The Many Definitions of “I’m Fine”

There are myriad definitions for “I’m fine” when one is trying to live with a chronic illness. When I say, “I’m fine” it can mean so many different things…

My “I’m fine” Meanings:

~ I’m actually fine which can be so rare and elusive at times that when it does appear, I try to hold onto it for dear life.

~ I’m ok…a very fine line between I’m fine and I’m a bit off today, but I’m going to try to look on the bright side and make the best of things.

~ I’m not fine, but I’m going to plaster on the “I’m fine” face and soldier on.

~ I’m really not fine at all, but I’ve got things to do and people to see, so I just have to believe that I’m fine and maybe I will be.

~ I wish I felt as good as some seem to think I look! I might have make up on and a pressed skirt, but on the inside, I’m completely falling apart.

~ I so want to be fine. Just fine will do; I don’t even need extraordinary, just fine will do on most days.

~ Not fine at all…curled up in bed.

There are so many more. I think I wear more masks than the cast of any Broadway Show. My “I’m fine” one gets used most often and is slowly wearing out. I need a new mask, or maybe just no mask at all. To let people know who I am without fear of anything.

Not today though and maybe not even next week, hopefully soon. I need a break. ‘

Not to worry though, I’ll be fine J

 

 

(https://www.facebook.com/#!/LupusAndMe)

 

This sucks…

 

So, I’ve relived my excruciating experiences to date with my various visits to idiotic doctors. I’m sure I’ve missed a few things along the way, but suffice it to say…having POTS SUCKS!

This disorder has given new meaning to the phrase “one day at a time”, and if you are like me, it is now down to one second at a time.

Maybe God is trying to tap me on the shoulder, but really I think He just decided to run me over with a truck…I’m still trying to peal myself off the pavement. As of late, I have missed out on so many occasions that I can’t even keep track of them all. I try to look on the brighter side, but let’s face it; sometimes it’s just too hard to see the light at the end of the tunnel.

I don’t want this to be all doom and gloom, however I’m a negative person and that’s how I roll. Can’t help it, wish I could, I’ll try harder tomorrow.

Thoughts into Poetry

Life Passing Me By
(Original)

As I sit and watch
Those that take
All the little things
For granted,
Not realizing it at all.

Not realizing, just living.
Doing the things
Normal people do,
Without even knowing it.
Without even a care.
Without even thinking about it.

I long to be one of these,
With little care in the world.
Just living,
Without life passing me by.


Changing
(Original)

As I sit in my room alone,
The world goes right on by without me.
So many things I want to do,
So many things I want to be included in.
This illness is defining me and I can't let it,
I won't.
But how?
How do I not feel tired?
How do I not have a headache?
How do I not feel pain?
How do I not worry?
How do I not get discouraged?
How do I not feel guilty?
How do I not...needs to change
Into...I will not.

Having a pity party kind of day...

Dealing with Grief

Dealing with grief doesn’t always have to involve death. When living with chronic illness, grief can come in many different ways. In some cases it comes in the form of losing independence, the loss of certain functions and faculties, the loss of what our lives used to be. The difference between grieving over death and grieving through a chronic illness is that many times there is no closure. Things are just lost…out there in space with nary a way to retrieve them. Sometimes we can attempt to get these things back, there are times that they feel lost forever and in some cases, sadly, they are.

I’ve been reading Coping with Chronic Illness by: H. Norman Wright and Lynn Ellis and have been encouraged by what they have to say about this and want to encourage others with their words.

“…Like a silent conspiracy, we seem to have an unspoken agreement not to talk about what we can’t do anymore. Yet with each loss comes the potential for positive change, growth, insights, understanding, and refinement. One reason could be that these hope-filled opportunities are realized or come in the future, and we fail to see that far ahead when we’re in the midst of grief.

The losses of chronic illness ore often hidden. Some of them can be retrieved, some partly recovered, while some are permanent. Although we tend to ignore the losses, the emotional experiences of them are planted in our hearts and minds and no eraser can remove them.

The majority of losses we experience are difficult to grieve over, especially chronic illness. Why? Because losses aren’t usually recognized as such. In chronic illness, there’s no body, no funeral, and no public shoulder to cry on. There is no traditional, socially sanctioned outlet for mourning when the losses aren’t death related. Loss of physical functioning, relationships, and financial resources are not shared and mourned. There is no printed obituary, no ‘remains’ laid to rest, no public gathering to cement the fact and focus love and support on the sufferers.”

“…But the losses in chronic illness, which many seem invisible or insignificant to an outsider, are momentous to the one experiencing them. When it’s difficult to stand or comb our hair, sign our names legibly, climb stairs, or sit in regular chairs—those are major losses. Strength moving to weakness, independence moving to dependence, feeling sick rather than well soon define our lives. Physical losses nullify some hopes and dreams.

Is it the loss that throws us so much? Or could it be our perception or interpretation of what the loss means? We want to stop the decline, which we can’t do, but we can change what the loss means to us. There is a choice! We’re not talking a denial of the devastation but an acceptance of its effects and how to move on from here. Many of us measured our self-worth and identity by what we could do in a day. Now we need to find another guide. The old standards won’t work anymore. And the old standard was never the one God used to value us anyway!”

" … [this] is not a one-time experience but something that needs to be revisited from time to time.”

~Coping with Chronic Illness, Wright, H. Norman and Ellis, Lynn, Harvest House Publishers: 2010, Chapter 6, pages 87-89 (excerpts).

Later, the authors encourage one to “identify the loss or losses you’re experiencing”(pg. 89) and how they have had an impact on your life. They also encourage one to write an “illness and loss timeline” (pg. 89).

I think that it can be rewarding to write these instances on paper. It can be cathartic to just get it off your chest, out of your mind and by putting it in writing can be a liberating experience.

I think that “not talking [of] a denial of the devastation but an acceptance of its effects and how to move on from here” is a key statement, for me anyway. I’ve often heard people say that we, chronic illness sufferers, need to find our “new normal”. Well, quite frankly I don’t want to find a “new normal”; I want my “old normal” back! However, the optimal word in the previous statement is “need”. We need to search for it and we need to attempt to find it and rein it in for our own sanity. We may not be able to ever change our circumstances, but we can choose how we react and respond to those changes. We can try to accept these changes and move forward in an attempt to regain some semblance of normalcy.

After all; we might be helpless at times, but we shall never be hopeless.

This is my wish for all of us out there suffering daily, that we shall never be hopeless!

Going From Barely Moving To Full Throttle

Over the last 3+ years I have had my ups and downs. The first year was the toughest; getting diagnosed and barely treated, I’ve had to find my “new” normal. I went from being a very busy homeschooling mom complete with teaching, park days, piano lessons, guitar lessons, AWANAS, leader of HS park group, PE classes, co-op classes, field trips…you get the picture. I was always busy, always on the go. Then I was struck down by POTS, and it has changed my life.

Instead of being involved with all of the above, I was reduced to being pretty much house bound. I quit driving altogether at one point. It has just been in the last year that I have been able to find some semblance of normalcy and attempt to get my life back on track.

Over the last few years I have begun to get back into at least some of the old activities. I have begun to drive a little and now that my daughter is of driving age, she usually does most of the driving.

Here’s what I mean about going from “barely moving” to “full throttle”…

This is my plan for the coming week:

Monday: Normal day pretty much. Wake, get gems up for schooling, and begin wash. Then, I have to take dd to a doctor visit as she has not been feeling well lately. She is anemic and hasn’t been taking her iron regularly, but also has been complaining of “not feeling well” in general. A friend of hers has/had Epstein Barr and I wonder if she might have it as well. We’ll see at the doctor tomorrow.

Tuesday: Wake and get started for the day, wake gems for schooling and take dd for her volunteer work.

Wednesday: SOS, then take dd to her college class. It will be her first day of college courses, though she is a high school junior. We are so proud of her!! BTW, college class is 40 minutes round trip twice and I’ve only just begun driving again!

Thursday: Regular day…

Friday: SOS, and kids begin their co-op classes and I begin teaching my poetry class at co-op as well. I’m already thankful that it only is for twelve weeks.

So…I’ve gone from barely leaving my home to being gone 4 out of the 5 days of the week doing something-or-other. I really hope I can handle it!!

 

 

So Long 2012…You Will Not Be Missed…Entirely

As I look back on this past year, there has been laughter, happiness, pride in my family, heartache, tears, drama, oh; I could go on and on. I am so looking forward to a New Year. One filled with more happiness and laughter than heartache and tears.

I may be helpless at times, but I am never hopeless J

Looking back on the laughter, happiness and pride in my family:

· Celebrating 25 years with Big Handsome, 21 of them married

· Being happily married to Big handsome, my husband, lover and best friend

· Watching my children grow into caring, responsible young adults

· My daughter passing the college exam in order to have the opportunity of beginning her  

       college career as a junior in high school

· My son being so talented, creative and tenderhearted

· The many vacations spent with Big Handsome and the kids

· Growing closer to God

Looking back on the heartache, tears and drama:

· The death of my mother this past fall (although I rejoice that she is now with the Lord)

· Drama surrounding my siblings, as we don’t all get along

· My poor father having to deal with said drama

· Dealing with teenage drama

· Stress of the daily reminders of having a chronic illness

This year I want to focus more on the positive and so much less on the negative. I want to be that kind of person that can “look on the brighter side” not the type that sees the “grass as always greener”.

Here’s to hoping that you all find happiness and joy. Actually, these cannot be found, but must be chosen. It is my hope that you and I have the ability to choose these for ourselves, our lives and our sanity.