How do you escape your illness?

Discussion in 'Fibromyalgia Main Forum' started by pw7575, Feb 16, 2007.

  1. pw7575

    pw7575 New Member

    5 months ago my boyfriend and I moved into our own place together. We used to live with some of his family so there were always people around and I was always kept busy doing stuff for others (even when I should have been resting).

    I couldn't wait to move and thought I would LOVE all the free time to myself. Well here I am 5 months after moving and I am not enjoying this free time.

    I am finding that every single day is EXACTLY the same. I feel like crap and I sit on the couch all day surfing the internet on my laptop. I might do a tiny bit of work IF my boss sends me anything to do. All I do is sit in the same spot surfing the internet and/or watching TV pretty much from the time I get up until the time I go to sleep again.

    It is depressing. I feel like a piece of furniture or something.

    Before we moved there were always people around and they were always either keeping me company or were asking me to do stuff for/with them (even though they all knew I was really sick).

    I didn't realize how well distracted they kept me from my illness. Now I sit here all day and am SOOO aware of how crappy I feel. I have nothing to distract me from my illness anymore so I sit here all day either thinking of how to get better or thinking about how crappy I feel.

    I know that isn't good. I shouldn't be consumed by my illness. I now even dream about it....about what vitamins to take or new treatments etc.

    So my question to you all is when you are stuck in the house cause you are too sick to have a life how do you keep distracted from your illness?

    How do you NOT think about it all the time? How do you keep from feeling like you are useless and that your life has no purpose. How do you keep from feeling like you are a part of the home decor rahter than a person?

    Do I force myself to get out of the house more no matter how I feel? Do I take an online class in something?

    I thought about taking a class outside the home. Maybe a class in yoga, meditation, painting or drawing. But then I am worried about signing up for the class and being too sick and/or tired to actually attend. I don't want to waste my money.

    What do I do??? What do you do???

    Thanks,
    Pam
    [This Message was Edited on 02/16/2007]
  2. bewell4

    bewell4 New Member

    i love this question. i often rage against being stuck a single mother of a very* active young child. on the other hand, i think it is (not physically, because i think overworking myself actually contributes to and worsens my illness) but mentally, actually a relief to be so occupied with having to meet every tiny need of another person. ...gaa! (hear my frustration?! lol). my car is broken, and the unrelenting time alone is seriously my greatest enemy (well, at least when i think about that...probably if i am thinking about that pain, i would call that the worst challenge. if i am thinking about the loss of home, boyfriend, job; then that would be it. ah, poor me! lol). honestly, i find that i have only seconds where i am not feeling my pain or thinking about how i hurt or how to fix it. there might be a moment when the sun catches my eye and i am transfixed by its beauty. or my son does something very precious and i feel a short-lived bubble of joy. i would say that i am motivated and focused on improving/learning..but honestly, at the same time, i wonder if i am more negative than i know, and if this tendency (if it is such) to dwell on negative is part of the cause of the illness? and at the same time, i am at a total loss as how to thrive with so much isolation, i don't think it is human nature! we people need* company and love and touch and purpose. whew! ive exhausted myself thinking about this :) looking forward to other's point of view! thx for bringing up this topic.
  3. tngirl

    tngirl New Member

    What do I do to escape?

    Some days I manage better than others.

    One of reasons I'm still working is because the distraction keeps me from being obsessed. This disease can really consume a person.

    After work, I'm pretty much exhausted and usually hurting worse. I lie down on my back on the heating pad, close my eyes and try to relax.

    I'm trying to learn some relaxation techniques.

    I read a lot. Usually I read a book a day or maybe every two days and I still work full time.

    Go and look at the stars, they are beautiful. I get so caught up in what I'm doing that I forget to stop and appreciate the sheer beauty and grandeur of nature.


    I think your idea of taking a class is a wonderful idea.
    I think you should try it.


    [This Message was Edited on 02/16/2007]
  4. pw7575

    pw7575 New Member

    I really would like to hear what others have to say about this. Thank you bewell4 and tngirl for your responses.

    I may try a class and see how it goes. Maybe try to find a free one first so I am not wasting over $100 on a class if I am too sick to attend.

    Bewell4 I know EXACTLY what you are saying!!! When we lived with my boyfriends family I was basically raising a troubled teenage girl as my own. (Alcoholic and unavailable dad) He basically dumped her on me. So for years I put my illness aside and took care of her. Everything from doctors appointments to grocery shopping and everything in between.

    So yes when you have another person to take care of it is very bad for us physically (I was constantly overdoing it). It definitely didn't help my CFS and maybe even made me worse. So like you said it is bad for us physically but mentally it helps keep our minds off of the illness.

    That situation is definitely a double edge sword. Before I couldn't wait to get away from all of that busy physical and mental stress. But I guess you have to be careful what you wish for right! Cause now I have exactly what I wanted (our own place and lots of free time) but it isn't at all what I thought it would be.

    Taking care of other people gives your life a purpose. Now I am left sitting alone all the time with nothing to distract me...and certainly no purpose.

    Thanks for the responses. Would LOVE to hear how others are handling this.

    Pam
  5. mujuer

    mujuer New Member

    but like with everything, give yourself time to adjust. We all have to try to make sense out of our lives whether healthy or ill. I am a bookworm and that helps me alot as I sit with my heating pad. I also sew when I can and get out on days that I can. I am quite isolated anymore. I have tried getting involved with different things but always end up dropping out because of my fibro pain or exhaustion so I don't sign up for anything anymore. I love this website and the people here are in the same boat so I don't feel so alone. I think about my illness alot and some days I just have to have a pity party and then I usually feel better. I feel terrible this winter and have been mostly homebound and am looking forward to sunnier, warmer days. I feel like you in that most days feel exactly the same. Hang in there and try different things.
    Pamela
  6. TeaBisqit

    TeaBisqit Member

    If you can be on a pc, there are things you can do that can take your mind off the illness. I spent alot of years writing. Then I moved on to doing tv and movie spoilers for a few forums. After that, I got into the Sims games. I've made hundreds of game files and written a few tutorials. All of this has been for no pay. But it has kept me occupied. If you don't feel creative, you can always play pc games. There are lots of online worlds to explore. Some of them are only a few dollars a month for unlimited access.

    I've dealt with this disease for half a lifetime. And I've long since learned not to dwell on it. There is no point. I hurt every day. The only time I do dwell on it is when I'm flaring. Those days are bad. But for the rest of the time, I try to stay busy on the pc.

    I'd also suggest taking up small hobbies you can do in a chair or from a bed or couch like sewing plastic canvas or needlepoint. Stamping, small stuff like that. Just stay as busy as you feel you can.
  7. achingbytch

    achingbytch New Member

    Pam
    I dont mean to sound like a cliche, but take a few minutes and sit with yourself and think about what gifts you have. Can you cook? bake? sing? draw? paint? make music with an instrument? write? love animals? children? older people?
    What subjects interest you? art? music? history? philsophy? science? something less heady...maybe fashion or home decor? You know you have interests, you know because you are human and with someone who finds you have value in his life as well.
    Pick 2 things, one mental activity and one physical creative activity, if you do not have a place to start, either look online Amazon.com has very affordable used books, and start by reading. EVen if you read memoirs of other people's lives as a launching pad..its start.
    People love to tell people in physic pain to go volunteer to forget their pain and to learn how others are worse off. That's the best thing but its not always achieveable when you're overwhelmed with a depression that keeps you frozen inside and sitting very still...I know, I've been there. But if you can move for yourself and by yourself, its a start.
    A warm shower, some scent, something to drink and a good meal is also a good start.
    There is a chinese proverb...the cure for grief, is motion.
  8. pw7575

    pw7575 New Member

    These are all good suggestions. It is nice to know that I am not the only one who feels like a piece of furniture. I guess I need to find a hobby and try to adjust to all this new free time.

    I have things that I enjoy doing but I just haven't felt like doing them so I guess I need to just jump into something and get out of this funk.

    I think maybe I need to regulate myself better. Right now as soon as I get up I am on the computer checking my e-mail and then it is off to this site and the internet and before I know it it is 5pm and my boyfriend is home from work and I haven't showered or accomplished anything. And that is how it is for the rest of the night.

    So I think maybe I need to NOT jump right on the computer when I wake up. Maybe I should make myself eat breakfast and shower first and then try to spend some time on a hobby of some sort. THEN spend some time on the computer.

    I don't know exactly yet but these are all good suggestions and hopefully one of them will work for me. I hate feeling useless.

    Thanks for all the suggestions and for letting me know I am not alone.

    Pam
  9. jole

    jole Member

    I know it's hard some days to do, but get a hobby and set a time each day to work on it - I am just starting scrapbooking, and love it. It totally takes my mind off myself to have the pictures in front of me of loved ones, and to watch them evolve on pages that are decorated and nice to look at.

    the time flies by and I am actually accomplishing something that my kids/grandkids will be greatful for in the future.
  10. BobinGermany

    BobinGermany New Member

    I think that is what I miss most. My wife works alot so I am like alot of you and just play on the computer but I really miss conversing with people. If anyone would be interested in setting up a daily chat time in the chat room let me know. Just post a topic with my name in it and I will get right back to you!

    Have a super day!
    Bob
  11. Lichu3

    Lichu3 New Member

    Hi, Pam,

    Things I do during the day to distract myself:

    a. Like Prickles, I try to think who I can write to to push research funding for CFS. The U.S. CFIDS association has a grassroots campaign section on their website helping people to write to their political representatives. This might make you dwell on the disease more so maybe not a good suggestion for you but for me, it makes me feel like at least I'm trying my hardest to get some solutions for our medical problems. My goal is to try to write a letter a week.

    b. Try virtual volunteering....online volunteering without leaving home. www.volunteermatch.com (put virtual in distance)

    c. I take an art class once a week and draw sometimes during the week as well. It puts me in a relaxing mindset.

    d. Some places host daily weekday meditation classes with donation only and are drop-in. Haven't tried it yet but there are plenty here in California.
  12. momof471

    momof471 New Member

    Its important ot have something to do or look forward to doing or somethng that makes yourself feel useful. We still have something to offer inspite of our illness. Back at the beginning of January I joined the Y, at the insistance of my rheumy and cardiologist. They want me to use the pool. I did good for a couple of weeks, then the really cold weather hit and I've had a change in medication and I haven't been. However, its there when I'm ready to go, in the meantime my family can take advantage of the membership. The Y also has Yoga and Tai Chi and many other classes and you don't have to sign up, you get the schedule and you go when you feel you can. Just a thought if you have one near you. I also don't know how you would feel about maybe some light volunteer work at an elementary school or something of that nature, start small, say hey I can do 1 hour one day a month, schedule it and plan on it. Schools always need volunteers. This gives you something to look forward to. Next year my youngest starts school and I wonder what I will be doing during that part of the day. I could easily sleep it away. Should I probably not. just a few things to think about.

    God Bless
  13. Jack3

    Jack3 New Member

    I sure hear your position. The only good thing to do is force yourself to go out and be about people no matter how cruddy, tired, achy, etc., you feel. The depression only gets worse if you don't.

    Exercise to the limit of your ability every single day, no matter how bad it hurts or sick you feel. You will feel less lousey.....

    I have learned all this before I was diagnosed, been doing it for 20 years, kinda second nature now.
  14. grace54

    grace54 New Member

    So many changes with fibro/fatigue, everything about it goes contrary to a healthy existence. For those who live alone it is a real challenge to find meaning and purpose as you watch the world go by.

    I am lucky I have so many interests such as reading, self improvement, helping others, researching. The main thing that helps my depression and pain is music. My friends say when I am playing and singing I am in my own little world and seem so content. When my pain was at it's worst I couldn't sit still, constantly shifting positions to get comfortable, it was annoying for all concerned but when I would play music I would calm down.

    I know when I am with others I am distracted from the effects of fibro but I have to force myself to socialise as I wish to isolate. So keeping as active as I can helps as I believe we need to move to be healthy but not overdo it. Finding our personal likes and talents and using them to help others gets us out of ourselves and can help us keep positive.
  15. roge

    roge Member

    I hear ya

    Need to find a balance between over obsessing about our disease and not enough things to take our minds off of it..

    Been off work 2 years now and still busy researching what happened to me (ie. viral, mercury, ect) and how mi might get my life back and thus spending too much time on computer and not enough doing something else that doesn't involve this disease. It is so easy to get up and go right to the computer and like you say the time just flies. So like some of already said, gotta try and self regulate ourselves and make a schedule and stick to it.

    I think it is healhty to be "aware" that while we all despertaely want to get better, I still believe you need balance and that means like I said above, still making time for other things that are non disease related.

    And when well enough, get out of the house if possible and see people and if not well enough, then do an enjoyable hobby and if not sure what you enjoy, then just try something, anything, you wont know til you try. Just take action! yes i know none of us wants to waste $$ as you mention you don't want to take a course and not be able to go, but even if you go 50% of the time, it will still be $$ well spent in my opinion.

    I think I might start to paint (a great way to release feelings). And I know I want to help others and or animals so I hope to volunteer soon (hopefully a place where I can just show up when I feel I can)

    Pam, you are not useless , we are all useful and have meaning, even if sick, we all just have to look deep within and find those gifts we all have and then use them. We may or most likley are not able to use those gifts like we did before our illness, but we can use a part of it or adapt it, but we can still be useful.

    peace
  16. JLH

    JLH New Member

    How do you escape it? You don't. You just have to go on living your life like you need to and just tolerate it.

    I've had fibro, cfs, arthritis, and systemic lupus for decades. I worked for 30 years full-time and raised my 3 children and husband while working. I took my aspirin daily until they came out with ibuprofen, then started with it. I used ice packs and heating pads at night to help with the pain, and extremely hot showers in the morning to get going. It was not fun.

    I retired the minute that I was eligible for early retirement. Every year since I have retired, I have become worse. Of course, I developed more and more health problems the older that I got--like heart problems, diabetes, back issues, etc.

    Now, I'm almost housebound. I leave the house maybe 2-3 times a month, and someone has to come and get me, and drive wherever we go.

    Sometime life just sucks and you deal with the cards you have been dealt. As you can see, I'm depressed today -- due to my high pain level.

    Hugs,
    Janet
  17. pw7575

    pw7575 New Member

    You all have no idea how much I appreciate all of you. I am so glad that I have this site to come to. You all truely get what I am going through and know how to help.

    These are all REALLY good ideas. I think I needed people to remind me of how important it is to do something that you like and to interact with people. Some of these I hadn't even thought of.

    I am glad that I have so many things to look into and start doing.

    You know it is funny because georgiac asked what I like to do and I actually had to think about it. That must sound crazy. At first I could only think of one thing (art since I have been into that my whole life). But other than art as an automatic response I actually had to think about what I like.

    It has been so long since I really thought about what I like and who I am. I think everyone needs to do that now and then. Those things change from time to time and it is good to ask yourself that question every so often.

    Especially now that I am ill. I think I need to explore new things and see who I am now and what things I would enjoy now.

    Things I have always liked are art/drawing, reading new recipes (and hoping to have the energy to cook them), and helping people. I think I need to investigate myself some more to find out what I would enjoy now.

    This has been a really enlightening and helpful post for me. I really thank you all so much. I definitely need to reevaluate things and have a better balance between trying to get better AND having life outside of CFS.

    You all are great...I am actually a bit excited about finding something new to do. Hopefully I find something I really enjoy.

    I hope others got some ideas from this post too.

    Janet I guess there will always be times when it is so bad that we can't escape it which is why I think it is so important to try to do so when we can. I hope you are feeling better soon. I am sorry the pain is so bad today :( Hugs

    Thanks Again Everyone!
    Pam
  18. mrpain

    mrpain New Member

    You have really hit on something that I wish I had an answer to. People kept telling me that I needed to exercise some, which I knew was a good suggestion for many reasons.

    It's good for you physically, mentally, & spiritually; and it gives me something to do. Of course when your totally fatigued all the time and in pain, it's easier said than done.

    But I thought I would give it a try. I decided to take up golf. Since I was good in sports as a youngster, I figured this would be up my ally. So I started playing just 9 holes of golf, (using a golfcart of course). It would give me some exercise while trying to accomplish something.

    Well, about the fourth time I went out to play, I swung to drive the ball on the 5th hole, and couldn't move because of straining my back so bad, it put me in the emergency care center because I couldn't walk or even hold my self up to stand very long. Then with all the meds they gave me, I haven't felt good since. And that's in addition to fibro & cfs...

    So now I'm interested to see what others have to say on this thread in response to your question because I'm back to square one just sitting around feeling like that piece of furniture you were talking about, only furniture with a lot of pain, fatigue, depression, sensory-overload, and just feeling bad. I can't seem to focus very long and that is why I can't stay on this board very long even though I would like to.... Well take care!
  19. adonack05

    adonack05 New Member

    A quick question, does anyone with fibromyaliagia suffer with IBS.
    I was diagnosed with fibromyalgia and have had much problems with my bowels, as anyone ever experience this, please answer i am going crazy.[This Message was Edited on 02/17/2007]
  20. Suzan

    Suzan New Member

    It sounds like you have changed how you were thinking about things..that is a great first step.
    I do think we all feel as you were feeling at times. It is so easy to become the illness...because it really does change and have an effect on every part of our daily lives. But, you are right to take a look inward..and think about what makes YOU feel good..what can YOU do to enjoy your life more!

    A lot of days for me are just trying to take care of the cleaning and cooking in my house. Of course I have to take lots of breaks from doing the work...but I have always enjoyed taking care of my home..I just realize now it will take me a lot longer. My husband helps when asked...which is a nice thing...but even on days when I probably should just sit and rest..I will push to feed him a good dinner. I do it because it makes ME feel better to at least take care of him in that small way. Some days it literally takes me all day long to make the meal...but I get joy out of him eating and enjoying it..so it is worth while for me to do it.

    We all have things that make us feel valuable...this illness ( I have FMS) has made me feel like most of my life has been taken away from me. I have times where it takes over everything ( the past couple weeks that is where I have been) but I also know that after the flare...I will have a bit more energy..and it will be alot easier for me to do things that bring joy into my day.
    Someone recently said ( on this board) that they are grateful for this illness because it made them slow down and appreciate all the small things in life. I find that to be true for me as well...I go look at the sunset...almost every day...Before FMS..I was lucky to notice that the sun was setting most days! Those amazing little things can make your days feel full..even though they are different things than you used to fill up your day with.