HealingWell
Search Close Search
☰

Balancing living a "life" with taking care of yourself

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/24/2011 5:17 AM (GMT 0)
I was talking with a friend of mine who has Fibro, she's had it for quite some time now. She was telling me how she want to take a dance class for adults... I told her I was in total awe and i didn't think I could do that. she then gave me a lecture on how i need to live my life and not let the Fibro control me. I have only had this for about a year. Does there come a point where you don't mind feeling like a martyr? I don't know. I do know i need to exercise again, and I will start tomorrow as I just got a new exercise bike. However, as much as I woudl love to take a dance lesson, the pain is not worth it to me. My husband and i used to do Wii boxing but now with my arms ALREADY in pain, i would feel like I am punishing myself. And I am SO exhausted in the morning that I have to force myself to do things. Some days i just sit at the computer wiht my coffee for most of the morning if I am feelng really awful. But I also volunteer in my daughter's class once a week, and i get out and run errands. And now I will start to exercise in the morning. I do feel sometimes like I lost my life, but atthe same time I am content with how it has become. I do know i need to get out more though but sometimes I just feel so unmotivated. Does anyone struggle with this?
Posted 1/24/2011 12:18 PM (GMT 0)
Bridget, everyone has different pain from fibro.  No two people are alike.  It also depends on if you have your pain under control.  That really is the key.  You really do have to exercise every day but it has to be gentle exercises.  I walk and swim as my exercise and I understand yoga is good, too.  Gentle stretching helps and I do that throughout my day.

 

If you start out on your exercise bike, only do a little today, then a little more tomorrow and see how your body handles it.  If you are sore, just stick at the lower levels until your muscles are used to it and then you can move forward again.  This type of thing is probably why your friend can dance now.  She has kept her muscles as strong as possible.  You really do have to keep moving with fibro.

 

She is correct in saying not to let fibro control you.  That's why it's extremely important to find what helps you keep your pain under control.  Notice, I didn't say try to be pain-free.  You would have to drug yourself up to be pain-free, I think.  I know I would have to and I'm not willing to live that way...dizzy, nauseous, etc.  So, I use exercise, supplements, ibuprofen with food and Tylenol and these do keep my pain under control.  You might need a different combination of things but you really still need gentle exercise.

 

I have done many thing I thought were impossible with fibro.  One of my biggest accomplishments happened 1 1/2 years ago.  I'm a widow so if I need something done, I either have to hire someone or do it myself.  And like many, money can be a problem.  Well, I needed mulch laid in all of my gardens.  I could afford the mulch but couldn't afford someone to spread it so I spread it....all 70 bags!  I sure didn't do it in one day but I paced myself and also found a way around my fibro to allow me to do that!  I will be doing that again in a couple more months and I'm not spring chicken either.  If you want to do something bad enough you can and will figure a way around fibro to do it.

 

So, get yourself motivated!  Fibro doesn't destroy your life.  It just makes it a little more challanging.  You can have a full and enjoyable life in spite of this illness.  I know because I have!

 

Sherrine 

Posted 1/24/2011 12:18 PM (GMT 0)
Just remember that fibro affects everyone differently, and try not to judge/measure yourself by what your friend is able to do. Exercise is really beneficial for fibromites, but taking a dance class, while fine for some, would be impossible for others. Sometimes daily gentle stretching is all you may be able to to. Other times a brisk walk or swimming may work for you. You may be able to take a dance class at some point, or you may never be able to. It doesn't mean you are letting fibro "control" your life.

Other than getting started on some gentle daily stretching/exercise (I'm not sure if I want to be the pot or kettle on that one, since I need to be more consistent with that, too smilewinkgrin ), it sounds to me like you are engaged in your life.

I think many of us here struggle with motivation; who wouldn't with unrelenting chronic pain? I think you need to find a balance of what works for you, try not to beat yourself up (harder than it sounds, I know), and try not to compare yourself to others (or let them do the comparing).

Hugs - Austen
Posted 1/24/2011 1:33 PM (GMT 0)

I have two friends with fibro.  One is a nurse practitioner and works a 40 hour week and very rarely takes a day off due to fibro.  The other one has just hired a housekeeper as she cannot even lift a broom anymore.  Everyone is different and the flares come and go inconsistantly with no rhyme or reason.  Two years ago I trekked up a five mile mountain with my grand daughters...I can hardly walk to the mail box at the moment.  I try not to be 'guilted' into doing things I know I will pay for later...it's not worth it.  Just do what your body allows and forget about what others can or cannot do.  You sound like you are on the right track and have a plan...good for you!

Donna

Posted 1/24/2011 4:09 PM (GMT 0)
I agree, it's not that you use fibro as an excuse not to do things, you just don't want to be in agony - and who can blame you for that??!

Debbie
Posted 1/24/2011 4:19 PM (GMT 0)
actually, she very rarely exercises.... that is why I was in awe. She is the type that doesn't care if what she does makes her in pain and in bed for a few days. I think I would rather be more consistent. So far, I have only had minor flares, although I have had pain throughout my body every single day. I would rather try and AVOID the flares as much as possible. For me, my way of taking control of my life is by eating healthy. But I think she was mostly thinking of social things for me. But she is a social butterfly so she can say that. I DO have things I do but most of them are NOT in the morning. I take my daughter to dance class on Thursdays afternoons, my son to drawing class on Friday afternoons, and then two Friday evenings a week, my husband and i host a Small Group Bible study in our home. (I am a pastor's wife by the way which is a w hole other story in itself becaue I probably don't do as much as most pastor's wives but I don' care). Sometimes i do feel lazy for staying home all morning, and i know i at least need to go out and visit people more, but at the same time, I don't want that to make me feel like i have no life. t hanks fo rthe support. :)
Posted 1/24/2011 4:19 PM (GMT 0)
oh, and I agree, no strong meds fo rme. I am looking into magnesium right now.
Posted 1/24/2011 4:22 PM (GMT 0)
duh... "two friday evenings a month, not week" LOL
Posted 1/24/2011 5:00 PM (GMT 0)
Bridget, like others said...we are all differant. Personally, I know things changed for me when I finally accepted the fact that I had a chronic pain condition. I initially spent alot of my time being angry.
It's natural to mourn the loss of good health, but after awhile you have to start living life,...it was my anger that was preventing me to live life...I let some go.

Pain certainally has alot to do with what we can do and what we can't....so does a mindset. You first have to believe that it is possible to do something.

If someone told me I would be walking 3 miles nearly everyday, I would of told them they were crazy. My beliefs changed but I think my pain level is still up there.

The exercise does make me feel more energenic and it gives me a purpose...I'm distracting my pain and it helps with my stress,

If I keep my stress level down, my pain isn't right in my face.

Maybe, I still have some anger in me and that motivates me to want to try to live like a normal person. I got fed up with feeling I
was unable to do things, there are things I can't do but plenty of things that I can and that makes me happy.

Having fun, being happy is what I strive for, so whatever it takes, I'm going to do what I can do to get there :)

Hugs, Robin
Posted 1/24/2011 5:45 PM (GMT 0)
Bridget, it sounds like you are one the right track!  I don't do things that I KNOW will cause a flare...unless I don't have any other choice.  But, I'm good at finding ways of doing what I need and want to do and also pacing myself.  That helps immensely.  I'm having company this weekend and started preparing for their visit over a week ago.  I set up a list of all that I wanted to have done before they come and then broke the list up so I only do a little bit each day.  It all gets done and I don't end up in a lot of pain, either.  Most of us are Type A personalities so that helps, too!  The perfectionism forces me to pace myself and plan ahead.

 

Sometimes, though, you think you can't do something but you don't REALLY know unless you try.  You definitely can't if you never attempt things.  I gave you one example earlier.  Another is last year my son came for a visit and wanted to go to Walt Disney World.  Boy, I wasn't sure how I was going to do it so I thought about it and decided to take my over-the-counter meds a little closer together.  It worked out that I would be taking only one extra dose of them than I usually do so I figured it wouldn't kill me for one day.  When we got there he wanted to know if I wanted a wheelchair and I declined.  I knew there were a lot of places to sit if I needed to sit.  Bottom line was I had a fabulous time, took a few rest breaks, road a lot of the rides...even Splash Mountain with it's five story drop!  What a memory!  We were there from 9 AM until 6:30 PM and I was hobbling back to the car but the memories were really worth it to me and I truly amazed myself that I could do it.  See, I wouldn't have known if I hadn't tried.

 

Sherrine

Posted 1/24/2011 5:52 PM (GMT 0)
Bridget -

I think I am similar to your friend so I may be able to give you her perspective a little more. She signed up for a dance class because she wants to do it and she thinks it would be fun. Every once in a while, I think, a person needs to say "to heck with it all, i'm doing this for me" and do something that sounds like fun and forget about the consequences. (I'm talking about fun activities, not robbing banks or anything illegal or harmful)

I do this quite frequently and while I may jump up a half a number, or a full number on the pain scale it always seems worth it to me. Did a new workout last week that had me crippled from pain almost immediately afterward and I could barely move for three hours... possibly the most agonizing pain I had ever been in. The next day I did it again because I refuse to let something like a stupid workout win. I have done it three to four times since then and while I still suffer afterwards the sense of joy and accomplishment I feel after having it done can beat out any pain.

I am also an avid runner, believe it or not. I start my training again next week now that my new scrips have been filled and I am adjusted to the drugs. I have my first 5k race in march and by the end of the summer I will be doing a half-marathon. During and after a run it hurts and burns and it is very hard to concentrate on anything while doing it. Once again, finishing a run or a race... I can only imagine the sense of pure joy I will feel at crossing the finish line.

I guess I may have the wrong mindset in the end, but I figure it really can't hurt THAT much more than it does every day anyway. So why not hurt a little more and try to live my life the way I want to. In the end though, I think this really hurts other peoples perception of me when they say the dreaded "But you don't look sick" and then I get that followed with "How can you run when you walk with a cane and say you have a disease?" - I just tell them that I can't let pain get in the way of my life and they usually stop asking questions at that point.

Michael - ID
Posted 1/24/2011 6:28 PM (GMT 0)
Bridget, most importantly, you have to do what is right for you.
You know your body better than anyone else. You also know in your heart of hearts how you are feeling physically and emotionally.

There are always some unexpected setbacks in life. We might have to alter our lifestyle to fit our needs....but we need to do what makes us happy too...it is a balancing game.

I mentioned in my earlier post that I can now walk up to three miles.... because of some health issues, I'm unable to exercise right now...so it's frustrating...we just have to "keep on Keep'n on"

You do sound like you are on the right track! :-)
Hugs, Robin
Posted 1/24/2011 7:30 PM (GMT 0)
Thanks, it is hard for me because I think I see things in black and white. I think I am more of the Type A personality, though recently I have become more of a procrastinator, but still type A in my thinking. I used to actually enjoy working out at the gym. I would jog on the treadmill or use the elliptical and I was religious about lifting weights. I had good muscle tone and had all these plans to lose even more body fat. I didn't want to just let myself go. And now I feel like my nightmare is coming true and i think it's because my mindset is that if I can't do anything 110%, then why bother at all. It KILLS me that I can only go slow on an exercise bike and I hate the fact that I am burning hardly any calories. I actually was still exercising when I was first diagnosed but have not done anything for the past 4 months. Thankfully, I have not gained any weight but I have lost all my muscle tone and now I feel like all my hard work before Fibro was all a waste! It's hard to feel like I am starting back up again from square one. Now, I don't enjoy exercise anymore, it feels more like a duty and I hate it.

I can't even walk for my exercise becaue it makes me light headed if it is more than a stroll. People think that is an excuse but it really does. i have a lot of symptoms of POTS where your heart rate and blood pressure don't regulate. i have not been tested for it yet though.

It's just hard to go from being an avid exerciser to not being able to do much, but it is encouraging that some of you have worked your way back to where you used to be.

i also have a bulging disc in my back so I need to be careful with that as well. I think that's partly what triggered the Fibro because I did something to my back which caused me to have referred pain in my hip, and after 7 months of limping because of it my body just gave way and made the pain spread throughout my body.

on a side note... you know what's weird? I did my bike this morning and it makes my ARMS hurt.... I didn't even use my arms! This is such a strange disease!
Posted 1/24/2011 7:37 PM (GMT 0)
Michael... i guess it just all boils down to how much it is worth it to a person. For me, what would give me joy is not so much physical activity, but talkign with people about health and nutrition. I am thinking about geting a certificate in Wellness Consulting. I am so passionate about good health and I feel it has helped keep me from major flares. For me, I just don't think the pain after doing certain things would be worth it, but I guess I never know until I try.
Posted 1/24/2011 8:26 PM (GMT 0)
I never was in shape so I was never upset over not being able to do things like that.  But I did become a little more active once I developed fibro.  When I lived up north and couldn't go out for a walk, I bought a walking in place video and that got me started.  The one I have has a little aerobics too but I can do it easily.  It's a Leslie Sansone video and she has a large variety to choose from.  This might help tone up some muscles. 

 

But, I do know what you mean about muscle loss.  I've lost muscle strength and I sure don't like that at all.  So, I keep trying and doing the best I can.  That's all you CAN do is the best that you can.  Just don't give up the fight and throw in the towel.  There are wonderful times ahead of you. 

 

I think you have a great idea with Wellness Consulting!  I know that helping others has probably helped me more!  I feel useful and helping others takes my mind off my illnesses and puts a smile on my face.  So, yes, you are doing great because you are taking control!

 

Michael, I think it's wonderful that you can do the things you do!  If I ever went to a gym, they would be carrying me out on a stretcher but you are probably a lot younger than I am, too.  Plus, I've always hated exercise.  I do it now to help me be in control of fibromyalgia.  By the way, best of luck on on your 5K race and the half marathon later this year.  I'll be rooting for you!

 

Sherrine

Posted 1/24/2011 9:58 PM (GMT 0)
I agree with Sherrine. Take good care of yourself; build your strength and stamina slowly and carefully; and you'll have a better chance of being able to do that dance class without regretting it.

As the others have said, everyone is different, and it may be that your friend's fibro is completely different to yours. Focus on what *you* are able to do, and don't let critcism from others wear you down.

Best wishes,

Ivy.
Posted 1/25/2011 4:35 PM (GMT 0)
Thanks everyone for the encouragment. I exercised yesterday and today I am in so much more pain but I have to keep telling myself it is worth it. As for going out and seeing people, maybe I am a little depressed because I don't feel like i have much motivation. I think that is partly personality and part the Fibro keeping me down. I think the exercise may help with my mood though.
Posted 1/25/2011 7:13 PM (GMT 0)
That is the biggest thing you can do Bridget, find something you enjoy doing and do it. If it is exercise then go for it. You like talking to people and helping them then you need to do that 110% and ignore the fact that you cannot workout just yet.

I am 30yrs old and I am 11 years into FMS and I recently got back to working out about 2 years ago... so it took me a long time to cope and deal with it to where I could assume my normal activities again. It still hurts when I run, but I deal with it. In fact I like the pain when I run because the more I feel something the more I get used to it.

Find a way to make yourself feel good and take your mind off the pain and you will feel much better. The simple act of doing something you enjoy and are passionate about will lessen your pain normally because you don't have time to dwell, (i have done this too much myself) and you have something you want to do. You have a reason to wake up and get out of bed.

I know the Pastor at my church and I know his wife and she is currently going to school. You may or may not be incredibly religious but you married the man and not his profession so don't feel guilty trying to do what makes you happy. If being a pastor's wife doesn't inspire passion in you then don't worry about it, if you don't have the passion to spend all your time helping with the church then don't worry about it. Right now you need to focus on you, your passions and desires so you can make it through the worst parts of your disease and move on in the grieving process to acceptance.

Take care of yourself,

Michael - ID
Posted 1/26/2011 12:54 AM (GMT 0)
Bridget,

I'd agree that we can do things we never thought we could, when pushed. From about 2003-2008, when my parents were getting feeble and then dying (4 months apart) I was, increasingly, their mover, errand runner, driver, interface with the medical establishment, bill-payer, and pretty constant companion, because my brother couldn't/wouldn't/was out to lunch. It was never a question of being able to do these things, it was just a matter of paying for it later. I'm still resentful that I didn't get more help (bad, I know) - I would have done a lot of things differently at the end if I'd been thinking more clearly and hadn't been in so much pain.

I don't push myself nearly as much now, because there's no need for it, and I live with others who could easily do it. Also, it seems I did damage my body somewhat during those crazy years. But I'd do it all over again, because they were two of my best friends and they were so helpless.

Debbie
Posted 1/26/2011 1:40 AM (GMT 0)
Bridget, Good for you on getting back on the bike!!  I also eat as organic as I can, also cook as healthy as possible. 

To buy organic is just so very expensive so my best friend and I have a huge garden for our veggies that we can and freeze all overages go to Meals On Wheels. 

My husband and I split a cow with another friend.  It is a local farmer that has grass fed beef that is free range.  We also buy a 4-H pig every summer at the county fair.  We do this in the summer when there is more cash flow, winters are bad, no cash.

My exercise revolves around my animals, my kennel has 6 runs and I have 4 German Shepherds right now.  In the winter everything freezes (poop and all, gross I know) but when the thaw starts cleaning 4 runs of heavy shovels about kills my arms.  Then we have obedience class and Schutzhund training kicks my butt too but I love it.

If you ever have any tips on healthy cooking feel free to share.

Posted 1/26/2011 4:35 PM (GMT 0)
thanks for the replies... I love this board!

GDSgirl...good for you for eating so healthy! I know it can be hard at first to get used to but is so worth it in the end. I would rather pay extra for natural/organic food then pay for it later in medical bills! (I know some things can't be avoided though) They key for me is finding out what is absolutely necessary to buy in organic. Some fruits and veggies have higher pesticide content then others. Like, bananas and oranges do not need to be organic.

We also buy grass fed beef, and we do buy organic, free range chicken, plus free range eggs. Do you live in a big Ag area? We do, and it is such a blessing! I know the person who owns the cow pasture close to here. I know not everyone has access to that.

What I think has really helped me is Green Smoothies! Sounds gross, but they are really yummy! I just put spinach and/or kale in a blender with frozen fruit such as blueberries, flaxseed, a bananas, some juice (like OJ) and water. I fe el so much better once I've had it. I can't say it is a miracle cure, but if i go a couple of days without it, I feel worse.
Posted 1/26/2011 4:46 PM (GMT 0)
Bridgett, I forgot to add free range eggs, I have chickens LOL. They are 3 years old noe and are not laying, I actually had to buy 2 dozen this winter and there is no comparison.

I have tried the smoothies but hate cleaning the juicer and I burned up my blender making liver bread for my dog treats.

We live 20 miles south of Pittsburgh...GO STEELERS!!!.......and there is a good bit of agri land around. We have 15 acres so we are considered agri also.
Posted 1/27/2011 3:38 AM (GMT 0)
I think all of the above is true. Every fibromite (?) is different.

I could not, at least at this point, ever do a dance class, I get winded climbing the stairs. However, when i get stronger and can handle something besides the necessary it will be something i love . As your friend visualizes dancing i visualize riding my horse, so that would be my extra special "treat." It might put me down a few days but for the horse its worth it.

I have trouble pacing myself. For me its one or the other, which LOL leaves me in bed more than anywhere else. Maybe I'll learn but i doubt it if i feel good (which seems rare lately) i will take full advantage of it untilI well, collapse.

Lately however, its all I can do to keep up with the laundry, and keeping the house picked up. I am not in pain (thank God) but I am exhausted. I know people, some, think I need to get out. I have to giggle they may be afraid I shall grow a beard and become a hermit. Not the case, by the time I get things done that need to be done, I am done and the last thing I want to do is go out. It will get better, at least it always has always been cyclical,
hope it still is and i wont forever be stuck here.

Please extend yourself for what turns u on!! Lisa
Posted 1/27/2011 3:59 AM (GMT 0)
Rose, I have 2 horses and no one to ride with :-{  I won't ride alone, been there and done that many years ago and was too stupid to realize how dangerous it was.  I need to find someone to take one of my horses out on a trail ride.
Posted 1/27/2011 4:22 AM (GMT 0)
I wish I had a hobby that was that worth it to me. I never really had one, besides playing the piano and even that doesn't interest me anymore. i feel so one sided because all I am passionate about (besides God) is health and nutrition but mos tpeople don't care. I would like ot learn how to ride a horse someday but I'm afraid i would fall off adn then hurt even worse.
✚ New Topic ✚ Reply