Acknowledging I Can’t Do It All

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So I’m one of those dense people that will damn near kill herself, just so I can convince myself that I felt a little bit normal.. at least for a moment. Especially when it comes to my heart. My broad diagnosis is Autonomic Neuropathy, tack on Inappropriate Sinus Tachycardia and Postural Orthostatic Tachycardia Syndrome and I’m a big bag of fun.

I take care of myself for the most part. I up my salt intake, stay super hydrated, exercise to the best of my ability, the works. Sometimes though, it’s just hard to admit that I can’t just do everything that I used to be able to. Hell, it’s hard to admit that somethings are just different. 

A great example is temperature regulation and sweating. I have a super hard time regulating my body temperature, and when I sweat, I sweat A LOT. This past summer, I decided to take the kids to Summerfest to see Reverend Horton Heat. It was a partly cloudy, 75 degree day, and it was time for the kids’ baptism by fire into rockabilly. I was psyched. We got there, and by the time we got halfway through the park, I was overheating. It wasn’t hot, it wasn’t even particularly humid, but I could feel the sweat beading up on my forehead and on my back.

Walking through the park was starting to fuck with my heart rate, so once we got to the bleachers, I sat down for the show. Despite sitting, getting my heart under control.. I continued to sweat. By the end of the show I was soaked. By soaked.. I mean drenched. I looked like I had jumped in the lake. Talk about embarrassing. My face was beet red, I was burning up, and all because my body couldn’t control itself. We spent the entire ride home with the kids chattering, and with me beating myself up inside my own head because I stopped to by myself an over priced DRY shirt.

So yes, I have a hard time accepting all of this. Especially the symptoms that effect my day to day drastically. I’ve had a decade to get used to all of the Crohns Disease symptoms. I guess the heart shit is just more.. fresh? One of the things that really gets to me is how it effects my outdoor activities. Especially my yard work.

It sounds kind of lame, but I thoroughly enjoy working outside in my yard. Whether it be mowing the grass, or weeding my garden. The last couple of years, it’s just gotten progressively more difficult.  I mean, when I first started gardening, I used to be able to dig up my garden bed, by myself in a day. Add the fresh dirt/manure/etc wasn’t a huge deal, and I could plant everything by myself as well. Mowing the lawn? That was something to be done with a couple of cold beers set off to the side. Raking in the fall? More beer and a fire at night to burn it all. (Sidenote: there’s no leaf pick up here, and there’s a no burn law – so I burn at night because.. my yard. Eat me.)

Now, digging up my garden and adding new dirt is a two person job or it takes me all week. Planting, I still manage to do by myself, but it puts me on my ass for the rest of the day. Mowing the lawn? This was my heart rate: Screenshot_20191015-120436_Fitbit.jpg

.. and I have a relatively small yard too. It only takes me half an hour to mow it. There’s no beer involved anymore, just two bottles of water. So that leaves me to raking leaves.

Let me precursor this with a little information about my next door neighbor. I share a driveway with a very lovely family, and the father in this family has very nicely tolerated me for a decade now. He helps me out from time to time, and I like to think that he’s adopted me even though it’s much more likely that he just thinks I’m a moron and he doesn’t want me to die some preventable death. It’s hard to tell as we don’t speak the same language, much as we try. His house and yard is very nice. He is super neurotic about it. Now, my yard isn’t horrible, and I like to plant flowers and fill my bird feeder, but I also don’t cringe that hard at the bald patch in my grass by the front door. His yard makes mine look like a dumpster, and unfortunately for him, my two gorgeous maple trees that just dumped all of their bright yellow leaves onto the ground? Part of that ground includes his driveway and yard.

My poor neighbor has been out with his leaf blower every day, blowing the leaves from my trees off of his yard, driveway, my driveway & walkway, both of our drainage ditches back into my yard (he’s also known for shoveling my walkway in the winter when he thinks I’m not looking, much like he unclogs my drainage ditch or fills my car tires).

I know it bothers him. I know it does, and I feel horrible. Jon hasn’t been able to handle it with his work hours, and then of course we got a random 4 inches of snow on his day off. (because who needs an Autumn when we can hop right into Winter riiight?!) and while I handled the first round with the mower, I haven’t raked because.. well. I know I won’t be able to handle it this year. I know I can handle some of the raking, but when I say there’s a lot of leaves, I mean… a metric fuck ton. Like a good 3 inches of leaves covering my entire yard.

… and I’m not ready to just hand over the fucking reins to Jon or someone else and admit that I can’t handle taking care of my own lawn despite the fact that I stay home. It’s my god damn yard, fuck off. 

So I spent sometime online just searching for alternatives. From mulching attachments for the mower, to leaf-grabber-thingies to baggers. What I ended up buying was a push yard sweeper. It’s similar to what I’ve used up on my Dad’s property behind his atv. It essentially uses a brush to sweep yard debris into a bag which to empty when it’s full. It isn’t perfect, but it’s less work than raking. I’m excited, it should be here by Monday, and I plan on tackling the yard on Tuesday barring more snow.

However it occurred to me, this was my first purchase I’ve made purely to assist myself because I couldn’t just do something the same way I used to anymore. I guess it’s the first time I’ve admitted defeat in a way, instead of letting myself use my stubbornness to figure out a way to complete a task. I don’t know, it’s an odd feeling. I guess I’ve avoided this moment for a decade plus and now my brain isn’t quite sure how to process it.

Either way. At least I won’t have to listen to the leaf blower every day now.

 

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.

 

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.