Get UP!

How DOES someone with lupus, another autoimmune disease, or combinations of more than one autoimmune disease get back to their lives both physically and emotionally after being knocked down?  Please keep this foremost in mind:  the development of any significant and life-changing illness is not a choice.  No one asks to become ill, disabled, and less capable.  Take however much time and utilize whatever resources you need to work through and let go of the guilt and frustration you may feel about your new reality and do your best to look forward, always forward, to living your best with your remaining capabilities.  It may be helpful to take out a notebook, jot down your most pressing thoughts, fears, hopes, etc., and visit an experienced therapist. 

It is important to understand that from the moment your autoimmune disease significantly affects your life (i.e., hospitalization, long-term leave or permanent loss of employment, loss of income, loss of friends, loss of spouse or significant other, inability to live independently due to loss of physical agility, and more), your life has been permanently changed.  No different to the aftereffects the sufferer of a first, massive heart attack experiences, you will begin medical treatment to improve your physical condition and to best manage your symptoms.  You will undergo the emotional tangle of shock, denial, fear, sadness, and more as you come to understand that you must let go of old ways and adopt new ways if you want to move ahead in life and function as a physically and emotionally competent and happy person.  You will learn that your body is not the same body as before the onset of your illness and that you must make changes to your work life, activity levels, exercise levels, diet, and more.  You will struggle with your emotions as you try to come to terms with the changes that life has handed to you.  Your relationships will change and some will end.  You will no longer be able to enjoy some of your favorite hobbies. 

But remember, you still do have a life!  It may no longer be in synch with your old hopes and dreams but no one gets a guarantee in life.  The important point to remember is that you do still have a life; you are one of the fortunate people whose sudden onset of a potentially lethal illness has instead morphed into a chronic, life-long illness which you must learn to accept.  Given the choices between death and life, I choose life!

Don’t get me wrong here, I’m no Pollyanna.  I lived with autoimmune problems (see previous posts) for more than 20 years before being diagnosed and receiving effective treatment.  My date with destiny was in 2001 when my immune system went completely crazy and I became desperately ill.  I was asked to retire from my job (after being harassed for more than a year as a slacker for my continuous health problems), lost my income until finally being awarded a disability retirement which I had to take legal action to obtain, lost my health insurance; many of my friends disappeared from my life, and my religious community asked me to resign from my volunteer duties which I did and then heard not a word from them again.  I had to give up every single beloved hobby:  piano playing, sewing and quilting, gardening, and more.  My marriage became chaotic.  Family members accused me of being a hypochondriac and stopped speaking to me. 

The medications I was given to slow the autoimmune disease from becoming lethal caused me to gain 60 pounds over just a few months, I could no longer walk across a room let alone exercise, half my hair fell out, 5 molars cracked and needed caps because I would grind them in my sleep from the constant pain.  I haven’t slept through an entire night since 2001, again due to constant pain.  I was effectively bedridden for a full year but for the first 3 full years I slept in a recliner because sleeping on a mattress resulted in an increase in pain.  At least by sleeping in a recliner I would remain motionless and the pain would not be aggravated.  I developed restless leg syndrome, Sjogren’s syndrome, Raynaud’s syndrome, major depression, narcolepsy, high blood pressure, and more.  I struggle daily with skin rashes, pain, headaches, ringing in the ears, arthritis, debilitating muscle pain, and more.

At one point I begged to die.  I was severely depressed, in extreme pain, and was ready to stop fighting to live.  But my deep personal faith and love for my remaining family and friends helped me to believe that some type of better future might be possible.  So I began physical therapy to get up and move, and then walk again.  I began counseling to understand the emotional toll this awful life experience was taking on me and others, and slowly, slowly began to build a new life.  I redefined ‘success’ away from career, volunteerism, and high achievement to being able to focus on one day at a time, working hard to keep a positive outlook no matter what, and watching to see what each new day would bring. 

I no longer play the piano . . . but I have learned how to sign on to and listen to Pandora on the computer.  I no longer garden . . . but I do sit in the shady areas of our yards and watch the birds fly about in the sunny areas of our yards.  I can sew again but for only a few minutes at a time but I’ll take it!  I can quilt again but only on days when my pain, stiffness, and headaches are minimal.  I rarely leave the house due to very low energy levels, pain, etc., but have learned to thoroughly enjoy classic movies on cable TV, all the good books I’ve always wanted to read, learning to make new recipes for meals, completing my family history and family tree on the computer, and now blogging on this blog!  I have also found an online religious community of members who have lifestyles similar to mine.  I volunteer by designing, sewing and quilting small quilts for babies and other people in need.  I spoil my pets, talk with my remaining friends by phone, and crack jokes about the ‘advantages’ of having an autoimmune disease such as:

When my husband leaves for work in the morning the automatic thermostat goes down to 66 degrees because I always have low fever – hey, lower fuel bills!

I hardly leave my home, making my ‘carbon footprint’ is so small as to make up for the use of several SUV’s by our neighbors!

I have adopted 3 otherwise non-adoptable dogs who required an at-home new owner in order to deal with and train away their ‘bad’ behaviors and/or deal with their illnesses

I personally keep our local FedEx, UPS, USPS, and other delivery people employed as I shop online for groceries and everything else and have it delivered to my doorstep (I hold the record for most deliveries of anyone in our neighborhood J

. . . And more!

Next edition:  Reality in Love