How to find meaning in your life when you're always tired
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?
Welcome to the Forum! I'm really glad that you found us!
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!
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.
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.
or jumpin out of airplanes?????? :lol:
Fair Oaks California
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.
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.
Originally Posted by TERIOD
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.
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?
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?