MS Flair – Riding Out the Storm

Two weeks ago I came down with the flu -think fever, vomiting and some diarrhea – fun times! – which led to a flair-up.  My first flair in four years….and by far, the worst one I have had in the ten years MS has been around.  It was terrible, awful and horrible.  I didn’t want to talk too or see anyone.  I wanted to disappear from my own life.  I curled up in a ball and just hoped that it would get better.  

The fact that my body has become so sensitive to temperatures (both hot and cold) it makes sense that as my body temperature rose to the 102 mark that I would feel like complete and utter shit.  It wasn’t at all surprising that my pain was off the charts – even my pain strains failed to provide relief.  My body was racked with muscle spasms and spasticity 24/7 and I wanted to just crawl out of my skin and no longer exist.

Changes in temperatures make the MS shit go haywire – so it was inevitable that it would be bad while my body tried to fight off the flu.  What I didn’t expect, what I wasn’t prepared for was the impact this all had on my mind.  My brain’s ability to function seemed to completely shut down.  I could NOT think clearly, I could NOT focus on anything, I had no ability to control how I felt or what I thought.  What made it so much worse, was that I could NOT write.  Writing has always been how I come to terms with whatever is happening.  It is how I process all the new and random shit that this disease seems to sling at me on a daily basis.  It has often been the one thing that keeps me sane and it was no longer an option.  That scared the shit out of me!

I have always been concerned about not allowing this disease destroy my physical well-being. I’ve always been driven to try and stay strong and to continue to be active.  But I have never thought about the possible long-term effects of this stupid illness on my mind.  

I talk about having MS fog – I have that EVERY day.  I talk about having memory issues – having trouble remembering things, issues with forgetting more and more things.  But the core of my mind, my voice and thoughts have always been there, behind the fog, beyond the forgetfulness.  Granted it often takes some work to get through the fog, but my mind has always still been intact and I could make sense of things and get things accomplished.  

Until last week when they weren’t there, the voice in my mind and my own thoughts were gone.   When I was in the midst of my flu/flair-up hell I could not make my mind work, no matter how hard I tried.  I could not rely on my brain to make even the smallest decision or to have any thoughts for that matter.  This scared me more than anything this disease has thrown at me so far.  Not knowing whether it was going to get better – if I was going to be able to return to the “normals” I have become accustomed too filled me with a greater sense of defeat than I have ever experienced.  

As I lay in bed, day after day, avoiding any and all human contact and my mind was failing me, I wasn’t able to remember all the other times that I have thought that this disease has gotten the best of me.  I didn’t remember that each and every time this disease has tried to take me down, I have not only survived but I have come back from each battle stronger and more determined.  Because my mind wasn’t functioning correctly, I didn’t have these memories to arm myself against this latest attack.  It wasn’t until the fever had passed and I had slept more days away than I care to admit that I began to remember all of this.  

I am still climbing out of this flair-up, and I am far from being back to “normal” BUT my mind is working well enough for me to be writing this – and that is a HUGE difference from the past few weeks!  Although I am not better YET, that one simple word, YET, wasn’t there just a few short days ago.  The fact that I know that now, the fact that I can think and believe it, that my mind is lucid enough again to be having thoughts of my own and that I can control and direct is a huge step.  I am frustrated that my words are not coming out as easily as they usually do, that I still struggle with trying to make my mind do what I want it to, but I wanted to put up a post – to explain my absence and begin to try and put into words all that I went through over the past few weeks.  It may not be my best, and it certainly isn’t complete BUT it is a start. 

I woke up last night and jotted this down:

 

So I am going to keep my eyes open for the sun and I look forward to being able to say “fuck you” to this disease once again!

 

**This is my personal blog and all opinions are my own.  I am not a doctor, nor do I play one here on my blog. The content here is for informational and entertainment purposes only and is not intended to replace the advice of medical professionals.  Be sure to contact your doctor before trying any new medications/vitamins/supplements, physical activities or therapies **

 

29 Replies to “MS Flair – Riding Out the Storm”

  1. Hey there – first of all – “FUMS.” Great post. You articulated so well what so many of us experience. Thank you for sharing your vulnerability and pain and confusion. This is my most hated symptom. And most pervasive. It is really hard to remember when you’re in the midst of a flare, that this too (hopefully) shall pass. Think I’ll write myself a note (now if I can just remember I wrote the note!) to remind myself to relax and just get through it. Thanks for posting this!! FUMS!!

    1. Hey Kathy! Thanks for taking the time to read and for the kind words. If you figure out a way to remember the notes you write let me know:). I have them all over the house but never remember to READ them:)

      Cheers!
      Meg

  2. This is so interesting! I wonder if everyone with MS who gets the flu has a similar experience. I had the flu in 2010, and that was the sickest I had ever been in my life. I remember getting depressed when I had the flu and wondering if I was going to die. I had a bad cough and got some OTC cough syrup that actually made me high. I couldn’t sleep. I had never been high before so that was pretty interesting! The high made me very jittery, but I also experienced more clarity of thought than I usually have. (I have cognitive problems because of MS.) I actually came up with some good ideas for our Queen Anne Victorian when I was high on cough syrup! I’m wondering if I could have clarity of thought with medical marijuana without the high. Recovering from the flu was a very slow process. My fatigue was worse and I just felt so weak. I remember I was shopping in Walmart one day and I just felt I could not stand up any longer. I had to find a place to sit down fast! That was something I hadn’t experienced before or since. I can still walk, although I’m not very graceful. I trip some and bump into things and people sometimes. I’ll have to read what you’ve written about medical marijuana. I wonder if MM helps with anxiety. I really need this stuff because getting a good night’s sleep without having to go to the bathroom sounds wonderful! I’ve heard MM does that. I wonder why I make such long and rambling comments!

    1. Hey Lucille! Thanks so much for taking the time to read and sharing your story. I would recommend you look into MMJ. It has helped me in many ways and I love that it seems to have opened up my creativity – haven’t felt it in years! I am more than happy to chat with you and explain what I have tried, what I have learned and what is working. Shoot me an email if you want to connect and I’ll send my phone number and or Skype:).

      Cheers!
      Meg

  3. Hi Meg, That sounds similar to my set back except my mind was functional as it ever is !!! Mine was more my body failing me and so scary!!! More than anything its the time it takes to recover Ive had the flu shot for the past 15 years and wouldnt wish flu on anyone.,,,,,,, you take care and wishing you a speedy recovery Mary x

  4. Oh Meg I feel your pain. I went on a girl week away and 1 friend came down w/flu on Saturday, I started feeling hinky Sunday, flew home Monday, sick Tuesday, couldn’t walk or get to bathroom Wednesday, I texted my daughter to come help Wed pm, she brought my sister Thursday and together they took me to ER (had to borrow wheelchair from doc) I ended up being their 1st case of flu A this year. IV fluids made me feel bit better but it’s a month later and I’m still on home health care and not sure I’ll be able to go back to work. This MonSter is no joke. But…like you getting used to my new “normal”. I hope you’re feeling better everyday, love your writing, thank you.

  5. Hi Meg, how completely scary for you 🙁 I have also had this when I’ve had the flu with my MS, my brain and body completely shut down so all I can do is lie in bed, not even being able to sit up 🙁 I hope that you start to feel 100% soon xx

  6. Meg
    Glad to hear you are on your way to feeling better. I must tell you that your blog is amazing. You put this MS into words that is something that I find difficult to do. You are able to describe exactly how hideous this disease can be.
    I was diagnosed with Transverse Myleitis in 2001, MS in 2011. Not a day goes by that is symptom free. The fear of loosing the ability to think and function is a constant reminder.
    Continue on, and try to stay well.
    Thank you so much
    Janice

    1. Hi Janice!

      Thanks so much for your kind words. For the longest time I wrote because it helped ME, but I am now learning the value of writing to help OTHERS! When I was in the thick of the flair up and unable to think straight, I did manage to think over and over again, I NEED to write this shit down – I NEED to put it out there because I KNOW that there are others that have lived through similar things and there is such power in knowing you aren’t alone!

      Cheers!
      Meg

  7. Sorry about your flair, they suck! Im happy you’re doing better. Im at my 10 yr mark with the MonSter and am in another flair that came after a case of Broncitus. I have never had a flu shot either, was just asked this week if I wanted one,’ Nope, I don’t do those.’ I said..hope Im not jinxing myself, ha! I admire folks that can write well, glad your back at it. Wishing you all good stuff.;- )

  8. Know how you feel. Had not had a relapse for 10 yrs then wham,bam, thank you ma’am. Didn’t know if I’d ever walk again. Very frightening. It will be 1yr next week relapse free again, believe me it will get better as evident by your ability to write again. It does take time and determination. Just keep looking at the sun.🌞🙏🌞

  9. How absolutely terrifying. I fear losing my brain. I am getting older so forgetting things is not odd. I just don’t know and am glad when my friends also forget. Slowly, what ai love is being taken away, I, too have always written. My Dad was a writer, I have pretty much lost my handwriting. I miss the feeling of ink on paper. Typing getting so slow. I miss my clatter.

    1. 🙂 One of the “perks” I have found with using cannabis is a return to my love of actually WRITING (as opposed to typing) and drawing. Both were things I thought had gone away because of the MS – but often now find myself waking in middle of the night to write in my journal or just doodle. I haven’t done that for YEARS and loving it – when I can REMEMBER to love it:)

  10. I’m so sorry you had a flair up! They suck. I haven’t had one in 14 years (knock on wood), but mine always come after a flu shot (which is why I can’t get them anymore…). I hope you get better quickly!

    1. Hi Megan!
      Thanks so much for your kind words. I have never had a flu shot – and haven’t had the flu in 15+ years – so I guess I was kinda “due” for it:)

      Cheers!
      Meg

would LOVE to know what you think...