Thursday, September 24, 2009

Frustrations!

**Warning** This post has a bit of a rant tone to it, which is a symbol of my personal frustration. I apologize if the tone disturbs any of my fellow "positive-thinking Fibro Mates".



Those of us who have had Fibro for a while know the "old" frustrations well.

In the beginning when we're diagnosed we go through some self pity, followed by excuses, rounded out by days in bed where we excuse our self pity by quoting whatever info we've found online to validate our decision to "give up". "My online group has lots of women on it who say they can't get out of bed, so I'm not alone."

No, you're not alone. There are a bunch of Fibro Mates who can't get out of bed everyday...or maybe...they just won't. FACT: Most bedridden Fibro Mates have ADDITIONAL conditions that hinder their daily abilities. Another FACT: Most of the Fibro Mates I know personally have additional conditions that DO NOT hinder their daily abilities.

So where does that leave us? I think it depends on the severity. I would never tell someone with Fibro and terminal cancer to get out of bed and exercise just like I would never tell someone with "just" Fibro to stay in bed and rest until they felt better.

I've said it often in the past...we have to be HONEST with ourselves. Brutally so. Are we doing all we can to do the best for ourselves or are we letting excuses bring us down. Only the sufferer can answer that question.

I think it is clear where I stand on the issue of excuses since I feel I was once the biggest lump of excuse laying trash talkin' defeatist on the planet.

That being said I should clarify as always that pain and being bedridden isn't to be made fun of or taken lightly. I still have a good 4-5 days a month where I feel completely sapped and unable to do much of anything. Even more days out of a month I feel no ambition and I STILL make up excuses. "I'm too tired to clean house today."

BUT...those days have become the exception and the norm is me pushing through my exhaustion (no easy feat as we all know), pushing through pain (again...suck-age!) and forcing myself to write every day to get my newest book done.

It takes drive, it takes determination, and a more than a little bit of self-honesty.

So when I get a letter that basically tells me that I've ruined someones life because they exercised and pushed themselves for 10 days and felt no better (in fact felt WORSE) and they wish they never would have listened to me...I get frustrated.

Actually, I get mad. And then I get frustrated.

Having Fibromyalgia is tough. Doing a lot of research on the subject is even tougher because everyone claims different things. (This doctor says anti-depressants are key...this one diet...the next one anti-seizure medication) But there is ONE thing that everyone can agree on. Exercise helps.

Of course, exercise SUCKS for Fibro patients. We don't enjoy it. And it takes a while to see the benefits.

Why? I have a theory. Our bodies are so depleted of the "happy" brain juice that we have to fill that deficit before feeling anything positive. And of course, exercise rarely feels good for us, so it is really hard to keep going without eventually deciding (erroneously) that it is doing nothing and quitting.

Ten days...is not nearly enough. Talk to me after ten months. That's about how long it took me before I started noticing benefits. I used to have migraines 5-6 days out of a week. Now I have migraines 4-5 times a month. With physical therapy 2 times a week I was able to improve. Now I walk daily if I can manage it.

And don't be afraid to take a day off if your pain is simply too much. Just make sure it is the pain that is stopping you and not your own excuses.

On top of this letter I responded to TWO posts on two separate loops that complained of similar issues with exercising and "doing stuff" and with both I was firm. Perhaps more firm than I would have been prior to this letter. (I would love to share the letter but I always give my readers anonymity if they request it and this letter did.) All of us HAVE to make an EFFORT to get better. We don't have a choice. Well.. a good choice. The choices are to push ourselves and live our lives or to fold and let Fibro dictate what we do.

The words sound easy. "Oh just start exercising." But it isn't! Exercising with Fibro isn't for the weak. It HURTS. Gods, it hurts. There isn't a day that I exercise that I don't hurt. But there are days where I exercise where it hurts less. Of course, it took me a year to get here but I'm glad as HELL I pushed myself. I'm glad as HELL that my husband told me I wasn't worth respecting because that is what it took to get me off my butt ... I cried a lot. I still do, through the pain. Nightly actually. When I've gone my whole day through pain and managed to make it to the bed without collapsing before hand...I'm proud! And every day is like that for me. Every day is a struggle still but I am living!

So, Anon, ten days is simply ridiculous. I know, however, how right now, the pain of working out is making you irritable. Without seeing benefits it is soooooo easy to say "screw this!" and just quit. But if you're reading this I implore you to keep going.

Push through the pain, the crankiness, the feeling of "what is it all for" that we all get and tough it out! (LOL. I get in trouble for telling people that all the time but here it goes again.)

If the exercise you're trying hurts too much (and it happens to me all the time), try something else to switch it up. Share the pain with other body parts so to speak. If you walk each day like I do (and for some reason lately it makes my chest muscles hurt) then walk once a week and then yoga another day or tai chi or dance or get the Carmen Electra Lap Dance video... (Yeah I've tried it! So what?!?)

Bottom line is this. There are no quick fixes for lack of energy for Fibro. There are no miracle pills that will take away all your pain. But...exercising puts you on a good path. But the road...is very long.

You may feel as if I'm pulling something out of my backside and throwing it on the screen for all to read without any validation but you're wrong.

I've been through it myself and I feel the difference. I know many other Fibro Mates who I talk to regularly that like me...struggle to exercise but in the end, feel the benefits.

If you believe you will fail....you'll fail. But I believe in you. Please, "keep moving forward".

May you find something positive that speeds you towards Fibro remission. Okay, rant off. Phew, I feel better.

All my best,
Gin

***Still to come:

-Men and Fibro (waiting on a few emails for this one)

-LDN (Low Dose Naltrexone.)

5 comments:

  1. Good for you Gin!

    I struggled so much to start an exercise routine, and glad I have pushed myself through it. I still deal with the pain and have days I just do not feel up to moving. But I do something. Starting out with a brisk walk, working up to a jog for 10 minutes and back to a walk as much as I can.

    I also have an exercise ball that took me a while to master. I would try it, put it away. Later trying it again. Now I use it daily too.

    Exercise is a struggle, but overall in the end I do feel better. Not initially afterwards of course, but the next day after I get to moving around and wanting to save up my energy to do it again. We can all benefit from any form of exercise, little steps become big steps.

    Cheers!
    Teia

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  2. I must keep myself going. I sometimes have to do it in tiny amounts. But I keep busy to keep the dragon from beating. me. I am so different from my husband who also has FM. If he is in pain he sets in his cahir and does nothing. Then complains nbecause he hurts.
    So far I do very small amounts pf prescription pain meds. Thou I know if I had more int he ouse ona bad day I would take them.
    Today is one of those days. I slept terrible ,all my joints ached. We had company so I drank half a cup of tea to try to stay awake. Yep did well up all night. Today I am dealing with numb extremities. I ised to be on large doses of neurontin. Maybe me feel horrible so I quit. I do take some herbs and they help at times.
    We live on 80 acres and right now it is time to get winter wood in and get everything winterized. Hubby just asked why I was laready bringing firewood up . Well I have to do it a little at a time.
    I have retired form nursing due to my fibro fogs. i would never forgive myself if I gave someone the wrong med and caused them harm or death.
    Yes It takes more than 10 days it takes everyday to keep up the battle. There is days the dragon wins but I keep them down to the littlest amount I can. It is almost like a game. and I love to win. Have a great day

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  3. Well said! I started my exercise program with a goal of 5mins/day per my doctor's recommendation. And I am increasing it by 20% every 14 days. Sure it was hard in the beginning, but now my energy is improved AND I've lost weight.

    There are days I don't exercise, for one reason or another: depression, co-morbid pain, already overexerted. But I have not quit, and I don't plan to. I have a goal, with my sights set!

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  4. As always, Ladies, you are an inspiration to me and I hope my readers.

    All my best for you!
    Gin

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  5. Exercise is important for everyone, ill or not. We need to keep our muscles usable or they will waste away.

    The attitude of "exercise sucks" can be a bit of a deterrent for us, fatigued fibromites. I actually enjoy the walks I take with my husband - it gives us some together time to enjoy - and my pains tend to fade during the walks, which is a nice benefit. After any exercise, though, the self-esteem boost is a good feeling and a nice motivator. I think the key is finding an activity that is enjoyable and making it part of your routine.

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