Faith Amid Funkiness When SPMS Brings the Blues
I am in a funk. It took a lot of mental volleying to admit this. I am preconditioned to synonymize feeling down with weakness. This is simply untrue. I am strong. But I am also having a difficult time managing my disease. Both can be true.
In my transparency, I hope others will be transparent, too.
While I know this moment is transient, it still hurts. The increase in fatigue and physiological pain tests every part of my being. I witness my body changing as a result of new and active lesions. My once strong voice is often hoarse or wavering as a result of weakness and spasticity. I have seen my dysarthria (more specifically dysphonia) become more pronounced in this past year.
I remind myself that I can still talk. I remind myself that I can still walk. Once again, gratitude courses through my veins. For this moment, I am OK.
Speaking of walking, Walk MS 2019 is in April. I have participated in every Walk MS since my diagnosis and have personally raised over $10,000 for the National MS Society. I am sad that I cannot walk the course this year. I force myself to focus on what I can do. I can fundraise and help those without the means to manage their disease. I must meet each roadblock with a detour. The road less traveled is intriguing, yet the road one creates is full of untapped possibilities.
I have worked hard to train my mind. Cognitive tools continue to guide me through difficult moments. Guided imagery affords me the ability to attract positivity. I use the same technique to successfully lower my blood pressure. This is just one of many tools in my expansive tool kit.
Yet I am human. I cry. I mourn. I do the pity pot thing. I allow the wave of sadness, fear, anger, or loss to crash. I feel it, metabolize it, then let it go.
Then, I dry my tears, find acceptance for the day, and shift my perspective. I pray and ask God for guidance. I reach out to family and friends who continue to teach and inspire. I dig deep into myself. I tap into what I know to be true. I awaken the part of my soul my sadness overshadows.
I awaken myself. I open my eyes and see the shadow as it passes by. I feel the warmth of the light as it filters through. I own that light as my own, and as I do, I am enveloped with hope. Hope is kryptonite to my funk. I envision laser beams of hope breaking up globs of funk. And I smile.
I am back and I am shining my light.
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Note: Multiple Sclerosis News Today 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 of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Sonya
I am speechless, Jennifer. Simply speechless at how you have expressed MS suffering with such beauty and truth. I thank you because your words are lyrical and have spoken for me also.
Nick
Nice article and how true. I too fight the same fight and have done so for over 28 years now. If you ever think for one second how bad your life is, simply look around, watch the news or listen to the radio. There is always people in worst situation than you are.
And there is now light at the end of the tunnel, at least for my MS. I have been in a wheelchair for 4 years now and fingers crossed, my symptoms are steadily decreasing (11 months now - No not relapsing - remember I have lived with this for 28 years, my MS NEVER relapses!) Why because of this drug Ocrevus ™ (ocrelizumab) I was only able to transfer seat to seat, not stand and now I am able to walk behind my wheelchair for about 20 metres and getting better every day!! So there is always hope!
Leanne Broughton
I do enjoy reading your Silver Linings articles. Even before MS I would say to my children "there is always someone worse off than you, show kindness and empathy". That is still the case. Even with SPMS I feel my good fortunes. Though I can also find myself in frequent tears. I have a hard time expressing my feelings, fears etc. without emotional upset. Even after 20 years. But there is always a silver lining, just in a different mindset. Thank you for putting so many of my feelings into words that I could use when speaking to others.
Teresa Barr
Very well stateed- thank you for my vision of Krytonight!
Gwendolyn E Mugliston, PHD, DVM MSN
SPMS is not what I anticipated 19 years ago when I was 60 years old and running long distances and loving that so much. I thought RRMS was "it" in terms of progression. I had had it since I was 27. It was so slow and benign it didn't seem a problem...except the rare "once in a while". And there always seemed to be a work around my husband and I could figure out. Yet, here I am at 80 with SPMS I do dream of running trails with the occasional walk in wooded places with long distance views of tall mountains, sun and clouds scudding overhead. Clearly the dream is of another time and place.
I wonder if somewhere in that history some doc said anything about progressive MS. Truly I don't think so. Not until I was depressing with pain and finding myself so weak and uncoordinated I could not walk was a drug recommended, Ampyra. It actually started working within 3 hours of the first dose. Those small uncoordinated steps were the elixir of joy. And that was my first medical introduction to SPMS.
Many people discount that those of us with MS can actually optimize our lives. And we who are getting "quit old" are rarely asked how we have managed. Many of us do "manage" by various means including strict diet control and mind/spiritual controlling efforts. No, it is not always successful. We then beat our way around to another possible solution and another and another. Frustration is not unusual...but we can usually find another way to do or feel about something in a "better" way.
But I do know beyond a peradventure of a certainty, not all of us follow the same track or can manage similar trajectories. Our disease seems to be quite unique to each person. However, it is good to know how others manage...it should not be secret nor should it be considered a manipulation, a demeaning of others or a lie. It should be considered a gift, a 'pearl beyond price'. I think Jennifer gave us such a gift.
Gwenie
Hollie
Thankyou Jennifer for putting your words as i also feel.
Laura Miranda
Thank you- this is very helpful for
me.
Amanda Mandia
As always, I look forward to reading your articles. However, they are more than that for me. They are “inspirations”. Keep doing you.