Tag Archives: invisible illness

What If Your Pain Were Visible?

What if your invisible illness could be made visible?

What if you could wear something that brought attention to the pain you’re feeling, the pain no one can see?

What would that item look like? Would it look something like this?

Invisible---Girls2

This design is the brainchild of professional kettlebell athlete and fitness coach Megan Densmore, in conjunction with Labs* by One Squat Shop. The shirt is a custom print launched to support the production of Invisible, “a film challenging the way society treats and views chronic invisible illness.”

“Over my years of living with Fibromyalgia, I connected with others dealing with similar challenges and became interested in how these health issues showed up in our personal relationships and social lives.” -Megan

Though Megan is lucky enough to currently be living without symptoms, she says this has only reinforced her motivation for this project. She’s been able to experience the world both with and without symptoms, and seen the impact Fibro has had on hers, and others, lives and relationships.

Invisible is a documentary featuring woman who are under 40, who look healthy but are managing serious health problems with daily symptoms. These woman will be sharing about how, since their symptoms can’t be seen with the naked eye, they struggle to maintain relationships, to be social, and continue working in the face of doubt and judgement from others.

The t-shirt/tank design was inspired by the invisibility of conditions like Fibromyalgia, RA, and Lupus. The design is an answer to the question: “What if we could show everyone how we feel? What if they could see inside?” If you’re a movie buff, you might also notice the design is inspired by Nigel Tufnel’s green skeleton shirt in This is Spinal Tap.

So how can you get one of these awesome shirts?

Both the t-shirt and tank are pre-order and must have 15 orders to print. They are $25 USD plus $4.99 S/H. All the proceeds from the sales will go directly to the production of Invisible. We have to hurry, though, as the sale ends tomorrow, October 31, 2014 at midnight.

Below I’ve included a preview of the film. They are still looking for women to share their stories, so if you’d like to be involved please contact them at invisiblefilmteam@gmail.com and tell them I sent you.

I do hope you’ll join me in supporting the production of this film. It’s time we made our voices heard, and time we brought awareness and visibility to the pain we struggle with each day. I’ll be wearing my new tank soon, will you?

 

**Full Disclosure: I was approached by Labs* to check out this project, and lend it my voice if I was so inclined. I was not compensated in any way for writing this post. Clicking on the above affiliate links will enter me into a contest to win a free t-shirt or tank, as well as one to giveaway here. I fully believe this project is a worthy cause, and something that could benefit my readers. I would not share it here otherwise.

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Ask Away Friday Vol. 13

It’s Friday again and time for a dose of Ask Away Friday!

This week I got to swap with the lovely Jenessa from Mothering {in Real Life}

(I don’t have a spiffy graphic this week cuz I started feeling puny while finishing this post up, and needed to just let it go. Sorry Jenessa, you deserve better.)

Jenessa is a married mom of three who blogs about life, her battles with depression, and her family. She has an honest voice that cuts through the fluff and tells it like it is. She’s not putting any fake flowers on it, this is mothering- in real life. Be sure to pop on over and tell her hi and check out her answers to my questions.

Here’s what Jenessa asked me-

1. I’m glad you have started therapy to learn some coping tools for your depression. What do you find works best for you? What else have you learned from therapy?

Journalling has been a new coping tool that I find helpful. I used to think my journals had to make sense, like my blog or writing. Learning that my journals could be messy, that they were more for freeing my mind, was HUGE. Now I scribble, write, doodle, and make thought bubbles in my journal. Whatever it takes to get the swirling thoughts out of my head and onto paper.

2. I love your recent post “Just one… but so much more“. What else would you add to your list of “I am…”?

Thank you! I wrote that post as part of Invisible Illness Awareness Week, and was really happy with the response I received. I don’t know if there is anything I would add, I think it came out well the first time.

3. What advice would you give to someone living with chronic pain, depression or other “invisible” illnesses?

Be gentle with yourself.

We all have these images of who we should be, and certain expectations of ourselves. When your life gets derailed by illness, it’s hard to reconcile our images of ourselves with what is actually possible. So we berate ourselves for not living up to this picture of perfection, when in reality, we’re doing the best we can within our new perimeters. So be gentle with yourself, be kind. Recognize that you’re doing your best, even if it’s not up to the same standards you used to have.

4. Tell an embarrassing childhood story – it could be about you, your son, or your fiancé.

Oh goodness. I won’t embarrass Scotty by sharing the stories his dad has told me. When Jojo was about three, we had just moved back to my hometown and were living with my parents while we got on our feet. We were all sitting in the living room talking one night, me, my (then) husband, and my parents. Jojo was in the middle of the floor playing with blocks when suddenly the tower he was building came crashing down. Without missing a beat, he uttered “Damnit!” with the same tone of voice as I do. And of course, everyone turned to look at me.

Jojo and I had a nice talk that night about how we don’t repeat the things Mama says.

5. You were a young mother, same as I was. How has starting motherhood young changed your life? (Or motherhood in general?)

I had to grow up. I know that sounds cliche, but it’s the truth. Suddenly there was this tiny little human who relied on me for EVERYTHING. So I worked dead-end minimum wage jobs and went to the parenting classes offered by WIC and learned via trial and error. I won’t say I did everything right, but I have loved that little man since the moment I knew he existed, and I wouldn’t change a single thing.

6. Share your favorite pumpkin or apple recipe for fall.

Here’s a little secret. I don’t like pumpkin. *gasp* Scotty does though, so I make him pumpkin cookies every fall. Maybe this year I’ll try pumpkin bread instead…

7. I love that your blog is so open and honest. Is there anything you don’t feel comfortable with sharing on your blog?

I try to keep respect for Scotty’s privacy. I don’t share about our personal lives here, no bedroom talk. I also don’t go into too much detail about his life, his work. I choose to blog, he doesn’t, so it’s not fair for me to decide what he shares.

8. I personally loved planning our wedding. What do you love about wedding planning? What do you hate? Does your fiancée help with the planning?

I love all the ideas! And Pinterest is both my best friend and my worst enemy. I can easily get overwhelmed there. Scotty is a GREAT help. I run all my ideas past him and make sure he gets a say. It’s his day too, after all 🙂

9. Tell us 5 random facts about yourself that you haven’t shared here on your blog before.

* I saw the Newsboys live before they were cool…well, this time around anyway.

* I was once stuck on the side of a mountain road with Nubs overnight. It’s a great story that I’ll have to share one of these days…

* I used to smoke. I quit five years ago for the last time.

* I love panda bears. Big puffy heart love them.

* I used to have my tongue pierced.

10. Fast Ten
Favorite Color: Teal.Turquoise.Aqua. That lovely place between green and blue.
Lucky Number: 3
Time You Usually Wake Up: 7:30ish, but I don’t usually start getting up until 8:30ish
Time You Usually Go To Bed: Anytime between 10:00pm and midnight.
Favorite Season: Fall
Favorite Sport: Football!
Favorite Flower: Daisies
Favorite Song: Linkin Park’s “A Place For My Head”
Favorite Movie: It’s a tie between Top Gun and Dirty Dancing
Best Memory With Your Kid: The first time he said “Love you Mama”

Many thanks to Jenessa for the great swap. Like I said above, I started feeling yucky, so Ima lay low this weekend and hope this flare blows by. Y’all have a good one!

Just One…But So Much More

I am just one.

Just one of the millions fighting an invisible illness. Just one in a sea of pain and misunderstanding. Just one to stand up and say: I am more.

I am more than my illnesses. I am more than pain, medications, fatigue, and disability.

BlogPic

I am a sister. I have sisters with whom I’m building better relationships. We’re working to make memories now, rather than live in our pasts. I’m a sister of the heart. I’ve adopted so many of my dear friends, claiming them as my family, and loving them more than words.

I am a mother. I love my son more than I ever thought possible. Each day he makes me more proud, and I am in awe of his intelligence and strength of character. I look at him and can’t believe that he’s mine. He is my greatest gift, and I am his mother.

I am a daughter. Though my relationships with my parents have been strained over the years, I am still theirs. I am the result of a drunken night, a relationship that never should have been. Still, I am his sole heir, and her oldest. I am their daughter, their blood, carrying on their legacies.

I am a lover, soulmate, life partner, fiance, spouse. I am the promise of a future, and the memory of five wonderful years together. I am dinner on the table, lunches packed for work, laundry washed and put away. I am date nights and late nights walking our doggy. I am the one he gave his heart to, and the keeper of his secrets.

I am a friend. I am care packages in the mail, funny cards, and emails that make us laugh until we cry. I am two hour chats where we talk about everything and nothing. I am a shoulder for your tears, and arms for a hug. I am coffee on a Sunday afternoon, and watching 80s movies while we talk about life.

I am a writer. I share my words, my thoughts, my stories. I come here to this corner of the internet that I’ve made mine every week to share this life I lead. I share to ease the thoughts and voices swirling around in my head. I share so you know you’re not alone. I share because I am a writer, and writers write.

I am a lover of music, books, and movies. I am a true crime fan, a sap for a good romance, and a flower dancing to the waves of sound. I am an admirer of those who follow their passions and are gracious enough to share them with the world.

I am just one. And I matter.

 

You are just one, but you can make a difference. This week (Sept. 8-13 2014) is Invisible Illness Awareness Week. Please take a moment to check out their site and lend your support. Together we can raise awareness for all of us. And awareness can lead to research, to a cure.

Ask Away Friday The Spoonie Edition

This short week was long in more ways than one. I had my first Remicade infusion, which went well, but still took a lot out of me. Even though Scotty works on Saturday this week, I’m so very ready for the weekend. And FOOTBALL!!

This week also found me without a partner for Ask Away Friday until yesterday when Christy from Uplifting Families came to my rescue. Christy has lived with chronic pain for a number of years, but has also recently been diagnosed with Fibro. Since we’d swapped before, we thought this time maybe we should do a #spoonie themed swap, then we could pick up some tips from each other, and share some with you!

AAFChristyCollage

 

A spoonie asks and a spoonie answers…

1. We both live with chronic pain. What is one thing (non-medication) that can always take your mind off the pain? 

I’ve said it before, and I’ll say it again: Screaming along with some of my favorite rock songs can always distract me from what’s ailing me.

2. What is the best advice someone has ever given you that has really helped you cope?

My gal Dawnie has given me some great advice over the last few years. At a particularly low point for me, she imparted this gem:

Celebrate each thing you do, each decision you make. Because it all counts. Don’t push so hard to be positive, instead be realistic. And when you’re able to do that, be really real with yourself, you’ll realize how much you really do each day.

I try to remember this every day. To be kind to myself when I fall behind on the chores, and still celebrate when all I can manage is to get out of bed and feed myself. Because it all matters.

3. When you’re having a good day, what is your favorite thing to do?

I love thrift shopping. My fiance and I will sometimes take $10 each and putter around local second hand stores to see what treasures we can find. Sometimes we find nothing. Other times we find fabric for one of my projects, or a piece of sports memorabilia for Scotty’s collection. Even if we don’t find anything, it’s nice to just walk around exploring.

4. What are 5 must have items you would recommend to fellow spoonies?

*Hot/Cold compresses. Preferably ones that can be used either way, and used many times. Homemade rice or bean bags are great.

*A stereo, mp3 player, or some sort of music playing device. And headphones so you can listen when everyone else is asleep and pain has you counting sheep.

*Comfort food. I always try to keep a few of my favorite treats around for the rough days. Because sometimes you just really need a bite of chocolate.

*Fuzzy socks or slippers WITH NON SKID SOLES. My feet are almost always cold, unless it’s 90+ degrees outside. And even then, sometimes. Loose fitting fuzzy socks warm my feet without being too constricting. But please, please, PLEASE make sure they’re “no-slip.” No need to have a nasty fall just because you wanted toasty toes.

*Something to cuddle. Whether it’s a kiddo, a spouse, a pet, a stuffed animal, or all of the above, always have something (or someone) to hug. You’d be surprised how much it helps.

5. What new activity or hobby have you picked up since you became a spoonie?

Honestly? Napping LOL. Before I got sick, I rarely slept during the day, I just could never shut my brain off. Now I love naps. If things work out right, I take one every afternoon. Sometimes I also sneak one in before lunch. And on really rough days, I take another right before dinner.

6. I have always been told that you are own best advocate for your health. Have you ever had to push your doctor to figure out what is wrong or to test a procedure or medication?

I’m blessed that my current team of doctors is pretty stellar. They all listen to me and my concerns, and we make decisions together. This hasn’t always been the case, and I’ve had to look for a second opinion or change doctors. Because we ARE our own best advocates, and we should NEVER be uncomfortable with our health decisions.

7. My dogs are a huge blessing, do you feel having pets helps you cope with your chronic illness?

Without a doubt, I know my life is better with my doggy. With recent flares and medication changes, Todd has proven that he was meant to be my companion. He curls up with me and licks my hand when he knows I’m hurting. If I stay in bed, he spends the day laying next to me. When I’m stressed or anxious, he does this cute floppy thing on the floor until I rub his belly. Which, of course, makes me smile and calms my mind.

8. Do you ever feel isolated since you stopped working?

Oh boy. Some days I swear if I have to stare at these four walls any longer, I’ll scream. My social life has gone WAY down, so yeah, there are moments where I feel really isolated. I’m blessed to have such a great online community of friends and family who remind me that I’m not alone, though, and that helps.

9. Do you feel your pain restricts you from doing things you enjoy?

Absolutely. Most days I try not to think about the things I can’t do anymore, because it kinda makes me a little crazy. I try to focus on the things I can still do, like my writing. But I’d be lying if I said I didn’t miss cross-stitching.

10. Do you feel that support groups are a great place to connect with other spoonies and find others who share a similar journey?

I do! Support groups and online communities can be great! There are many out there, so find the one(s) that’s right for you. They can be good resources for sharing tips and information on treatments, as well as a place to find a sympathetic ear for those really yucky days.

 

Thanks Christy for another great swap!

Do you have any tips for spoonies you’d add to this? Or maybe you have a question you’d like me to answer? Leave a comment and let me know! And if you’d like to join in on the Ask Away Friday fun, check out their Facebook group to get started. It’s a great bunch of bloggers who are more than happy to show you the ropes 🙂

Now…ARE YOU READY FOR SOME FOOTBALL?!?!?!?!

 

What Would Rheumatoid Awareness Mean?

February 2, 2014 is not just Groundhog’s Day or Superbowl Sunday.

gh-rad1

Awareness.

As with any condition or disease, awareness can translate into more research money, better medical care, better treatments, and possibly a cure. All of these things are not just a pipe dream, but a very real need. Without them, patients will continue to be misdiagnosed, mistreated, and we will suffer more than we already do.

Awareness means something more to me, though.

See, despite the knowledge that I cannot change others, there’s still a little part of me that hopes. I want to change the doubters, the nay-sayers, the critics.

I want to show all the people who question me how real it all is. I want to show my parents, my sisters, people who used to be friends that I AM NOT ALONE. It’s not all in my head, it’s not a result of my being overweight, IT IS NOT JUST ARTHRITIS.

No matter how many times I try, I always come up short in trying to get people to see just how serious RA is. When they see me walking with a cane, when I have to stop and rest, when I have to back out of plans- I get the dreaded eye-roll. With that one derisive look, my heart crumbles.

I don’t want their sympathy, I want their understanding. I want them to realize that I’m not trying to be difficult and I’m certainly not begging for attention. I’m different from who I used to be, and as hard as it is for me to come to grips with this, I know it’s even harder for others. They can’t see the ravaging that is going on inside my body, so to them it’s just an attitude problem.

Awareness could change that.

I could mean that when I have to break down and use the motorized carts at the grocery store, I don’t get dirty looks from both the staff and the other customers. It could mean that when I’m walking slowly with my cane, my fiance and I won’t get bombarded with rude comments. It could mean that when I need to cancel plans, I won’t hear that sigh on the other end of the line.

It could mean that the world around us would be just a little bit kinder, a little more understanding.

** This post is part of the #Rheum Blog Carnival. For more information on the Carnival or Rheumatoid Awareness Day, please visit RAWarrior

Be Gentle With Yourself

In a recent conversation with my future father in law, we were sharing our frustrations with the fatigue that often accompanies chronic illness.

He was beating himself up for needing more naps lately and for a few moments where he had dozed off at his computer. As he spoke, I was reminded of the first months after my diagnosis when I would often get angry with myself for not being at the level of energy and accomplishment that I was used to. It was hard to reconcile this new “me” with the standards I had come to expect from myself.

Human beings are, for the most part, creatures of habit. We love our routines and when something comes along to throw a monkey wrench in things, we feel rattled. When that monkey wrench becomes permanent instead of temporary, we flounder while trying to find our new “normal.”

I can honestly tell you, it wasn’t until nearly a year after my diagnosis that I felt I was mostly comfortable with my new lifestyle. And truly, there are days where it still eats at me that I will never be the person I used to be. There will probably always be times I long for my former lifestyle. And that’s okay.

The bane of it all is that while chronic illness nearly demands a life of routine and schedule, it is also extremely unpredictable. So while we may plan things out for ourselves in order to save rushing and unnecessary pain and frustration later, something as simple as waking up in the wrong position can throw all those carefully laid plans out the window.

It’s those days that we need to be extra gentle with ourselves. We need to remind ourselves that it takes energy for the body to heal itself and those of us battling chronic conditions are in a near constant state of healing. Our bodies are always trying to get back to that “normal” and it’s taking all of our reserves. It’s not giving in or giving up, it’s being realistic. It’s realizing that we will have good days, medium days, and bad days. It’s about finding how to live our best life possible on all kinds of days.

There are tons of pamphlets, books, and helpful sites out there full of tips reminding us to rest and take it easy. What we forget is when we’re resting, we need to not be angry or frustrated with ourselves for needing that rest. The mental energy wasted beating ourselves up about that nap we took just further takes from our bank of spoons.

I know it’s not easy. And yes, there are days where I still get frustrated with myself. But as I continue on my path moving forward, it is getting easier and easier to forgive myself for not being who I always thought I would be. For not being that former self. And it’s even easier to start to like the person I am becoming.

Have you been kind to yourself today or are you beating yourself up for your body’s needs? Maybe you should give yourself a break and have something sweet to make you smile.

Me? I’m going to have some frozen yogurt while I prop my feet up. Because I need it and that’s okay.

Month of Positivity- Day 15

MOPBlog

 

November 15, 2013

My self-care has been and continues to be resting and being kind to myself while I battle this flare. Apparently I pinched something in my left leg at some point Wednesday night because I was fighting nerve pain in my lower left leg all day yesterday. I panicked when it started to progress up my leg last night and called my doc. I’m on anti-inflammatory medication now and the pain has eased a bit. The flare is hanging on, but I’m hanging in. My fiance brought home Chinese take-out for dinner last night, so I’m also counting that as self-care. It was divine and nothing upset my tummy, which is a HUGE win these days!

I’m thankful for the online spoonie community.

Whether it’s my Spoons 4 Spoonies page, my gals from The Band, or any of the other online spoonie groups I’ve joined via Facebook and the Tweeter machine, I know someone will always understand me.

Something I’ve experienced myself as well as heard from any spoonie I’ve met is that we feel alone and misunderstood. When we look “normal” and well on the outside, it’s hard to find those in our lives who can see the pain and struggles we deal with on a daily basis. When our friends are off having fun and we’re home fighting a flare, we feel alone and left out.

The online spoonie community takes some of that away. We share inspirational quotes and funny photos to cheer each other up. When we have a new symptom, there’s someone to talk to while we wait to see the doctor again. They are the friends we may never meet, but they KNOW us. They understand all that we’re feeling, even when we don’t have the words to describe it. They are pioneers on the paths to better care for us all.

To show a bit of gratitude, I’m sharing their links here so that you may all go and check them out. You can tell them I sent you, or not, it’s your call. But please take the time to send some love to the people who’ve held me up while I’ve been battling with recent flares.

Pajama Daze

Kicking RA in the Face

Spoon Shortage

Living Chronically Fabulous

Chronic Illness Cat

But You Don’t Look Sick

Finding Strength Through Pain

Rheumatoid Arthritis Guy

RA Chicks

Rheumatoid Arthritis Warrior

And of course, I can’t forget my friends in the Chronically Chatty group 🙂

These folks help me to keep swimming and give me hope on days when it’s lacking. Who or what has helped you through a rough time? Do you have a spoonie group that I should join? Please leave a link in the comments so I can check them out!

 

 

Staying Positive With Chronic Illness

A common question I’ve received from my new readers is: How do I stay so positive?

Truthfully, each day is a new day. Some days are harder than others.

Just like the different diseases that ravage our bodies and/or minds, there are ebbs and flows. When I was first diagnosed in early 2012, I fell into a dark depression for a number of months. It was hard to see how I would ever learn to live with a disease that was going to eventually take everything from me.

How did I find my way out of that dark spot?

I found fellow spoonies online. I found people who were like me who showed me how to smile in the face of my disease. I found friends.

The truth of the matter is we can’t do this alone. Because some days are HARD and I need to know I can call on someone who will remind me that there is hope. Because one day I will be that ray of hope for someone else.

Once I found that support system, I was able to research my disease and start taking matters into my own hands. Getting informed so I could make the best decisions for my health gave me some of the power back. I couldn’t change the fact I had RA, but I could do something about how it would impact my life.

I’ll be honest, there were still some dark days. I still have days where I wake up and am angry at the life I have lost. I’m angry that I have to take a handful of medication just to be able to function at a fraction of the person I used to be. Those days will come. On those days, I try to remember to be kind to myself. I seek out a friend who will understand where I’m at and will help me make it to the next day.

Most days I wake up and embrace my new life. I may not be able to work but I have the ability to volunteer my time and services to help others like me. I may be hurting but I have the freedom to take a nap or rest as needed. Being limited in my abilities has inspired new hobbies for me. I can finally read all those books that have been on my list for years. Being home all day, I can cook nice dinners for my fiance. I have the freedom to write, which has always been a passion of mine.

I know it’s not easy, this life we lead. I know there are times it’s hard to find happiness in the midst of the pain. And it’s okay to have some down days. The important thing is that you try again the next day. And remember that you are never alone. We are here, and we’re fighting with you.

 

My Focus On Healing

I’m not entirely sure where the time went, but it’s already the middle of October.

Some of you may remember that with Tracie‘s help, I chose to spend this year focusing on one word: Heal. While this year has provided many roller-coaster rides, I would still say that I am achieving my goal of healing both physically and emotionally.

Probably my biggest strides in healing happened when Cindy-Lou sparked a small idea within me that grew to be the Spoons 4 Spoonies project. I took the hurt I was still feeling and turned it into a way to share love. Though I will always miss Misty, knowing that she is still touching lives through me gives me a peace I didn’t think was possible.

I also owe huge kudos to Dawnie for her help on this path of healing. Her kind way of speaking the things I REALLY need to hear helped me to move forward from people that were still hurting me. Her gentle nudges gave me the push I needed to focus more on myself and my health. With her and Teala’s encouragement, I was able to drop around 30 pounds this year. For anyone battling chronic pain, this is a huge accomplishment. My illnesses limit what I’m able to do in terms of exercise and diet changes. But my lovely ladies helped me focus on what I CAN do and the weight melted off without my noticing. When I was weighed at the doctor a few weeks ago and saw that I was under the dreaded number for the first time since I became ill, I wanted to happy dance.

I’ve also made some strides in managing my illnesses this year. It might not seem like it, since I spent the better parts of August, September, and even October, in and out of the hospital and doctor’s offices. The difference is that I knew there was something not right and I didn’t rest until we found an answer for my symptoms. With a diagnosis, I’m now able to find the treatment that works best for me and move forward.

I’ve also taken a more active role in my health. I’ve learned that I have a say in how I manage my illnesses, and I’m making sure I am researching all options available. I’m trying new things and liking what I see. Yes, I still have achy joints. But I’m learning to focus on healthy ways to live with the aches.

All of these things have added up to better mental health. Yes, August and September were extremely stressful, but all in all, I am happier. Taking more control over my life and my health has helped to ease my stress and anxiety. Lower stress levels are also better for my overall health…who knew?

With November steadily approaching (Seriously! Where did this year go??), I’m looking forward to another Month of Positivity as well as the holidays. There’s a strong possibility that we’ll be spending some holiday time with my family, which I haven’t done since my fiance and I started dating. I’m nervous but also looking forward to making new memories to replace some of the unhappier ones.

I’m still focusing on healing, the year isn’t over quite yet. But I am feeling a little better each and every day…

When The One You Love Hurts

I’ve long known the hardest part of life is watching the one you love hurt.

I can take any amount of pain easier than watching my fiance in pain, emotional or physical. It’s hard because I want to ease his pain, to take it away, and make everything better.

What I often forget, is that it’s just as hard for him when I’m in pain.

Unfortunately, the nature of a chronic illness means that this is a near daily battle for him. Each doctor visit, each trip to the ER, each new symptom, he has to struggle with seeing me in pain, stressed, hurting, depressed. And there is very little he can do to help me.

Well, that’s not entirely true.

In his mind, there’s little he can do to help. Because to him, helping means taking my pain away. However, there are many things he does that are helpful to me. Cooking dinner, catching up on chores, the extra trips to the store for whatever item I can keep down today, rubbing my back so I can fall asleep, it all helps more than he knows.

I’ve realized over the last few years that I need to tell him when he’s being helpful. Not only to show appreciation, but so that he knows for the next time what works for me.

It took me ages to be able to ask for help. I felt like such a burden to him already, to ask for anything more killed me. It was also a ding to my pride. I wanted to be able to do for myself, I’m a grown up after all.

Just as I’ve gotten better about asking for his help, I’m getting better at communicating with him what things are helpful to me. It’s been a rocky road, and I still forget sometimes that he can’t read my mind. But we’re learning together how to navigate around all the curveballs chronic illness throws our way.

Now if we could just learn to catch those pitches and throw them back…