The Ultimate Betrayal

April 8, 2012

I’ve been seriously betrayed this week. It hurts. It’s made me incredibly angry and frustrated. But the worst part is, it’s my own body that betrayed me. I was enjoying the Easter break with a friend, the weather has been incredibly beautiful for this time of year and we were out enjoying the sun, walking through some stunning wetlands, joining in a lively festival at a historical town, kicking a soccer ball, tossing a footy and we might have even rolled down a grass hill.

But then over dinner, I started to get a bit of a shiver – I had a jumper on but I felt a chill in my bones. I started to feel quite achey and within a couple of hours I was shaking uncontrollably with fever. I had a pounding headache and felt nauseous. For the rest of the night I woke every half an hour, sipping on water and trembling. My thoughts were hazy and confused and I was wondering if I’d caught the flu.

Around 4am I got up and had a steaming hot shower to try and break the fever. Eventually it worked and the chill turned to sweats.

I started to remember that this was typical of previous MCTD flares I’d had and I felt incredibly angry that a day in the sun with a bit of activity had ended like this. What frustrated and scared me further was that I had a six hour drive ahead of me and I was feeling too weak to get out of bed.

I started to try and think of ways to break up the trip, maybe extend my accommodation or stop somewhere for the night. As I often find with this illness, I’m having to plan and re-arrange things and it makes me feel trapped and like I can’t rely on myself. And if you can’t rely on yourself, who can you rely on?

One of the hardest things to deal with is being out of control – being so sick in-front of whoever is there. Apart from my immediate family – I don’t know if I’ll ever get used to people seeing me during a flare for the first time.

There is an awkwardness, they want to help, they want to do anything to help but there isn’t anything that can be done and I know I just have to ride it out. They can bring me blankets and water and panadeine but in reality I am alone in my pain.

I hate that I put my friends in that position and that when I’m in the thick of it I can’t focus on anything else but how sick I feel. And as the fever subsides, I feel humiliation and embarrasment that I can go from the fun-loving girl to a weak patient in a short space of time.

This is not who I am – this is not who I was. But now this is how, from time to time, I am seen.


12 Responses to “The Ultimate Betrayal”

  1. Phil said

    I was just dx with this disease and am miserable have been for 2 years! I have swelling from my jaw to toes and hope everyday that the NSAIDS work! Was on steroids for one year but being an ER nurse when my immune system decreased it almost killed me last summer! I feel your pain literally and wish you the best of luck if you would like to talk ever just email me I hope it gets better for you just turned 30 feel like I am going on 90

  2. Colin said

    Hi Nomsie,
    Unfortunately, you have to play the hand that you have been dealt. Nobody likes to feel out of control it doesn’t matter whether it’s a mental or physical problem. Being embarrassed, about a shortcoming in you or your personal life, is nothing to be ashamed or embarrassed about.

    As for friends seeing you in this state, think of thier position, totally useless! All they can do is bring water and pills, it doesn’t seem like much but it’s something.

    If they are good friends and want to stay in your life they will accept you for better or worse, these are the folks you should want in your life. If they can’t or won’t accept you as you are then maybe you are better off without them. Count me in the former by the way.

    Stay well Miss Joyce, hope to see you again one day. And if I come that far, don’t you dare say that you are not receiving visitors or can’t make it for a cuppa or a beer.

  3. Rebecca Joyce said

    Definitely your most powerful and heart-wrenching entry so far, Nomes. What I hated most about reading it, is that it read like a story, and I found myself wondering “What’s going to happen next?” then the reality hit me that the end of this blog entry probably wouldn’t wrap up neatly by the end like a nice movie. I hate what you’re going through, yet I’m constantly awe-inspired by your courage and determination. This will not beat you. I love you, Bec.

    • Thanks Bec. Sorry to be heart wrenching. Wish I knew what was happening next or even that there will be an end to the story. A happy ending would be great.
      Love you lots.

  4. lisakamphuis said

    Dear Naomi, you should never EVER be embarrassed! Not many peole can bear a complicated disease as well as you. Although I don’t know you that well, from the contact we have had, I do feel I can say that. And remember: you are not alone in this.

    Besides, MCTD is not who you are. It is a part of you and at most it has changed your life. Made you stronger and fight, plan and enjoy everything for the full 100%. But never be embarrased. And if someone makes funny faces at you, I will personally fly across the globe for you to whoop their asses ;-).

  5. Giraffe said

    Dear Naomi,
    My Rheumatologist warned me about sun, stress, and hormones. As beautiful as a sunny day may be after a long winter, keep yourself shielded. Wait till the sun goes down or the intensity is less before you go out. Even with that, put on sunblock. I’m having to adapt to avoid flare-ups. Also, good friends will understand and accommodate your situation.
    Stay strong 🙂

    • Thanks Giraffe,
      I have learned my lesson about the sun – I think! And luckily this person is a good friend – and I am so lucky with all my friends, family and work mates that, while they can’t understand and don’t pretend to – they care.
      Hope you’re doing ok.


  6. I was diagnosed a year ago, and It has been a long year, to say the least, but everything you said is how Iv felt. The good, The bad, and the ugly. It is such a relief to finally hear from someone who deals with what I do each and every day. That is the whole reason I started my blog so Thank you.

  7. Jan said

    Betrayal is the perfect word when MCTD decides to take over. My heart goes out to you.

    But! Your more recent posts sound like life is on the upswing…Hooray!


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