I’m feeling like I need more
sleep but I’m fighting for more time during the day. Its like my days are
shrinking without my approval. I have to limit my visits because I don’t have
enough strength to get thru more than that now. I’m becoming more and more irritable
and needy. Snapping at people I love. It’s the unfairness of it all. I compare
how other people get to spend their day and I’m not able to. The comparisons.
I’m afraid that If I ‘give
in’ and sleep more then I’ll be forgotten, disappear.
Some people in my life are
upset because they can’t see me when they want to see me. I have limited energy
and time and its hard to get that across.
I don’t want people to take it personally when I have to book a visit with
them a week from now. Its just how it has to work presently. I’m doing the best
I can to balance out MY needs and others as well. It’s a dance that I’m trying
to choreograph and soon others will take that position from me. For now its my
job, with some help from a great website that helps families and people who are
in need like myself. Its called eHope.nu. I highly recommend it.
I wonder if/when I become bed
bound that people will understand more about my limited amount of time to see
them and to also talk on the phone or email/text? It ALL takes so much energy
from me. I wish it weren’t the case but it is my reality now.
I still have things to do, I
don’t want to take to my bed quite yet.
I went to the ocean with a
friend the other day and I realize how important it is for me to be there and
to be in nature period. To do things out there in the world while I can is so
important to me now. I also want to go see some animals I just love so much.
There is a local place that raises animals for many reasons, one being for beef
and for turkey dinners but for other reasons too. I especially love the goats. LOVE GOATS!
They are a wonderful place, Wolfs Neck Farm, and I encourage you all to search out local places in your area and see if you
can buy locally, your beef/chicken/eggs/turkeys/milk etc… Buying local is so
important now more than ever. When you buy local, you keep one more truck off
the road that travels across the country using gas and polluting. Buying local
you support your local community and the money you give them stays in the local
area. It really is a WIN WIN. Plus, I’m hoping that your local farms don’t feed
antibiotics and growth hormones to their animals. I know I personally don’t
want to ingest those things when I’m eating food. I have enough meds in me and
don’t need to add more. Growth hormones could be one reason why breast cancer and
other cancers are climbing high. Who knows?
Ok, enough lecturing for
today. LOL
My point is that my body
craves being near the ocean and trees and the natural world that I sometimes
forget is out there and how nourishing it is. Hug a tree and you’ll know what I
mean. No, really …hug a tree, close your eyes and try and feel the energy of
the tree. Its incredible. I know it looks funny and all, but if you can say….to
hell with what others think, and really feel the energy. I bet you you’ll feel
better after wards.
I’m a tree hugger and proud
of it! J
I was writing the other night
about how my circle of support is getting smaller and smaller and that’s how
hospice said it would get. Its still hard to accept. I need to
realize that some people can’t handle being around someone who is dying. I am
also realizing that I can not make anyone understand how things have to be now
and how I have to spread out my visits. Also how I can’t always do things that
people are comfortable doing. Being busy and avoiding the elephant in the room.
Some people want to just go out and see a movie, or get lunch or do do do…..if
I were to ask them to just sit with me and talk, I don’t think that could be
possible.
I am trying to remember when
I was on the other side of death, meaning when I was grieving for someone I
love who was dying. I was in that spot. I wasn’t as close to some people at the
time but became closer due to cancer and having something in common to talk
about. I still got nervous and still didn’t know what to say. It IS a hard
place to be. What does one say?
Well, what I want to tell
people, is that there really isn’t anything wrong to say. I would caution saying
anything that comes across as advice on how to fix the cancer or how to feel
better or eat better. I know all of those things believe me. I would say to
just treat me like you always have and there will be moments of “oh shoot, I
wish I hadn’t said that”, and that’s ok, really it is. I will probably laugh
and we can laugh together at it all. We are only human and humans make mistakes
all the time. I’d rather someone make a mistake or seemingly say something
wrong….than to avoid me all together.
I was also thinking the other
day that maybe the reason why the “circle” gets smaller as I get closer to the
“other side”, is because its so so difficult to imagine saying goodbye to
ANYONE in my life. I’ve already had to say goodbye to a couple of people who
just cant handle this, for their personal reasons. I still love them and
always will, but I’m not going to try and convince them to keep seeing me the
way I need them to see me.
I decided that I have to put
my energies into seeing people who really WANT to see me and who are willing to
wait a week to see me on my terms.
Believe me, I wish SO much
that I could go out to dinner again, go see an evening movie, go see a band, go
to kirtan at night. It kills me to not be able to do those things. Ive had to
come to some acceptance that night time is not really a time for visiting
anymore. Sad but true. Another thing for me to grieve.
I get reminded of how
different some people think about my situation as I’ll call it…..
I get reminded of my decision
way back in the Fall and how I’ve moved on and others have not. I saw a friend whom
I hadn’t seen since before Christmas. They couldn’t believe that I wasn’t
seeing a doctor anymore and not getting scans or MRI’s or whatever anymore. I
had told this person my decision way back in the Fall and I know it was hard to
take for this person but I was taken aback that they didn’t remember that that
was my decision and to ask me AGAIN and put that judgment on me with disbelief?
WOW!! That was a hard one to hear. I wanted to say….”Where have you been? I’ve
so moved on from there!”. I guess they haven’t? We all have our ideas of what
one “should” do at the end of our lives. I just didn’t appreciate the
overwhelming fact that this person does NOT approve of my decision. I just
quickly moved on to another subject. Made it pretty clear I wasn’t going to go
down that road again, I’m so tired of explaining my decision. So tired.
That conversation made me check in with
myself and see if I still feel ok with my decision and it was a resounding YES!
YES! YES! No doubts whatsoever. Neither choice presented to me was going to be
easy. I DO know I made the right decision for ME. End of explaining it to
anyone. DONE!
Recently I’ve discovered that
drinking water or any liquid that is the same “thickness” as water, is getting
difficult at times, to swallow. I thought maybe it was just me with some
neurotic things happening, but apparently it is quite common at the end of a
persons life. It becomes harder to swallow due to the muscle dying or
atrophying? Its hard to explain or to really know for sure….but that’s the gist
I got from my hospice nurse. So in the near future I may have to get some kind
of thickener for my water so I can take my pills and keep hydrating. I don’t
think I want to discuss what comes after that point. Lets wait till that time
comes to get into all that.
One of my hospice team
workers said that its pretty common for people in my situation to start
drinking heavily or start doing drugs a LOT. I can see the appeal sometimes.
When the anxiety and frustration kicks in or the pain is too much or the
emotional roller coaster is on high speed…..sure, I would LOVE to just check
out. And I’m pretty sure I will do that in one way or another when it all
becomes too overwhelming and difficult to manage. For now I’d like to be as
present as I can for as long as I can. Not sure how long that is but that’s the
idea.
One insecurity came up the
other day when I was being “difficult” and needy. I thought that maybe I should
start taking more and more meds or start getting stoned on whatever vice I have
to do so, so that my family and friends who have difficulty with my irritable side
will have an easier time dealing with me? Why not? I’d be quieter anyway right?
LOL, …oh this is such a journey like no other journey….wow!
I believe there are countless
ways of doing things, countless ways of experiencing life, countless ways of
learning and growing and dying.
I am so very grateful for all
the love and support I DO have around me. I am very blessed. It may not seem like
it at times when I’m complaining or processing as I like to put it, but really…I
am so lucky in so many ways. I smile every day at my cat and my plants that
seem really happy and to all that I am able to do. I hope I thank my support peeps enough. They are priceless to me.
There is still so much good
quality of life here for me to experience. I’m not ready to go yet, not even
close. I’m just having some road blocks to maneuver and some bumps to hop over. But I’m still going forward. Even if it may seem like I’m going in a zig zag
sorta way.
Love one another
