Sick Sick? Or MCTD Sick?

September 25, 2010

I had a flare up this week. I think it was my first quite bad one actually.  I was quite concerned that I was going to be back to square one, despite being on millions of meds. But as quickly as it arrived, it went away.

I woke up on Tuesday morning and my left arm felt broken. Not that I’ve actually had a broken bone before but I couldn’t move it and if I bumped it I shouted out in pain. I’d been on a long walk with my flatmate’s dog on the Sunday and I wondered if holding the leash  had taken its toll.

It wasn’t just that though, I had the ‘princess and the pea’ experience again. You know the fairy-tale where you knew someone was a princess if they slept on a hundred mattresses and could still be bruised by a single pea on the bottom of the pile?

On a bad day, I awake feeling as though my soft mattress has actually been hiding rocks in it and I wake stiff and sore. I’m ‘this’ close’ to lifting my mattress and searching for the damn pea! (If only I had the strength to lift the mattress)

Anyway, this week that aching, bruised feeling lasted most of the day. I also felt as if my forehead and jaw were bruised…tried to remember getting in a punch up but pretty sure that didn’t happen. I guess I kind of felt how normal people feel when they have the flu…and a broken arm.

So it got me thinking…what if I did have the flu? Would I know it? Or even worse, what if I did have a broken or sprained body part and I just endured the pain thinking it was part of MCTD? Of course, if it didn’t go away that would probably be a hint but it just made me realise, I can never know my body, know what is normal and know when to be worried or to just bite my lip and get on with it.

Am I sick sick? Or MCTD sick?


Signing out,

Princess Naomi


9 Responses to “Sick Sick? Or MCTD Sick?”

  1. Bev said

    hey princess nomes….. all’s i can say is —- from my own experience, with hypervigilant immune system responses, whereby the immune system confuses the protein of the “host” body as a “foreign” cellualar invader, and thereby attacks it’s own self, then, when a ‘real’ foreigner invades (e.g. common cold virus), it makes short work of it. for the 3 years that my immune system sent it’s little pac-man in to munch up the foreigners – while the silly bugger also attacked mercilessly my own organs, i didn’t once have a cold nor flu’!! it gave me the silver lining on the cloud, that i could smirk with glee while all around me succumbed to the dreaded ‘lurgy’, with their snot-noses, raspy throats, coughing and spluttering and moaning. silver linings in auto-immune world are luxuries, and, i took the opportunity to luxuriate.

    now, the other side to this coin is, once my immune system stopped attacking me, i began to go down with the seasonal colds/flu’s, just like a “normal” person, and, i chose to celebrate them once again. good sign that all was “well” in my world once again. even if that meant that my immune system seemed to have some catching up to do, and i got every freakin’ thing going, for a couple of years?

    so, if you indeed have the ‘flu, then, that’s a good sign. but, if you have an nasty auto thing happening, then, at least you can smirk at your fellow suffers, and check out some silver linings? either way?

    but, in reality, in the meantime, i wish for you, an inbetween world, where you don’t have to search/scrutinise/analyse, whilst hunting down any silver linings………… cheers….. queen-of-the-bea-ess.

  2. Hi Bev,
    Thankyou as always for your insightful and entertaining comments. I will look for this and other silver linings.
    Kind of wish you had a blog I could visit and see what your experience was/is like. Told me it would be great to meet at some point (not sure if we have before) and have a good old chin wag IRL (in real life)
    Princess Naomi (yep, think I’m going to keep that title)

  3. Bev said

    well, p.n. – i am blogless, and, a lot of other lessness-es as well. but, i will maybe sort out some historical info regarding my journey, and forward it on via your ma? or, perhaps we’ll get our act together one day sooooon, and, have a catchup, and talkfest it? we’ve ( meself and your ma’s cuz) not long ago got a farm near goulburn (at lake bathurst, so just the name has de ja vu for your ma and me, with ballet and tap dancing being a feature??? !!!! looong story!!). so, p’raps you can come down one weekend with your ma/pa, and, we’ll sort some stuff? and, your ma and i will TRY and refrain from breaking into various dance forms…. !! no, seriously, we will??? try that is??? :o)

    meantime…… wishing you LOTSA silver linings….. :o)

  4. susana said

    Dear Princess Naomi I had the same exact pain and feeling today, just got up from bed to check FB and to get ice for my joints. As a matter of fact my FB status today says “Did someone sneak in while I was sleeping and hit me with a baseball bat?” I find comfort in the fact I am not the only one going through this but discomfort in the fact that there are so many of us and no cure. Your fellow Princess,

    • I love that I am Princess Naomi now, hahaha…so Princess Susana…thanks for the comment. That really sucks that you have been beaten up in your sleep as well. We’ll find the person with the baseball bat and stop this madness. Have you ever met someone in real life who has MCTD? I haven’t, and I think it would be so weird to compare stories of random pain.
      I hope you got over your flare and you’re feeling better.
      Princess Naomi

  5. susana said

    I have never met anybody with my same diagnosis and maybe I would just feel normal for a minute, if that makes sense. That person with the bat eludes me, but I am hoping for a cure to make it disappear. Love your blog. I am in California if you don’t mind posting what part of the world you are at please do.

  6. Hi Naomi!

    I know exactly how you feel! I have only been diagnosed for a very short time (finally got diagnosed 2 days ago after a long 6 month journey of many different doctors basically calling me crazy) and with the diagnoses comes many questions, one of which is “Will I know if I’m sick other than just being MCTD sick?” You have said it best!

    Although I hate that anyone else has to go through the same things I am going through, it is really nice to know that I am not alone! Thanks for blogging your experiences with MCTD and I’m excited to keep reading.


    • Hi Lindsay,
      So glad you’ve now been diagnosed. That is great news…now bring on the treatment!! I really hope things start feeling better really soon. Enjoy the blog! Naomi

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