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.

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Reblog: The Comfort Found in Asking for Support

This one is for all of you out there that are struggling with asking for or accepting help from others, and see it as some sort of failure or lack withing yourself.  I know you are out there…because I am a part of your club.  We can do this. Hope you enjoy the article, and this is another encouraging blog as well from the perspective of a Yoga lifestyle.  Hope you enjoy.  xoxo, Aimee

The Comfort Found in Asking for Support.

Reblog: The Fibromyalgia in my life

Another great Reblog for ya.  Be sure to click the link to see the entire post.  I am overwhelmed how absolutely similar Trisha’s description here is to my own journey. This stuff ain’t for sissies. 🙂 Thank you Trisha, for putting this into words. Well done, and I hope that you are feeling well today.

My 5 minute Tantrum

Sometimes you just have to take a few minutes to pout.  I’m pouting publicly today.  Sorry about that… This is my 5 minute tantrum.

 

The ups and downs and complete unpredictability of living with this illness is so so frustrating.  Sometimes I lay in bed at night and just dread the next day because of feeling afraid of the very real possibility that I will have to cancel everything that I have planned, call in help with the kids, and stay in bed.  It is very tough to stay balanced, positive, and embrace momentum when you have this potential looming of everything changing so quickly.  I do know that we all have unpredictability in our lives, this is just so consistently inconsistent that it is hard not to live in fear.

I have not said this to anyone other than my husband but this lifestyle has triggered quite a few phobias for me.  I have to fight with them/against them every day throughout the day.  I have phobias of making commitments because of knowing that I may have to back out on a moment’s notice.  I have phobias of talking on the phone and scheduling meetings because they tend to take so much energy and I very often only make it through the beginning portion of this kind of communication before my fatigue kicks in so heavily that putting words together becomes very challenging.  I have phobias of any sort of conflict.  I’m sure some of those phobias were there before I got sick, but now things as simple as exchanging or returning something at the store can become something that I put off for months because I am afraid I won’t have the energy to get through the line and still deal with the situation at hand.  Of course this translates over to personal conflict as well…  Also any medical appointments for me or the kiddos has become something that I avoid and put off for the same reasons.  The drive there, the paperwork, the wait, and then possibly the experience of coaching the kids through the experience is so intimidating that I feel very afraid of having to back out before I even get there.   I push myself to face these things each day on some level.  I have not truly allowed them to take over, but it is as if I am constantly in very uncomfortable territory… which I guess is not necessarily a bad thing, but is pretty exhausting.

I get resentful of the fact that I have to spend a good part of the day resting.  I want a “normal” schedule!!  I often take personal responsibility for the limitations that I have and feel like I am failing a fight when I have to lay low.  Today I tried to get up early and just push through, instead of resting as I normally would, and wound up physically sick and throwing up because I was too tired.  So back to bed for a few hours…I know on an intellectual level that I cannot control these things and just “discipline” myself through them, but on an emotional level I struggle every day to keep a positive attitude and not feel angry with myself for “giving in” to these limitations.  I hurt from head to toe today.  On a scale of 1-10 my pain is about at 6 or 7.  I know it will pass.  I know better days will come or that it may even all disappear this afternoon, but I just needed to take a few minutes to say that it sucks, I hate dealing with this, and I want it to change!

Alrighty.  This was my 5 minute tantrum, and I am moving on with my day.  Gonna be a good day.

I think I can, I think I can… 😉

The Reality of Limitations

    We often preach on perseverance, attitude, and various methods of dealing with life’s problems & hardships almost flippantly… arrogantly…as if difficulties don’t really live up to their name.  We feel confident, solid, secure in the thought that we are “equipped”, and possibly even that if we were faced with someone else’s trial that we would be more capable and handle it with grace.  However, the nitty gritty part about limitations is that when you sincerely find yourself faced with one, you understand that they are a force to be reckoned with.   The pain, resistance and the emotional exhaustion that exists when a limitation is present is real, is uncomfortable, and is cause for pause, evaluation, grief, and acceptance.  The simplistic solutions and clichés that were previously touted, once in application begin to pale in comparison to the reality of the situation at hand.  The realization comes that I may not be able to pray them away, wish them away, or will them away. In spite of this, I still believe wholeheartedly that limitations & obstacles are meant to be defied (though I have learned not denied).  The friction that forms as a result of this defiance seems much like rubbing two sticks together to start a fire.  Out of continuous pursuit & steady endurance erupts creativity, innovation, and in turn becomes this incredible strength that extends your reach and tightens your grasp beyond what it ever could have been.  A life free of limitations, trials, and difficulties is not a formula for success, often times quite the opposite.  And though life is good, it is rich, it is fulfilling, it has not been issued to us under the guise of paradise.  The ugly parts exist.  They create pain beyond the boundary that we thought was our threshold, and entirely beyond our understanding or comprehension. USE THEM as a tool for growth.  Shape them into something that they were not originally intended to be.  Do not be defeated by them.  Fight them, and yes, never tire to search for solutions, but do not cower to them.  Don’t let the experience be wasted.  Where from a distance you may see a victim or someone who is weak…I might recommend taking a few steps back.  With these limitations, I’m gonna start a fire, & I have a feeling I’m not alone.

Tears of Sadness, Tears of Joy

Tears of Joy because I have had two weeks of feeling well,  and am beginning to re-enter my life

Tears of sadness because I’ve missed a lot of the last 5 years.

Tears of joy because I am excited about what is ahead.

Tears of sadness because I am terrified of the possibility of it all being taken away again at some time.  And that is so painful.  Every time.

Tears of joy because I get to spend time with my children and enjoy them this weekend and truly be present in the moment without the usual fog of feeling poorly that is so hard to see through.

Tears of sadness because my children reject me right now, because they are afraid too. And these things take time.

As much as I have been trying lately to build my home in the center of being sick and being well because of the fear of moving back into one place or the other, the truth and reality more resembles the swinging from side to side of a pendulum, than it resembles me just sitting/settling on neutral ground.  For two weeks I have been resting on the side of being well, and I am thankful for that.  Physically, I have been resting there.  My emotions are still swinging back and forth with the remaining momentum, as are my actions, choices, and plans for the days to come.  This morning I am flooded with all of the emotion that I have been pushing inside.

Tears of sadness, tears of joy. 

Because the truth is, this is the hardest season I have ever been in.  And the truth is that somewhere along the road I lost the damn instruction manual.  So it is just me now making up the rules, taking next steps.  And it always feels that there is so much on the line if I make the wrong move.  But one foot in front of the other is the best I can do.  So here I go again.

Building a Home in the Middle

I am struggling these days to know what to feel.  My inner voice speaks to me that this is not a question that I can find an answer to, but that I need to recognize and accept the feelings that naturally exist, however, one thing that has definitely changed (developed?) within me since the first day of hearing the word “chronic” leave my doctor’s mouth, is this strange ability to bend, hold, and store my feelings and guide myself through each day as if I am a matador guiding them in the direction that I think is appropriate for that moment.  It is such a constant challenge, this tight rope act of balancing emotions without having any idea from moment to moment, day to day, where things will be.  All of us have unpredictable lives to some extent, but in general can usually make some sort of plan and expect that unless some rare, unforeseen circumstance creates an obstacle, that you will most likely be able at the lest wind up in the general direction of where you intended.  With chronic illness, you constantly have to re-route, re-think, or just surrender to what you can or can’t do in that moment.  This creates an interesting dynamic when it comes to emotion.

Often a morning of mine can look like this.  I wake up and I evaluate where I am, before I even open my eyes.  I coach myself to give the morning a try even if I feel horrible.  I start to get ready and realize that it’s not so bad after all!  Today’s gonna be one of my “good days”!  I start to plan for the day as I get my shower.  I am going to get ready, run errands, make a few phone calls, and then go to the park with my family.  It will be a good day.  I make a few calls, send a few texts and solidify my plans.  As I start to dry my hair, I begin to realize that the energy that I felt moments ago while I was taking my shower, is quickly converting into a feeling of fatigue.  I am struggling to continue to hold the brush and hair dryer because my arms are already so week and tired.  Disappointment immediately sets in.  I have already committed to myself, my client, my family, to be available to them, and in less than a 30 min period I see that I am in over my head and I need to rest.

This scenario can be played out in many different ways.  I can begin the day feeling horrible and cancel any commitments, knowing that I need to respect my limitations and get some rest, and then suddenly I can have a burst of energy and relief from my symptoms and a desire to participate.  This may go on for an hour, a few hours, a few weeks, a few minutes, it is always unpredictable and keeps me “living for the day”, which is great in theory, but when you are setting goals, and when you are dealing with people, sometimes you need to see a little further down the road.

I told my husband last night that I feel like I am driving in the fog.  I have a limited view of what is in front of me, and I honestly don’t even allow myself to strain to see past that anymore.  It hurts too much to put myself through the disappointment that comes from setting goals, or making commitments to myself or others in my life and to repeatedly feel like I am having them stripped from me.  Not to mention, this is also hard for friends and family as well.  When my family makes plans, they have learned to plan without me and if I am there that is great.  I have lost many friendships because of my need to have an “out” at any given moment when it comes to social plans.  It is tough.  People have to have some definition.

So, this week has actually, very honestly been a great week.  I feel pretty well, I have been able to get a lot accomplished, both personally, and in my work…. It is a good week.  But yesterday afternoon turmoil began within me when my youngest daughter got home from school and was settling down to watch a movie (which she is used to doing so that she and I can both have some afternoon downtime), and I announced to her that I would like to go swimming with her.  The confused and excited expression on her face both made me feel enthused and at the same time it shot a sharp emotional pain into my heart.  -You see, I can’t usually do things like this.  If I go to the pool, the heat tends to set me back for quite some time, and if I DO go I definitely don’t get in because the pain in my body always feels so intensely aggravated by the cold water.  As we were getting ready to go, she confirmed repeatedly that I was going to swim WITH her.  “Yes, mommy is going to swim too.” I would say, over and over and over again, feeling pleased with my choice and at the same time so sad that I had to reemphasize this so many times because she was afraid to believe me.  As we went to the pool, I commented on how cold the water was and how cold I felt.  She very quickly says “but don’t get out now please?”  She watched me so constantly and cautiously as we played together to make sure that I wasn’t going to get out and cut our time together short.  The time of connecting with my sweet girl was unbelievably precious and touching to me.  It made me realize again how much I miss this.  It made me long for more of this so strongly.  Of course, I always want to spend more time with my girls, but I have learned to compress those feelings and put them aside with the practical reminders to myself that I can only do what I can do… and in effort to not carry guilt around with me all of the time.

So here I am, in this good week, at home full of pain and tears.  I am so terrified of moving into this place emotionally and just absorbing and enjoying it, out of familiarity with how this typically goes.  This isn’t new territory to me.  I have had good weeks before, good months even, and I appreciate them so much, but as I begin to move into them as if they are a permanent place of residence, I put down roots, and brick by brick I build a stronger, more solid structure.  I add to my calendar, invest more deeply into my work, my relationships, and then… inevitably I get hit.  I remember so quickly that I am sick.  I had forgotten for a while.  That solid, beautiful structure that I was building now looks like giant, heavy, and intimidating work that has to be undone.  Those bricks represent progress at work, closer relationships, and appointments on the calendar, and each one translates into a number of phone calls that have to be made as I undo my commitments and explain that I have to push the pause button for an undetermined amount of time.  With each call that I make, with each sale that I lose, opportunity I walk by, and with each explanation that I give to my sweet girls, and devoted friends, it becomes more and more discouraging and painful.  And I feel that it’s possible that I got ahead of myself.  I jumped in too deep.  I tell myself that I need to learn from this, learn to keep an easier, less involved lifestyle…but… that’s very much the opposite of who I am, and I know that.

One foot in front of the other today I am walking on this thin rope that balances between the “sick me” and the me who is living life actively.  I am absolutely full of panic and fear to allow myself to settle into either side, so I am clinging to this rope desperately.  I know there are healthier ways, but I am a work in progress… and today this is what I’ve got.  I look out to my left into the beautiful view of this lovely lovely life full of smiles and cuddles and great conversations and a successful business woman providing for her family, and then I look over and see the view on the right.  It is so familiar, but so trying.  Even when I am there, I sincerely try to have a good attitude and positive outlook, but I never for a moment stop longing for the other side.  Is it possible to build a life in the middle?  Can I sit on the edge of a canyon and build a home there?  If I do, will anyone sit with me?  At least build a tent there for passing through?  At this moment that is all I am ready to do, and all I am hoping for.

 

Health of a New Kind

I’ve been waiting for the blog fairy to pay me a visit and sprinkle a little inspirational dust my way, but it’s been a while and I am beginning to realize that she may just not show.  So with or without her, I shall proceed.

Today I find myself feeling hopeful as I look towards a new week and what I also believe is a new chapter in my life.  I realize that I have been in a very lengthy “waiting period” as I have been waiting to find solutions, waiting for recovery, waiting for healing, for answers.  And life, as it tends to do has continued to go on around me and has not waited for a moment by my side.

So that brings me back to today.  Today I recognize that I have been neglecting a number of areas in my life.  Areas that contribute to making a person feel like a person, a woman feel like a woman,  an individual feel like an individual, and I know that is not acceptable and nor is it helpful to me as I try to grow and go forward.  This realization didn’t actually start today.  I move way slower than that!  I have been processing and analyzing these feelings for a number of weeks and am just now beginning to give all of this a little shape and meaning.

I have been taking some new steps with my health, which I will write about in another blog, but the bottom line is that I am beginning to see little glimpses of hope in the possibility of becoming stronger physically.  As I began to let this hope slip in (which for the record, at this present time “hope” has to be very persistent to get through the walls I have created over the years in this area in order for me to even acknowledge it slightly), I simultaneously,  gradually began to feel more and more unsettled inside. In fact, I felt so absolutely conflicted and unhappy with my present circumstances and longing for newness that as I was walking out of a store with my daughter I suddenly and impulsively grabbed an application and applied for a job there!   Mind you – Intellectually I know that a new job is not the answer, and particularly one with such limited flexibility, but the need to feel qualified and capable, and the need to feel   human was becoming so strong that I just wanted to grab on to any change as if it were a string tied to a helium balloon and just float away with it.  I actually went on to apply and get offered several jobs over the course of the next few weeks, only to be reminded that the opportunity for income and the flexibility that I require is at best where I am, in my own company.  I am thankful for the gift of being able to do what I love to do and do it in an environment that is accommodating to my physical limitations, but if not a job… what was I looking for?

So here I am, after several weeks of this unsettled search for something, and I am recognizing that neglect is in fact the source of my deep agitation and dissatisfaction.  I have slowly learned to make my health and medical care a priority and though that requires our financial resources and time, I have a greater feeling of peace about this than I have in the past.  Not guilt free yet, but maybe a little less guilt than I previously inflicted on myself for watching these resources be used.  This is progress, and I am going to continue to try to invest in these areas and do so with more confidence and peace.   I have however, failed to notice that as this one area has developed, I have slowly decreased the value and investment into other areas in my life.  It’s as if I made a trade in order to ease my conscience.   So the remaining parts of me and the balance in my life have become quite depleted and off kilter.  Even in the very simplest of areas.  No wonder I have felt so unsettled.

I have recently resorted to merely existing and taking up space, but not actually putting value into that existence or treating myself with the respect tending to other areas in my life.  I am aware that I don’t have unlimited resources to make up for lost time and take care of everything in one fail swoop.  But I do have some resources.  And in the same way that my two beautiful girls have their hair cut, their clean & presentable clothes, are current on their dentist appointments, & have plenty of “extras”, and just as my husband feels confident in his clean, dependable car and his personal appearance as he goes about his day, I have a need within me to be respected in this way as well.  And the lack of respect has not come from those around me.  The lack of respect has begun within me, and will only begin to change with small adjustments, little investments and acknowledgements, until it becomes a new habit and perspective.

So today is a new day.  It is Monday, A start of a new week, a start of a new awareness, and another step towards health of a new kind.

Thursday – Reblog For Ya… :)

http://www.butyoudontlooksick.com/articles/personal-essays/im-still-me-just-slightly-modified/