attorney. In my mid 40s CFS
    struck, and I then worked as a part time law clerk for 20 years till I retired.

    I am now in my 70s, but I feel that one can be immature at any age. My
    partner Gordon and I have been together 36 years, so maybe it will work out
    after all. He still makes me laugh.

    I am grateful to Pro Health for providing this forum, and to all my friends here
    who offer support and camaraderie and helpful suggestions.

    Rock [​IMG]
    gb66, bct, Mikie and 1 other person like this.
  5. Mikie

    Mikie Moderator

    Hi, Kids,

    Patti and Rock, loved reading your posts. GB, again, this is a great idea.

    Christmas Eve, 1990, I came down with what felt like the worst flu ever. I saw the doc and he did tests. Turned out I had a mycoplasma bacterial infection. He gave me two courses of antibiotics (years later, I found out it takes six months on the ABX to drive this infection into latency). I eventually recovered but it left me crippled for months and I've never been the same. It triggered CFIDS/ME but I didn't know what that was back then. I lived next to a military facility where soldiers were being vaccinated prior to deployment to the first Gulf War in Jan., 1991. Later, I learned that this mycoplasma infection was found in 2/3 of soldiers who came home with Gulf War Illness. I think I got it from an actively infected soldier out in the holiday shopping crowds at the local mall.

    I had an auto accident in 1999 and FMS kicked in full blown in 2000 when I had to quit work and file for SSD. I was bedridden most of the time and on morphine for the pain. Over time with meds and PT, I improved enough to hold down a part-time job as a cashier at Publix. I enjoyed it and planned to keep on working til I was 70. Then, I got Sjogren's Syndrome which causes exhaustion that makes CFIDS/ME look like a cake walk. I had to stop working. Finally, I got arthritis in my wrists and hands. Soooo, to date there are four inflammatory immune/autoimmune illnesses which make their home in my body.

    I have two grown married daughters, two sons-in-law and one grandson who is 11. They are in CO and TX. Both daughters have FMS as did my Mom. Sounds as though my grandmother had it too but no one back then knew what it was.

    Before I was sick, I worked as an insurance agent and loved what I was doing. I feel so very blessed that I was able to do almost everything I had wanted to do before I got sick. I was divorced in 1989 and dated some really nice men but no one I felt I wanted to marry. I've been single 28 years this month and am too set in my ways to want to give up control of the remote. I live in a wonderful condo community in SW FL and have a lot of great friends here in the hood. I've had some set backs this last year so haven't been out doing much of anything.

    I'm sooooo thankful for ProHealth and this website and also for all the kind and generous people I have met here. I consider all y'all my Online Family. I don't know what I would have done if I hadn't found this special place and you special people.

    I am a child of God and am interested in other's religions. I am also a critter lover. All my life there have been cats and dogs. Right now, I live with a large B&W long-hair cat named Sylvester. I knighted him with a butter knife and call him, Sir Vester. He is adorable but can be quite ornery. I share stories of his antics over on the Porch. A dear friend here in the hood took in a very pregnant stray and she had seven kittens. My friend will take them to the shelter once they are weaned. It's a no-kill shelter. Sir Vester and his sister were dumped here when they were young kittens.

    I got interested in quantum physics a few years ago. I'm not that smart but there is an amazing number of books for dummies like me. There are also a lot of videos devoted to the subject. Normally, I don't see issues in terms of B&W but rather in shades of gray so QP is perfect for me. I do crossword puzzles and play solitaire online to relax. I grew up watching TV and still love it and reading. These things have gotten me through the rough times.

    Well, that's about it. Hope we get more people to post info.

    Love, Mikie
  6. gb66

    gb66 Well-Known Member

    After my four children were all in school and in their teen years I was planning on returning to college and then, hopefully, getting a job, but In 1978, at the age of 38, I was attacked by some type of viral or bacterial illness. None of the many doctors that I went to were able to give me a diagnosis and they thought it would eventually pass, (so did I).

    After the first year I started to improve so I decided to get a part-time job. This was going well but I still wanted to return to college. I was tired all the time and my body hurt a lot but I hoped it would pass.

    I started community college, part-time, in 1980. I was totally happy with my studies but I just had so much trouble with stamina, and the pain was increasing. Some days my blood pressure would drop and I'd end up in the infirmary. I had to leave my car at school a few times and call my older son to come and take me home.

    I kept going to school but there were times when I had to skip one of the quarters and just rest, especially in winter months. It took me 7 years of stopping and starting to complete my associate degree.

    I then started working at a school for mentally challenged children and young adults. I was the medical records supervisor. I loved it. But, of course, I just kept getting sicker and sicker. The fibromyalgia pain was increasing and I was now aware of chronic fatigue syndrome which it seemed I was suffering from.

    I was only able to work for a couple more years, even after cutting back to part-time. During this time I also worked as a medical transcriptionist and hoped that it would be less physically stressful but I still ended up having to leave work.

    I've been homebound, more or less ever since about 1990. My health gradually declined and since 2009 I've developed several more conditions.

    I have CFS, FM, MCS, OA, Diabetes Type2, Spine deformities, High BP, Cholesterol and low Thyroid, as well as Tremors, a Brain Cyst, Ocular Migraines, and Pelvic Prolapse. I am still able to walk but use a wheelchair when leaving home. I'm able to take care of my personal needs but my husband does all the shopping and household chores. I still cook sometimes.

    I keep myself occupied by using my computer, watching some tv, and a lot of reading on my Kindle. This board is my only social life and I'm so grateful for it and for all the friends I have here. I'm 76 years old, have 4 kids, 14 grandkids, 12 greatgrandkids, (including all the 'steps'.) I never get to see any of them anymore because I'm just not up to having company. We do talk on the phone though. I only leave home for medical appointments.

    Thanks to all of you for being here. Hugs, GB
    Last edited: Mar 17, 2017
  7. rockgor

    rockgor Well-Known Member

    Hi GB, hope you're OK. Haven't heard from you for a while. Boy, you really got hit
    by the chronic and rotten disease truck. Well, I guess we all did, but some of us more so,
    so to speak.

    There's a comic song from the Civil War called The Invalid Corps. That's
    where we would have ended up. It has a jaunty tune. You can find it on
    good old Youtube.

    I'm starting up a new game. I hope everydobby here will be able to play.

    Hugs, Kids
    gb66 likes this.
  8. gb66

    gb66 Well-Known Member

    Rock, It's always amazed me that the word invalid can mean 'not valid' as well as 'ill/disabled'. I haven't felt 'valid' in many ways in the last 40 years!

    No, we never expected to be this ill or for it to last forever when we first got sick. Life can certainly throw some curves.

    I've been feeling a little better lately and we're trying to get some things done around the house. We are so far behind in all repairs, etc. because of my allergies and sleeping hours.

    Thanks for keeping up with my whereabouts! I'd love to play a new game. I hope you post one soon. :)

    GB, of the 'Invalid Corps'
    bct and rockgor like this.
  9. Mikie

    Mikie Moderator

    At least, we have great Esprit de Corps! We may be down but we're not out--mainly because it's too difficult for us to go out. Oh, such dark humor. Some days, it's the only thing which keeps me going.

    These conditions are so strange that I wonder whether researchers will ever get to the bottom of things. OTOH, I keep reading about inroads being made so guess we'll see. I just hope funding to the NIH isn't cut in the next budget.

    If it weren't for everydobby here, I don't know how I would have made it this far. Thanks to all of y'all.

    Love, Mikie
    rockgor, bct and gb66 like this.
  10. hangininthere

    hangininthere Well-Known Member

    Hi Bodycontouring, nice to see you.


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