written by Amber Fuller, LMFT, owner of Fuller Living.
“You’re going to be dealing with this pain for the rest of your life, and it’s only going to get worse”
“32, wow. You’re so young. You have the spine of a 90 year old. At some point you’re going to lose control over your bowels and at that point you’re going to need surgery again”
These are two of the statements that I was told about a year ago that led me down a very dark path. I had a bout of depression (which I had never really experienced before) for a good 6 months. People don’t talk about it enough, you know, chronic diseases and pain and how it effects one’s mental health. I’m here to tell you, it’s not all rainbows and sunshine.
So, here’s the backdrop. I was born with a disease that basically makes my spine deterioriate significantly as I get older. It’s terrible, it’s painful, and I wouldn’t wish it on my worst enemy. That being said, it’s caused a really beautiful ripple effect in my life and in my family.
The Joy in All that Darn Pain
My ability to feel loved. I’ve always struggled with actually feeling loved. When I was diagnosed, I found myself sobbing in the arms of my husband, A LOT! I saw him step up, take care of some household chores, and do more with our kids. To this day, if I’m having a bad pain day, he’ll come in the bathroom and shave my legs for me. It was in all of this pain that I started to know and feel love. Somebody was doing the care taking of me instead of me for them, and I had absolutely no other option but to let him. I’ve had people criticize me for not being able to do as much physically anymore, and my husband is my biggest advocate, telling them to STAAWWWPPP, mind their own business, and that I literally some days can’t even walk from the bed to the toilet in the morning and have had to crawl. Love. I know the feeling of love, and what a gift it’s been. It’s like I say to my clients, “How can you experience feeling loved when you aren’t giving others the opportunity to show you that they love you?”. And it’s true, it’s so so true.
Another joy you ask? My disease pushed me out of the therapist chair and pushed me into an administrative chair where I went from chatting with clients about PTSD, to chatting to the local newspaper editor about our business.Growing from 2 providers to 9 in a matter of months. It’s been beautiful and I absolutely friggin love my job and wouldn’t trade it for the world. I will not let this disease steal my joy and I thoroughly enjoy kicking the disease in the butt.
I’m not going to lie, the first year was ROUGH! Coping with something that you know you will have for the rest of your life is incredibly difficult. But literally, the only other option is to slowly die. I knew from the very beginning that I needed to build a community of people that were going to understand what I was going through, support me through it, and tell me to slow my roll when I was doing to much physically. A good friend of mine, Julie Gunderson, has truly been a Godsend (which is why she deserves a shout out!). Teaching me how to go easy on myself, give myself grace, and not feel guilty doing whatever it is I need to do in order to take care of myself. She’s helped me crack mistaken beliefs and has helped me see truth. Good friends who get it are SO important and for me they’ve been the most important.
I think it’s important to not give up on trying new things. Feelings of hopelessness and depression can wash over you when you continue to try things and they don’t work, but to keep fighting is to not give up. I have a list of over 50 things that I’ve tried to help myself, from biofeedback to eliminating sugar from my diet, to injections and even surgery and none of it has helped, but I refuse to give up on finding things. It helps my mental health to continue to fight.
Positive thinking is such a powerful tool. In chatting with an old friend of mine this past week, I was explaining to her that there are people in my position who allow their diseases to eat away at their soul. They grow bitter, negative, and mad at everybody not realizing that their soul is in worse condition than their actual body. Positive thinking is so important. I often find myself cracking jokes about how one day I will end up looking down because I will notice that I just peed my pants…this will be my reality at one point and all I can do is laugh. To live without this kind of humor when you are in a situation like mine, is a death sentence and I refuse to walk that mile when I can control my thoughts and my attitude. This isn’t meant to negate the fact that it TOTALLY SUCKS ARS sometimes…but if I can choose to control my attitude (Which, ps. you can) I’m going to.
I worked very hard at finding a therapist who specializes in managing chronic pain. I just started seeing her two weeks ago. It also took forever to find somebody who specializes in it. She did keep bringing up this strength of “resilience” that I seem to have. Perception of pain, if you choose that perception, can teach you how to successfully and beautifully get through difficulty. It doesn’t mean you don’t struggle, and it doesn’t mean it’s not heavy, it just means you deal with it in healthy ways. It’s quite the compliment I’ve received, and it has been something I’ve worked on developing since childhood, however, pain and choosing that perception has definitely strengthened my resilience, and it can for you as well! That being said, catch me back here in 2021, because after I’ve worked through all of this, you can expect to find me walking with clients through their crappy chronic pain journey, helping people find hope and their own resilience in all of it.
Go easy on yourself junior, okay? It’s important. You will have people judging you, you will have to struggle through unnecessary and mean comments from people who don’t understand, but do your best to let it go. Surround yourself with people who encourage you to do less than the norm. It’s important. Make sure you always have a comfortable place to sit and if people aren’t willing to make that place for you, get up and leave. You matter, you’re important, and your comfort is necessary. If you have a day where you just need to binge on Grey’s and eat popcorn, do it. Your body is telling you something.
Two summers ago, I had a job at the local hospital as a licensed therapist on the mental health inpatient units. I was going home every night in SO MUCH PAIN. I literally went to bed every night in tears and the only relief I found was sleep. I showed up loyally despite all of this until I got to my breaking point. I was in our staff lounge having a conversation with a dear friend and colleague of mine letting her in on my secret of pain and tears. I told her I didn’t think I could do it anymore. I was nervous about giving my notice and felt so loyal to the company. She made a good point and said to me, “Amber, your body is trying to tell you something” and this has stuck with me since. She also said this, ” You are spending a lot of energy on being loyal to people who probably aren’t going to be loyal back to you”-mind blown! I had never thought about this before. I have a very loyal personality type and being loyal came naturally, but didn’t think about how not everybody is like this. It’s not that it’s their weakness and it’s terrible, it’s more that it’s my strength and when you chronically are in pain it’s SO important to pick your “loyalties” well. You literally only have so much energy, be careful who you spend it on. Have faith that your higher power will take care of you when needed, but be wise, he gave you a brain for a reason. I’ve coped with my pain by carefully establishing where my loyalties should be, how to be kind to those who don’t get that much of my loyalty, and figuring out how I will be a cheerful giver of energy in times that I’m tired as well as doing my best to not get to that point. I will forever be grateful for this beautiful co-worker/friend/colleague, who encouraged me, hardcore, to take care of myself that evening.
Lastly, a healthy way to cope with chronic pain/illness is to learn how to delegate. I don’t just mean tossing tasks to any random person, but, yes toss away, but to the right people. Find people in your life who love you enough to value what you can give to them and can help you with the things you need help with in an effective way. Delegate to the right people, because if they’re the wrong people, you’re creating a mess. And, for myself in business, if I delegate to the wrong people it could not only hurt the person it’s being delegated to, myself, but also the people we serve. Be mindful of other’s strengths, don’t be critical, don’t be resentful if they aren’t the right person to delegate to, but love them where they are at, and find somebody else to delegate appropriate tasks too. Your life WILL be easier when you delegate. It allows for healing, rest, and dreaming. Allow your higher power to work through others as well. You weren’t meant to build “Rome” all by yourself.
What’s Been the Hardest Part?
(I’ll add this little part just for some self-disclosure and real talk.)
My kids. When the enemy gets a hold of my mind and my heart I find myself alone in my bedroom, the bathtub, or my car, weeping because I feel like such a shitty (excuse my necessary language) mom. I know that this is a lie. And I know that quite the opposite is true. And even though my son is right there to say, “Mom, you’re the best mom in the whole world and don’t you dare say that about yourself” and the other one is right there with his arms wrapped around me yelling “huggies!! Kissies!!!”, I still struggle. I haven’t been able to pick my two year old up since he was about 8 months old. I can’t wake up in the morning and hit the GO button. I can’t chase them around and I get tired so quickly. Some days I’m crabby because of pain and even though I’m not a “yeller” or a reactive mama, crabbiness tends to push me into isolation and then they miss out on me. I know that I’m way to critical on myself, but if I’m being honest, it’s just the hardest part about managing my disease. Two weeks ago I was able to open up to my therapist (during a time that she wasn’t talking about self-care and breathing) and tears streamed down my face. She reminded me that the Lord takes our pain and uses it for the good. So here’s to hoping that both my children go into the medical field and help those that are hurting either physically or emotionally. Here’s to hoping that I learn how to see myself the way that my kids see me.
I know, I know, this is a rather weird little blog. My hope is to continue to write about this process as I go along and document my journey as an LMFT, business owner, mom, and wife. My hope is that maybe, just maybe, somebody will find themselves feeling a glimmer of hope in a swamp of pain and be able to keep on fighting. Hopefully, that person will be able to silence their thoughts and tell themselves, “this to shall pass”, hop into the bathtub, crank up the music, and/or find a good friend to chat with/text with and cry with. Hopefully, it helps that person know that they aren’t alone, and even though it doesn’t make the pain go away, it helps the person feel a little better emotionally. Hope. That’s my goal. I know the darkness it brings, but there is hope.