EBS

Enraged bowel syndrome.  Because mine is more than “irritable”.  It’s psychotic.

I spent most of yesterday hunched over and in pain with chills, nausea, and a massive inability to go.  Yes, a big change for me.  But not being able to “go” does not mean my gut didn’t want to go.  Oh it wanted to, but it just couldn’t get it together.  Times like this, I feel very much like what is happening is a lack of coordination.  It would fit with the rest of me, my overt and external motor skills leave a lot to be desired.  I walk into things, I have days where I can’t pick something up without knocking it about like a deranged, drunk juggler first.  So why should my gut be any different?  Why shouldn’t it sometimes just be like “whup, ooops, woah!”

I am exhausted from this.  Exhausted short term, I feel like I was in battle yesterday, I am so tired and achy from the muscle tension that comes with all that pain (I did try to relax, I’m not bad at putting the pain somewhere else for short periods, but only short periods, and colicky pain always does me in because you ride a wave, get past it, then lose your focus and when the next one comes you’re not ready for it).  Exhausted long term, as in so fed up with the evil nasty ways of my gut.

I believe today will be a low food day.  I’m having a lot of those.

So what set this off?  My money’s on migraine.  Migraines, and/or migraine meds, tend to give me stasis symptoms in my GI track.  The whole thing.  Nausea and indigestion up top, bloating and constipation down below.  Migraines and stress are the only things that will lock up my usually far too quick gut in a gridlock of pain.  So migraines last week from the whacky weather, hence migraine meds most days last week, plus some gut-meds since I had to be up and at meetings early a few days.  Then some stress because a young co-worker got bent out of shape by my manner (someone who’s very, er, sensitive…I’m not insensitive but I’m finding that I just don’t mix well with people who are femmy and insecure in a work situation – I’d like to work on that but truly, I have no idea where to start.  I think it would require a complete personality overhaul….).  And that’s that.  I tried drinking lots of water – all the meds I take are super drying – but I know there were a few days when I fell short.  So add that to the list of precipitating causes.  I don’t know how I didn’t break my teeth off from all the jaw clenching and tooth grinding I know I know I was doing, which is only going to add to the muscle tension in my face, head, and neck, which puts me in line for more migraines.

What a rotten cycle.

Husband was, as usual, amazing.  He does have the unfortunately tendency to get very very quiet when I feel that bad.  It’s not a terrible thing, I mean, it’s not like I’m up for conversations.  Grunting is about the most vocalization I can muster in those situations.  However, I wouldn’t mind an occasional word of encouragement.  Boy, I don’t ask for much, do I?  The word of encouragement is more so I know he’s not freaking out inside.  He’s a black box when I get acutely ill and when I have the clarity of mind to do so, I worry that the silence is fear.  And I don’t like unaddressed fear, I’ve lost partners to that before.  But, last night was not the time to talk about that.  We will later, when I’m more than a day past the bad and it’s not as acute a memory.

Advertisements
Previous Post
Next Post
Leave a comment

11 Comments

  1. Again, you describe your symptoms so well. You just inspired my next post. I read this page on autonomic nerve disorders last night and it was like “wow”. About your hubby, as the mother of a child with EDS I understand how difficult it must be for him and of course, the fear that must come to you as it does even to my daughter. Hang in there. Will give you a sign when I post.

    Reply
    • Thanks! I was so exhausted yesterday. Slept in til after 11:00 AM, which I never do, and still wiped out. I am sure it is difficult. I have been in the caregiver role, but I don’t know what it’s like to be the partner or parent of someone who has a long term illness.

      Reply
  2. I’ve just posted on dysautonomia and some of its symptoms and have included interesting links (which I wouldn’t be surprised if you may have already come across).

    Reply
  3. I’m really feeling for you right now. I’m wondering if your meds have anti-cholinergic side-effects. I am so sensitive to meds due to this and back when my intestines were a mess, I couldn’t take things like Levsin/Levbid–not that they worked–as they dried me out so much (even antihistamines do this and I refuse narcotics after surgery). Sucks! Must be the meds if you didn’t change your diet. Evil little pills. My mantra: this too shall pass (until it comes back).

    I’d love to find any man on earth that can deal with a sick woman, but I’m betting that in your case hubby is a good guy and just doesn’t know what to do. Most TABs (Total Able-Bodied) just don’t “get it.” Oh, you can steal that term–I took it from a fellow sick friend! I like your idea of having a talk about needing more encouragement/support. Foreign concepts for men in general I think… Maybe flashcards with things he could say would be good while you’re dying in the ol’ WC?

    I loved the comment about the co-worker. I have this issue as I’m very direct, especially if I need to get something done and someone is roadblocking me. I’m an ESTJ, if familiar w/that test… Rare in women. I was basically raised by my Napoleon-complex father due to my weirdo mother, so I think like an assertive man. So frowned upon in females–I know. I work on efficiency, not emotion, and that’s where dealing with most women is a HUGE problem. Don’t sweat it, D! You are who you are and it’s what makes you a survivor. I wouldn’t change your personality unless you are aggressive vs. assertive, which I doubt. I find that more in the passive-aggressive women who wish they had balls, but don’t, and then overcompensate w/the aggressive crap. Lol. Imagine that girly-girl dealing with all you go through! She’d never get off the freakin’ floor. My 2 cents…

    Reply
    • I am pretty sensitive to them, I can’t really take Lomotil unless it’s a really really bad case, and even then I have to assume that it will swing me far, far in the other direction. Usually, levsin-SL is ok. But I think in combo with Tizanidine and Fioricet, perhaps not so ok.

      I like TAB, definitely adding it to my vocabulary.

      Reply
  4. Thanks for liking my long post! It was so hard to condense as it was “my story” for the last 12 yrs. Wore me out… I’m going to use the laptop less.

    Hope you’re doing a bit better-A

    Reply
    • It was a great post. I can believe that it was exhausting. Laptops are tough on us. Bad for hands, arms, and neck.

      Reply
  5. That is horrible. Hope you get some relief soon. No fun!

    Reply
  1. Understanding EDS symptoms « Sheep in a basket

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: