Last week’s blog admittedly
reflected some of 2012's frustration and negativity in our life. Sometimes that
happens and in 2012 it seems it happened quite a bit. I spent the first 15
hours of the new year in bed and the rest of the day was a wash as well. Yet
I'm okay with that. You see, I have Meniere's Disease and sometimes it wins. I
promise that this is NOT a poor me and I will get to my point.
As a person who aims to be self
sufficient it's important to acknowledge that I have Meniere's disease. Meniere's
disease is most frequently diagnosed during middle age though I've had it quite
a long time. Meniere's disease is an inner ear disorder. It is not well
understood, has no known cause, is unpredictable and often what I consider
'invisible'. Attacks or episodes of Meniere's disease often start without
warning. They may occur daily, or as rarely as once a year. The severity of
each episode can vary.
Meniere's disease usually has
four main symptoms: Drop in hearing, Ringing or roaring in the affected ear or
ears, Pressure in the ear and Vertigo.
1. & 2. Hearing loss may
occur during an attack, in fact I believe it generally does. In most cases the
hearing loss is only in one ear as Meniere's most often affects only one ear
but it may affect both ears. When Meniere's disease occurs in both ears it is
referred to as bi-lateral, this is what I have. Generally speaking a person's
hearing tends to recover between attacks but gets worse gradually over time
with Low frequency hearing being lost first. At this point in time I am
essentially deaf in one ear and slowly losing the hearing in the other ear.
However, my ears can also be overly sensitive at times making any sound
intolerable. The roaring or ringing in the ear known as tinnitus is equally
difficult and has prevented me from sleeping on many a night as the silence
seems to amplify it.
3. A sense of pressure in the ear
is also common and though most ear doctors have said it should not cause pain
it often does. Just as flying or driving over the mountains, ear infections, or
even swimmers ear can cause pain due to changes in pressure within the ear.
4. Severe vertigo or dizziness is
the symptom that causes the most problems in most people. People who have
vertigo feel as though they are spinning or moving, or that the world is
spinning around them. I continually feel as if I am moving, often feel as if I
am falling and lately I also have a feeling of rocking or bobbing as if in a
row boat during a really bad storm. Severe nausea, vomiting, and sweating often
occur during a severe attack. Symptoms get worse with sudden movement and the
person will frequently need to lie down. This is usually true and I generally I
try to sleep through this. Typically The dizziness and feeling of being
off-balance will last from about 20 minutes to a few hours though I've had
longer lasting episodes and multiple episodes in the same day.
Other symptoms can include:
Diarrhea, Headaches (it is being found in studies that many with Meniere's also
suffer from Migraines, myself included), Pain or discomfort in the abdomen, and
Uncontrollable eye movements. There are also repercussions from medications of
which there are actually very few. Primarily I am given Water pills (diuretics)
to help relieve fluid pressure in the inner ear and Valium to help reduce the
muscle/tissue contraction in my ears. The valium also helps to ease the Nausea
a bit. Diuretics when you live a loooong car ride to anywhere suck and Valium
of course can be addictive and causes drowsiness.
Other changes that are
recommended to help with the symptoms and keep you safe include: a low stress
environment, resting during severe episodes, a low-salt, low caffeine diet,
Avoiding sudden movements, bright lights, TV, and reading during attacks,
because they may make symptoms worse. Uumm yeah I don't really always follow
orders too well...boredom can and does sometimes take over after you've spent a
day or two in bed resting but haven't been able to sleep.
It is also strongly suggested
that one Avoid activities such as driving, operating heavy machinery, heights
and climbing until 1 week after your symptoms disappear as a sudden dizzy spell
during these activities can be extremely dangerous. It is recommended that I
basically consider myself fully restricted from these activities and I
generally don't do them. By the way that Climbing bit can and often does
include stairs depending on how steep they are. You may also need help with
other basic things like standing and walking when you lose balance during
attacks.
Meniere's comes with the
possibility for all kinds of secondary injuries. Bumping into things and falling is common. I now have a rotator cuff that suffers impingement on
occasion and sciatica both from having fallen in the past. The most recent injury is a
concussion I incurred on the 16th of December when I lost my balance during a
bout of vertigo and inadvertently broke my fall with my head. It's been several
weeks and I'm still recovering. This presents still other challenges to our
self sufficiency. I will always need a medic around.
For More information please see
these links:
So why am I telling you all this?
What's my point? My point is that life is messy. When you have Meneiere's disease
you never know when you are going to be laid flat and as a result have your
entire life change. In 2007 I became fully disabled after several years of off
and on problems. Most people look at me and don't understand how or why I am
considered disabled. They see me doing "normal" everyday things. They
may think me simply lazy and uncaring because I sleep until noon or think me a
drunk when I walk with an unsteady and wobbly gait. They may assume I 'tune
out' or am indifferent during conversations because I don't hear properly. When
I fall people make all kinds of crazy judgements...if they see it...I must be
drunk...if they didn't see it then that injury couldn't have come from falling,
no one falls like that. They never associate it with a medical condition. Yes,
folks, I do have a medical condition and it’s an unstable unpredictable one at
that.
It's no picnic for my husband either. He has
to pick up the slack when I'm sick or recovering from an injury. He has ended
up leaving jobs to cover things here at home when I had to have surgery and
done lots of minion duty while putting up with people who pass judgement about
him not having a "regular" job. That includes potential employers who
view his being a stay at home dad and periods of unemployment due to family
issues as "voluntary" and negative. It's hard for him to be a stay at
home dad and caregiver when he thinks he should have a job and knows we need a
better income.
We've had to rebuild our lives
many times. Thank god we are experienced at it, I guess, because in spite of
all that in 2011 we were blessed with the ability to buy a house with a large
lot that is much cheaper than renting in our area. Yes, it’s a fixer and maybe
we didn't get as much done in 2012 as we would have liked but we had a lot of
family time at home and had our best gardening season ever! We are also making
some great friends here. Life has a way of rebounding and surprising you.
Do I still get sucked in by the
'this sucks' feelings? You bet I do. Lately it’s been heavily centered around
our financial/monetary worth by way of comparison. It's hard to feel valued
when you are sick on a regular but unpredictable basis and can't be what is
considered 'normal' with a "regular" job and decent income. It’s even
harder when you have to rely on others for even the basics sometimes. Very
often you can't see purpose in the pattern of your daily life because it's hard
to commit to things, big or small, when you don't know if you will be sick or
just fine on a particular day at a particular time. It becomes particularly
hard at times to know what your own value is in the world, the community, your
family and even in yourself. You have to learn who you are and what you are
capable of all over again to rebuild it. You also have to come to terms with
your limitations. I know I can't work at a traditional job anymore and I miss
that. Shopping, going to movies, and eating out are sometimes difficult; with
all the travel, people moving around and commotion sometimes it makes me sick.
Yes, I need extra help sometimes and yes it still kills me to ask for it. I'm
getting better at it but when self sufficiency is your goal it gets really
complicated. You do what you can when you can. Very few of my friends have
followed me on this journey but the few who did are totally worth all the ones
who didn't and I'm making new ones. Including all of you.
Without my disability a great
many good people and things would not be in my life. We would not have this
particular home. I would not have time to garden, help our minion as much as I
do or learn new things. The rare occasions when we go out are indeed a treat to
be enjoyed rather than something we take for granted; Even if I do get sick
while out. In each day there is always a small moment when I am grateful.
Grateful for my family, my beautiful children, our house, being able to still
hear my grandson laugh, the sun shining just a certain way, even the bills that
we pay for our house, food, warmth, lights, and to keep in touch with all of
you. Most of all I'm grateful for all
the opportunities that are still possible and open to us. There are just so
many.
I can still learn and do so much
and with that in mind I've decided that in 2013 instead of or perhaps as a part
of the monthly book review I'd like to cover one new thing I'm learning each
month. I do not plan out all my activities however since I got my first set of
knitting needles for Christmas that will be my January topic. As a crocheter it
should be interesting. I know that made a lot of guys groan but I promise to
have some 'manly' guy info with it. Okay maybe not so manly but definitely guy
centered information.
On a personal note I'd like to
thank my friends at the
Fighting
for Courtney Step by Step page on Facebook for reminding me of all this
when I had lost sight of it a bit more than usual and for all their
inspiration. Keep up the good fight Courtney!
Wifeofaprepper
As always you can join the
Facebook group, like
the
Facebook
community page, and visit the
website. All of these are
conveniently called “
Kaya Self
Sufficiency”. I hope you have enjoyed this post and I hope you are getting
better at providing as much as you can for yourself and for your family, group,
or community.
