Future: A Spoonie’s :Lament






For some reason I thought that this weeks Photo Challenge was the Daily Prompt, and without properly looking at it I went ahead and wrote…. so

I always feel like my future is uncertain…Only because I can’t plant too far in advance.

All of the things that I planned for my future when I was younger never happened, I always felt like I got really close; then everything fell apart and I was never really able to get back on track,

So naturally I began again, and devised a new plan for my future; setting sail with a positive outlook, because now I’m sure that this time I’m going to be successful, no one has that much bad luck.. HA! Future plans foiled again!!

Now I’m in this weird limbo, future unclear, wanting to plan but knowing what happens when I do.

I’m frustrated because I feel so behind when it comes to my peers, it’s hard to plan for a future when I can barely plan activities 2-3 days ahead of time; because I know that any second, any moment by body will decide that it can’t and it won’t get out of bed.

I’m frustrated because (Being A Spoonie Means) :

  • Canceling plans on short notice because I suddenly don’t feel well or my energy is completely depleted
  • Always having a constant level of pain and “dealing with it” (my transplant protocol dictates that I can only have 1 gram of Tylenol a day and no Ibuprofen at all)
  • Deciding whether to be in pain or drugged out on narcotics
  • People always thinking I’m faking
  • Feeling “trapped” in your own body and not being able to do anything about it
  • Realizing that one one will ever “get it”
  • People confusing my physical illness with depression
  • Dealing with people and their expertise. I swear if I hear about another herbal remedy, so fantastic new yoga move, or meditation technique I’m gonna lose it.
  • Feeling like “this is it”. It will never get better and there is a high possibility that it will get worst. This is what my future looks like. So I should probably get used to it.

And because of this my future is an hour from now, then an hour after that. At this point in my life that’s really all I can look forward to..


* The Photo used is actually a sticker created by SpoonieStickers on redbubble… great stuff, go check it out.


Until Next Time,



Copyright © 2016– Random Acts of Snark – Paying it Forward –  All Rights Reserved

Just Another Day




Writing Prompt: Our days our organized around numerous small actions we repeat over and over. What’s your favorite daily ritual?





Everything in my life except for doctors appointments are based on how I feel that day. On a day like today, where I have very few spoons, I woke up exhausted, and I stayed in bed all day long. I did get up this morning to feed my cat, and shift her cat liter and take it to the trash…. that seemed like it took whatever reserve energy I had. And it’s frustrating because it was a relatively nice day out (for a Chicago winter day)  and I would have liked to have gone out and walked… but the idea of even walking the way I feel would more than likely end up with my calling my brother to help me home.

Now every night before I go to bed I have a “schedule of the things that I want to do… for example when I went to bed last night… I had my meals all planned, I was gonna go workout… come home, do some journaling, maybe catch up on some Dramas on Hulu… get ready for my procedure tomorrow.. I good solid plan, that would have kept me busy all day…. so far I’ve done…. the journaling…. I haven’t eaten  anything except for a ton of water (no appetite), I need to get myself together for my procedure tomorrow and hope that I’ll be able to function afterwards…

So the plan is to go to bed early tonight, I have a new plan…hopefully I’ll have enough spoons to get through.

  1. Feed The cat
  2. Clean the Liter Box
  3. Go to the Doctor/Procedure
  4. Lunch
  5. Regional Science Fair to Support my cousin
  6. Pick up Mom from work
  7. Family Dinner
  8. Write of Tomorrow’s Blog Post
  9. Sleep

Then of course there is the backup plan if things are really bad

  1. Feed The cat
  2. Clean the Liter Box
  3. Go to the Doctor/Procedure
  4. Go home and Sleep

I swear it seems like every single day is an adventure (one that I honestly don’t want to take) …. I wish I had a typical day … it would make my life so much easier. But everyday I decide to have a full day… and somedays I have them,I accomplish everything on my list, I go outside, get dressed, and am social with other people….I look forward to those days….


Until Next Time,

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Copyright © 2016– Random Acts of Snark – Paying it Forward –  All Rights Reserved