PDA

View Full Version : Describing a day in the life.



Sandra
09-11-2009, 09:00 PM
Hi, I have been trying to figure this new illness that has been added to my life. I find that there is so much formal information out there, as there is with most illnesses. But I just get so tired of trying to figure it all out, and to understnd it all. I get tired of trying to describe symptoms and problems that I can't find the words for.
I wish there was such a place where I could just read about the day in the life.... I think it would be so refreshing and enlightening....

Maybe it would kind of go like this....
I went to bed as I was so, so very tired, my body had endured another day and I was satisfied with my effort and performance even if I was a bit disappointed in the what I could used to do or what i had wanted to do.
I have worked hard to make my room comfortable and inviting to sleep...I fall asleep fairly easily... I can actually hear myself breathing it is kind of painful and short, the breaths so hard and so deep...when suddenly I feel a jolt that wakes me instantly....being that this was not nearly the first time there was no fear or panic... I felt hot, on fire inside and on my skin, so I rapidly kicked off my covers to allow my temperature to cool while I sat up and drank from a large glass of cool water to further cool me....maybe I would use the lotion beside my bed too to cool my hands and arms further....my neck hurts and I feel pressure in my head and face....now there is the frustration left as now I wondered if i could ever get back to sleep... I piled up the many pillows to allow me to sleep sit in a more comfortable position which maybe would also help me to breath easier....I finally fall asleep.... a few hours later I awake again....something is bothering me....it is pain....in my hip and neck I hurt and I try to adjust position again and get comfortable maybe I will be lucky enough to go right back to sleep....I do for a few moments but now I am not sleeping deeply enough not to feel the pain....in an hour or so I give up and go for some tylenol as I am beginning to feel pain in my jaw and face...I wonder is it the inflammation or is it from the clinching of my teeth in frustration of another not so perfect night.....

Of coarse I could go on about the morning...but i won't as this post is too long already, but don't you think it would be a mind blowing way for not only us to understand but our family and firends too...our symptoms, and struggles, of a day in the life... and so much less mind numbing that medical journals....just a thought Sandra

bunnie
09-12-2009, 08:37 AM
Good morning, Sandra!
I think you just described my typical night. Just add a baby who has a cold into the mix!! LOL
The fact that we look pretty normal on the outside, makes it so hard for them to understand. I love the "spoons theory", my hubby and I actually use that to gauge where I am at at a given time.
Lupus keeps you on your toes, always changing, so you have to change with it.
Praying for understanding family and friends for you,
Deb

mountaindreamer
09-12-2009, 09:00 AM
hi sandra,

your description of a night with lupus was "on target." Last week my rheumy asked me if the pain ever wakes me up at night....i loooked at her and said "it never lets me sleep through the night."

My shoulders will wake me up if i move them the wrong way, my hands will wake me up if i straighten my fingers, my calves will go into spasms, my feet will wake me up if the covers are too heavy on them, and my headache will wake me up if i get off of the "thousands" of pillows that i use trying to get a decent night's sleep. And yes, my hips and knees will also wake me up just for the pure hell of it.

And sometimes i wake up because "I get just plain hungry". So, off to the kitchen i go for a snack, come back to bed and turn on HGTV. Then i just wait to see if i go back to sleep, or if i am up for the rest of the night.

Sandra
09-12-2009, 05:01 PM
I kind of would really like to have a collection of a day in the life, detailed of coarse, from everyone,...it helps... funny I googled just that, "a day in the life Lupus" sure enough somebody has done it, it was very interesting and informative and as I mentioned much less "scientific". Thank goodness for science, where would we be without it, but this kind of personal description sure makes you feel more at home, less confused and it helped me not to disregard symptoms that I always felt were just my own bothersome unimportant issues. My next rhuemy visit will be much more direct.
thanks Sandra

bunnie
09-12-2009, 06:40 PM
Hi mountaindreamer,


Last week my rheumy asked me if the pain ever wakes me up at night....i loooked at her and said "it never lets me sleep through the night."

My shoulders will wake me up if i move them the wrong way, my hands will wake me up if i straighten my fingers, my calves will go into spasms, my feet will wake me up if the covers are too heavy on them, and my headache will wake me up if i get off of the "thousands" of pillows that i use trying to get a decent night's sleep. And yes, my hips and knees will also wake me up just for the pure hell of it.

And sometimes i wake up because "I get just plain hungry". So, off to the kitchen i go for a snack, come back to bed and turn on HGTV. Then i just wait to see if i go back to sleep, or if i am up for the rest of the night.

You said it!! Sleep through the night? I think I can count on one hand the number of nights I have slept at least 6 hours straight in the past 6 years!! Your comment on the covers being too heavy on your feet totally cracked me up. I thought I was the only one with that strange issue. I cannot have the covers tucked in at the end of the bed for this very reason!! :laugh:

Have a good night,
Deb

bunnie
09-12-2009, 06:41 PM
Hi Sandra,
I think that "a day in the life" thread is a great idea!! It would be really interesting to see how each of us gets through a typical day.:yes:
God Bless,
Deb

smokerscat94
09-13-2009, 04:59 PM
Hi, I have been trying to figure this new illness that has been added to my life. I find that there is so much formal information out there, as there is with most illnesses. But I just get so tired of trying to figure it all out, and to understnd it all. I get tired of trying to describe symptoms and problems that I can't find the words for.
I wish there was such a place where I could just read about the day in the life.... I think it would be so refreshing and enlightening....

Maybe it would kind of go like this....
I went to bed as I was so, so very tired, my body had endured another day and I was satisfied with my effort and performance even if I was a bit disappointed in the what I could used to do or what i had wanted to do.
I have worked hard to make my room comfortable and inviting to sleep...I fall asleep fairly easily... I can actually hear myself breathing it is kind of painful and short, the breaths so hard and so deep...when suddenly I feel a jolt that wakes me instantly....being that this was not nearly the first time there was no fear or panic... I felt hot, on fire inside and on my skin, so I rapidly kicked off my covers to allow my temperature to cool while I sat up and drank from a large glass of cool water to further cool me....maybe I would use the lotion beside my bed too to cool my hands and arms further....my neck hurts and I feel pressure in my head and face....now there is the frustration left as now I wondered if i could ever get back to sleep... I piled up the many pillows to allow me to sleep sit in a more comfortable position which maybe would also help me to breath easier....I finally fall asleep.... a few hours later I awake again....something is bothering me....it is pain....in my hip and neck I hurt and I try to adjust position again and get comfortable maybe I will be lucky enough to go right back to sleep....I do for a few moments but now I am not sleeping deeply enough not to feel the pain....in an hour or so I give up and go for some tylenol as I am beginning to feel pain in my jaw and face...I wonder is it the inflammation or is it from the clinching of my teeth in frustration of another not so perfect night.....

Of coarse I could go on about the morning...but i won't as this post is too long already, but don't you think it would be a mind blowing way for not only us to understand but our family and firends too...our symptoms, and struggles, of a day in the life... and so much less mind numbing that medical journals....just a thought Sandra

Hi sandra,

I too have been plauged by so many of the things you are. I sleep alot, can't get enough rest right now. Then all the sudden it's the opposite CAN'T SLEEP at all. The jaw pain, shoulder pain SWOLLEN feet and hands, HEAT in body usually hands and feet sometimes arms and legs, of which I have literally slept on ice bags for. the chest/rib pain is excrutiating at times and I have had to sleep propped up on pillows sometimes for months. Last time it was 21 mo. It was a living nightmere. I am having vision problems and it started before I started the plaquinel. I have muscle twitches in the oddest places. My brain can't seem to communicate with my mouth. I know what I want to say but it never comes out right, and can't remember much, or can't make simple decisions, like whats for dinner? or driving is this where I need to turn? All of this stuff going on at once. SUCKS:unsure: I'm sure there more but I can't remember... lol!!
I am so glad I found this forum, it's helpful knowing you're not alone! And that other people are having the odd strange symptoms. I really feel for you. I think we all do.

Hang in there Sandra! It really SUCKS but thats the day in the life of a Loopie! At least here we don't feel so alone. I love this forum! still new to it but getting the hang of it.

Take care,
Jen

mountaindreamer
09-13-2009, 06:08 PM
hi bunnie,i have a perfect solution to the heavy covers on your feet...i have one, and love it, but it doesn't fit on my present bed.i do not know the name of it, but you get it from your local medical supply store. It is a U-shaped bracket that sits at the foot of your bed, and fits between mattress and box springs. The top part of the u provides a shelf for your covers to lay over....this puts your feet under a "tent-like" contraption, and keeps the covers off of you....it is truly great and not expensive.