Tag: chronic illness

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?

Reveille

Listen to your body. That’s advice I give often to my friends and family.

Somehow I don’t believe it applies to me!

Ok, pause! I’m not suggesting that I’m immortal and I have no reason to listen to my body

However I am suggesting that my actions often suggest that I do not have to listen to my body.

Here’s the craziest part about this dismissive attitude I possess when it comes to listening to my body…wait for it…the same body that I refuse to listen to is filled with chronic, autoimmune illnesses.

To me it’s laughable that I actively don’t pay attention to the glaring signals my body gives.

It’s laughable because individuals like me whose bodies possess chronic, autoimmune illnesses are often and always told to listen to their bodies.

My stubbornness decides to ignore my body. Part of this is because living with chronic illnesses some which cause chronic pain individuals learn to ignore their bodies. We honestly cannot react to every single signal our bodies send out

But we have to find a balance to know when to pay attention to the signals our bodies give

And this is where my resistance is strongest.

It’s nothing for me to make an appointment 10 weeks after experiencing abnormal swelling that gets worst during that time. Health professionals often look at me in amusement and disgust when I tell them how long symptoms X started.

Maybe it’s a signal from my body but I’ve forgotten what I planned to place here so I’ll just end it!

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 ?

Chronic illness identity

Chronic illness warrior, chronic pain survivor, spoonie, chargie, dis-Abled, fighter, and all of the other labels used among individuals who face a myriad of long term illnesses….

It matters little how I refer to myself when I’m at a place where I feel there’s nothing I can do to overcome, conquer whatever my illness has brought to me.

The labels tend to carry little meaning when I’m facing the implications of my illness alone

They matter even less when I’m sitting in yet another physicians or alternative health professionals office and/or waiting room…

So why do I find such comfort in whatever label I choose for the day? Although it seemingly doesn’t change the trajectory of my chronic illness or the acknowledgment of my pain by others?

These labels may have little meaning outside of the communities they create which often transcends an individual’s immediate surroundings.

These labels thrive in cyberspace and it’s easy to see how certain events in the real world are crafted around these labels.

Personally, I’ve found them useful in cyberspace and I’ve enjoyed the disconnect in the connections I’ve created through these labels.

I consider it a disconnect because I only checked into these communities when I felt the desire to…otherwise, I stayed away.

Some years, I was connected to various chronic illness themed communities on a daily basis…I was even an administrator of one such community at one point

But once I received what I needed or at least once my outside support system stabilized, I relied on the amazing community less.

Now, I’m not a part of any particular community of chronic illness individuals. At times, I miss the relational aspects of the communities, I miss the feeling of being a part of something bigger, the feeling of not being alone…but for the most part I don’t miss it enough to immerse myself into any of these communities again.

It became overwhelming as I shared my story, my experiences with so many who could relate…it was sometimes overwhelming to witness the pain and suffering many of those individuals in these groups shared.

Now. I’ll mention various chronic illnesses or pains I endure, but I don’t want to be consumed by it anymore.

My illnesses impact every facet of my life daily…but my needs are different than they were years ago when I had to plug into the communities to maintain a semblance of sanity.

I’m forever grateful for the groups and the amazing people I’ve had a chance to interact with throughout the years of my intense involvement.