Tips On Being Sick

by Kathleen Blose

Kathleen Blose has both POTS and Parkinson’s disease. The following are tips that have helped her deal with her illnesses.

You Are Going to Have Rough Days

No matter how strong you want to be, show yourself to be or even actually are, you are going to have rough days. They might be physical (feeling so sick and tired that you cannot get out of bed) or emotional (days you just want to explode-- when you are tired of being strong or when you want to quit being sick) or both.

Well, that's ok. Give yourself permission to be sick, for an hour or two or even a day or two. What I mean is, if you're going to feel sick, you might as well “enjoy” it. Don't let yourself play the guilt game or the "I should be" game (I should be stronger...I should be making dinner). Sometimes you just need to let yourself be sick. By relaxing and resting, you will be able to enjoy your life more…and sooner.

It is Hard to be Strong

If you are like me, you are strong for everybody else no matter how you feel. It's just the natural thing to do. You protect them from the pain you feel. Finding “safe places” where I can let out my feelings has helped.

Sometimes it is Not the Sickness but Just Life

If a day feels worse than others, you need to look at what you did that day. Did you do a lot? Do you have a cold? Or are you just having a rough day? Are you feeling more stress? These factors can all affect how you feel. Know your limits, and your body-- then you will know why one day might be worse than another. You might even be able to predict rough days.

You Cannot Do Everything

To have energy for your family, you might have to lessen your load for a while. It takes some of the stress off and really does make life at this difficult time easier and less stressful, making life more enjoyable for you.

Nobody Really Understands What You Are Going Through

What you feel is what you feel. You will get a lot of support but nobody understands what you are feeling inside. Whatever you feel, you have the right to feel it. Sometimes you will feel strong, sometimes not, but be careful because I found that painful emotions were harder to fight than being in physical pain. Also, if I was very emotional one day, I would have to stop and look at why. Usually it was because I overdid it and I was really tired.

You Might Become so Strong that when People See You they will Say You Look Great--You Must Be Feeling Fine. They are Misunderstanding that a Good Attitude and Being Strong Does Not Mean You are Feeling Well

This might sound silly, but sometimes it would bug me, especially if it was a doctor who would mistake my good attitude for how I was feeling. If I lived the way I felt, my life would be too depressing. I think you will understand this as time goes on.

Be Honest With the Kids

Don't scare them, but be honest. If you don't feel well, tell them you have to rest. My kids are so used to me resting, they tease me now. Explain what they can understand and talk openly about the process. Ask them about their feelings and if they have any questions. You will find they usually are stronger than you think. And they help keep life going like usual. Do what you feel is right, but understanding the process might take the fear out of what they are thinking. I don't focus on the future, but they understand what is going on with me now. They are 12 and 15 and have lived with my being sick for most of their life. They used to introduce me to their friends, "This is my mom. She sometimes shakes because she has Parkinson’s disease."

You Can Still Enjoy Life, Even if it is Not the Way You Are Used to Enjoying it

Sometimes you have to give yourself some time to mourn your other life. But it does not mean that you cannot make a new life that is enjoyable with things that you can do now. It does take time to find this attitude because you always think of the things you used to be able to do. I think of it as living in the present and not in the past. I live with what I can do now, not with what I could do then. You can still be happy even if you are not feeling well. You might have to enjoy it from a hospital bed or lying on the couch instead of going out, but there is nothing that says you have to be miserable. Having a good sense of humor has done wonders for me. Laughing at my illnesses and myself helps too. And laughing at the doctors becomes a survival technique; otherwise they can drive you crazy.

Psychologists Can Be Good

Seeing a psychologist doesn't mean you are depressed or weak. It is just a good source of support. It gives you one place where you are allowed to be weak. Being in a supportive place was a luxury I didn’t allow myself, and that was stressful. Remember that meds and illness can cause depression. Using a psychologist is a good way to understand this kind of issue.

Medication and What's Happening Can Cause Depression and Lack of Concentration

I believe medication and illness can cause mental changes like depression and lack of concentration. First thing to remember: there is no crime in being depressed. Second thing, it could be a side affect of your medication. Something else to be aware of when you can’t quite figure out what is going on.

Support Groups, Web Pages and Chat Rooms Are a Good Source of Info and Support

Talking to people that have gone through what you are going through is one of the best ways to keep informed. Being informed takes the surprises and fear out of what is happening.

Writing Your Feelings in a Journal, or Poems, or Drawing is a Good Way to Let Out Feelings

Try it. You might be surprised.

Each Step Seems Impossible Until You Understand and Know What is Going on. Somehow Your Mind and Body Becomes Strong Enough to Handle it

You will be surprised at how much you can handle.

Believe in Your Faith

This is most important.

You Know Your Body. Trust Yourself and Make the Doctors Work With You.

If you know something is wrong or if you have questions let them know. Keep a log.

That's all for now. I hope it helps. I learned this from experience. Use what you need and throw away the rest.

Dysautonomia News is a quarterly publication of the Dysautonomia Information Network.
Subscribe to Dysautonomia News at www.dinet.org/join.htm