Maintaining Relationships During Wellness Challenges

One of the "5 Key Concepts of Recovery" is support. When I think of support, I think of relationships and community. And yet, when I am struggling, positive interaction with other beings can be a challenge. What can we do to maintain our relationships and community connections when we or our loved ones are experiencing depression, pain, anxiety, and other difficult states? How do we keep from driving people away when we need them most? Here are some things I try to do to take care of my support system. I'd love to read some of your ideas.

1.  Breathe deeply, then respond. Taking a moment to clear your head could make the difference between a conversation and a fight.

See below for image source.

2. Avoid support system burn out. Love may be infinite, but time and energy are not.

• Spread the love around. The more people you can trust to help, the less pressure there will be on your closest supporters.
• Don't accept help you don't really need.
• Ask whether people are available to listen before verbally processing.
• Help your supporters. This will contribute to maintaining balance in your relationships, and helping others is a wellness practice that benefits the helper, too!
• Do self care together. My favorite self care to do with others are walking and eating nurturing meals.

3. Communicate!!

• Make agreements about how to communicate about helping each other when everyone is feeling well. Expressing preferences and setting realistic expectations before we need them can prevent problems in a crisis.
• Let people know you're struggling. Your supporters may not know how you're feeling. If your behavior changes in response to pain or suffering, knowing what's going on for you can help others avoid taking your actions personally. It also creates an opportunity to offer help.
• Ask for help specifically. You know what you need. Ask for help with the things you are least able to do without assistance.
• Receive suggestions with an open mind. Do you have concrete evidence a suggestion won't work for you? Will you be harmed by trying? If not, it might be worth a shot!

3. Use your insights into yourself to guide how you interact with others.

• Avoid flaking. Try to predict your energy level (spoon theory). You may not be up for going to a party after a therapy or bodywork session.
• Make flexible plans that can accommodate unforeseen changes. For example, if you'd planned to go for a walk, but you are experiencing a lot of knee pain, swimming or watching a movie could be better options that still give you a chance to be together.
• Make deliberate decisions about whether now is a good time to interact with people. Sometimes it's hard to be kind. Other times, someone else's company is just what the doctor ordered. You can always change your mind.
• Check in with yourself so you can offer help honestly - What are you realistically available for? Maybe you aren't actually free to listen to your friend process until 3am when you have work the next day, but you are available to have tea and listen after work.
• Try to recognize when you're acting like a jerk and stop! If you can't change your behavior, stop interacting. On your own or with a third party, think about what else is going on that might have influenced your behavior. Knowing what triggered your behavior can help you avoid acting rude in the future. 

5. Be courteous.

• Apologize if you were mean or rude. Keep it simple. apologize for your behavior, not your state of being.
• Express gratitude and appreciation. From a simple thank you to a thoughtful gift, gratitude is good for you and the person you are thanking.

What did I miss? Please share what you do to protect your relationships in difficult times.

Hand hexagon image source: http://www.chumans.com/blog/wp-content/uploads/2012/05/Supp-Sys-6-150x150.jpg

OpenSF Conference

The OpenSF conference was inspiring! Now there are some exciting new groups I'd like to form: a support group about sex for people with disabilities and an expressive arts play group. And writing ideas: pleasure is good for you, sex as a wellness tool, and can open relationships destroy capitalism? I'll be writing about all that and more as soon as I've had a chance to let it all sink in!

Learn more about the conference at http://www.open-sf.org/.

The Spoon Theory

But You Don't Look Sick is a site for people with invisible disabilities. In their words: "The mission of ButYouDontLookSick.com is to help everyone with a chronic illness or invisible disability, in order for them to live their lives to the fullest and not feel isolated and alone. We believe that our medical circumstances have put us in a unique and understanding position, so that we can help each other through similar difficult times. We hope the information and community on our site can aid people in leading better lives through knowledge, networking, friendship and most of all support."

My favorite page on But You Don't Look Sick describes "The Spoon Theory", a useful metaphor for how it can feel to live with the reduced energy capacity that can come from a chronic illness or disability. I believe this idea might be useful to anyone who may need to pay close attention to their stimulation levels such as Highly Sensitive Persons, people with autism, people with Asperger's Syndrome, or people with ADHD.

The Spoon Theory uses spoons to represent energy. We each get a limited allotment of spoons each day. When we use all of our spoons, our choice is to rest or take spoons from the next day. If we decide to take spoons from the next day, we will have fewer spoons to use tomorrow. This means we need to budget our "spoons" just like we might budget money or any other limited resource. This can be very useful for planning and prioritizing activities.

Here's an example of how I could use this idea to describe planning my day. Let's say I normally have 20 spoons per day. Taking the bus usually uses 2 spoons per trip, getting ready in the morning uses 1 spoon, and meals use 2 spoons per meal. (2 x 2 bus spoons) + 1 getting ready spoon + (3 x 2 meal spoons) = 11 spoons So, on any given day, I am likely to use at least 11 spoons. When I go to a street fair, I use 15 spoons for the fair in addition to 11 spoons I use every day. When I chose to go to a street fair on Saturday, I used at least 26 spoons. I had to borrow from the next day, so I only have 14 spoons for Sunday. If my friend invites me to go hiking Sunday (6 spoons), should I do it? Probably not, because I am likely to use at least 17 spoons, and I only have 14! I don't want to use spoons from Monday because I'm going to need all 20 spoons to work on Monday.

Another way to use the spoon theory is for prioritizing activities. I'll continue with the previous example. The Sunday after the street fair, I have 14 spoons. Hiking would take too many spoons, so I've chosen not to go. Can spend some time with my friend without taking spoons from the Monday? Yes! I can choose to spend fewer spoons with my friend. If my friend comes over, I don't have to take the bus, so I save 4 spoons! That means I'll only need 7 spoons for the rest of my necessary tasks. If my friend and I order take out, I could save 1 more spoon because take out uses 1 spoon instead of the 2 spoons it takes to cook. I'll still need to use 6 spoons for my day. There are plenty of fun things my friend and I could do with the remaining 8 spoons. The day is saved!

I can also plan ahead to save spoons for things I want to do in the future. I know that doing laundry uses a lot of my spoons. Going on a date also uses many spoons. This means I'd much less likely to choose to do laundry on a day that I have a date so I can save my spoons for what is more important to me. How do you prefer to use your spoons?

I find this metaphor most useful when I need to explain to others that I need to budget my energy like some people budget money or time. How is this idea useful for you?

30 Things About My Invisible Disabilities You May Not Know (reposted from my Livejournal post of Sept. 18, 2009)

1. The illness I live with is: I've had many different diagnoses (RSI, carpal tunnel syndrome, tendonitis, etc.); the bottom line is I have chronic pain in my hands, arms, neck, and back that is made worse by things like computer use and other repetitive hand and arm work. I also am effected by Seasonal Affective Disorder (SAD), though I don't think it's a disorder. I identity as a highly sensitive person which means I am easily overstimulated, so I have to take really good care of myself to prevent intense physical and emotional symptoms of stress like depression, anxiety, GI problems, and pain. (Being an HSP is an asset, too.) My left eye is pretty much blind.

2. I was diagnosed with it in the year: RSI: 2002, SAD: 1999, HSP: 1999, Left eye: 3rd grade

3. But I had symptoms since: RSI: 1999, SAD: adolescence, maybe earlier. HSP: all my life, Left eye: probably all my life... I don't really know. I didn't use to ever use that eye.

4. The biggest adjustment I’ve had to make is: Learning to ask for help. Having patience with my body's needs.

5. Most people assume: I'm young and strong, I guess.

6. The hardest part about mornings are: getting going when it's cloudy or dark.

7. My favorite medical TV show is: House, MD

8. A gadget I couldn’t live without is: er... RSI: my scooter. It carries my groceries so I don't have to. Yay! SAD: dawn simulator! And the hamster wheel at the gym. (aka cardio machines) Eye: glasses or contact lenses

9. The hardest part about nights are: insomnia. sometimes it's due to pain, sometimes over-stimulation, sometimes it is just mysteriously present and won't go away!

10. Each day I take 0-8 types of pills & vitamins. (No comments, please)

11. Regarding alternative treatments: I prefer them for my RSI and SAD. I believe that western medicine is much more effective for acute problems than chronic ones.

12. If I had to choose between an invisible illness or visible I would choose: WTF?

13. Regarding working and career: I've had to make major changes to my work habits. I've chosen a life path that works with my needs for part time work, flexible hours, and less time behind a desk.

14. People would be surprised to know: I dunno. You tell me. Maybe that I am disabled at all?

15. The hardest thing to accept about my new reality has been: There are some things I may never be able to heal enough to do. There are some accommodations I may have to make for myself for my whole life.

16. Something I never thought I could do with my illness that I did was: drive.

17. The commercials about my illness: I don't watch TV.

18. Something I really miss doing since I became disabled is: helping and pleasing others through things like massage that require a lot of my upper body. I sometimes miss crocheting, hand sewing, and other crafts that require small movements. I still draw and write even though it hurts sometimes.

19. It was really hard to have to give up: being able to use my hands without thinking about whether they'll respond or whether my actions will be painful.

20. A new hobby I have taken up since my diagnosis is: It's been 10 years or more. There have been many hobbies that have come and gone during that time.

21. If I could have one day of feeling normal again I would: Hehe. Do things I really enjoy doing that I can't do for long without pain now.

22. My illness has taught me: that my mind, body, and emotions are not separate. I must check in with all the parts of me to find out how to address difficulties. If I take care of my body first, I'll often be fine.

23. One thing people say that gets under my skin is: not really something people say.... I don't like it when people underestimate my abilities because of my RSI. My abilitiy level and pain vary from day to day, so someone's estimate based on past experience with me may not be accurate.

24. But I love it when people: help me while honoring my strength and independence. Allow me to make my own choice to do things that might hurt me sometimes.

25. My favorite motto, scripture, quote that gets me through tough times is: Please be patient. God isn't finished with me yet. (it's usually addressed to myself.)

26. When someone is diagnosed I’d like to tell them: Work with your body's needs. Battling my body's needs and my disabilities hurts me because I am fighting myself. Sometimes you will have to make compromises. With limited physical resources, I rarely regret choosing that which pleases me over that which I think I should do. For example, on a day when I have the energy or ability to either enjoy the company of someone I love or wash the dishes, I often choose the company of someone I love.

27. Something that has surprised me about living with an illness is: how clear it makes it that I cannot use my own ability to judge what someone else may be able to do. It's a good thing, too. That means we are strong in different ways, so we can help each other with the things that are difficult.

28. The nicest thing someone did for me when I wasn’t feeling well was: hold me, feed me, and take me for walks.

29. I’m involved with Invisible Illness Week because: awareness of other's experiences help me empathize and treat them as they wish to be treated.

30. The fact that you read this list makes me feel: like you care to learn about my experience.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com