Friday, January 18, 2013

Stigma

The link below is a short article written for Psychology Today by "How to be Sick" author Toni Bernhard, J.D.

I love how personal and yet succinct this article is. Each time she reposts it I always go back and read it and it's always relevant.

http://www.psychologytoday.com/blog/turning-straw-gold/201104/the-stigma-chronic-fatigue-syndrome

 I've faced this myself, many times. Not so often with doctors because as someone without health insurance I don't actually get to go see doctors or to try new treatments. (I'm not going to go any farther with that because I am only frustrated and angry about it) But every time I try to explain to friends that I'm sick...or if a professor asks if there are any health problems that may interfere with my ability to do the work in class, yea, it comes up.

Sadly, I often recognize some inner shaming going on. It's almost like the disbelief and skepticism I see in another's eyes makes me question myself. I wonder if I'm really sick. (I'm blessed with some ability to have "normalcy" in that I work a job and go to school. It's not easy, of course, and the time when I'm not at work or not at school I'm in bed.) But sometimes I wonder, maybe I DO simply need more exercise, and what if I take an energy drink, yea....that will get me through a work out. And once I get through a few workouts then it will all be easier for me.

Right.

Then I remember that the last time I tried to work out I ended up in the worst relapse I've ever had and I still haven't recovered from it. (up until then it seems I was in a relapsing/remitting phase for approximately 12-15 years. Yea, I've been sick a long time) When I have activity outside of my envelope I get worse. My muscles don't work like everyone else's and pushing them only means I'll be in more pain and won't be able to continue with ADLs until I recover.

During social situations there is often the time where someone says, "We haven't seen you for a while, how come you don't get out more?" An honest question probably coming from a compassionate place....but for me it's a challenging one. I can't simply say, "I've been sick." because then they'll ask if I'm better now. And maybe this isn't someone that I want to share my whole health history with, maybe I'm feeling private that day, and so I take the cop out answer and dismissively say, "Oh, I've been really busy. You know how it is." Often that's the end of the conversations and I've escaped once again. If the person asking is someone I like, someone who maybe I think I'd like to spend time with sometime, I try the answer, "I have some challenges with chronic illness and sometimes it limits my activities." This feels more authentic to me, but I watch their reaction. Most don't know what to make of that so they withdraw and I shrug it off. But occasionally someone asks what the problem is. And then what the hell do I say. Casual conversation isn't really the place for a discussion like that. It's not really appropriate for me to "come out" about being sick. I can't describe the multi-symptom, complex, decades long illness in two sentences and feel authentic inside. I'll try saying I have M.E. but no one knows what that is and it only leads to more questions. But every time, no matter the situation, I find myself trying to avoid using the term "Chronic Fatigue Syndrome." Am I adding to the stigma? I don't know.

Thursday, January 17, 2013

Finally!!!!

I've been conditionally accepted to Cal State East Bay in Hayward for the fall 2013 quarter. I'm pretty excited. Sure, it's only a "conditional" acceptance, but that's only because they want to make sure that my transcripts actually say what I told then they would say in my application. And they do, so I'm not worried.

I'm already reviewing the two year department class schedule in an attempt to plan what classes I'll be able to take. There's three upper division outside-of-the-department classes I have to take to fulfill GE requirements, plus I need to take three semesters of a foreign language, probably Spanish. I feel a lot more confident about the foreign language requirement, and frankly, if I wasn't planning on grad school I wouldn't need it nor want it, but I need it and that's the end of it. Since I last tried to learn a foreign language, I've learned how to study, I've learned anatomy, physiology, and microbiology, I've learned chemistry, and I've had a lot more mathematics. Those are all languages, really, and Spanish will be no different. My transcripts are on the way. I've filed my FAFSA, and as soon as I receive my 1099 and a few more pieces of paper I'll be able to file my taxes and my FAFSA will be official. I need to look into CalGrants and finish up a scholarship application. In the meantime I have to research grad programs. One step at a time.

It feels AMAZING to be able to study what I absolutely LOVE!!!  I'm thrilled. Thank you.

Friday, January 11, 2013

What CFS/ME/FM Patients Want Well People to Know

http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=17792

This is a wonderful short article based on a survey of people with ME/CFS and FM (fibromyalgia) and it really rings true. I often feel dismissed, unheard, and unseen.



Personal Death Concepts


This is an assignment required for my psychology class which asked 10 specific questions such as why was I born, what is the meaning of death in general, do you feel fear or anxiety  over your own death, and does contemplating death case you to live differently, etc.  

Lauren Ide
PSY 156 Understanding Death and Dying
Professor Newell
Fall 2010

I believe that I was born to learn, to grow, to experience physical sensations, and to fulfill a purpose.  In my personal belief system my Spirit, my unique and perpetual essence, made a conscious choice to be born to my parents during this time and place in order to interact with specific people and to have specific experiences.   This belief extends to my understanding of the meaning of life in general: to have experiences, to gain knowledge and perspective, and to create.  I know that I am here to experience the rush of adrenaline-laced thrill, the agony of heart-wrenching grief, and the elation of new and lasting love.  Emotions and sensations don’t necessarily need to be understood only allowed and experienced.
During periods of introspection I have come to some understanding of my life’s purpose.  With the above stated belief of experience and a general meaning of life, I also believe it is my responsibility to seek specific experiences that call to me as well as to peacefully allow experiences that are out of my control.  I have gained an awareness of the personal satisfaction I receive when I am in service to my concept of higher power and to others.  Helping others by creating a sense of safety, mutual understanding, and kindness fills my heart with joy.  With practice I have also learned that I am also fulfilled when I create a similar healing environment for myself. I know that along with life’s purpose to simply BE, it is my path to engage in compassionate service to God, Goddess, and Universe.
Death is a transition to a difference plane of existence.  It is, and that is it’s meaning.  It is easy to see examples of transition in the world around us: winter giving way to the new life of spring is just as important to the seasonal year as the apparent “death” of vegetation during the dark winter months.  Although many who find death uncomfortable may often misunderstand this idea, death is a normal and healthy consequence of life.  The Spirit’s experience of death and the transition to the next plane is an important part of the collection of experiences in this life.
While I believe that my death will, like all deaths, have a ripple effect that will affect my loved ones and those close to them, my death will have the most meaning to me.  In keeping with my belief system of gaining experiences, my personal death experience may or not be the most important or memorable opportunity to gain perspective.  I wish a conscious death, one with awareness understanding of each phase of this “greatest transition.”
I hold a strong belief that what makes us “us” is a Spirit, an ethereal energy that resides here on this plane and in this “body suit” temporarily before moving on to what’s next.  All things are impermanent, including this physical body and this life.  Impermanent too is the experience of the Spirit in the next plane.  I believe that for a time the “I” that is me will cease to exist as I become one with the Divine.  After an indeterminate amount of time, because time isn’t linear only our perception of it is, then my Spirit will most likely again choose to be reborn into another body and another time and place to continue to grow, learn and experience.
I live with chronic illness and it happens to be the exact same diagnosis that my mom had, who passed at ago 56.  Because of this, as well as my own desire to connect with Spirit, I’ve spent a great deal of time studying my own anxieties and concerns about the deaths of my loved ones as well as time in self-examination about my own death experience. With my strong spiritual belief in Divine order and meaning, I have alleviated much of my anxiety.  I believe that there are reasons for everything and even though I may never know or understand what those reasons are, I am comfortable knowing that there is a greater purpose.  I do still have some discomfort and anxiety around the idea of a quick end such as a car accident or other violent death, but I work with the idea that whatever my experience is, then that is what is supposed to be.  I honestly don’t know how to make it through my day without the idea that there is a power greater than myself supporting me and guiding me towards my purpose and for the Highest Good. 
I was raised Roman Catholic, baptized, communed, and confirmed, although materialist science was also taught in my childhood home.  A perfect example was when my mom explained to me that I couldn’t take the Bible too literally and even though it states that the earth was created in 6 days (Genesis 1:1-31), that each of those “days” could mean an epoch or an era.  She would then use this as a teaching opportunity to explain geology or pre-history.  Today I understand the power in ritual, chanting and mantras, prayer, incense, etc, but I choose to use those tools to focus my consciousness and to connect to the Divine Source without a prescribed set of dogmatic beliefs.  I believe it is more important to have a personal and intimate connection to God/Goddess/Universe that feels true in my heart than to behave according to the rules of human intercessors.  
The experience of introspection and contemplation throughout my lifetime has led me to make different choices than I would have if I had continued with the same belief system as my family of origin.  I learn and practice present-focus, I live in the now and I do it right here, because it is only the present that matters.  While I have held these beliefs for many years, my active daily practice has improved since I received a diagnosis earlier this year that is not immediately life threatening but is life shortening.  Every moment and every action matters, every word I speak holds weight and power, and since I don’t know if I will have a chance to right a wrong, I make every effort to do it right the first time.  I make choices that others might view as risky, and I do it because I place a high value on having the experience, on surviving or completing a task or an ordeal.  I’ve jumped out of a perfectly good airplane, I ride a motorcycle, I am working on my Bachelor’s Degree and next year I’m moving to San Francisco to live near the ocean.  I don’t intend to wait for a physician to tell me I have limited time in this body to change my ways of living and interacting or to do something I’ve always wanted to do.  I already know that time is limited so I’m doing it now.  And if I don’t get to it this time around, time is also infinite so I know I’ll have another chance on my next turn around the wheel.
“Regret for the things we did can be tempered by time; it is regret for the things that we did not do that is inconsolable.”  Sidney J. Harris

A Face Lift

I spent about half an hour today giving my blog a facelift. And considering it's been a year and eight months (!) since I've posted anything, half an hour spent on my blog is a pretty big feat. I really think at this point in my life that if it looks pretty and feels fresh then I'll be more apt to post with more regularity. It will be fun finding out if this hypothesis is true.

So much has changed since I last posted and so much has not.

I live in Berkeley, CA now, and work in San Francisco. SoMa to be more precise. My major has changed, my life plan has been *completely* revised....and yet it hasn't. I'm still sick with ME/CFS...that just doesn't go away, but things have been somewhat better with my move and meds. Still no health insurance although I'm hopeful that will change this year with finally being a full time student again. I ride my bike, Lucy, Switch the cat is doing great, and I'm partnered with a wonderful Butch named Vick. I like Scotch and I've become a Celtic music junkie.

I continue to maintain my happy upbeat and positive attitude about life, because if I didn't I'd loose it pretty quickly. Life is good and I am blessed.