Welcome to Redefining Myself!

My inward journey to living a mindful and quality life

while living with NP-SLE, RRMS and CIDP

and their overlapping accessories.

Slapping the face of many things demyelinating.

Wednesday, July 31, 2013

Today I may feel like shit. Today I may not be able to cook a meal for my daughter, we may have to eat sandwiches, or left-overs. Today I may not be able to take a shower, or brush my teeth. Today my thinking may be so skewed that I cannot even hold a conversation with someone. Today I may not answer the phone or emails. Today I may feel like giving in and giving up. Today I may feel defeated. Today I may isolate. Today I may be so exhausted but I cannot sleep!

But all of these things that my body is feeling and all of the thoughts that my mind is entertaining, will pass.

Over the years I have learned that I will not feel these things indefinitely. And I have also learned from my living breathing experiences, that these dark periods of demoralization are normal reactions when living with chronic illness. Periods of demoralization do pass.

During these times I have found that just admitting (if even to a few people; and I don't even have to elaborate on the details!!) to these periods of dark times, help strengthen me to walk through the seemingly hopeless times. I have learned to be willing to believe that these dark times do pass- because inevitably they do.

My body has experienced many residuals that have lead to physical disability, but I do know that though my body has gone south, as long as I'm willing and open-minded, I keep learning new tools to live, move and have my being.

#SickChickPMA  #CNSGrrrl 

Monday, July 29, 2013

Chronically Ill People Need Validation

Do you remember what it was like to go undiagnosed, from doctor to doctor, while your quality of life trickled away? Being dismissed by doctors was one thing, but being dismissed by your family and friends was the absolute worst feeling of abandonment. 

Then the diagnosis finally comes, you are vindicated, you get placed on medications. The people in your life think that the diagnosis will be the cure to your complaints and that your quality of life will return! 

Well, the disease that you have decides that it has other plans for your body and instead of stabilizing, it takes you south. You get worse. 

Your loved one's do not understand that the journey of failing health coupled by being dismissed by doctors is extremely traumatizing and life altering! We also struggle to maintain some normalcy in our lives with our undiagnosed failing health. Some of us will get worse over time and that can cause even more misunderstanding from our loved one's. 

Our loved one's need to be willing to understand that not only are we traumatized by the multiple experiences of being dismissed by most of mankind with our undiagnosed illnesses, but that we are also forced into grieving our lost health, our mobility, our cognitive function and our old lives. 

Most loved one's do not understand that we have been traumatized by all of these experiences and events. That failing health has also traumatized us as well and that it continues to traumatize us as well. That being chronically ill forces us into living the grief process.
That being chronically ill keeps us in the continuum of the grief process. There is no closure with this grief process, because the very nature of a chronic illness is just that: chronic, ongoing, without end. That when we find a new level of daily functioning, sometimes out illness throws us a curve ball and that we have a whole new set of things to process and adapt to. That we sometimes feel like our bodies have been hijacked by illness.

If we have periods of bitchiness (i.e. grief process of anger) that we are struggling to adapt... yet again... That we are struggling with feeling defeated... yet again. We only ask you to be understanding with our process of adjusting to our new set of health complications and yet more limitations; and for you to NOT tell us how to process our new set of limitations, but to just allow us our own emotional and mental journeys of processing a new set of health problems and the impact that these new problems are having on our minds, bodies and lives. Please understand that chronic illness is life altering and that we did not ask for these illnesses and that we are struggling to adapt our minds and lives to the continuum of chronic ill health. 

Chronically ill people need validation (not pity, not babying), and simple gestures of understanding from our loved one's. Gestures of emotional support will not only help strengthen us inwardly but also provide us with the necessary foundation of inner strength and peace of mind that WE need to battle yet another obstacle.


#SickChickPMA #CNSGrrrl

Monday, July 22, 2013

Boundary Setting for the Chronically Ill

I'm learning how to set more effective boundaries with people. Being sick with a chronic systemic disease has required me to remove myself from useless relationships specifically emotionally toxic ones. I cannot tell you how being sick has really motivated me with spending my time wisely. I had a few old relationships that were not productive, they lacked personal growth and were rather idle in drama and gossip. Spending time with those people made me feel emotionally drained and fractured. I wrestled with this erroneous sense of obligation to the 'relationship.' That feeling of obligation was not real. There was no truth in the emotional entrapment that I was participating in. I realized that all I needed to do was remove myself from it; to not engage with them. I also realized that I was not obligated to discuss my leaving to them, because they were emotionally incapable of such a discussion. Well, I'll tell you that the mere act of me stopping all contact with them made me squirm with these erroneous & false feelings of obligation. But I just kept moving forward. It is very liberating to remove toxic relationships from my life and to not waste what energy I do have on idle bullshit. 

I've gone no contact with first degree relatives and even a 20+ year old friendship. I learned that what I had with these relationships was wishful thinking. Healthy relationships are mutually productive and supportive to the emotional growth of both people. My time is limited and nobody else lives in my skin except for me. Are My actions and thought life confirming my emotional well-being and peace of mind, or not? If they are not then what steps do I need to take to ensure my emotional well-being? 

If I'm unhappy about something in my life (including between my ears) then it's my duty to ensure my own state of inner peace.

Recently, I ran into an old acquaintance, who is elderly and extremely frail because of a serious illness. We exchanged phone numbers and within two days he reminded me why I had stopped contact with him
several years ago. He disrespected my boundaries and well, he blew it. I owe him no further discussion about it and that is totally okay. Now, I just move forward with keeping mindful to my well-being between my ears, because with my body failing me I need as much quality of life between my ears that I can get!

Wishing you well!

#SickChickPMA #MindfulLiving #CNSGrrrl 

Saturday, July 20, 2013

I remember the few years that I bounced between doctors and tests and the growing list of symptoms. I slowly started not living a high maintenance life style. I didn't always do this gracefully nor always willingly. I caused myself some serious grief and frustration by not setting limits for myself. During the times that I wavered in moments (sometimes hours or days!) of denial of my limitations to perform as super woman; I'd crash physically and then battle demons between my ears.

I was not willing to ask other's for help. I was not willing to set limits and adhere to them for myself. I really bumbled my way with this in many aspects in my life. Today, my health and mobility issue's really require me to continue to be willing to set limits and even more so to ask other's for help when I need it. If I do not do
this, then I suffer and my suffering has a ripple effect on those around me. 

I must continue to set limits for myself in this new life as a disabled person. I'm the only one responsible for my quality of life. It is my hope to continue to grow in this state of mindful living which starts between my ears. 
#CNSGrrrl #SickChickPMA