Category: chronic illness and education

Let’s talk about today…

I’m in the land of the living; however, most of my residence today is in the I Am Chronically Unwell camp! That’s no problem!

Well it’s a bit of a problem…let me explain.

I’m what most people would consider invisibly unwell. Meaning that there’s not many external markers that give away my membership in the club of chronically unwell and/or sick individuals.

There’s millions of individuals who have invisible illnesses so that’s not the problem.

The problem is that at times my acting skills are so good that even I forget that chronic ailments take up residence in my body. Yes, acting skills! Day in and day out I purposely put on my best face and I muster up all the strength I can to downplay my membership to the chronically unwell club.

Through the years I’ve worked hard to not allow my ailments to define me. We’re not going to get into how psychological, physical, and emotional damaging this mindset can be when it has limited impact on the true state of illness.

I won’t say that this acting is a bad thing, neither will I declare it a good thing…I’ll let you draw your own conclusions. I’ll just say the acting is what I do on a daily basis. Acting as if I am free of any ailments despite the fact that my body is riddled with ailments became my way of life decades ago. So much so that presently acting well is simply a habit now.

Sigh. So when I have days like today when my illnesses outweigh my acting skills and I must pause…I struggle.

I struggle because I’ve spent so much time pretending to be well that I forget how to tend to my illnesses.

I struggle because no one is used to me saying no or being unable to participate in whatever activity they want me to.

I struggle because on those days (today) I’m forced to look at myself and see the illnesses that I fight so hard to ignore.

I struggle because the illnesses impact my entire being.

You’d think I’d only experienced days like today once every three years, the way it seems to knock me down. You would think that there’s no warning signals and that I’m always caught by surprise based on my reaction to days like today.

None of that is true.

I frequently experienced days like today. There’s generally always warning signs and I even take steps to prepare for the life interruptions. Yet, I’ll never get used to the toll days like today take on me.

Days like today will be familiar, yet foreign.

Plans. Pain! Plans?

It was Sunday, which meant it was time for me to mentally plan and prepare for the week. It would likely be more sensible for me to plan on Saturdays; however my Saturdays are booked and so I plan my week on the first day of the week…

At times those plans are very loose; those are the times when I actually plan to stream programming, read a novel, or watch random videos and listen to music.

This Sunday my plans were not very flexible as far as the tasks I’d intended to accomplish. I planned a set amount of hours that I’d spend on the tasks in order to follow my plan for the week.

Well…here’s the problem – when I planned my tasks for the week I failed to plan for pain. Oddly I failed to even consider the possibility of pain.

Not considering the possibility of pain is odd because I actively live with chronic illness and pain. Well I guess I wanted to think positive and plan my week without the presence of pain.

I am in pain most days of the week, multiple hours in a day; however, when I planned my week on Sunday…I didn’t consider the possibility of pain.

At times I believe that the faith talks dissuade me from practicing self care. In many ways faith talks or willpower talks fault the person going through something and rarely addresses any core problems. When faith talks and willpower talks occupy my mind I believe I am able to not consider the pain I experience on a regular basis.

Somehow That pain pauses until my weekly tasks are complete or at least that was my frame of mind Sunday when I made plans.

Surprise, I know it’s not even going to shock you, pain was not only present while I attempted to complete my scheduled tasks, pain sidetracked me to the point that I was unable to stick to my scheduled events.

I’m not new to chronic pain or illness. I’ve dealt with these things in various forms with varying levels of success most of my life…so it’s amazing that I’m astonished that pain made my plans questionable.

Whether I’ll be able to complete the scheduled tasks this week as planned is a question that will remain unanswered for a few days.

Pain has interrupted my sleep cycle, lack of sleep impacts my comprehension levels which are already lowered as a result of the pain…all of this makes it difficult to complete my tasks I scheduled for the week.

Ok so at this moment I’m accepting the possibility of being unable to complete the planned tasks this week and like many people living with chronic illness and pain. I adjust and do what I can, while thinking to myself “why did I forget to make room for pain?”

What do you do when pain makes your plans questionable?

Rest required

I have a few chronic illnesses, some that I’ve written about in the past…it doesn’t matter what they are, just know that they exist and they impact every facet of my life.

I recently defended my dissertation (Yay Me!!!) now it is time to focus on job hunting (Why me?) and this is where chronic illness is front and center.

So I’ve lived with these chronic illnesses for many years and I’ve achieved my educational goals…although things never went smoothly…and now I’m exhausted

I have important people to contact, cover letters to compose, and applications to complete…but I’m tired.

I’m not only tired from the arduous process that is a doctoral program…my chronic illnesses are screaming at me to pause temporarily.

My chronic illnesses are suggesting that I breathe, meditate, then rest. Sigh.

As many of you know, application deadlines and all the many things necessary for getting a job fails to account for the fact that your (my) chronic illnesses demand that I rest.

Some of you may even go so far as to say, if I need rest during the application process, I’m likely not able to do the job for which I am applying.

Then there’s others who would say that the PhD process is tedious and the typical person would need a break, so it’s not unusual that I need a break…in the form of a short rest.

The problem I often face as a result of being chronically ill is that I wonder if I’m being lazy or I really need the rest.

Those closest to me suggest that I simply need the rest, but even that’s not always convincing enough to stop my negative self talk

As someone with chronic illnesses, it is hard enough to deal with some outsider suggesting that you are lazy, incompetent and yet many of us, myself included engage in negative self talk when our bodies demand self-care.

I am someone who possesses chronic illnesses, but I’m also more than that. I am someone who needs accommodations, but I’m also more than that. I am more than any identifier I possess…if only I consistently believed that.

Stress induced flare

Ok so here’s the deal, in less than 10 days my dissertation defense will happen and my angst is high

I’m not nervous about what I know as it pertains to my dissertation; but I’m concerned about the what’s next questions that are flooding my mind

This is bad because the illnesses that reside in my body react badly to stress…really bad.

My thoughts are jumbled; I’m frustrated and I’m ready to scream

I must find a way to calm my mind and balance myself.

I must relax or else I won’t make it through my dissertation defense because I’ll be nursing a flare.

Why are my illnesses stress- sensitive ?

The Memo

The chronic illness related pain failed to read and/or comprehend the memo which stated:

To Whom It May Concern:

The deadlines are fast approaching and must be met. There’s no acceptable excuses for said person to miss these deadlines. Reasonable accommodations were made and any extensions beyond those suggests that said person is unable to adequately perform the tasks.

Signed,

The Deadline Committee

Well, back to the chronic illness related pain that failed to read and/or comprehend the memo and decided instead to flare when I (aka said person) desperately needed to write in order to meet the deadline committee’s demands.

Clarity statement: NO committee or individual gave me such a deadline notice…IRL

PhD and Me

The closer I get to finishing this PhD program, the more I wonder if it was/is worth it.

I’ve sacrificed much for this lofty degree and when I started I had a plan; I had major plans…but now I’m releasing myself from all of the plans I had and letting life fall into place.

One thing I know for certain is that my plans thus far constantly changed…whether it was due to my ugly battle with endometriosis and other chronic illnesses or the people I’ve met who enlightened me…I’m not the same and my trajectory has changed.

One day I hope to look back and say: those years I sacrificed and the relationships that suffered due to my pursue of this lofty degree were worth it.

Until then, I will continue what I started because I’m too close to the finish line to stop now.

 

I Think I Can

I should graduate from my doctoral program May 2018; but there’s so many changes that will happen before that day.

Health, illness has caused major delays in my original plans but I’ve made progress also. If you’ve read my posts, you know that I have endometriosis and I’ve known for awhile.

I had a dream to receive a PhD so that I could not only teach at the postsecondary level, but so I could help others reach their goals. Believe me when I say that I don’t believe you need fancy degrees to help people and you certainly don’t need a PhD; however, there are some levels of access that are denied to many without the fancy degrees.

My pursuit of this degree is not for reasons of vanity but lies in the fact that it inspires many. Many groups are still underrepresented in the halls of academia so it’s not shocking that some individuals from those groups feel that dreams of having fancy degrees are just that, dreams. I am and will always be a symbol that those dreams don’t have to remain dreams. I look to inspire at least one person to pursue her dreams.

I am representing many underrepresented groups…I think I can achieve my dream of obtaining this fancy degree I’m in pursuit of in spite of the seen and unseen obstacles in my way.

Often I have to encourage myself to keep going because it feels like an uphill battle…but in a little over one year this battle will be won and I’ll prepare for the next one.

I believe I can do this and that’s a major part of the battle.