Monday, December 10, 2012

My Caffeine Problem

My name is Kirsten and I have a caffeine problem.

Seriously.

After multiple meetings with my neck PT and her partner in crime aka the pool lady, it has become apparent that I have a caffeine problem. I have been chided. It has been recommended that I try tea but the ones I have gotten either smell/taste like rotted plants or contain things I am allergic to. It's incredibly frustrating.

It seems to me right now that I am stuck between a rock and a hard place. My fatigue has been bad enough for years that I just have kept taking in caffeine. I didn't have a choice really - going to school and working, both full-time, requires a certain amount of being awake. Even then, I would fall asleep in classes or nearly do so at work.

I still feel as though I haven't really a choice here. I have to work full-time to pay all my grossly expensive medical bills, buy meds, pay rent, and eventually have a wedding. As it is, sometimes I am living paycheck to paycheck because of the hours missed due to the pains and limitations that pop up with this damn illness.

Even with the caffeine, I sometimes fall asleep at work. I can fall asleep standing, trying to dance around, sitting, and just about every other way to be captioning phone calls. Heck, I can fall asleep just about anytime other than when I actually crawl into bed it seems - even in the bathroom. I've brought this up to my GP and he responded that I should just continue to imbibe these caffinated drinks until my arthritis is under control...

He's a good doc but I don't gather he knows as much about my illness as he possibly should. I have never really had it under control. Heck, I have a friend facing a bone marrow transplant because of the same inability to get this under control. She doesn't know how I can work and make all of these appointments and do everything like I do. Sometimes I don't know either!

I sense a med change in my future, whether good or bad. Will I get to the point that I can be actually awake during the hours I'm required to be? I really don't know.

For now I think we are at the point where I'm going to have to transition from fancy coffees to regular-ish coffee and possibly think about the notion of caffeine pills. No one I've talked to about this seems to think it is a good idea. However, 90% of my meds cause drowsiness on top of my fatigue. I can't function without these meds. I have terrible insomnia (painsomnia!) at nights and even have a condition where waking brain waves interrupt my REM sleep. It's all fine and well for everyone to tell me to stop taking in caffeine/soda/coffee/etc when they don't have to see what happens on days where I can't exactly function due to any of a myriad of things. It's all great to talk about working out up to 4 days a week and asking me to do exercises 4-6 times a day when you don't know just how much energy it takes to just put away the dishes or laundry or shampoo my hair.

People mean well with their recommendations but it gets really difficult trying to actually carry them out. I have to work to see docs and PTs so they can tell me to not take in this or that which will limit my time to work and then my insurance disappears and I can't see any docs anymore.

Sigh.

I did my enbrel shot last night and so I've been achy and angry all day. I thought the Batman shirt would help, but apparently not when you combine it with grumpy pants.

2 comments:

  1. Have you ever discussed Provigil or a very low dose of adderall for the fatigue/brain fog? Not really an awesome option, but there are a ton of autoimmune patients who use one of the two for the fatigue.


    Hang in there. Sending virtual spoons,

    Emily (Chronic Curve)

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    1. Thanks dear. I have not, but only because my allergies basically mean that I cannot take a lot of stimulant type drugs :-/ Maybe I can bring it up with my rheumy at my next appt and see what she can find.

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