If Only I Could 'Clear Some MS Out'
I have found that I don't like 'stuff'. To clarify, I mean the accumulation of stuff that gathers in corners and rooms in my house. I refer to it as clutter. Whether it's books or magazines, knickknacks, furniture, or perhaps old mail that has accumulated over time, no thank you. I just want it all cleared out and gone for my peace of mind.
Clearing out the clutter
I think about why I dislike clutter. Amidst the clutter, I don't know if a random insect is scurrying around, finding a hiding place to avoid a dose of Raid or being shooed out of the house - which makes me uneasy. Clutter agitates me and makes me anxious. It leaves me feeling annoyed, frustrated, and stressed. Without clutter, I feel like my clutter-free environment - free, light, clear, and stress free. I just want it cleared out.
And it can happen. I can control it - with assistance of course. I get friends or family members to go through and pack stuff up and it can get thrown or hauled away, or arranged to be picked up. Like of late, when my Daddy and uncle came with his trailer and they did a huge pack up and haul away for me. However it's done, the stuff is gone. It's cleared out and I'm clutter free and feeling great.
The stuff we can't get rid of
But...some accumulated stuff can't be thrown or hauled away or arranged to be picked up. I can't get rid of it no matter the anxiety, stress, or frustration it may cause. With my MS diagnosis 16 years ago (July 13, 2007), I slowly began to accumulate 'stuff' known as symptoms.
My MS symptoms over time
Some initial examples were issues with my balance. I attributed it to...well, I didn't know, though I knew it was abnormal. After a few tests, I was diagnosed with possible benign positional vertigo and sent to physical therapy. Then I noticed foot (and sometimes finger tip) numbness and tingling. I remember walking, pushing my daughter in her stroller at a festival, and wondering why one of my feet felt cool. I looked down and realized I had walked out of my sandal a few steps back and hadn't even felt it!
And then there were times I would feel perfectly fine and suddenly have the intense urge to urinate immediately. I didn't realize incontinence was now a part of my life and the culprit of me encountering some really awkward situations. I recall waking up one morning to my vision so blurred I could barely make out colors. I was extremely frightened. My vision eventually returned, until the next time. That was optic neuritis added to my 'stuff'. And there were times my legs would ache terribly and seriously feel as though they weighed 500 pounds each. That was leg fatigue.
Living with accumulation
And like clutter does over time, accumulation began...accumulation of symptoms. Shortly after those initial symptoms, came overall intermittent fatigue, spasticity, tremors, fatigue, arm pain, sensory issues, limited then barely any fine and gross motor abilities, seizures, and more. As the years have passed, just a whole lot of stuff.
Having MS agitates me - it's one beast of a disease. Its intrusiveness and unpredictability can make me feel anxious. The disease and all of the 'stuff' it brings, perpetuates feelings of annoyance, frustration, and stress - just like living in a cluttered environment. Yet, unlike physical clutter, I can't just get rid of it. Aarghhh!
Managing the stuff that's here to stay
The 'stuff' is here and not leaving. I can't control it like actual clutter, but I can at least try to manage it the best that I can. I'll continue my disease modifying treatment (DMT), Gilenya, in hopes of slowing the progression. I can continue my symptom management medicines such as, Amantadine for fatigue, Oxybutnin for incontinence, Baclofen for spasticity, and Keppra for seizures. And there's my occupational and physical therapies to keep moving the best I can, avoid atrophy, and maintain some of my muscle strength.
But...in my heart of hearts, what I would really love to do, but cannot, is to call my Daddy to come to the rescue with my uncle and his trusty trailer in tow, to clear this MS stuff out of here. To haul it far, far away so I can live a MS free life. Free of its stuff.
Editor’s Note: We are extremely saddened to say that on December 2nd, 2024, Dianne Scott passed away. Dianne’s advocacy efforts and writing continue to reach many. She will be deeply missed.
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