April 14, 2017

#spoonie: Learning to Sit Down

    I have these little ticking thoughts in my head quite often.
“If I run a load of dishes tonight there will be less to do in the morning.”
“I haven’t moped this floor in a while.”
"These things need to be put away.”
“These things really need to go somewhere else.  If I clean out the tea cupboard I could fit them up there.”  
    A lot of the times it is chores.

    And there will be no end to the chores.  It is especially bad if someone is coming over.  Now cleaning the home and keeping it organized are good things, but there will always be more work to do.  And my body can’t take too much work at once.  I have to remind myself to sit.  I have to remind myself to rest.  But there is always that ticking in my head.  That thought in the back that thinks I could do just a little more.  Even after a full day where I am so tired and exhausted.  My body is aching and my mind is slow.  I think about doing more work.

    Sometimes it is comical the way I have to tell myself, “Lili you are a spoonie; sit the fuck down.”  Luckily I have good friends that understand and don’t hassle me about needing to rest.

    Maybe I should try affirmations for the thoughts.  Work to reprogram my mind.

    Do you ever have this problem?  What do you do?

Till Later,
Lilian A. Brennan

March 24, 2017

How Do I Learn about Bills & Laws?

    As a teen I would ask adults "How do I learn about the laws I need to follow?"  I did not get helpful answers.  In fact the answer I remember most often getting was, "You wouldn't understand them."  Gee thanks adults.

    Now I figure they gave me this answer because 1) I was still a minor, 2) I was a girl, 3) they did not understand the laws or how to learn them, or and most likely 4) a combination of the last three and other aspects that I am not yet aware of.  

    For a long time I have only had access to the information that the news gives me on bills that are coming out and often I don't see them linking to source material.  But in the last year or so I have finally figured out how to find that material.

March 9, 2017

Things I Love Thursday: Sporadic, but Still Here

Image description: A star filled space scape with the words, "Things I Love Thursday," made visible by sparkles that are spreading out from behind the words.

    It has been a while since I have posted a things I love Thursday and I have a had a few brilliant moment that have inspired me to share so here goes with the gratitude!

March 1, 2017

#spoonie Learning to Say No and I Have To Stop

    I am a gamer.  D&D, or any table top RPG I have gotten to try so far, are exciting and fun.  Even the LARPs are things I have loved.  But when it comes to activities with other people like that I am pretty terrible at saying when I have to stop.  I have been fairly good about saying when I can't do something because of the dyslexia.  For example, the game is done for the night and we have all leveled up.  "Can't level my character right now guys I can't read anything."  But as for actually stopping the game when I need to either because I need to take an emotions break or because I am running out of spoons all together.  I am pretty terrible at that.  And this last Saturday kicked my ass.  Hands down.   I didn't mention that I needed to stop and sleep, because we were in the middle of a dungeon.  Hell I knew I needed to at least take a break before the dungeon because of emotions and potential bleed, but I didn't say anything.  So by the time we finished I couldn't even sleep for a few hours because I needed to wind down.  I then slept for most of the next day and a half.  I couldn't do anything the next day.  I had to just go back to bed.  Even after my sleeping for a day and half it took a few days before I recovered.  I am still not sure how recovered I am.  I am really bad at this.

    I know I have build up this bad habit due a lot in part to people expecting me to push myself.  Not just shit people either.  You know those abusive and toxic people that you meet that expect everything out of you.  No not just them.  The whole society seems to push this notion that we should all push through everything.  It is even in the narrative.  The starving student.  Work your way through college on nothing but redbulls and ramen noddles.  That ain't healthy.  And you are going to do damage to your body in the processes.  I have met older people who lived the hard life and warn against pushing yourself too hard and spreading yourself too thin.  But in the work place that is what is expected and even among friends.

    I have a better friend group now.  but even then you can't just erase a lifetimes worth of the pushing yourself narrative overnight.  I need to actually learn that it is okay to stop and take care of myself.  But I am not totally sure where to start and I am not sure if I even trust enough to let the people around me know when I need it.

    So here is a question to all the more expedienced spoonies out there.  Any advice?

Please excuse the messy writing style and grammar.  Just sort of throwing my thoughts on the page haphazardly.  If anything doesn't make sense just ask.  Dyslexia makes for some interesting mistakes now and then.

February 18, 2017

Learning to Accept That I Only Have So Many Spoons

    I am not okay.

    The last few weeks and really this whole year so far have been really hard on me mentally and physically.  I have had more than a few days where I have had so little energy or been in so much pain that I really couldn't get anything done.  These days have forced me to start accepting that yes I am a spoonie.  And I am not so good at planning my energy.  

    Planning my time and energy has always been an issue for me.  But on top of that is overestimating what I will have the energy for.  This is probably due to knowing that other people can do that much and having people rub that in my face.  It can be really hard to turn off the internalized ableism that is playing over and over again in my head.  It also does not help that my metabolism is so high that I can be fine and energetic one minute and suddenly famished or drained the next.  

    I feel like I am a lot luckier than a lot of the spoonies I know.  I usually have more energy than them and I am usually stronger.  I am not bed bound as often as some others.  But my bad days can hit several at a time and like I said my metabolism makes it really difficult to tell how long I will have energy.  I need to sit down and reevaluate my goals and start portioning out the energy I should have and not the energy someone else should have.  I also have to account for the fact that I have a reading disorder and that means it can take a lot longer to do things.  

    And even now my mind is resistant to accepting that yes I am a spoonie and that I need to be more careful with myself.  I always have this fear that I don't belong somewhere.  I am always afraid that I am not wanted.  It is complicated, but health and mental health is like that.  It just ain't simple.

    Tata for now.

 Love,
Lilian A. Brennan

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