It’s been over a year that I’ve been off work
because of my declining health and quite frankly I often get a little tired of people
asking me if I get bored during the day or if I struggle to find things to do
throughout the day. Then I thought, some people just don’t know much about my
CF or about my daily routines or about the fact that going back to work is not
a choice that I have the privilege of making… my health has made that choice
for me (as much as I’d like to believe that I actually made this choice). So,
I’ve decided to put together a list of things I’d like people to know. Things I
feel strongly about and other things that are just, well - me. I understand that whether people read this or
not, is out of my hands. I haven’t blogged in a long time and may have lost the
interest of some readers. Nonetheless,
I’d like to put these thoughts out there.
·
Mornings are the hardest for me. I’m out
of breath, I spend 2 hours on inhaled medications, physiotherapy and breathing
exercises and I’m usually coughing up so much mucous it makes talking difficult.
So… if you want to actually talk to me, call in the afternoon or
evening.
·
It amazes me how much sleep and rest my
body needs. In a good week I can get up around 9am and finish my meds by 11am,
attend my medical appointments, get errands done, get dinner ready and maybe
even have a visit with my sisters, niece and nephew or go for a coffee with
friends. In a bad week I need to sleep until 10 or 11am. I don’t finish my
morning meds until about 1pm and I get exhausted after only getting one thing
done a day (e.g medical appointments, grocery shopping, taking Bettie our for a
walk or cooking dinner). This is a BIG change from when I was working. I’m
still getting used to the fact that my body works everyday to fight whatever
infection I have and it’s taken a long time for me to realize how important
rest is.
·
Although everyone loves to hear that they
look great, I actually get tired of hearing this. Please don’t think I’m being
conceited but CF is such an inside disease. Although I may have done myself up
with makeup, I often feel like crap on the inside so hearing I look great is not
necessarily what I like to hear because it’s not a reflection
of how I feel. What I DO appreciate is being asked how I’m doing and having the
freedom of giving an honest answer. Having people just listen and show they
care can be incredibly supportive and helpful.
·
There are days when I really struggle to
stay positive. I’m in new territory with my health and I’m learning how to look
on the positive side like I always have. I’m learning that support is something
that helps tremendously. Support and love from family and friends has never
been more important. I hope people remember this.
·
Animals are amazing creatures to me and
they are often where I get my positivity. My life list includes a lot of
experiences with animals including one I got to do a couple weeks ago with a
friend. It was INCREDIBLE! I would highly recommend the dolphin encounter at
the Vancouver Aquarium. I was so impressed and amazed!
·
There are times when I love to lose myself
in a great book, a fantastic movie or a hilarious TV show in order to forget
about my disease.
·
Almost everyday I think about our (James
and I) desire to have kids and I wonder if this will actually ever happen. I
want to believe it will, but my decline in health puts a HUGE barrier in front
of this dream.
·
I never want to be the kind of person who
is defined by their struggles. But at the same time, for some reason I want
people to understand how tough living with CF can sometimes be. I think it’s
because I just don’t look sick, so people automatically assume I’m a regular
person who’s just taking a bit of time off work and who just happens to cough a
lot. Not that I’m not a regular person… you get what I mean.
·
I have the most wonderful family, quite
possibly in the whole wide world.
·
I ’d
love to meet Ellen DeGeneres one day and tell her how much I love her show and
how it’s always been such a great distraction for me. From the many times I’ve
been sick at home on IV or in hospital, the times I was waiting for James to
wake up in ICU after his accident, to the times I simply needed a laugh.
·
There
are many places I’d love to visit such as; England, Scotland, Spain, France,
New Zealand, Africa and also do a road trip through the States and back across
Canada. I’d also like to do these trips free of CF-health worries!
·
I’d
love to go to a live taping of Late Night with Jimmy Fallon. I have a major
crush on him and I absolutely love his humour and his ability to be genuine
with his guests.
·
I
loathe cigarette smoke. It killed my mother-in-law and it was a huge reason why
my loving grandmother developed lung cancer even though she had quit smoking
for nearly 35 years. I don’t understand how people choose to worsen their
bodies just for the feeling they get from smoking a cigarette. If that’s not an
addiction, I don’t know what is. I just
hate watching people throw their lungs away while I do everything I possibly
can to prevent my lungs from getting worse. What a privilege it is to choose
the fate of your lungs versus having that fate decided for you.
·
Having said that, I am so very very VERY proud
of people who have QUIT smoking! I don’t know what it’s like to be addicted to
nicotine, but I can appreciate how difficult it is to kick the habit and that’s
why I am so very proud of those who have quite. Tara Wood you are awesome!!!
·
I
find it funny and irritating when people ask how I’m doing and I respond with
an honest answer such as, “Well, I’ve been needing a lot of sleep lately, my
breathing isn’t great and I’m coughing a lot more”. And they respond with “Ya
I’ve been feeling under the weather too lately. I think there’s something going
around”. This isn’t feeling under the weather. This is CF, which you don’t
have. So please don’t compare yourself with me. But thanks for asking how I’m
doing instead of saying “Well you look good anyway”.
·
Sometimes I wonder how certain doctors or
nurses passed their exams and got into the health care field.
·
I’m
so thankful the doctors, nurses, physiotherapist, dietician, pharmacist and
social worker at the CF Clinic are GREAT at what they do!
·
I
strive to be grateful for everything in my life on a very regular basis. I
really do have so much to be thankful for. But I must admit this is sometimes a
struggle as I get older and don’t have the things I’d like in my life, like
children. It’s something that challenges me and something I think I’ll always need
to work on.
·
I
hope I never become a person that complains about the most mundane things on Facebook.
I’m all about venting, but before you post whatever your complaint is
publically…. Think about who might read whatever you’re posting and think about
how good you actually have it. I include myself in this.
·
I
think I’d like to write a book one day.
·
I
have a serious crush on Channing Tatum… please don’t make fun of me like my
husband does!
·
Nausea and being out of breath are the two
things I hate most in this world.
·
I
admire people who are able to put their worries aside and focus on something
positive.
·
Schmitt
from New Girl is quite possibly my favourite TV character ever… and Phil from
Modern Family… and Cam.
·
In
no way do I think my life is really hard. I mean, I have a great place to live,
I have an amazingly loving husband who I almost lost 4 years ago but didn’t. I
have the most supportive family anyone could ask for. My dog is hilarious and I
love her so much. And I have the
privilege of knowing some of the greatest people in the world (to me). But part
of me feels it’s just not enough. I want more out of life. I want to be able to
travel when I want and not have it depend on my health. I want to have a family
of my own. I want to go back to work. I want to spend the hours I currently spend
on my health each day doing something fun. I want to make a difference in this
world. And most of all, I want my life to move forward instead of standing
still.
Thank you all for reading and for your support.
It means the world to me.
