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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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.

 

Come on Spring!

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Every little taste of warm weather gets me even more excited for Spring. I have so many things I’m looking forward to that it’s beyond ridiculous at this point. After everything that’s gone on in this past few months, it feels like I have a fresh start.. at pretty much everything. So I guess that’s what Spring is to me this year, a figurative new leaf, a fresh start, everything.

So this year I’m going to be doing the garden all on my own, and quite frankly I’m thrilled. In the next week or two I’m going to go buy myself an asparagus plant, hopefully I two year one if I can find it. I’ve been meaning to plant asparagus for years, but I’m too impatient to wait for it, or I talk myself out of it at the last second. When I put that plant in the ground, I’ll probably go ahead and put in my first round of radishes and lettuce. I’m not sure what else will go in the garden this year, definitely green beans and tomatoes, maybe some peppers and carrots, but beyond that I’m still debating. When my ex was still maintaining the garden, we kept planting things we really didn’t eat a whole lot (eggplant, broccoli) and I really don’t want to waste the space this year. I don’t know, I’ll figure it out soon I hope. Haha.

Moving on. So the ex came and picked up his dog the other day. A small part of me misses that stinky old hound, but the stress in my house has decreased significantly. Dealing with two dogs, one of which was a stubborn nose-driven-beagle was just too much for me with everything else that’s going on. One more dog is much more manageable for me. It has it’s perks too. I let Thumbs stay out of the crate at night now, and she’s much happier and I’m sleeping much better now too. I had always crated her with Zoe because I’d feel bad putting one dog in the crate and leaving the other out. Zoe though couldn’t be out at night or anytime we weren’t in the room since she’d have accidents in the house and rummage through the garbage can every chance she’d get. Beyond that, it’s much more convenient now to go take a walk with Thumbs. With both dogs, they’d both go every which way, and pairing that with my motor mouth child, walks were far from relaxing. Now, my dog just does her business, and Noodle and I talk while walking. We’ve made it a goal to walk at least 4 times a week. So far I’m loving it. The mild exercise paired with the lower stress in the house is really helping me keep my head in a good place.

My birthday is coming up as well. This year is the big 30, which to me feels like 40 but who’s counting. I’m not as effected by the number as I thought I would be. I mean, I’ve already hit most of the milestones my age group is going through right now, years ago. So I guess it’s not a big ole thing. Not sure about a mid-life crisis yet either, I’m pretty sure I’m mentally 80 years old as soon as I get off of work. I’m content with a book, my journal and some coffee or tea. The rowdy night out is a rarity, and has been for a while. That’s fine with me. I always thought I’d be upset about turning 30 though, and honestly, I keep forgetting about it. We’ll see. I know Noodle is more excited than I am, but beyond that I’m not sure if I’m even doing anything for my birthday. Who knows!

Work is going well, same shit, different day, and I’m still there so that’s a bonus. I’m working on writing more, but haven’t been able to really drill anything solid out. I’m still on the hunt for a group of some sort to join, but I’m not really finding anything I like yet. I did find one group the next town over that’s something along the lines of books and brews at a local pub that sounds fun, but I haven’t had a chance to check them out.

My health stuff is basically stable, my Crohns pops up here and there, and my heart hasn’t given me the finger lately. Feeling quite a bit better with my anxiety and such as well, but all of that is a work in progress I guess. Just glad to finally be feeling more normal and.. gasp.. dare I say.. happy? I guess not being told how much of a horrible person I am damn near every day helps. Whodathunk?

The kiddo is doing great! She just brought home another report card earlier this week. She’s still getting straight A’s! I’m really proud of her, and that’s honestly an understatement. She’s doing so well in school, and has really stepped it up with helping out around the house. She’s about excited for spring as I am. I think I’m going to get her a new set of roller skates as a gift for her report card, and to give her something to do outside. The kid not only beats me out in smarts, but she’s still hella more agile than I ever was. I swear, she keeps me on my toes.

That’s about it I guess. Planning a big vacation with the family later this spring, but beyond that, it’s been pretty laid back and relaxing. It’s been interesting finding peace again, and honestly, I can’t help but to say that I’m content with the turn my life has taken this past year. I’ve learned a lot, faced a lot (especially the heart issues) and came out better for it. I guess.. cheers to spring! Let’s see where life takes me now!

Moving on up!

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After the craziness of the last few months, life is starting to take on a bit more normalcy. It’s been one hell of a ride, that’s for sure! For once though, I feel like I am coming out a better, happier more knowledgeable person.  

So my heart (be still my beating heart haha) is doing better. I haven’t had any more major issues beyond a couple shot lived episode a few weeks ago. I also prepared myself and learned how to cope if they do happen, and I have a prescription if things get worse again. So far no worries. Back to basic life for me. (Hopefully my EP was right and it was a short lived thing!)

I however did get quite a bit of anxiety from the whole ordeal. I think having your heart stopped and restarted in the ER will do that for anyone. So I took a first step and found myself a really sweet therapist. It’s nice to be able to really tell someone everything… something I haven’t been able to do in about 5 years. She’s helping me learn how to cope with my illnesses as well as being a single mom (again). I’m glad I took that step, as it seems to be really helping me straighten myself and my life out. She’s given me great advice from how to deal with doctors, (she even found me one when I didn’t like the new one I had) to how to take steps to stop being a doormat for people, to great budgeting ideas and resources for writing and art.

Beyond that, I’ve also been making it a point to write and read daily again. Just to get the creativity flowing. I started feeling more confident with myself just doing that.

Oh! Even managed to go a few miles at the forest preserve already. It was so nice out, and felt good to get active again. Noodle and I are just starting to work on the yard for spring (I’ve got a feeling it won’t be as easy as taking it all down for winter). We’re both excited for the garden this year, as well as planting our flowers! She’s really involved with it too!

Nood has been doing great! Grades are steady in school with good behavior. She really has stepped it up with helping at home with chores. I’m proud of my little munchkin.

I’ve also been able to start reconnecting with friends I haven’t seen in forever! I forgot what having a social life is like! What I’m working on now is finding a club I want to join. I’ve been looking for quite sometime, just can’t decide.

All in all, things are going well. I hope the trend continues! It feels so great to finally feel happy again after all those years filled with doubt and anxiety! Looking forward to Spring!

Have a nice night everyone!

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It’s been a long month.

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It’s been a busy, busy month. As most of you know, I have some health problems. Apparently, in addition to Crohns, my heart apparently has some quirks too.

My heart itself is fine, it just decides to beat excessively fast than it should at inappropriate times. It’s called Inappropriate Sinus Tachycardia (which is part of SVT). It’s practically harmless, but insanely terrifying, especially if you don’t know what’s going on.. which I didn’t for the first few weeks it was happening. I’d be sitting down relaxing, or in the shower, and my heart rate would shoot towards 200.

So this month has been filled with appointments with cardiologists, kidney specialists, and an electrophysioligist. I had an heart study last week, with the hope to pinpoint and maybe to do an ablation if possible (before they thought it was IST).

For now I’m just going without medication. I had tried one, but it dropped my heart rate too low and I need to think on it. I have another appointment with my EP in 2 weeks to discuss. I guess I’m just happy knowing what’s going on, not as scary otherwise.

Beyond that, things have been pretty good. With all the crap going on, I was able to realize what was really important and what I actually wanted out of life. I’ve been spending a lot of time hanging out with Noodle as well as working on projects at home. Now that I have the heart stuff starting to get figured out, I’m going to focus on extra curricular stuff for Noodle and new social ground for myself. I do have to say, thinking you’re having a heart attack a few times, really helps you get over a break up. Haha.

Now it’s just time to weasel out some good swimming classes for the kid, and I’d like to find one of those beer & book clubs for myself. Wish me luck!