Autoimmune Disease Support Group

Our  Mascots are Marlie and Wilson!  

How Did You Cope? Part II

In my last entry, I shared how my illness got so bad, and how I started making changes that helped me to get better.  I covered sleep in the previous entry.

Here are the things I've stumbled upon that have helped me get better:  Joy, appreciation (for all things and any progress), helping others, taking a few extra steps each day, meditation, creativity, professional therapy, and getting a little bit of sun daily.

Joy is probably the first thing that we give up when we become very ill.  There is no dancing, no singing, no walking the mall shopping for the cutest shoes ever... 

One thing that brings me huge joy is singing! Incorporating 15 minutes of singing in the shower began to lift my spirits in a way I could not have predicted!

I also began to give Thanks and appreciation (to my God, The Universe) for every small thing:  for waking up, for being able to walk by myself to the bathroom, to have the energy to shower, to be able to walk to the end of the road, for sleeping just a little bit less each week, which translated into more awake hours of the day!, etc...

In one group meeting we talked about Gratitude Journals and everyone got a journal to write in.  Just coming up with 5 things I'm thankful for each day and listing them on a page was a catalyst for me to become a much more positive up-beat person!  I found that once I got to 5, the ideas would beging to come fast and steady!  6, 7 8 things that I was grateful for that day.  Coffee, the silly conversation I had on the phone with a great friend... not having a fever that day...  the big and the small.

Helping Others:  Starting this support group also helped me in ways I could not have anticipated.  Obviously being around other people who are also severaly chronically ill made me feel less alone.  But what I had not been able to foresee, was the impact that helping other people would have on my own well being! 

Taking an initial call from someone interested in joining our group can be so uplifting!  The person on the other end of the phone is reaching out and might even be feeling kind of hopeless.  To make that connection with another human being, to say "yes, I get it and I've been there".  Feeling the other person's energy through the phone..  I can't describe it! 

I would say that helping all of you, even if you have never come to a meeting.  Even if we have never even spoken on the phone...  just knowing that you might have stumbled upon this blog and read what I've written...  it feeds the soul!  And I find the more I feed my soul, the more my body bounces back!

Another discovery I've made about coping is that prior to becoming ill, I was so Type A personality that I never asked for help...  I didn't even WANT help!  I felt that whatever it was, I could do it best!  I know!  Crazy right?  What I've now realized is that when we allow others to help us, it feels good to THEM!  So, like I feel great taking a new member phone call, I can give someone else (my family or a friend) the same feeling by letting them help me! 

I've been able to let go of having to do everything.  I am no longer an island --  Doing things all by myself.  Now, I am part of a family.  I am part of a group of friends.  And I am no longer trying to do it all at my own body's expense.  If I am not doing great, or if I have a lot going on in a particular week, I give myself permission to not get it all done! OR, to ask for help to get things done, either way,  It's OK now! 

Walking has been very important for me.  It's something that I had to do in BABY STEPS!  And I mean that literally!  When I was at my worst, my physical stamina took a nose dive!  I could not walk one house away without feeling as if I were about ready to pass out!  Slowly, veeeery slowly, I took a few more steps when I went on my daily dog walk.  Now I am back to being able to go around the block!  And again, each time I do it, I celebrate in my head and grin like an idiot!  I find joy in the sun on my face, the breeze in my hair, and most importantly, the muscles in my legs that carry me and my heart and lungs which work in tandem well enough that I no longer feel faint most of the time! 

I find meditation is extremely important (although I don't make the time for it daily that I should).  My personal belief is that I have a soul, and that my soul is a piece of God (the Universe) and that if I meditate, i can tap into that piece of The Devine (which is already perfect) and since God is all powerful (and all health) the time I spend opening that channel where I can access that power, I am accessing the piece of me that is already in perfect health...  deep I know, and if we don't share this philosopohy, that is ok!  I'm just sharing what works for me.

I also found that being creative feeds some part of me.  Whether it is by writing (a blog ;) or journal entry) or by doing some craft (like my decorated magnets, or making home made body scrub).  Whatever it is that gives me a chance to make something pretty, or yummy (cooking), or coloring in a coloring book...  these things are imortant! 

I also want to point out that I got myself some one-on-one counseling by a professional therapist.  I needed to heal myself from a boundary violation that occurred when I was very young.  I now realize that all of those years that I didn't address that allowed it to fester.  And I really believe that as long as there was a wounded, festering piece of my soul, my body would never have been able to begin to heal.

An advantage of taking care of my "child self", has been that I have learned coping skills and strategies for handling people in my life that were trampling on my personal boundaries in current day!  And each time I stand up for my self now, I am taking care of myself! 

Some days, even if i can't do a real walk, I make sure I get outside even just to sit.  Even if it's not fully sunny.  Just getting some fresh air and some rays seems to help my mood emensely.  Even if it's only for 15 minutes it really helps me!

When you think back to early civilizations, how did they live?  They were very physically active, they were outdoors most of the time, and in their down time they made things or had celebrations where they sang and danced! 

Obviously we all need to have a great medical team and a decent treatment plan but these are the things that I could do for myself that made a real difference in the quality of my life with an autoimmune disease and chronic pain.

I wish you peace, love, joy and health!