Im not thinking about it!

It’s been 3 years since diagnosis and my ICD and something dawned on me…I’m not thinking about it as much as I used to!! That is an enormous milestone! When you can go on living and not think about Brugada Syndrome, it’s freedom. Granted, I think about it here and there,as far as precautionary, but it’s not as much fear as it used to be. I ride horses. And right after diagnosis it took me 9 months to get back on horse back. And when I finally did, I was scared to death. I kept thinking all these frightening thoughts, which made me not want to do it. I took a break from it. I gave up an activity that gave me joy and happiness because of fearful thoughts. That is not living. I stopped “doing” in order to “think”. We can’t be prisoners in our minds and bodies. It’s not healthy in any way, shape or form. A few weeks ago I started riding again. And I’m having a blast. I look forward to going and learning and love it. And yesterday it dawned on me that not ONCE in the last few weeks did I think about Brugada while riding. I listened to my trainer, enjoyed the horse and the scenery. This is huge! It took 3 years but Im actually doing what I used to do without fear around my neck like a noose. I wanted to share that with you because I want you to know, life will be normal. Sure, we will always have to think about it, but on a healthy level. Not on a level where it controls you and steals your life away. All my readers have seen me wrestle mentally the last 3 years. I’ve written some very sad, dismal stuff. Some of it is down right frightening, especially for someone who was just diagnosed. It was never my intention to scare a single soul. Don’t forget this blog is MY experience, MY diary, MY journal. It doesn’t mean you will experience anything that I feel or think. It’s only a glimpse into MY personal life. With that being said, all my readers will realize that for me to be able to do my favorite hobby, and smile and have fun doing it, is an AMAZING milestone! I hope all of you HAVE reached it or WILL reach it! You WILL reach it!!

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4 Comments (+add yours?)

  1. Christine
    Jul 07, 2016 @ 16:24:36

    Hello, I have just found your blog as I am trying to find out more about the condition & if what I am experiencing is normal? I was diagnosed December 21st 2015 & had an ICD fitted 22nd. I had been having recurring infections resulting in high temperatures, erratic pulses & passing out. Over 6 months after having my ICD being fitted I feel I have just been left to my own devices with a diagnosis and not a lot else. Everything suggests after an ICD is fitted life just goes back to normal with routine check ups!! I am nowhere near back to normal. I have been to my GP today as I am experiencing a worsening of my palpitations. I am exhausted most of the time. My momentum improved for a few months but the last few weeks I seem to going backwards. My GP said he does not know enough about it so I should phone the Hospital where I have my check ups? The information for Brugada all points to exercise not having an impact on the syndrome. I find my arrhythmia does play up during & after exercise. Not always but it does. Sorry I am struggling & just thought someone who has been diagnosed longer than I have may know something I don’t & may know if how I feel is normal. I feel lost & out of control. Thank you in advance.x

    Reply

    • AliciaB
      Jul 08, 2016 @ 07:32:38

      Hi Christine. What does your cardiologist think about this? Does he think the infection and fever can be tied to the ICD? Bear in mind, fevers from any illness can cause arrhythmia with BrS. That’s why it’s essential that with the slightest fever, we take medication to bring it down. And what about any medication to help slow down the palpitations? I am on a med for it and it’s helped quiet down my heart alot. Talk to your GP or cardiologist about it. And as far as exercise, I can’t get my heart rate to high without arrhythmia. I know they say sleep is dangerous and activity isnt, but I don’t totally believe that because me, and many I have talked to, feel sicker with exercise. But there are many who don’t and feel fine! It depends on the person. Maybe they can do a cardiac stress test where they hook you up to monitors while you walk on a treadmill? It helps see how exercise is tolerated

      Reply

      • Anonymous
        Jul 08, 2016 @ 14:10:28

        Thanks for replying so quickly. I am not on any medication at all. I have had several courses of antibiotics though. The virus / infections I started with last year were how my Brugada Syndrome came to light. I don’t know if the current batch of infections could be down to my ICD & in fairness I have not even thought about that possibility. My GP is now taking more bloods to see if they shed some light. I have spoken to my arrhythmia nurse this morning & she is going to email my cardiologist explaining what appears to be going on. She has said the next episode I have to send an extra download from my home monitor & to phone to say I have sent & why. Also advised the next time I feel dizzy & lightheaded to stop what I am doing & get myself to the hospital. This seems extreme for the symptoms. I will listen to her advise though as she as been doing her job much longer than I have known I have Brugada. I do take paracetamol when my temperature spikes.

      • AliciaB
        Jul 09, 2016 @ 12:47:59

        I’m glad they are taking precautions though. It’s better to stay on top of it all and maybe get an answer even if a little extreme.And definitely speak to your cardiologist about the infections and palpitations

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