Are You Petrified?

RA Guy Adventures of RA Guy 11 Comments

TabooLast year Rheumatoid Arthritis Guy – for the first time – listened to the Broadway cast recording of Taboo, the musical. This show originally premiered in London’s West End, and is based upon the story of singer Boy George. Taboo was later brought to New York City’s Broadway by comedian/talk show host Rosie O’Donnell.

Having grown up with the music of Culture Club and Boy George while I was in junior high, I immediately enjoyed this soundtrack. I still remember the time when I first heard Taboo – I was actually in bed listening to music, dealing with the symptoms of a flare that had clearly gone beyond the three weeks that my flares had typically lasted at the time.

As I moved through the final tracks on the album, one song stuck out and has stayed close to me ever since. That song was “Petrified,” sung by Raul Esparza. This song is hauntingly beautiful, and contains lyrics such as “When you’re alone, at night, do you run and hide?/Are you strong, inside, are you full of pride?/Or just petrified”.

And at that moment, I realized how overwhelmingly afraid I was of my rheumatoid arthritis. I was petrified. I listened to this song at least twenty times before falling asleep. I woke up the next morning with a new awareness, with a new understanding of the role that fear played in my life of chronic illness and all of its unknowns.

In the past few months, I have often gone back and listened to this song – whenever my level of fear grew. My goal was not to depress myself; instead it was to both confront and accept my fright. As I heard the song I would play with the lyrics in my mind, and come up with my own personal affirmation.

Yes, I am petrified. Yes, I am strong inside. No, I will not run and hide.

Last night, I found myself once again listening to “Petrified”, and repeating this mantra in my head.

You see, yesterday afternoon I experienced a sudden increase in pain in my hands and feet. Although I lived with this pain on a daily basis for almost half a year – up until three weeks ago – I have been fortunate enough to not experience any pain, since earlier this month.

For whatever reason, my pain was back – and I was petrified. So much so, that I could literally feel my world closing in on me. I sensed I was just minutes away from a major panic attack. All of the coping mechanisms that I have used to deal with these anxiety attacks in the past escaped me. Luckily, I remembered that I could call my psychologist, and that I exactly what I did.

Ten minutes later I was much more calm. I spent a couple of hours in the afternoon at my previously scheduled session of physical therapy (we’ve been working on strengthening treatments during the last few weeks in with all inflammation has been absent). I took a nap when I got home. I took an extra anti-inflammatory pill in the evening. As my day progressed, I did get much better – both emotionally and physically.

I have no idea if my pain will return today, or if it will get better or worse. I am a little nervous, but at least I recognize that I am scared. I guess this is somewhat normal. I  must admit though, that I am (once again) surprised at how strong this fear can grow and how quickly it can appear.

So, I will once again confront my fears. I will continue to remind myself that no matter what might happen, I will have the strength to get through it. I have done it before, and I can do it again. I will stay as positive as I possibly can.

But deep down inside, there still is a little bit of fear…and I hope it soon goes away.


Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 11

  1. Millicent

    Fear can be debilitating! I’m hoping for a pain-free, panic-free day for you. TGIF!

  2. corinne

    I felt this same fear as my knee started to get worse, just when you think you have over come the fear it jumps right back in when things turn bad! My fear was linked to the fact that I had my daughters 13th birthday party to organise and a holiday creeping up, with little mobilty you wander how these things will be enjoyable? Iv had my knee drained and injected with steriods only yesturday so feeling slightly more positive now thanks to the emergency intervention of the Rhemy nurse…life savers 🙂

  3. Cathy

    Pain, Pain, Go Away. Don’t Come Back Some Other Day!
    I am so sorry you had a rough day yesterday. Maybe there was a shift in the weather? I hope good things come to you today. Sending lots of healing thoughts your way.

  4. Lana

    I know that feeling oh too well! I got through that as well at least once a week, but then I remind myself why RA and Fibro haven’t done their worst to me, it is because I have a reason to get up every morning – my kids, and then I forget. But I get it, like anyone else, I get that feeling. I get scared too, mostly of the RA. I had a bad flare up yesterday and I was also dealing with brain fog – it comes and goes, as they say. I have good days and bad days.

    BTW – You are part of my Follow Friday post –

    Hope today is better. Have a great day!

  5. Sara

    oy. completely. once we start feeling better, i think that is the lurking fear behind every good day. stay strong.

  6. JG

    Thank you for talking about this. I think people that do not suffer from chronic illness might think the process of acceptance of your illness includes no longer being afraid of it. I’m afraid every day. It’s not just the mortality I fear, it’s what LIVING will be like; what will I miss because I can’t get out of bed? What if this treatment or that medicine doesn’t work? What if I completely lose my mind? And in addition to the actually possible my imagination runs wild: What if there is a tidal wave and I can’t climb onto my roof as fast as everyone else?

    Thanks for such an important post over something we try to pretend is trivial. Fear grows in the dark and withers in the light. Keeping it out in the open and talking about it is the best way to frighten it right back.

  7. Post
    RA Guy

    I think my lesson learned here is that no matter how prepared I think I might be, and how much I think I might have accepted my chronic illness, there is always going to be some amount of fear. The important thing, as JG says, it to not get stuck behind that fear; to bring it out of the dark and into the light.

    I am feeling much better at the moment, and if my afternoon brings some pain, I will just go back to doing what has helped me get through such moments in the past.

    Thanks everyone for your words and thoughts.

  8. Cathy

    Oh, I know that feeling. Your post, as always, hit the nail right on the head. I’ve been doing really, really well for all of July, and anytime there’s a little twinge, I am hit with fear that this is the end of this good patch. And as much as I try to remind myself that this is the nature of RA, I can’t seem to stop myself from leaping to thoughts of “maybe I’m going to be fine now” whenever I have a good patch, which just makes the flares harder to take when they return…

    I hope you’ll get through this rough time quickly, and get back to feeling great!

  9. Robin

    wow, i know exactly how that feels, i was actually just telling my sister the other day how the pain instills a fear in me like it could consume me. it is such a strange feeling to explain, but i think we all know what it’s like.

  10. Mogging

    The biggest step I’ve ever taken in my journey with arthritis is letting go of fear. Thank you, because I’ve been perusing your blog… it’s late at night here in New Zealand, but I gave in to going home for a “little” sleep at lunchtime today, suddenly it was 4.30 and I’d slept right through an appointment (needless to say having something to do now when I should be going to bed is great.

    I’m just a few months out of a 9 month tussle with depression, with hindsight I’m surprised I lasted so long without it…had an inflammatory prob since I was 16 I’m now 29. I strongly believe that for me it was chemically triggered, with a big dose of prednisone. A large part of what I have worked through since then is getting past the fear, of not doing what I’m told with medication, of the future and the day to day. I’ve always had a positive attitude about what’s happened to me, that it made me a better person (“superpowers” I love your description). But it’s one thing putting on a brave front for family/friends/workmates and another feeling it yourself.

    Knowing there are others out there who “get it” has been so important to me. My husband is fantastic, I have some very very kind friends, I have a supportive family. But at the end of the day they will never (thankfully) understand it from my point of view.

    Support networks seem to be expanding lately, at least in NZ… I’ve found a really cool group of young ish people living with arthritis, we meet up for coffee. I am amazed I went so long without it and that it’s not the first thing suggested and facilitated by doctors (perhaps they see it as a little threat, the old information sharing – or more likely it just doesn’t occur to them).

    Anyway, this ended up much longer than I intended! Suffice to say that at the hardest time in my life I am able to feel the most supported and empowered. Thanks for your part in this.

    Kia Kaha (means stay strong, in Maori)
    Arohanui (big love)


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