I have avoided writing this blog for two weeks because I am outright afraid of the topic.
My wife will never understand my illness. She hates the diet we are both now on, because we cannot afford for her to eat the way we used to while also funding my “keep MS at bay” diet. She will most likely never get into yoga and meditation as much as I am and will not want to accompany me to workshops or retreats. I will need to get used to practicing in the closet, alone. The argument we had two nights ago around me not wanting to go out and do the things I used to do, will probably not be the last of its kind. I don’t drink, can’t stand loud places and can’t seem to last staying up past 10:30. I cannot eat a single thing offered at a restaurant and somehow ordering plain fish or meat with vegetables just does not seem to do it for either of us. It is missing the element of adventure that I know she is missing. We are strapped for cash. She wants to spend money on what we used to- adventures- I want to spend it on medical treatments. Treatments that are not covered by insurance and cost $165 a pop, like Rolfing, cranial sacral therapy and magnesium IVs. We are both caught in longing for the past and fretting over the future.
In seeing how my being sick all of the time affects my wife, I attempt to do things that I know will make me feel worse. I take a sip of wine because she insists I’ll love it. I stay up late because she wants companionship. I eat out and deal with the stomachache and fatigue that lingers for days afterward. And then I secretly resent her. “She doesn’t understand me,” I tell myself. “She doesn’t even know what it feels like to have a headache for longer than an hour, let alone seventeen years.” And these sour thoughts make me feel worse and the worse I feel, the nastier I am to her.
My fear is in the admitting that I am not, nor will I ever be, the person I once was. We are told to not think of MS as who we have become. It is just something we have, not something that defines us. But it does define me. My existence has completely shifted towards management of my pain and symptoms. I spend a third of my day on it. That is more time dedicated to illness than any other single thing. Including the rest of my person. Including my wife. No wonder she misses me.
The challenge for me, and maybe for many of us, is to insist that I am worth the care and treatment I give to myself. So much so, that to get caught up in letting others, even our most beloved, sway us from what we know to be right for us is seen as a setback in self-care. It is my own insecurity about the amount of time and money I spend on me, and the fact that I am now on disability and only bringing in half of the income I used to, which causes me to feel shame. Shame that plays out in trying to placate my wife in what I imagine she desires. Truth be told, my wife doesn’t really care if I drink a glass of wine with her and she doesn’t care if we are out dancing at some noisy club or if we are dancing in our living room. She may be nostalgic for the days that I was a dancing queen on the floor for hours on end, her spying on me from the corner, but what she really wants is to share in joy with me.
I have a large supply of that. And love too.
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Important Safety Information
Before beginning treatment, you should discuss the potential benefits and risks associated with Rebif with your healthcare provider.
Rebif can cause serious side effects. Tell your healthcare provider right away if you have any of the symptoms listed below while taking Rebif.
Rebif will not cure your MS but may decrease the number of flare-ups of the disease and slow the occurrence of some of the physical disability that is common in people with MS.
Do not take Rebif if you are allergic to interferon beta, human albumin, or any of the ingredients in Rebif.
Before you take Rebif, tell your healthcare provider if you have or have had any of the following conditions:
Tell your healthcare provider about all medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.
The most common side effects of Rebif include:
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of Rebif. For more information, ask your healthcare provider or pharmacist.
Call your doctor for medical advice about side effects.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Rebif is used to treat relapsing forms of MS to decrease the frequency of relapses and delay the occurrence of some of the physical disability that is common in people with MS.