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Managing Everyday Fatigue: How to Live with It; How to Prepare for It
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Christine Miserandino posted:
I must admit that today I am genuinely too tired to write this post. Oh, how I hate it -- "tired." Somehow, that word can't possibly begin to describe the complete exhaustion and fatigue I battle on an almost daily basis.

Right now, I feel like I can probably fall asleep, and it is only the middle of the day! It is a frustrating feeling. Many times, even if I do take a nap, I do not wake up feeling refreshed or rested. This is a very difficult concept to explain to people who are not living with lupus. I can't spend my life in bed, even though on some days, it's tempting to continue sleeping.

I have two different kinds of days: "Couch days" and "Life days." Sometimes, I can live my life normally with no major adjustments. But then there are the days when I am "living life from the couch." Don't get me wrong -- even on so-called "normal" days, I am not going to run a marathon or anything like that. But I am not stuck in bed, and that is always a plus in my book.

On my "normal" days, I try to do the essentials like laundry, errands, and doctor appointments. I might even cook an extra meal and freeze it. I have learned the boundary between doing too much and doing that bit extra that might help me later when a bad day comes along. Even on good days, I have learned to pace myself. On those days, working a nap or downtime into the schedule is still an essential for me.

On days where I am living life from the couch, I have learned little tricks that have helped me remain functional and happy, too. First and foremost, I have tried to let go of the guilt, stress and anxiety. These are horrible emotions for anyone to experience, especially those of us living with lupus. If I am having a couch day, I am not being lazy. I have lupus and I am actually being responsible by taking care of myself. (Some days I need to repeat this to myself over and over -- like a mantra.)

Once I am comfortable on the couch in loose clothes or pajamas, I make sure I have everything around me. I will place the TV remote, my phone, my laptop, tissues, fuzzy socks, a blanket and anything else I might need within reach. I have learned to leave snacks and drinks and other essentials close at hand in case I need something to eat. I have movies to watch with my daughter so she is entertained on these days. Couch days may be the days I order food in, ask for help, or even have cereal for dinner! By now, I know how to quickly make the couch my home base.

What tips do you have to share for getting through the "couch" days and the normal days? What strategies do you use to get the rest you need on both types of days?
- Christine Miserandino
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shannielee74 responded:
Wow! Reading this made me feel so 'normal'! I have days that combine the couch and life days. Some mornings are really rough, but by mid-afternoon I can function somewhat normally. Because of this, I am glad I have a job where I work in the afternoon and evening. It makes it so I can work most of the time. However, some 'couch' days still become work days if I can just sit at my desk and not run around. Thankfully my coworkers are very understanding.....which makes sense as I work in a hospital.
I've learned to just let myself sleep when my body says to sleep. I take power naps at work when needed. I print off maps for directions when traveling so whomever is driving knows where to go without me playing navigator (my favorite job on trips).
My kids know when they find me asleep to let me sleep unless it is important. In fact, we have a list of what is important and what isn't so they know when to wake up mom. I'm glad my kids are all older (the youngest nearly 10yo). That helps a lot.
Mostly I just listen to my body and do what it says.
Shannielee74 ~~~Life is what happens when your busy making other plans...John Lennon~~~
 
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RJANU responded:
Hi, I am new to the community, though I have had lupus for 14 years. Dealing with the fatigue of lupus and fibromyalgia can
certainly be a challenge. Over the last several months I feel as tired as I did in the beginning. One of my expressions is, I am on my bed not in my bed. I'm not sleeping but I have no energy. I have a small loveseat in my bedroom and when my kids were younger they and their friends would come sit and visit with me. They are now in their early twenties and their friends still reminise with me about the deep chats we had. I try to make myself accessable even if I am not coming out of my room.

It is hard not to feel guilty about those days ,but I tell myself I can have a down day or two or push it and have a bad week.
Like you there are cereal days, pizza days etc. It is hard not to feel lazy if you were a task oriented person pre lupus. It seems like many of us were. I used to gage my days by how much I accomplished. I have learned to accept if I achieve one or two goals I should be happy, and not stress over what I did not do.
I am also much more tolerant about mess. It is not the end of the world. I had a very hard time admitting I needed help with house work, but getting help with vacuuming and bathrooms has been a great relief both physically and mentally since I am not stressing about it.

One thing I have done for a long time is use a cane in the mall or anywhere that requires walking for a while. The reason is it paces me so I am not walking faster than I should and wearing myself out sooner. Also I have some balance problems and it helps that, and since I walk relatively slow, people are more aware and walk around me. Unless it is a holiday then all bets are off. My daughter may have been a little embarassed at first until I was able to use it to reach up and take down clothes she wanted to try on.

Which brings me to the most important thing, HUMOR. We have had a lot of good laughs about my lupie days. In the beginning when I would be taking them somewhere we would get out of our neighborhood and I would hesitate and ask where were we going? We had just moved to Maryland and I had index cards with directions to the grocery store, friends houses and such. But sometimes I would still forget what we had set out to do. I would just laugh and say oh yeah, yeah, yeah. Seriously I am a big" post it" person to keep on track.

My mantraI is minute by minute, hour by hour day by day.
A bad morning that does not necessarily mean my whole day is shot. There are plenty of times when it is one or two o'clock and I am finally getting into gear, up showered dressed, but I
am up!
 
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Margareth8537 responded:
Christine
I think you have offered tips, rather than needing them!

Because we talk about being 'tired' it doesn't relly give the right picture, does it. That numbing fatigue that seems to prevent the muscles moving, eyes staying open and mouth and tongue making connections with the brain!

I can't remember a day when I have felt 'well' for a long time now, but most of my days aren't too bad. I can get through most of them, and it is only ocasionally that I just can't make it up. It is a case of not being too pernickety about things - my sight is poor, so I don't actually see the dust. Can't get takeaway where we live, but keep frozen soup and eggs are always useful.

As you and the others who have replied say, the main thing is to accept that it is not your fault and not feel guilty about not doing things.

I hope for many normal days for you

Margaret
 
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meliasue responded:
I have RA so I understand too well what "tired" means. It's not just a little sleepy, it's a complete lack of energy where having a conversation with someone can wear you out. It is certainly not fun.

I'm so glad you do what you do.
 
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gladpack7 responded:
Dear Christine--I hope you feel better...it's the weekend! I am reaching out to you--and hopefully the Lupus community. I just watched three of your videos--they are excellent. The one on meds made me think that you need to know about MyMedSchedule.com. I work for them--so full disclosure--but it is great to get very organized--it's free--and is web-based so it is very easy to update. You can print in spanish or english...and do refill reminders and text message reminders. You will be doing yourdelf a favor--and others that you work with to check it out. I always feel as if I am giving someone a gift when I tell them about the program. Please let me know what you think...is there anything that's not there that would be helpful to the Lupus community. Your meds should all be there--but let me know if one is missing. donnab@medactionplan.com
 
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ilikeducks responded:
I'm new to the community too. I'm 16 years old and I have had JRA for a couple of years. The fatigue is the worst part. None of my friends understand why I'm so tired all the time. I could sleep alllllll day. It sucks sooo much. I started physical therapy about 6 months ago and I did that for a few months. I started feeling better, and I wanted to do more. So I started doing weights in my basement. Shortly after I started that, summer started and my arthritis subsided (it's always inactive during the summer). But a week ago it came back, which makes me mad because summer is only halfway over. Now I have to deal with this stupid fatigue all the time again and its making it really hard to do weights. Hopefully I can keep it up.
 
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Elizabeth_WebMD_Staff replied to ilikeducks's response:
Welcome to the community ilikeducks!

Sorry to hear the arthritis is back Good to know the physical therapy helps and my wish for you is to have enough energy to continue with the weights!

Keep us posted on how you are feeling,
Elizabeth

PS - In case you have not seen it, we also have a Rheumatoid Arthritis Community .
 
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Christine Miserandino replied to Elizabeth_WebMD_Staff's response:
HI Everyone,

Today happens to be a fatigue kinda day for me. I am so tired. I hate that word tired... it doesn't seem to quite explain how I feel. But since I am speaking to you girls "in the lupus club" here at webmd I feel like I can talk open and honestly. So do you know what I am doing today? I am giving myself the day off. I think I will make it a national "off" holiday. No rules. No to do lists. No need to make excuses for your lupus. You need rest, it's simple- rest. You need to take a nap, well put on those jammies and take a nap. No guilt.

One of the most important ways to take care of yourself no matter what the health issues you have, is to listen to your body without adding guilt to the mix.

So listen to your body, if you need rest, rest. Take it easy on yourself cut that to do list down to just what is essential. But most important... NO guilt and NO excuses!

Until next time... Spoons and Love,
Christine
 
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tjanderson replied to shannielee74's response:
Hi ,Im Tina 49 And I have Lupus. Here lately its been pretty bad,i keep colds,i stay tired and have very little engery.My Dr.has put me on one med after another.I get some relief but the its on to something different.I have my daughter for support,and family and friends that try to understand.Its hard at times to not feel sorry for my self but then I look around and relieze there are people ,kids going thur much more than myself......So ALL I CAN SAY IS IM TINA AND I HAVE LUPUS...
 
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1stLadyDi replied to tjanderson's response:
I am with you & can empathetize. Thank God for daughters. Out of all of my family, she, at 21, understands & supports me the best, especially as far as compassion & assistance in the home as well as encouragement.


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