Hi all...I know I have tested negative through blood work, but I know that something is still off in my body. Wanted to reach out to the community to get advice on how to deal with terrible tiredness after doing any kind of activity. I try to work it so I can rest or nap before dinner because cooking is arduous for me. But, being I am a mom of two teenage daughters I volunteered to pick two of their friends up and take a trip east to a bird sanctuary. All in all, it was 3-4 hrs. By the time I got back and dropped everyone off I was exhausted. My food wasn't deforested and ended up making a crappy pasta dish. My daughter who already had lymes at 2 years old found a tick on her, and I lost it. What's the best way to save some of my spoons for dinner? I don't seem to have any left by then. I guess I could cook earlier, but I hate cooking to begin with. I know this sounds like a silly request. Just wondering what everyone else does to cope. Thank you for listening.
Out of spoons by end of day: Hi all...I know I have... - LUPUS UK
Out of spoons by end of day
Dear Natura, you are having a battle with this Lupus. It's so frustrating when all we want to do are ' Normal things' if had had spoons to give I'd give you some.
The only thing I can suggest about meal time is to choose something you can make much earlier in the day and re heat it at dinner time. you could of course use a slow cooker make the food early and leave it to slow Cook.
Hope you find something that works for you. Xx
I'd definitely suggest a slow cooker I make curries stews soups in there I think you can cook almost everything in a slow cooker if you look it up online there's some really tasty recipes on there, the bonus is turn the slow cooker on low and it'll be ready when you are - I swear by mine and the added bonus is you can have everything prepared first thing in the morning when you have all your spoons and have the remainder your spoons for the rest of the day to with what you want and of you run out atvleast dinner is there 
Slow cooker recommended too. I always try to freeze home cooked stuff, so it's quick defrost n reheat when tired. There's always jacket potatoes, nothing wrong with pasta after all you can put anything in it when tired using tinned or frozen veg for ease. Don't be so hard on yourself when tired, I'm sure you all eat really well rest of the time as you research everything so carefully. Give yourself a break Natura, we all get those days - I slept for nearly 3 days solid last week, vaguely remember doing bits in between. Turns out bloods not doing so well again, now need to see if methotrexate is not doing its job. Take care x
Sorry Tashi...hope u feel better soon...all good ideas with slow cooker. I had one and got rid of it cause I don't plan well. Thinking bout getting another one. Part of the tiredness is trying to make everyone in the house happy. My mom made us eat whatever she made...forced to actually. Hated that growing up. I went the other extreme, and have been making two meals for dinner for my overly sensitive daughter and the rest of us. Now my other daughter is complaining, and my husband for not making enough for him. Some days he is hungry, and some days not. We are financially strained and on a limited budget already. So, I try to buy minimally. I am just tired.
I would suggest, after raising two girls and one boy, that teens are old enough to be helping you with meals or preparing them on their own for you. Mine are raised and with their own children and the three of them love to cook. If you are to exhausted to prepare a meal, let them experiment.
And I am sorry you are going through this bad spell.
Good ideas chapter. I actually have been asking the girls for help. My one daughter will help sometimes, the other very limited. See, we are all in the autism spectrum. Very low end and functional, but exhausting to get any one up to help. Laziness is strong with all of us. We would literally starve if I didn't cook, or go out to get take out. Ugh!
I use a slow cooker and cook for two days and freeze one portion for another day. My two sons cook a meal each, we have a take out on Saturdays and on Sundays my husband cook a roast dinner and we freeze the left over meat for another dinner.
We do cook or I should say I cook lovely meals when I have lots of energy but I sometimes use ready made meals such as real mashed potatoes and cooked frozen meats which are usually quite reasonable priced from any supermarket or freezer stores.
Hope you get a burst of energy soon, take care. God bless xxx
Thanks Maureen...I do get the energy to cook good meals here and there. In fact, my husband noticed the other day when I made a really nice chicken hot sauce dinner. It came out really good. Made it twice in one week. He's good about not getting tired of something good. Haven't had a vacation in a year, and our camping trip got cancelled this week because of hubby's job. I need a break...
Hope you manage to go on your vacation soon. It's good to get away and relax.
Blessings and praying for energy and strength for you xxx
Thanks Maureen....trying to work out a Disney trip, but father in law who is 80 is healthier than me and just doesn't understand why I don't want to put vacation off another year. Ugh!
Hope you manage to go on the Disney trip. I guess your father in law will be going with you, if yes hope it works out.
I went with my mom and daughter on a cruise and my mother who is and was 85 at the start of the cruise was awful (she is also fitter than me). I didn't Luther know how I'll I was feeling but because I look fine she just expected too much from me.
Hope I haven't put you off and go and enjoy xx
Maureen....no fAther In law not interested in going. He's just in control of our finances. Another sore spot for me. But, boy do I understand that being pushed when we look ok on the outside. Sorry that happened to u. I go out of my way to say I don't feel good because I look ok on the outside. Then I get, you're scaring the kids. So, I keep quiet now. I don't say anything anymore.
I understand how you feel Natura. Not having enough spoons really sucks. I find I need to rest before cooking too, so often I make things earlier in the day like salads, soups and stews while I have the energy, especially if I have plans for the afternoon. In the weeks when I have slightly more energy I can enjoy cooking creatively. When I'm not so good, I reserve all my most basic meals for this time - baked potatoes, one pot dishes, roasted veg with condiments and gf bread, that kind of thing. I agree with tashi, give yourself a break - lupus is a really big limiting factor that we are up against.
you hate cooking. that's what I read. don't cook anymore, I eat in a lot of restaurants. its can cost exactly the same minus the depression from redundancy of doing something I despise, if you find the right places. also, by the time my kids left home I was happy. I realized I didn't want to hang with kids anymore. it was redundant and boring and depressing. us moms do a LOT of redundant, boring, depressing stuff because we HAVE TO. we are normal when we SNAP! its a pressure release. just accept you don't want to do some of the redundant, boring things you have been forcing yourself to do for 20 years. change up. and be bloody happy you are testing negative for lupus.
Marie...i try to do take out when i cant manage. I dont eat a lot these days. Never an appetite. 3 more years and kids off to college! I love them to death, but there is a lot of stress with homework, tests, etc. One daughter is in the spectrum, and another social anxiety. I tested negative over a year ago, i dont have good ins so i dont get regular bloodtests. But, i do get a lot of the symptoms...i treat naturally so i never have a day of energy, or no symptoms. I juice when i feel really bad. I should juice everydya, but too tired. I am looking into oils soon, as i was toldby a co worker that there is a doctor out east that is treating many disease with oils. And its working. Would love to see if he could help me, but $ is always a problem.
And i didnt mind doing things with my girls. I loved every moment with them. I lost my mom when i was 11, so i value every minute with my girls. Even when its boring! Ha....
All my sympathies but sadly no answers, just want you to know I too am undiagnosed and the past two years of my life have changed my quality of life and relate to you with multiple problems I have including the tiredness fatigue stamina weakness, it’s intolerable at times and clear bloods leave us or me in no MSN’s land and no help for better days other than luck.
You need to push for answers, when you can as I do, it’s no way to live when help can be afforded . We shouldn’t have to struggle because of clear bloods, when clinically we paint a picture. Slow cookers are a good idea to help but please don’t give up looking for answers. Not a silly question either 🙌🏻
Best wishes 🙏
Slow cooker Soup maker
Bread maker
Sorted 😜
Methotrexate by injection? Help.
Does it ever end?
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