Chronic Illness: Battling Feeling like a Burden

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It’s a lovely summer afternoon, even if it is a bit humid outside. I’m sitting out on my back deck, with a cold Porter, my journal and my chromebook. My dog is sitting on one of the cushions on the deck, and I’m watching the not-so-little-anymore-squirrel babies climb all over the wooden fence.

It’s a nice afternoon, enjoyable, and I am most certainly grateful for it.

I haven’t been feeling good these past couple of weeks. It started off innocent enough, a bit of cramping, a few extra trips to the bathroom, lack of energy. All of which happen, even during “remission” from Crohn’s Disease. Admittedly though, with my past experiences with Crohns (the first 10 years out of the 12 I’ve had it) it did strike a bit of fear into my heart. I never want to be that sick again.

Anyway, I carried on as I normally do. Upped my water intake (as even a mini-flare will dehydrate me and set my IST & POTS off), at a little bit less, and generally took it easy. Of course, sometimes life just doesn’t work out the way you want it to.

Late last week the symptoms rocked their way up the scale of severity. Joint pain, near constant nausea, between 10-20 bathroom trips during the day (I don’t count at night as I’m too busy being an emotional wreck) and of course a headache and/or migraine and constant tachycardia.

I knew a full out flare was happening, but there was a problem. I had bought tickets for us adults and our kids to go see Reverend Horton Heat at Milwaukee’s Summer Fest. It was also super humid, and pretty hot out, which could put anyone on their ass, sick or not. However, one of my biggest takeaways from being chronically ill for more than a decade now is to never let your illness steal everything from you.

So we went, we made it there just in time, and 2 out of 3 of the girls enjoyed themselves (we brought the neighbor’s daughter with us) and it was fun. I had a super hard time regulating my temperature (Thanks Autonomic Dysfunction) which was pretty miserable and embarrassing as I was sitting there drenched in sweat and shivering. It was honestly worth it to see my kid trying to get video of it and grinning. The kids were all super tolerant of my extra bathroom breaks, as well as being generally exhausted afterwards.

However, as the spoon theory goes, I used more than my fair share of spoons that day, and was negative spoons the next couple. The night before last I was fucking done. I was in and out of the bathroom, and in immense pain. I couldn’t keep food down or even bother digesting it, and was so exhausted I would burst into tears at random.

I condemned myself to bed for the day yesterday because I just couldn’t function anymore. Beyond bathroom trips and needing more water, I just laid in bed. The nausea was completely over powering in the morning, and I spent more time running to and from the bathroom then I did laying around. I knew I had overdone it, and had overdone it for something fun, needless to say I beat myself up for having a day in bed.

Instead of laying there, sleeping, or just letting my body rest, I worked myself up about the things I should have been doing. It was absolutely ridiculous. However, when you’re chronically ill, in chronic pain, or disabled it’s a constant worry.

I’m not pulling my weight.
Everyone has to take care of me.
I should be doing more.
I’m not as sick as [insert time in the past].
The kids are going to hate me for not being fun.
I have so much to do.
Laying in bed just makes everyone else pick up the slack.
I’m a burden.

It’s absolute trash, not to mention bullshit.

It’s just hard to realize that sometimes you need a little rest. Sometimes, you have to take a day off.. just like any able-bodied person. It’s also important to say that anyone you’re with, whether a significant other or family, should love you enough to understand this.

Some days we just have to put our to-do lists aside, and take a day or however long to recover from pushing ourselves further than our bodies allow. There’s no sense in running ourselves on negative spoons, making our bodies worse for the wear, unless there’s no other choice. When that happens, we can only do our best and rest when we can.

It’s super important to remember that no one asks to be chronically ill, and almost all of us would rather be living normal lives. It’s important to give people the finger if they give us any shit for resting, healing or being sick. That includes ourselves.

Take a break. Get those spoons back.

 

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Infusions and Awareness Week

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Mouse Juice Time

                       Mouse Juice Time

December 1-7th is Crohn’s and Colitis Awareness week.  It’s only fitting, I suppose, that I am in the hospital for a few hours to get my Remicade Infusion.  As you can see from my expression up there, I’m not having a good morning.  I’ve had a headache (no fever so the infusion will go on!) for 3 days, and I can tell it’s infusion time since my Crohns Disease is acting up.  It was a hot rush this morning to get out of the house, between getting the kid ready, and getting myself out of the bathroom, I was damn near in tears.  I barely managed to get the short kid off to school on time and then had to rush back to the house to use the bathroom.

I had already called in my height and weight for my infusion bag to get sent to pharmacy, but pulling into my driveway, I realized I asked them to mix it early.  I had thought my appointment was at 9am, however it was set for 10am.  All the rushing around, and getting anxious being stuck in the bathroom for nothing.  Sitting in traffic I about lost it.  I did lose it after having to stop at a gas station on my way in to use the restroom.

So here I am.  After 3 tries, my infusion nurse realized that my hands/crooks of my arms were not working for IV lines, so I now have a line in my inside forearm.  Whatever works I guess.  He noted that over the past few infusions, it’s harder and harder to get a line (regardless of how much I drink or eat before hand).  At least he’s willing to get creative.  However, being stabbed repeatedly isn’t my cup of tea after a rough morning.  ::Sigh::

I’ve been doing alright lately.  I took myself off of the 6mp a couple of months ago, I had noticed no difference in my symptoms, and the side effects were obnoxious.  Most notably was a loss of appetite (I like my food dammit) and hair-loss.  The hair-loss was one of the bigger reasons why I chopped my shoulder length hair off, that and my innate ability to not to do my hair (also known as lazy-ass syndrome).   I figured screw it.

After I took myself off of 6mp, the frequency of my Crohns symptoms actually decreased, and my hair stopped thinning so rapidly.  Finding out that my disease had spread to another part of my intestines prompted the idea that the Remicade wasn’t working anymore… which led to the super high dose of 6mp.  Welp, here I am.. still kicking on Remicade.  Hanging in the balance to see if it continues to work, or puts the new area in check without the 6mp.  I’ll argue my case later with my GI.  If Remicade ultimately fails, I’m still up for trying that new medication, but whatever.  Take it as it comes.

One of the things that really, really gets to me, is the fatigue.  I am constantly tired, getting off of the 6mp seemed to help that a bit, but I’m still exhausted by mid-day.  Hell, over the holiday weekend, I was exhausted a couple of hours after I woke up.  I think that’s the most frustrating part of it.  Even if I’m virtually symptom free for a couple of days, my joints hurt like a … well you know.. and I’m tired.  I can deal with pain and diets, but being tired for what seems like no reason just pisses me off.

This disease sucks, for a lot of reasons, but it’s tough to deal with because it’s a so-called invisible disease.  I don’t look quite so bad on the outside… hell, when I was at my sickest I kept getting compliments about how great I looked with the weight I had lost.  All other people know is that I’m always tired (some think I’m just too lazy to do things or just want to blow off plans) and that I use the bathroom a bit more.  It’s hard explaining to people that it’s more than a tummy ache… over and over again.

No matter what you explain, or how many times you explain it, the social effects are… depressing.  I’ve had family get upset because I didn’t want to continue at the pumpkin patch (after having an accident).  I’ve had coworkers/bosses not realize that I am serious about going home after using up all of my extra undies and Imodium.  I’ve had friends get mad when I don’t want to go out, or cancel plans because they don’t *see* my sickness, or “come out, you’ll feel better once you get moving”.  The fact that I use up my spoons some days before I even make it into my clothes just pisses people off.  (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

It could be worse though, and has been worse.  Most days I’ve been managing to keep a positive outlook, some days though it just sucks.  Over the past handful of years Crohns and UC have gotten a lot more attention than before, and awareness is spreading.  Some days I’m thrilled that people are learning about IBD, some days I could give a fuck less.  Some days, even my online support network can’t even get me out of a funk.  Either way, the best thing to remember is that those of us with IBD are not alone.  It’s okay to feel crappy, it’s okay to say NO when you don’t feel up to something, and it’s okay to feel upset.

Days like today?  Where I used up all my spoons before I put my shoes on?  I’ll make it, you’ll make it, and things will get better.