Welcome to the Prison Talk Online Community! Take a Minute and Sign Up Today!






Go Back   Prison Talk > BREAK TIME > Dieting & Health
Register Entertainment FAQ Calendar Mark Forums Read

Reply
 
Thread Tools Display Modes
  #1  
Old 06-12-2019, 11:38 PM
Amandainohio Amandainohio is offline
Registered User
 

Join Date: Jun 2019
Location: Ohio USA
Posts: 141
Thanks: 34
Thanked 55 Times in 42 Posts
Question Does anyone else have Lupus?

What have you found helps you keep your stress levels lowered so you donít end up in a flare? Anyone else have major issues with falling asleep & staying asleep no matter how tired you are?
__________________


Reply With Quote
Sponsored Links
  #2  
Old 07-02-2019, 01:24 PM
keywii's Avatar
keywii keywii is offline
Strength Keeps Me Going
 

Join Date: Aug 2017
Location: On A Rocket
Posts: 387
Thanks: 345
Thanked 406 Times in 223 Posts
Default

Quote:
Originally Posted by Amandainohio View Post
What have you found helps you keep your stress levels lowered so you donít end up in a flare? Anyone else have major issues with falling asleep & staying asleep no matter how tired you are?
I don't have lupus but my sister-in-law has it. If you like I could ask her what she does to keep her stress levels lowered and if she has any issues with falling asleep or staying asleep? I don't mind asking and she wouldn't mind answering.
Reply With Quote
The Following User Says Thank You to keywii For This Useful Post:
Amandainohio (07-02-2019)
  #3  
Old 07-02-2019, 02:31 PM
miamac's Avatar
miamac miamac is offline
Site Moderator

Staff Superstar Winner PTO Site Moderator 

 

Join Date: May 2013
Location: ORnativeAZresCAtied
Posts: 11,209
Thanks: 15,114
Thanked 22,294 Times in 7,910 Posts
Default

Quote:
Originally Posted by Amandainohio View Post
What have you found helps you keep your stress levels lowered so you donít end up in a flare? Anyone else have major issues with falling asleep & staying asleep no matter how tired you are?
Aww, hun. I'm sorry I didn't see this post when it was first made. I've not been diagnosed with Lupus but I have Chronic Lyme, Fibromyalgia and active Valley Fever. So I feel ya!

Managing stress is a tough one. Some things just have to be done, some things we want to do. But our expendable energy level is a little lacking. The only tips I have are the age old-- learn to say no to what doesn't absolutely have to be done, delegate when you can, put yourself first (including diet, taking meds regularly and rest) and realizing that sometimes it's still going to go to crap. Lol

I have unrefreshing sleep from the fibro. Meaning I can sleep 10 hours and wake up as fatigued as if I hadn't slept well at all. I fall asleep during visits with my husband (it's embarrassing). I've tried so many things including prescriptions and it's been hit and miss with what works and for how long. My rheumatologist is big on sleep hygiene. You can Google it and see what the outline for that is.

I'm sorry you live with this. It blows, eh?
Reply With Quote
The Following User Says Thank You to miamac For This Useful Post:
Amandainohio (07-02-2019)
  #4  
Old 07-02-2019, 03:31 PM
Amandainohio Amandainohio is offline
Registered User
 

Join Date: Jun 2019
Location: Ohio USA
Posts: 141
Thanks: 34
Thanked 55 Times in 42 Posts
Default

Quote:
Originally Posted by miamac View Post
Aww, hun. I'm sorry I didn't see this post when it was first made. I've not been diagnosed with Lupus but I have Chronic Lyme, Fibromyalgia and active Valley Fever. So I feel ya!

Managing stress is a tough one. Some things just have to be done, some things we want to do. But our expendable energy level is a little lacking. The only tips I have are the age old-- learn to say no to what doesn't absolutely have to be done, delegate when you can, put yourself first (including diet, taking meds regularly and rest) and realizing that sometimes it's still going to go to crap. Lol

I have unrefreshing sleep from the fibro. Meaning I can sleep 10 hours and wake up as fatigued as if I hadn't slept well at all. I fall asleep during visits with my husband (it's embarrassing). I've tried so many things including prescriptions and it's been hit and miss with what works and for how long. My rheumatologist is big on sleep hygiene. You can Google it and see what the outline for that is.

I'm sorry you live with this. It blows, eh?
I have found, at least lately, no matter how much or how little I sleep I am exhausted all day long but still have a very hard time falling asleep. I still havenít been put on any medication to help since my rheumatologist wanted to run a bunch more tests I presume to see if anything else is going on too. I go back to see him next Tuesday. For the most part I have been able to get my kids that still live at home to take over most of the daily chores which has been a godsend. Only thing I could not get any of them to help with was to take care of our rabbits, ended up having to get out of breeding and showing them for the time being at least.
How long have you been dealing with your illnesses? Does it ever seem to get easier to deal with them as time has gone by?
__________________


Reply With Quote
  #5  
Old 07-02-2019, 07:49 PM
miamac's Avatar
miamac miamac is offline
Site Moderator

Staff Superstar Winner PTO Site Moderator 

 

Join Date: May 2013
Location: ORnativeAZresCAtied
Posts: 11,209
Thanks: 15,114
Thanked 22,294 Times in 7,910 Posts
Default

Quote:
Originally Posted by Amandainohio View Post
How long have you been dealing with your illnesses? Does it ever seem to get easier to deal with them as time has gone by?
Contracted Lyme in 1987, diagnosed with fibromyalgia about 18 months ago and Valley Fever about a year ago. I'm 41.

It gets easier only in that you learn your limitations and how to respect them (and when to blow them off and pay the price, sometimes it's worth it). It's easier when the people around you are open to learning about your illness so you're not constantly having to explain why you need to lie down or why you've had to cancel plans (again). That part-- feeling like you're letting folks down and maybe they even treat you as if you're just flaky, is harder sometimes than the illness itself.

Diet is a really big part of it but the trick is not listening to everyone and their grandmother over it. What works for them may not do anything to help you. For me it's limiting wheat, sugar and red meat. Those things cause inflammation in me.

I think the hardest part has always been, because I was in grade school when the Lyme popped up, is that I look fine. So people expect the things of a person who appears fine. But I am in constant pain. It never isn't there. I'm fighting to stay awake most of the time. I can't remember things. I can't go out and socialize like someone else my age. A day that I shower, put on makeup and go to the store is HUGE. The day I visit my husband requires 1-2 days of recovery. They don't see that part.

If you've never seen Unrest, try to watch it. She has chronic fatigue syndrome so it's different, but their are so many crossovers when talking about autoimmune issues and chronic illness in general, that it's nice to see someone talking about it. It's a tough watch, but it made me feel like there was a community out there who understood.
Reply With Quote
The Following User Says Thank You to miamac For This Useful Post:
Amandainohio (07-02-2019)
  #6  
Old 07-02-2019, 08:50 PM
Amandainohio Amandainohio is offline
Registered User
 

Join Date: Jun 2019
Location: Ohio USA
Posts: 141
Thanks: 34
Thanked 55 Times in 42 Posts
Default

Quote:
Originally Posted by miamac View Post
Contracted Lyme in 1987, diagnosed with fibromyalgia about 18 months ago and Valley Fever about a year ago. I'm 41.

It gets easier only in that you learn your limitations and how to respect them (and when to blow them off and pay the price, sometimes it's worth it). It's easier when the people around you are open to learning about your illness so you're not constantly having to explain why you need to lie down or why you've had to cancel plans (again). That part-- feeling like you're letting folks down and maybe they even treat you as if you're just flaky, is harder sometimes than the illness itself.

Diet is a really big part of it but the trick is not listening to everyone and their grandmother over it. What works for them may not do anything to help you. For me it's limiting wheat, sugar and red meat. Those things cause inflammation in me.

I think the hardest part has always been, because I was in grade school when the Lyme popped up, is that I look fine. So people expect the things of a person who appears fine. But I am in constant pain. It never isn't there. I'm fighting to stay awake most of the time. I can't remember things. I can't go out and socialize like someone else my age. A day that I shower, put on makeup and go to the store is HUGE. The day I visit my husband requires 1-2 days of recovery. They don't see that part.

If you've never seen Unrest, try to watch it. She has chronic fatigue syndrome so it's different, but their are so many crossovers when talking about autoimmune issues and chronic illness in general, that it's nice to see someone talking about it. It's a tough watch, but it made me feel like there was a community out there who understood.
I will have to see if I can find Unrest to watch sometime soon. I am very close to the same age as you, I am 42, but my issues didnít really start until I was in my very early 30ís. Finally found a doctor that is listening when I feel off and ran the tests to figure out why. Definitely feel you on the looking ok but feeling like poop and that is with my high tolerance for pain. There are some days where it is even a struggle to brush through my hair so no makeup for me even on a good day.
__________________


Reply With Quote
The Following User Says Thank You to Amandainohio For This Useful Post:
miamac (07-02-2019)
  #7  
Old 07-02-2019, 08:52 PM
Amandainohio Amandainohio is offline
Registered User
 

Join Date: Jun 2019
Location: Ohio USA
Posts: 141
Thanks: 34
Thanked 55 Times in 42 Posts
Default

Quote:
Originally Posted by keywii View Post
I don't have lupus but my sister-in-law has it. If you like I could ask her what she does to keep her stress levels lowered and if she has any issues with falling asleep or staying asleep? I don't mind asking and she wouldn't mind answering.
That would be great, thank you. At this point I am pretty open to trying almost anything that would help even a little bit.
__________________


Reply With Quote
  #8  
Old 07-02-2019, 09:36 PM
onedayatatime13 onedayatatime13 is online now
Registered User
 

Join Date: Apr 2017
Location: United States
Posts: 2,709
Thanks: 447
Thanked 3,510 Times in 1,636 Posts
Default

I have a friend with lupus who runs the website www.butyoudontlooksick.com

Also, deals with other autoimmune diseases that aren't visible to people. Lots of interesting information there.
__________________


Reply With Quote
The Following 2 Users Say Thank You to onedayatatime13 For This Useful Post:
Amandainohio (07-02-2019), miamac (07-02-2019)
  #9  
Old 07-02-2019, 09:41 PM
keywii's Avatar
keywii keywii is offline
Strength Keeps Me Going
 

Join Date: Aug 2017
Location: On A Rocket
Posts: 387
Thanks: 345
Thanked 406 Times in 223 Posts
Default

Quote:
Originally Posted by Amandainohio View Post
What have you found helps you keep your stress levels lowered so you donít end up in a flare? Anyone else have major issues with falling asleep & staying asleep no matter how tired you are?
I was able to ask my sister law and this what she told me. I hope this can be some help to you.

For stress maintenance - I avoid the sun which entails wearing UV protective clothing or spf 100 sunscreen when I am out in the sun. I also avoid the hottest times of the day 10am-3pm. Workout, hike and know my limits, if possible take naps when tired.

Yes, I do have trouble sleeping, that usually comes along with the medications particularly prednisone and immune suppressants. I try to take it as early in the morning as possible. Literally set my clock to wake up at 4am to take it, but I also head to the gym at 5am so it works.

I take supplements to help also: Black seed oil, iron, vitamin D, vitamin C and if I really need to get through the day I use zip fizz it's a vitamin b12/caffeine boost.

Naps are important if you can get them in, lunch breaks when you get home. I also use lavender to get to sleep and my salt lamp, those require consistency.

She also mention that she has been on trail and error mission. There are foods that will trigger flares also, mostly "night shade vegetables" would be good to look them up and see what they are.

If she thinks of anything else that could help you. I'll let you know Queen. I hope this was helpful.
Reply With Quote
The Following 2 Users Say Thank You to keywii For This Useful Post:
Amandainohio (07-02-2019), miamac (07-02-2019)
  #10  
Old 07-02-2019, 10:35 PM
Amandainohio Amandainohio is offline
Registered User
 

Join Date: Jun 2019
Location: Ohio USA
Posts: 141
Thanks: 34
Thanked 55 Times in 42 Posts
Default

Quote:
Originally Posted by onedayatatime13 View Post
I have a friend with lupus who runs the website www.butyoudontlooksick.com

Also, deals with other autoimmune diseases that aren't visible to people. Lots of interesting information there.
Definitely will have to check that site out soon, thank you for sharing it
__________________


Reply With Quote
  #11  
Old 07-02-2019, 10:43 PM
Amandainohio Amandainohio is offline
Registered User
 

Join Date: Jun 2019
Location: Ohio USA
Posts: 141
Thanks: 34
Thanked 55 Times in 42 Posts
Default

Quote:
Originally Posted by keywii View Post
I was able to ask my sister law and this what she told me. I hope this can be some help to you.

For stress maintenance - I avoid the sun which entails wearing UV protective clothing or spf 100 sunscreen when I am out in the sun. I also avoid the hottest times of the day 10am-3pm. Workout, hike and know my limits, if possible take naps when tired.

Yes, I do have trouble sleeping, that usually comes along with the medications particularly prednisone and immune suppressants. I try to take it as early in the morning as possible. Literally set my clock to wake up at 4am to take it, but I also head to the gym at 5am so it works.

I take supplements to help also: Black seed oil, iron, vitamin D, vitamin C and if I really need to get through the day I use zip fizz it's a vitamin b12/caffeine boost.

Naps are important if you can get them in, lunch breaks when you get home. I also use lavender to get to sleep and my salt lamp, those require consistency.

She also mention that she has been on trail and error mission. There are foods that will trigger flares also, mostly "night shade vegetables" would be good to look them up and see what they are.

If she thinks of anything else that could help you. I'll let you know Queen. I hope this was helpful.
Looks like I picked good when I bought my sunscreen for this summer, I went with 100 spf since I am very light skinned not that I willingly will go in the sun. I will have to check into taking a few of the supplements that she mentioned. I already have to take vitamin d at a high does just to keep my level just barely above the acceptable range. Supposed to be taking vitamin b-12 but my primary doctor still hasnít called in my refill (also a high dose). Surprisingly my iron is good now, used to be a very big issue to the point I had to go to a oncologist. I work from home so if I am able to actually fall asleep I can take naps but no matter how tired I am I still have a very hard time falling asleep. Will have to check out the food aspect though, that is one area I have not paid too much attention to yet.
__________________


Reply With Quote
Reply

Bookmarks

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Anyone else have LUPUS or RAYNAUD'S??? yana Dieting & Health 0 01-31-2007 08:45 PM
What is Lupus? mandj4 Dieting & Health 7 01-31-2007 08:40 PM
Lupus minilovesangel Mental Health 9 04-07-2006 07:52 PM
Lupus - Right to be seen by doctor? minilovesangel General Health Care 14 12-29-2005 03:00 AM


All times are GMT -6. The time now is 07:57 AM.
Copyright © 2001- 2017 Prison Talk Online
Powered by vBulletin® Version 3.7.4
Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Website Design & Custom vBulletin Skins by: Relivo Media
Message Board Statistics