Possibilities versus the I am not able to's

General
1

Hello everyone.

perhaps this should have been a blog, if so, a moderator contacting me is welcome. can copy, paste, and delete this post and use the blog.

we have good times, and less than good times. coping through the less than good ones is... often frustrating.

have a number of things am able to do when less than at my best. after a while though, boredom sets in, and my mind and heart begin to ache for what once was my reality. better to live in the here and now, with acceptance.

wondering what others here do to stay busy, and productive, when facing a flare? please help me make a list not only for myself, but could help others here as well.

here are some things I do:

1 read when able to concentrate, especially fiction for an escape

2 spend time with my furry companions

3 attempt to work on crafts, going slow since motor skills less than optimal

4 take good care of myself through prayer, meditation, chair yoga, dirt therapy

5 look for additions to my collection, as well as husband's.

thanks for reading and, if you can, contributing.

gentle hugs,

Morgan

2

Morgan, this is a wonderful idea! I make quilts, purses, totes, tablerunners, pillow cases, and whatever else strikes my fancy. I also spend a lot of time on the phone with whomever wants to call to share a laugh or need a friend (or Mom) to listen. I have two sisters with auto immune diseases plus other health issues and we are very close. I too meditate and pray. Right now I am moving into a new town and one of my sisters is helping my husband and I a lot with this move. I am really hurting and flaring but somehow I keep moving and I am grateful for that.

Thank you for posting this.

3

I love to read as well! Especially with the dog curled up with me.

I also quilt, pray, and take Zumba classes twice a week. There's an aqua-zumba that I really want to try this summer since it'll be easier on the joints.

4

Great idea Morgan. Here are some of the things I do. Read, Pinterest, sit in the shade in my yard enjoying looking at my garden, watch TV or a good movie, YouTube (there are lots of interesting videos, not just music), call someone on the phone to talk, visit my neighbor, talk to God, give attention to my dogs or take one for a walk, hang clothes outside to dry, edit/crop photos, paint anything.

5

(1) I walk through our community park not far from my house..and like to take photo's of the nature, photographing.

(2) Photographing about anything and everything

(3) I write blogs, journal

(4) scrap booking.

(5) I make things out of Popsicle sticks, working on a light house.

I make quilts and am on the phone talking to my daughter practically every day.

I don't read much because I can't remember what I read, I have dyslexia. It is frustrating. Keep busy with my dogie, teaching her new tricks.

6

Hi, hope that you are feeling better!! Yes there is so much that we want to do ,BUT can’t !!! We try to stay as normal as we can , but knowing that our problem don’t or won’t at the wrong time(that is when we are having a FLARE). Most of the things that you have put on your list is very good-smile. Yes we try , we have to Try much harder when really put our mind to doing the things that we enjoy the most. But doing those things require the main factor while we are “Living with Lupus” , that is REST and a lot of it (much as Possible…LOL. ) Please remember that -rest is the main factor , and taking your meds. , talking with your doctor -always !, oh , and also Don’t STRESS, also visiting here with us Whenever you want to talk, ask questions , and to vent at anytime. Hope you feel better soon! …Beverly L.

7

Hello Morgan,

Adding this discussion which you have helps other members get involved in what they have otherwise in their lifes to look at besides the constant nagging of Lupus and to whatever you feel best with wheather it be a discussion or blog...ADD AWAY.

1. I get great achievement in sharing what i go through besides hearing my friend on LWL over the net.

2. I love my reading of books besides knowledge off the internet.

3. I adore the love and company i get from my hubby besides my staff Bruno who never leaves my side through my illnesses.

4. I clean the best way possible through my OCD and my disability at it's limits

5. Sitting out under the gazebo when it's warmer to achieve some fresh air when i can through my raynauds and i love the beauty of the garden.

"THANKS SO MUCH FOR ADDING THIS DISCUSSION"

Hugs Terri :) xxx

8

What is feeling normal anymore? I would not know. I feel I am awkward and lopsided half the time.

I have good days and than there are days when the pain just wrestle with me. I am not a huge fan on taking medications because you don't know what makes you worse, the side effects of the medication or the aches and pains from living with lupus. I love getting out enjoying the fresh air and watching the trains traveling through. This morning, I have pain in the back of my neck, stiffness where it is hard at times to hold my neck up. I pray and thanking God for each new day that I have good days. Hugs to you Morgan.

9

Thanks for starting this discussion : )

I'm having a tough time adjusting to having free time on my hands. I'm used to go, go, go. I don't have a schedule, and I feel out of control sometimes. I started journaling, so I can remember what I did yesterday. I'm going to get my scrapbooking supplies out, and start again. I'm walking more each day, and teaching my puppy how to walk and not pull me down the street. This morning I was playing with her and we were getting a little rough, and she nipped my hand and I said NO! and she stopped immediately. She knows she can't be too rowdy with me.

Reet: The weather changes have been tough this week, and I've really been hurting more, so this may be affecting you too.

10

Hello Morgan,

If i was'nt so ill my OCD would become a cleaning job don't worry on that score because in the UK now, people with the disorder are going around cleaning other people's homes besides the streets.

It's one mentally torturing disorder especially when your limited in what you can do, so i try daily to keep on top of things but the best buy my hubby did was buying a light weight vacuum cleaner smiley 1.25kg in weight, oh yes it's brill mate happy emoticon

Oh would'nt live be great if we all had our energy back to normal just like this washing dishes smiley

smiley gets a big hug emoticonTerri :)

11

Hi Trisha,

I am sorry mate that being out of work as throwed you out of a routine your liked and i will admit it's hard adjusting...well it was for me for many years.

It's lovely to hear your walking more and getting your pup into shape and the nipping is just actually testing you to see how fare you can be pushed. :) xxx

Trisha said:

Thanks for starting this discussion : )

I'm having a tough time adjusting to having free time on my hands. I'm used to go, go, go. I don't have a schedule, and I feel out of control sometimes. I started journaling, so I can remember what I did yesterday. I'm going to get my scrapbooking supplies out, and start again. I'm walking more each day, and teaching my puppy how to walk and not pull me down the street. This morning I was playing with her and we were getting a little rough, and she nipped my hand and I said NO! and she stopped immediately. She knows she can't be too rowdy with me.

Reet: The weather changes have been tough this week, and I've really been hurting more, so this may be affecting you too.

12

I am just trying to adjust to the changes I had to make since I was diagnose with Lupus on April 23,2013 and concern what follows ahead of me, the tests, medication..I did get predisone shots, doctor felt my legs were too weak. Walking with a walker now is a big adjustment in my life and a cane. Those shots hurts..but helps.

13

Yes, Trish, this weather is putting us all over the edge. My younger sister finally had to slow down yesterday after she had been mowing and doing other things when the rain started. Then her fibro kicked in big time. I slept most of yesterday.

Morgan, I wish I could say I have been taking it easy but I haven't at all except for yesterday. I am so far beyond in the pain category and my new patches aren't working, that I don't know when I am going to feel better. But I am happy to be in our new home and things are getting done faster then I imagined. My sister goes home to Tampa tomorrow but will return on June 12th for our great niece's wedding. We are very close to her and her sisters too. I wish you and everyone in the world had great siblings like I do. We are also close to our brother who also lives in FL. I am so sorry that you are dealing with all this and have small children too. I had a lot of issues when my children were young and with hindsight I imagine it was lupus that was a part of everything but I didn't get diagnosed for a long time then with moves different doctors said I didn't have it, etc, etc. None of them concur on anything in the medical field so now I just tell them I am not going to dink around with their egos and I will simply go to someone who wants to help me. And I do. When one gets older our way of looking at things changes a lot and I for one feel more in control of my life.

Hugs, Reet

14

Hello Liz,

Sorry to say but i'm 45 this year and use a rollator/wheelchair/walking sticks and normal sticks, i never know how i'm getting out of bed from one day to the next ....so i can deeply sympathize with you but please learn as much as you can about the disease although it's hard as it will help confronting specialists plus also knowing what meds they're on about when offered.

Love & kisses Terri xxx

lizluvsu said:

I am just trying to adjust to the changes I had to make since I was diagnose with Lupus on April 23,2013 and concern what follows ahead of me, the tests, medication..I did get predisone shots, doctor felt my legs were too weak. Walking with a walker now is a big adjustment in my life and a cane. Those shots hurts..but helps.

15

Morgan,

LOL, my puppy says, I'll just go to Daddy......

I feel out of control, with no real schedule. I agree it is nice to be able to get a rest when I need it.

Morgan said:

Trisha, thank you for your input.

Now, repeat this to your doggie, often:

"I AM ALPHA, you are not. keeper of all treats, food, water, and cuddly petting.

you want it to stay that way, trust me. if I have an accident in the house, you

won't enjoy clean up duty. I'm bigger, so you know what that means."

(tried this with my hounds, they laughed and went back to sleep.

to punctuate the point, they fogged up the room so badly had to break out

the febreeze.)

So puppy training, walking, taking good care of yourself, journaling, all sounds like you are coping pretty well!

for me, lack of a schedule is a comfort. a blessing. able to do what I want and need when my body will co - operate. You will find your comfort zone. been asking myself, with no real demands on my time, what do I want to do and accomplish? What are my dreams now?

hugs, morgan



Trisha said:

Thanks for starting this discussion : )

I'm having a tough time adjusting to having free time on my hands. I'm used to go, go, go. I don't have a schedule, and I feel out of control sometimes. I started journaling, so I can remember what I did yesterday. I'm going to get my scrapbooking supplies out, and start again. I'm walking more each day, and teaching my puppy how to walk and not pull me down the street. This morning I was playing with her and we were getting a little rough, and she nipped my hand and I said NO! and she stopped immediately. She knows she can't be too rowdy with me.

Reet: The weather changes have been tough this week, and I've really been hurting more, so this may be affecting you too.

16

Nice one Ann what you do plus the great qualifications you have to go with it :)

Ann A. said:

I take and teach online classes. Keeps my mind occupied, provides some structure for my time, and gives my poor prosthetic knees a break.

17

Yeah, that is what scares me, I once was so active and worked in the nursing home but had to quit because my legs were just getting weaker. Since I fell once and busted my head open, I have the fear of falling again. One thing I cannot understand, I may be wrong, but to the best of my knowledge, I don't think I ever hear any commercial or on the news ever mentioned about Lupus disease.


Tez_20 said:

Hello Liz,

Sorry to say but i'm 45 this year and use a rollator/wheelchair/walking sticks and normal sticks, i never know how i'm getting out of bed from one day to the next ....so i can deeply sympathize with you but please learn as much as you can about the disease although it's hard as it will help confronting specialists plus also knowing what meds they're on about when offered.

Love & kisses Terri xxx

lizluvsu said:

I am just trying to adjust to the changes I had to make since I was diagnose with Lupus on April 23,2013 and concern what follows ahead of me, the tests, medication..I did get predisone shots, doctor felt my legs were too weak. Walking with a walker now is a big adjustment in my life and a cane. Those shots hurts..but helps.

18

Hi Liz,

Have the specialist's ever looked at you for Muscle Atrophy which occurs with Lupus known as Muscle wastage as it's really taken me down the hill, i'm typing now and in my wheelchair.

Well where you have the fear of falling i don't, my heads like the map of the world..i've gone down with seizures besides passinbg out and like yourself cut my head open, damaged teeth oh the list goes on and in 27yrs i've got to the state if it's going to happen it will...i find the Lupus and the rest an hard struggle now on top, i was born with it all and never knew till i was diagnosed.

The diease is well known in the USA but here in the UK it's a big NO plus it's hard to establish as a severe illness through it bein such an hidden disease which helps none of we. :) xxx

19


Hi, I have fell a couple of times myself and could not understand why. After telling my doctor about this , he really just said it was the Lupus affecting my balance-LOL!!! What in the world is that, to say to me ?? But lately I have not had that to happen , so I guess it comes and go , I don’t know !!! And am like you , it scares me also. Be carefully…Beverly L.


lizluvsu said:

Yeah, that is what scares me, I once was so active and worked in the nursing home but had to quit because my legs were just getting weaker. Since I fell once and busted my head open, I have the fear of falling again. One thing I cannot understand, I may be wrong, but to the best of my knowledge, I don’t think I ever hear any commercial or on the news ever mentioned about Lupus disease.


Tez_20 said:

Hello Liz,

Sorry to say but i’m 45 this year and use a rollator/wheelchair/walking sticks and normal sticks, i never know how i’m getting out of bed from one day to the next …so i can deeply sympathize with you but please learn as much as you can about the disease although it’s hard as it will help confronting specialists plus also knowing what meds they’re on about when offered.

Love & kisses Terri xxx

lizluvsu said:

I am just trying to adjust to the changes I had to make since I was diagnose with Lupus on April 23,2013 and concern what follows ahead of me, the tests, medication…I did get predisone shots, doctor felt my legs were too weak. Walking with a walker now is a big adjustment in my life and a cane. Those shots hurts…but helps.

20


That very cute.LOL…Beverly L.


Tez_20 said:

Hello Morgan,

If i was’nt so ill my OCD would become a cleaning job don’t worry on that score because in the UK now, people with the disorder are going around cleaning other people’s homes besides the streets.

It’s one mentally torturing disorder especially when your limited in what you can do, so i try daily to keep on top of things but the best buy my hubby did was buying a light weight vacuum cleaner smiley 1.25kg in weight, oh yes it’s brill mate happy emoticon

Oh would’nt live be great if we all had our energy back to normal just like this washing dishes smiley

smiley gets a big hug emoticonTerri :slight_smile: