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Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 5/29/2013 12:45 AM (GMT -6)   
So as many of you know I just got dx with UCTD which according to my doctor is like Lupus without organ involvement. For years now some days I would wake up and not feel like going to work. I would not be able to put into words why I felt bad. But it was like even though I had been asleep all night I had not slept at all. And of course you cannot tell people you aren't coming to work because you are too tired. Plus it was not just tired. It was like I was coming down sick but I never got sick. An all over ache. Muscle pains, joint pains.

These days were an endless argument with my family. They thought I was being lazy. Since I could not explain I could not defend myself other than saying I am really sick. I admit I do miss tons of work. At most jobs I would be fired but my job is pretty safe. Anyway I feel like since I have gotten this dx I can say, see I was not making it up. I was missing work for legitimate reasons. There is a problem. Most normal people cannot sleep 16 hours and still wake up tired. My husband says he believes me but I still do not think he gets it.

Can some of you, if you feel like sharing, tell me your stories about needing extra time or to miss work or accommodations or basically anything you think would help my husband understand that I am not the only person who sometimes just cannot get out of bed. That I am not just lazy. He has really come around since January because it used to be a huge fight every time I missed and now he will not get mad most of the time. But I still just want him to see that I am not just weak willed. Besides the UCTD I have several other medical problems. Some are listed in my signature but not all.

Anyway thank you for listening to me. Sorry for the long post.
30 female. Sherrie, 2007 diagnosed with UC, also have Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/29/2013 2:00 AM (GMT -6)   
If my family would let me sleep I could sleep all day. The longest I've ever slept was from 12am-4pm and that was cut short because my niece woke me up and told me the time.
I still feel like I'm not getting enough rest though.
I drug myself to work everyday sick as a dog because it was terrible to get a sub in to cover for me. I even went home to change clothes (after having a severe stomach mishap on myself) and returned to give a 4hr test to my students. I was so sick!
I'm now on medical disability and applying for SSD.

My point is if you can work and still miss days without repercussions work as long as you want. But if you can't work then buy yourself some long term disability insurance and quit.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 5/29/2013 8:31 AM (GMT -6)   
Here is an article written by someone with Lupus that often helps family members understand. www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ Hope that helps!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 5/30/2013 10:19 PM (GMT -6)   
Thank you I do find that helpful. Do you guys feel the same way, especially those of you with UCTD? Is it hard to get to work every day? I know I am young and I need to fight to have a life but is it a struggle for you all like it says in the spoon theory? Also how do you find the motivation?

This may be TMI but since I was a child I was allowed to miss as much school as I wanted with no repercussions. I would fake sick and my mom would take me to the doctor and he would say sinus infection stay home a week. Some days I would wake up and tell my mom I did not feel like going for no reason and she was fine with that. Every year I missed more school days than was legal but the school got some kind of waiver because I made such good grades. There were never any consequences to missing. As an adult I have held down jobs and never been let go for missing too much. However if the boss at the job I am now was not so lenient I would have been fired long ago. So it is hard for me to force myself to go when I feel bad because there is really no reason to. We always some how find a way to pay the bills. I want to know how you guys find that motivation to not wallow. Thank you sorry for the long post.
30 female. Sherrie, 2007 diagnosed with UC, also have Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/31/2013 12:39 AM (GMT -6)   
My motivation was I had a job I loved dearly and hated to miss one single minute. It took my principal to look me in the eye and tell me he couldn't keep me anymore. Also the Vice principal took me aside personally and told me I really need to go on disability.
So here I am...not as sick as I was everyday, but too sick for anyone to want to hire.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 5/31/2013 7:45 AM (GMT -6)   
My motivation for a long time was that I loved my career - no husband, children, parents in the picture - plus had employees and contracts I needed to support.

Until I just got too sick to carry on -- which is when I finally got diagnosed and began (slowly) to feel better, then a long time worse, now finally fairly good again.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 5/31/2013 6:16 PM (GMT -6)   
Another huge fight about me missing work today. I do not get it. I do not know how I could explain any better how I feel.
30 female. Sherrie, 2007 diagnosed with UC, also have Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 6/2/2013 2:34 PM (GMT -6)   
Teddtlove

I can totally relate to feeling so sick and weak and not being able to make it to work. One bit of advice to protect you at work is getting your dr to put you on intermittent FMLA. He will stAte amt of hrs you can work. This has been a lifesaver for me. As an RN it is very difficult to be on my feet 10-12 hrs a day in addition to having to be up at 4am after many nights of only three hrs of sleep.
Currently at the end of my STD and returning to work next week. I pushed and pushed myself to work cause I like you had people who really don't understand any the End result were flare after flare. My dr wrote me back with hesitation, and he along with my husband want me looking for another nursing job less taxing. Rheumy says its putting too much strain on body causing major flare ups. I love my job, but I hate hurting like I was. For about three weeks I was barely able to take more than a few steps.
Do what you can, listen to yourself. You and only you know how you feel and what you can do. I know it sucks when even our own family questions us.
I have started reading the book "Sick And Tired of Feeling Sick And Tired". It's really insightful and it might make you understand a little bit better.
Wishing you the best! :-)
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