Sometimes, I Struggle

Today, I am not eloquent or articulate. Because today is one of those days. One of those days where life just feels harder for the living. When just shuffling to get a glass of water feels impossible. And that sucks, let’s be honest.

I’m typing this whilst lying against a heating pad in a weird sideways propped up position in my “nest” on the couch. I’m surrounded by my meds and all the current things I’m trying to distract myself with- knitting, books, tv, cat, small sketchbook, etc. None of them are working so I find myself here, writing to you, dear reader.

I know I’m not alone, and that helps a little. I hope you know you’re not alone either. I’m with you, I promise. And even if you know you’re not alone but still feel like you are, I’m with you too. I understand that feeling all too well. That feeling like life is just living itself without you. I get it. I really, really do.

I don’t have any words of wisdom today – I just want to virtually extend my arms to all my fellow sufferers. Those with chronic pain and illness, those with heart aches, those with mental or spiritual struggles. I’m here, sweet fellow human. Let’s meet across time and space in that place where our pains are but a memory.

More to come…

The Come Down

I’ve just returned from a trip to Santa Fe/ Albuquerque and let me tell ya… the come down is HARD.
Not familiar with the come down? Allow me to educate you, dear reader.

Come down – ˈcəm-ˌdau̇n
(Noun)
The state of burnout in which a chronic illness/pain sufferer finds herself after excessive and/or extensive expense of energy – either physical, mental or spiritual
(Adjective)
a) : worn-out, exhausted
b) : being in poor repair
c) : completely undone
(Verb)
a) : to be spent to exhaustion
(Intransitive verb)
1 : to cease to operate because of exhaustion of motive power
2 : to decline in physical condition or vigor following extensive physical, mental, or spiritual activity
(Full disclosure: I may have borrowed bits of this definition from the Merriam-Webster definitions of run-down and exhaustion, among others)

A Kiwanis cabin at the Sandia foothills

I find myself in this state after every “vacation” and it is one I’m willing to accept. Why, you may ask? Because the special memories are worth it to me. I accept all the planning – of activity, medication scheduling, and rest breaks. I accept the occasional guilt of not being able to do/see all my partner or I may have wanted to (and the ensuing guilt over feeling the guilt). I accept all the extra luggage I must plan and bring: medications (pre-distributed in all their many time-allotted slots), assorted pillows to support me on long car rides, clothes that are comfortable enough for allodynia-riddled skin and sore fibromyalgia muscles, shoes appropriate for tender, neuropathic feet, heat pad and/or ice packs for recovery, water and caffeinated beverages to propel me through the day and hold off pain headaches, and distractions to help me cope when I am overcome with pain and have to stop physical activities.

And.
I accept the come down.

View from the Dale Ball trails

While vacations truly are work for me (before, during, and after), the sweet memories I can relive as I scroll through photos on the toughest of days are beyond worth it. Additionally, on those hard days, my husband and I can recall those memories together, discuss our favorite moments, tell each other stories, and know there are better times behind and before us. While I will have a trace of the memory of being in terrible pain and not able to do as much as I would have liked, my anecdotal history has proven to me that the pleasant memories I have will far outweigh those of pain. And that, my friend, makes the preparation and yes, the come down – every little bit- worth it. And one day (though not any time soon) I’ll do it all again.

Beautiful memory of the warm sun on a cold day, surrounded by God’s creation

As to how to cope with the come down in the meantime? I take a self-prescribed several days of extensive rest, stretching, hydrating, hot showers or baths, and positive distractions in the form of reading, music, journaling, coloring, or passive art projects I can do while reclining. In summary, I do all I can to treat my body with gentleness and gratitude for all it carried me through in the days prior.

A magical snowy morning enjoyed from our bed and breakfast in Santa Fe

Have you or a loved one experienced the come down? If so, how do you cope with it? What is a vacation memory that made it all worth it?

I’m Back (again)

After a years-long hiatus I have returned to the blog. A lot has happened that I won’t bore you with – at least not today. I’ve had an ICU stay, more hospital stays and visits, a move, more tried treatments than I can list (some of which worked, some of which didn’t), and a new diagnosis or two. Through it all I have needed time to process everything and learn a LOT of lessons. Some of these lessons I’m still in the process of absorbing but I feel like I’ve reached the point where I’m ready to talk it out.

I want to share what I’ve learned and am learning with you, dear reader. Above all I hope and pray that my experiences with chronic pain and illness can be beneficial to someone. Even though I live in a world that involves suffering, I hope the experiences I endure will produce in me an increased sense of compassion, love, empathy, and hope. I often struggle with confusion about my purpose in this life but just because I don’t understand it fully at this time doesn’t mean it doesn’t exist. I feel that if I can share my lessons and increase awareness and understanding of chronic pain and illness then perhaps I will have made a difference.

I recently reached out to friends and asked what they would like to understand about me and the chronic world I live in. I’m excited to dive into some of those topics with you and hope that we can all gain a little knowledge and expand our empathy for each other.

Is there anything you would like to know about me or chronic pain/illness in general?

On Acceptance

During and after reading You Don’t Look Sick (see review below), I did a lot of thinking and reflecting on how I had been dealing with living in chronic pain. The book breaks living with chronic illness into four phases: Getting Sick, Being Sick, Grief and Acceptance, and Living Well. As I was reading, I was pretty sure I had already dealt with all the grief, accepted my situation, and moved on to the task of learning how to live well. The more I read however, I realized I was still stuck in the Grief and Acceptance phase. Thinking back over the last six months, I saw how I had gone back and forth between grief and acceptance multiple times. I would make some headway towards acceptance, then have a really bad doctor’s appointment or a huge pain flare and I would swing right back to grieving who I was and who I may never be.

For example, in December I went to several appointments in one week where I kept hearing the same thing: The prognosis is not good, we don’t know what is causing this, we may never know, and you are probably going to have to deal with this the rest of your life. Even though, deep down, I already knew all of this, it felt like a blow to my heart. I didn’t realize how much I was clinging to who I used to be. I was still imagining myself as a fit young woman full of energy and productivity trapped in a broken, painful body. I wasn’t accepting the body and life I currently have, so I wasn’t able to fully live well within my limits.

Basically I felt like a broken version of my old self and, in turn, was rejecting the person I had become. I felt that somehow I was less than whole, a fraction of who I used to be. It wasn’t until I was reading about acceptance that I realized how messed up my thinking was. I’m NOT broken. I am whole person. I’m just different than I used to be (which, by the way, is actually a really good thing). I’m smarter (I’ve learned a ton about pain and the medical field), I’ve experienced deep and wonderful friendships, my faith is stronger, I can empathize and relate to many more people, and I appreciate all the little things and blessings in my life so much more than I ever did before. Having been forced to slow down, I have also been forced to learn how to live in, and appreciate, the still and quiet moments that come with having to rest and stay at home a lot.

As all these revelations became clear in my mind I felt so much more at peace with myself and my situation. I felt… acceptance. Mind you, this didn’t happen overnight. I thought about all this over the course of several weeks. But, let me tell you, being in a place of acceptance and peace is so much sweeter, and easier, than fighting through grief. This isn’t to say I’m never going to grieve again. I’m sure there will be hard times in the future, but I will be able to look at the lessons I’ve learned and remember how much better it feels to accept. For now though, I’m just looking forward to moving on to the next phase: Living Well.

…more to come…

We all battle through grief and acceptance through life in all kinds of situations. What realizations brought you out of grief to a place of acceptance? Did a person or book help show you the way?

You Don’t Look Sick – the book

Hello, friends. Today, I want to review a book I mentioned some time ago called You Don’t Look Sick (the new edition). I excitedly pre-ordered my copy last year and it arrived just after its release date the beginning of this month. As I read through this great guide to illness I found so many explanations of thoughts and feelings I hadn’t previously been able to put into words regarding the nature of chronic illness and its effects.

The book is written by Joy H. Selak and Steven S. Overman, MD – a patient and her doctor. Having both views represented in the same book is invaluable. One can not only empathize with Joy, the patient, but can gain beneficial insight into the thought process of doctors and great tips on how to navigate the medical world by one of its own. After reading this great reference I feel so much more at peace living with chronic illness. I think a lot of that is due to how Selak and Overman break up chronic illness into phases that one experiences, then explain and advise the reader on how to navigate each stage. The phases are Getting Sick, Being Sick, Grief and Acceptance, and Living Well.

Selak illustrates her own experiences of living through each phase with multiple chronic issues, and explains how she continues to cope and live well despite her illness. Alternatively, Dr. Overman discusses how he helps his patients through each phase, offers tips on how patients can maximize their experiences with their doctors, and explains how to build a team of medical professionals to get the most out of one’s treatment.

I cannot recommend this book enough to those who are currently living with chronic illness as well as the friends and family of the chronically ill. It is my new favorite resource and I am sure I’ll reference it many times to come.

That’s all for today folks. I’ll be back tomorrow with my reflections and lessons learned from this book. It has really changed how I look at myself and my situation, allowing me to experience much more acceptance and peace. It is so refreshing.

…more to come…

Do you have a favorite book or reference that has helped you through a difficult time? What lessons did you learn?

When it Gets Weird

If you’re friends with me on Facebook then you saw my recent post about coming up from underground. I’ve been out of commission for the past several months and I’ve finally emerged from my hibernation. I know you were probably going through Mel withdrawal, but I promise, it’ll be ok. I’m here now. Shhhh.

I was trying to explain to my pal Krista last night just why exactly I was hiding out. It’s complicated but I think I was trying to focus all my attention on myself, on the steps I needed to take to find wellness and healing, and dealing with the difficulties of all that entails. My husband was away on business so I was by myself trying to figure out how to live a physically hindered life on my own. Although I had massive amounts of help from my mom (who flew out here for several weeks) and my friends I just couldn’t muster the energy to get online, to put myself out there, to reveal what’s going on, to share my story, etc. I just couldn’t deal with it.

It wasn’t till later when I was talking to the hubs (who’s home now), that I realized I think one of the roots of all this is the stark contrast I see between myself and him and so many others who have their health and are so capable of living life to the fullest and doing everything they want to do. In them, I see my old self. I see things I used to love doing and I know how it used to feel to do those things. I also know how it feels now, when many of those activities are no longer feasible.

And it’s weird. It just is. I see all my old nursing friends’ posts about finishing up finals and preparing to graduate and my heart just breaks. I’m so proud of and impressed with them and in some ways I live vicariously through them but … I just think about how that could’ve been me. If God just allowed me to be well, if I just had the strength, if, if, if.

I know I’m just playing the coulda woulda shoulda game and we all know how pointless that is, but sometimes one can’t help things crossing their mind..

So here I am. In this weird, painful place knowing that it’s up to me to choose how this is gonna go. The question becomes how do I deal with this? I think it’s OK to feel a little self-pity and acknowledge the difficulty of where I’m at, but then what? Am I going to stay in this place and allow myself to keep going down this path? Or am I going to get my ass of the couch, put a good jam on the record player, and choose happiness? 

Don’t get me wrong, I see my blessings. I KNOW just how undeniably amazing the people are in my life and I am SO thankful for them. My motto is “Never Give Up” and of course I’ll hold to that. I’ll never stop searching, trying, researching, going, going, going… But. That doesn’t change the fact that sometimes things are harder than others. Sometimes things are weird. 

Over the last month or so I’ve been trying to make a point do some of the old things I loved in an adapted way. My buddy Cassie recently pushed me in my wheelchair all over some accessible trails in one of the state parks over here, and she even helped me cook an amazing meal. I’ve been making a point to put on a nice outfit every day and spend the time on my appearance that I used to. Not only do I then feel great, I look fabulous which helps narrow the gap I see between myself and others as far as appearances go. So what if I have a cane/walker/chair, I look better than you. 😉

And, now that I think about it, that’s probably one of the best ways to overcome the weird. To keep doing the things I love. To make them possible in one way or another. Additionally, I think it’s important to find new things to love. New hobbies or activities that are possible and enjoyable and stimulating to the mind and body.

I write this knowing how easy it is to type words and the difficulties of actually living out what I’ve said. There will be days that are still hard and I’m sure I’ll still get frustrated and annoyed and even jealous when I see what I can’t do but I also know I gotta keep trying. I don’t have a choice. I mean, I guess I could just sit around and eat cookies all day, but that’s not living. If I want to live, and live well, I have to keep going, keep trying, keep making the effort. It may be twice as hard for me as it is for others, but maybe that means it’ll be twice as worth it too…

I’m still trying to figure it all out, but in the meantime I’ll leave you with some words from No Doubt’s Settle Down:

“I’m fine (and nothing’s gonna knock this girl down)
I’m hella positive for real
I’m all good
No I’m fine (and nothing’s gonna knock this girl down)
It’s kind of complicated that’s for sure”

Amen.

What do YOU do when it gets weird? How do you get out the “weird funk”?

… more to come …

On Help

My pain has been taking me on a pretty wild ride the last few weeks and it’s been hard to even sit with the computer on my lap. I’m sure you’ll forgive my lack of posting. 🙂

I wanted to write a little more on the topic of help – admitting you need it, actually asking for it, and saying yes when people offer it. All of these things are SO hard to do, sure, but by accepting help, you will feel blessed and unbelievably grateful, and the people that assist you will feel so glad that they were able to do something for you. When people are sick or in pain, the healthy people that love you really want to do something for you because they hate seeing you sick and wish they could do something.

I’m saying all this from experience. I finally broke down about a month ago and realized I really can’t do everything for myself. It was a big step for me as I LOVE to feel in control and independent and “not weak.” Anyway, I realized by not asking for or accepting help, I was becoming miserable, barely able to accomplish necessary daily tasks, much less do anything beyond that, all so I could feel “independent.” So, I called my sweet Momma (who was more than willing to fly halfway across the country) and asked her to help me with those daily tasks and essentially become my caregiver for a while. I also started accepting help. My neighbors offered to stop by whenever they go to the grocery store and ask if I need anything. How sweet is that?! I said yes. My dear lady friends at church have brought me meals, driven me to doctors appointments hours away, picked me up for Bible study and just given me so much love. It has become clear to me that there are many people who are willing and want to help. I also found out that in receiving help I feel more strong and independent. How weird is that?!

So, you see, I have been extremely, undeniably blessed, just by saying six words: “Can you help me?” and “Yes, please!” 🙂 The ones who have assisted me have also felt a sense of fulfillment in knowing they have helped someone and knowing that I might feel better in some way from their contributions. It’s really a win-win.

I hope this will inspire you to start asking for help, or to start offering it. It truly is a blessing for both parties.

…more to come…

Invisible Disabilities

Hello dear readers! I’m back!! I received a series of six ultrasound-guided nerve blocks on Monday, so hopefully the steroids will be kicking in soon. Today I feel like I might be getting a little relief. Yay! 🙂

My mom recently found an amazing website: the Invisible Disabilities Association. It is an amazing group, founded by Wayne Connell, the husband of Sherri, who lives with chronic illness. This husband and wife team has created an amazing group dedicated to educating friends and family about invisible disabilities and providing a safe place with lots of useful, helpful information for those who live with these disabilities.

For Invisible Illness Week, Wayne and Sherri were interviewed by Lisa Copen (the author of many great books on chronic illness) for an informative seminar/video. I wanted to share this video with all of you as it is wonderful and would be helpful to anyone who lives with or knows someone with chronic illness and those who suffer as well. It spoke to my soul. Here’s the link: http://invisibleillnessweek.com/2012/09/10/what-to-say/. It’s 40 minutes long, but well worth taking the time to watch.

Wayne and Sherri have also written an amazing little guidebook called “But You LOOK Good”: How to Encourage and Understand People Living with Illness and Pain. I was nodding my head in agreement through all 50 pages! It’s a quick read, but so helpful.

I hope you, too, can get some encouragement from this association, the seminar, and/or the booklet. Do check it out!

…more to come…

Be Back Soon

The last couple days I have been experiencing pain levels that are making blogging difficult. I wanted to apologize for not being around and let you know that I’ll be back up to my usual blogging just as soon as I can get this pain spike calmed down, hopefully really soon.
In the meantime, remember: NEVER GIVE UP!

…more to come…

Do What You Love

I was watching Julie & Julia tonight (again) and it got me thinking. I actually used to be a baker and a passionate cook, always hosting dinner parties and the like. I still LOVE cooking but just can’t tolerate the grocery shopping or standing up in the kitchen for any length of time. I’ve basically given up cooking for these reasons, barely doing anything besides making smoothies, heating frozen food, getting takeout, or making very simple and quick meals.

 

Anyway, I think it’s a shame that I’ve given up doing something I love. Like I mentioned earlier, it’s so important to do things that bring us joy. So I’ve been trying to figure out how I can manage cooking with my disabilities. I already keep a barstool in the kitchen which helps, but I think it’s time to enlist the help of my loved ones. My mom is coming soon and I think I’m going to pick out some recipes and have her help me get the ingredients and cook the dishes. We did a little cooking together when I visited my folks a while back and I had a blast. So what if I’m not doing it all myself. I want to cook dammit! 🙂

What kinds of things do you/did you love that you have stopped doing? Can you find a way to do it again?

…more to come…