Personal and Private Meetings

Is something hidden in your closet? Or do you need help decluttering it?

Everyone keeps things hidden in the back of their closet; I used to, but not anymore. If you were seeing a therapist/psychiatrist, would you tell? Or are you someone who thinks you don’t need one or can work things out on your own?

I am an open person with an open mind, mouth, ears. and eyes.  This is how I learn.  I’m also an open book and incredibly honest.  I’ve been this way for as long as I can remember. If you have read my new release Managing MS, you found this out because of many personal stories shared, especially about some taboo subjects.

People learn from other people. My long life of 67 years (42 w/ MS) has given me constant reason to expose some of my private self.  By doing so, I can bring awareness and help to others even if it’s in the smallest way.

This week I had my three-month appointment with my psychiatrist. Because of current laws, this is required for me in order to get a prescription for sleeping pills. Initially. I was annoyed that I had to add a regular psychiatrist appointment to my already busy schedule for the sole purpose of pills. But I’ve come to look forward to these appointments for a variety of reasons.  She’s an anonymous, unbiased person who listens to me, talks with me, and stands by if I need a lifeline.

I’m a great listener; I’ve been told many times from many people over many years from those who talked with me in confidence. But there are times when Debbie needs a Debbie. I don’t like feeling alone about some things.

In the past, I’ve had short periods of behavioral therapy to work through some major problems life threw at me. Family deaths, an MS dx, disability and job loss to name a few. I learned coping tools from these therapies, through lifelong support groups and other instruction like Dialectical Behavior Therapy (DBT). What these regular appointments do is keep me on track with my own behavior. Sort of like how a regular performance review or staff meeting keeps you on track with your job.

My life lately has been chaotic, overwhelming, and stressful.  Knowing that this appointment was coming up this week steered me to hunker down and put my honest thoughts on paper. What’s my status, and what could I do? I wasn’t handling relationships well; I was oversensitive; I was angry that too many things in daily life were so difficult to do…  The world is changing so fast, I can’t keep up, and I felt like I was in quicksand. My cluttered closet needed organized.

I felt prepared when the appointment began and shared my situation. No, I wasn’t depressed; I had high anxiety and for me, there is a difference. No, I don’t want anything for my anxiety; it’s my own fault and I can fix that.  I had taken my DBT manual off the shelf to review. Yes–“Use more Teflon–Don’t let things stick.” “Let go of toxic people and things.”  “Set boundaries and say ‘no’.”  “Don’t ‘should’ yourself or others.” “Change what you can and accept what you can’t.”

Yes—accept that I AM older and have an advanced chronic illness.  A good friend recently said I was Wonder Woman, but that has backfired on me because I had set the bar too high for my own and others’ expectations of me.  Yes—don’t cheat yourself from retirement. Yes– watch inspirational documentaries and reading novels every afternoon while lying down to declutter the busy brain.

I can’t change the world, others, or my age; however, I can change how I deal with it. Personal, private meetings have value when you are comfortable with the person facing you. Validation and sincere feedback are important especially when it is unbiased and anonymous.

Airing out my closet and organizing it from time to time lessens my internal stress and recharges my batteries.

So, how is your closet?

 

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 

www.DebbieMS.com

 

 

 

Making Decisions when Managing MS

In many online MS discussion groups, participants discuss what is the best thing to do or take for MS, and what is “bunk.” Subjects range from treatments, diet, and stress to exercise, experimental drugs and alternative medicine.

If one seeks information from MS organizations or medical websites, the standard directive is “ask your doctor.” But realistically, if you ask your doctor, most will recommend drugs. Drugs for symptoms, for relapses, and long-term DMD treatments. There are two reasons for this:

1. What else can they do for you in the fifteen minutes that they see you? They can’t cure you but they will want to make you feel better and try to prevent you from getting worse. In addition, doctors certainly don’t have the time to educate you or answer a lot of questions. They will refer you instead to physical/occupational therapy, pain clinics, etc.

2. Relative to prescribing drugs, doctors depend on the scientific evidence of these substances. They will send you off with scripts for tests initially and ongoing. Relative to body wellness for MS, while they would agree that exercise and proper diet is good for you, they will not specifically address these topics because there has not been enough scientific evidence done to determine their positive/negative impact on MS. So again, the patient is referred elsewhere.

Everyone’s body and MS are unique, and everyone responds differently to anything you take or do to your body. No two cases are alike in response to these actions just like no two cases of MS are alike. While some things work for some, often they don’t work for others.

So, when you need to make a decision regarding something about your MS and are stuck, what should you do?

Personally, I practice common-sense, logic, and balance for both my body’s wellness and medications I choose to use. I ask myself these questions:

• Does it make me feel better?

• What are the short/long term risks of doing or not doing something?

• Do the benefits outweigh the risks that I am willing to take?

• Am I doing everything I can possibly do to prevent infections, sickness, falls…?

• Did I gather enough research from reliable sources to help me make my decision?

There is no question that proper diet, exercise, sleep, stress management, weight control, etc. are essential for vital body functions and helping to manage/control MS. This is true for a person without MS, but especially important for a MS patient to help managing/controlling their disease.

I am open-minded and listen to others in online discussions as part of my personal research for making my own decisions about managing my MS. I dig through the internet for studies and statistics. And I consult with doctors and other health care professionals for their insights; but a health professional is not my only source of action or fact-finding, giving him/her a carte blanche.

Then I document and keep journals of what I do and what the effects are.

There are no absolute rights or wrongs. I know my body well, but I leave myself open to trying something new if I feel it is safe and I have nothing to lose by trying. Like everyone else with MS, I want to feel better and get better.

One rule I follow for myself with regard to making any decisions about anything: “When in doubt—don’t!” I can always revisit the situation later.

Ultimately, decisions are made by me. I only have one body and am the one who has to live with it.

www.DebbieMS.com
Author, MS Counselor, Living with MS

MS Blogs

January 12, 2014

I am proud to announce that my MS Blog was selected for Neurology Now Magazine’s list of Patient Bloggers! http://journals.lww.com/neurologynow/Fulltext/2013/09060/Neurology_News__Having_Their_Say___Patient.16.aspx

Neurology Now Magazine:
December/January 2013 – Volume 9 – Issue 6 – p 14

Neurology News: Having Their Say: Patient Bloggers

“While your doctors can give you information and guidance about your condition, they’re not always the best source for practical advice. Patient bloggers offer that in spades as they chronicle their own journey with neurologic disease—sometimes funny, sometimes painful, but above all else, familiar. We tried to find blogs that are well-written, honest, and responsible in the way they handle medical information.”

Neurology Now is sponsored by the American Academy of Neurology and the American Brain Foundation. Free for subscribers, information is provided about various neurological problems in their publications. Included in each of their issues are also stories written about individuals—both well-known and unknown—who are dealing with a disorder/disease successfully. Here is a link to check it out http://patients.aan.com/index.cfm?axon=redirect&&path=/go/neurologynow  .

Also check out my 57 articles within this blog at the bottom of this blog page, as well as my website that contains much info about multiple sclerosis www.DebbieMS.com .

Best-

Debbie
Managing MS, Straight Talk…