We all have it, we all know it like an old friend, just like our
pain. The disease itself produces anemia, the drugs we take also
have an impact. When my fatigue hits, its like a tsunami that
hits me and floods over me. I have no choice, I MUST REST.
I have found however, that balancing the day helps. It helps to
just be quiet for an hour. Sometimes I sleep, sometimes
not. I only manage about 5 hours continuous sleep a night (its
improved from 4) because of early wakening due to pain. My Rheumy
is finally addressing this because she says it makes painful symptoms
worse. I couldn't agree more.
So, my day includes an afternoon break, sometimes its a half-hour on
good days sometimes, its 3 hours on bad days. I get horizontal or go to
my recliner and try to be absolutely quiet...no TV, no music, just
quiet. I find I relish quiet. Sometimes when I have flares
its twice a day, late morning for an hour and then late afternoon
too. Flares usually mean I don't do much of anything that
day. My doggie loves when I take little naps with her.
Late afternoon is when I usually get the really bad fatigue, the
tsunami. When I wake or arise, I'm usually very stiff, my hands
are difficult to move, everything really is difficult to move.
But I do move and that is when I take my pain meds, etc. Then I
can put dinner on the table.
Do any of you have any tips for managing fatigue? I find that
sometimes certain tasks will worsen it. I positively dread going
to the grocery store, it wipes me out completely, sometimes even the
next day. Even doing things I enjoy have to be limited because I
get tired.
Hi Vtmtngirl,
I think you're doing exactly what you need to be doing. Like you my afternoon breaks are criticial. Sometimes on a really bad day, and some of this is just depression, I'll do nothing but watch TV. I get into these quirky moods where I want to isolate and watch Life Time movies all day, arggggg. . . . I'm blessed that my job hours are flexible and I can do this. I would not reccomend this to anyone, because it's not healty, but it's my way of dealing. My diagnosis was prompted due to my exhaustion and flu like feelings all the time. It really effected my view of life. It's like looking at the world through an unfocused camera lens. Everything is distorted, my emotional, mental and spiritual views get horribly screwed up. There's high frustration because my energy level is zero, so it becomes this circle of despair. Everything is an effort, and sometimes it's just easier to do nothing, which causes guilt and frustration, and eventually depression. I work very hard at keeping a positive attitude. To not give in to the negative feelings. I don't know that there are any easy answers for any of us, but allowing your body the rest it needs, eating the right foods, getting excercise, even walking, if your body allows, being around positive and encouraging people, getting in to things that make you laugh, a funny movie or book, talking on this board. All the little things help. Support is a huge part of dealing with this. Sometimes just knowing you're not alone can ease the journey. I have found great comfort in being a part of this discussion group. I think each of our journey's are different, how we got to this place, how we dealt with this diagnosis, the choices we make in addressing it or not, but we all have one common thread, it affects our lives and the lives of those around us tremendously. Know that you're not alone, you have people around you who understand and will help in any way they can, myself included. I'll be praying for all of us!
An exact mirror to your words here....I do exactly that. With this weather shift going on I typically sleep 2 to 3 hours of the afternoon.The dog snuggles up to me and even sometimes my daughter will nap after school with me rather in her room.
The fatigue lately has been horrendous, but it is my reality, so I deal with it. Thankfully my mother or daughter will take over when this happens. Grocery shopping..........the pits, hate it always have but now my sis will help me out with it when needed which is one reason why I moved here. She picks up the slack for me and I do the same for her.
Since my mother is unable to do many things now, we manage a routine which lessens the load. Soon this weather shift will be over and we can get back to more our "normal", hopefully anyway.
Sometime RA wins...the rest of the time I can hold my own.
I have not even had the energy to cook a meal. Pretty bad. Lots of storms. I hope that is the reason and not depression. I have laid around for three days now. I may return to work April 15. It might be good for me ? I read a study about how people have a body clock and even healthy people have parts of their schedule where they poop out. I have always been tired in the afternoons. Now it is times 1,000.Boy it's so good to hear from others who are going through the same thing. The fatigue I think is the biggest problem. I have been lucky enough to schedule my teaching hours before lunch when I have some energy.I market only once for the week. I try to make a few dishes that I can serve twice. Whatever we have for dinner is lunch for the next work day. I usually put leftovers in those microwavable dishes in the freezer. We eat take out twice a week picking up one meal at the local farmer's market.Dinner can be really simple like a soup and salad or sandwich. It's really no more expensive than supermarket stuff if you're willing to eat simple things.
My big splurge is having a cleaning service once a week. I figure If I'm suffering through a full time job, I owe it to myself. They come Friday morning so when I come home after work, the house is clean.
You know.. this is one of the main reasons I joined this forum. Information, and knowing that I was not alone.
I too do the coffee, motrin or vicodin thing. I am always afraid if I lay I won't get back up. I don't give in too easily either. In fact I do believe that I am still in denial (of what I can do compared to what I used to do). I get upset, cry, rant and rave. I am sure that my pets think that I am nuts. But, they sit at my feet and giving me the loving, caring, eyes and I get up and find a treat for them. I know that if it weren't for my pets I know that I wouldn't push myself sometimes to get out of the bed or the chair.
Thank you all once again for reminding us all (mainly me) that we aren't alone and we do share similar experiences, pains, and emotions.
About fatigue, I can totally relate. I like the term "tsunami" it comes on so quickly sometimes. Lately, I am just dead from 2 pm - 5 pm. I've never watched daytime TV in my life before now... but the pain is so bad I can barely concentrate on reading or anything mildly constructive. Scrapbooking and artistic passions are painful so I find myself watching Martha, Oprah et. al. I didn't realize I was "crashing" until the last week, when laying on the couch seemed to be the only option. I swear, I've never done that in my life.
I also itch to keep up to my old ways. Climbing the stairs to use the computer doesn't interest me the way it used to. When I lay down, my head spins about what I could/should be doing. I miss getting out, sewing, painting, etc. etc.
i guarente you will have a good sleep without pain from the moment you start use this product. and you will not wake up because pain.
i means from the moment you start use. that is how quick it will be.
and i means guarente.
I'm with you!! I keep my morning medicine on the dresser with a glass of water so I can take them at least a half hour before I actually get up. I find this makes it a little easier to actually start moving in the morning. I have come to the conclusion that housework is going to have to be broken up into small chores each day. I did it all on Friday and still haven't fully recovered from it yet. It would be nice if our employers would allow us a 15-20 minute nap each day. I sure miss them on the days I have a 9 hour shift to work. I'm glad that I'm not alone with this you all have been a great support system for me and allowing me to see you all are going through the same things as I am.
with this product you will not have problem wake up in the morningI too was an overachiever workaholic. I have learned to slow down the hard way, but I will be happy if I can get back half my mobility I once had.First of all I have to say a great big "Duh" because I totally missed the Tsunami analogy in the first post! I didnt get it untill the later explaination...then I was like "Ohh, yeahhh...it does do that!" So I have to publicly call myself out on that---I missed that one!
I wish that meditation and quiet were options for me. With my kids around the best I can hope for is the distant melody of a Play Station 2 game coming from the boys room and the muffled sounds of daughter in her room singing along to Kids Bop! I think that is why I take so long in the shower though, it is the only time that everyone leaves me alone! It wasnt always that way---the kids used to come on into the bathroom and "draw" in the steam on the mirror while I showered. I finally had to end that, too many grubby fingerprints everywhere! At least I can go the bathroom without an audience now too. Once they werent toddlers I started locking them out. For about a year or so my son would slide Hot Wheels or little rubber frogs under the door---I guess just in case I got bored sitting there.Good luck, just a suggestion.
VTmtngirl, Just picking up on one point from your original post: have you tried a slow release pain med. Here in the UK we have one which is 'Tramadol HCL (Zydol) SR' and I have been taking 1 x 100mg tablet every night for ages and it makes the pain more bearable in the morning. I don't know some of the meds you all use in the US and it may well be that you already use something like this under a different name, but give it a try if not doing so already.
And to those without insurance here, my heart goes out to each and everyone of you. It is inexcusible and intolerable to think anyone in this country goes without the proper health care they need. It upsets me no end.
Crunchy, my daughter is 7 and I really relate. She went camping
with my brother for 3 days this weekend and it was so peaceful and
quiet. But by the time she came home, I was so happy to have her
buzzing around the house again. She needed a break from me mostly
I think.
Since I have been sick these last 3 months, she has become so helpful
and so responsible, and I just am in awe of what a good kid she
is. She does so many things for me without me even asking
now. I keep thinking, I hope this lasts! I also want her to
still be a kid and enjoy her youth. But she definitely does
more for herself now, but ironically she likes feeling like a big
kid. It has been great.
Sorry to go so far off topic.
edit: and VT -- I am one of those without insurance. I am
awaiting the damage today at the doctor. I am going to pay
cash. I know how much I can afford is going to totally impact my
medication situation. I get angry too, but I am greatful to have
the money at this point to even pay. I know a lot of people here
in AZ go to Mexico for their scrips. That could be me. It
is legal if you have a prescription.
Also, if I didn't work or work as much, I could qualify for state
insurance, but alas I make too much money, which isn't much. If
you make more than 19,000 and something in a 2 person household you
don't qualify. Can you believe that?!
My friend, whose husband has cancer, said his insurance company will
pay for hospitalization and surgery, but not for medicine anymore. He
takes one pill 4 times a day, & it's per pill. I think his medicines will
cost ,000 this year!!
How can that be? How much do you all pay for Remicade & Enbrel? My
aunt is on Remicade, & she has to pay 0 every other month.It is frustrating, the expense of these medications. I have insurance and still spend alot of money on medicine and office visits for the co-pays, plus the 0 per month it costs for the ins. premium. I try to buy over the counter meds in place of perscription when possible, like the Folic Acid for a 30 day supply RX, .49 for 100 days supply OTC. Ibuprofen and asa work just as well for me as a perscription NSAID but for less than half the cost. Any little bit of $ saved helps, plus it is less hassle to buy it when you need it and not depend on the doctor writing a scrip or the pharmacy being open etc.I wish ASA and NSAIDs worked for me...they do absolutely NOTHING for my pain,zero.
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