As I “struggle to juggle” so many things this month to get
ready for a major family vacation to Europe, complete three big design
projects, work on my own projects that are so important to me in the studio and
my business, deal with the early stages of getting our house ready to put on
the market, face one last surgery upon my return as a result of the ongoing
double mastectomy from breast cancer in 2011 all while dealing with lower
spoons, pain, migraines and other issues than even normal I am almost glad to
have the distraction of once again taking time out to write for Invisible
Illness Week.
That old familiar feeling washed over me in the past few
weeks of being completely overwhelmed as well as feeling judged by others,
which I thought I had mostly overcome or at least the judgment part. A few years
ago when I put myself out there about my illness and started this blog it was
because I had reached a point of strength where what others thought about me
was no longer that important. I wanted to reach out and let people like myself
know they are not alone and they do not have to hide. But I think it is normal
to revisit these feelings from time to time once you reach that point as I
have. Especially when people make comments to me that do not sync with their
previous attitude of understanding where I am coming from and it hurts or takes
me by surprise. I think when people see me at times of functioning as “normal”,
even if they understand and know I have such an illness, they may
subconsciously forget. Perhaps they get used to what they see or feel is “my old self” and they think you are either better or getting really good at
ignoring your illness so you no longer have the burdens you once did. There is
nothing worse to me when I actually have to remind them that no…I really
sincerely cannot do anything today. I really do have to take care of myself and
I do not have a choice. This is not often but it seems since this past winter
and spring it happened on more than one occasion and left me just a tad battle scarred on the heart. And that is something I obviously want to avoid because
it just contributes to my health in a negative way.
I started off this late spring and summer having a few more
spoons to enjoy getting together with friends and family, which was really
nice. But as the summer moved along into early fall and the work and other
obligations started to pile up, my spoons began to waiver in quantity. I had to
cancel several plans in the past month that I was really looking forward to.
But that is just how it is. Most of the time I can live with that “background
noise” I mentioned in a much earlier blog from 2011. But I also know if the
background noise is getting too loud meaning my pain, fatigue and other symptoms
are starting to be more pronounced and I know I have to be extra careful. I have to
have the energy to get through work and the basic things so that I do not
become sicker and wind up in bed or not being able to do the big things my
family and I have planned for so long-like this trip together. And planning
such a big trip with my illness and all the responsibilities that come with it
has me a bit snowed under despite months of planning, making lists and
research.
So…other things are just going to have to take a back seat
for a while so that I can get the most out of this trip and give myself the
gift of peace of mind that hey, once again, if I am upsetting anyone due to my
lack of time and participation that is just going to be the way it is. Those blogging
or joining invisible illness week for the first time might be thinking…how am I
doing all of this? I can tell you it is not easy. About three years ago, if you
had told me I would be managing things a little better at least for now, I may
have not believed you. And I still have a long way to go. So if you are joining
me now please take heart…this is where I am now. Does not mean I do not still
spend those days in bed or those weekends in my pj’s resting and working in my
studio just to spare a few spoons. I just know well enough now what it is I
absolutely have to do to participate best I can in my life. And take care of myself…without feeling selfish. Because as I
originally said on this blog when I started it, if I do not, I am no good for
anyone else.
I choose to: “LIVE MY LIFE”.
Best Regards,
MK
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