Mind versus Body

Hey strangers,

I know it’s been a long while.  Just thought I’d jump in where I am, rather than trying to catch up.

Came across this today, and it was just what I needed to hear.  Thought maybe some of you needed to hear it as well.  The anger I feel when my body isn’t functioning the way it is *supposed* to, is intense, it’s absolutely hateful and unfair.  I can only recognize this and gain a healthy perspective by asking myself how I would advise a friend that was suffering with chronic illness, because well… these things with me can be quite the double standard, as I tend to have a rather abusive relationship with myself, and would never treat anyone else that way.  I know (intellectually), that it makes things worse when I dish out negative self talk, self sabotage, etc, however, it is so deeply engrained as my “go to” response to feeling poorly, that changing this habit is like turning the Titanic.  One of my goals in 2015 is to treat myself with respect in this regard, and take better care of myself.  In order to do this, I will have to work on forgiving my body for not doing what it’s supposed to, acknowledge that it is suffering, and come to some sort of peaceful relationship.  Not going to be easy, but I will persist!  Hope this encourages you to do the same.

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I Try Not to Hate Her

I try not to hate her

But I do.  I really do very often hate her.

She’s just so awkward.  She can hardly put sentences together.  She repeats herself constantly, and can’t seem to remember that she’s told you that same thing over and over again.

She used to be sharp.  When she had something to say, she could find the words easily, quickly, without all of the frustration.  I really thought she was smart.  That she was going to do big things.  Now, she often spends so much time trying to find the word she was looking for that she forgets what it was that she was going to say in the first place.  It’s like she’s become… unintelligent, and scattered.

She used to be passionate about taking care of herself and she was really active.  She loved to exercise.  She would go running, go to yoga classes, do workout videos at home; she even loved playing basketball… she was super competitive.  I really thought she’d always do those things and even wind up trying new things as life went on.  But now… she hardly does anything honestly.  She looks tired all the time, she looks way older (even though it really hasn’t been that long)… and she’s completely out of shape.  She gets completely drained from the most basic activities and complains about stupid things like the heat outside on the way to the car, then winds up frustrated because the a/c bothers her once she’s inside again.  It’s kind of ridiculous.  If she sits down for like 30 minutes or so, she acts like she has trouble standing up and walking after that (you’d think she was in her 70s), and by the end of the day she seems like she really can’t walk well or stand at all without some kind of support.

Things were so different before.  She used to care about her appearance.  She would take time for herself, you know… she spend time doing the things that make a girl feel pretty.  It’s all so different now.  I mean, she was never the type whose favorite pastime was spending hours at the mall, but she at least used to care about looking nice.  At this point the only time she buys clothes or makeup, (or even just takes time to shave her legs) is when she absolutely has to.  It’s all just a chore now, and there’s just no room in her life anymore for that kind of thing.

I just get completely frustrated with her.  She knows that she should do certain things… like exercise, stop binging on junk or alcohol when she doesn’t feel well, or just go to the doctor for God’s sake, but she can’t even bring herself to pick up the phone to set the appointment.  She just sleeps, then works, then sleeps again, it’s like she doesn’t really connect to anything else anymore.  I don’t know… I guess she’s at least made some progress.  She’s been going to counseling for a little while now, and I know she’s at least trying to become more aware of doing basic things like drinking water, and stopping to eat during the day.

I wonder what her husband thinks though.  It has all got be pretty disappointing to him.  To think you are marrying one person, and years later wake up next to a completely different person.  They got married so young, so things went from this young woman who was ambitious and energetic, to *this*??  I honestly don’t even know how he can look at her sometimes.  It’s just sad.

Before all of this, she was way more involved with things around the house.  She did most of the cleaning, made grocery trips, cooked, and spent so much time with the kids.  Now she’s pretty much come to expect everyone else to handle the things around the house and really doesn’t even have the stamina to send the girls off to bed at night because if they have questions, need help with anything, or put up any kind of fight about bed time, she gets irritable and winds up not being able to handle it.

The sad part is, I kind of feel like things are just declining.  Lately it seems like it’s becoming harder and harder for her to do things for herself.  Her hands are curled up into an odd shape most of the time, like she has to force them to do their job, and she suddenly has to ask for help to do simple things, and I know that has got to be humiliating.  I’ve actually seen her give up and put things back away versus ask for help again with something that she *should* be able to do, and I don’t blame her.  I honestly wonder how much longer she’ll be able to drive, or to do her job.  It kind of seems like it won’t be long until she can’t handle these things either and winds up spending all of her time in bed.  What will happen to her marriage and relationships then?  Not that she really has many relationships anymore…

She’s got to be lonely.  She’s a completely different person than she used to be.  She doesn’t talk on the phone or go out with friends.  Well, she honestly doesn’t reach out to anyone or anything beyond work or family.  I think she’s embarrassed of how out of control her mind and body are… and it’s frustrating to try to have conversations with people who knew her then and be compared to who she used to be.  There’s no comparison.   I mean, people understand change to some degree, but this is not just the normal kind of change that comes with time and life… she’s a completely different person than who she used to be.  And if you can’t articulate things, if you can’t keep up… how can you really have friendships anyway?  Aren’t friendships built by spending time together, talking on the phone, going out, etc?  She can’t really handle those things at all, and when tries to, she’s winds up being so distracted because of being in pain that I’m not even sure she’s really connected to what’s going on.  I’m pretty sure she’s in her own world.  Like she’s watching and listening to life from another dimension.  It even seems like any little thing, even just a 10 minute phone conversation, or trying to go out to dinner,  is so draining to her that if she even actually gets herself to do these things, she winds up stuck in bed saying she’s exhausted all day the next day (or possibly several days).  I don’t know how she can live like that.

It’s like her life is just passing her by.  There are seasons these last few years to where she has actually spent weeks at a time in bed, never leaving the house, needing help with every little thing, and she doesn’t even get up to take a shower.  It’s like she’s just ok with missing out on her life, like she’s not even going to try anymore.  Her kids are growing.  They have grown, so much.  Kids can change so much in 7 years, and she’s missed so much of it just spending her time sleeping and working.  I don’t know how someone can live like that.  I don’t know how she stays motivated, or how she can really be happy like this.

I know I shouldn’t treat her so poorly.  I want to be proud of her… I want to love her for who she is now.

I try not to hate her.  But I do.  I really do very often hate her.

How to:

  Someday, I’m going to write a book titled:

“How to Stay Sane While Owning a Company, Dealing with Chronic Illness, & Being Devoted to Your Family.”

  It will be a short read…

  The text will be something along the lines of:

“I have no effing don’t have the slightest idea.”

  (Edited that to make sure I can have a broad appeal.  Don’t want to lose the potential audience that may not purchase my book due to my potty mouth).

  All proceeds from the sales of my book will go towards the worthy cause of buying yours truly liquor.

  Thank you in advance for your support in this venture.

The Worst Friend in the World.

To the long list of you whom I have called, intended to call, or still call, “friend”:

 

I know I owe you a novel, and I know it’s been ages.  I think about you so much, wanting to know how you are, what’s happening in your life.  Wondering what life is teaching you, how big the kids have grown… ugh… you know… just missing you.  I feel like I should apologize to you for not communicating, but to be honest…I just have to do the best I can, and I have truly been doing that.  Life is just full.  Full, in an overwhelming, mental breakdown kind of way, and it has been on that ledge for so long, I feel like I can never quite get my footing.

I was remembering the other day about how much life changes when you add a baby to your family. When you have small children in your home, it’s like everything is put on hold… time passes and you feel like you’ve gotten absolutely nothing done.  You lose touch with people, your house is a mess, you often forget what day it is, and it seems impossible to do anything you used to do; and then it hit me:  Five and a half years ago, I had a baby (making me the mom of two beautiful, and all-consuming little girls), opened a business, and was diagnosed with a chronic illness all at the same time.  These are those *events* that turn your life upside down, the kind that change your course and knock the wind out of you.  I know that should be obvious info to me, but though I wouldn’t deny those facts, I don’t give myself the same grace that I give other people.  I still want and often expect myself to be the same me that I was before, and I feel like I owe it to you, as my friend, to be that person.

The baby is in Kindergarten now (her sister about to turn 13 and make me the proud parent of a teenager), the business is bigger than me, and well, the chronic illness… it’s now more familiar to me than being healthy, and what I keep hearing in my head is: “I am the worst friend in the world.”

I know, I know.  I shouldn’t allow negative self talk like this to continue playing on repeat in my head.  I’ll work on that, but for now it’s sincerely a struggle not to beat myself up when I see the gaps forming in my relationships and the missed opportunities to connect with others on a personal level.  So many unreturned phone calls, emails left without response, Facebook messages, party invitations, dinner invites, texts I never acknowledged, cancelled outings, and even a standing list of good intentions on my end to begin cultivating new relationships…I’m pretty sure that to a lot of people, I am perceived as a total jerk, and more importantly than anyone’s perception, I sincerely feel the disappointment associated with the degradation of these relationships.  I want to make room.

My reality is this.  I have a shorter day than most people to work with.  In order to function at a level that my symptoms are manageable, I have to sleep about 14 hours or more a day.  When I don’t do this, my symptoms slowly take over and I gradually work myself into being “grounded” and stuck in bed completely for days or weeks on end.  So, as a rule, I make it my goal to get this much sleep.  To keep things interesting, spontaneously, I get slammed for what seems like no apparent reason, so I am always “on call” to my illness.  But, on the good days, sleep is usually the best way to keep things under control.  Another part of maintaining some sort of control is with my diet.  Processed foods pretty much wreak havoc on my body, so it has become a huge priority to try to keep a more natural approach to what I eat, and that has carried over into how we eat as a family.  We try very hard to primarily eat “real” foods, which of course is a huge transition when this was not a previous way of life, and takes a huge investment of time, organization, and money… which, while we’re on the subject, has anyone else out there noticed a shortage of these things these days, or is it just me??  Weird.   Oh well…  Somewhere mixed in with the health priorities, I get small bursts of drive to seek medical care, and invest into myself by pursuing tests, going for checkups or treatments, though admittedly this gets neglected (ironically due primarily to a lack of energy), and often feels impossible to “stuff” into my day.

Next, I have a family that I love.  When I am physically able, I want to spend as much time as I can, attending my daughters’ school functions, listening to them talk about their day, reading books together, chauffeuring them to activities, being involved.  I’ll take it, whatever I can get.  I have sacrificed so many of these things over the years because of being forced out of the game by physical limitations, but every “good day” that I have, I want to take advantage of the opportunity to spend time with my family (though it never does feel like enough time is spent here).  Dates and alone time with the hubby have recently been re-defined.  Attending the kids’ activities, riding together in the car, watching a 30 min sitcom (while falling asleep) at the end of the day, or having a business meeting to discuss pending decisions are now qualified as “dates”.  For now, we are gonna roll with it and look forward to future seasons of a more romantic scenario.

Filling the rest of my time and life, and constantly threatening to encroach upon the above two areas would be the business.  When my youngest daughter was 3 weeks old, and life was feeling rather simple and peaceful, I decided that it was a great time to go get my DBA, and pursue a dream of entrepreneurship and open my own company.   My dreams and vision have always been *huge*, but I had no idea whatsoever what this journey would mean to our future.  I opened a photography company, intending on specializing in family portraits, working with children, newborns, maternity sessions, etc, though my previous background was in the wedding industry.  Slowly this initial vision evolved, and one step led to another, and the company gradually transitioned into a wedding photography company.  I created a monster.  Seriously.  It is bigger than me and sometimes feels so overwhelmingly out of control I feel that I want to go to the airport and take a flight to an indisclosed location and hide.  That is not a joke, but a sincere feeling of desperation at times.  Obviously, it did not get here overnight… and obviously, there was a night and day effort and investment on my part to create said monster and drive it forward… but… I plead ignorance.  I knew not what I did.  With my husband partnering with me in this venture, we now have a team of 14 of us that actively make up this little company.  We are currently holding interviews to add at least 5 more people to the team within the next few weeks/month, and looking at the growth ahead, I can only see that expanding.  I love this team, and these people, and am devoted to continuing to do everything I can to provide opportunities.  I am completely passionate about this.  But as people generally do… each member of the team comes with their quirks, demands, differences, excuses, strengths, and weaknesses, and at the end of the day… I’m mother hen, and when people want answers, want money, or want to complain, I have to be available in this way.  The number of clients that keep us in business and the demands and expectations that they place on their service from our company, combined with the pressure of handling one of the most important days of their lives, is not something that I can take lightly, and has become severely intimidating to me as we continue to grow.  As a matter of fact, it is a complete discipline to stay in the moment when the time has come for me to rest or spend time with my family because of being so distracted by my emotional ties to this responsibility.  As you can imagine, the whole 14 hours of sleep a day concept often gets compromised and I run myself ‘till there is nothing left, in efforts to keep up.  The scary thing is, we are really just beginning.  This past year has been the most rapid season of growth that we have ever seen, and the growth just keeps coming.  Not to mention that we are expanding into other ventures.  You see, I want to devote my life to providing opportunities to help people reach and fulfill their potential, and I also want to leave something solid behind for my family’s financial future.  I have to say though, had I known that the path to this goal entailed being stretched and pushed in the ways that Derek (my husband), and I have been over the course of these last few years, I don’t know that we would have had the courage to open this door.  The business is a story for another blog…or maybe a book…?

You wanna learn what you are made of??  Get sick.  Or open a business.  Or… hey, do both, and why not add to your family while are at it!

Ok, so there’s my life.  Summed up neatly into three parts.  Somewhere stuffed into all of this, are the intentions to exercise, have a spiritual life, take time to relax, aaaand, you guessed it…among other things… to connect with friends.  Family commitments ebb and flow, as does the business, and as do my health issues.  But I either have to choose to wait for that absolutely rare moment when all of these things align in a way that makes room in life for more, or just try my best to keep reaching out in between the cracks, and in the midst of the chaos in a very messy and extremely inconsistent way.  Usually it’s the latter, and those efforts are so spaced apart and so sporadic that I often end up just opening one side of a two way effort for communication, only to walk away and get caught up and consumed by one the above mentioned components and therefore confirming my theory that I am very possibly in fact the “worst friend in the world”.

One thing that I know for certain that I can always trust and count on is the changing of seasons.  For now, I’m going to put my hope into that, and embrace the “in betweens” that come along.  I guess by doing that, you might say that I’m being a pretty good friend to myself, and in the grand scheme of things, maybe that will make me a better friend to you when our paths cross next.

 

 

A Few Minutes of Being Me

Ok, this is probably going to be one of the most honest blogs I have written about the details of my health and all that comes with it.  But, my commitment to myself and the readers of this blog is to be transparent so that I can use this illness for good, and so that I can have a connection with others that are experiencing the same or similar things…honest is good.   When you begin to suffer with symptoms that are not mainstream or that you can’t find answers for, you begin to question your own mind and can often feel self conscious and even embarrassed of sharing with others what you are feeling.  There will be people that think I am wallowing in self pity by expressing what I am feeling, there are those that think I have an overactive imagination, and of course there are PLENTY of obvious antidotes that can just roll right off of your tongue when it comes to things that you haven’t personally experienced.

I am so very aware of how easy it appears from the outside.   If you are reading this, and you are healthy & well, please keep in mind, I WAS you.   I can compare my life before being sick to my life now, and I am the same ambitious, intelligent, and passionate person that I was before.  You see, I’m just stuck inside of a body that is really pissed off about being here, and is not capable of handling things well.  I do not make things up for attention, believe me, I have better things to do and would rather spend my time on those things.  I did not get here by having a degradation of my emotional state of being that in turn led to me being physically ill (though, if any of you are dealing with that, I know that this is very possible, and that psychological illness and emotional disorders have the same stigmas attached that chronic ones do, so I respect the gravity of your symptoms and struggles as well).  Am I depressed??  Do I get discouraged, and lose hope sometimes?   Well, hell yes I do!!  ANYONE would if they were in a state of physical distress for years on end, it’s not a picnic kids.

I just fucking got sick.  That’s it.  My systems have gone a bit haywire and I am on a journey to find REAL answers about the cause and am not ok with a blowoff umbrella diagnosis that in its name basically translates to: “We don’t understand it, millions of people have it, and we don’t know how to help you, but… maybe you should try these new meds just in case.”  There is a cause, there is something wrong, and I’m going to persist on my quest to make it right because I have a life to live.  You can preach on having a good attitude, but really, can you tell me where that measuring stick is?  What are the qualifications for having a good attitude?  I’m not exactly sure, but I think considering the day to day situation here, I have a pretty damn good attitude by even attempting to have a life in the middle of this.  And not to toot my own horn here, but I do more than just “attempt” to have a life.  I apologize if this all sounds bitter or snide, but geez louise!!  If you have *ever* been in a minority, you quickly recognize that ignorance breeds speculation, speculation breeds superiority, which in turn breeds pride, which then breeds a lot of loose lips, resulting in an entire classification of people that are rejected, isolated, and made to feel as if they are lesser beings simply because the people in their lives don’t have the time to educate themselves or to truly listen without passing judgment.  Well folks, I’m in the minority, and it just sucks sometimes to be made to feel like less of a human being because of that.  Phew.  I’m a little fired up (Earlier I said “most honest” blog, but it’s just possible that I should have said “most profane”, sorry bout that). 🙂

Back to my blog that I originally intended on writing before I went on the above rant.  I’m going to give you about TWO minutes of being me.  I say TWO minutes because beyond that, you would seriously get bored, and I will let you just stretch your imagination to putting this track on repeat for 5 years at *this* level, and about  4 years before that of dealing with symptoms like these on a smaller scale/individually.  I have a handful of chronically ill friends that follow this blog, and whose blogs I follow, that could fill in their own version of this for you,  and MILLIONS more that are in the same situation and don’t have the support or emotional strength to keep fighting.

Starting the clock now:

My eyes are so sore that I literally feel pain every time I look a different direction.  They are heavy, and puffy, and blurry, as if I haven’t slept at all in a few days, though that’s not the case.  From my fingertips up to my shoulders, continuing that from my neck down to the bottom of my feet, I have a painful burning sensation that makes me feel like if it gets any worse, I can seriously not take it.  Nauseating kind of pain.  I use a pain scale to describe fatigue and pain to my doctors and my family/very close friends, and on a scale of 1-10 with pain, I’m sitting at about a 7 or 8, which is not a place that I am at often, but during a flare up like right now, it can go like this for days or weeks.  My right hand that I am typing with is tingling as if it’s asleep and is stiff and painful to type.   A finger on my left hand is completely numb, other than that great tingling sensation along with the numbness.  On the right side of my head, I have this fantastic neurological issue of constant pressure and pain that started a year ago, it used to come and go and now it is with me all the time.  At this moment, I would compare it to what I used to call a “bad headache”, but add to that some strange cold and dripping sensations.

 Ok that was two minutes. 

I have been in that specific state above without relief for about a week and a half now, and if you want to visit me on another part of the day, you might find a combination of these things along with daily fever, muscles jerking/tremors to the point that I couldn’t sit still if I tried, me forgetting the names of the important people in my life, or everyday objects, spending hours on end in the bathroom with cramping & upset stomachs, constant muscle spasms & twitching, me having to call someone because I am not capable of driving because I can’t stay awake, or employing my oldest child to care for her sister because I can’t get down the stairs, etc, etc, just to name a few.   Seriously, this is the general, every day experience.

When you see me, and I look “fine”, to you, please know that for me to get a shower, get ready, and get out of the house, will very possibly be all that I am able to do that day, and if I am going beyond that, know that I am purposely choosing to place value on what I am doing with full knowledge that I will be set back for days or weeks because of that choice.  The thing is, when I don’t *look* fine… you won’t see me, because if I can’t pull it off, I usually stay in and delegate what HAS to be done, & cancel what is optional.  Chances are, if I have something to communicate to you, I will text it or email it, because if you spoke to me, I would have to spend the energy explaining why I sound so bad, and that is energy I honestly don’t have.  Oh, and my Facebook…it’s especially active and lively when I’m stuck in bed, because I get bored!!  I am an intelligent person, and even though I get physically stuck, I still want to be “social”, connect with people, and share my thoughts, and I would say I could count on my fingers how many people in that world know that I am sick, and I keep it that way intentionally.

I assure you that I have been to doctors and that I have been diagnosed and that my symptoms have been explained by their diagnoses.  I spent about 8 years running tests to finally be told that the things that I am dealing with are Chronic, which means they will not ever go away.  I spent about four years after that trying various medications that can “sometimes relieve the symptoms in some patients that deal with this type of illness”, and realized that because of the drugged feeling, and the myriad of side effects, as well as potential long term effects, that this was not my path of choice for the current season.  I want to do more than identify or label the illness, I want to understand the underlying cause, and give my body the tools to function as it should.  For me that that led to the choice of going a holistic route, and styaing open to medication that can be used to treat or heal  vs just mask symptoms.   I would never have been open to this before, and I honestly don’t think I would ever have felt that there were any holes in mainstream medicine had I just been dealing with typical sickness that is easily recognized and commonly treated with medication.   After spending the last few years studying and researching my options, this is what I feel is the best choice for me.   I have no qualms with someone choosing another route, as I believe that in order to deal with chronic illness in a healthy way, you have to make it your own journey and evaluate what choices are best for you.

I have wanted to write more specifically about what I have tried, what has worked, what hasn’t, etc, however, I just haven’t gotten there yet.  The holistic route is a bit more expensive for me because my doctor is out of network, and he also recommends supplements/vitamins for deficiencies, which are not typically available by prescription.  In addition to the fact that I am trying to lead a life in the middle of this madness, it is terribly hard to drag myself to the doctor when half of the time I can’t drag myself to the shower.  This makes things move very slow, which I have had a lot of people in my life question because they feel that I am not being assertive or aggressive enough.  All of the appointments and tests that I have had run are being paid out of pocket, which means that we have had to slowly take time to pay for these, and then of course any treatment options following the tests are also costly & draining.  I can get reimbursed for some of these things from my insurance, but I am slow about it all because of having so many other priorities but limited energy.

The next step for me is a Lyme test, which is actually the primary reason that I came to my particular doctor in the first place.  After reading and researching Lyme, I found that I have such an identical pathology to Lyme patients, though it can often be hard to identify because it mimics symptoms of other diseases/conditions.  If you haven’t seen the documentary called “Under Your Skin” (you can find this on Netflix), I would highly recommend it, as it is very educational on this subject.  I actually cried most of the way through the movie, because it was like watching my life on video.  Whether it is Lyme or not, what I deal with is very similar to that of Lyme patients, so I need to at least cross this test off of my list.  I will keep you posted on the results, and what’s next.  Gotta put my pride away, and the feelings of embarrassment, or that I’m crazy, etc, in hopes that this will help some of you out there.   It saddens me that there are so many people out there dealing with us, but the fact that we are not alone is also encouraging.  By sharing who I am, I risk being judged by others, but I’m pretty sure at this point that being judged in life is a guarantee and can no longer even be categorized as a risk… so what’s the point of hiding??  If I do that, I won’t help anyone, and that is a risk that frightens me substantially more than anyone’s judgment.

Superwoman

Superwoman arrived at my house today

Superwoman… according to my standards anyway

She swooped in this afternoon & took my sweet girl for a walk

She collected Roly-Polies, decorated sidewalks with chalk

After an excursion such as this, I personally would have been done

But not Superwoman, she felt great, and therefore errands were run

Balancing not one child’s demands, but two!!  And, doing it with ease!

Chauffeuring like no other, handling traffic was a breeze

As I watched her throughout the day, she was all I wanted to be

But, when I really looked more closely, she didn’t at all resemble me.

There have been so many times, that I wished she would be here

But upon her arrival, I am distracted with my fear

Fear that when I see her moving through MY world with grace

That at any given moment I will take her place

Having moved from grief to acceptance, I felt so solid yesterday

Then Superwoman stopped by & left my progress in disarray.