Aging and CFS/FM Your Thoughts?

Discussion in 'Chit Chat' started by Marta608, Apr 6, 2008.

  1. Marta608

    Marta608 Member

    At the end of this month I have a birthday so I've been thinking about aging and illness - and living alone. I realize that there are many married or partnered folks in this situation and I don't want to exclude you so please join in. For the sake of fun, we can name this thread and post on it from time to time. I'm open to suggestions.

    First of all, as people age, they're urged to keep in shape physically and mentally. It's only smart. But what about people like us who are restricted by illness? What do you do, if anything keep your body moving?

    There are many people like me who do well to get the things done they must do to live, let alone e.x.e.r.s.i.z.e. I do some yoga, some stretching and a few lying-down Pilates things every other day but no cardio. Cardio exercises put me in bed.

    Here are some other things I'm thinking about:

    How much of our illness is caused by stress? Oh wait. Don't get your dander up. I don't mean that "it's all in our head" but that stress exacerbates our illness. How do you manage stress? Do you keep it all in? Do you have an occasional meltdown or do you melt down often? Do you notice a correlation to stuffing stress and how you feel?

    Have you ever gotten to the point of being able to let the frustrations roll off your back? If so, how? Meditation? Prayer? Something else? Does it always work for you?

    As we age - and I'm not talking 20s, 30s or 40s here, folks, I'm talking 50s, 60s and 70s - do we tend to lose a sense of fun that could help us cope with this illness? Do we take ourselves and the world too seriously - especially in this day and age? If so, how do we avoid it?

    What plans, if any, do you have for your later years? Do you have children or younger friends who will help you? My kids treat my illess with disregard, as if by ignoring it, it will go away. I don't think I can plan on help from them. And by help, I mean physical and emotional support more than anything else.

    If you live alone as I do, do you wish you didn't? If so, do you think it's possible to be accepted and loved with this DD? I have married friends with CFS/FM who find it a mixed blessing. It's a hard thing for anyone to understand, even if they love you and it holds them back too.

    When I was very sick during the night the other night I remember thinking a.) how good that nobody else has to be in any way a part of this, and b.) it would be wonderful if someone would bring me a cup of tea.

    How about you? How do you cope with the worst times?

    And please, I really don't want this thread to be a downer, just a realistic look at some thoughts and ideas. I'd like it to be a place of encouragement and hope while being honest. Can we do that? I think we can.

    I'll be interested to hear what you have to say. You'll find me in that rocking chair over there by the window watching it turn spring. Oh, and if you go by the kitchen, could you please bring us a cup of tea? :>)

  2. ckball

    ckball New Member

    Here is your tea and cookies too.

    I think this is a great thread for us "mature" people. It seems to be hard to keep up with the others anymore.

    I like you, feel the same about being alone, sometimes I'm glad I have no one to deal with or burden with my illness. The when every peice of equipment I own breaks down at one time, like the golf cart, rider mower AND the push mower and I have patches of grass 6 inches high-yes I would love to have someone.

    I guess that is why we have hired help, that is what I don't like. I find joy in fixing something myself, I study the manuals and sometimes it works and sometimes it doesn't.

    I think it would be nice to have someone to go to dinner or movie with but even then you can't depend on you to feel like when the time comes.

    My dogs are what keeps me trying every day, sometimes they are more than I can take, but wouldn't have it any other way.

    I do enjoy walking them, there have many times I did not feel like I could do but they will come and beg me to take them out so I drag myself up and go, most of the time I feel better after I do it.

    Excercise creates endorphines that we don't get by laying around. It really is a fine line between just enough excercise and none.

    Stress is a big one for me, when too many things in life happen at one time and I try to push threw it, I will just lose and blow up, the other day while working in my mud pit, I fell into a big muddy puddle, I got up and just screamed and hollered at the sky, glad I don't have a lot of nieghbors,lol. Then I lost it yesterday over the dogs barking.

    I know many do well to get to the bed from the couch and there is no pat answer for everyone, but I think isolating ourselves is the hardest to deal with. I no longer have any healthy real freinds, my daughter doesn't beleive I am sick either, my only support are my wonderful freinds I have made here.

    That I am truly thankful for, it does make living with all these issues easier knowing there is always someone here to hold you up when you don't have it in you to do it yourself. I look forward to coming here everyday.

    Good thread Marta, we will get threw these times one day at a time-Carla
  3. Marta608

    Marta608 Member

    Thanks for the tea, Carla. The cookies are very good too.

    One theme I pick out of each of your replies is "independence". You have both accepted your life and for the most part, find comfort in it. The other thing I sense is that you are both very strong women.

    I'm glad to meet you here - or anywhere - but this is what we have.

    Anyone else? I'd like to keep this bumped for the weekday crowd.

  4. fight4acure

    fight4acure Member

    I will not answer all of the questions you have, as I do not think that the whole internet needs to know all of my business, but let me tell you how I cope.

    Exercise when I can.

    Listen to lots of music.

    Pet my cats and play with my cats. They always bring smiles to my face. Just watching them makes me smile and laugh.

    Talk to lots of people, relatives and friends.

    Play some computer games and meet new friends online.

    Talk in here.

    A half-way decent doctor helps as well.

    Half-way decent medications for this horrible illness.

    People help me out.

    Try to think of my goals each day and my goals for the future.

    Hugs :)
  5. fight4acure

    fight4acure Member

    Your cat picture is adorable! :)
  6. Cromwell

    Cromwell New Member is hard.

    I think unless one is already "older" say, above 55 or so, the double whammy of "usual" aging stuff that creeps in, and the disease together are what really hits-just when we thought it could not get worse-it did!!! Some of us have been dragging this DD around for 25 years or more - when it was called "fibrositis". My DH now he is getting older (he is 55)often comments on his various aches and pains nowadays and says "Is this what FM feels like?" and I say "No that is what getting older feels like, FM is on top of that!"

    For me, I think that when I was younger with this, I was still able to summon the energy to chat to people, go out occasionally, etc. As I get older, I do see I have become more isolated.

    We went to a church meal last night with a small group and we almost did not go as I was so tired, but it was OK when we were there.

    Over the years friends have deserted due to the DD and its impact. For me, having a fairly young child at 61, is also a worry. The fact that he is disabled too. Also being so far away from friends and family too, makes us wonder if we should plan on a move to Canada at some stage, to be close to our only relatives here.

    The lady next door has health issues and she and a friend now share the house, which works for them.

    God bless Marta and eat the cookies!!!

    Love Annie
  7. sleepyinlalaland

    sleepyinlalaland New Member

    you've thrown out some timely thoughts for me. I'm a woman of "a certain age" (six-OH) and yes I've become especially reflective of late.

    I believe not ever being able to financially hold up my own end has doomed most of my relationships, and made me shy of seeking them out. My most disabling symptom is chronic isnomnia that I've had all of my adult life. I've never been able to hold full-time work for long without quickly descending to ZOMBIE ZONE. This has impacted past relationships and nearly destroyed how I see hard it is to constantly console ourselves "I'm not what I do". In this society that identity is just too overwhelming, to the point where I dread meeting new people, never mind PARTNERS!

    I also am still trying to come to terms with my current status of DISABLED (finally won SSD a few years ago). I find it hard to believe that "this is it", and my financial situation will never be any better. I am however SO grateful to have a subsidized apartment that is ALL MINE and that I LIKE. Yet, I almost avoid my neighbors. I actually look younger than my age and seem to be in much better shape than the typical resident with a much more obvious handicap. I feel defensive right away, when I even THINK about having to explain myself!

    Here's my darkest secret: I'm almost sorry I had children, more for their sake than my own (2 early 20-somethings). Their papa is deceased and I raised them as a very single parent. I'm sorry that they have a mother who is so unable to help them with the financial challenges of young adulthood. I'm sorry that they both seem to have inherited variations of my own condition. I'm sorry that one who is trying so hard to finish college will say to me "I'm so tired, I'm ready to hallucinate ...but I can't SLEEP" and who is almost always baffling the student health center with her ailments. I keep my worries to myself, but my nightmare is that she also will not be able to function in full-time work, and will she ever repay her student loans! And I'm sorry that my other daughter has found herself car-less and stuck in a nowhere relationship in an isolated area and I CAN'T HELP...can't even say come home and stay with momma awhile (housing rules). I'm sorry that I think I will never not-worry again.

    Boy, that WAS dark...sorry. On-the-other-hand they are WONDERFUL spirits and have always supported and understood my disability decision. I know I am believed by them, and they very freely express their love. I pray everyday that they will be able to find better footing soon. Because of my concerns for their well-being, I barely worry about myself or my future. I am grateful for a roof over my head and personal comfort and food computer!

    uhmmmm...sorry if I did not contribute to this thread as far as offering "encouragement", but I kinda appreciate the opportunity voice concerns which have been especially weiging on me lately. Thank you.
  8. Marta608

    Marta608 Member

    ...with the thoughts expressed here!

    I read honesty, acceptance, guilt, love, concern, compassion - such genuine feelings.

    Fight, you speak of acceptance and sound as if you're doing well with that. I vacillate more myself. It's like aging with me. I confessed to my doctor recently that on some level I believed that my aging was like the flu. Hard at the time but bound to improve any day. lol Now I know that "improvement" comes in the form of attitude and in acceptance of limitations, in being who we are. And I'm glad you like Sophie's picture.

    Annie, here, have a cookie. Yes, it would be an added concern to be ill with a younger child, especially one who has special parameters. Did you see the broadcast today on TV about autism? I thought of you. In your wisdom I'm sure you'll do the right thing.

    Sleepy, your thoughts touched me deeply. OF COURSE you want to help your kids; that's what mothers all want to do. And yet........ My mother died when I was 24 and she was GONE. I often think at least I'm here on the other end of an email or the phone and I bet you are too. I'm sure they wouldn't trade you as you are for anyone else's mom.

    I'm happy with this thread. I want it to be a place to speak frankly but not go bring anyone down and you've all done very well.

    Acceptance, as some of you have said, is really what gets us through.

    I'll bump this in the morning to get the weekday crowd but for now I'm signing off to enjoy the sunshine on my porch with Sophie - and our shaved guest cat, Honey.

    Hugs to all,
  9. Marta608

    Marta608 Member

  10. Marta608

    Marta608 Member

    Yes, it helps, thank you. But I must tell you that you're just a kid. Just turning 50?? Oh me, oh my! You have miles to go before you sleep.

    That said, I know that our illness makes it rough at any age and you do a marvelous job at all you do. You must take after your cousin in more ways than one.

    Thanks for stopping by. Do come again. I'm thinking of getting some more rocking chairs here by the window.

    Hugs to you,

  11. ckball

    ckball New Member

    I do beleive we must have something in our life that gives us pleasure, passion and productivity. Maybe we can't do everything we use to but it can be adapted in someway.

    Our town has a senior citizen center that paints every Tues morn at 10 am. You don't have to be over 60, they accept anyone that just wants to paint.

    Many places like AC Moore and Micheals offer all kinds of classes. It is one way to stay active and meet new people.

    I belong to a art club, we meet once a month for about 2 hours, have snacks and art competitions.

    What about book clubs or book club dinners. Sure we may have to rest the day before and the day after, but at least one day you did something you enjoy.

    I have found being more physically active the last few days, that it has fueled me even more. Of course, I just came out of a near month flair so I won't push to hard, but I will push and it ususally pays off.

    I think I will sit over here by the window in this wicker rocker with a cozy pillow and stare at the moon awhile before I leave. Carla
  12. Marta608

    Marta608 Member

    ...and glad to see you're in it, not off it. lol Did you have some of the cheese and crackers I left with the champagne in the ice bucket?

    Carla, I so admire your courage and determination. You're an inspiration to us all.

    I do find that I have trouble planning now. One reason I volunteer at the animal shelter is that I don't have to promise certain days or times. I can MAKE plans just fine but all good intentions fly out the window if I've had a bad night - or have too much on my mind. CBT may be in order here............ OR:

    Did you see Jamie Lee Curtis on Oprah the other day? I don't think of her as a guru but I lit up when I heard her say (about her looks, I think) "I decided not to give my energy to that." I love that and I'm using it.

    That decision, that mental moment, has so much to do with what goes on in our heads and thus our health. WE decide to what we give our energy. I've already begun using that saying as a little test on things that come to mind. It's one reason I got through a very long day yesterday. "Do I choose to give my energy to that?" It's amazing how many times my response is No. It works on both physical tasks and mental dithers.

    Hugs to all,

  13. ckball

    ckball New Member

    that I was off my rocker,LOL! When I was flailing sp? around in my mud pit and kept falling in pud muddles.

    Now it is a dust bowl-happy mediums would be nice, but it is hard for us to find those.

    We are either wiped out or on the run. I did watch Jamie Curtis and have always admired her for not going all "Hollywood". I read her story MANY years ago in LHJ maybe, I use to subscribe for years.

    It is because of her life as Tony's Curtis's daughter that she has chosen to put her energy in a "normal" life.

    OHHH Keaneu Reeves is on Regis and Kelly- now that makes me feel young again! He is looking pretty good. Sorry got side tracked, hehe.

    Thank you for your words about me and I do hope I inspire others, I think that may be my purpose in this world.
    To show others we can survive what this world throws at us, sure we get down and have our bad days but we have to make the most out of the good ones.

    There is mental pain and physical pain, the physical pain stops us from doing what we want which causes us the mental pain.

    In my case, I can live with the physical pain easier than the mental pain. I sat on a small stool last night and was beating dried mud clods from where I dug another ditch from my downspout to the hill that drops off. I put a drain in the ditch, but everything had dried up since I dug that ditch last week when it was wet.

    I used a rubber mallet, hammer, and small spade to bust these things up to cover up the drain and ditch. My arm was hurting by the time I was done, but the satisfaction of getting it done, out weighed the physical pain.

    It is a mind over matter thing for me, I know that many people feel the can't do this or that and are convinced there is no way they could do this or that. For some it is true, I get that.

    However, there are some that if put to the test of having a family member hopitalized and they were forced to do more than they would normally do found out they could accomplish it, sure you will crash at some point, we all do. However, if you can be there for someone else by getting dressed, out the door and in car to take care of someone else, why can't we do it for ourselves? Aren't we worth it?

    Please don't beat me with wet noodles, our mind is a powerful tool and it can convince us of things we allow it to. I am not saying it is in our heads, but how we react to our illness is. Does that make sense? It is our perception of ourselves that stops us from doing things we think aren't possible.

    Ok I will get off the soap box and go sit quietly in my rocker, the window has a beautiful view of the gardens.

    I hope I did not upset anyone, this is how I deal with MY illness, 5 years ago I could barely walk a flight of stairs let alone walk my dogs a mile or two. Just keep your mind open to the possibilties. Carla
  14. Marta608

    Marta608 Member

    It IS easy to settle and not expect more. On the other hand, some of us have found out the hard way the dire results of pushing too hard.

    That's the tricky thing about this illness; everyone is so different. When people on the CFS/FM board find something that helps them and others are disappointed when it doesn't do the same for them, it makes me sad. We must remember that each body is differently made, which is really a blessing.

    I know that you get this and I'm honestly inspired at how far you've come. I hear you saying that we should never assume that something is going to get us down forever, that we need to try and try again instead of just "wallowing in the mud". And mixed in with all that is accepting that if we do the very best we can most of the time, we're all heroes.

  15. Cromwell

    Cromwell New Member

    ...lines from a fave poem of mine you quoted I see. "I take my waking, and I take my waking slow..." T. R.

    I agree wiht you Carla. My MIL always said, "Well if you were that ill you would not be able to do this or that and How can you do carpentry and garden when you are supposed to be in such pain."

    I would always say, "I recall the British women who were forced to march and march when they were prisoners of war (Japan) and they were old, pregnant, sick, weak, starving, yet they did do it and not only that formed a band (they used their voices for the instrument parts) grew their own food eventually, took care of their own sick, buried their own dead etc.

    Now my MIL is just the sort to sit and do nothing when she has the slightest pain, many like her, so they really cannot understand how we try and go on despite the pain.

    For me, I have no choice, I have a DH with Traumatic brain injury and an autistic child with RA and other stuff to take care of. I hurt almost the same when doing nothing. The difference is that it is after doing something that the pain does intensify, as it has with age too.

    The fatigue is something else entirely. The fatigue is the thing that makes it the hardest and rivets us to the spot.

    Love Annie
  16. Marta608

    Marta608 Member

    You also said it well.

    I have more CFS than FM. On a scale of 1 - 10, I'd say that the CFS is about an 7-8 with forays into an occasional 10 depending on many factors including the weather; the FM is usually a manageable 3.

    I know I do less than some do, and yet others who do less than I think I do a great deal. To me, I don't do less or more but, rather, living alone, I do what I have to do. This means that on the day that groceries get purchased, little else is done. Vacuuming is like climbing Mt. Everest. Laundry, given modern technology and done slowly, isn't bad. Each day has one primary task assigned to it unless I've done "big things" two days in a row and the fatigue is riveting (also well put), nothing but rest is planned. That is one benefit of living alone.

    I was also thinking about something else Carla said - about our physical state impacting our mental one. The other way around is also true in many cases.


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