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Posted 9/19/2007 12:46 AM (GMT 0)

I have a question.  Is feeling like you don't want to do anything part of having Lupus or UCTD?  I also have a very hard time with follow-through on things.  For example, if I am told by one doctor to schedule with another specialist for an appointment, I write myself a note to do so, but when the time comes to actually do it I can't seem to motivate myself to make the call.  I am not depressed, I've been sick for too long for that - been there, done that, got over it.  So what happened to my motivation?

Thanks,

Posted 9/19/2007 1:24 AM (GMT 0)
Razzle, I know exactly what you are talking about. I had the same lethargic, unmotivated reality and it took over two years before I actually came out of it. I didn't even want to talk to people because it wore me out to explain what I needed or what was wrong with me. The fatigue of lupus is quite debilitating.

I would have my rheumy take another look at your meds. Do you take anything to sleep? Even if you think you do not have sleep problems you could still not be sleeping well due to pain or something. Also, maybe it is time to rethink the use of an antidepressant or a change of your anti-d if you are already taking one.

I have noticed that taking prednisone really helped rev up my energy levels. Methotrexate really added to my energy, too.

Good Luck - Prayers!
Posted 9/19/2007 2:31 AM (GMT 0)
I think that's pretty normal behavior. (At least I hope so, since I act the same way.) Something is just really difficult in doing more and more follow-up care, esp. if I feel somewhat ok otherwise. If the motivation is lacking for everything, you may be having some fatigue that maybe could be addressed by making sure you get deep restorative sleep (I get mine w/sleep aids) or you may be having chronic disease-promoted depression -- it feels different than the situational-oh-my-gosh-I-have-lupus depression. Take care,
Posted 9/19/2007 4:49 AM (GMT 0)
Thanks for the feedback - glad to know I'm not the only one who's felt this way. I've been tested for depression and don't have it, so I know that's not the issue. The sleep is bad - I don't sleep at night unless I take something to make myself sleep. I don't seem to do well with sleeping pills, but have found either Benadryl or Melatonin to be helpful. But I still feel unmotivated, lethargic, and deeply fatigued even with what feels like good sleep from taking something to help me get to sleep. I think I need to find a different Rheumatologist - I don't think the one I saw was very savvy about Lupus. How do I find someone who knows more about Lupus and other Connective Tissue Disorders?

Thanks,
Posted 9/19/2007 10:04 AM (GMT 0)
Hi Razzle, There is a link for a Lupus Chapter locater at the end of my signature. If you find your nearest Chapter and call them or email them, they'll send you a list of docs in your area. Its not a guarantee that they'll be great docs, but they have at least indicated to the Lupus Foundation that they WANT lupus patients. There really are docs who don't. One other GREAT way to find a good rheumy is to ask your local Lupus Chapter where the nearest support group meeting is held. Attend a meeting and ASK the other lupans who they use. Then ask if they LIKE their rheumy, etc. You'll have a small pool of lupans to interview about their doctors. I found a great doc that way . . . but unfortunately, he no longer accepts my insurance. I finally found a new rheumy, but I have to wait until Nov 15 to get in for my first appt. So be prepared to wait a couple months or more to see anyone who is good. I see that you are anemic. That sure does cut into your energy and clear thinking in a big way . . . so would the malabsorption/malnutrition issues. I hope the anemia is being controlled . . .I do see that you take B12. I have taken to using a steno notebook to write down "to do" list each day. It is amazing how many things we forget to take care of. I keep the notebook with me when I sit at the computer, so that when I think of things that need doing, I can jot it down. There is something therapeutic, too about checking off the list. Blessings!
Posted 9/19/2007 2:36 PM (GMT 0)
I understand Razzle. I get the same way. I also have a hard time with back to back doctor appointments. The anxiety of a doctor wanted to run tests is awful to me although most of them aren't bad, I just hate being poked and prodded. I have been keeping my appointments to myself lately too and not even telling anyone about them anymore, sometimes not even to my husband. Its a depressing feeling to have to go the see specialist after specialist all the time. (((HUGS)))
Posted 9/19/2007 4:06 PM (GMT 0)
Razzel - I seem to go in and out of those moods where enough is enough. I never want to accept my illness. I know what I have and I know I need to keep on top of it, but just handling the basics and the emergencies are enough for me to deal with. I do procrastinate a lot and my priorities get screwed up at times, but I do the best I can with a multitude of things I am now in the position to deal with. I am constantly adapting to new changes as the disease progresses and changes. One knows that alone is enough to contend with. I am a single mother with two children that have special needs and sometimes I have to be last on the list of nightmares to deal with. Sometimes I get stubborn and just plain don't want to do it. I didn't ask for this so don't ask me to do anything about it. I think it is all a process of denial and acceptance and it comes in spurts. Our minds and bodies can only handle so much at once. We are humans with a limited capacity to cope and adapt to our circumstances.

I liken it to a boxing match. After getting pounded so many times, it is hard to get up and keep fighting some days. Can't give up though. Life is sometimes unfair like that. But we all have normal responses to it. Who likes getting beat up all the time? Not me. Thanks but no thanks. Sometimes I feel that way towards having Lupus...thanks, but no thanks. Seems normal enough to me - Best wishes - Kristin
Posted 9/19/2007 4:23 PM (GMT 0)
Razzle,

Aren't these folks wonderful! Just reading all their replies to your posts makes me remember what I love about this forum.

I really identify with what you describe and think that two things get in the way of my following through with business. First is the extreme fatigue that goes along with AI diseases. Second is the brain fog that hits me from time to time, and sometimes just decides to settle in and not leave. Some days, for instance, it's easy for me to write in this forum but others it's just too overwhelming and I can't get motivated enough to post. As others have said, meds can contribute to our fatigue, but since my fatigue comes and goes just like my brain fog does, I think it's a result of the disease.

Acceptance has been my greatest ally. It makes me appreciate the good times and just accept the bad.

I'm glad you wrote about this because it something most of us deal with. You aren't alone.

(((((hugs)))))

Pat
Posted 9/19/2007 7:35 PM (GMT 0)
Procrastination is not a symptom of lupus or uctd.  However, depression is common and procrastination is part of not wanting or being able to face even small tasks and challenges.  Or just not wanting to find out anything else bad.  I had the same problems but tried to focus all my energy on getting better and making appointments, etc, was part of that effort even though I feared each one would, and often did, find something else wrong with me.

It might help to start making a daily to do list and prioritize your tasks.  Do the most important one first so if you run out of energy or motivation at least you have accomplished the most important tasks.

Just a suggestion.

Hope you feel better.  Being sick sucks but I try to think about getting better and also enjoying each day. 

Bill

Posted 9/19/2007 9:56 PM (GMT 0)
Bill,

Your optimism and determination are pretty inspiring. I think it's hard to have determination without optimism, but I seem to be stuck at the optimism stage. Pass some of that determination along the airwaves to me, please.

Pat
Posted 9/19/2007 10:20 PM (GMT 0)

Pat

I wish I could distill it.  All I know is that I was born with it but remaining persistent has been very difficult.  As you might recall I was a quadriplegic from polymyositis just 20 months ago and now am completely independent and trying to regain my strength.  I play many mind games with myself to keep myself moving forward but the journey is an uneven one.  I must constantly remind myself of all those things I want to do again. 

My story was just posted on www.marianjoy.org and can be found under patient stories.  Maybe there is a kernal of help in it.  Marianjoy is one of the best rehabilitation hospitals anywhere and that is where I spent 5 weeks in and 8 weeks out.  Today I volunteer there. 

Sometimes I just don't know where I get my determination.  My wife claims I am just stubborn....and a good thing.  It is probably my Scotch heritage....just kidding of course.

Do what you can...but just keep on doing it.  But set some goals first....achievable ones...and ultimate ones that you hope to achieve.  That way you can see success but also see where you want to go ultimately.

Bill

Posted 9/19/2007 11:07 PM (GMT 0)
Bill,

I appreciate your post, and yes I recognize that I do need to consider the possibility of depression despite tests for depression saying I'm not depressed. To me, depression is a loss of hope, and I have not lost hope at all. I also don't feel it's procrastination. It is simply a feeling of I don't feel like doing anything. Could this be from chronic insomnia? Absolutely, and likely is partly from that. But I feel this way whether or not I get what feels like a really good night's sleep, so I'm sure there are other issues contributing. The Spoon Theory fits pretty well.

Everyone,

Yes, I've tried the list/prioritizing thing and don't seem to make headway on those lists because of the "don't want to do stuff" feelings. Sometimes I do force myself to get things done, but it is very difficult. Thanks everyone for chiming in on this - glad to see it's not unique to me even though it really is a difficult thing to deal with.

Take care,
Posted 9/20/2007 2:37 AM (GMT 0)
Razzle . . . the depression thing really does fit. I'm not sure what "test" you are talking about , but the type of depression that most always eventually comes about with chronic illness is not about hope or loss of hope, but the loss of essential brain chemicals that allow one part of your brain to talk to the other . . . kind of like phone wires working properly or being short circuited. If you look at people's meds here, you will almost always see an anti-d. The chemicals your brain needs can be obtained from exercise (we are deprived), from length of daylight (if you sleep in the the morning because you can't sleep at night, you will end up deprived). The sense of well being that comes from the proper amounts of brain chemicals is a really big deal. It is not a sign of weakness IF that is what the problem is . . . I argued about "not being depressed" for years until a doctor finally convinced me that it wasn't about being unhappy with my life, it was about the neurotransmitters in the brain firing off correctly. I agreed to give the anti-d a try and was absolutely amazed at the change in my quality of life. I did try about three different meds to find the best one for me and it was a HUGE improvement in my life and the life of my children and husband. Not saying that this absolutely your problem . . . but it sure sounds like a big possibility. Blessings!
Posted 9/20/2007 6:22 AM (GMT 0)
I was evaluated by a Psychologist. He administered several tests, and stated that I was not depressed.

A few years ago, I was given antidepressants for severe chronic pain (I don't have the pain any more) and got intolerable side-effects from them (severe headaches, nausea, vomiting, dizziness, and the pain I was in when on them got worse).

Thanks,
Posted 9/20/2007 8:20 PM (GMT 0)
Sorry Razzle that the anti-d you tried was not helpful It is so frustrating when we can't get help for our symptoms. I know I had to try three or four different ones to ditch the side affects, but I was SO glad when I found the right one. I also had seen a psychologist who said that I was not emotionally depressed . . . but that I did need some help replacing the insufficient brain chemicals to function normally. . . I hope someone has some other ideas for you . . . it is so hard living with some of these issues. Blessings!
Posted 9/20/2007 11:47 PM (GMT 0)
Hi Razzle:

It's hard not to become depressed when we are chronically ill all the time. I've had lupus for 19 years now and the last time I saw a psychologist according to his tests I wasn't clinically depressed. I appreciate that you feel that you don't have this either.

However, I have to say during that time I was adamant I wasn't depressed and everything was fine, except it wasn't. I had no desire to talk with ppl do the things that I needed to get done. I didn't feel hopeless at that time. I can see now though that I was depressed to a certain extent. Being sick all the time is draining on us and those around us. I know how frustrating it is that I can accomplish things like I need to. Now that my situation has changed and I do feel hopeless because of my MDS. I can admit to that I'm suffering with bouts of depression and I'm not ashamed of it. If I were to go back to that same psychologist he'd say I'm very depressed. I can't accomplish anything anymore. I spend my days just waiting for the other shoe to drop.

I would suggest try talking to someone who works with ppl who are chronically ill. It's not easy being us, this is hard work. Like Rosie said your anemia could be a real big part of why you feel the way you do. I've got anemia so bad that I require blood transfusions every 8 weeks or so. Without getting my alloted supply of blood I'd never make it. Maybe you should consider having your doctor look at your anemia again. It's just a thought, I hope you begin to feel better real soon. Know that you're not alone in this and we're here for you.

Best of luck to you,
Barbara
Posted 9/21/2007 12:54 AM (GMT 0)

Bill,

Your story was very inspiring. Thanks for sharing it with us.

Sandy

Posted 9/21/2007 1:02 AM (GMT 0)
Hi again,

I agree the Anemia probably has a lot to do with how I feel. I've been anemic intermittantly for years, and it's probably just taken its toll on my energy levels in general. I've tried a few different types of iron pills but had to stop taking them because of side-effects (severe constipation, eye pain, nausea). I did find one iron pill that didn't cause problems, but the company has discontinued it and I haven't been able to find a suitable replacement yet (still searching though). I've got a doctor appointment next week, so we'll see what comes of that.

Barbara, sorry about your MDS - Is that Myelodysplastic Syndrome? If so, that's what the doctors thougth I might have had at one point because of some very strange blood tests 2 years ago. But the blood smear and bone marrow biopsy were normal so they said I didn't have it. Also, I've read some info that suggests that Vitamin B12 may help with Bell's Palsy - you might want to look into that.

Thanks for your support. Take care,
Posted 9/21/2007 1:33 PM (GMT 0)
Hi Razzle:

Yes, it's Myelodysplastic syndrome, all four of my bone marrow biopsies have come back positive for it. I've been on B12 shots for over a year now, and it still doesn't help with my anemia. It's the bone marrow not making enough red blood cells for me to sustain my body. I haven't had a case of Bell's Palsy in a really long time like 15 yrs ago. I had my first case when I was only 7, then I had it again when I was 14, 21, and 27. It's really rare that ppl get it more than once and I've had it on both sides of my face which is even stranger still.

As far as my MDS is concerned according to my oncologist, which I've had second and third opinions. Because of my age my MDS will worsen until I'm terminal and I will need a bone marrow transplant to attempt to save my life. Since I've got lupus/fibro/RA in addition to my MDS it complicates things. I sit around and wait for the other shoe to drop, I have to say I'm anxious to get on with it. I'm willing to attempt the transplant NOW, but my doctors aren't willing to do that at this time. They say the risks out weigh the possible benefit at this time. They said to picture a scale with plates on the arms at the sides. My bone marrow failing on one side and the risks on the other side. When the two plates get almost even then it's worth taking the risk. So I'm to just continue on status quo for now. I'm glad that you don't have it, the fatigue is unbelievable I sleep close to 20 hours a day. I hope that you begin to feel better real soon.

Take care,
Barbara
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