Friendship & Illness

I've had the same best friend for 34 years.  Just looking at that sentence makes me blink the shock of not only a friendship that has spanned decades but that I'm as old as I am - 43.  Where do the years go?  That's such a cliche question and yet, as cliches go, they are popular because they're true.

This friend is meaningful to me, as one might suspect.  The history between she and I is full of  laughter, tears, joy, pain and growth as women.  We have seen each other through some of the best and the worst times in our lives, as girlfriends do for one another.

I sit here and recollect a hundred special memories.  I could call her right now and say things like - Go Fish & Old Maid.  Skittles taste testing.  Marlboro menthol, Joe biting Kendall, wrecking your Chevette, Arsenio Hall, Beaches, Nora bar, kicking Betsy's ass, Baby Got Back and that silver necklace, Alan Jackson, and so much more.

Random words and we would laugh until we cried or start a conversation we left unfinished six months ago, as if we hung up yesterday.  That's the kind of friends we have always been.

She is the one person (besides my younger brother) that was there for my childhood and that's important to me for reasons I won't go into right now.  She could call me in the middle of the night asking me to unlock my door and listen to her until dawn and I would.  I have.  I can't think of much that I wouldn't do for her.  On the flip side, she has done so much for me too.

And with all of that said, I feel abandoned by her through these last few years of illness.  I know I could call her right now and say, "I need to talk about being sick.", and she would listen.  But I also know she wouldn't really want to hear about it.  She wouldn't honestly try to understand what I was saying or how I feel.  I know that deep down, she would think I should 'quit whining and toughen up, get on with life', without realizing that's the point - it's impossible for me to get on with my old life or be the old me.

When we do talk on the phone, she tells me about her relationship problems and I listen, sometimes for long periods of time.  I offer opinion or advice if she asks or if I think she's receptive to it.  I tell her often the things I think are special about her, her best qualities.  I give her my empathy, love and never make her feel like less for crying.  I show her my faith in her strength as a person.  I try to uplift her, to let her know she always has me in her corner.

That's what I need from her.  It's what I have needed from her since I was diagnosed five years ago but especially now as the Fibromyalgia and some of the concurrent issues progress and become more debilitating.  I feel like she willingly give that without being asked, as I would and have for her.  That is not the case and as time goes by, she and I talk less and less and rarely see one another.   I miss her, this girl that I learned to put make up on with.

Nobody Wins The War

I never want to invalidate anyone else's illness, injury or pain, however temporary or not.  That said, I do have this type of response now and then.  I never say it aloud and I chastise myself for thinking it at all but I believe it comes from a very normal and human need to be healthy, and jealousy when we know we won't be.

I try to remind myself that there are others who have it far worse than I do and to be grateful for the blessings.  However, I also have to give myself permission to have those moments of anger, sorrow and yes, even self-pity.  It's okay.  It's necessary because we can't be strong all of the time.  We need to express everything, even the ugly parts.

I admit, even if it's only here on my blog, that sometimes when people complain of a minor illness, I want to shake them and scream.  I want to tell them they have no idea.  That they know nothing, Jon Snow.  I want to beg them to switch bodies or lives with me, even for one week, so I can remember what it feels like.  I'll gladly take their cold or stomach flu for six days if I get just one that's free of pain.

The flip side of that coin is that whomever switched lives with me would have to live mine for a week.  I know we may think that we would like those that do not believe or understand our disease to live with it for a week or even a day so they finally have some empathy and compassion.  But, I don't think any of us could actually do it - knowingly inflict this upon another person.  I couldn't.  Not even for one day of freedom.

Fibromyalgia is a war with no end.  Winning is only found in getting up each day to fight another battle.

I Like The Word Recluse

Okay, so I did this list of my favorite love story movies here on the blog and that took up a lot of time and space.  But, I enjoyed it and sometimes it's good to get away from the subject of chronic illness, which is, over all, what this blog is about.

While writing those much more fun posts over the past few weeks, there have been some developments with my health that I want to share.  Also, I've read some great blog posts in that time that I'd like to point my readers to.  And lastly, some research and studies that I've stumbled upon.  The next few posts will be about all of that stuff.

To start with, I thought I would share something that I told my Love recently and maybe some of you can relate as well:

Most of the time, I'm okay with what I can do now. I have a better handle on the limitations and I don't let them get me down like they did even months ago.  I've felt like, and even said - it's fortunate that I'm a homebody type of person and always have been. It's the one area where my personality actually meshes with having a disease that debilitates.

That said, there are times that I want to go and do things. I want to get out of the house and go shopping for a few hours, out to lunch or a movie.  Spend time with friends or family.  I want to breathe the air outside and smell which season it is.  I recently learned that I'm vitamin D deficient and I'm not even surprised since I rarely get out to feel the sun on my skin.

Learning to manage this life has been a struggle.  It's better now but I have my moments. I still push too hard at times.  More often though, I lay down, sit down, rest or say no, cut things shorter than I once would have, or I don't go.

I've tried to narrow my world into exactly who is most important to me, doing what means most to me, what makes me happy.. realizing that energy levels and pain play such a big part in my decision making now.

And I'm okay with that almost always.. but once in a while, that world seems to close in on me and I want to be a butterfly for a little while. Or now and then, I watch those I love and their wider world and I want to join them in it so much.

Should I Write The Book

I'm trying really hard to finish writing this piece on.. well, I don't know how to explain it yet.   It was inspired by a book - Fly Away, by Kristin Hannah.  For any of you who have never read her books, I highly recommend that you do.  I cannot say enough good about them.

Fly Away is the sequel to Firefly Lane; books that traverse a friendship between two women from childhood to middle age.  One of the women, Kate, is dying of cancer at the end of book one and book two is what happens after she passes away.  How her husband, children and best friend, Tully, handle it. 

I began writing my own thoughts inspired by the books a few weeks ago and then stopped, meaning to come back to it later that day or the next.  I do that too often, begin writing and then not finishing because I get busy with life and lose the moment - being tapped into that introspective and creative place.

I have a hard time taking a break and coming back to write something because of that feeling of having disconnected.  Like I hung up the phone, waited a month, called myself back and tried to resume the depth of a conversation.  The flip side of that is that some of the things I write are so emotional that it takes a lot out of me.  I end up feeling drained by the process of putting heart, mind and soul into words and on the black screen of my text editor.  A break is sometimes needed to recenter myself.

Just like remembering painful memories and having to relive them in a sense, so goes writing what you think and feel.  It's a constant state of self-exploration and analyzation.  It's work.  You write, you go back and read later, you know that this word or that word, this phrase or that one, isn't quite right in its explanation.  It's back to the drawing board of your mind to find what you really meant to say and how it needs to be said.

Finally, this morning, I took the time to sit at my desk and read what I had written weeks ago.   I cried.  Not a lot of tears but I felt this intake of breath, a gasp that was barely audible and then the slow spread of emotional pain until I had to wrap my arms around myself, rock backwards in the chair and look up at the ceiling for a moment.

But in those few seconds, I also realized how good the piece is.  One of my best.  I rarely have those times of feeling pride in my writing.  Of being able to look at it from outside of the box, like I'm a stranger reading it and thinking - Wow, that's good.

Today I did.  I read it and I could finally see what people have said to me - "I can feel you, feel what you're feeling, in the words."  I realized this could be a book.  It could be the beginning or part of a book on so many things:

Being a middle aged woman; a wife and mother that has given up too much of herself over the years.  That woman who is trying to reclaim some of those parts. 

What it's like to love a man for over 20 years and question it all.

A woman who is sick - what living with that is all about.  The many facets of illness and disease on those levels - physical, mental, emotional. 

A woman who has a best friend, a love that is not her husband; who listens and hears and comforts, takes the journey with her.

A woman who has to let go of her adult children and how sad and frightening that can be.  It's like giving up this huge part of your identity.  You want to reclaim your own name and everything that came along with it.  Find new parts of yourself too.  But letting go of what has been your identity for so long - mother - is terrifying at times.

Maybe that doesn't make sense.  I know I'll always be their mom but it's different now.  It's been different for a while.  My son moved out less than a year ago so the feelings of 'letting go' linger and my adult daughter lives at home so it's a delicate balance of letting go and still being there for her when asked.

I'm pissed off about this specific time of my life.

Most women my age struggle with these same issues.  They watch their children go off to college or move out and go to work and they struggle with the full scope of that.

Most women my age deal with a long term marriage that sometimes feels like it's not enough - they're taken for granted, they don't feel as if they can be all of themselves - only what's come to be expected of them through countless years, by their spouse.

Most women my age realize that they have provided their own happiness solely through their spouse and children - not themselves.  They forgot gifts and talents, hobbies and joys of their own person and fulfilled themselves only by being a good wife and mother.

They realize that nobody is responsible for their happiness, for their fulfillment but themselves.  That they have to reach out and grab for what they want, their happiness.  They have to find themselves - and that is such a Dr. Phil statement that I'd like to vomit on it.  But, cliche as it is, it's also true. 

So for women my age, there is work to be done to begin the next chapter of their lives.  For some, it's an easier transition.  Some women don't get in their own head as much as others do.  Some women don't analyze the areas of their own unhappiness.  They think - this is my life - and let it be that.  And that's fine but I'm not one of those women.

What I'm pissed off about is this:  I have those very normal middle aged woman issues to sort through, to find answers to.  But I also have to do it sick.  Having a disease permeates every area and it definitely changes and shifts some of the 'normal' perspectives of this time in life.   I'm trying to sort through and find acceptance of my life with fibromyalgia, all of the adaptations it enforces and there are so many.  It overwhelms me often.

This piece could be a book about all of it.  Or maybe four or five books to tell the whole story.  I'm nervous now about continuing it because I realize that if given the chance, I won't finish it for months.  Will I give it the chance to be the story instead of the summary?

The Top Ten Realities of My Life - A.D. (After Diagnosis)

Recently, while talking with my therapist, I began thinking about the realities of my life with fibromyalgia.  I thought I might do a blog post about that but the more I considered how it impacts my life, the more overwhelmed I became.  It seemed impossible to list every reality, every change.  

I mentioned this to Heather a night or two later and she said, "How about ten ways.  The post could be titled: The Top Ten Realities of My Life - A.D. (After Diagnosis)."  Heather recently got a new job, a career really and she was on fire with creativity so came up with this awesome title.

Here is my list of realities but I'm not sure they are in order of importance.  Even trying to sift through them all to find the top ten is too difficult.  Nonetheless, it is a list to start with.

1.  Pain.  It has become my new normal.  I do not remember my life without feeling pain every day.  I miss even the memory of that and I'm not sure when it faded away.

2.  Exhaustion.  I never feel full of energy, like I can do everything I want or need to.  I'm angry over the limitations fibromyalgia has placed on what I can accomplish each day. 

3.  Medication.  I do not like taking prescribed drugs to control symptoms of this disease.  They are pain and muscle relaxing medications and I worry about addiction issues.  I've fought addiction my whole life because of my parent's problems with it and now to feel forced into taking them is frustrating and frightening.

4.  Existential Crisis.  This is what my therapist calls it.  Basically, I'm scared because I feel that my very existence is being threatened by fibromyalgia.   I'm frightened that fibromyalgia will make me bed ridden, wheelchair bound, give me dementia or Alzheimers or ultimately be fatal.

5.  Expectations.  I often times feel as if I spread myself too thin, trying to be there for everyone, have time with them, fulfilling what I perceive to be their expectations of me.  When I think I've dropped the ball on any of that, I see it as failure in myself. 

6.  Control.  Having a disease teaches you that control, in many areas, is a myth.  Something can happen to us without asking permission, without our giving it.  I need to control how fibromyalgia is affecting my life and sometimes, I simply cannot.  As hard as I fight on every level, sometimes the disease wins because of pain and exhaustion. 

7.  Grief.  I miss me.  As much as I know that who I am, the base personality is the same - how I'm allowed to live my life has drastically changed.  I miss the Jody that was always on the go, conquering anything set before her, working hard and taking a sense of pride in that.  I miss feeling like I was strong.  I don't want to grieve my old life and learn how to live this new one but I must.

8.  Communication.  I have a difficult time sharing what bothers me, with others.  I would rather hide it.  Hide the pain, the exhaustion.  Hide my tears - cry in the bathroom, alone.  I need to be the rock and the strength of my family.  I don't want them to worry.  I feel weak when I talk about fibromyalgia.  I get tired of people thinking they can fix me - they can't fix a disease so please do not try, it's frustrating for me.  Just know how hard it is for me to open up and when I do that, all I really need is for you to listen.

9.  Stability.  This is physical and emotional.  Physically, I never know when I'll have a bad or good day within the disease.  I don't know when I'll have a flare.  I can no longer plan - not just weeks or months in advance but tomorrow.  Emotionally, I want to find a place of acceptance, of peacefulness in what my life is now.  It's still beyond my reach.  

10.  Confusion.  My life has been turned upside down.  Like a puzzle that was once put together but is now scattered across the table in pieces, I try to fit them together and make the picture clear again.  And I wonder if that picture will even make sense to me when it's complete.