What are some things you all have found to keep your selves busy and mind active? It has only been 9 months since I was diagnosed I am already going crazy! I was so used to being busy and always on the go to now being laid up! And with this nasty flu I caught I am lucky to get out of bed its wiped out all my energy.
When people tell me they have so much to do or they are so busy. I always tell them be happy you can do those things even if its to much as one day it could just be taken away from you. I always thought I was bored at times and there's no boredom like the boredom I am experiencing now.
I have been where you are..... after my surgery I felt like a recluse, because my husband wouldn't let me out of the house whenever it was snowy or icy out for fear that I would fall and set my recovery back. I got so bored, you can only watch so much tv, and my depression worsened, I have my dog who is such a comfort to me, I would have gone crazy without her.
I think its a positive step for you to reach out to other members for advice and support....
I hear you. I'm glad I like TV. I rest/sleep 15 hours a day. It took me all day to take down my tree yesterday. I can only do a little at a time. I worked full time til I was 68. I retired and was so bored that I bot a small business that had consignment formal wear and I do bridal alterations. I didn't even work 25 hours a week. I had to give it up in august. I do a few alteration at home. I can sew for a short time and, what else, rest. I'm getting use to t, I might as well, it is was it is. When I was first diagnosed I had a "pity party" for about 2 days. Then I decided that wasn't going to get me anywhere. Then I discovered LWL .Thesupport here is great.
Have a good day.
If you would like you could take some online college courses. It would give you that sense of meeting deadlines, having that old “to do list” and feeling of accomplishment as well as keeping your mind sharp. Sudoku, word finds are challenging. I do a few of those and force myself into Zumba class 3 times a week.
I dont want to be pitied by anyone especially family members but I’m a huge advocate for dog ownership for us Lupus patients. They truly can give support and comfort like no other. Prayer and faith helps but a physical connection with a pet is supreme. I had a Golden Retriever who was therapy for me for the last 11 years. She helped me in every way but just recently died earlier this month and that by far is my greatest stressor. Not having her is a huge blow. I beg my husband for another one but he wants to wait a long period of time. I just asked him last night and he said no. In that time period I worked corporate high stress jobs and finally left in 2010 to open my own business where I can control how much I take on.
I’m sorry you have the flu. I believe we experience the flu on a different level then non-lupies. If you can tolerate, make some tea with ginger and rest while you can.
I'm sorry for the loss of your dog, and I agree with you about the pet connection. I used to have a fish on my desk at work. I like those Bettas with the beautiful colors and you don't have to have the air tanks and all the set ups. I would talk to it, and it of course would look at me like, "you crazy, woman?" but it was very comforting to me. My Boston Terrier is connected to me like no other dog has been. When I leave for work now, she goes to her crate and pretty much stays there all day until I come home. My husband says she will come out when he eats ham or something she really likes, but goes back to her crate. Right now, she is asleep under my desk in her little bed, beside my feet.
If you would like you could take some online college courses. It would give you that sense of meeting deadlines, having that old "to do list" and feeling of accomplishment as well as keeping your mind sharp. Sudoku, word finds are challenging. I do a few of those and force myself into Zumba class 3 times a week.
I dont want to be pitied by anyone especially family members but I'm a huge advocate for dog ownership for us Lupus patients. They truly can give support and comfort like no other. Prayer and faith helps but a physical connection with a pet is supreme. I had a Golden Retriever who was therapy for me for the last 11 years. She helped me in every way but just recently died earlier this month and that by far is my greatest stressor. Not having her is a huge blow. I beg my husband for another one but he wants to wait a long period of time. I just asked him last night and he said no. In that time period I worked corporate high stress jobs and finally left in 2010 to open my own business where I can control how much I take on.
I'm sorry you have the flu. I believe we experience the flu on a different level then non-lupies. If you can tolerate, make some tea with ginger and rest while you can.
Hi Louters! I think Donna's idea of online course is really good considering you can't be on campus right now. I don't know that where you are living allows pets and a dog might be too much for you to handle right now but I agree about dogs being the greatest companions. What about a cat or a little bird. We had several parakeets years ago that we allowed out at times and were very friendly and fun. As far as doing things.....I am so much older so our interests probably are not the same. Have you ever done "counted cross stitch"? You could start that and maybe take a class at a store to get started. There are beautiful samplers that you could have on your apartment walls or make as gifts. I am into quilting and there are wonderful mini quilts you could do and also hang on walls. There are sewing machines that are well made and cheap. Research for a decent machine. I bought a Janome (good company)for my young granddaughter for 50.00 that are used in shops for classes sometimes. Knitting is very popular right now with all age groups. Dig into your creative mind to see what might appeal to you. Everyone has a creative side but sometimes finding it is difficult when you are forced to do it. You know everyone here is rooting for you. Gentle hugs, Rita
Hi!, tat's good advice, where were you 3 years ago when i needed to hear those words- smile Well for my at first my granddaughter had every coloring book we could think of in the bed , and she always wanted to sleep in my bed just in case noone heard me asking for help to the bathroom during the nite , she would wake up if she heard me calling for someone but she was in kindergarten and was doing good in school , so i got a cell phone to call one of the other family memebers in the house, that worked out good for awhile , puzzle books , books to read , the Bible (?), paper , pen, stamps, envelopes-write people that you have out f town, most of all SLEEPS!!!!!....Beverly L.
I play online Bingo. My body can rest and my mine stays busy. It has helped me a lot !! ( I use my phone )
Trisha, I like the Betta fish too. Use to have them. Enjoy and cherish your fur baby. They are such a gift of companionship, love and support!!!
Read the book “How To Be Sick” by Toni Bernhard! She has severe chronic fatigue syndrome (which basically doesn’t have any treatments to control or reduce it like we are lucky to have!) Since she went from being a law professor and avid meditation retreat-goer but now spends the majority of her time in bed, the book confronts this issue head-on. She does so by discussing how she has applied her Buddhist/meditation practice to the illness and bedridden state itself, going into it rather than remaining stuck on the externals she longs for. And she also acknowledges just how much pain and longing there is…
It’s totally not necessary to be into meditation to enjoy and benefit from the book. It is simply her context for understanding, but it could apply easily to a more Christian basis or simply a thought-process regarding the disease and your sense of self within it. A must-read, and amazingly thorough although it’s brief (great because you can read the whole thing without being totally exhausted!)
Once you have a successful mind-frame regarding your illness and role within it, it should be much simpler to find how you wish to fulfill your existence, or at least remain comfortable despite the emptiness and desperation illness and loss a former life naturally is. Happy reading
I find working crossword puzzles and jigsaw puzzles help keep my mind off of my chronic pain and inability to do the things I use to do. My husband joins me and we have fun doing this. I also watch shows I enjoy on TV and On Demand. When all else fails, I call my sister and cry on her shoulder. She is a real comfort. Good luck finding what you can do. You will be in our prayers.
There are some great ideas here for you. I have 2 small dogs and 3 cats that keep me very busy, but they are the most loving animals. They seem to know when I need comfort and have helped me through the dark days. I also read a lot mostly mysteries and dog stories. There are also so many things you can do online from art to mind games. I also do as many yoga poses as I can and meditate. As I feel better I add a few exercises.
I hope you feel better soon, it took me about 10 months to feel a bit better!
Thanks all! I want to continue my education as it is something I have always strived for. I am looking at taking a few online classes. I really wanted to go to campus but I am not physically ready, and I still have too many doctor appointments. A dog is something I would LOVE to have!! We had a black lab but when I got sick and spent 5 wks in the hospital we had to give her away.She had been with us for 11 yrs. I miss the companion ship so much! I can have a dog in my place and would love to have another one, but I dont know how I will take it out as I am still wheel chair dependent at times. There not sure on the cause but when I "flare" really bad I can hardly walk and my whole right side gives out. Which makes it difficult to feed and do basic cares for myself. So I had been looking into a service dog, but not sure if its something I could get. I also have seizures so I don't know if that would help me in getting one or not. One of the things I would love to start is making clothes for children. Skirts, bow ties, hair bows etc. and sell them and start my own little chain. Hopes! :)
There are therapy dogs who alert before a seizure comes. That would really help you.
Louters, hope you feel ebetter soon. in rough patch myself, so understand the cabin fever.
things to do:
~ hand made crafts or art - knitting painting, making gifts for down the road.
~ write real old fashioned note cards and send to friends and family - lovel y surprise to have more that bills in the mail.
~ order a few books online and have shipped right to your door, spend time escaping into wonderful adventures learning about other cultures, or learn a skill you are interested in with your reading.
~ take an online class
~ do what brings you joy - like an indoor herb garden you can cook with, have a friend over for tea and a light snack, give yourself a facial steam and exfoliate or other pampering things just for you, bundle up and sit outside on a porch or balcony and watch what goes on around you.
hope this makes sense, highly medicated from day in the ER. will post you more when able.
I was diagnosed with sle in March as well and myself been wondering the same thing lol!! I agree with reading too, I decided to dust my books that I've collected over the years that I was too busy to read over the years until lupus introduced itself to me. Also, read more of lupus info and get you a journal, to relief stress and keep track of what you eat and flare ups then so forth.
I'm not able to take online classes due to light from computer, it breaks me out with hives, jaw and lips swelling, can't ty[e longer than 10 mins or my hands will swell as well...
Sewing is a great idea.....I have enjoyed sewing my entire life.......if I didn't have my sewing and quilting to keep me busy, I would go crazy !
And sewing and making items and accessories to sell would be great.....I had my own sewing business several years ago....I made aprons and my daughter made Bible and book covers for shops in Gatlinburg, and a friend and I designed and made pet clothes to sell to pet shops and stores all over the state......all this was before the internet...things should be much easier now...............
I will be praying for your success in this venture :)
BLESSINGS and PRAYERS
Hi!, good luck !!!! hope things work out for you ,m that was something that i wanted to do but my son reminded me , Mom somedays you don't want to get out of bed , all i do is sleep and then other days am in pain and don't want no noise, and then other days my mind forgets or am all over the place with rushing thoughts and can't remember things , etc. , so i said forget it ! i would be giving away time and not to think about having to pay back student loans that i really didn't use . But that is not to throw a wrench in your plans , just take some small class that consist of weeks or months!!! Best wishes to you .Happy New Year.....Beverly L.
I was struggling at first why go back to school if I wont ever be able to work. But, I decided that its still the beginning and there is a possibility to do better, so I decided to continue my plans. I am on the route of becoming and Early Childhood and Elementary teacher. My new goal now is to work with children with disabilities. Having my own issues makes me want to do it more. My aunt tutors 2-3 days a week for children with autism. I just love kids and they bring so much joy to my days. I used to nanny and boy do I miss those days. I wish i could just borrow someones kids! :) I want to find ways I can volunteer in the schools and such. I guess they have a reading program at our local library and I could go and read to the children. Something I am going to look into. But first they need to get a better control on my meds and treatment. i have 4 different doctors all saying something different and not agreeing on the proper treatment.
I totally know what you mean...so bored. Coming here as a moderator helps. Thankfully the holidays kept me busy. Now bored again, but getting ready for a vacation...yes, I know the irony in that statement. But I read on my Kindle, lots of free books, do art projects, etc. I do word puzzles but mostly because I don't want to lose more brain function. I tried luminosity, but I am just brain dead at this point and trying to get it back up to what it was.
Find your passion, try something new that you have wanted to try, look at some of the groups on this site (there are terrific ones).
I know we all find ourselves bored at some point. I have always worked until just recently so it's like being a ship lost at sea.
Always know that there are people here. Even though we are all in the same boat and all can't be on here at the same time, I have yet to see anyone ignored or a question go unanswered. This tells me we are all connected and all feel the same things.
Keep your chin up and know that you are not alone.