Spoons Are Not Just for Soup Anymore

That's a lot of leaves...   acupuncture and shiatsu massage has always worked beautifully for me, too, but you're right - it seems to be largely a temporary thing in terms of pain control. I do find that I feel better in general when I get acupuncture and have my qi flowing freely. Yes, I know. It sounds all airy-fairy, but when you really pay attention to your body while you getting the treatments, you can feel yourself getting unblocked.

And I agree again. Learning to live with this disease is a never-ending game of trying to figure out the latest thing.  It certainly does keep you on your toes!

If I could get acupuncture every week, I would!

My minimal leaf-gathering technique - unfold a very light-weight tarp in the middle of some leaves.  Rake them gently on to the tarp.  Thread the tarp rope through the corner grommets and gently drag over to the back of the lawn.  Repeat as needed, only as long as it doesn't hurt too much!  I count leaves by the number of times I have to drag the tarp.

I'm almost afraid to ask.... how many drags?

5 - 10 depending on the day.  About 30 feet to the back, maybe.  Just enough to make me feel like I'd done something!

whoa, Nellie!  That's impressive!

It's really a ballet dance, not yard work.  I carefully maneuver the rake so some leaves happen to fall on the feather-weight tarp (weighs as much as a couple of file folders).  Avoiding the use of my right thumb  manage to thread (after several tries) the string through a couple of holes. The string has a loop tied at the end so I can put it over my hand/arm and drag without using my fingers individually.  I walk as if on eggshells to lessen the impact on my feet (my one hip will be sore later ...) and pretend that I AM REALLY DOIN" WORK!

What I didn't say in the post, is that only a quarter of the leaves have fallen - and I probably won't be able to repeat this indefinitely!

It's like taking that sip of wine for the taste, not the effect!  (There: I left science out of that one!)

We will have to talk on the phone sometime - less hand work!  If I talk too much, tell me and I'll stop!

We definitely need less hand work - love the conversation, but my body gave out before my mind did.

I had pretty bad depression before RA and I agree that when they team up it's a killer. But if someone could wave a magic wand and take one of them away, I'd still have RA. The key (which I am still learning) is to slow down and cut back. All I do is work and family now. Remodelling is something I  fantasize about someday affording to pay someone to do. Sometimes it works, but I took a sick leave day today because I am also out of spoons. And since I slept instead of doing dishes or laundry I'm probably out of real spoons and clean underwear.

That last line made me laugh - thanks for that!

And thanks for the perspective.  You're right, you can wishes much as you want, but the RA will still be there and the trick to living well with that is to face it and act accordingly. I'm still learning not to use all my spoons. Maybe someday I'll finally clue in...

First, I want to tell you that it gets easier. I see from your profile that you haven't  experienced relief from methotrexate yet - how long have you been on it? It usually takes about 6-8 weeks to kick in, so it may yet help. If it doesn't, talk to you rheumatologist about maybe increasing the dose, supplementing with prednisone or another of the DMARDs (disease modifying antirheumatic drugs likelike methotrexate, Paquinil, Arava or the Biologics) or switching to another medication altogether. Medications work differently for different people and finding one or a combination of medications that works for you can be a bit of a trial and error process.

Living with RA is about learning moderation - not a concept that I'm fond of, but every time I go to extremes, I regret it later. Of course, you being a single mother makes it even harder to practice moderation because you're the person who does everything. Keep in mind that because you're where "the buck stops" (so to speak), it is essential for you to have reserves of energy because if you can't get out of bed, there's no one to pick up the slack. That may mean that you have to get used to living in a mess for longer time than you otherwise would because it'll take you longer to get everything done. Are you on medication for your bipolar condition? You may want to ask the doctor who's supervising your bipolar treatment to link up with your rheumatologist so your medical team talk to each other - it may help if both doctors are aware of the impact of one condition on the other.

Do you have family or friends living in the area? Call in the troops if you do. It's hard to ask for help, but you're running a marathon, not a sprint and it's important to pace yourself.

I'm glad you found this site - we have a wonderful community of very supportive users, so please post questions and SharePosts about your experience whenever you need to vent or have questions.  You may also want to read other people's posts. There's nothing so empowering as finding out that there are people out there who know exactly how you feel.

What a lovely story!  I'm close to tearing up myself and I'm not even seeing your spoons. You have a great family.

I may have figured out that I need to sit still, but I haven't quite yet figured out how to shut up that little voice that recites my list over and over and over again, reminding me what I'm not getting done. It's a work in progress...

Sometimes, there's nothing for it and you just have to go ahead and use up your spoons.

Thanks for your comment!

You're very welcome - I'm glad I could help!  if you're having trouble with other people's weird reactions to your RA, you may want to check out a post I wrote a while back about dealing with friends and family.

like I just mentioned to somebody else, it's a work in progress. Some weeks, I'm very good at rationing my spoons and other ways, I use them all up and pay for it. The trick is to have more weeks where you remember to ration.

I used to judge myself way more harshly than I do now, although I'm still pretty mean to myself at times. Several years ago, I realized that in order to survive, I had to learn to be nicer to myself, so when I notice that I'm beating up on myself, I have a stern conversation with myself, saying it's not okay to treat people like that. If somebody treated my friends and loved ones like that, I would be all over them, so why am I being mean to myself? If that made any sense (there were a lot of myselfs in that sentence).

 Hi Everyone,

   I so needed to read all your comments today.  My body shuts down but my mind doesn't...I say those words often...if only I could teach my mind not to tell me I am a failure. In the last year I have gone from working 5 days a week to now only working 4 days and often I call in sick for one or two of them.

   I had this horrible dream this am...I dreamed that I collapsed at work and no one would help me...I laid on the floor and crawled from co worker to coworker asking them to help me...they all told me to quit faking and then ignored me...I then crawled out to my car only to find it was upside down in the parking lot...I know it was only a dream but I have not been able to shake the helplessness I felt. 

  I know I have to take care of myself and I know I can not go to work when my knees make me hobble and moan and groan when I walk....but I cant help feeling like I am letting everyone down.

 I am sorry that others of you have to feel what I feel but also am incouraged that others with this disease struggle like I do...and that I am not this hopelessly lazy person that my mind tries to tell me I am.

I had to quit work because I could not care for myself.  It's been three years, since then.  I agree that the mind just keeps going.  I feel I have to be doing something constructive.  I hated not working, so I just recently got a part time job.  It's all I can do to work four - 3½ hour days.  And I may be using too many spoons yet!

It's not always about how much work, but that you do work. Meeting for work is important - it makes us feel productive. Check out my answer before this regarding adjusting expectations of yourself. I'd also recommend that you check out my post on working with RA for links to resources that may help you make the job easier to do. You may also want to read a post on going back to school - sometimes when you have RA, it's a matter of shifting career tracks to something less physically demanding and that post also has links to resources that may help inspire you.

That's a horrible dream. I sort of remember that you have had trouble with your coworkers before?  check out my post on working with RA - there may be some resources in there that can help you accommodate some of the tasks a new job so it's not so hard on you physically.

The guilt that you're "letting people down" is common. Personally, I've struggled with it quite a lot, but I'm beginning to learn to be more kind to myself.  it's been looking more closely at my expectations of myself and a lot of hard emotional work has gone into learning that those expectations often have very little to do with my reality. The more closely I looked at what I truly expect of myself, the more I realized that I'm... well, a bit insane.  There's no way that anyone, especially not someone with my physical challenges, could live up to my expectations, so I am gradually learning to be more realistic.  And here's the thing... there are times when I have changed my expectations to more accurately reflect what I'm capable of and when I do that, I experience a success and that actually boosts my self-esteem instead of eroding it. So when I remember, I try to create situations in which I can succeed and every time I do, I feel better about myself. I also try to remember that if someone was as hard on a good friend of mine as I am on myself, I would get very much in their face and tell them not to be mean to the person I love. The question is - why would we defend someone we love, while being incredibly mean to ourselves? It's taken a long time for me to remember that I'm not allowed to be mean to myself, but it's helping. Try it someday.  And until you can, please allow me to tell you that I care about how you are and I will defend you when you're mean to yourself.

THANK YOU SO MUCH,LENA!

Yo're very welcome.

There are times when everything just gets dumped on you all at once and whether it's fate, coincidence or the universe deciding that you need extra exercise, I have no idea. At those times, there is nothing for it and you just have to use up your spoons dealing with it.

I will say this, though. There's nothing like emergencies to convince you that everything is an emergency and you have no options. Personally, I'm getting better at trying to remember to take a step back and do some thinking about whatever the latest crisis is. Sometimes, there's nothing for it and you just have to go do it, but when I try to get that little bit of distance and perspective, I sometimes find that it's perhaps not quite so much an emergency, that I may be able to delegate or at least ask others for help, which in the long run, reduces how many spoons you spend on any given situation. It can be difficult, though, in the middle of a crisis to remember to take a deep breath and sit back and look at things objectively - often it feels like there isn't time for that, but in my experience, even if you end up having to do everything, getting that bit of distance and perspective means you're not acting in haste. You have time to plan out your response. It works for me (whenever I remember to do it) and sometimes, I think that situations like that are there to teach me not just to accept it, but to think before I act. To use your words, maybe it's fate reminding me that I need to learn not to do everything myself.

Thanks a lot. Your post really made me think that why I have to take on every emergencies by the horn myself when there are healthier people around to do so.

People around  have got used to my handling emergencies so much that they forget that I have a chronic condition. I on my part feel too proud to let them down. You do sound a bit like one of my sisters who keeps telling me that I should put my pride down and use my RA as an excuse  for not being a frontline person for all emergencies. That way I help myself and do not "burn the candle at both ends".
This is a very good piece of suggestion and I think many people who are stupid like me to run overdrafts on their spoons will learn to save them.

Ratnapriya

oh, I'm one of the "stupid" ones - I've spent the last week not being able to do much of anything because I'd done too much, so it's not like I live this lesson every day. But I am getting better at it.  One of the key factors for me to get better at taking care of myself was when I realized that saying I couldn't do something me feel like I was using my RA as an excuse. It kicked into my pride, into the place in me where it feels I have to prove I'm just as good as everybody else (or better) and that RA won't stop me from anything. On these days, I try to remember that sometimes it's a good thing if the RA stops me, because there are things worth hurting over and then there are things that aren't. And sometimes - get this - I'm not even the appropriate person to solve the problem. Just because I can, doesn't mean I should, if you know what I mean?

maybe we can help remind each other of those every now and again.

You know, I applied your suggestion only this weekend. I went to my sister-in -law's place. Previously I would rush to the kitchen to give a hand when there were enough people to take care of things. The result was, I would soon find myself doing a big portion of the cooking ( I like cooking !!!) while other able bodied people just sat around and chatted.

This weekend I sat around chatting and allowed the hosts to do the cooking themselves. Maybe everybody was surprised but this is one situation where I can afford to save my spoons and I could do  it.

Ratnapriya

Way to go!  I'm so glad to hear that you gave it a whirl and that it worked well for you!

Wow, you really have had a hard time of it. I'm glad that this post could help - is nothing like realizing you're not alone, that many other people out there feel exactly the way you do. Having company helps.

You may also want to check out the post I wrote on dealing with the reactions of family and friends, as well as a post on working with RA that has links to a number of resources that may help you find a way to accommodate the tasks in your work and thereby make your job easier on you physically.  I can also highly recommend a book called The First Year with Rheumatoid Arthritis - a while back, I wrote a review of the book with an interview with it's author.

Hang in there.  it gets easier.