Those Who Are Very Sick: What do you do with your day?

Discussion in 'Fibromyalgia Main Forum' started by Marta608, Jun 10, 2006.

  1. Marta608

    Marta608 Member

    Hi ~ I find now that FM has added itself to my repetoire I can do even less than I did before with CFS. But I feel so useless just reading or sitting at the computer when I'm not sleeping or preparing something to eat. I do laundry, things like that but I feel hollow.

    What do you do with your day(s)?

  2. mrsjethro

    mrsjethro New Member

    I read a lot of christian material. It always seems to keep me focused and in the right frame of mind. I was also a christian recovery lay-counselor before this and I still have a few friends that call for help or just to talk from time to time. I have a laptop that makes it easier for me to be on the message board. If I didn't, I wouldn't be on as much because I can't stand sitting at the computer for that long. This way, I can lay on my heating pad and still be here. I have a 2 year old "puppy" that keeps me company and somehow he seems to know whether I feel like a little light playing or if I'm hurting too bad and just need a little snuggle time. On days that I can actually get out of the house, I pour candles with my best friend. It started as a hobby that was fun and gave us an excuse to spend time together, but now they're starting to sell pretty good and I can work it around my health without worrying about being fired. I used to cross-stitch and enjoyed that a lot. Is there anything that you enjoy doing that is of a creative nature? It helps the mind to keep it occupied, or at least it does for me. I get to concentrating on what I'm doing instead of thinking about being sick. What about scrapbooking, or something that you could put in your lap even on the days that you may not feel like getting out of bed? Try to think of some type of craft or hobby that you think you might enjoy. I understand the feeling useless, though. I feel like my husband is having to shoulder the entire burden around here, but he does it well and doesn't complain much. I still do some of that stuff on the days that I am able. It is very important for me that I keep my mind occupied though, or I could easily slip off into feeling sorry for myself sometimes. If you can think of something that you think you might enjoy, I'll be glad to try and help you find some places to get the materials cheaper if you decide you want to do something like that. I spend a lot of time doing that too (researching), for the candle stuff and I run across a lot of other things for crafts while I'm looking anyway. Let me know if I can help in any way.
  3. Lolalee

    Lolalee New Member

    Marta, like you I have FMS and CFIDS. For me I don't think it's a matter of feeling useless anymore. I used to feel that way and I would push myself and then my symptoms would flare and I would feel worse...sick and worthless.

    Last year I finally came to terms with FMS and CFIDS. I am just not going to fight it anymore. I have accepted that I am sick and I have asked God to fill me with peace and He has. I don't mean that I have given up or that I am not hopeful for a cure or to feel better. I just don't push myself the way I used to. I rest as much as possible. I don't worry about the things I cannot do. This is a big step for me.

    I make sure that I have lots of books so that I can read if I feel up to it. My priorities have changed. Now, I am first, after God, of course. Every morning I step outside and take a big breath of air and give thanks that I can still see and hear and breathe. I go to church when I can. I call my sisters and girlfriends when I'm up to it. My husband get a home-cooked meal when I can cook.

    I've finally realized that things could be a whole lot worse and I am grateful for what I have. It took me quite a few years to get to this place. I know how you feel...I've been there, too.


  4. greatgran

    greatgran Member

    Know the feeling. By the time I do the food and laundry and what house chores I can do that is it..If it wasn't for the computer I would probably go nutter than I am..

    I feel if we accompolish just a few things that is big with our DD..

    Yes, I feel useless and there is so much more I would like to do but haven't found an interest in anything that I can do.. When I feel up to it I like to get out of the house but then again what to do.

    I tried getting all my snapshots and putting them in albums and getting all my home moveis labeled but that got boring so I havne't found a passion as yet...

    I am of no help but do understand how you feel.

    God BLess,
  5. kholmes

    kholmes New Member

    I'm about as limited as you, except I cannot do any laundry, cooking or housework. My wife, unfortunately, has to do all of those things for me. My walking distance is about thirty feet, and I limit my walking around our house. Can you get out? Drive? I can drive for about ten minutes, but I can't go into any stores on my own.

    My wife gets me out of the house, on short errands or rides. I GREATLY look forward to these little trips. Today, we drove up into the mountains for an hour. It was the longest ride I have been on in 14 months! Sometimes, she'll take me to the park to roll me in my wheelchair for a bit.

    My former life consisted of teaching high school full-time, coaching golf, and mountain biking or climbing on the weekends.

    Here's my day now:

    8-1:30 Morning prayer and Christian reading (i.e. Phillip Yancey right now), eating breakfast, more reading, talking to my wife, father, or a friend on the phone, and listening to the radio on the recliner in the living room. I take about a 20 minute nap at around 12:30 every afternoon.

    1:30-evening Lounging in my bed, on the computer, reading, watching a movie from Netflix, playing guitar if I feel up to it. I take a shower by sitting in an REI camp chair and using a hand-held nozzle.

    In the evening, we might take a short ride to see the sunset or stop by the library if I'm up for it.

    Being so immobile, it's very hard, on some days, to feel useful or productive.

    I try to remain very active mentally. The computer helps immensely, as does reading (join our new book club on this site, if you haven't already!), maintaining contact with friends and family, a lot of prayer. I'm also very blessed to have a number of former students stop by for short visits to talk about movies and books.

    Daily "rituals" help: spiritual reading in the morning; playing Daily Word Jumble online when I first get on the computer; trying to do one good thing for somebody each day.

    I used to be so hard-working and active; now I have to take a sort of accepting, Zen-like approach to life. I'm also learning to just lounge around and not feel guilty about it.

    [This Message was Edited on 06/10/2006]
  6. BlueSky555

    BlueSky555 New Member

    Hi marta,

    Wow, I have a difficult time dealing with, not only this DD, but all of the other health issues, which limit my activities.

    Quite different from what I did and unfortunately, no or not much interest in some of the things that I am able to do.

    After riding horses many years, water skiing, camping, playing music almost all of the time except working during that time, I just don't have much interest in what I can do except watch TV and I can do light laundry and prepare easy meals but it takes some time; got plenty of that.

    I must say that music was my life but just lost interest in everything at this point. This board has become a big part of my everyday life and has given me something to spend my time doing. If the posts are not spaced/paragraphed, some are difficult to read. However, I just re-read over and over until I get it. I have a difficult time concentrating.

    No grandchildren; live alone, so that's about it. Don't get my wrong, I'm content with my life.

    Good post marta; interesting to see what others spend their time doing.

    Thank you,

  7. Marta608

    Marta608 Member

    Thank you for helping me feel less alone with this...situation. I was, like most of you, very active at work, the community, with friends. I got things done, by golly! I also know now that I defined myself by what I did. Now that I can no longer do as I did (understatement), I must define myself by being. That's hard when you begin late in life but evidently not impossible when I read what you all write.

    I'm happy to know that, like me, most of you seem to have a great deal of faith regardless of your condition. Sometimes I think my name should be Pollyanna instead of Marta, but I believe there's a purpose in all of this. That's my story and I'm stickin' to it.

    All of you, mrsjethro, Eileen, greatgran, hangingin, Kholmes, bluesky, have such beautiful spirits that are expressed even on a technological forum as this.

    Thank you, mrsjethro, for encouraging me to find a new passion. I used to love to paint and draw but somehow that creative spark has dimmed. Maybe I need to sit myself down with paper and charcoal and just wait for inspiration to hit.

    Eileen, you're right about not pushing. I could do that some with CFS but now I pay immediately with pain if I try.

    greatgran, thank you too for your understanding. I enjoy your posts.

    hangingin, being a mother is a huge job even for the very healthy and energetic! I'm amazed by those who parent with these illness. A big pat on your back. Gently.

    kholmes, you, my man, have had a great deal of adapting to do, haven't you? What a wonderful resouce you must be for those young folks who find their way to you. God does work in mysterious ways, does He not?

    bluesky, you too have had to step waaaay back but it sounds as if you've done it with dignity.

    You all inspire me.

    Thank you.
    [This Message was Edited on 06/10/2006]
  8. Jordane

    Jordane New Member

    My life has changed a lot since this DD.As it has for all of us one way or another.

    Life has been busy lately,trying to get my hubbys mom moved into an apartment.Packing and moving stuff down.its an hour away,where she used to live.But its done.

    And it took so much out of me it will be months before I will feel past this.

    I used to paint (tole) and draw,now it no longer interests me.And it hurts my hands to hold onto things.If God sees fit I may get to it again.

    Now,I get up,do some housework,laundry,rest in between a lot.Read,it takes me away from this DD. for awhile.Usually to bed early because I am so wiped out!!

    Take Care!!
    hugzzz, Jordane
  9. kholmes

    kholmes New Member

  10. Marta608

    Marta608 Member

    Good morning ~

    Jordane, how in the world are you managing to pack and move your MIL? I did move last year but that was before FM, "just" CFS, and it was very hard. It sounds as if you're having the same lack of creative juices that I am. Don't you think we just run out of energy just doing the things that have to be done? Maybe we should let those go when we can and draw instead. Some day I'll try it, maybe.... Bless you for helping MIL.

    Kholmes dear, I have no dog in my profile; in fact, I have no dog at all! I wonder who snuck in there?? Those puppies have a way about them.....

    Honora: Oh! you got out! Only someone with these illnesses can appreciate the wonder and joy of that. Wine on the beach? My word, it sounds like old times, doesn't it. I wish for many more of them for you. You got out. I'm stretching my face with a smile for you.

    Let's bump this.

    [This Message was Edited on 06/11/2006]
  11. kholmes

    kholmes New Member

    Sorry; I must have been looking at BlueSky's profile and thought it was yours!

    Check out her pooch.

  12. lovethesun

    lovethesun New Member

    With acrylic paint.Tou het the wooden items from the craft store.It's great because you can drop it at any time and continue later.I make them for church or relatives.Linda
  13. meowee

    meowee New Member

    I am 50 years old. I have never felt really good since I was probably 18. That's when I started with the IBS and bad headaches. I would evny friends who said they bounded out of bed with so much energy. I would get out and drag. I was in my 30s then, but had a family to raise, so I had to do things even though I felt crummy.

    Now, I am 50 and feel the worst I have ever felt in my life. I still cannot adjust. Some days I feel "ok" to run the vaccuum, do some cleaning.

    Other days I can't get out of bed.

    I can go to a dr appt and that wears me out for the day.

    I can go grocery shopping and then I am down for 2 days. I find it very hard, very frustrating, and I am sad my life has gone this way.

    Other couples our age are traveling, doing yard work together, and I feel so bad I can't do any of that or even plan a day ahead.

    God bless us all.
  14. Marta608

    Marta608 Member

    You'll notice as it gets later, my titles get shorter....

    donnaeil, you are one busy woman! I got tired just reading what all you do. lol How do you spend time in the sun? I tried that yesterday and today and it wiped me right out.

    lovethesun: same question for you.

    Kholmes: cute dog! I wonder why kind it is? Where is bluesky when you need her? Probably outside.

    It surprised me when you mentioned a dog in my profile because (well, first of all, there is no dog in my profile) and also because I'm considering getting one like someone else on this board. Sorry, can't recall name.

    I have a very old cat who is wavering on The Edge. I know it will be very hard when he's gone but I've had it with cat hair. I'm going to try going pet-less for awhile to see if I can stand complete solitude but when Oliver's gone I'll be talking to myself. ;>)

    meowee: your post snuck in on me while I was typing. I'm sorry you have such a tough time. Your days sound much like mine although this almost-total exhaustion is a new thing for me. CFS didn't knock me down like this has.

    Yes, bless us all.

    [This Message was Edited on 06/11/2006]
  15. lovethesun

    lovethesun New Member

    thrift stores.(When I first got back to California 2 hours would send me in a flare)I can go out for about 3 hours if I don't do walking.Basically though, I get my sun when my husband does errands.I try to open my bedroom windows.Also though I have a sun allergy and have to wear coverups and sunscreen so I don't get a rash.Linda
  16. Bambi

    Bambi New Member

    NOT funny looking. It's a beautiful little Chihuahua isn't it? I think the pose is very interesting. Waiting for someone to come home? I know whoever said it was funny looking was not being mean, just got a kick out of the dog, but I didn't want to let that go. We all love our pets and I don't know about anyone else but I'd be sad if someone said one of them was funny looking. LOL!

    I had a Chihuahua once years ago, now have several, but that one had a hard time with food..she loved it. She'd get way too fat and I'd have to put her on diets. One day I took her to pick up my daughter from Kindergarten (wow, MANY years ago) and she was in one of her FAT modes.

    The teacher just got a glance at first and said "OH, you've brought a baby pig to class!". All the kids laughed. I knew she just made an innocent mistake but I did take it to heart. I think I put off too many human feelings on my pets, like "they" will have hurt feelings, when it's "me" that gets them.

    Anyway, poor Tootsie was put on another diet right away that time, but it never lasted. I didn't want to harm her health but she just LOVED food and it was hard to resist her
    pleading. Anyway..BEAUTIFUL dog!
    [This Message was Edited on 06/11/2006]
  17. Empower

    Empower New Member

    Love the dog pic!
  18. Marta608

    Marta608 Member

    Bump for the week people. lol
  19. fibrohugslife

    fibrohugslife New Member

    In all honesty it varies per day. Since Friday I have been bedridden in pain my neurontin stopped working it seems. So I am just waiting it out a day or so and then try again and take it and see how I feel.

    During the days I get up late in rhw morning because I went to bet late the night before, I have a hard time sleeping at night.

    I spend time stretching and doing light Yoga whiie I try to keep my mind positive and let myself know that I will indeed make it downstairs safely and that I won't fall.

    I'm a college student so I go online and check on class discussions, etc.

    Besided being a college student, I STILL have lot of time to do other things than that. So I spend time online in here, and some other choice sites I can to visit.

    I do my Word Search puzzles and if I feel can go for walk and try to do exerise.

    Watch my movis and rest. Fight these horrible DDs.

    Somtimes I feel like I don't do much, but I do what I can.

    Happy hugs!!

    [This Message was Edited on 06/11/2006]
  20. Marta608

    Marta608 Member

    fibrohugslife: yes, good answer, you do what you can. And you're a student? Amazing. I'm in total awe of you students, people with jobs outside the home and parents. I have no idea how you do it. You are the real heros of our time.

    donnaeil: Ah HA! Another case for vitamin D. I will have you know that I am sporting a slight red nose this morning. Not from drinking but from five minutes of sun which is all I can stand. Now, in the winter, sun can be harder to find here in MI.

    A hat has occurred to me..... Might get me to requisite 15 minutes. I'm trying to related the 15 minute thing: fame, sun, etc. but clever thoughts escape me.

    Hugs to everyone for a good week,

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