Thanksgiving Break

download (4)

I will be taking a short break from writing to enjoy time with family for the holiday.

I am thankful to all of you who take the time to read my ramblings and for those who have taken the time to comment and share in my journey.

Wishing all of you a happy and safe thanksgiving holiday.

Advertisements

The Quandary Of Fatigue And…I Hate Boredom

images (7)

Otherwise defined as apathy, weariness, lethargy, restlessness, tedium and dullness, boredom can be a great enemy to the chronically ill.

Fatigue synonymous with weariness, sleepiness, drowsiness, lethargy and exhaustion share quite a few commonalities with boredom and fatigue is very often a symptom, sometimes a severe symptom of many chronic conditions.

I’m not really sure these words describe fatigue accurately. In my experience, fatigue feels like I have an eighteen wheeler strapped to my back while I am trying to run up a hill. It feels like walking in mud up to my waste and every step is one desperately slow slog. It feels like I cannot find my way through dense murky fog with ten ton weights strapped to my arms and legs. There is no way to get these weights off my limbs and I am at the mercy of the fog just waiting for it to lift.

It is not depression. It is different than depression. It is purely physical. The desire is there but the body simply cannot connect to that desire like there is some kind of short circuit.

Often there are no good solutions to managing the fatigue. It comes and goes on its own schedule. All I can do, is try to live around it the best that I can. The kind of fatigue that I endure is not easily understood until you experience it yourself. And, I would not wish this feeling on my worse enemy.

images (8)

The idea that boredom and fatigue seem to be closely linked got me to thinking that I sometimes wonder if some of my fatigue is exacerbated by boredom. And, if this is the case then I am faced with quite a quandary.

I cannot help that I have physical limitations now due to my disease and that these limits are in large part due to pain, shortness of breath, medication side effects and fatigue.

These limitations lead me to be…well…bored. I cannot do a lot of the things I once did and while I have found other things to fill up my time that do not tax me physically, writing my blog for one, I am still not nearly as socially or mentally stimulated as I once was.

When the fatigue is at its worst and lethargy sets in, I grow weary and find doing anything that would be even remotely stimulating difficult. I feel loaded down by an invisible pressure that bears down on me so hard I cannot find my physical balance. I am rendered utterly weakened.

images

So I sit or I lay. But as I do this, my mind begins to drift to all the things I want to do but don’t have the energy for and then boredom sets in which I have noticed adds to my already thick existence.

So like a germ that spreads like a virus, boredom is my enemy and I must, no matter how I feel, no matter how much weight weighs me down, guard against it for it only feeds my fatigue like a hungry goblin.

Despite fatigue, I must push myself to stay engaged in the world. I must, regardless of that awful thick murky feeling that overtakes me every day, fight to remain upright and occupied. I must shove boredom out of my life. I must keep boredom at bay.

Boredom is not my friend. Boredom makes fatigue worse. Boredom must be overcome. I hate boredom.

 

Insides and Outsides, Big Fish And Little Fish And Apples and Oranges

I am learning that comparing my insides to someone else’s outside is often like comparing apples and oranges. We can never truly know another person’s pains or joys fully and because of this I am learning that it is best not to judge them for I will only be able to do so through my own experience which will in turn only lesson theirs.

Even though an apple and an orange are both fruit, they don’t have much else in common.

images

I have often found this to be true of people as well. While two people might share something in common, they are apt to experience it differently. And they are apt to experience it differently for all kinds of reasons which can include how they grew up, where they grew up, their current socio-economic level, their former socio-economic level, their ethnicity, where they live, how they live, their religion and so on….you get the idea and these things will color their reaction to that experience. Thus, making something otherwise very similar quite different and quite unique to the individual.

My doctor will often tell me that she has patients who are sicker than I am with my particular disease. I suspect this is her attempt to make me feel hopeful and on an intellectual level I get this. But on an emotional one, I hate it when she does this.

When she does this, it diminishes my experience and all I truly know is my own experience. I know who I was before this happened to me and I know who I am now. I used to be physically stronger. I used to have bounds of energy. I used to be quick witted. I used to be pain free. Now…well…not so much on any account.

In addition to this, people will some times tell me that I don’t “look sick”. I have learned to take this in the spirit it is intended but it is just another example of apples and oranges and comparing insides and outsides and how none of us truly understands someone else’s experience.

Whenever I have found myself comparing myself to someone else, I have also found that I am in an unhappy condition. My state of mind is not at peace when I do this. Generally when I engage in this behavior, I have found myself insecure, jealous and self conscious. Yuck!

And whenever I have been compared, it hurts. It makes me feel misunderstood, belittled and sometimes guilty.

Sometimes I have more than another person. Sometimes I have less. If I have more I should not have to feel guilty for it and I should not act superior. If I have less, I should not belittle someone else in an attempt to gain what would be shaky ground anyway.

We all experience life differently even when we share commonalities and as such, I have found it better to embrace this fact because when I do, life is not only easier, I learn more and I have peace.

images

I may be a small fish in a big pond and you may be a big fish in small pond. The fact that we are fish is really all we share in common. Our experiences are bound to be quite different because of our underlying circumstances which are often not fully known and therefore should not be judged.

So fish or fruit or human, what I am learning is that it is best not to compare myself to others for I don’t fully know another person’s situation. I may only know a small part of it and since I am learning that comparing is just another form of judging, I am also learning this is not how I want to be.

Instead I hope to appreciate our commonalities so I know I am not alone while still being able to embrace our differences so that I can learn from my differences with other people rather than judge them.

Enjoy The Journey…DUH!

images

I am finally figuring out that life is full of shades of gray. And that we don’t always have the answers to the problems presented to us nor will we always know where the transitions in life are taking us until we get there.

I am finally learning that part of life is just learning to appreciate, accept and even, dare I say…enjoy the unknowns.

Now, I understand not all unknowns can be enjoyed; Like finding out you have a medical illness that is possibly life threatening or having to deal with the loss of a loved one.

But that’s not what I am talking about.

I am talking about the natural ebbs and flows of life’s journey in general. Because life after all, is a series of transitions. Childhood to young adulthood to middle age to becoming elderly.

And during this process we experience all kinds of transitions. Our first day of school, then high school, sometimes college, first jobs, first careers, first kisses, first loves, sometimes marriage, sometimes parenthood and eventually if we are lucky enough to live that long, retirement.

There are so many types of transitions. Sometimes we have to move away from home. Other times marriages don’t work out. If you’re lucky enough to have children eventually they grow up to live their own lives.

So life is all about transitions; Phases of time that bring about change.

images

And as I look back at my life, I realize I am not a person who has entered these phases in my own life with much grace. I would not say that I have been a “go with the flow” kind of gal.

In my lifetime during these uncertain, gray times, I have been very uncomfortable. I find myself preoccupied with wanting to know where I am going and what is next.

I have not been a person who transitions with ease.

I am in a transition now and I can myself getting anxious. I want answers. I want control.

But now that I recognize this about myself, I can change it. I can work on letting go of my need to know, my need to control and I can instead embrace the uncertainty and decide to view it as an adventure rather than a problem to be overcome.

Answers will come. They always do but they come in their own time even when I’ve tried to control them in the past.

So my new plan is to try to relax through this transition of uncertainty, allow the process to unfold as it should without attempting to get in the way and control it. I will be open to the change and I will be encouraged by it rather than discouraged by it.

I will look at this time of transition as an opportunity for personal growth and I will accept that I am on the path I am meant to be walking, knowing that it is okay to be uncertain and it is okay not to have answers at every turn.

images

I can enjoy the journey without fear of the destination.

You Can’t Overachieve Your Way Out Of Chronic Illness….Can You?

aEwVjdM_700b_v2

I am learning the hard way that the answer to this question is no. No… you cannot overachieve your way out of chronic illness because if you could, I know I’d be cured by now!

All of my life I have strived to succeed. If you told me that I couldn’t do something, I was going to do it and do it better than anyone else. If you told me that I was good at something, I wanted to be even better. I pushed and pushed hard throughout my life. It’s a family trait or maybe a family curse. I haven’t figured that out yet.

index

My last boss used to tell co-workers to share their problems with me because I was like a dog with a bone and I would not let go until a solution was found and progress was made. I was good for business. But that drive is also what drove me out of my career when became ill with my sarcoidosis diagnosis. I pushed so hard that all I did was make myself sicker.

I suddenly found that I could no longer overachieve my way out of being sick and I have tried. Believe me, I have tried. The first thing I did was educate myself on my bizarre and rarely heard of disease so that I could be an active participant in my healthcare decisions. I have faithfully attended all of my medical appointments and I have been poked and prodded like a pin cushion. I changed my diet. I started exercising. I lost weight. I regularly see my health care specialists and follow their guidance to the letter. I take all of my prescribed medications with complete knowledge regarding every drug including a full understanding of what it is supposed to do for me and what the potential side effects are as well as potential drug interaction. I’ve even reviewed my own medical records for accuracy.

There is no known cause and no known cure for my disease yet somehow in my overdeveloped sense of achievement, I have believed that I could somehow find a way to fix this problem too so that I could just get back to my normal life and be done with all this already!

Well, this hasn’t happened…yet.

What has happened is that I have had to slowly and painfully realize that I am now someone who has to do things differently. I am now someone who has to live differently. I am now someone with limitations because no matter how hard I try to throw answers at the problem that is my disease, the worse I end up feeling.

I cannot overachieve my way out of chronic illness. I can however, learn to live with it.

index

I can learn to live with it by accepting that I need to allow for a new concept to be my guiding force…balance. I can still achieve and I can still strive. I just have to do it at a slower pace and allow for rest.

I can still be a problem solver and that dog with a bone but now, I might have to share the bone and let more people help me which is very hard for a classic overachiever like me!

I have to learn that making necessary adjustments to my disease does not make me weak. It does not mean I am a failure. It does not mean I should not set goals. It just means I need learn to set realistic goals and allow for added time to meet them.

Balance.

Balance is a new skill I need not only to learn but to embrace as my best weapon against living with sarcoidosis.

Balance is what I need to find in order to have peace.

Balance does not mean giving up or giving in.

Balance is what will keep me from falling.

Balance is what will stabilize me because trying to overachieve my way out of living with a chronic condition is not working!

Downsized

index

I’ve been downsized and I’m learning there are trade offs for it – some are gifts and others are hard lessons.

Having a chronic illness can some times feel like your life has been downsized without your permission. On the one hand I have tried to accept the forced stillness placed on me as a gift to make positive changes. I’ve been fairly successful at this to varying degrees. On the other hand this forced stillness makes me feel like my world is shrinking and with it so to is my identity. I don’t know where I fit anymore.

When I first quit my career due to my illness, I had a feeling of relief and freedom. I had an opportunity to slow down and begin to adjust to the physical changes my body is putting me through. And with this opportunity, came time to re-examine my life.

I learned that I had been very driven by my career, very focused on it and was defined by it. I came to appreciate that this is not the healthiest way for me to define myself as I also noticed especially as I was becoming ill and still trying to work that all of my energy was going into it and not anywhere else. Or that at least too little of it was going to places of equal or more importance. Places like my family, my home and my friendships all took a backseat.

So time off was a good thing for me physically but was also a really good thing for me emotionally/mentally. I started to view the world differently. I began to realize that I wanted to be more focused on my family and my friends and the people that are most important to me. I wanted to be more present in each moment of life and began to notice small things I think I used to miss or take for granted. Small things like my husband’s great smile, the truly cloud free blue sky, the moment one of my dogs brings me a toy with nothing but pure joy in their eyes. I also started to take better care of myself physically which has helped me cope with the symptoms of my disease.

These are good things and things I am very grateful for.

So my illness downsized me in that it took my career and while some really great things came out of that for me, it also shrunk my world considerably thus one of the trade offs that is hard to cope with. It also made me more dependent on other people – especially my husband. And for a once fiercely proud independent person, this trade off has been ego bruising.

Right now, as I enter year two of not working, I realize that I need to begin to find value again in the outside world. I’ve dabbled a little with some volunteer work here and there but nothing that has really spoken to me. I have tried to stay socially connected by going to lunch with friends as they are available but a life of social events and lunch outings is not enough for me to feel fulfilled.

I also notice that as my world has shrunk, so too has my self confidence and I sometimes question my ability to make good decisions and I wonder what my value is now with diminished physical strength.

It can be very hard because some days I feel really almost normal and I begin to fool myself into thinking that I have my disease licked and I start making big plans in my head about how to get my life back on track. Then I’ll have a string of really down days. Aches and pains and shortness of breath and all kinds of other unpleasant symptoms will hit me and hit me like an on coming freight train and I am down for the count.

I’ve been downsized by this disease. There is no question about that. Things have been taken from me and things have changed for me. I have to be okay with this. I have to find a way to be okay with this. I have to find a way to make peace with this. I have to accept that my world is smaller now. I cannot do the things I used to do. I have changed physically and I have changed emotionally. And my place in the world has changed.

That’s what downsizing does. It changes us. It does bring with it some level of ease as there is less to worry about. But it also brings some uncertainty as all change does.

So right now on my journey, I am in a place where I have to accept that I’ve been downsized so that I can figure out how to regain my place in a new and meaningful way in this world with revived self worth and confidence once again.

I have to accept that this means I will be different now but different is not bad, it is just different. I am smaller in the world but my impact can still have value. I can still find a way to connect. I just have to figure out how.

Not Meant To Be “Preachy”…No Offense Intended

images

So, my husband read my blog tonight. His feedback was that I am starting to get “preachy” and he was worried that I would be turning readers off.

Granted my recent posts are more forcefully written. They are things that I feel strongly about. But they are not meant to be “preachy”.

The reason I write what I write is because I have learned something about that particular topic either from my own mistakes and or through observation of the human condition. Usually it is some combination of both.

I don’t ever intend to tell other people how to live. How you live is up to you.

My only hope is that you will enjoy my writing and take something useful from it for yourself.

So, if I’ve been a bit “preachy”, I don’t intend to be and I don’t intend to offend anyone.

My writing style is evolving so I appreciate you sticking with me through these transitions and for your understanding regarding my intend.

Thank you for reading my blog and thank you for supporting me in my writing efforts.