Tag: making plans

Keeping Up With the News, and a Bucket List

~ Olivia Hill ~ Leave a comment

I’ve been disconnected from current events lately. I care about how the world is doing, not just our country, so it’s going to require some significant energy to schedule time to read the world news from good sources. Part of the difficulty of my health is that I have far less energy (or spoons, for my Spoonies out there), and sometimes that makes it difficult to find the mental fortitude to handle the stress of the news; whether it affects me or not. I have to protect my mental health so that I can get up every day and hopefully at some point do something for other people. Lately, our world news has been heart breaking and I have to save the “spoons” to handle it.

With this in mind, I think I’ve got to schedule a small amount of time daily to get caught up. Another difficulty is that I’m just busy. I have a job daily, and since it’s a physical job I get worn out easily; the rest of my energy goes to cleaning my apartment, taking care of our cat and my two snakes, basic hygiene, and an attempt at having a healthy social life (which includes making gifts for babies of friends and family because that makes everyone happy).

While I think about all of this, it makes me think about what I’m capable of, what I don’t want to miss out on, and what experiences I’ve had that I didn’t think I’d ever have, or would never have again after getting sick. With all of this in mind, I decided to make a bucket list. It’s going to be long, and have all the little things too. If you make it through it, or if you don’t, comment with your own bucket lists! I want to see what other people value in life experience, and what people think is interesting. Especially, if you’re a Spoonie or even if not, let me know what experiences you’ve had that you’re not sure you’ll be able to have again, or things that you wish you could do again even if you know you probably can’t. I hope some people comment because even if in the chronic illness community there’s a feeling of “there’s so many basic experiences I’ve lost” or “no one will care what my bucket list is because I’m so limited”, it’s also important for us all to know and remember: your life matters, what you do, what you can do, and what you want to do, matter. It doesn’t matter what it is, or how it compares to someone else; all that matters is that you do something with your life, even if all you can do is think thoughts, and read blogs from twenty-something college students. You’re alive, you’re making it through one moment at a time, and that has importance.

Here’s my bucket list:

  • Learn to ice-skate, at least well enough to not have to think about it too much.
  • Get my own bow and crossbow and practice archery more (get a bullseye 90% of the time)
  • Learn to use, clean, and fire a handgun proficiently for sport in a range. (I’ve done this a bit with a marksmanship class, but I’d like to go for sharpshooter status)… (I am pro gun for sport or appropriate self defense, but I feel regular background and mental health checks should be required)
  • Learn to crochet
  • Learn to make my own clothes
  • Learn to tailor clothes
  • Learn at least two more languages fluently (I have had introductory lessons on ASL, Russian, Spanish, Japanese, and French, and would like to learn more at that level but I do want to be fluent in 3 languages)
  • Learn to paint and draw at a higher level, and sell a painting
  • Go on a haunted/historic tour of America
  • Run my own Etsy store
  • Have kids
  • Get married
  • See a panda in real life
  • Gallop on a horse again
  • Visit Japan
  • Visit New Zealand
  • Write a book
  • Visit the grand canyon
  • Do a flip
  • Do an aerial
  • Do a butterfly twist
  • Drink Armagnac
  • Dress up in clothing for the era of a play/show I’m seeing (a plan made my one of my close friends that sounds like so much fun)
  • Have my own greenhouse
  • Choreograph a dance that I feel comfortable sharing with people
  • Learn to play guitar relatively well
  • Visit the Harry Potter part of Universal Studios
  • Go on a roadtrip with my best friend and just go wherever we want without too much planning (this needs more funds than I have at the moment)
  • Have a job that pays enough where I don’t have to worry about whether I have enough money to pay bills if I have a surprise expense
  • Learn how to dance en pointe
  • Learn to hold my breath for 5 minutes (I’m told my grandfather, who was a navy Frogman, could do this)
  • Get my hair dyed blonde
  • Learn to skateboard
  • Learn to snowboard
  • Write my own song
  • Own my own piano
  • Learn to play the cello
  • Get flexible enough to do the splits both ways

I think that’s everything for now. There might be more later, there might be less, or I might be forgetting something. But maybe that’ll tell you all a bit more about me, and reassure you that bucket lists don’t have to be extreme, dangerous feats like skydiving. It’s your life; set your own goals, ones that make you happy.

Time, Energy, and Changing Plans

~ Olivia Hill ~ Leave a comment

Sometimes I forget that I have chronic illnesses. I’m incredibly lucky to be able to say that, but it can become a problem.

When I’ve put in the work, and planning, and gotten a good day (or few days if I’m lucky) with no health problems…. eating what I want without enzymes, doing what I want and not feeling tired, no dizziness or extreme fatigue, no stomach pains, no muscle or joint pain, no episodes of extreme hypersensitivity…. I forget. Being sick is my normal, so when it doesn’t happen my brain gets excited and forgets so that I can plan all of the wonderful things I want to do.

So I call/text friends and family and make plans. I offer to work extra days at my job; which is a highly physical job and fast paced so it takes a lot out of me while also keeping me healthy. I basically over-book myself. That’s what happened this past week.

Getting my YouTube channel started, making plans with friends, cleaning the apartment completely, all while it was a difficult week at work because the steam in the building was shut down and I work running a giant industrial washer sanitizing supplies like carts etc… proved to be too much.

The steam shut down took all of my extra spoons because I was working in freezing conditions and constantly covered in water or at least had soaked socks and shoes. Along with that, I misjudged the time needed to do some things and lost sleep.

Postponing and then, for another reason, having to reschedule plans with a friend was one consequence. I got lucky and another friend postponed plans which gave me time to rest. Even so, by the time I got to Saturday, a day to visit museums in Cleveland with my dad, I was feeling the week. It was a great day, I saw a lot, but not as much as I wanted. I had to head home early because my body was just done.

Luckily I have an understanding father who didn’t mind making plans to come back another time.

Something a lot of people respond to Spoonies postponing, canceling, or cutting short plans with is anger, or disappointment, or even questioning whether we really want to be there. It’s frustrating and can really make a person want to never make plans with anyone again just to avoid it.

The solution I’ve come up with is to just not give a damn. If I have to do something for my health, and I’ve been honest and upfront with my friend, family member, or boss about my inability to be there, then I have done what I can. There’s no sense in beating myself up when I’ve done nothing wrong.

As Spoonies it’s our job to advocate for ourselves because many times no one else will. It’s difficult, of course, because advocating takes energy. Sometimes the spoons to explain in detail that you don’t dislike a person, you’re just genuinely exhausted, just aren’t there. But here’s the cool thing: it’s a great way to find out who’s worth having in your life and who isn’t.

If someone doesn’t understand your needs, or isn’t compassionate towards you, then maybe they’re not someone who needs to be in your life. If you can’t cut them out for whatever reason then remember that you haven’t done anything wrong. Don’t apologize for doing what you need to be healthy. Apologize for any inconvenience, apologize for changing their plans or schedule, but don’t apologize or feel bad for making healthy choices.

We cannot expect, in a world full of people with no health problems, especially in a country that has a culture of “fix the symptom, take pills, postpone the bad feelings” instead of promoting true overall heath with lifestyle changes, that everyone is going to understand that you’re not jerking them around. That you genuinely need time off to sleep, even if it feels like all you do is sleep or sit.

No one can tell you what you need. You’re the only one living in your body and the only one who’s stuck with it for your whole life. You’re the only one who gets to make decisions about it.

Side note: If you are in a situation where you feel like someone has taken away your choices about your own body, please seek help. Hospitals are equipped with staff who are trained to handle that kind of thing. When they ask if you feel safe in the home or even if they don’t ask, in America it is a patient’s right to request a private meeting, without a family member present and that is a good time to say something. Police also can help and have access to other longterm resources.