My 35th birthday is next month and I usually love
celebrating my birthday, but I am having a really hard time this year. It’s not
that I don’t have anything worth celebrating - I am extremely grateful for
my husband who is truly my best friend,
my wonderful and encouraging family, those few loyal friendships that are
steadfast no matter what the years throw at us, my pets whom I find endlessly
entertaining, the list goes on. Although I am not where I thought I’d be at 35,
most days I am able to find peace with my circumstances. However, finding ways
to celebrate when you’re ill is tough. There are so many things I want to do,
some that seem reasonable for an average person – ice skating, going to a
movie, riding the carousel and using the paddle boats at the park, taking a
cooking class, bowling with friends – and others are over-the-top – driving to another
state for a weekend getaway, flying overseas, going on a hot air balloon ride.
The thing is, whether I were to choose something reasonable or extravagant, it
wouldn’t matter. My body won’t allow me to do either one.
Anyone who knows me knows that I love food, so every year I
try to pick out someplace special to have my birthday dinner. Sometimes the
restaurant is on the fancy side, but often it is just a place that is known to
have good grub. But even going out to eat when you are ill can be an ordeal.
This year I have been considering Hayes Barton Café in Raleigh because I have
never been there and I am in the mood for some yummy comfort food (hello,
meatloaf!) and a big slice of cake. In order to go to a restaurant,
particularly one I have never been to before, I have to consider whether there
is close parking and decide if I should plan to use my wheelchair the whole
time or leave it in the car and only bring it out if needed? Can the restaurant
even accommodate a wheelchair? Yes, most restaurants say they are ADA
accessible but were you to actually try maneuvering a wheelchair in there
during busy hours you would find out otherwise. Do I need a reservation? If
they don’t take reservations (which is the case with Hayes Barton), are they
going to be so crowded that I will have to stand in line to wait (cue the
wheelchair)? Is the restaurant going to be too noisy or the lights inside too
bright? If either one occurs, I could end up with a migraine attack that will
leave me unable to communicate or walk.
I plan to bring my sunglasses just in case. Should I plan to eat dessert
there? I would really like to because that is part of the birthday experience,
but am I asking for too much by hoping that I won’t have a migraine or
post-prandial episode? I’d like to walk around the streets a little after
dinner to look at the shops and restaurants and houses in that neighborhood,
but even a five or ten minute walk could be too much, and I may not know
whether that’s the case until it’s too late.
Oh, did I mention I also plan to have a birthday lunch with
my family, so I need to make these considerations times two!
Some of you may be wondering why I would choose to go out to
eat if it is so much work and why I wouldn’t just pick something else to do for
my big day. Well, to be frank, there aren’t many options that are less
complicated or less work for me (sans sitting on my butt at home) than going
out to eat. I could ask my parents if they would mind hosting a dinner at their
home, but we have family dinner there most Wednesdays and that is sometimes the
only time I leave my house for the entire week, so I would like to do something
special for my birthday. I have racked my brain trying to think of another
activity that I can do on my birthday that would be feasible with my
limitations – maybe bowling, but the lights and noise in a bowling alley are
surprisingly in-your-face. Movie theaters are much worse in that regard. How
about miniature golf? Well, in the fall or winter, I might actually be able to
handle this activity but I unfortunately can’t stand, sit, or walk outside in
the summer for that long, which means that going to a park (which I also was
really considering) is out of the running as well. I attended a block-printing
workshop at a local indie store a couple of years ago and while it wore me out,
that was actually something that was feasible for someone with my limitations.
Unfortunately, I wasn’t able to find any affordable one-day workshops or
classes that fit the bill this summer. Most classes, such as sewing, pottery or
cooking, aren’t really the best choices for me because of the amount of time I
would need to be sitting or standing. Most days I can only sit for a couple of
hours at a time before needing to lie down. I can only stand in one spot for 10
minutes before I should sit. That is the reality, and it sucks. I push myself
on this at times, particularly when I am with other people, because I don’t
want to appear weak and I don’t want to draw attention myself. But I do pay the
price for those times when I don’t allow my body to rest. You may notice me
shift my weight from foot to foot, or lean up against something. I am trying to
get better at letting my friends know when I need to sit or lie down, but if
you happen to notice me leaning on furniture or my eyes becoming glassy, please
encourage me to rest.
Even if I decide to take a chance on an activity (I have
seriously been considering saying screw it to my body and attempting to see a
movie or go bowling anyway), actually making the plans can be problematic. Some of you may be nodding your heads in agreement, given how much I have cancelled on you over the years.
Adjusting to the unpredictability of these illnesses continues to be one of the
hardest things. Yes, every day brings some pain and fatigue, but is tomorrow going
to be a day that I’m stuck in bed – I won’t know until the time comes. I can be
fine one morning, and be completely unable to walk to the bathroom on my own by
evening. Occasionally, I can point to a trigger or a cause for the increase in
symptoms, but most of the time it just happens with no rhyme or reason. This
makes it challenging to make and keep plans. I would like to send out an
invitation to all of my friends letting them know that I will be at such and
such bowling alley from 2-4 PM on this date, drop in if you can. But the truth
is, there is a really great a chance I may not be able to attend my own party.
So I keep my circle tight, mostly just family, so that if I have to cancel or
if I have an “episode” both of which I often do, they will understand.
Unfortunately, this can make my world feel terribly small at times.
This post wasn’t meant to be a pity party. I am writing it
with the hopes that someone will read it and gain a better understanding of the
challenges that individuals with chronic illnesses face, particularly on
special occasions. As far as my birthday goes, I’m not too worried. I have
plenty of time to find little ways of making it special, and James and my
family always go above and beyond to make sure I know I am loved. I read this
blog post last night when I was looking for someone who could relate to my
birthday blues, and I really appreciated the way this woman found pleasure in
the smallest of details: https://medium.com/@srachel_m/celebrating-while-sick-fc2cf09b7716
If you stuck around to read all of this, you’re awesome.
