Let’s Just Be Frenemies?

So.. This happened..

7.63 mile hike at Potato Creek State Park
7.63 mile hike at Potato Creek State Park

I bragged talked about my 7.63 mile hike at Potato Creek State Park on Instagram.  It got a few likes.  I was really proud of myself for accomplishing this because a couple of weeks ago, I never would have made it to the trial head.  Here I am, walking almost 8 miles in under four hours.

At some point in the night, I was asleep when it appeared, I received a comment from an Instagram account that I am pretty sure is a troll account.   Set to private.  Has no posts, has a cartoon profile photo, both follower and follow are set to zero. This screams of either new account or troll account. I am thinking the later.

However.

I can only assume that whomever wrote the comment is someone that felt compelled to get something off their chest but they also like me and didn’t want me to be offended and get unfollowed or blocked.  I don’t usually roll that way unless you threaten me or I find out you’re stealing my stuff.

I was so taken back by what it said that I failed to make a screen shot of the comment and since it’s later in the day, I couldn’t even tell you who the author was. I deleted it. It was hurtful and untrue.

What did it say?

Well.  This is not verbatim but it basically accused me of not being that sick, in denial and cruel to those who couldn’t do the things that I have been doing I don’t look sick and I shouldn’t tag my photo’s as being part of the Lyme community.

For real?

I am a person with a lot of opinions. One of those opinions is that a new patient with Lyme Disease does not need  to do an internet search and find nothing positive about what their lives will look like moving forward.

In my personal experience, the very first article that I pulled up mentioned, first thing, is the quality of life being worse than a patient with congestive heart failure ( which I don’t believe ) and that Lyme patients lose everything and commit suicide.

My second thought “you don’t look sick”. Really. That’s the very same complaint that chronic Lyme patients or anyone with an “invisible illness” makes because people say to them “you don’t look sick”.

I don’t look sick? Neither do most of the other people I’ve seen with Lyme.

So, apparently, I have never had a bad moment since before my diagnoses and up until now.  Apparently, since I have failed to constantly complain about my condition and post photo after photo to Instagram and on my blog of me looking miserable and pathetic, I must not have it as bad as someone else.

When did this become a competition? Also, this is a weird thing to sit around and compare to someone else. I’m not jealous of anyone receiving meds through an IV etc.  Are you jealous that I can ride my bike? Leave the house or are you proud of yourself for being sicker than everyone else?

I was under the impression that we were all in this together and that we were all supposed to support each other.  My blog is to discuss my own personal journey and what I am up to and how things are going.

I refuse to allow the experiences of other people to determine my own outcome, especially my own limitations.  I certainly won’t take judgements to heart because I made the decision to get out of bed. 

Get some exercise haters, you might feel better in a week or two. You might start to feel better. The best thing I could have done for myself was to get out of bed and start forcing myself to exercise.

I literally just read the article on the Lyme Buddies Facebook about patients with Lyme Disease who are doing better after starting physical therapy.  Just in case if you want to go and read that.  It seems like some people can’t get past anything they read on social media. *gasp* You mean to tell me that exercise might have something to do with feeling better?

I’m not angry about this anymore. Maybe a little bit irritated.  It seems to me that living life is a lot more fun than laying in bed and letting it pass by. I started to feel a little off when I was about a mile into this hike but I pushed through and did it anyway. I took my time.  I even pulled a tick off my arm.  I survived and I was really proud of myself.

I don’t plan on having this thing forever. I know that I will keep a few souvenirs aka the residual affects of this disease for a long time.  I am going to do whatever I can to survive and conquer this disease.

Let’s be real here friends and enemies. My frenemies. Being criticized for conquering an illness by people who share the same illness, is the saddest and most pathetic fucking thing I have ever heard.

Really, and to you my dear Troll. Get over yourself. We are in this together. You don’t have to like what I have to say, you don’t even have to like me. I think you should do yourself a favor and reread what I wrote here, and take that to heart.

I hope everyone is having a pleasant day.

 

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6 thoughts on “Let’s Just Be Frenemies?

  1. Good for you for standing tall on this one.

    I cannot for the life of me understand why people feel that being ill is a competition. Or that someone with less symptoms is not part of the “club”… ugh.

    You know I talk to a lot of people about Lyme because I use a fairly uncommon treatment. I will give people hours of my time trying to help. Then I see them on support groups online saying they feel awful and they have “tried everything” and they don’t feel better. Um, they are lying.

    Sorry to piggyback my vent onto your vent, but I completely understand your frustrations.

    To finish on a positive note, I am so proud of you for continuing to push forward and use every moment that you are feeling well to your fullest advantage. You rock!

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  2. Don’t apologize for venting because you actually said something that I was thinking. “They tried everything” and they don’t feel better etc. I agree with you. It’s a crazy accusation to make to someone that they are being dishonest about their condition. It makes me leery to even think that someone might embellish their symptoms or state of their illness for attention.. I think it happens. I think it happens a lot.

    It is almost laughable at how many people seem to be stuck up over being ill compared to someone else. Like it’s a high society privilege to be chained to an IV or their bed. The more people I meet and blogs I read, I am left to wonder if a few of them have Munchhausen. On two occasions I have asked people if it was okay so ask them questions. I asked specific questions about their diagnoses and treatments and was met with silence.

    Did they pick Lyme Disease because you know you won’t be expected to die from it the way that you would cancer? You don’t have to explain a whole lot? I do’t know. It isn’t any fun to be sick in real life.

    The best thing I could have done for myself was to force myself out of bed and get moving again. If I hadn’t, I would probably still be completely wiped out and still in bed. I think there’s a thing as getting too much rest. You nap too long or sleep too late you generally feel like crap. I think for some people, not everyone, that’s part of the problem. On top of all of the “natural remedies” they are taking that are probably making them sick..

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  3. There is a lot of anger in the Lyme community. I can totally understand it, the patients have been left in the dust because individuals, companies and our government care more about profits and power over helping people. People are left feeling the effects of “dis-ease”. On top of that they are often targeted by medical “professionals” and companies selling products and services claiming that they can “cure” them, when in reality they are making a bundle off of these desperate patients. Yet we all keep trying to find what will help us feel better so we keep trying another thing or another approach. That anger can come out in the wrong way and at the wrong people. That anger is also self destructive and will cause its own “dis-ease”.

    I guess we don’t know what motivated the troll to respond to your post the way they did. The hardest part though is to not let their anger affect you.

    I am finding the Lyme world to be a little strange to navigate. I have been available to people to give of any knowledge and experience I have to help them along. They have sought me out. Yet when I have followed up with them later, I have been met with an odd response. It appears they don’t want to further speak to me about it and are going their own road, or not taking any road at all and are just stuck in their illness. That is fine, I was just checking to see how they were doing. But now I realize I have to just share my experience, strength and hope in regards to Lyme and then just leave it alone and move on. Whatever they do with that info is up to them.

    Everyone has different symptoms, different degrees of illness and everyone reacts to different treatments differently. Also we all have good days and bad days. In August, on vacation (I always feel better on vacation) I was able to do a really hard hike that I could never have done a year ago! I was very proud of myself for conquering that mountain. But it didn’t mean I am cured and will never have a bad day again. I think people have such a hard time with that. They just don’t understand what it is like to be chronically ill, to have good days and bad, to also make the best of bad days and do things even though you are not feeling well. My philosophy is always “well I can feel crappy at home, or crappy out. I might as well go out and do something.”

    People often think in black and white terms; you are either sick or well. People really don’t understand conditions that fluctuate. Conditions that change based on your environment, your stress level, the quality of your sleep the night before, what you ate, how early you have to get up for work, if you have supportive people in your life, etc. People can’t deal with the 3D Technicolor world that is Lyme Disease.

    At lease we can show support to each other on this ride. Glad you enjoyed a beautiful hike. The lake looked so nice. Your dog is so cute, it’s great having them as companions, isn’t it?

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    1. On that note.. I have had a lot of thoughts about the troll and how I feel about patients and doctors. You are one of the most rational people I have talked to since I have had my diagnoses. So, I hope that you are not offended by what I have written below.

      A lot of the articles that I have read lately are about “quack doctors” and “predatory doctors” and those that are both. I truly believe that the so called “lyme literate” doctor that was suggested by LLADS was a quack and a predatory doctor. The red flags went up when he wanted a large amount of cash up front and *I* could deal with my insurance company. He also had crazy open availability in addition to a practice that was in his residence. This doctor called me personally and gave me his cell phone number. My red flags were waving and the sirens were going off.

      When I followed up with reviews that I read online from patients, they came off as Munchhausen suspects ( to be blunt ) and raved on the care they were receiving from him. When I spoke to him, the rational side of my brain realized that what he was suggesting would have been over medicating me on antibiotics. This in return, would make me really sick and eventually make them appear to not work for me, thus open the door for other “treatments”.
      These things would have likely been pointless and kept me sick and made me sicker.

      I feel the same way about people who advertise lights, crystals and natural remedies. I suppose if you believe hard enough in light therapy and the power of a purple crystal, you can make your brain follow suit .Natural remedies ( like St. John’s Wort ) don’t mesh well with a lot of medications and will make you sick. OR by themselves, will make you sick.

      Even labratories are suspect. Everyone mentions how they were finally diagnosed by this special lab in California called iGeneX, and even they have been in trouble and accused of being in cahoots with “quack doctors” .

      Even some of the same names of doctors are popping up in articles about how they are being sued for diagnosing people without a real diagnoses. Those people then find out they never had Lyme to begin with and now they’re truly sick OR DEAD from the treatments.

      All that time, I was under the care of the doctor of internal medicine and waiting to see my infectious disease doctor. I, like to many, thought it was wise to seek out someone lyme literate. I think when you do that, you seriously set yourself up. Especially when you’re panicked and scared. These doctors are not only taking advantage of people, they’re hurting them.

      Why? Because someone who is panicked and frightened, has things to lose and afraid of death, will spend the money to achieve wellness. Thus, making these people wealthy. My “lyme literate” doctor wanted $500 just to get started. For what?

      Now, I am not a doctor and what I am saying is strictly my own opinion. However, the same names and companies keep coming up when I am doing my own research so that I may have my own educated opinions and knowledge.

      If it doesn’t come from science, I don’t want to have anything to do with it.

      Also, I want to go back to my statement about the patients that are Munchhausen suspects, in my opinion, are wearing illness like a badge, loving the attention, have no problem putting photo’s of themselves all over social media, bragging about being “spoonie this and spoonie that” and going as far as making videos of themselves in various moments of their day to show the world, just how sick they are and finally, those who are comparing Lyme Disease to Breast Cancer.

      Are we even for real right now?

      Was that person pissed off because I was doing something they couldn’t do? Or blowing their cover and showing the world that it could be done? Am I proving that there is no need to panic and that if they follow science and LISTEN to their doctor and do as they’re told and use their head, that they will be just fine in time.

      Some people love attention and they’ll smear their make up for the pitty party. I am not that person. Since the troll incident, I find it harder and harder to not roll my eyes and stop the phrase “get a grip” from coming out of my mouth.

      Now, before you think I am horrible or harsh, hear me out. I know we are sick and I know that there are people who went undiagnosed and are suffering the effects of the disease. We will all suffer the effects of the disease for a period of time. If you want to label it “chronic” then okay. Even cancer patients deal with the effects of cancer and treatment for a long time after they are done with chemo and go into remission. Do we call that “chronic cancer”.

      I have $5 in my pocket to bet that if some of these people stopped their natural regimens and ditch the doctors that are feeding them all of these therapies and got back into the land of the living, they would eventually return to wellness.

      I could go on and on.. I’m not going to. I certainly don’t want to hinder anyone else’s life plan or suggest that certain people aren’t sick. Maybe I am totally off base. I don’t think I am. I just shudder to think where I would be right now had I visited that particular doctor and allowed him to treat me.

      If anything, I want people to make educated and rational decisions for themselves. It is true that there are people who there who don’t have your best interests at heart and there are those that do. The hard part is knowing which from which.

      All the best.

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      1. I don’t know your whole story and what you went through or are going through with Lyme, but it does sound like you are lucky and were not affected as badly as many others. I know that is the case for me, no matter how bad I got and am I have seen so many others a lot worse. Unfortunately nowadays we can not just rely on “science”, science has been corrupted by money and greed. There is tons of evidence of this if people are willing to open up their eyes. This is the case with Lyme Disease especially and chronic Lyme as well. The ones who are denying chronic lyme exists have ties to pharmaceutical companies, insurance companies or own the patent to the DNA of the lyme bacteria and stand to make money from it. They are not a very unbiased bunch.

        My experience with Lyme has made me a more compassionate person when it comes to understanding people’s pain and suffering with chronic illnesses. That is one of the unexpected blessings from having gone through this. The other blessing is that I have woken up to what is really going on with our medical system, the corruption of the AMA, FDA, CDC and the IDSA.

        Sorry you didn’t get much relief from “natural solutions” I have found that is the only thing working for me.
        My LLMD was a life saver. He is extremely knowledgeable and keeps learning about what works and new treatments to try. The first visit with him was expensive, but follow up visits are not. These docs are putting themselves on the line to treat Lyme. And they are hard to come by.

        I see we have a lot of differences with our points of view based on reading your reply. But I do agree with your last two sentences. That is the hard part.

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