The True Cost of Being Chronically Ill…Part II

As working, tax paying Americans, money is withdrawn from our paychecks, each and every time we are paid. We are told, that a portion of this money goes into Medicare. That we’d receive the benefit when we turned 65 years old…That in ‘old age’ we’d have some help with our medical needs after retirement…Medicare was never intended to be our sole coverage, it was meant to assist us. I grew up believing this. My career was cut short by acquiring a Vestibular Disorder. I made good money when I worked, really good money. If you earn no money, nothing is put into the funds. When I went on Disability, Medicare gets used prematurely. By the time Mike and I are able to retire, there will likely be nothing left of our Medicare System. The long, sticky fingers of our government have been slowly, but surely picking it clean for decades. It’s the ‘bait and switch’ game the government plays with our money. Funds are ‘borrowed’ from one ‘system’ and used for another failing ‘system’. I suppose this falls into the ‘life is hard’ or ‘don’t believe everything you hear’ or ‘yes, life sucks’ categories.

One thing I do know to be 100% true, not ONE person that has a chronic illness wantedto be sick every day, for the rest of their lives! Who would? Why would they? I will admit, that before becoming a chronically ill person, I did kind of enjoy the attention given to me if I had the flu or something. It gets ‘old’ being ill…quickly. As a young mother, I so rarely got sick it’s hard for me to believe what I’ve become. This was the ‘me’ before stress went from being a great motivator to something I could not cope with. Mike was in two near-fatal car accidents. We almost lost Sarah at 7 months due to a HUGE misdiagnosis and our Church abandoned us. All of this happening within a matter of just 3 years.

This near endless stress from this short time period obviously took its toll on me with my first chronic conditions, PTSD (Post Traumatic Stress Disorder) with insomnia. Most of us associate this with war veterans, but it can happen after any traumatic event. That was quickly followed by diagnoses of Depression and Anxiety Disorder. A 2 1/2 years separation from Mike and our children while I earned my OTA Degree and another chronic illness, IBS (Irritable Bowel Syndrome). I was diagnosed with Thyroid Cancer the final months of school and had surgery only 3 days after sitting for my Board Exam. No stress there! I would be diagnosed with Reflux and Ulcerative Colitis a few years later. My career as a COTA was a relatively short 12 years before my Vestibular and Fibromyalgia diagnoses. That was enough for me, more than enough and I never asked for any of it!

For me, the true cost of being chronically ill is not only financial but it’s been the loss of self. With each diagnosis, I lost a little piece of me. I’ve had to morph myself many times (wife, mother, caregiver, Therapist, back to the wife, now Disabled wife, and grandma). How do I do this, yet once again? Take a breath. Break down tasks. Listen to my body.

• I begin by not allowing my illnesses define me. Of course, this is difficult on one of ‘those’ days but I try my best because I am so much more than a bunch of disorders.   You are too, never forget this!

• I’ve  accepted that there will always be people who doubt me (remember, all are invisible disorders). These individuals are either uninformed or creepy people who make ‘fun’ of me or my situation. The uninformed are easy, I educate them. The creeps? Ignore them when possible, engaging with a person on that level will get you nowhere.  I have engaged with that caliber of person…I accomplished nothing more than embarrassing myself.

• I have a number of books that are motivational, spiritual, and medical. I love reading books, real books. Education is power!
• Journaling is so therapeutic. This is a way to ‘say’ whatever I want to whoever without ramifications. Only my eyes will see it.
• I continue with my VRT throughout my day, as I’ve adopted a mindful approach to almost everything I do. A daily goal? Moving more without falling and I’m doing well with that!
• I try to do something every day that I love and can still do, art! It can be a cool outlet for those living with Vestibular Disorders. In doing the drawing or painting movements, you are doing VRT and don’t even know it. You need to track the lines drawn/painted as they’re made to complete a picture. Have fun with this! Draw in all the planes, horizontal, diagonal, verticle or circular lines. Make your own pattern to use in your VRT or hang it on your wall!

                                                                  vestibular.org