Tips for Managing Daily Life

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ProHealth, Jan 8, 2008.

  1. TABrown

    TABrown New Member

    That could've been me writing that. I am so with you. I've always looked healthy no matter what was wrong with me. No one ever believed I was ill--I keep having to remind own husband. But you know you're suffering, so set aside time for yourself and pamper yourself in some special way. Please know you're not alone.
  2. Pennygirl2

    Pennygirl2 New Member

    Hi, its Penny. I really thought this thread was very helpful even though most of us know most of it. I liked the one about resting your mind with NO tv, reading, anything at all. This is hard for me, but I have found that mental exercise can wear out my energy just like physical exercise does. I can only add when sitting-smile.
    Sit and smile. Uses the right muscles in face to promote good feelings.
  3. romalaw

    romalaw Member

    Early on in my illness, I got rid of my heavy pottery dishes and replaced them with corelle. Corelle dishes are very light weight and so much easier to lift in and out of the dishwasher. Also, they don't break if they drop. I know this sounds like a small change but it has made a big difference.
  4. HopeUDance

    HopeUDance New Member

    My story, my experience with FM begins as a heart-breaking tale, but it ends on a very positive note. Without reading my background (the beginning of my FM trials and tribulations)- I doubt one would truly appreciate how far I have come. I know that many of you may have similar stories as I have read so many and they moved me so much.
    I worked in the medical field for 27 years, in hospital business offices~ (supervisory),admitting department ~ (manager), a rehab facility ~ patient rep. My last job was managing 2 clinics at the same time, an extremely busy chiropractic clinic and an outpatient physical therapy clinic. I worked 10 years in that stint.
    Over the course of many years, I suffered several back injuries, due to falls, lifting and bending the wrong ways, and a couple of auto accidents.
    I can't really remember, and probably will never know, when my FM originated. Since there were so many incidents, I would almost recover and then boom! another incident.
    I always attributed my pain and many other health problems to my spinal injuries.
    I was almost always hurting, especially those last ten years of working. I would travel quite a bit to other clinics to hire, fire, train, etc. As soon as I got home, I was in my
    nightgown and in bed. My husband would cook something and bring it to me to eat in bed. This went on for a couple of years. I started seeing a psychiatrist for anxiety, major depression, and sleeping problems which I attributed to my stressful career. I also began seeing a counselor at the same time. I am still seeing them, since August of 2003!
    In Oct. 2005, I became so deeply depressed that I got my gun out and put it to my heart. I wanted out of this world of pain that I saw no end to. I am Christian and this really goes against my beliefs, and I love my family and would never intentionally cause them pain. But at that moment in time, I was not in touch with reality, I was just wanting to put an end to the suffering. I could not continue on in life, or at least that is what I was thinking, not rational at all, I know. I had made my mother aware of my suffering and she had made me promise to call her if/when I ever got desperate. I called her. She called my psychiatrist. She called my husband. My husband came home and took me to the E.R. and I was admitted into the psychiatric unit. I was given medication and put to bed. The next morning, I met with a psychiatrist. I was very tearful and was in so much physical pain that during that meeting ~ I was diagnosed with FMS and MPS by him. I also was diagnosed with PTSD, Major Depression, and an Anxiety Disorder. He told me that had it not been for the suicidal ideation, I would not even be in that ward. He told me the cause of all my depression and anxiety was largely due to physiological problems, and
    that I was not crazy! He told me it was not all in my head!
    I was there for 2 weeks. I came out knowing that I had to take care of my health, which had been screaming for attention for a long time! This meant that I had to quit work. I applied for Social Security Disability benefits a few months later and it went through on the first try.
    There is so much more to my story, but I would have to write a book, probably to get it all told. So for now, I will skip some things: I did attempt suicide again, Jan 2006, and that time I had taken all of my newly filled prescriptions, 5 bottles, I think. I was completely out of it, when EMS came.
    We lived an hour away from the hospital and the EMS people
    called for AirLife. I was told later on that when the helicopter arrived, I had no pulse. I don't know what they did, but they obviously got my pulse back. When I arrived at the hospital, I was intubated and put on a ventilator which was doing my breathing for me. Gradually I started breathing a little on my own, about 30%, with the machine doing 70%.
    I don't know how much time transpired, as I was not conscious during any of this, but eventually I came to. By then, I was breathing about 70% and the machine 30%. Since I had all these tubes up my nose and down my throat into my upper chest, I could not talk. My family members were there and someone gave me a clipboard with paper on it and a pencil. I scrawled a few brief words like "throat hurts", and "take this out" (the tubes), but they said not until you can breathe all on your own. I wrote "I will, just take out"
    and finally they did. I was there for a few days under constant "suicide watch". Then transferred back to the same psych unit I was in 3 months prior. You see, I had gone from
    learning I what I had in Oct 2005, quitting my job, and being bedridden for the most part to then having to try to learn how to live with this constant companion, and how to adapt and deal with all of the multitude of issues. I did not want to spend the rest of my life in pain, in bed, on medication, and be dependent on anyone for all of my needs.
    I did not want to be a burden to my husband or my family.
    Most of all, I did not want to wake up everyday in pain knowing that there was no cure in sight for what I had. So, just getting a name for what I had, only gave me a temporary sense of relief.
    Now~ I am happy to be alive. I have made peace with my body and its dis~eases. I am still in counseling. I am still on medications, although they have now been changed to help me more effectively. I am getting assistance from my state's Rehabilitation service to help me prepare for a new job. They are helping with my college tuition, and some of my medication expenses as well. I am attending school online and pursuing a Bachelor of Science degree in Interior Design. I just became eligible for Medicare, after waiting 2 years + 5 months, and have enrolled in an HMO, which will be much more beneficial in meeting my particular needs, than Medicare alone would be cost-wise. One benefit that the HMO offers that I plan to make use of is the free membership to a fitness club nearby. I am going to start with brief times
    on the treadmill, and the stationery bike. And end each session in the pool and then the hot tub.
    My husband does all of the housework and cooking and laundry. He knows that I will only be in more pain, if I overdo things, and I am one of those people that can't seem to stop once I get into something. I think once I get in a routine at the gym, I can probably work my way up to being stronger. Then, I will possibly be able to do some light housework. However, since I am attending school online, my
    husband and I have agreed that I should focus on my health and my school. I am doing well in school, but I was having difficulty with the fibro fog and reading and retaining what I needed to learn. The state Rehab office sent me for a complete evaluation and battery of tests and I have ADD, too! So I am now on Adderall, which I take before I "go to school". It is helping me greatly.
    Ultimately, my goal is to finish school, get my degree and go back to work.
    In the meantime, I will be:
    * working on improving my physical health and getting stronger
    * staying on a regular schedule
    * continuing my counseling sessions
    * nurturing my husband and our marriage
    * reaching out to my family and being there for them
    * taking my medications as directed
    * staying current on the latest news about FMS/MPS
    * trying to get as much restorative sleep as possible
    * eating healthier and watching my weight
    * taking time to relax and practicing guided imagery
    * studying and working hard to earn my degree
    * making new friends and nurturing my friendships
    * Waking up everyday and thanking God that I am alive and that my life is precious and meaningful and I know He will give me the strength I need, one day at a time!
  5. HopeUDance

    HopeUDance New Member

    You have taken the first step by reaching out here! You are in good company. We all are experiencing so much on so many levels. We all have gone through various stages. If you can no longer work, you need to know that "that's okay". It really is time, perhaps, for you to sit down with your husband and let him know what is going on with you and your health. When I had to quit, I thought the world would end. That was almost 3 years ago, and the world is still spinning. I am attending school online and working toward improving my health and stamina and starting a new career in a few years down the road. I am being good to myself, instead of trying to take care of everyone and everything else around me.
    Surely, your husband must see that you are hurting. How can you have hidden that from him, or anyone else, for that matter? You may also think about calling a family meeting, if you have kids, (I don't know your age or if you have children, their ages) but your close family members should be invited to attend. I want to recommend a book, that you can probably get at the library or online at Amazon.com or another place online you may know about. It was written by
    a woman, Devin J. Starlanyl, M.D.~ and is entitled: "THE FIBROMYALGIA ADVOCATE: Getting the Support You Need to Cope with Fibromyalgia and Myofascial Pain Syndrome".
    The ISBN is 1-57224-121-7 so you can order it through your local library or interlibrary loan system.
    This is, by far, the most comprehensive book that I have read since my quest for information began in Nov 2005! And I have read many! What I really love about this book is that she has actually written some wonderful guidelines on how to tell your husband, your children, and your other family members, what you are having to deal with and how your daily life is being affected. You will find that in Chapter 14.
    This book will give you so much helpful information. It covers everything you should know and I refer to it often.
    I hope you will check it out or buy it. Once I read the library's copy, I knew I needed to keep it on hand, so I bought one online. Good Luck and God bless! And remember you are not alone and you need not suffer in silence. Help is available, but you must ask for it and seek it out. Make this your mission in life. Because it truly is just that!
    [This Message was Edited on 04/02/2008]
    P.S.I don't like that icon, but can't delete it! I hit the wrong button apparently! Sorry!!!
    [This Message was Edited on 04/02/2008]
  6. Bosley

    Bosley New Member

    Yes Yes Yes, I love my husband very much and we have a good time, if you know what I mean. We have not slept in the same bed or room for years. It apalls people when they find out, especially my mother. But, I need my sleep and he snores and gets up earlier than I do.
    On a recent trip we had two beds in one room-
    No one says a married couple need to be in the same room-plus I have a great French themed room he would hate to sleep in---------Good Luck
  7. nina_and_me

    nina_and_me New Member

    I stopped working in late June of last year. I didn't want to stop, but I was having trouble getting my work done, and my boss was less understanding with each absence. I was on intermittent FMLA, but my boss said he needed someone who was reliable. The stress was getting to me in a big way.

    The fatigue was overwhelming - I slept from Friday night until late Saturday - about 24 hours straight. The last straw was that I starting to get drowsy while driving and I had a few close calls.

    About a month after I stopped working, the pain stopped completely, and it lasted for about five months. The fatigue never went away, but since I didn't have to work or worry about getting up to go to work, I slept as much as my body needed to. I came down with bronchitis around the holidays, and the pain reappeared, but it's not as bad as it used to be.

    A lady from the church comes in for a couple of hours every two weeks to do major cleaning, and I keep things as uncluttered as I can. The lady who helps me clean doesn't charge much, and her help is invaluable.

    Because I'm not working and I'm on disability, my income has gone down substantially. I'm in the process of selling my home, and when that's done, the equity should be enough to purchase some land and a mobile home.

    I won't have a house note, and my disability income will be used to pay utilities, food, etc. and hopefully, I can start saving again. I'll miss my house, but if it comes down to my health or my house, I choose my health.

    nina
  8. Amybtru

    Amybtru New Member

    I sing when things are too much....I am a Dave Matthews Band lover and I just sit and sing at my desk or with my mp3 player on..
    If you can download or buy some cd's from songs when you were younger for some of you older ones like the 50's and 60's or 70's and 80's and so fourth and play or sing music that reminds you of when you were younger and livlier can sometimes lift you up..if you can't live like you lived back then maybe you could still feel it in your heart..Like I was younger in the 80's and I love 80's music so so so much..But yeap I sing my heart out and it helps me cope with sadness and pain of my body..
  9. cleo0526

    cleo0526 New Member

    I love the thought of your birdie taking a bath with you. My cat LOVES water and sometimes when I'm soaking in the tub she'll lay on my chest (w/ a towel, sharp claws) and just cuddle her head under my chin and purr. I still hurt and she's heavy, but it's soooo peaceful!
  10. AK_Rose

    AK_Rose New Member

    Wondering about acceptance of condition? I have a hard time believing I would have FM, esp after the other med conditions I have had. Am down to 2 days work/wk, terrible financial trouble, and my dear husband "wishes" I could work more (I'm a nurse - painful to lose my income). We keep waiting for me to get better - some days I am and some days I am not. Seem to run like crazy on "good" days, b/c sometimes there is so much to do, and I just want to see someplace besides work, home, and church. I want to feel "normal" again. I know I'm normal - but normal as in going where I want, when I want...

    Before this, I injured my hip and have been on pain meds for almost 3 yrs b/c it has never healed, and now these symptoms started 2 yrs ago, and rec'd diagnosis of FM from rheumatologist 1 yr ago. Still grappling although as a nurse I've researched and also have read a lot from others w/FM and it could be me writing... Guess I don't know if accepting it is "giving in" and "fighting" would be better, and how do you get people to understand that even if you look okay (dark circles gone since I started B12), it's not necessarily something that will "go away"? I know there's another thread for SSI/SSD, but if any of you are on it, and still work, how do you decide when/if you should apply - how do you decide on an emotional level - not a determination level (do I meet criteria?)? What does it feel like if you apply and are approved? Good b/c you have better financial situation, or bad b/c you've been approved as not able to work?
    So many questions... I know... Am just coming through a very hard time and am getting some help from a new HCP, but I struggle w/decisions like - should I take a sub nurse position that's open for tomorrow b/c I know it will pay a bill? Or do I say no b/c I have a day scheduled already for Friday, and it is an extra day? Cannot ever seem to pay all bills b/c my income is probably 1/4 of what it was before all of this, and we struggle just to keep our house...

    Don't want to be a downer; forgive me if I am. I see so much wisdom and acceptance as I read through here that I just have all of these questions come to my mind, and today is a "good" day, yet the decisions to be made are SO hard... I am married, as mentioned, and have a 6 year old daughter who is MAMA'S GIRL... I want SO MUCH to be the athletic outdoor person I was before she was born b/c all she sees of me is the person who is in pain and is tired...

    Thought I had broken my collarbone a couple days ago b/c my shoulder started hurting, but then my daughter got sick. Stayed home w/her b/c I can't take us both to the doc, and although my collarbone is still swollen, I no longer am having the same pain or signs of a broken bone. So confusing?? Do you wait on symptoms like these or is this part of it? I don't remember something like this being a symptom of FMS or CFIDS...

    My apologies again if this is too off-base of this thread... I hope it hits the target enough that it doesn't seem totally obtuse and again, I don't mean to be a downer! So if you feel down after reading this, SMILE REALLY REALLY BIG FOR 10 SECONDS, AT LEAST!!!!!! If that doesn't work, take your forefingers and make yourself smile by pulling your mouth into the shape of a smile, THEN you'll be laughing!! :)

    Thanks and love and strength to you all!
    Brenda
  11. HopeUDance

    HopeUDance New Member

    Hi Brenda,
    If you go back up a few posts, you will read my rather long story. Here is my take on your situation and I will try to answer as many of your questions as I can remember;)

    I am not positive but I think my FMS/MPS began in late 1992.
    I worked until Nov. 2005. It damn near killed me, and that is not a joke! Looking back, I have come to realize that I should have applied for disability much earlier on. Had I done so, I might possibly have saved myself from doing more harm to my health.

    I did not have the luxury of quitting since I was a single parent, and then later got remarried, to an alcoholic. I was the main breadwinner and his drinking worried me more than my own pain. My good hard-earned credit went down the drain in less than a year after getting married. But I digress...
    Nothing is more important than your health and well-being.
    You must know, as a nurse, that you can't really properly take care of anyone else, if you, yourself, are in pain.
    You also can't be as much of a mother, wife, etc., if you do
    not take care of YOU first!
    This leads me to your question about acceptance. We all will arrive at that point in our own way and in our own time. Even when I knew my life was changed, and that I was always going to have these problems and had to adapt to them somehow, I admit I fought the very idea of it!! What did I gain from hitting my head constantly into a brick wall, trying to tell myself that I don't have this, I am going to pretend it does not exist, it is not real?? NOTHING! I was almost in complete denial, because I was determined I was not going to let Fibromyalgia or anything else have my life!

    Not very realistic, right? The sooner you can get some counseling about the changes that are going on right now in your life and all of your many, many worries, the sooner you will reach a place of acceptance. Accepting what you have does not mean giving up, nor giving in. It means you can start to deal with it and find ways to cope with all that comes with it. You can then decide about whether you should continue to try to work part-time, or wait until your body screams it out to you in severe pain!! To prepare yourself for making some of these adjustments and decisions, I would
    recommend: First, one-on-one counseling for some time in order to get a grasp on your entirely new outlook on life.
    A counselor can help you with so much needed support. I have actually been in counseling with the the same woman since 2003 and still continue to see her.

    Obviously, you will need to become your own advocate and build your own support system and healthcare team.
    Consult with a physician that understands what you are up against. Keep searching until you find the right one for you.
    You may be in need of physical and/or occupational therapy.
    I have problems where I feel my collarbone is broken, but its not- its just really swollen and painful. My neck, my right shoulder, and my whole spine are painful most of the time. Also my hips hurt.
    I tend to fall a lot. My husband, now sober, is doing all of the cooking and cleaning, laundry, shopping, errands, etc.
    He even helps me in and out of the tub when he makes bubble baths for me. And since I can't brush my own hair, he does that, too!
    I think that once you have enough medical documentation, you should gather it all together, and make an appointment for an attorney that specializes in disability claims. I did just that and my claim went through on the first try. I now am entitled to Medicare and switched it over to AARP Medicare Complete, which is an HMO plan. It covers all of my needs at a much less out of pocket for my needs.
    The biggest hurdle I have to say that I faced in all of this is the acceptance part. It is hard to admit to oneself that maybe now not all of my dreams are going to come true.
    But this I can say: maybe some of them can and will, if I take good care of myself and focus on the most important things in my life, my family, my loved ones, my friends, my pet(s), maybe a hobby that is not too taxing physically.
    I went back to school. I am going for my B.S. of Interior Design. I want to learn it all. I plan on going to the gym and walking the treadmill, or riding the stationary bike, on my stronger days, or just getting in the heated pool or jacuzzi on my not so good days. Just a few minutes a day,of light stretching can help. Make a list of 50 things, that you would like to spend time doing. You might not be able to play outside with your daughter, but you can color with her, or play with dolls, play with make up, do little puzzles together. Focus on all of the many little things you can do, instead of the things you can't do. Even some things you think you can't do, you may find, on a good day, you can do it, but for only a short period of time. The point is this is how you learn to live with it and keep your life focussed more on what you what to spend your good time doing.
    I hope this has given you a place to start.
    And just remember: It ain't over 'til the fat lady sings!
    (And that only happens in the movies!) Ha! Did I get a smile out of you??? Did I? ;) Take care and warm hugs...HopeUDance
  12. HopeUDance

    HopeUDance New Member

    How cute that your cat gets in the tub with you! I wonder if my little chihuahua will do that? He can't stand it when I am in the tub. So my husband has to put the lid down on the toilet and let him set in his lap so he can still see his mommy! Isn't that funny?! Thanks for sharing that little story, how precious! P.S. My hubby often calls me "Cleo" because I can be a little persnickety or "bossy". (like Cleopatra..)!
  13. HappyHattie

    HappyHattie New Member

    It helped me to read about your problems while still working - thanks! I work full-time and am just getting ready to start a new job and hoping that I can pull it off. Only have to work two more years and then I can retire but it is a challenge. I have been struggling with not feeling well for about the last year and a half - can't get diagnosed but no question in my mind what is wrong with me. Between the tips I have learned here and a good supplement regime from a naturopathic doc who is also an accupuncturist ... I manage to maintain. It is just nice to know there are others out there struggling ...
  14. eggy48182

    eggy48182 New Member

    Buy a Roomba...they're fantastic. Just let them go and they sweep for you. One of the best inventions made other than the washer/dryer and dishwasher to do household chores. I found one pretty inexpensive at BigLots.
    [This Message was Edited on 04/19/2008]
  15. tamsen

    tamsen New Member



    my husband snores really loud. I found some really good
    earplugs that don't hurt my ears. They are called pretty
    in pink. They are bright pink and foamy. Very comfortable
    I got them at Walmart. I even sleep through the dog's whining so my husband has to get up and let them out.
  16. rosefromvenus

    rosefromvenus New Member

    I am reading all the things that help people
    and they all make me confused. I am sensitive to
    vitamins, herbs and minerals so i can't take them. They make my sleep 100 percent worse. My life is like a train wreck when i try new products because my sleep is even worse as i try to get on new things and usually i just have to give up because i feel so horrible and nothing seems to make it better. If i take something (drugs like xanax)for sleep it only works for 3 to 4 hours then i feel horrible afterward partly because it's not enough sleep and i can't take it two times in one night. Also i am so tired and a pool would be so cold for me, because i am cold all the
    time, or hot but not if it is cold out or if i am in a pool. The thought of getting into a pool is painful even a 'warm' one because 'warm' for others is cold for me. I don't know how you can get the energy to do all the things that you say help. I can barely focus on all the information here.
    Also i am much more sensitive to pain than others, especially when i get the flu or a cold or the worst is a sinus infection. I completely unable to function when i get these illnesses. Another things that happens is that when i take drugs that are supposed to help i get the shocks in my body. I am afraid to take anything at all. Does anyone have problems similar to these? Thank you.
  17. tammylp

    tammylp New Member

    I have been dealing with this terrible pain for at least 10 years and was finally diagnosed with fm. It is so hard because people really don't understand, that simple things are near to impossible for me to do. I have migranes everyday and hurt so bad from head to toe. Trying to cope with kids and husband, housework, it is overwhelming and I stay irritable. I am glad to see so many of your notes. This is real and not just in my head.

    Thanks so much
    Tammy
  18. tammylp

    tammylp New Member

    I totally understand. I just posted, but i could just go on and on. Bright lights are awful, i have changed the light bulbs in the house to small amber lights. Loud noises, Most days it takes everything I have to get out of bed. There have been times my husband has had to help me turn over in the night, because i hurt so bad and can't turn by myself. I have got to where it wear slip on shoes because i can't bend to put on "real" shoes. I also have a scooter, due to not being able to walk far at all.
  19. Kathleen12

    Kathleen12 New Member

    This thread is way too long for me to read, so forgive me if this has already been suggested.

    Since I can never remember even 1/4 of the info and directions my dr has given me at the time of the visit, I bought a digital voice recorder to take with me on my visits. This is going to be a HUGE help for me, I know.

    Also, since doing a whole load of laundry is like doing a marathon, I take a change of clothes which has only been worn once or twice into the shower with me. I will mist them down with the shower head and then after my shower, I toss them into the dryer with a dryer sheet. Of course this only works if the clothes are not soiled. The jeans are freshened up and look like fresh washed.
  20. deserella

    deserella Member

    I ask someone in my family for help when I need it. Why should I clean my bathtub and pay back for it the next day when someone else can do it in 5 mintues?

    If I go somewhere I have the person driving drop me off at the front so I don't wast energy walking.