Chronic Illness  
 February 9, 2016

I am not Cancer, I am MS

I am taking off my Stupid Dumb Breast Cancer tiara to talk about something I hate admitting. I guess starting at the beginning in a condensed form is how it should be done. After being diagnosed with cancer all this other crap kept happening. Numbness all down my right side was just the start then my ear popped and I lost hearing all to be topped with my right eye feeling glassy and blurry. I went to an ENT who let me add tried to send me to an MRI with tissue expanders in, UMMMM really? They told me “You have TMJ – be a good patient and take your muscle relaxer. You are under stress.” No, a sorry lady that was rude, and I do not feel right, it was not just TMJ. I kept falling down because my leg felt “dead,” I felt pins and needles in my body, and my hand was just not working. My migraines increased so it was time to see a neurologist. After many MRI’s and tests, he had a verdict. No, it was not TMJ and I listened as he called the ENT and told her just what he thought of her DX, I really liked this doctor. He explained that my optic nerve was depleting and that I had signs of Optic Neuritis. Come again? I just had cancer can I please not add to it. The reality is that this was a sign of early onset MS, multiple sclerosis. I really did not want to admit this, nor did my husband. But as I watch my body and feel the pain it is clear. I did my research and it seems that breast cancer in some brings MS and other autoimmune diseases to the surface, and in others who already had these it makes them dormant. So my love of high heels and stilettos is now given to my cousin. The pain in my feet is too much to bear in regular shoes let alone 6-inch beauties.

The thing with MS some days are ok, not pain-free but doable. Then there are the days that every step can bring tears to your eyes. That laying in bed you feel every pin, every needle, every muscle ache; sleeping becomes a dream. My back has started to feel a weakening of my spine which probably means that the lesions are now in my spine. Of course, this could be cancer who knows! I will be having an MRI to check but I put it off. Not just because they give me panic attacks, but the reality of the results is something I do not want to know. See my best friend from childhood has MS she was diagnosed a year before me so she is who I lean on-just not the right side as that is her bad side too.

I have found that eating right is as critical to my health as the medicine. Exercising when I can is part of my mental health. The issue here is that when you can not feel your feet yet it is painful to take steps, it makes it so hard. Sometimes the pain is so intense that I think others can see it. I was talking to my friend about how I keep feeling like my back is giving out and I almost fall. She told me to get a cane, I lovingly told her to F#$K Off, I said it in my sweetest voice. Truth is that will be my life soon, that and moving the laundry room upstairs. When and how did I become 89??

Gone are the days of 2-hour workouts between the lymphedema and the MS I get about 45 minutes a day if I am lucky. Gone are the superfly stilettos, they are not worth the pain. Gone are the long nights out, my nerves and body can not take it. I have never been one to say my illness has taught me something, but this has opened my eyes. When people complain of their controllable illness or a cold I say “but that can change.” They can not possibly understand what it is like to wake every day in pain knowing that it will not go away and that it will only get worse. Someday MS will debilitate me to the point that I am in a wheelchair, it could happen tomorrow or in 2 years or 10 years that is what sucks about MS you never know when you will flare up or be “ok.”

Living with a chronic illness brings on physical pain for sure but the mental pain is what I have been coping with lately. Not the “why me” but the “I cannot believe this is happening” and how do you explain this to others who laugh when you fall or say “yeah my feet cramp and fall asleep too just rub them.” You can never understand the pain that is unseen unless you have been there and I would never want anyone to feel this.

Life can change in an instance or over time. It does not matter but dealing with the change can be the challenge. There is no control over my illness and there is no way to know if it will progress faster than it is. But I am controlling how I react to this! I will not lie in bed and ache, I will push through each day pain or until the control is gone. And then I will take in that next change and make it my own. Is there anything else I can do? I mean at least it does not affect my tiara!