Fatigue & Stfu

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I am exhausted, I feel like I haven’t slept in days. It’s reminiscent of my rambunctious teenage years, where I’d go out drinking cheap beer and staying up all night, but still some how make it to work the next morning and survive.  That’s what it feels like anyway, even though I slept almost 24 hours since Saturday Night.

My eyes burn, my head is woozy, my muscles feel like I just got done running a marathon (add in that my fatass doesn’t run). I’m so tired, so out of it, than when I went to stand up earlier at work, I almost blacked out. (BP dropped too fast) Almost everyone I have seen or talked to today, in and out of work, asked me if I was okay. Apparently I look like death despite my jet black winged eyeliner.

This is the worst my fatigue has been in a decade, since I was first sick with (undiagnosed) Crohn’s Disease. I’m usually a trooper when it comes to toughing it out, coping, and getting through work, but it was enough that I called off work yesterday. It’s just rough. I’m trying to cover everything, you know, up my teas, oils, supplements, and eating, all the way to getting enough sunlight. It’s a task just to get out of bed these past few days, not because of the pain, but because my lack of energy. I can deal with the pain, just not having the energy to sit up in bed is what’s kicking my ass. I’ll either figure it out, or it’ll eventually pass, but… I’m having a hard time.

I don’t particularly like bringing attention to myself at work when I’m sick either. It’s really nice when people ask how I am, but I get really aggravated when it’s followed up with a typical “I know how you feel, I had…” statement. One girl at work really is bad at it, and I’ve been trying for years at this point to not snap at her. This morning it went like this:

Her: “How are you feeling?” Me: Not great.. Her: “Oh, I know how you feel! I’ve been tired lately and this weather has been giving me a headache!!”.

I smile, and go back to work, but in my head I just scream “a booze headache and lack of sleep isn’t the same as being sick for a decade!” The worst is when the other girl at the office says “Well, if you feel that bad, just go home!” I’m sorry, I can’t. If I went home every time I felt like shit, I’d maybe make it to the office once a week, I have to support myself, I don’t have any other choice.

Yes, it’s a bit of a pity party, but I’m tired of it. I’m not going to say anything nasty, but you bet that I’m strangling them in my head when I’m smiling on the outside.

I’m just frustrated.

 

I hope I start feeling more like myself soon.

 

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Awareness Week: Back with a Flare!

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It’s like awareness week… just the mere thought of Crohns Disease, woke the damned thing and it came back with a vengeance.  After a couple of months with few problems, I flare as soon as awareness week hits.  Yup, Crohns.  I’m freaking aware of your presence.  Jerk.

Ahh well.  I guess that’s the nature of the beast.  At least I made it through Thanksgiving with few other problems besides bloat and cramping.  I’m sure since I’m feeling a tad bit better today, it’ll flare back up right before Christmas.. then shortly after my birthday.  As always.

Crohns has taught me to look at life a bit differently over the years.  I don’t cancel much because of my disease, not any more at least.  I’m lucky to have a job where management understands that with chronic illness, it always comes back sometimes.  Hell, each time I got stuck in the hospital, I still had a job waiting for me when I came back.  I used to cancel a lot of plans and such when I started to get sick.  I still do on occasion, but mostly I just do them on my own time table.

For instance, we had plans to come up to my parents house this weekend, to relax and visit, but also to cut down a Christmas tree.  The boyfriend suggested that we stay home since I was feeling so rough.  Honestly, it was tempting to spend the weekend in bed, but I know if I take my time and don’t push too hard, I could make the trip.  I just move a bit slower, enjoy the slower things.  Instead of roaming on the ice, I sat by the fire.  Instead of running around outside, I enjoyed the apple cider from the crock pot (which apparently soothed my innards pretty good).

I guess my point is, is that almost anything is do-able in a flare, it’s just a matter on making yourself comfortable doing it.  There will always be some days that you are in far too much pain to do anything other than curl up in a ball, some days where you start designing your bedroom around the toilet.  Some days though, it’s worth taking a chance and doing what you want to do.

I’m glad I got to come up and relax away from traffic, wailing sirens, and the rush of normal life.  I’m glad I’m able to get a break.  It’s almost time to take the kids to get trees, so I’m off.  Hope everyone has a happy Sunday.

Everything You Ever Wanted to Know About Silence

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This is one of my favorite bands.  When I first started listening to them, I fell in love with the raw emotion and the bitter wounds these songs painted a picture of.  Years later, I related to this band more than I wanted to.  The lead singer, Daryl Palumbo, suffers from Crohns Disease.  This song was specifically written about the disease and it’s effect on his life.  The lyrics make me stop in the middle of thought every time I hear them.  Give it a listen though it’s not everyone’s cup of tea.  If you’re daring, Google the lyrics.

I’ve never reached full remission, not once, with this disease.  I’ve come very close over the years, but as they say, no fucking cigar.  For the past couple of years, I’ve only dealt with problems from my fistula (connects my bladder and intestine).  Pretty lucky, and I am have been thankful.  The “typical” symptoms have for the most part, stayed away.

Well.  They did stay away.  Past tense.  Yup.  I am back in a full-blown Crohns flare.  I had been crossing my fingers over the past week or so, thinking that maybe it was a stomach bug.  Maybe I really wasn’t getting sick, it was a fluke.  It had to be a fluke.  I even had a moment of hope earlier.  I only got stuck in the bathroom just a couple of times.  I managed to eat *and* keep it down.  Luckily my damned innards decided to at least keep the false hope up until I got home.

To be quiet honest, I am having a hard time dealing with it.  The fistula problems and the fatigue are pretty difficult, but the full blown flare?  It’s been pretty hard to deal with all of the symptoms combined again.  Then of course there’s the fear.  The last time I had a flare, was a couple of years ago.  I had been on Humira for a couple of months, and out of nowhere got sick again.  Then I got sicker.  Then the weight starting falling off.  Humira was no longer working, despite increasing injections.  That’s how I ended up on Remicade to begin with.

What if Remicade isn’t working anymore?

I don’t know.  I’m trying not to worry about it, I’m trying to keep my stress down.

Living with Crohns Disease – Intestines for Sale

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I think one of the biggest things I hate about living with Crohns is the future.  When you have a chronic illness, sometimes it can flare up, for no fucking reason and kick your ass (figuratively and literally).  I hate not-knowing.  Especially lately.  When I was in a full-flare, not-knowing wasn’t bad.  The only thing I couldn’t predict was feeling better.  So when I had a random day, out of the norm, it was fabulous.  Now though, I’m practically in remission.  The normal symptoms of my disease are practically non-existent, except for the fistula.

Yes, I still have it.  It connects a loop of my intestine to my bladder and it makes for  a bad day.  I was planning on surgery but a multitude of things made the decision for me to put it off.  (And unfortunately followers, this decision is not up for debate.)  So basically as the decision goes, I am trying to stay as healthy as possible for as long as possible until I have to have surgery.  It’s a horrible plan, but at that point in time it was either choose to have the surgery and fuck everything else up, or put it off so life is more stable for a major surgery.

Anyway, on with my rambling.  So for the past few days, after months of being symptom free, I haven’t been feeling too well.  Fistula symptoms, upset stomach, diarrhea and nausea.  I’ve been taking it easy, sticking to teas and easy to digest foods instead of my coffee and grease.  Doesn’t seem to be too much change, but I’m still wary.  Having had two obstructions in the past, anytime symptoms mimic the early signs of obstruction I get worried.  So I’m taking it easy and hoping for the best yet still preparing for the dash to the hospital just in case.

Sometimes Crohns Disease seems to suck the life right out of me and not in the way you’d think.  On my bad days, I still strive to do everything I normally would do as well as things I want to do.  It’s the mental aspect that is different.  It turns my normally hectic mind into something more anxious and scary, almost more chaotic and full of worry.  I don’t want to end up sick, I hate being in the hospital, but at the same time, I long for all of this to be over with.

Normalcy.  It’s something I strive to have, but Crohns Disease messes it up.