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.

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.

We Are Ok.

We Are OK by Joshua Radin

The link above is to a song by Joshua Radin that I find encouraging every once in a while. Just a little reminder to those of you who are fighting through this day. We Are Ok. If you have to listen to this song on repeat, go for it. There will be a new day. It will be better. You are strong. You add value. Don’t lose hope. Rest, breathe, and remember the sunny days. They are not over, they are coming again. What will it take today to find encouragement? A cup of coffee? A phone call to a friend? Looking through old photos? Give yourself permission to find peace, and hold onto the little bit of hope that you can find. We Are Ok.

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.

Yup, it sucks.

I get that I need to stay positive.  I do get that.  I get that our mind and our attitudes are so powerful, and that we can go so much further than our perceived limitations when we use these tools to our advantage.  I know this.  That being said, I can tell you that today I made a wish.  I wished with all of the passion that I could muster within myself that I wouldn’t have to be creative about how to accomplish the things that I needed to accomplish today.  I wished that I could just get up and do them.  Every day I bait myself with various promises to keep motivated throughout the day, and honestly sometimes I get tired of being determined and putting “mind over matter”, and I just want it to be easy.  We all have obstacles, and I know that many people have more challenges to deal with than I do, but every once in a while, I just wish that I could wake up and have a day off from being sick.  OK or maybe a week off.  I think that just a brief taste of feeling energetic and casting off this fog in my head and putting a stop to this stupid, nagging, aching would be so refreshing.  I wonder what I would do.  I wonder what that would be like.  I’m pretty sure I would feel like superwoman, ready to take on the world!

I definitely lectured myself on why I needed to stop feeling sorry for myself and stop being so negative and really fought with myself to drop this “life is so unfair to me” mentality.   But you know what?  Life is truly hard sometimes, and we do need to make sure that we don’t dwell in the valleys, but is it possible that there is something to acknowledging that they exist?  I think it might even be healthy to give yourself permission to just call it like it is, and say those charmingly impolite and crude, yet perfectly accurate words, THIS SUCKS.  Yup, it does, it totally sucks, and now I move on to focusing my energies on gratitude and finding a place to renew my strength and get back to living my life.

I hope that life is absolutely wonderful to you today my friends, but in the case that it is not, I am very happy to stand with you and point at whatever evil thing is getting you down and very maturely call it names and make sure that it knows that we both agree that it sucks.  With one last stomp of our foot as we move on, maybe we will at least get the slightest bit of satisfaction from our outburst. 🙂

 

Reblog: Seeing the Good: Day 5

Just a handful of positivity from a great blog. Be sure to follow the link to view the entire post.  I know that all of us, as people, can relate to similar times like these. I especially connected with the bit about remembering being well. We may have weaknesses, but we are strong, and can encourage ourselves and each other.

Lyme Takes Time

Sometimes our thoughts get the best of us. They become these heavy, heavy weights, always weighing us down like an anchor that makes us feel as if we’ll never see the shore again.

Remarks from loved ones in the past come out of hiding, only adding to the weight along with painful memories. What could have been, should have been. Remembering when you were well, when you didn’t spend all your time borrowing in your room, away from the word. All these thoughts leave us feeling helpless and buried alive.

When there is no hand to reach for, look to your own. When there is no one there to tell you it will be alright, whisper it to yourself. When you find yourself in tears, “Cry as hard as you want to. But just make sure that when you stop crying, you never cry for the same reason again.”

We carry a lot. And we need to remember to…

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