Life changed the day I started to go blind in my left eye. After a quick visit to an ophthalmologist, I was referred to a neurologist with a diagnosis of optic neuritis. I made the mistake of searching the Internet for more information and saw two words that froze my heart.
According to the Mayo Clinic, optic neuritis sufferers have a 50-50 chance of developing multiple sclerosis. I freaked out about this possibility until my neurologist told me some of the other possible causes, including lymphoma or a tumor. My husband and I were actually wishing for an MS diagnosis so that we wouldn’t have to deal with the possibility of a terminal condition. MS is chronic, but it’s not fatal.
MRIs are powerful diagnostic tools for monitoring the progression of MS. The first time tried to get an MRI, I found out I’m claustrophobic. I had to be pulled out of the tube as I sobbed. But when I finally got in there, my doctor could confirm that I had MS.
My response? I was ticked. I had just lost a bunch of weight and was exercising regularly, and I get diagnosed with a chronic autoimmune disorder? I got angry at my remitting-repulsive MS (a wonderful slip of the tongue from my husband) and had to figure out the next steps.
Life with MS
I quickly learned that not letting MS get in the way was easier said than done. I live in the sunny south, and heat intolerance is a common complaint for those of us with MS. Spending too much time out in the heat and humidity of a North Carolina summer would drain me, and I’d have to spend time in an air-conditioned room drinking cold water or napping to get recharged.
Ooh, baby baby
After I was diagnosed, another patient told me that if was thinking of having a baby to go ahead and do it. Research has shown that pregnant women with MS are less likely to have exacerbations during pregnancy, and my two pregnancies were easy and MS-symptom free.
I had a big question about my kids – is there a genetic risk that would increase their likelihood of developing MS? Researchers estimate the risk to be about 3 percent. I was willing to take those odds.
Most of the disease-modifying MS drugs involve needles. The worst part was realizing that I would be voluntarily injecting needles into my own body on a regular basis. On the plus side, I’m a lot more appreciative of professionals drawing blood and giving me shots, because they’re much better at it than I am.
The biggest lesson I had to learn was not to become so overwhelmed with my MS diagnosis that I neglect the rest of my health. It took a life-threatening blood clot in my leg to remind me that just because I have MS doesn’t mean I’m off the hook for the rest of my healthcare.
HELP is not a four-letter word
Swallowing pride and asking for help is not easy. It is easier than falling and breaking my nose in the bathroom, or making a mess by dropping things. Better to prevent disaster than need a cleanup crew.
I’ve learned that getting a cane doesn’t have to make me look like an invalid. When we realized that a cane would help me with my mobility issues, I asked my husband to get me a “cool cane” for my birthday. He sheepishly handed me a box and reminded me that I had asked for this, since he feared being in trouble for giving me a medical device for a present. When I saw the multicolored, collapsible cane, I grinned. Instead of being a sterile reminder that I have an illness, I have a colorful conversation starter.
So, 11 Years Later…
I’ve had to make some compromises for my MS. I’m not the chaperone on field trips, I’m the mom in the audience for school plays. I don’t run around with the kids, but I’m stiff competition on the Wii. I still wake up each morning wondering whether I’ll have the energy to cook dinner or whether we’re ordering pizza again. But while I’ve had to make some changes in how I approach each day, I’m living my life with MS, instead of letting the disease define me.