Sometimes friends, family or people in general
want to know what it’s like living with a chronic illness, or what my hopes and
dreams are, or what I miss most. Here is a sampling of those questions and
answers from my perspective.
1. What’s it like living with a chronic illness?
Well,
I must admit that having somewhat of a diagnosis is nice, but I have to say
that life as I once knew it is gone. I’ve had to go through a grieving process
which I still believe I am in. I have learned the true meaning of “one day at a
time”, sometimes for me, it’s one second at a time. I have had to try to find a
“new normal” and that can at times be really challenging. I don’t want a “new
normal”, I want my old normal. Heck, at this point, I’ll settle for half-way
normal J
2. What have I learned through all this?
I
have learned to appreciate the small things like waking up each morning, I’d
rather that than the alternative! I’ve had to learn that, I am indeed, NOT in
control anymore. I’ve had to learn to ask for help and rely on others,
something I am definitely not used to. I have learned that I can and will live
with this, and do it to the best of my ability.
3. What is the most disappointing news concerning
this illness?
The
most disappointing news is that there is no real prognosis. I have had to do
much of the research on my own as many doctors in my area do not even know what
POTS or Dysautonomia is, much less how to treat it.
4. What do I do to get out of a funk?
When
I’m in a funk, I try to remember that while I cannot control my physical
situation, I can control how I react and respond to it. I can choose to find
joy and happiness in the things I can do. I try not to dwell on the negative,
and sometimes that is so hard. I do admit to occasional breakdowns and many
pity parties where I am the only guest L If I’m really in a funk (what
most of us call a “flare”), I pray a lot, read, listen to uplifting music,
meditate and try to rest through it.
5. What would I like to do if I was not ill?
Honestly,
I’d be quite happy if I could take my teenage daughter to the nearest
Starbucks, have a coffee and a day of shopping. I really don’t like to shop,
but I know that that would be something that she would love to do, and I’d
gladly do anything to make her happy. I would also like to enjoy life with my
family once again. I would love to be consistent at just about anything. I
would love to be able to drive…where I want and when I want. I would love not
to have to rely on others so much. I would love to give Big Handsome a break for
once.
6. What do I miss most?
I
miss doing what I want, when I want the most.
7. What have I done that I never thought I’d do
with this illness?
Start
a blog. I really don’t think I would’ve started one if it hadn’t been for the
hours spent in bed, online instead of out of the house enjoying life. I’m glad
though, all the same. Something else I never thought I’d do after my illness
was going on a cruise. My husband and I celebrated our 20th
anniversary on a Caribbean cruise and are looking forward to celebrating our 22nd
anniversary on an even longer Caribbean cruise this year. I took a bit to get
my meds sorted out, but once I did, we had a wonderfully memorable time
together. Our first cruise was really our honeymoon celebrated 20 years later
as I was in college when we got married and didn’t have the time or the money
for a honeymoon. I must say that it is such a blessing to be on a continuous
honeymoon for 20+ yearsJ
8. What I think about the majority of doctors I
have seen?
I
think the majority of doctors, save my current GP are all complete idiots! I do
have some bit of respect for the knowledge that they incurred through years of
med school, but somehow, I find each and every one that I’ve seen to be
severely lacking; whether it is in compassion, general bedside manner or just
plain knowledge of disease and the body. I truly believe that everything
happens for a reason. We are sick because there is a reason, an underlying
condition. I think all too often doctors are only knowledgeable in treating the
symptoms and not the illness as a whole, not treating us as a whole. If we don’t
fit into their little box, or their med school books, well, we are SOL! It is
really unfortunate and has left a really bad taste in my mouth.
9. What is the biggest adjustment I’ve had to
make?
The
biggest adjustment I’ve had to make is to learn to rely on others. I like doing
things my way and I like being in control. I think someone upstairs had something else in mind for me J
10. My favorite show?
I
used to love medical shows, like House and the like. Now, I can’t even watch those
anymore. I like to watch benign shows now; shows that I don’t have to think
about, like the shows on HGTV. Since even little things set me off, I find it
hard to watch murder and mayhem, medical shows, reality TV, etc. I admit that I
do like to watch TV drama series though. I enjoyed “Brothers and Sisters”, that
American Teenager one (can’t think of the name), British shows like, Bramwell,
Downton Abbey, Doc Martin. When I watch something, I just want it to be numbing
and I don’t want to have to think too much about it. Lame, I know, but when I
have time to watch anything, it’s usually right before I go to sleep, so I don’t
want anything too stimulating.
11. My favorite song?
I just discovered Pandora and love it. I have
new found favorites such as, The Fray, Coldplay, Daughtry, Nickelback. I guess
they aren’t really new found favorites as I’ve always loved their songs, just
didn’t know who or which band played them.
12. My favorite saying?
I
have two favorite sayings: This too shall pass which I have tattooed on my inner left wrist
to remind me of my late, beloved mother (she passed away 9-14-12). This saying
is something she would always tell me when things got tough. She was a tough
woman. A woman I admired and loved with all my heart. A woman that fought for
seven long years after a botched hernia surgery. She went from being a
relatively healthy, always vibrant woman (married to my father for almost 50
years, she passed almost one month to the day before their anniversary) to
being an invalid on a feeding tube with only one lung; all because a doctor
screwed up (I’ll have to save that story for another post). The other favorite
saying is of course where I got the title to my blog from. It just came to me
one day out of nowhere. I might be helpless at times, but I am never
hopeless. Quite frankly, that is my mantra
these days. With the love of Christ, I am never hopeless, and that is such a
wonderful truth and feeling all rolled into one.
13. What do I do as far as work and career?
I
began a career in Elementary teaching after college. I only taught a short
three years before Big Handsome and I decided to enlarge our family. Since then,
I have homeschooled my two children, now teenagers in high school. I’ve always
quasi joked that had I had a job and my children went to school, I would’ve had
to quit and homeschool them after my diagnosis anyway, so I skipped that whole
step. I thoroughly enjoy teaching my children at home and wouldn’t have it any
other way. They make me so proud!
14. Something you might not know about me?
Something
many might not know about me is that I would love to one day open a coffee
shop/bookstore. I would love it to be something along the lines that
you see in movies, where there are shelves and shelves of books, an armoire
with board games, and velvety couches and chairs all around and people can
just come in, relax with a good book, and a great cup of joe!
15. Something I really miss?
I really miss driving…just going where I want
to go, when I want to go.
16. It bothers me
when people say…
It
bothers me when people say “Wow, you look great, have you lost weight?” First
off, I’ve never really been overweight, so what are they trying to say?? I do
take the compliment graciously, but in my head I’m thinking…”If I felt as great
as you seem to think I look, I’d be on top of the world!”
17. The biggest surprise for me
One
of the biggest surprises to me is that there are so many doctors out there that
don’t know about POTS or Dysautonomia. I mean, how are there thousands of us on
line with these same issues that nary a doctor can figure out? Boggles my mind!
18. What I’ve learned so far
I’ve learned so far that you have to be your
own advocate when you are diagnosed with an invisible illness. When there are
few doctors that know anything about your illness, of which there are few, you
have to research on your own and find things that work for you. I’ve learned
that a good support system is essential and that friends and family might not always
understand, but there are so many sites out there online with people just like
me. That is such a comfort.
19. What I want most in life
What
I want most in life is to gain control, or as much of it as I can with concern
to my health and quality of life.
20. What I look forward to
I
look forward to beating the odds!
I
might be helpless at times, but I shall never be hopeless J
