Evolution of Living with a Chronic Illness

Evolution of a chronic illness:

1. Must be some sort of virus…
2. Hmmmm still sick, something must be wrong… If I’m still sick in a week I’ll see a doctor…
3. Okay I’ll call my doctor… (makes appointment, cancels because of an obligation)
4. Okay, I’m really going to go this time — goes to appointment, doctor prescribe something to mask the symptoms. Medicine make you worse.
5. Start the entire cycle again, this time doctor orders some tests, which you put off, because you have stuff to do.
6. You finally get the tests but they’re inconclusive. You know something is wrong, so you see a specialist, they tell you it’s “all in your head” & maybe prescribe more pills
7. Tell yourself you’re just run down, start trying to take better care of yourself… But there’s no improvement, so you start the cycle over AGAIN.
8. Repeat steps 1-7 about 20 more times…
9. Can’t get out of bed, feeling hopeless, keep going to the doctor.
11. FINALLY get a diagnosis AND MORE PILLS
12. Still sick. Repeat steps 1-11.
13. Start to lose hope. Contemplate suicide. Decide to keep fighting. Repeat steps 1-13.
14. Get a better diagnosis this time, a plan of attack in place, but it doesn’t work…
15. Repeat steps 1-14 (no really, this is what happens!)
16. Join support group — feel less alone because others are going through the same thing. LIsten to all the people who have gone “natural” & think they’re crazy.
17. Realize that they hippy nutbags into the natural stuff might be onto something… Become hippy nutbag.
18. Leave support groups focused on Western Medicine & ONLY join groups with other hippy nutbags…
19. Argue with other hippy nutbags about how diet doesn’t help — until you finally listen one day.
20. Realize diet helps. Continue to be organic food eating hippy nut bag & encourage others to do same…
21. Realize “support groups” focused on disease only stress you more because you’re sick of explaining to people who are not organic eating hippy nut bags that you’ve found the answer… So you leave the groups.
22. Start meditating. Focusing on healing. You smell like a bag of mud & eat only twigs & berries, but you’re no longer suicidal.
23. Pace yourself & take care of yourself…
24. Over do it, eat junk, forget to take care of yourself. Back to step 17… Repeat a couple of dozen times
25. FINALLY find balance. Be grateful for each “good” moment. Laugh at the person you used to be. Try to help those who are “ready”, you don’t have the time or energy who those who are not, but you pray for them… Spend the rest of your life trying to maintain this sweet spot — knowing, you might not ever live a “normal” life, & that’s okay…

(So I’m somewhere around #23… Having the flu isn’t so bad when you’ve been through 4 years of hell… Here’s hoping I recover soon & get back to step 25!!! I hope everyone is having a good day!!!)

The Caregiver Fantasy…

Before I got sick, I was always the person who took care of everyone around me… I functioned on zero sleep, worked 90 hours a week, & was a single mom to four active kids. I hosted parties, playdates, & sleepovers. I’d get up, go to the gym, then spend thirty minutes getting myself dolled up, put in a full day at work, & sit at the sidelines of a softball game in stilettos. I was the picture of a supermom, I could handle anything that life threw at me & I did. Then I got sick…

I was “lucky” in the sense that I met the love of my life just before I got sick. This meant that I had someone to fall apart on, but it has also put a tremendous strain on him. He jokes that I got sick so that he could keep up with me — doing his best each & every day. We also talk about how we wish the situation were reversed, as I’m more capable of running on empty, juggling all the “stuff” than he is. I try to be all Zen about it & whatnot, saying things like “being sick makes me reflect on my life, that I needed to slow down & smell the roses.” The reality is: when I say this I’m just trying to make myself feel better about being sick, about what I cannot do, & about the total lack of control I have over anything in my life.

The are so many articles out there about caregivers: from tips for them, to articles about how grateful we are, support for caregivers, etc… There truly is a special place in heaven for those who care for a sick spouse. Not only do they do the work no one else is able to do, but they do what no one else would be willing to do. It comes with a great personal sacrifice, not only of themselves, but they also lose the partner that they knew. It’s no wonder that so many marriages break under the weight of illness. Which is why, in a perfect world, your spouse would not be your caregiver.

Which leads me to my point: The Caregiver Fantasy.

If you’re sick like me & completely dependent on help from others to function on the most basic level, you’ve probably fantasized about what the “perfect caregiver” would look like. Most women my age are fantasizing about Bradley Cooper types, but I just want someone who I can feel comfortable with, who will take care of me, who is NOT my husband. I’m a big believer in the idea that your thoughts manifest things, so spend a lot of time visualizing the life I want. I spend hours fantasizing about what that would look like, how I would get it, how I would find them. I’ve come to the conclusion that the only way it would even be feasible is if I win the lottery. So lets say I have a hundred grand a year to throw at the problem, how do you find someone you’re comfortable with that you can count on? Like I said, it’s my Caregiver Fantasy.

If I’m being really honest…

I do not have an ever loving clue what I’m doing here. I want to write. I want to inspire people. I want to make people laugh.

As I slowly publish things I’ve written or add things that come to mind, it comes together, but it’s not pretty.

Thanks to everyone who is baring with me, following along, & encouraging me. You have no idea how much your support means. ❤

Oh no you didn’t! Things I can’t believe people say to sick people…

I have a big mouth. Like a really big mouth. I’m notorious for saying things without realizing that there are some things you should not say — for putting my foot in my mouth. In fact, it’s something that my friends tease me about constantly… Want a dose of irony? I’ve been listening for people say the most absurd, inconsiderate nonsense you’ve ever heard. The worst part? When it comes to those who were once the closest to you…

Total strangers, acquaintances, & “medical professionals”:
Have said that I’m faking my illness. They have said that I’m just looking for attention. They have acted as if they’ve had a flipping clue as to what I’m going through. They’ve pretended to have “cures” to my illness that they don’t have a clue about. They’ve assumed I’m pregnant. They’ve used my vulnerable moments where I’ve opened myself up in hopes of helping others, to attack me personally. In fact, one woman went so far to say “I hope you never get better.” The ironic thing is that I just end up feeling bad for them. This kind of total lack of compassion indicates, to me at least, that they’re pretty unhappy & that they’re self absorbed jerks. Look, I just want people to be happy, & there’s nothing wrong with being self absorbed… HOWEVER, if you’re so miserable that you have time to bash total strangers, something is wrong. I feel bad for you. I do my best to educate & be patient with these people. When they start to annoy me, I stop myself & say “I wish them peace, love, & happiness.” It’s corny, but it makes me feel better — it’s something I highly recommend. But again, they’re total strangers, who gives a flying f@ck what they think?

My family:
This one hurts a lot & involves very few words, in fact, not a single word. It doesn’t really surprise me, my extended family, who has only been involved in my life as it’s been convenient, hasn’t said a flipping word to me. Not one card, not one call, not one visit. They know I’m sick, they just don’t care. Total strangers care more about me than they do. Yet, when I die, I’m sure they’ll all be “wahhhhhhhh she died so young” I’m hopeful that my husband & friends will tell them exactly where to go. It would be nice if things were different, but we’re talking about some serious family drama & issues that go way beyond my illness or even me. I just have this naive idea that “family” means that people put their crap aside when this kind of thing happens… I wish them all well & pray things were different, but I’m not exactly optimistic anymore.

My once closest friends:
I’ve heard it all… From “all you talk about is Lyme” to “have you tried” to “I had that once” to “you just need to…” to “feel better soon.” I’ve developed a pretty thick skin about this stuff & usually just smile & nod, educating them as I have it in me. Their comments are based in ignorance & sting, but what hurts the most is them just flipping dropping off the planet. It’s like I’m dead. I have a few friends who still check on me from time to time, but most of them are too busy with their own lives to worry about me. The “old me” was the person who always made the plans, the friend who did the driving, the person who called, etc. “New me” just sort of sits here, alone, behind her computer, waiting for the moment when I can serve some small purpose in their world. I want them to be happy & enjoying life — I’m happy for them. I just wish things were different.

My dad:
A newly born again Christian, screamed at me for 2 hours that I was “still sick because you haven’t found Jesus.” I could be wrong, but that doesn’t sound terribly Christian, not to mention that it’s inaccurate. I pray he’ll see the error of his ways, but it’s unlikely… I suppose a tirade about the lack of support I’ve received from my Dad will eventually make it’s way to the internet, perhaps on Father’s Day — keep your eyes peeled. In any case, he is who he is — I love him despite this nonsense, & I keep holding onto hope that things will change, that I’ll get the love & support I deserve, even at 40 years old.

My kids:
I love them unconditionally but have broken my heart a thousand times, they don’t visit, don’t ask how I feel. It seems like my illness has no impact on them. One of my girls has more than once said to me with a smile “at least it’s not Cancer.” I wonder if I did have Cancer, would she care about me then? I’m hoping that as they grow up & can see things clearly for themselves that they’ll come back to me, & express some level of compassion so that we can move forward. I was not a perfect parent, but I did my best, & I did it alone & I was sick the entire time. I raised you better than this… Regardless, I love them & just want them to be happy, if that means they don’t talk to me, so be it.

And on the flip side…

My dear friends who have stood by my side, my youngest daughter, & my husband:
You have been my biggest cheerleaders & my constant support. I could not do this without you. I am grateful for you at every minute of every day. You do not always say the right things, but your unwavering support speaks far louder than your words. I am so sorry that I’m not there for you the way I used to be. I am so sorry for the burden I have become in your lives. I am bound & determined to get better — when I do, I’ll make it my life’s mission to repay your kindness & love.

And to the people reading this…

To the caregivers, family, & friends of the sick:
Thank you for taking the time to read this. It’s a small thing you’re doing for those you love. It shows that you’re compassionate & caring. The world needs more people like you. You are all angels.

The person who has a chronic illness:
You’re no doubt nodding your head & thinking of a thousand similar experiences. I’m so sorry you’re going through this. You don’t deserve to suffer. You deserve compassion & love. You deserve to be healthy. You deserve so much more than you’re getting. If you’re anything like me, the feelings of loneliness & being a burden have led you down a pretty dark path, more than once. Please hold on. Reach out to a friend, a therapist, a suicide hotline… Reach out to me. If you cannot hold on for yourself or your family, please do it for the millions who are suffering like you, who look to your example for strength. We are in this together.

I have good days & bad. I have days where I come inches from throwing things at people who say idiotic things to me & days where I just laugh it all off. I have days where I can’t take it anymore & I’m googling different ways to kill myself. I am fighting for my life & I’m not giving up. I am fighting for those who suffer along with me, we’re in this together.

The 10 things I’d do if I woke up healthy:

1. Leave the house.
2. Do nice things for all those who stood by my side.
3. Eat things that have been off limits for the last 4 years.
4. Get back to work!!
5. Clean my house.
6. Travel.
7. Donate all of my medical stuff to those in need.
8. Hold the hand of those who are sick & alone.
9. Cancel Netflix & all of my other digital creature comforts — I wouldn’t have time for them anymore.
10. Do whatever I could to help those suffering.

I could go on & on. I’ve literally fantasized about this every minute of every day. Like all of my sick friends, I just want a normal again.

What would you do?