TILT: In pinball,  “The tilt mechanism registers motion applied to a machine; if too much motion is applied this way, the game is said to “tilt” and the player is penalized (losing the ball in play, the bonus points or a combination of both are the most common penalties). Some EM machines void the game of a player when tilted.” ~Glossary of Pinball terms

I am pretty sure we all have days that “TILT” us. Here are a few tips to help make sure that you aren’t out of the game. These ideas come from the knowledge that pain is a daily factory.

1) Wake up  ~ Yep. That one is important. It isn’t always the pleasant feeling we’d like it to be. I have had mornings (and nights) in which all I can think is, “Really? I am awake AGAIN?”  It took a long time for me to accept that it is OKAY to be awake even when “normal” people would be asleep. Although I know I NEED sleep, I have come to recognize that the more frustrated I get about NOT sleeping, the less likely I am to actually sleep. The lure of the escape of sleep is also something to wish for and pray for when coping with chronic pain…especially, at the extreme levels associated with arachnoiditis. But, believe it or not, accepting your wakefulness eliminates the stress (and related pain) that comes with fighting it. The Price of Pain is that we question the value of being awake in ways we may never have done before. Each day we are given is a blessing. Sometimes, the blessings are VERY HARD to find but, they REALLY are there. Wake up so you don’t miss them.

2) Love ~ Love yourself, your life, the world as often as you can. Your pain is NOT punishment. You deserve to wake up and tell yourself, “I Love You.”  Out loud, in the mirror or laying in bed with a gentle acceptance of all of the aching parts of yourself and for the strength in the parts of you that are working daily to compensate for that; say it, “I Love You for all that you tolerate, for all that you are, and for all that you will be.” Say the words you wish you could hear from others. Give this gift to yourself. You deserve it.  Find out more about ways to give yourself this gift.

3) Gratitude~ CONSTANT PAIN can make it difficult to come up with this one. If you start with just ONE thing, big or small, it will eventually lead to others.This doesn’t mean you stand up and yell, “Oh Thank You So Much for ___-!” This is a subtle, quiet, gently thing. [Unless of course, you feel so inspired that you must stand up and yell. In which case, by all means go ahead and do so.] Even if your whisper of gratitude is about the exact same thing every day, recognition of that blessing is important to your quality of life. In a notebook, or just in your head- if getting pen and paper hurts too much- be thankful for something in your day. From my journal: “At least I didn’t throw up on anyone today. Nearly, but I didn’t. That was good…I smell honeysuckle out in the yard. That’s nice….The paisley print here looks like little ameobas moving through a blue mist. I am glad we got this comforter. It’s soft and warm and doesn’t slide off the way the other one did.” There is no judgement in this gesture of gratitude. The things you are thankful for now, may be extremely different than the things others would mention.

4) Know Your Power~ Even in the midst of excruciating pain, WE get to decide the shape of our own day.

Know yourself. It took some training, and I still forget sometimes but, in the worst moments it always helps me to ask myself, “What can I do right now that is good for me?”  “What can I control in this moment?” “Is there any beauty here that I can focus on instead of _____?”  “What do I NEED right now?”  Know that you CAN ask. Ask for help when you need it. This can be tough when I feel like my pain and situation will NEVER allow me to be able to repay the “favors” given. I am an independent person by nature and asking is always a challenge. I HATE it when I cannot just do something myself. I have come to recognize that I am stronger when I let go of the hate for the necessity of it and ask for help so that I have the ability to do the things that I CAN do instead of killing myself to try to do the things I can’t or shouldn’t.

Know that you can set boundaries and expectations for the people around you. I had a list for my family of the chores and tasks that I just needed them to take over. It just took too much out of the quality of my day to continue to try to do these things. I posted it near the kitchen sink and we talked about it. I had to let go and trust that even if they didn’t do it “my” way; at least it was getting done. (In case you’re wondering, I suck at this and it was NOT an easy transition for anyone. We still struggle with it when they come home from their assorted young adult adventures. But, it did, eventually, make a big difference in the quality of my life with Arachnoiditis.) Doing this also gives them the power to help you when they really don’t know what to do. It eases some of their own sense of helplessness in a difficult situation. There are different degrees to which each family member is able to assist in this way. Age appropriate chores are a good place to start and can help strengthen Family Focus.

5) Simplify~ As important when living alone as it is when living with others. De-clutter your environment, your expectations, and your obligations by asking, “Do I/We really need this? Want this? Use this? ~what purpose does it serve?”  These are thoughts and issues which I addressed when I forced to be horizontal. I make a LOT of lists when I am laying down. Some get implemented, some get thrown out. However, all of them distract me from pain,frustration,boredom, and idleness DURING the laying down part. There are many searchable resources online for this. Since I already owned it, I went back to, Simplify Your Life with Kids by Elaine St.James. It is a great resource for identifying some of these areas that may be affecting your life. I excluded and/or delegated some of the more physical tasks described in her book.  Have one place in your home that is not full of information, obligations, or life debris. Allow others to join you there as you see fit but, be sure it is understood that THIS is your simple sanctuary. It is a place to heal and pay attention to what your body and mind need RIGHT NOW.

6) Know Your Pain Management Resources and Health Options 

• Adaptive Devices & Modalities
• Holistic Healing Practices
• Experimental Treatments
• Alternative Medicine
• Research & Discovery
• Behavior Modifications
• Spirituality and Healing
  • Healing Art Activities
  • Opportunities for Social Connection

7) Go Gently ~ “When it comes to committing to a daily practice: no matter how long (a week, a month, a year, or forever) we are going to be confronted with all manner of negative thoughts that interfere with our intention….Yes, we can show up and face the blank page, without being mean to ourselves.” ~Lisa Sonora on Creative Practice. The same is true of daily practice for Coping with Arachnoiditis or any chronic illness or pain condition. Approach new plans and new habits with gentleness for yourself, those around you, and your environment. It’s about meaningful moments not forcing fabulous-ness.

8) Adapt ~ Lovingly  Acknowledge Your Limits Today so that you might expand them tomorrow. Recognize the ways in which you can alter your environment to suit those limits. Discovering adaptive furniture/devices, Changing how often/how long you stay in one position, moving differently, storing things you use most in easily accessible locations, etc. The little things can make a big difference. When Change Chooses Us, it’s BIG.  But, little adaptations afterward that may seem so simple and obvious you don’t know why you didn’t think of it sooner can smooth the path for bigger goals. (I.e.I have a dog. I love him. I HATE mopping/cleaning my floors because of the way that it triggers all of the ick in my body when I do it. What I HATE more than mopping~ Dirty Floors. To minimize the effort involved, my dog now has his own set of small towels strategically placed by the back door with a hook to hang the current one on. His feet are wiped every time he comes in the house. Pets will adapt, too if we show them how. Pets can also HELP us adapt. Their are many known Health Benefits to Pet owner ship but, it is a physically demanding responsibility and long term commitment. Be sure you know all the facts before seeking a NEW pet.)

9) Celebrate Your Achievements~ Set Goals “Start where you are and with what you see.”~Ghandi  ONE of the most devastating discoveries for me after Ararachnoiditis was realizing that in my injured state, it was extremely painful and complicated to paint or make art of any kind. Through all of my life’s changing rhythms, anytime I was hurt, angry, frustrated, confused, disillusioned, or lost~ two things had remained constant; the ability to make art and the ability to walk it off. It seemed I no longer had either of those when I needed them the most. As a consequence, my goals shrank and became more immediate.Journal entry: “Today, I crawled to the toilet by myself.It only took 27 minutes to get back to the bed.” The day before I had been there 45 minutes before I dared to try to get back to the bed that was approximately 15 feet away from the bathroom. Although I was painfully aware of what was lost, the ability to see this difference as an accomplishment instead of allowing myself to focus on all that I had done before but couldn’t do right now was truly a blessing that gradually transformed into discovering new ways to do the things that I wanted/needed to do. My reward for this achievement~ I was able to pee in private.

Later,  I would reward myself with things like a slumber party night with my teen daughters (they would come in and lay on my bed with me and we’d watch an episode of Friends, play line-drawing and doodling games, or if I was feeling particularly competent we would play Scrabble…sometimes, they would just tell me about the way they spent their day), or ~as advised by another Survivor~ I’d get some pretty pajamas because being in bed most of the time, these were more comfortable than regular clothes but, made me feel like less of a sick invalid.Eventually, I had day pajamas and night pajamas and threw away ALL comfy clothes that had any stains or holes as these made me feel worse about my situation. {Read as:  I asked the kids to bring me a trash bag for my room. Each time I changed my clothes, if I reached for the old-faithful sick-day clothes; they immediately went into the trash bag. When I was able to manage the stairs myself, this bag went down ahead of me and eventually made it to the dump in the next trash run.}

10) Have a plan for the next TILT!~ To cope with the two steps forward and three steps back phenomenon Remember you will REGRESS. There will always be good days and bad days. Life is like that. Wander Land cards are good way to plan for those regression days. Don’t be afraid to ask for help on these days. Make sure the people you trust who are close to you know that this might happen. If you don’t trust anyone in your immediate circle not to judge you harshly, reach out to one of the many support networks available on social media, call your local hospital, patient advocate, or counseling program to find out if there is a real time chronic pain support group near you. There is a fine line between the benefits of solitude and the crippling effects of isolation. Know where you are on that line so that you can be prepared the next time you TILT!

BONUS TIP: Any day is a good day to Make Art, Look At Art, Listen to Art, and Appreciate Art.