View Full Version : How to find meaning in your life when you're always tired
07-05-2007, 12:06 PM
I am a new member. I am a 43 year old mom of 3 and former professional. Though I've had lupus since age 14, I've never really known anyone else with it. I'm having a hard time handling the energy crises. I stopped working 7 years ago and am realizing that I'll probably never go back. I need some other focus for my life besides my school age kids. What do you do when you're always depleted? How do folks spend their days? I'm tired of just resting in between phone calls and errands. Then I wait for my kids to come home from school. How do you find meaning in your life?
07-06-2007, 10:53 AM
Welcome to the Forum! :D I'm really glad that you found us! :D
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I can understand just how debilitating the fatigue actually is because I am sixteen years old and will be seventeen in September and therefore have to try and cope with schoolwork, extra-curricular activities, doctors' appointments, medication, illness and of course, the fatigue. :(
Have you ever tried a High Potency Vitamin B Complex Supplement? I find that Vitamin B helps tremendously with fatigue, but it does take a while to work and one MUST take it everyday without missing a day. I also find Procydin to be particularly helpful.
I hope that this helps!
I will keep you and your family in my thoughts and prayers...
Keep well and God bless! :)
07-06-2007, 11:30 AM
Have you thought about volunteering at your children's school? The school where I teach is always looking for parents to help out. One of the important jobs that is not strenuous is to call the parents of students who are absent. This is how we catch those truants! Perhaps you could do a job such as this one for a couple of hours, and feel great about helping out at the school.
07-06-2007, 04:20 PM
I totally understand the fatigue! I have 4 kids and it's really difficult to get past that fatigue sometimes.
When my kids were smaller I trained them to get up in the morning and make their own lunches for school and get their own breakfast and clean up after themselves. This helped me out tremendously when I had flares. I would always supervise but I didn't actually have to do anything for them but give them a kiss goodbye before the got on the bus. (that was the important part!)
As for finding meaning to you life.... If you have kids, you have meaning and a purpose. Your kids need you to be there for them even if you have no energy or your sick. That is the biggest meaning.
For personal meaning maybe try getting a hobby that doesn't take to much out of you. Try knitting or crocheting, flower arranging, sewing, any number of things. I took up sewing myself. It turned into a full fledged business for me and I can work out of my home and still be there for the kids. Plus, I set my own hours so if there is a day where I'm just not feeling well I can take the day off and rest.
07-06-2007, 04:30 PM
or jumpin out of airplanes?????? :lol:
07-07-2007, 12:19 PM
Oh the fatigue! Some days it is all I can do to make it to work and through the day.
I regenerate in many ways - exercise actually helps - GENTLE exercise, no marathons will be run! Walking, light weights, etc. Vitamins do help some, as does eating right (low fat, high veggie, no meat except for fish)
Take time - sit and look at your garden. Watch the kids play. Maybe initiate a "reading time" a couple times a week where you read a story aloud to each other. Literally stop and smell the roses - or whatever's blooming at the moment. Smile as the weeds grow - they can be pretty too.
I've changed my life a lot - I live slower now. I've learned to appreciate that, mostly.
Hugs and strength, dear.
07-07-2007, 01:14 PM
or jumpin out of airplanes?????? :lol:
Yup, Jumping out of airplanes puts thing into perspective and makes the whole world right again. When your in freefall you have no worries and no pain and the best view of the whole wide world right there in front of your eyes. When you land it takes a long time to wipe the big silly grin off your face. :D
07-08-2007, 06:35 AM
Finding fulfilment, to fill an entire day can be depressing especially when ill. I hear you loud and clear. I don't have children, my husband travels so I have learned to get creative at changing up my lifestyle as I had to do it so many times.
Are you a single Mom? I am 46. I do not work either. I "retired" 8 years ago. Took my 401K, trust fund and flew. After undergoing 2 back surgeries, failed and then unknown to me Lupus started to tracking me down. I wandered aimlessly in my mind, on earth...going from wishing there were 36 hours in day to gosh, this day isn't over with, because it dragged on and on.
I still struggle some days, but as a whole I am learning to be fulfilled. I don't do volunteer work. I am afraid I might let people down, unable to fulfill a commitment but eventually I would like to. Find my little niche.
What are the things you use to do, like to do and/or invision doing and maybe I can help to find ways to modify them so you can still enjoy them. Do tell. Small or big things....? Things you enjoyed before you were a Mom? Things you wanted to do, but never had the time before so the thought, the desire went to the wayside...any of those?
And then maybe we can create a schedule where you can accomodate naps, exercise..mild of course, house work, children and etc and still feel a sense of well being.
I can suggest ways to take shortcuts to lighten the load, to minimize your fatigue.....as in cooking, laundry, maintaining a house, make-up, hair to leave more time for enjoyment. I've learned to be very efficient. Conserving energy...
Things I like...Pilates, read, sew, paint, draw, cook, gardening, photography.
Example I used to love tending to a huge outdoor flowering garden at my previous homes. Now, I do more potted plants, patio gardens. Cooking, not a chef, just a self taught cook. I used to do gourmet dinners, guests now I challenge myself to make easier meals with the same great taste for my husband and share with the neighbors. I buy things already chopped, peel and etc. Used to do aerobics, but now I do Pilates. I'd sewed quilts, now I scaled it down to pillows and patch jobs. I read...autobiographies..lately I have been reading about various beliefs. Buddhism, Islam, Christianity and prophets. Nostradamus.
Maybe once your fatigue is manageable maybe you can work from home. Travel agent? Medical transcriptor?
Are you taking any prescriped medicine or OTC? Plaquenil has helped me tremendously. I've modified my diet also and I believe that has helped with managing Lupus too. I can share what I do. I am here Cramer.
07-08-2007, 11:22 AM
Dear Oluwa and all of you wonderful Lupies out there who took the time to answer my post,
To answer your question, I am married (to a great man). He helps a ton. I also am lucky enough to have daily help with the house and kids. If I can't get up, things will function OK.
I used to be a physician. Its really hard to know that I'll never go back to that again. I tried to work part time for a few years, but even that got to be too much. A few times I got ready to go back, and then I was broadsided for a few months with a flare.
I do like art and writing. Maybe I could take an art class. A daytime class. I have always wanted to write a book. I even started a couple but never really got off the ground. I used to be a productive person. Not working makes me feel bad about myself. I like the idea of volunteering. I did go into my kids classes during the school year. Sometimes it took all the energy I had just to go-- then I was so glad I went. How do you know when to push yourself hoping you'll be fine, maybe even feel better? Or when to give in and cancell plans or skip exercising?
07-09-2007, 06:54 AM
For me, what dictates my day is usually how I feel about an hour after waking up and what I had done the day before. . My days are more predictable since being on Plaquenil things have definitely changed for the better.
But let me go back to pre-Plaquenil. Ugly days. I just forced myself and dragged through the ocassion. Many times feeling brain dead. Exhausted. Falll asleep during movies at home or at the theatre. Felt like I was walking in mud all day. I was depressed, feeling guilty for being "lazy". Lazy is a non Lupus person's word. For us and those who know, it means we are ill.
When I would have a "good" day, fatigue was at bay. Pain was moderate. I spent, and spent all my energy till I was exhausted, then for the following three days I was like an inanimate object set on a pillow. Physically and brain dead.
Or to a scale, balance... I would weigh out how I feel to what I plan to do. Somedays nothing, somedays go for a ride, somedays a load of laundry... and then somedays I couldn't even hold a book to read...
I think if a person is fatigued with pain, goes out and feels great and happy during and after an activity I would guess what was holding them back isn't just the fatigue but I would guess a whole lot of depression. My guess is everyone with Lupus has depression to a certain degree and with a whole lot of reasons to be.
Life changes, mourning who we were. Modifying ourselves. Yearning, wishing, wanting. Searching for constant stimuli, mentally and physically which use to come naturally. Seeking daily fulfillment. Productivity. Constantly adapting. It is a very emotional ride. Are you depressed? Are you being treated for depression, anxiety? I use to dose my anxieties with Xanax...but I hadn't had to use them for several weeks since being on Plaquenil.
Post Plaquenil. I feel marvelous as a whole. Not my old self though, but getting there. I still have fatigue, headaches but I have been on the anti-malarial for a bit over two months. With my results, so fast I expect to be even better in another month or two. That makes me so excited, excited that I well up with tears.
Since dosing with Plaquenil, I've painted rooms in my house, stained cabinets, workout minimal to a Pilates DVD. Stretch, stretch is the best advice I can give as a starter to feeling good.
I switch to an anti-inflammatory diet. No sugar, no preservatives at all. No red meats. No wheat or by products. Fresh, fresh. I supplement with 2000mg fish oil and a super B-complex.
I dose with Ultracet nightly to ensure a less pain morning. It works. I sleep great now. Prior up and down all night. Now 6-7 hours. I do get insomnia every once in awhile still. Like the average Joe does.
With the eat changes and the pills, I also believe by keeping my thoughts in a good place about my life has been doing wonders for me. Stay positive, plan for tomorrow regardless of Lupus. If, a Lupus symptom does show, well, we will just have to do the plan the next day or next week. I am all for living and trying. I was so tired of wishing, wanting and watching life go go by. I am taking when I can.
And do write that book...will you let us know when it is in print?
07-10-2007, 11:31 AM
Hi Oluwa and all,
I relate to walking around in mud. I am on Plaquenil too. I am also on Cellcept, Prednisone, and Rituxin in addition to 6 or 7 other meds. I know if I bump up the steroids I'll feel better. I resist doing that because of the side effects. I hate the wieght gain the most.
I've had lupus since I'm 14. Its been worsed since my 11 yr. old was born. I don't know why all the sudden I'm having this dilemna of what to do with my life. Maybe becaue my kids are getting older and don't need me as much.
Now that summer is here the tempo of life changes. The kids are at camp all day and get home even later than during the school year. To answer your question I think I am depressed.
Thanks again for the support.
07-11-2007, 12:10 PM
Taking anything for your depression? If not, have you consider it?
If washing a pill down with water isn't appealing perhaps doing the things you like, thought to do, or things we have suggested to help with it.
Do you interact socially outside the home or like some of us, social interaction is just to a medical appointment?
Check your junk mail for a brochure from the community college or high school that has a class for art, photgraphy, CPR and etc. Great place to meet people, get fresh air, a new perspective. Feed your mind, your senses...with people, books, the outdoors...or like me...I have a dog.
If you need a one on one, in person sound board, a family counselor perhaps.
What field were you in as a physician?
Hope today has brought good feelings to you.
07-26-2007, 07:13 AM
Thanks for the reply. Its so nice to log on and find a message.
I trained as a gastroenerologist, but only worked in that field for 6months. I worked in internal medicine, part time, for three years. I could only work a few hours at a time, and it got to be too expensive to carry my malpractice insurance. I also did one year in the ER. That was probably my favorite.
I read a post where someone said that B vitamins helped. I realized that I stoppped my vitamins around the time I started feeling worse, so I restarted them. A couple of days later, I started feeling better. Of course today is a not-so-good day. Why do those bad days just come out of no where?No energy to get up, achy--yuck. And I can't stop thinking of the things I have to do. Not enough energy for phone calls. Does anyone find phone calls exhausting?
Take care, all. :shock:
07-26-2007, 06:38 PM
Indeed the phone can be exhausting. Talking, listening all while holding the phone. Egads. Sad simple things such as that drains us.
I take a super complex Vitamin B. Is it working? At this juncture I am uncertain. Last month I would have said yes. This month...hummm...nope. Try it for atleast two months if you.
Vitamin B's the body requires them to function properly. We do not store vitamin B so we have to get them from the foods we eat or supplement. Deficiency results in a myraid of symptoms such as fatigue, insomnia, anemia, skin disorders, muscle pains, dizziness...and more. Older people usually are deficient, because of their diet. They eat so little usually or poorly.
Make sure it has all the B's. B1, B2, B3, B5, B6, B12, Biotin, Choline..I think I covered all the B's.
B12 is known for its anti-inflammatory properties. Check with your doctor to see if it is a good choice for you. Mine said yes yesterday though I have been supplementing with it for over 2 months.
Hope days ahead are better for you,