Dear Friends And Family – LymeBites Edition

by Eric Rutulante  •  May 21st, 2010  •  15 Comments »  •  LymeBites Blog

I’ve been seeing more and more information lately online that is directed to the family and friends of the chronically ill, like those of us with Lyme disease. It really has me thinking….because earlier today I had my own message for family and friends, and the more I thought about it the more I realized they couldn’t handle hearing what I had to say, at least not in the way I meant it.

One of my new favorite blogs to read is Infectious Optimism. If you haven’t checked it out please click on the blog and read it. Today I read a post of what would you tell your family and friends? What I found interesting was so much of what was said were things that these people could not say to their families and friends directly. Candice even mentions that the things she has written have been for others, not for her own family and friends to read. It got me thinking and I realized how willing I am to share (or complain about?) my Lyme disease journey with total strangers, it’s those closest to us that it’s the hardest to share with.

So I sat down and I wrote a few things. While some of the things may not be what you want to read, it’s important to know it’s what is going on in my mind…and what goes on in the minds of so many of us. We can tell each other when we have these feelings, because we understand. But it is very difficult to share with our loved ones who don’t understand. That leads me to point #1.

1. You do not understand what I’m going through, unless you are going through it too. Please do not compare my Lyme disease to whatever ails you. While we each struggle with our own personal hell with whatever we deal with, I can guarantee you that you do not know what I’m going through. I appreciate you trying to understand, but you can’t, and you won’t, unless you get this sick. (And I think I’ve made it pretty clear this Lyme Disease Awareness Month that I’m not letting any of you get this sick!) You don’t want to understand what it’s like.

2. There are days I want to die.  I’ve yet to talk to a “Lymie” who hasn’t considered suicide as an option. But we can’t talk about that with anyone, because it sends everyone into a tizzy. (I want extra points for using the word tizzy while discussing suicide). It’s not that we are suicidal, it’s that we fear it may be the only relief we will ever get. I am now beginning my second year with the struggle of fighting this disease. I will gladly admit there have been countless times I wished I had gotten a different disease. One with a death sentence would have been fine, because it would have meant an end to the suffering. Those of us with Lyme don’t know if we will ever find an end to what we go through on a daily basis. We hope to God and fight like hell that we will find an end to it, but the reality is that there is no expiration date on our infections. Think about the worst flu you’ve ever had, and if you’d be willing to live with that EVERY DAY of your life, indefinitely. The worst flu I’ve ever had pales in comparison to what Lyme disease is like. So really think what it is like to wake up and face that reality as your life.

3. Lyme disease ruins us. No more explanation is needed. It literally ruins us. Our bodies, our minds, our lives. It takes our careers away, our livelihoods. We are left to depend on the kind souls that surround us to support and take care of us. And what do people say when they realize this? “At least you still have your life!” To those people, please see #2 above.

4. Hope is what keeps many of us going, but it’s not enough. Please understand no matter how hopeful I am for a full recovery, to get my life back and have the true Eric out and about again, it doesn’t change the fact of where I am today, in the right now. Yes, I need to have hope and believe I can get better and do all I can to fight…but please understand that right now, at this very moment…hope is a far off distant thing, I need to deal with the pain going through my body at this very moment. I need to grieve for what this disease has taken from me. What it has taken from my loved ones (yes, I’m talking about myself…whether they choose to believe it or not I am a gift to their lives!) I need to be okay with feeling the here and now, and I need you to be okay with it too. It’s part of the process…I understand if it is too much for you, so please walk away and come back later. But do not take the here and now away from me, because it is all I know. No amount of hoping is going to take away what I’m facing at this moment.

4. With Lyme disease, we make mistakes with things…like making a numbered list on a website (if I were to pull something off the top of my mind). Yes, you will notice my numerical order is messed up on this “list”. I left it on purpose. It’s been a misconception that Lyme disease only effects your joints, your knees…you know, typical aches and pains type of stuff. Anyone who has had it, can attest to the damage it can do to your brain. I’ve read many things, from the bacteria withholds oxygen to your brain to the bacteria messes up the circuitry…I don’t know how it does it, but the Lyme infection does mess with the mind. It does not however make us stupid. Yes, 50% of the time after I fill the cats water dish I try to put the dish in the fridge instead of on the floor. That does not change the fact that I am an intelligent person, who still has the same thoughts and ideas I did before Lyme. But some days it is harder to find those thoughts and ideas than others. But again, please know that Lyme disease has not made me an idiot (any more than I was pre-Lyme, which depending on who you ask will vary, please start by asking my high school assistant librarian…she’ll be the first to tell you I am NOT an idiot, she’s also the reason I got out of so much detention in high school, but my mind wanders…)

5. Our futures are uncertain. It takes most of us a while to accept that fact. But when we do, please do no tell us what the future will hold. Don’t let us dwell on the possibilities of course, but realize that our lives are on the line here, and we have to have contigency plans. Many of us don’t know from one day to the next if we’ll be able to walk, let alone talk or have an income. Please don’t assume it’s negativity when we are preparing for worst case scenario, even while fighting for the best case scenario. Again, it’s part of the process for us.

6. Let us cry. It’s important. Let us laugh. It’s important. Let us love. It’s important. Love us back. It’s important. Let us scream. It’s important.

To read more from Candice’s blog post on Infectious Optimism Click Here.  I strongly suggest you become a follower of hers (not the kind of followers who’d drink funny Kool Aid or anything, but at least what she writes). 

I could make a list a mile long of the things we wish we could tell our famly and friends when we become chronically ill, but I’ve chosen a few that I feel are important, from my own life as well as my conversations with other Lymies over the past year.  I hope after reading this you will at least know to ask someone you love who suffers from Lyme disease what they wish they could tell you…you’d be surprised what they may just tell you.

15 Responses to “Dear Friends And Family – LymeBites Edition”

  1. Wendy Schryver says:
    May 22, 2010 at 12:55 AM

    Thank you Eric from the bottom of my heart for putting what I think about everyday out there for people to see. I feel it but it is hard to get it out on paper. I will share this with my family and friends. I also look forward to checking out Candice’s blog.

  2. Lisa Markman says:
    May 22, 2010 at 2:19 AM

    Eric-Thank you soooo much for putting my thoughts to words-lately-I get about an hour-of making sense & its so hard-I’m going to share this with everyone I can-I always think of you-You are an inspiration to me-Thanks so much for everything you do & for making me laugh too-Soooo much love to you<3<3<3

  3. Tom Welch says:
    May 22, 2010 at 12:50 PM

    I couldn’t have done what you did because I couldn’t think of the words !! So I Thank you ,tom.

  4. Candice Mitchell says:
    May 22, 2010 at 12:52 PM

    Eric, I cannot thank you enough for writing this. You have done so much for the Lyme community yourself, and honestly I have looked up to both you and Ashley and have used you as examples and mentors in a sense as I ventured into the world of activism and awareness. My Infectiously Optimistic blog would not be what is is without your support, and the guidance that you’ve provided without even knowing it! Thank you for what you have written here, and for opening your heart to share with others yourself.

    What you’ve written here speaks in volumes about the experiences, trials and tribulations of a Late Stage Lyme patient, things that are so misunderstood by the community and by even those around us.

    I shall twitter this amazing post. Let me know if there is more that I can do to help in your effort to spread awareness and understanding.

    And thank you again, for the mention. It touched me :)

    Love always,
    Candice

  5. Eric Rutulante says:
    May 22, 2010 at 2:48 PM

    Wendy, thank you so much for your comment, and for sharing this with your family and friends. It’s not easy for them to hear, like I said we can talk about these things with each other because we understand, but lately I’m getting the feeling that more and more people are putting these thoughts out there, but haven’t been able to say it to their loved ones. Candice’s blog post was what made me decide to read it…what she wrote is inspirational and touching. Thank you Wendy for all your support!!!

  6. Eric Rutulante says:
    May 22, 2010 at 2:49 PM

    Tom…thank you for reading. I understand, at times we can’t come up with the words to share what we feel. That’s why I felt this was important, and I’m thankful I had a clear enough mind to be able to write it. We are a team in the Lyme community…when one of us can’t speak, someone else will do it for us…because we have to work together to pull ourselves out of this. Keep the faith Tom…

  7. Eric Rutulante says:
    May 22, 2010 at 2:50 PM

    Lisa…you are amazing, thanks for reading and being a part of our community, as well as such a supportive and wonderful friend. I enjoy making you laugh every day…because laughter IS the best medicine. So many suffer so horribly day after day…I’m glad that in that suffering I can bring a smile to people’s faces. You are an amazing person Lisa…thank you, and keep up the good work!

  8. Eric Rutulante says:
    May 22, 2010 at 2:53 PM

    Candice, your comment brought tears to my eyes. I am so grateful for the opportunity we have had to be a part of something so big, and so happy that you are joining us in getting the word out there. Your site really is amazing, and I can’t wait to see the amazing things you are going to do (and continue to do). I know Ashley and I are both thrilled by your writing, and your part in Lyme awareness. You have such a fresh perspective on such a hideous disease. I am very proud of you too for speaking out…it’s not easy fighting for your life with a disease, and then fighting every other system to get care, understanding etc. You’re doing an amazing job, and again…I am so excited for the future and all that we can do together still for awareness and activism. Keep up the great work!!!

    Lots of love to you too!
    Eric

  9. Tam says:
    May 22, 2010 at 6:05 PM

    I’ve been fighting lyme with co-infections for approximately 12 years now. I probably went undiagnosed for several years prior to that. I’m glad that you were brave enough to share with all of us what goes on in your mind because it probabaly does go through all our minds. I try not to let this disease get the best of me, but it’s so hard not to. It’s taken so much from me physically, emotionally, financially and even in terms of relationships. I’m so glad that we now have the ability and technology to share our experiences with each other-good, bad or indifferent-and so grateful that we are able to express ourselves without judgment only understanding! Thanks for sharing!

  10. Connie Babcock says:
    May 22, 2010 at 8:41 PM

    Thank you all for everything you do and write about to make others aware of how bad LD can be. My husband has had LD for app. on year and is feeling much better now that he is on meds.
    On the other hand, I was diag. in July, 2009. I am almost 61 and I must have had this since I was in my early to mid twenties. I was always getting cronic this and cronic that: everything from sinititus to broncitis and beyond. I had seizures in my thirties but no tests showed a reason why. I had a stroke in my sleep when I was in my forties and a small blood clot went to my right eye. Again no reason or answer was found. In 2009 I was diagnosed with fibromyalga. It was then that my family doctor took a test for LD and it came back positive.
    I have times when I talk backwards. Times when I do not remember what I am suppose to say or do. I hurt all over and like the rest of you, I could go on and on.
    My friends and family do not understand and cannot believe I am in such pain because I do as much as I can. They only hear about me pulling weeks, going to my grandchilds ball game, etc.
    They do not hear about the days I cannot get out of bed, can barely walk because my feet hurt so bad, can’t do my housework because my hands and arms hurt, and etc.
    May God Bless All Of Us Lymies and Let Our Voices Be Heard. Amen

  11. Marie B. says:
    May 23, 2010 at 3:21 PM

    Thanks Eric for putting your thoughts out there… It’s truly helpful for us to see inside for a moment of what you deal with… We could not even comprehend… I hope you know I wish all the best for you in your fight to beat this…. and what you are doing for awareness is incredible… Peace..

  12. Karen Neely says:
    May 24, 2010 at 5:36 PM

    Eric, Eric, Eric….I can not thank you enough for all you have done for Lyme Disease Awareness. I’ve had LD, Babs, & Bart for 20 years now and I think, well I KNOW, that you are far more knowledgeable then I am in such a short period of time. I tried, when I was first diagnosed, to go on the internet and bring about awareness. At that time, there was very little about LD, and especially the co-infections. I, however, did work on a lyme newsletter called “Lyme Matters,” hoping to get the word out to anyone who would listen. But you know what? I have never once been able to sit down with any of my close friends or my family and explain exactly how I feel every single day for the past 20 years. I was on a list to get the film UOS even before it was released thinking perhaps I would give to family and thinking maybe that would open up dialogue for some kind of understanding. It never happened. My family knows that I am sick…but they have no idea what I go through on a daily basis. I just didn’t know what else to do. I was away from the computer for years, only to come back on and see the great strides that you and others have made in trying to make others aware. What you wrote Eric…is something that I could never be able to put into words verbally, let alone write them down. I love how you deal with the disease through laughter, but this blog brought tears to my eyes. I would love to have your permission to add this to my Notes on FB (giving credit, of course). Thank you Eric…you are one special guy!

  13. Eric Rutulante says:
    May 24, 2010 at 6:52 PM

    Thank you Karen! Of course, feel free to put this in a note! The more who see it the better!

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    [...] Dear Friends And Family – LymeBites Edition [...]

  15. Ashley Whimpey says:
    June 27, 2010 at 11:00 AM

    Eric. You don’t know me. . .but then again, you KNOW ME!! You put into words everything that I think and more. I suffered with Lyme for 7 years before we found the diagnosis. Since treatment, it has been 3 years. I am still SO ILL. I spend most days on the couch in such immense pain I can barely stand it. I am young and have a little son, and I constantly feel that I am a horrible mother. How will I live the rest of my long life in this much pain? Will my son understand why I spend so much time sleeping and crying? These are feelings that I am finally finding so many to have in the Lyme community. For a while I didn’t want anyone to understand, because that would mean that they were in as much pain as me. . .and I couldn’t handle that. Why would God allow all in this world to feel so much pain? But now I know that is not all of us in this world that feel this awful, in which I am grateful. Without those healthy people, we chronic Lymies would not survive. My husband is the crutch I lean on. He has been so supportive, and I love him for it. But sometimes I want him to be in my body for one day. . .just one. . .to see if I’m being a wuss, or if I am validated for my pain. Just so he can understand how much I actually accomplish while feeling so flippin crappy. You’re right. NO ONE can understand what we each are going through. Not even fellow Lymies. But you all come pretty darn close!

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