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How an MS Episode Gave Me Mental Strength and Clarity

How an MS Episode Gave Me Mental Strength and Clarity
4.8
(32)

“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!

Utter relief.

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.

During those uncertain days, I did extra journaling as I tried to make sense of things. Nothing eased my anxiety

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.

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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, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Jessie is the host of the DISabled to ENabled podcast and author of the “ENabled Warriors Symptom Tracker” book. She’s also an illustrator working with MS charities and magazines worldwide. She’s interviewed paralympians, radio DJs, chronic illness bloggers, marathon runners, and more. Jessie, based in the U.K., was diagnosed with MS at 22 years old and was told by a doctor to “go home and Google it” to find out what MS was for herself. Her own experience of being newly diagnosed so young was negative and scary, so she fills the internet with positivity for other anxious MS Googlers to stumble upon.
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Jessie is the host of the DISabled to ENabled podcast and author of the “ENabled Warriors Symptom Tracker” book. She’s also an illustrator working with MS charities and magazines worldwide. She’s interviewed paralympians, radio DJs, chronic illness bloggers, marathon runners, and more. Jessie, based in the U.K., was diagnosed with MS at 22 years old and was told by a doctor to “go home and Google it” to find out what MS was for herself. Her own experience of being newly diagnosed so young was negative and scary, so she fills the internet with positivity for other anxious MS Googlers to stumble upon.

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11 comments

  1. Nathalie says:

    Thank you for this positive message. It feels good to read that I am not the only one experiencing low moral. I like the way you are turning it into positive rather than focusing on what we can’t do anymore

  2. Ina says:

    🙏 Thank you for sharing and for your positive tips! Very comforting and so good to be reminded that I’m not alone with these feelings and constant worries! Take care!

  3. David Leavy says:

    Thanks you for sharing your experience Jessie. I also find that I panic whenever there is something “new” happen and I start to focus on what I struggle with, which then becomes all encompassing. Like you I find the best way to break the cycle is to get busy with things I can do and enjoy doing.

  4. Abbey Turner-Watson says:

    Hello Jess,
    I DO understand your pain, MS is cruel and unpredictable. Easy to say, hard to do: All any of us MSers can do is to be POSITIVE about our lives and the situation we have been given.
    For me, positivity is the enemy of MS and enjoy throwing THAT at it.

    RE: Your present tate.
    My first thought was that you might want to try taking a high dose (80,000iu) of d3 Vitamin D every day for a few weeks, to then drop to 1 or 2,000 daily. This advice was given to me by my Neurologist and had helped massively with my 18 month period of umbness/pins+needles – and cheered me up because I (positively) told myself that ‘normal’ people take vitamins too!!

    With very best wishes to YOU,
    Be strong, be happy,
    Love, Abbey

  5. Abbey Turner-Watson says:

    Sorry Jess,
    To correct the annoying predictive text:
    Your present tate should have read
    Your present state.

    Be well, be happy.

    Lpve, Abbey xx

  6. Valerie says:

    Hello!
    Thank you for sharing this. I fully agree that ” whether I rest or not likely will make no difference. It only frustrates me”. I also get terribly upset when unpleasant things happen to my body. So I prefer to do at least something (in the most devastating cases-at least turn on the TV). I also get numbness in my skin. This gradually spreads all over my body and spoils my mood.
    And, sorry, that’s not the point. Overdoses of vitamin D are a very unpleasant thing! Be careful with this, please!

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