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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8 thoughts on “A Few Minutes of Being Me

  1. The people who know you love you and think that you should be listed as one of the bravest people out there. Putting your heart and circumstances for the world to see is tough, but you are an encouragement all of us!

  2. I know the feeling of battling for a true diagnosis, and trying to “cure” what can’t be cured. I’m glad to see you being open about your illness – no one should have to hide that they’re sick.

  3. I admire your fighting spirit. After 9 years of living with this illness (fibromyalgia/chronic myofascial pain) it still amazes me that I’m getting no help with it. I have muscle pain around real, physical muscle knots and they just want to drug me! It makes no sense. I’m glad there are people like you out there that are demanding answers. I need to be more like that with my doctors.

    • @Trisha, I’m sorry that you are dealing with all of that. It is so so hard. Don’t ever give up ok? Let’s just not ever give up on finding answers. It feels like such a slow battle sometimes, I often wonder if I am fighting a losing fight. Wherever this battle takes me, I want to at least know that I gave it my all (however limited that may be). Also, I think I may sound a lot “feistier” than I actually behave. 🙂 I am determined, but moving at a turtle’s pace!

  4. “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.”
    Sooo many times I used to hear that. And when the meds come in liquid form.. Ick! Or a nasty bitter powder that you are only allowed to mix with water. The joys.
    Now my sister is my primary doctor and she knows I wont take anything that’s not in tablet form 😉

    • So sorry to hear that you can relate to this experience, but glad you can communicate these things to your sister now. Definitely felt like an appropriate paraphrase of the consistent suggestions I was receiving for a while. Definitely don’t have all of the answers (or many of them?), but have also definitely ruled out many proposed “answers” that were wrong for me! Hope you are well today. Xoxo

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