“Is this the real life? Is this just fantasy?”
The other night I watched the movie “Bohemian Rhapsody,” and seeing the portrayal of the late Queen frontman Freddie Mercury as he faced an HIV/AIDS diagnosis brought my own MS diagnosis into clearer focus.
For the past couple weeks, both of my hands have felt weird. The skin on my hands has been tight, tingly, and a little numb, while the rest of my body has felt numb on the surface of the skin.
As I waited for the nurse to call me with advice from my neurologist, I kept going around in circles for days wondering, “Am I having a relapse, or is this an exacerbation? Is my MS getting worse?”
I had no answers, just a head full of panic.
At long last, a call from my nurse broke the silence. She said it was just a blip after all that stress. A blip!
People often don’t talk about the mental ramifications of when something goes temporarily wrong.
Emotionally, I had felt wiped out while waiting for this call. I had struggled to string a sentence together, and my legs had felt wobbly and paralyzed from fear.
“Just focus on tomorrow; things will be better,” I kept hearing from my husband. All I could think was, “But what could happen tomorrow? Is this just the start of something terrible?” The nurse couldn’t tell me.
People often avoid speaking up about the dark days, but I want you to know that we all have them. The depression from the uncertainty, the endless questions — we all have them, right?
You may be the most positive person, but when something comes along and throws you off course, you may start constantly thinking about what could happen.
Things can change rapidly with MS. Is there a way to just accept these changes and move on? No. It’s not a “normal” occurrence. How can you have unexplainable symptoms that feel so unnatural and be OK?
We must constantly adapt. What can and can’t this version of my body do? What’s my new limit?
There’s not a lot we can do to avoid MS episodes. I find it hard to lean on others in these times because they don’t understand. They may suggest I sleep, take paracetamol (acetaminophen), or take some time off because they think it will make me better. In reality, whether I rest or not likely will make no difference. It only frustrates me.
It is up to me to get myself out of this funk.
I find that keeping busy is the best distraction. So, I decided to give myself a good pep talk.
“OK, Jess, what’s going right?” “What is still working?” “What can I still feel?” “What’s actually changed?”
When we feel that all hope is lost, we must express gratitude for the things we still have.
This episode completely freaked me out because I hadn’t had an episode like it for about eight years. However, it gave me the wake-up call I needed.
I’m left asking, “How can I feel more prepared for the inevitable ‘next time?’”
How do you manage the spontaneity of your illness? Please share your thoughts in the comments below.
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, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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