Struggling For Hope

by Eric Rutulante • February 24th, 2011 • 7 Comments » • Eric's Blog

I’m in the middle of doing a variety of things today.

1. Recovering from the worst stomach bug (if that’s what it was) I’ve ever had.

2. Preparing for my appt with my Lyme Dr tomorrow. (more on that to follow)

3. Changing sheets, pillowcases etc. now that the worst of the bug is over.

4. Recovering from taking a showering. Showering with a PICC line is hard enough, when you have one arm to use, the other in the air, and you are weak and shaky from being sick, it makes taking a shower seem like climbing Mt. Everest.

I told myself earlier that I would do the one thing I had to do today, get bloodwork done, and then return home to rest. I may not be well enough to make it to the Dr’s appt tomorrow at the rate I’m going. But I have some thoughts on going to this appt.

I haven’t written much, in fact I’ve purposely been avoiding anything that has to do with Lyme right now. A year ago I was so gung ho and full of hope…but a year later and I’m actually sicker than I was.

After 20 months, over $50,000 in out of pocket expenses and one living hell after another, I’m quite ready to throw in the proverbial towel. That is my decision. I tried to get my PICC line pulled a few weeks ago, but was told I couldn’t until I saw the Dr.

My hope of getting “better” diminishes daily. People say “but look at me, I’m better after only 3 years!” and you want to say “Yay!”…but then those same people crash, some weekly, some monthly…but they’re not “better”. They’ve improved, but they’re not better. Not every case is the same, but my case is pretty bad (though not nearly as bad as others, which I am grateful for every day). I can’t see spending all this money, to spend years of torture and non stop infliction of pain on myself only to “improve”. I want my life back, and it’s becoming more and more apparent that will never happen.

So I have to start a new life, and learn how to accept that, which is what I’m now working on. But I don’t want any more treatment, I don’t want any more pills, I don’t want any more PICC lines…I just want to be left alone, in my bed, drugged up and watching TV or playing on FB. Unfortunately that’s not an option, for many reasons.

So I made the decision to turn over all medical rights and decisions with the Lyme Dr to my mother. I know I have a bad attitude, and I don’t care anymore. I don’t see any hope in my future, I see a rather dull and boring life…I’m neither dull nor boring, and living with Lyme for the rest of my life is a real drag on my soul. But it’s out of my control, just like all of this is.

I’ve purposely not written much to avoid being negative, but again in the name of honesty I’m sharing where I’m at with my journey. I no longer think of it as a journey, but as a struggle.

We’re approaching 2 years since I was diagnosed with Lyme disease. It has been a horrible journey. I remember when I first got sick and started finding others in the Lyme community someone saying “you don’t start to get better until you hit rock bottom”. I took a lot of comfort in that for a long time. But it seems each time I think I’ve hit rock bottom…I find another step off to an even deeper bottom.

I’m searching for hope, because I see my friends and family in the Lyme community also struggling to hang on to their hope. There’s got to be a way to find it again.

For now, I just try to survive day to day. I have about 20 pages of notes to put together into a presentation for the Dr tomorrow, and so that my mom is fully up to speed on everything. From there we move on, whatever decision the Dr and my mother come up with I will go along with, because I feel I have no other choice. That’s the worst part about this disease, it feels like I no longer have any choices…just a path of hell to continue on.

7 Responses to “Struggling For Hope”

Jacqi says:

February 24, 2011 at 4:47 PM

I know it doesn’t help to say you
are not alone, but you aren’t. I know it doesn’t help to know that others have derived strength from your words, but they have, at least I know I have. When you said the part about thinking you were at the bottom, only to realize there was another step down, yeah I hear that. Here lately I wonder why I am still here. I am of no use to my family, of no use to myself. Bit the Gods or whatever must have a great plan for me, for you, for all of us, and I guess that is what keeps my feet shuffling one after the other…
Laurie says:

February 24, 2011 at 8:25 PM

Sometimes you can only get your life back in bits and pieces. It isn’t enough…but it is what it is. I feel your struggle, your frustration, your helplessness. I got sick at 28 and I’m now 55. I had no chance at a normal life as a young adult, a potential wife and mother. I finally got to a point in 1999 where I actually made a plan on how to commit suicide. And long story short, two years later I was hiking in the Sierra Nevada mountains. Keep the faith.
janulee shirvis says:

February 24, 2011 at 8:41 PM

This is too heartbreaking and beyond words of comment because they obviously do not bring you hope; so I ask you (as I do also) to put hope and trust in the Lord. He only can give you renewed hope and do not give up the Faith that He will and can help, even if only emotionally and mentally at this present time. Do not take on what may be tomorrow; tomorrow is not for any of us to know anyways. Only my words and prayers and parts of my heart can I send you.
KC says:

February 24, 2011 at 9:39 PM

I know what you mean…. Rough patch here myself.
Mary says:

February 25, 2011 at 11:12 AM

Platitutudes are not likely to help when one is in this state. I feel the same sense of hopelessness after three years of treatment and 20 or more years of illness. But I do wish to thank you for sharing this because it helps to know that others go through these same crises.

I hope that you find some sense of purpose or joy in your daily life, no matter how limited or filled with suffering it may be.

My thoughts are with you.
Alyssa says:

February 25, 2011 at 4:14 PM

I am one of those “better” people….and I will say this. Even with bumps in the road I will take this over where I was one or even two years ago any single day of the week. Yes…I may still get sick sometimes but I also have lots of amazing days. My quality of life is far superior to what it was….I fought for this. I fought with everything I had for three straight years and I still fight. I will never give up! For two and half years I thought I would never get better but I refused to accept it….keep fighting. Your day will come. No matter how small, find some goodness somewhere in your life each and every day.

Mom always says “Lyme Disease is not for the faint of heart and don’t take it laying down”!!!

I love you and want you to keep finding your fight!!! xoxo
Michele says:

February 26, 2011 at 3:26 AM

I know exactly how you feel. You put every thing I feel (have felt the past 13 years) into words when I couldn’t. You aren’t alone, but your words are reaching people and giving them hope and encouragement (even if you’re not getting either of those at this time). Please don’t give up. Take a break and as you’ve stated, let your mom take the reins for awhile. Luckily your mom is there for you right now as many of us fight this alone or lose our family members along the way. I’m 44 and was diagnosed in january of 2000, although I was sick for 2 years before my diagnosis. I was hopeful in the beginning also. After losing my husband and his family, my business, my friends, my house, my animals, my dad passed away in november of 2003. I then found out that I had passed it to my daughter while I was pregnant. Somehow I kept going for 2 more years but at the end of 2005 I had had it with being poked and prodded for 5 years straight. I couldn’t take anymore of the herbal or prescription medications that I had downed during that time. Even if I could, I no longer had any money left having spent it all on treatments and doctors.
I want you to know I have not even spoken the words lyme disease in the past 5 years. Then the other day, I logged onto Candice Accola’s twitter page and I see “Lyme Bites”. The name caught my eye. I can’t tell you how many times I’ve said that out loud or in my head the past 11 years. Anyway, having read what you’ve been writing has given me the courage and the strength to renew my fight against this awful disease. I would like to help spread the word, but I do not have the gift that you do. You can make people understand what this disease is, what it does to us and those around us, in a way that most of us can’t. Thank you for that. We need you for that, so don’t give up.
Even if you feel weak right now, your words are full of power and are giving me and many others strength and encouragement.
Sending love your way and positive energy to help you get through the day tomorrow.