Lupus

Tuesday, December 6, 2011

The positive side

     Being positive while feeling so ill and debilitated can be extremely hard, especially when it can cause depression.  Lupus can cause depression and so can certain medications prescribed for treating it, like prednisone for instance.  However, there are many antidepressants out today and some are even FDA approved for reducing pain associated with chronic illnesses.  I am not on any antidepressants, but I know many people with SLE and other chronic diseases that have been saved emotionally and physically by using these medications.  I tried Cymbalta for pain because it was FDA approved to help the pain associated with rheumatic diseases, but I had a really bad reaction to it and after the second day I had to stop my low dose.  I may ask to try another medication to help for pain and I have heard some wonderful things.

     I try to be a positive person, of course it is not always easy especially when tapering down on prednisone, but normally I  feel very thankful for my life.  Having a disease like SLE makes people really appreciate things that a normal healthy person would take for granted.  For example, being able to play tag with your children, someone healthy would think this is something easy and simple, a small task.  When someone has lupus a game of tag can seem impossible and there are many things to consider before playing the game.  First we must consider our pain level, are we able to move around, can we run?  Another issues to think about is whether we will be needing special clothing, or umbrella, and sunblock.  The sun can trigger flares and worsen lupus symptoms, and can make us feel horrible, not to mention a lovely rash or rashes that can pop up.  When is our next dose of medication, and can we be in the sun while on the medication?  Do we need to eat with that medication?  Also, will we need nausea medication on hand because this kind of activity may make us feel sick to our stomach?  There are so many thoughts that must go into a simple task, that having the ability to do such a task seems incredible.  Therefore, when we can actually play tag with our children we are elated!  Small things are big blessings!

     There are so many things I am blessed with in life and I try to focus on those things most days.  Sometimes feeling lucky can seem hard especially when you get bad news from a doctor.  It is okay to feel sad or defeated at times, lupus is not easy to live with, but trying to be thankful for the things we can do and not dwell on the things we cannot do, can be possible.  Unfortunately, there is no miracle drug or cure for the joint pain, swelling, ulcers, fevers, rashes, depression, or any other lupus symptoms, but we still can be thankful for small happy happenings.  A day in less pain is always a blessing, or a day when you have a bit more energy, and can actually wash, dry and put away clothes all in the same day!  When you help your son or daughter with their math homework, because today your brain fog is not as bad as usual.  Or you can go out to dinner and see a play and be able to get out of bed the next day!  These are all things a healthy person would never have to think twice about doing but some one with lupus feels so blessed when one simple task can be achieved.


Lupus International
 http://www.lupusinternational.com/Living-With-Lupus/Overview.aspx
 
Now What?
Whether you're newly diagnosed or a long-time lupus patient, there are important things you can do to contribute to your overall wellness. Aside from establishing a good working relationship with your doctor and having a solid understanding of the disease, first and foremost you can maintain a positive attitude. Yes, some days that's easier to accomplish than others, but a positive outlook and forward-thinking attitude is a huge leap towards managing your wellness.

Your attitude plays a key role in how your body feels because stress, anxiety and negative thoughts impact your overall state of wellness. Choosing a positive attitude and making a commitment to enhance your quality of life will ultimately help you cope with the challenges that can go hand-in-hand with lupus.

Equally important is to understand and accept that until there is a cure, lupus is a part of your life that requires continuous attention. By respecting the illness, establishing realistic lifestyle goals,
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and making a commitment to carry them out, you will have a greater sense of balance and a proactive approach to your wellness. You can control how you cope with lupus rather than be controlled by the disease.

You Don't Look Sick

Lupus patients hear that all the time. Lupus is the "look good, feel bad" disease, so many times, friends, family or colleagues don't even realize you are not feeling well. That means making lifestyle adjustments and altering your daily and weekly routines and commitments is in order. And, it could mean speaking up and asking for assistance in accomplishing tasks that might normally be easy for you to handle.

Consider short cuts in your daily activities. Plan "must do" chores and activities before you over do it with less-than-necessary energy-zapping tasks. Obtain household or child-care help if possible. And, learn to prioritize commitments so you are able to enjoy your most meaningful ones. Proactively making these types of adjustments will help ensure you are not pushing yourself too hard today only to pay the price with increased fatigue later.

http://www.niams.nih.gov/Health_Info/Lupus/Lupus_Guide/chppis1.asp 
Caring for Yourself
  • Learn as much about lupus as possible.
  • Understand that you will experience a variety of emotions, particularly when you are first diagnosed and as you adjust to the fact that you have lupus.
  • Adopt a positive attitude.
  • Evaluate your personal strengths and resources, such as family, friends, coworkers, and community ties.
  • Determine what your needs are, then make a plan to address them.
  • Don’t be afraid to set goals for yourself, but be flexible.
  • Learn how to manage the physical aspects of your disease and the effects they have on other areas of your life.
  • Learn to deal with stressful situations, because stress and anxiety can make your lupus symptoms worse.
  • Learn to talk with your health care team, family, friends, and coworkers about lupus and the effect it has on your life.
  • Don’t be afraid to seek help for yourself or your family.
  • Remember that living well with lupus is possible. It is important that you take control of your illness and not allow it to take control of you. Adopting a positive attitude and striving to be happy can make a big difference in the quality of your life and that of your family and friends.

http://www.everydayhealth.com/lupus/lupus-emotional-stress-and-depression.aspx 
How to Stay Emotionally Healthy With Lupus
The following factors can help you maintain your emotional well-being:
  • Exercise regularly and eat a healthy diet.
  • Know your limits emotionally and physically
  • Make sure to get enough rest.
  • Join a lupus support group.
  • Be good to yourself. Have fun. Do something that makes you laugh.
  • Try mind/body exercises that can help you relax, like meditation. Several recent studies have shown that meditation can reduce stress and stress-induced immune responses.
If you have a chronic and unpredictable disease like lupus, you are going to have stress and there will be emotional ups and downs. It may be hard at times to know if depression is related to lupus fog or something more serious. If you are struggling with emotional issues you need to let people know. Emotional stress can make lupus worse and depression can be treated successfully. Make sure you know the warning signs of depression, and don’t hesitate to ask for help when you need it.

4 comments:

  1. hello. :) i just read your blog.
    i really liked it! it really pictures everything i have imagined! i know it's hard to have a positive attitude in times when we are struggling on something specially lupies like us. but then, changing the negative feeling to a positive one eases the stress and may somehow makes as better. :) even pretending isn't a good thing but it is, in our part. i wish i could write something like this too. i love to write. but ever since i was diagnosed to have SLE. things stay only in my thoughts, i cannot put them in words anymore.
    anyways, me and my friends thought of something that we want to do for people who are very depressed or someone to lean on. may this plan of ours be a help to the community too.

    have a good day girl! :) FTW!!!

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  2. Xha,

    Thank you for your kind comments. I know it can be hard to stay positive especially when you feel bad, but I also think us lupies are thankful for all the little things. I hope your friends and you help people as well. I hope you find your written words soon. Best wishes and gentle hugs.
    P.S. I just saw this sorry it took a while to get back to you. xo

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  3. The information which you have provided is very good. It is very useful who is looking for Joint Pain Relief.

    ReplyDelete
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