Category Archives: Feeling Crazy

10 Ways to Help an Overwhelmed, Exhausted Mom

I was inspired by this blog post at Nice Girl Notes.

I’ve got my own version.

TEN WAYS TO HELP AN OVERWHELMED, TOTALLY EXHAUSTED MOM, even though her situation is chronic.

Somehow, in the world of chronic illnesses, we moms (dads, kids) are supposed to be super human. In crisis, we get support. If we get better, people are happy. If we die, people bring casseroles, but chronic? That sucks. People don’t want to bring meals for years. They don’t want to do your dishes once a week FOR LIFE. But they still would (maybe) like to do SOMETHING. . but not something that makes them lose their soul in the muck of the chronically ill world.

Trust me. If you do something ONCE, it doesn’t mean you have to ever do it again. No one is keeping score, and if they are, they have too much time on their hands (and I highly doubt any mom has too much time on her hands).

Here are 10 things you can do.

1.) Send a card. Yes, an old fashioned, “Thinking of You” card. They help. Isolation is hard. Really hard.

2.) Take her kids to the park. Just call and say, “I’d like to come over and take your kid to the park.” It’s that easy. Really. Kids of chronically ill moms don’t have a blazing social calendar.

3.) Arrange a team visit. Plan a clothing exchange to help brighten her wardrobe. Plan a netflix night and sort socks while you watch something fun. Bring the gals (call ahead if she is an introvert) and remind her what it feels like to be well.

4.) Run a couple of errands. Is there anything you need at costco? My friend, who has THREE kids with congenital illnesses (not to mention the ones she and her husband have that started the ball rolling) texts me from costco. EVERY time she is there. “Need anything?” Do that. Do that when you are at Target. Or the co-op.

5.) Invite her places. Even if she says no EVERY TIME, she wants to be invited. Let her say no a million times. Some day, she might say yes. Take her out for tea, or for a pedicure. Even better? If she has a partner (well or not well) get folks to reach out to him/her as well. Much like kids with chronically ill moms, not a lot of big social events hit the calendar of people whose partners are chronically ill. So get your own partner to invite him/her for poker or band practice or tennis in the park. Isolation is the worst part of chronic illness.

6.) Ask her about her illness. If you tell her she looks great (remember, invisible illnesses don’t always make you look like crap), make sure you follow that with, “Do you feel as good as you look?” It’s an opening. My friend Ellen would always say to me, “You look great. I bet you feel like shit.” Opening. Just give her an opening. She won’t flood you with the drama. And even if she does, trust that she needs to flood. Because we look great, it doesn’t mean we feel okay. We’re good at faking it.

7.) Applaud her for her difficult life. Say it out loud. “I think you are so amazing for handling all this. You are SO strong.” Refrain from all the positive thinking talk. Avoid the. . “it will get better” talk, because, maybe it won’t. Let the present be okay.

8.) Share resources, if you can. Remember that having sick kids and being sick with little or no income is REALLY hard. If you can share your extra produce, or your farm share when you are on vacation or any bounty you might have, trust that pride and shame left the building a LONG time ago. Share. You’ll feel good. She’ll be honored.

9.) Bring Beauty.  Send over a bouquet of cut flowers from your garden. While you are there, refrain from telling her about the last infomercial you saw about how to cure her illness. She’s smart. She’s connected. She’s more connected than she wants to be. No network marketing solution needed.

10.) Offer something specific.  Instead of saying, “Let me know if there is anything I can do,” just offer something. I’ve been saying this for years, and love the reminder from Nice Girl Notes: Be Specific. Natalie Goldberg said it years ago in her books about writing. And I say it now. Be very clear and directed in your offers. I’d like to take your son to the Science Museum (or the pool or the library or ??) this thursday at noon. Would that work, or should we pick another day?”

Just because our situation is chronic doesn’t mean you are trapped in the helper role. I won’t suck you dry. I promise. I can’t say the same for other chronically ill people, but all you can do is try. Please do.

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How Would I Help A Friend?

For a brief period of time, after I did a radio show with my dear friend, Ellen, I started blogging about how to support chronically ill people.  Ellen and I both dreamed of a world where support came easier and more often.  I held Ellen’s hand through the final days of her life, and want so much for the dreams and wishes to come true.  That when an illness becomes chronic, community STAYS.  Doesn’t run, doesn’t ignore, doesn’t avoid.  That’s what I still want.

 

So, I’m going to post those blog posts here over the next week or two.

I hope they help one person gain the courage to reach out.

Originally posted February 5, 2011

I was told yesterday, by an amazing, yet chronically ill writer friend that I had amazing ideas.  It made me smile.  I just wish I had the well body to make them happen.

I’m hanging from a very thin thread today.  I worked my emergency plan by sending out an email to my Lotsa Helping Hands site.  Asking for people to give up part of their weekend to sit with me.  Be with me.  Keep me from eating my young and screaming at my partner.  And I have some people coming over.  I’m very grateful.

If I were the well friend, instead of the friend in need though, this is what I would do.  I would call that friend, or email and ask if we could set up a potluck/movie night/clothing exchange/salon/eveing of drinking games at her house, to help her get through this time.

Help her feel support.  Feel like she has a team behind her, not just a bunch of disparate friends that steal time from their active lives to babysit the crazy woman.  Not that that situation is bad, I just want more of the whole “Thirty Something,” or some sitcom I can’t remember well enough to reference.  The friend is in need, and the group of moms/friends/neighbors lend a hand.

I was at the house of a friend, today, whose husband struggles with Chronic Depression.  She told me that a friend had arranged a group cleaning session.  Grabbed a couple of moms and had a window cleaning party.  Good old fashion barn raising.

That’s what I would do.  I would arrange something that gets her social.  Helps her feel supported.  And maybe even gets some work done for her.

Sure, it might be exhausting, but most chronically ill people are pretty darn lonely and would welcome the change to have people over.  Just don’t leave a mess.  : ) 

Everything is Coming to a Grinding Halt


Remember that song?

I got a comment that made me pause. In fact, it brought me to a grinding halt. I was forced to remember what my values have always been.

The comment was really hard for me to read. The author of the comment was clearly someone that knows me, has helped me frequently and feels used because our relationship isn’t a two-way street.

I stopped blogging. I got swallowed by shame. I wanted to know who it was, and how I could make it up to them and I felt like a selfish pig. I thought I needed to stop asking for help completely. I was trying to convince myself that I don’t have needs.

But I didn’t quit blogging. I didn’t let myself fall into a deep despair because I don’t have the energy for that. If can’t even walk up a flight of stairs because my heart is not operating correctly, I can’t let myself be pulled down by someone’s belief that somehow I am not enough or that I don’t do the relationship correctly.

Good deeds can never be reciprocal. They are circular in nature. You are always paying it forward in life. I set up a soup train for a family dealing with depression. Kitty and Fun came over and spent the whole day cooking prepared meals.

I had lost my appetite and stopped eating. Their love and good food filled me up and made me want to eat again. I set up an auction for a friend who needed financial help. She can now afford to continue treatment. I give. You give. We just don’t always need to give in a “two way street” pattern.

I’m sad that a “friend” wouldn’t come to me and tell me I was neglecting her, and that she was offended by my “all me, all the time” energy of my blog.

Hmmm. . .what’s a blog for? It’s about me. My story. My experience. My needs. I am so grateful that I am strong enough to ask for help. When I ask people for help on any level, I believe that I am full of gratitude. When my friend Carrie comes over to help, I ask about her husband and daughter and her work and her dog. I don’t always call and check in with her (well, there is that issue that I HATE the phone), and I don’t always email her to ask her about her teaching.

I try SO hard when people visit to make it about her/him just as much as it is me. I try to make sure it is about community, not about me, me, me. I’m not in the world every day to see people. I’m caught up in my own life. And it is full.

And I have very limited energy. I am in a constant push/pull against what I want to accomplish on a daily business. I have shoulders that can’t get to 90 degrees. I can’t unload my dishwasher or dress myself. Sometimes I can’t take care of my sick children, and no amount of money in the world will give me healthy children or a husband that is well. This is my life. It isn’t bigger or better or hard than yours. The events and needs in my life don’t matter more than my neighbor’s life. My difficulties do not trump the young woman on the East Coast, a dancer since the age of 3, who just gained the ability to walk this week after two years of not being able to. I am not better off nor am I worse off. There is no hierarchy of pain, grief, despair, illness. There isn’t. Your brain tumor is not more valuable than the stage 4 Ovarian cancer. A job loss or longtime unemployment is not more or less difficult for you than anything anyone else is going through. Different. Just different. And hard. All hard.

No matter what our struggle, we need to maintain the courage to ask for help. It’s been a very difficult life experience for me to be so vulnerable. But I encourage everyone in need to try it on for size.

When you hurt, tell people. When you need, ask. You can’t worry about the outcome, even if your friends start feeling used and hurt. If you are feeling used and hurt you can step forward in courage and talk to your friend. Holler, “I NEED YOU.” Be honest.

Every time YOU ask, every time I ask, every time YOU help, every time I help, We send that strength and courage into the world.

What’s my alternative to asking? I can’t do this alone. None of us can through our troubles alone, and if we try to, we will just end up feeling hurt and lonely.

I have been grateful for every single person who has donated time, energy, love, or money to our family. Every dollar. Every moment. I may not express my gratitude as much as people would like. I may not return it in an equal value, but I’m doing the best I can. Just doing the best I can.

I’m back to blogging. No more music by The Cure as my daily theme song.
Because out of my “All me, all the time,” blog, I know I’ve touched the lives of people that live in overwhelm and Moms that live in fear for the lives of their kids. I know it. And I’ve saved at least one life.

What’s The Big Deal About Lyme Disease, Anyway?

This is a repost from last year sometime.  Thought it might be a good one for Lyme Disease Awareness Month.  Please share the link on your facebook wall.  Anyone can get lyme.  You don’t have to love the woods, you don’t have to own a dog, you don’t even need to leave the city to get it.  So learn about it.  And do your friends a favor by sharing information about it.

I’m thinking there are a whole lot of people who would like to ask a whole lot of questions of me, directly related to my illness. But I don’t know. Part of me thinks my house could be on fire and no one would notice. Everyone is busy. Life is full. Most people keep their drapes drawn and hope that the sick family is okay. Maybe they think we should be well. . and think we must be crazy since we aren’t well.

I start to wonder what people might ask if they didn’t feel like they were being petty or judgmental. So, I’m going to imagine this little question and answer, all the while, wishing people might just ask us for the answers. If people were asking these questions about our illness we might feel a little less isolated.

Question: Why aren’t you well yet? The IDSA (Infectious Disease Society of America) says you should be well with 4 weeks of treatment. It has been more than a year since your diagnosis. What gives?

Answer: Lyme Disease is a complex disease that rarely involves just one infectious disease. Ticks are cesspools of bacteria, parasites and viruses and when they yack into a human (or animal) body, you get it all. Even the IDSA agrees that you need 6 weeks of treatment for Babesiosis. I was never tested for Lyme, for Babesiosis or any other co-infection. So, in 1985, when I got the rash and got sick, I had 10 days of antibiotics. Because of the manipulative power of the bacteria/parasites, my illness went into my nervous system, did all kinds of hiding, and I had beautiful remissions when I was pregnant. So, these little critters have been fruitful and multiplying in every part of my body for 25 years. It is a wonder I am alive.

Question: Why do you say your kids have CONGENITAL Lyme Disease? How can a tick bite be congenital?

Answer: Well, I had the bite and was only partially treated in 1985. Chances are that the infamous bite of 1985 was NOT the first time I had been infected with these diseases. I grew up having imbedded ticks and we traveled often to the East Coast. Both of my parents had obvious symptoms of Bartonella, including difficulty making decisions and society anxiety. When did it enter my system for sure? Nobody knows. But all the infections crossed the placenta, and/or entered the babies during gestation or breast-feeding. When? I know for our little guy, Ezra, it likely crossed in the second trimester, when he died.

Question: Why aren’t your kids well now that they’ve been treated for over a year?

Answer: Well, Lyme and co-infections set the terrain of the body to allow all kinds of viral and parasitic opportunistic infections into the body. My kids were born with chronic lyme. There is no definitive cure. Yet. I hope my kids get well. All I can do is help them change the terrain of the body to better handle the infections and parasites within.

Question: I hope you guys are doing okay over there. I think about you often.

Answer: Okay, so this isn’t a question. If you are THINKING about someone with a serious chronic illness, if you are sending them love and light, if you are hoping for the best, you could be doing something practical for them. They are have issues with memory, often have issues with executive function like returning emails, phone calls, or responding to requests for help, and are most likely extremely isolated as they fight for their health and for the health of their children. They might be depressed. They might spend their evenings surfing craigslist for pets they want to rescue but could never take care of.

Show up on their doorstep, just like the Mormons do and start doing something. Don’t try to plan it, or ask them if you could help, just show up. Do the dishes. Throw in a load of laundry. Organize something like a meal making night, a laundry fest, a cleaning day, or just take the dog for a walk.

Isolation is a nightmare. Anything helps. A simple thing is NOT too little.

Question: So, when is your treatment going to end? Well. . probably never. Will we get better? We hope so. I’ve been sick for 25 years. My kids were born in the chronic phase of the illness. Their immune systems are compromised and they are pretty darn fragile. There is no protocol for Lyme Disease. Every doctor does it a different way, and most doctors do it differently for every patients. And every treatment plan is a crap shoot.

Question: So, here is what I don’t get. You complain about your “herxing”, you talk about how crappy you feel, you say that your kids live on the edge. Why the heck do none of you look sick?

So, my challenge to this question is this, “what does SICK look like”?

Does it look like somebody who only has the energy to bathe once a week?
Does it look like someone who hasn’t had the energy to get a haircut in close to 6 months?
Does it look like someone who can’t push her 4 year old in the swings at the park because she gets out of breath?
How ’bout someone whose kids look like little rag-a-muffins?

That’s what sick looks like. No chemo scarf. No bags under my eyes. To be told I look great though, is to deny how shitty I feel. I joke with my friend Ellen, “you look great, but I bet you feel like shit”. That’s the best thing to say. Acknowledge my illness. Having my struggle ignored makes me feel even more isolated. I feel isolated even when I’m not.

Question: So, what about Lyme rage? Didn’t that chimp have Lyme?

Answer: Yep, the chimp that ripped the woman’s face off was being treated for Lyme. I’m not going to kid you about Lyme and Bartonella. Some people don’t have mood issues with either. Some have anxiety. I have that. And I get confused and lost and sometimes my brain feels like I’m trapped in a Steven King novel. That is why I need so much help. I’m trying to parent children while I have a horror movie going on in my head. It isn’t always there. But when it is, it is really hard. Really scary.

*********************

Things My Mother Tried To Teach Me

Ten years ago on Mother’s Day, I leaned over to my mother and said, “Happy Mother’s Day, Mama.” She replied, “Shit. I don’t want to die on Mother’s Day.” As if that would matter. Mother’s Day hasn’t been easy since that day. I want to celebrate being a mother and I want to celebrate my children, but having my mother as my mother was such a gift. It’s hard to see this day as anything other than her day. So, in honor of my lovely mother, I am going to post 20 things my mother tried to teach me. Some I learned, some I resisted, some where outright lies.

But she tried. And I love her, still.

1.) Horizontal stripes make you look fat. Vertical stripes make you look slim and tall.

She had this vertically striped dress that was so hideous though. What I wouldn’t give to be able to remind her of that fashion error. So, I’ll say, “Stripes are hideous, Mama,” and leave it at that.

And part two: Always wear patterns. We are a messy lot. You can hide the stains that way.

2.) The Supernatural does exist.

Sometimes, even in a church basement. I love that my mother was a charismatic catholic. I think that is why I love supernatural fiction and urban fantasy. Thanks, mom.

3.) Never speak in public. It’s scary. Could even be life threatening.

My parents were horrified when I joined the speech team in high school. Later, when I coached the team and she was dying (and I was sneaking off from her bedside to still coach a little bit), she wanted to make me buttons to give to the team. SPEECH SAVES LIVES. She believed that speech saved mine.

4.) Never leave the house without lipstick.

Ever

And always carry tissues. Sorry mama, I still haven’t mastered that one. My kids still use their sleeves. Or mine.

5.) Never pass by a restroom without trying to use it. You never know when you will find another one.

Believe me, she followed this one to the letter. Ask anyone. You just never know.

6.) Never leave a pan handle sticking out from the stove. It’s dangerous.

Cooking with an illness induced brain injury isn’t safe either, Mama. Just sayin’.

7.) Never lick a knife.

Not even a table knife. I live on the edge. I let my children lick knives. Even when they are taking blood thinners. It takes particular skill to cut your tongue with a table knife.

8.) God exists. Even if it feels like God has abandoned you, God likely hasn’t.

Yeah, mom. Not buying it.

and part two: It isn’t where you find God, it’s that you find God.

Okay. I’ll buy this one. If I find God in music and in children and in every breath I take that doesn’t cause pain, score one for you.

9.) Never put important things on high shelves.

Thanks, mom. I haven’t mastered this yet, but I need to, since I have one fully frozen shoulder, and one on its way. This never mattered to me when I was well. I was 5′ 8″ to your 5’4″ then, but now, you are right.

10.) There’s safety in numbers.

She didn’t like the idea of settling down with just one love interest. At least not for her children that were in high school. I kept telling her, “Mom, if I have four boyfriends, I look like a slut.” But she was right. It kept me out of trouble.

11.) My husband and son were the most amazing gifts in my life.

Again. Right. They drive me crazy, but she was right.

12.) That my father would have been proud of me.

I don’t know, Mom. It’s easy to make shit up after people are dead.

13.) That I needed to be a writer. I was born to be a writer. And a hospice nurse.

Okay mom. How about a chronically ill writer? Is that a compromise, because it seems a little like a cruel joke. But I guess you knew. Somehow, I would end up tying together sickness/dying with writing.

14.) Be fair. Don’t play favorites.

You weren’t very good at this mom. And you know it.

15.) Perms give you a sense of security no matter how bad they are for your health and well being.

You were so wrong on this one, Mom. Wrong. Wrong. Wrong. The last few years of your life, you looked great. I know you went perm free because of me, and for your health, but you looked great!

16.) Coffee enemas are wrong. Just very, very wrong.

Again, mom. Coffee enemas are the bomb. I can’t believe you wouldn’t go for it. “I’d rather die than do coffee enemas.” Yep.

17.) Don’t play with matches. Because my sister did and lit her dress on fire.

Thank you, Barb, for lighting your dress on fire. I would have learned the hard way. I did put a fork in an outlet in 4th grade. Wish you would have warned me.

18.) God has a plan for your life.

Again, really? To be 46 years old, have a mitre valve problem, and who knows what else going wacky in my heart. In addition, I’ve been carrying around a variety of infectious disease for a really long time. Not buying it, mom. God’s plan seems a little mean if you ask me.

19.) Don’t ever have a difficult conversation with someone after dark. Just let it wait until the morning. Then everybody can sleep.

Yes, mom. Brilliant. I wish I remember that more often.

20.) Stick by the people you love, NO MATTER WHAT. Even when you die, never leave them.
Yep. Your were right mom. This is the one that impacted me the most. You will never forget me. You will not leave me orphaned. You will never forget your own.

Happy Mother’s Day, Mama. I wish you were here. We could fight about the perms, Jesus, coffee enemas, and knife licking. And I would savor every word.

Is There A Stimulus Package to Help My Deficit?

I’ve been continuously moved by this link since I saw it yesterday. It’s from ProHealth.com and it’s good. I seriously can’t stop thinking about it. It’s been like a smack in the head. All day long. I get it. Really. I just don’t know how to apply it.

Dr. Sarah Myhill asserts that healthy people have 1000 pounds of energy per day, and people with Chronic Fatigue Syndrome (or other Lyme Like illnesses) have 100 pounds to spend. Okay. I can live with that. My body makes me live with that EVERY single day. Day in and day out, I have 1/10 of the energy that most people have per day. Okay. Radical Acceptance. Got that.

But then, she goes on to say that people like me need to bank at least 20 pounds of that energy every day in order to actually heal.

Yikes.

I go back and forth between accepting that as true, and just being really angry about it. FIRST, I only get 1/10 of the energy most people get to do what the world expects of us as societal members. And then, I have to hold 1/5 of that pittance in reserve or I’m operating in a serious deficit. Okay. Fine. I’ll accept that.

Truth: I am so far in healing debt, and I have no idea how to get out.

What the hell does that look like to hold 20 pounds in reserve? I’ve never been particularly good at math, but every way I try to add it up, it doesn’t mesh.

I try to use that 1/10 that I get to do it all. Raise my family, make money, eat, go to medical appointments, fight for services that other disabled people get without much effort. There’s no time for rest, unless my body or my blood pressure makes me. There’s little interaction with the healthy world. And I rarely go ANYWHERE that isn’t required by my illness.

And even with those cut backs, I operate in a deficit every single day.

I keep thinking about Ruth Hayden, who is an amazing financial person who works with Women and Money and sometimes with Couples and Money. I’ve taken classes with her and she lays it out in simple terms. You have X amount of income and X amount of expense, and you have to make them match. You do that by EITHER making more income or by reducing expenses. Or both. It is simple math.

I’m trying to apply that concept to my available energy. I reduce expenses and gain more energy. Simple math. But somehow, with a tired body screaming at me. . . and so much that has to get done, I just don’t see the equation working out.

I’ll take any advice you have to offer me. What would YOU do if you went from having 1,000 pounds of energy to spend to having 80. How would you live your life differently?

Help me with my deficit reduction plan. I’m all ears.

Thanks For The Wheels, Mama!

In 2001 when my mom was dying of cancer of the pancreas, my brother decided to buy a wheelchair for her instead of rent one. “Someone will need it someday,” he insisted. I didn’t get the point, she she was dying from the moment they found the cancer. But we went on many walks around the neighborhood looking for robins and buds and enjoying the sunshine, together.

Even while I was getting the hang of operating it, she still had her sense of humor. I wheeled her forward over the lips and curbs, instead of backwards.

“Are you trying to kill me?”
“Nope, just trying to add a little excitement to your day.”

Seriously. . you can really lurch someone forward with those things. Today, I know that from experience. And children should not be allowed to operate them. Unless they really do want to kill you.

Although his appearance may fill you with fear, it was my husband who did the most damage.

“We are going to have to remodel, honey,” my husband said as he banged into every corner–from the couch I have become one with–to the bathroom that is smaller than a trash can.

I don’t want to remodel. Nor do I want to need a wheelchair. This treatment makes my joints lock, hurt and swell. I keep blacking out when I try to stand and even if I could, I don’t have the breath capacity to make it across the house. But it’s hella better than the firefighter’s carry. Yeah. That wasn’t working at all. I weigh more than he does, and frankly, he isn’t as strong as he thinks he is.

I never thought I’d really need a wheelchair. If I skip my meds tonight, I might not even need it tomorrow. Such is the nature of lyme disease. If I keep a sense of humor about it. . it’s okay. It gets me to and fro. Those missing pieces of plaster on the edges of the walls and doors? Someday, we’ll tell these stories and laugh.