I feel like I've probably asked this about 6 times already, possibly in different ways.
This is still one of the hardest parts for me though.
Fatigue, pain, and absolute weakness/exhaustion.
I have been pacing myself, trying not to do too much, even when I feel "ok". I had a busy week, which is never good but today has been rough. I suppose it's caught up with me.
I have spent most of the day resting but thought I should do something with myself, had a small list of chores to do (take out garbage, feed animals, vacuum and put a load of dishes in). This is not a long list. But all I've done is take out the garbage and feed animals and I feel like death. I know know no one's ever died from dirty dishes or a hairy floor (dogs) but I don't have any help today and thought I could do it.
In these instances, do you push yourself? Or just figure 20-30 minutes up and around is all you can do for that day? I never know if I'm "hurting" myself one way or the other. By doing too little or too much.
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cheshcat
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Hi cheshcat
I am just the same so I reserve energy for absolute necessities and for two short times of exercise ie walking.
This is in spite of getting Help occasionally from a son/friend.
Thought I felt great last week, did the vacuuming, dusting and washed clothes one day; next, did the windows and glass.
Tried a few gentle press-ups against a wall...
Paid for it with exhaustion, swelling, pain etc but not a flare, just the price for over exertion!
Limiting, frustrating reality, isn’t it?
I try to remain thankful for what I can still do.... breathe, think, get around a bit, you know what I mean. Small things but still able in those ways.
Yes! I suppose we are all in the same boat. I just can’t believe I can’t go out a few days without paying dearly. It feels like I’m not “helping” my body by not being active and I miss doing active things but the reality is, I really struggle if I even try to do 1/4 of what I use to do. It’s depressing. I’m like a caged animal, pacing the fence line.....yep, fence is still electrified.
As far as resting/ 'recuperating' if you're in deep exhaustion/ fatigue . . . 🤤 , your body is screaming 🗯🗯 at you for rest. 😴 💤 🛌
Nothing you can do ('motivation-wise'/ 'positive thinking'-wise), is going to budge a depleted/ tapped out battery 🔋. 😵
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Lovingly 💓, guilt-freely, allow your batteries to recharge 🔋⚡️⚡️ . . . 🔋⚡️⚡️ . ☺️
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Gather your spoons 🥄🥄🥄 ( healthunlocked.com/nras/pos... ) [after your 4-leggeds 🐶 🐱 🐭 have licked 👅 them, of course] by allowing your body to rejuvenate 🙋 🙆 💁 , then attempt chores. 👍
Oh so frequently "the spirit 👻 is willing" but the body just isn't able 😞 .
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Why beat yourself up over it? 😖⛏
[Of course, unless you're 'into' that 'sorta thing' — self-flaggelation 'n all . . . 😳 )
I mean, why deny (or judge) any individual their 'unique pleasures' . . . 😯 😂 🙃 ]
Kai- thank you 😁 you are so sweet and funny!! You are right. My body is screaming at me. You’d think I’d enjoy resting more 🙄 I need to reframe my thinking on resting. I’m sure it’s helping me in some way, learning how to delegate and rest. It’s a weird feeling to literally not be able to “push” your body, it just stops working and starts screaming!!! Gather my spoons, you are right! Thanks Kai ❤️
For a time, we 'inhabit bodies' that no longer 'do our bidding'. 😧 😳 🙃
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'Worst comes to worst' if loved ones 👨👩👧👦 don't/ can't 'pick up the slack' (after you've nicely ☺️ requested help), then "tough 🍪🍪's". 😯
"It doesn't get done." 😳
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[Have to 'make peace' ☮️ ✌️ with that possibility (should it get to that point). 😑 🙏 ]
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If/ when they tire of 'living in filth' 🏚 , or 'going hungry' 😣 . . . they'll be motivated to 'pitch in'. 👍
[Kindly, don't allow yourself to become a 'martyr' ✝️ 🛐 . You won't be doing anyone any favours by 'running yourself down' further. 😔 😞 Allow any (imagined) halo 😇 to tarnish 'n slip; you can re-polish & re-tip it back into place 💫 when feeling better. 🙃 😉 ]
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Allow yourself time to heal. 😌 Allow those around you to learn the true meaning of responsibility, help, service, compassion . . . 🙏 👍 😌
[They may not thank you (or appreciate) it 'in the moment', but down the road 🛣 — whomever they 'partner with' 👰🤵 — those partners will be forever thankful for your instilling (early training), responsibility, care . . . into them. 😄 👍 )
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In meantime, allow yourself to focus energy 🔋 ⚡️⚡️on you 👩 .
With limited energy ⚡️, determine what is priority, what is critical? 🤔
(Improving/ healing 👩 seems a top priority? 🤔 )
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As you improve ☺️ , you can return to the usual 'give & take' balance ⚖️ , the natural ebb & flow 🌊🌛 reciprocity 🤝 of household chores & daily living.
In meantime, no shame, no burden, no guilt . . . of being on the receiving 🎁 end of loving kindness 'n care. 😘 😌 🙏
You've 'done' for them 👉 👨👩👧👦 , now they can 'do' for you 👩 👈 .
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Ring the bell 🛎 when you need help. ☺️
Clang the bell louder {{{ 🔔🔨 }}} if they're not hearing 👂 you. 🗣 💬 🗯
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Aside:
You might find this audio interview 🎙 with Matthew Walker (sleep scientist) interesting, cheshcat: Quality Deep Sleep: Physical/ Mental Restoration & Improving Health: healthunlocked.com/cure-art...
You have well thought out and informative posts! My therapist said something similar, I'm doing not doing my family any favors by not letting them take care of me. Being forced by my body, I think I've just really resented my body for stopping to do my bidding!
I hit a wall on Saturday when I posted and for some reason, this still surprises me. Now I'm still paying. I am a very slow learner it seems.
Thank you again for taking the time to write down so much helpful advice and links <3
YES: So much this lol. I've talked about this with my therapist. It is arrogance on some level, thinking I'm the ONLY one that can do things or do things correctly. I just don't like being told what to do - certainly not by my own body!
. . . To the degree of our stubbornness 😠 will be the degree of our suffering 😩 ? 🤔
Hi Cheshcat....what is light work for you could be a real slog for someone else.
I decided a long time ago I must be really lazy because I achieved so little, but nowI know I was just trying to do too much altogether.
I know this sounds really anal..but when I'm feeling really stressed I do NOTHING...except write a list....then as I gather a little energy I attack the list in priority order.
I don't have any but I guess you gotta feed the animals...after that just one task at a time & i's surprising by not overdoing it how much more you get done.
Of course I do live alone so I'm the only one who sees the sometime chaos..but if family members don't like...let them clear it up!
Rest up until your entry picks up...it will pay off in the end!
Yes, I feel so lazy. It's like my purpose in life has been taken away and now I don't know what exactly that makes me? Like how am I contributing? If the tables were reversed, of course, I would never think anything of caring for one of my family. My middle daughter had knee surgery and mono one year, she was in bed for almost 9 months. She's 21 now and the main one taking care of the house and me. I suppose somewhere theres a good life lesson. I just wish I didn't feel so dependent.
This is exactly what my mom says! She's had RA for 30 years. She said I'm just trying to do too much! Lower my list. She feels I'm still not resting enough. But I'm only doing like a quarter what I use to do. She just gave me the speech again last night, I frustrate her.
Wonder what your "entry" is LOL....of course I meant. ENERGY,
My excuse is I have a a locked Trigger Finger!
But please do listen to your mom....if you preserve what energy you have, you'll wake up one morning with just a little bit more...until you feel you can do a bit more..but push yourself & you'll end up in bed all day!
Believe me that is true, so plug In those earphones & listen to whichever book you have always meant to read. I love my Kindle, but right now I can't hold it!....I'm dictating this at my iPad!
I’m having trouble typing because of two fingers that don’t want to work correctly. It’s hard to type correctly without all the fingers working as they should!
It sure does feel like punishment when I over do it! You’d think that would be clue enough.
You all never fail to make me feel better about being stuck in bed ❤️
Right now I really understand where you are coming from...I just ran my hand through my HAIR for goodness sake & my locked finger got caught & it really was absolute agony. At times like this I honestly feel like giving up!
But we don't do we cheshcat?
I've been cursing this disease for 18 years now.....& I just have to find my way around everything it throws at me.....as you will once you get the right meds for you!
I'm sure your daughter & your mom just want you to rest so that they get the real you back & you can only do that by taking it easy.
I was going to paint a fence (only a little one) today.....but finger won't let me, so I will sulk instead & with very bad grace do whatever I can do with my left hand!
<3 - it's so hard, having choices taken away, how I defined myself is now gone. I'm trying to look at it another way, just entering a different stage of life, I'm sure I'll figure out but it's a bit of bumpy ride along the way! It's a good reminder for when I do get medications that work, to keep on resting!
No your choices aren't gone for good cheshcat, things will get better when you get the meds that suit you.
It can be a long old process but most of us get there eventually.
In the meantime, just let your mom & daughter know that you know they mean well when they tell you to rest ...but you are allowed the odd rant occasionally!
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- certainly not by my own body! 
Too much snow
Do you have periodontal disease too?
I can do it, you can do it too - Another great achievement of a RA patient!
Steroids - how much can you take without doing any lasting damage?
Why do my shins itch so much? 
