Choosing to Infuse Myself with Optimism
Living with an incurable, progressive disease can be physically and emotionally exhausting. Iāve always been a girl who thrives on proof and assurances, and there seem to be little of either where MS is concerned. Itās taken me quite a while to settle into the awkward instability that is ambiguity, and I still sometimes find myself yearning for certainty.
I yearn for that certainty today.
Yesterday I had my infusion ofĀ RituxanĀ amidst progression of my disease, and tomorrow I see my neurologist to discuss my course of treatment among other things. My mind is murky, not only from the infusion, but from the inevitable questions that arise prior to such an important discussion.
From my treatment course, to managing the ever-changing symptoms. My appointments sometimes closely resemble the movie, Groundhog Day:Ā The same exam, the same questions and the same answers. I probably could predict our conversation with 90 percent accuracy, not because my doctor isnāt amazing, but because while so much changes, so much more remains the same. Itās the nature of the beast.
So, how do we tame the beast?
We donāt. Therein lays the greatest juxtaposition ā embracing ambiguity and coming to accept it as a constant. In an effort to cope with and thrive while living with MS, I have had to force myself to be comfortable in flux. This is definitely not my strong suit when dealing with the fluidity that is MS, and most things pertaining to it.
So, while the Rituxan might not be stopping every bit of my progression, it very well might be slowing it down. Certainly my MRIs are an indicator, but they only say so much. So, I choose to believe treatment is helping. Call it naĆÆvetĆ© or ignorance, but I call it faith. I call it hope. I call it believing in the impalpable and making that energy work to my advantage.
If thereās one thing I have learned about living with MS, it is that our mindset matters. In the absence of empirical evidence to show us otherwise, why not fill the space with good? Why not fill that space with optimism?
I could seriously use that kind of infusion right now, and only I can give it to myself.
On days like today when my head is pounding, my eyes are blurry and I can barely remember my own phone number, I cling to that goodness. I cling to the hope and belief that the goodness will prevail. The flux is so powerful I find the more I resist, the more it persists. So I, too, become fluid. I become fluid in my thoughts, fluid in my being and fluid in the knowledge that for today, this is how things are.
I infuse myself with optimism, with hope and with faith that I am not on this journey alone. I infuse myself with assuredness that even amidst this ever-morphing disease, today I am okay.
Tomorrow may be a different story, but Iāll find that out tomorrow.
***
Note:Ā Multiple Sclerosis News TodayĀ is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those ofĀ Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Comments
Pat Irwin
Thanks, I needed that!!
Jennifer (Jenn) Powell
You're welcome, I'm grateful you found it helpful.
Anita Lunde
Would you be willing to talk with my 40 year old daughter who is in a skilled nursing facility in San Antonio TX. She has PPMS and only limited use of left arm. It would be so good to find someone who can really relate to all her issues - blurry vision, nerve pain, spacisity, depression, fatigue, etc. I would think the MS society would have a support group but I have been unable to find someone in her similar situation. Or if you know of someone or resource in San Antonio. I am happy to provide more information.
Jenn Powell
Hi Anita,
I would be happy to talk with your daughter, please have her email me. As well I have reached out to the MS Society to get you the nearest location for both of you to find resources.
I look forward to hearing from her and please tell her I'm sending my best.
Jenn
Debbie Bright
Your article resonated with me. Great timing - I've been down in the dumps (and it's time for another infusion).
Thanks, Debbie
Amanda Jardine
Thanks for your optimism Jenn! I was recently diagnosed with RRMS and some days it's hard to see the good. I know that positive thinking is the basis for all good things so every day when I take my super expensive pills, I think of how grateful I am not only for health coverage but for this treatment that will help slow the progression of my disease.
Keep inspiring!
Amanda
Susan WIttenberg
I could seriously use that kind of infusion right now, and only I can give it to myself.
WOW!! I can SO relate!!
Yes, thanks SO very much for your optimism!! I posted this the day I was infused and a few months later Im still doing great!! Looking forward to my next injection of HOPE!!
Thank GOD for this amazing option!!