Muddling through...

I don't write like I should - the time and energy slip away too quickly even though I lie awake at times just thinking, just wondering....just feeling.

The pain numbs the brain. It burdens the body. It sucks the life out of me at times. I know you know if you have chronic pain in your life. I know you know if you have some ailment that keeps you from being complete. 

You never know what tomorrow may bring. You strive to be the best you can be. You  run through the fields and onto the fire but then you burn OUT. You crash because your body has halted. It is exhausted. Not just today but always.  Yout body is riddled with agony of defeat. It is inflamed. It is shooting bullets in and out of you. It tears you down and drags you along until you cannot think straight. 

You dwell on your thoughts, the what-ifs, might of been, the what can I change to make it better. You suffer sometimes in silence, sometimes with tears, sometimes with a fierceness that strikes from deep with in. 

You grieve the loss of what you had, you are strangely grateful for what you do have. 

You never lose hope.....

Why is the blog named Rising from the Fog?

Why is this blog named " Rising from the Fog" someone asked me....

And here is why.

You know what fog looks like, kind of mysterious in nature, like mist hanging over a piece of land so thick, you cannot see in front of you. Never mind trying to tread through it. Well honestly, for a long time that's how I have felt in a way.

One of my major complaints before diagnosis I had been complaining that I had a loss of focus, that I did not feel as sharp as I once thought I was. I couldn't concentrate for any great length of time - In a sense, I felt foggy.  My brain worked and yes, I forget things and I am a little OCD on certain things but I knew somewhere in my brain what I needed to do, but it just wasn't clicking with the other parts of my brain. Trying to make sense of it all seems impossible at times. Those who suffer chronic illness can probably understand it first hand.

You just aren't yourself. Its confusing and its painful emotionally. Its frustrating and humiliating. Its just one big cluster of junk all put together like tangled Christmas lights you cannot unravel. 

In knowing all of this, I over -compensate when I am "on". I keep running until I am dropped to the floor and can only lay there - emotionally and psychically spent. 

Strange as it may be, yoga has definitely helped because in yoga I have to surrender and learn to see the bigger picture in the small footprint that is me. I am forced to just let go and rise from the fog, even if still foggy.

Its been awhile

Oh what a whirl wind I have been travelling on....and it seems that the ride is still going...

I am not sure where to start....

Because of my condition Paul and I decided to make a change in our live. We are headed south. We hope the more temperate weather will help ease some of the pain that I live with daily. We hope that I can start to see the value in myself again and will be able to be productive.

So in the past 6 months or so, we bought a new home, a business and the moving van is making its way here to pack our stuff and head South.  We chose Hilton Head Island, SC mainly because of the opportunity given to us and the proximity to my parents. We weighed the pros and cons of my health care, his work, and our lifestyles and want and where we wanted to be in a few years. His job is still there - he will be working from home for most of the time and will spend 3 to 4 weeks at a time up North 3-4 months out of the year. Not a bad compromise for the security its giving us.

Doing this will allow us to spend more time together that is quality driven. I am not saying its a remedy to erase the pain because I am realistic. But it is one of hope...

Today I sit in Southie, staring out the window, remembering when we moved in together, wondering how we accumulated so much stuff and how leaving is so bittersweet.

I will not miss the feeling of being confined because to climb three flights of stairs is a lot when your hips, thighs, feet and arms are always screaming. I am not going to miss how I have felt since I have flown home - cruddy to say the least. What I will miss is the colorful characters who walk the streets. I will miss being able to walk to downtown Boston (which I haven't been able to do in a few years). I will miss the history and the sounds of the metro bus outside the window.  I will miss my friends and family.

As you know leaving family, can be rough and I know that we will live each day torn with the anguish of leaving some of our dearest family and friends. However, a true friend never leaves your heart...and they are embedded in your soul.

I am looking forward to the next chapter...

Pace Myself? Seriously?

In my little world, pacing onself is one of the skills you must learn or adapt to. For many its such a diffiult task and just another thing we need to add to the list of “to do's”! I

For me, its an admirable skill to watch in action. Primarily because I find it harder to do than most anything else. I am a type A personality trying so deseparetly to live a type B life. Maybe by the time I am no longer able to care for myself I will have figured it out.

Intellectually, I know that I need to practice pacing and for all that really care – self patience. It seems I am more patient with the rest of the world than with myself. And I think for me they go hand and hand. Emotionally, I want to run with wild with the horses by the sea....

.. So every day I wake up and think to myself about everything I want to accomplish. I check in with my body to see how its feeling. Where is the pain is the most severe, what is crippling me and what may work. I know I want to do my yoga because even if it hurts – I know its so good for me! I know it’s the right thing to do and my body will thank me later. I know I need to fuel my body and of course that brings the additional stress - what to eat, what my body will handle today without wreaking havoc on my stomach …God, my stomach has been through hell! I am trying to learn to be gentle with it. It’s not always easy. 

There is life beyond eating, and in order to feel human I need to do something productive and practice being functional. Thoughts running through my head -  can I clean the house, go for a long walk, have lunch with a friend. Or is it a day for sleeping and stretching. Who knows….and this is where pacing will go out the door. I can see my brain saying go for it, and there is no stopping the inability to pace unless something stops me first.  Yep just like that….in a moment it is gone….because if my body is working, I am going to fight to the finish to get as much done as possible. The warrior in me wants to fight and win the war but you know and I know, if I take on the battle I will eventually lose. I always lose this battle and yet I go on and on thinking one day I will win. Is this the mindset of someone trying to retrain themselves or someone who is beyond help and will just funnel down through the rabbit hole.

I ask, is my problem really about pacing or is it about self-control, or do they go hand and hand, and the list goes on.  I ask, is it about pacing because I know I really don't practice it - well at least not well. I don't know. Its all so confusing and seriously, I get a headache thinking about it. I get a headache thinking about pacing, which is a practice that my body needs to attain...kind of ironic. And with the feeling of being defeated, I will take myself to one of my favorite spots...sit back and watch the waves rush in and fall back, ebbing and flowing through their cycle. Why, because this I can do well...at least for a little bit of time.

Changing lanes, Changing life.

Isn't it funny how changing lanes on the highway sometimes can reduce your stress, it can change your attitude, therefore, change your life, your well being........

Paul and I have been talking about moving for a few years now to Hilton Head, South Carolina. Its a place that brings me comfort and peace. Its an oasis of sorts. Paul started coming down with me 7 years ago when we first started dating. It is a place for both of us that allows us to be more active outdoors, spend more time on the beach or in the water - which is something we both love. It brings a calmness to our souls.

The decision to move away from family and friends is never easy. You become torn between not wanting to leave and wanting so much to have a different quality of life - one that is more authentic to you.  For me, the move to Hilton Head is easier. My parents are in Hilton Head. His Mom is not (although she is always welcome). His kids are in MA, and the list goes on and on. So when it came to making the decision of when, I really had to step back and let him figure out what he truly wanted and give him the space to bring it to me when ready.

At the same time, life gets in the way....with the pain that I feel daily and other complications that surround my illness, making a decision sometimes fast forwards itself. My pain was only getting worse and I was dragging myself this place and that place trying to find a quality of life that let me get off the couch and be more active, more productive. So we decided together to make the move this year. The more temperate weather is supposedly good for the body.

We got lucky and were approached to buy a small business. Something that would bring supplemental income while we try to settle in to our new surroundings. Our plan is laid out so the transition is slow and accommodating to both of us......

As a result, I am currently in Hilton Head. I have been here for a month. And while its been a quick four weeks, it also feels like forever since I have seen my love. I miss him so much.

However, on the flip side, I am settling in. Yes, I am still wiped beyond words, I have pain all over but its not as extreme as it has been. The temperate weather is helping. 

Its strange how one thing can change the direction of my illness and give me some sort of quality of life I am searching for. I know there will be difficult days, I know I will always have pain. How I choose to control it is how I change lanes, therefore changing my life.

Redefining Me?

I would have never thought I would be trying to figure out how to live again.  It seems to be an ongoing theme in my life.

Years ago, I started over because of a divorce. I started over again and again after several layoffs and today, I find myself starting over again because of illness. Strange how that is to me. So foreign yet so familiar. This time (over the course of a couple of years so far), I am so unsure of my being. I am stuck between my will and my ego. I am in a war with myself.

The limitations - physical in nature, is something I did not have before. I used to be able to go to the gym and work out to my hearts delight - pushing myself to another level. Today sometimes lifting a jar of peanut butter can be taxing. My mind is all clouded and it is not as sharp as it used to be which brings on total frustration. How can I get that back, will it ever come back. The pain, what is the scale of pain and where does it most hurt...here, no here, no there...ask me in a minute, my answer will change. But even bigger than that, am going to be paralyzed by it for the day by it.  I know that my body is broken and that the stomach hates me and my liver is not in the best of conditions. In fact, the condition of the liver sucks but its just a fact of my life. I know foods I once loved make me sick. I know my hair used to be thicker and shaving my legs is no longer an issue. (some of you are really, you don't shave your legs, but when the choice is taken, the whole mental thing comes into play.) I know I am stuck in a place where obstacles are a daily word and sometimes there is no getting around them without changing who I am and what I can do. 

I know I have had choices taken away from me before - I had a full hysterectomy at 27. So the choice to carry a child was never an option. Kind of ironic, I wanted a house full. And its not that I wasn't graced with children, I was through my first marriage. I am a step-mother to three amazing young women. And even now, I with Paul, I have two amazing young adults in my life. So yes, I have children - five to be exact, all grown, some with children of their own. I am blessed. 

But I digress....how do I start again? How do I redefine my dreams, my hopes, my passions, my world? To be honest, its such a struggle in my head. It's the war between the wants and can haves. Intellectually, I know what is best for me and how to make the best of a not so great situation. Emotionally, I suffer because I almost feel as if I have let myself down. Granted, I have done everything I need to do from a medical standpoint. I see the doctor (way too much), I stretch, do yoga and even exercise. I eat fairly well, I educate myself. I use the modalities taught to me by professionals. I just don't know where I am going at times. The things I so wanted originally for myself and Paul are in the past. I cannot have some of them. Maybe, I am trying hard to save my dignity in a way; to salvage my dreams....

One small step brings me into today. One small step each day is a part of my evolution. Am I really redefining myself or is this all one big master plan? This is what I will most likely ask myself for years to come as I find passion in things I never dreamed of, live life to the fullest of my capability. My dreams and hopes will change colors as they ride through the wind and I am grateful to have them.  I am breathing! I am learning to let go and be filled with grace and humility. I am surviving to be the best I can be. I am living in today. 

Without self-care, self-love; we are not whole,only pieces of shattered glass.

In life, we often take too much for granted, such as self care, self love.  Like glass, life is fragile. When it breaks it shatters, sometimes into tiny little pieces and we can get lost in the midst of the daze of crackling glass all around us.

This past weekend, one of my best friends lost someone close to her. A family member. The passing came sudden and this person was far to young to leave this earth. No one saw it coming. No one can believe it happened. The shock and devastation have left this family feeling as if their heart was ripped from them. They are moving in slow motion trying to figure out the pieces of not the loss of their lives too on how to walk through moments, the hours, and days ahead without their loved one. 

Its all so unsettling to think about. My heart breaks for my friend, her husband, her sons and the extended family. I cannot take away the pain. I cannot put a band aid on it and see it heal. Life is not like that and neither is death. I can hold her hand as she tries to mend the heart of her children and help her husband battle his pain. I can listen and let her know she is loved.  Most of all, I can remind her to take care of herself, that her life is priceless to all around her and she needs to be the best she can be - for herself, for her loves. 

It also reminds me, that my life is priceless and my ability to be the best I can be is essential to my well being. Having the medical issues, I have are obstacles in my way to my optimal health. I cannot let those keep me down. Self- care is a priority. Self-love = a better life.

<3