May 30, 2022 • 29 mins
The host, Femi the Divine, shares 10 things she has learned as a "spoonie" or chronically ill person.
Topics Discussed - chronic illness, disability, invisible illness, fibromyalgia, health insurance, medical treatment, using your resources, trying new things, choosing yourself, self care, rest, doing what's best for you, physical therapy, spoonie life, coping with chronic illness and disability, etc.
Contact info - Femi the Divine
IG - @divinehealingpodcast or @femithedivine
Web - www.thedivinehealingpodcast.com
Email - femithedivine@gmail.com
Please follow, share, and leave us a rating if you enjoyed the show! Thanks for listening.
Contact info - Femi the Divine
IG @divinehealingpodcast
www.thedivinehealingpodcast.com
femithedivine@gmail.com
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome to the divine healingpodcast.
I'm your host family, thedivine, and thank you for tuning
into today's show.
We are on episode number 12.
Now, if this is your first timelistening.
Welcome if you're a returninglistener.
Welcome back.
And thank you for joining usagain.
So before I get into today'stopic, just a couple of updates.
Previously I was releasing on abi-weekly schedule.
(00:23):
We're going to be releasingepisodes every other Monday,
moving forward hopefully withthe intention to do weekly, but
for now just every other Monday.
So that'll give you guys an ideaof when to expect new episodes.
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(00:43):
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All of those things, help theshow to become more visible to
other folks who also may benefitfrom this information.
Thank you all for all of thepositive feedback that I've
received.
If you have any questions, anytopics you want to hear
discussed on the show, or justwant to say.
(01:03):
My contact information is in theshow notes, feel free to reach
out.
Today's topic is going to be I'mback with another top 10, 10
things that chronic illness hastaught me.
So if you haven't listened to, Ibelieve it's episode number
three, I talk about chronicillness and I talk about it a
bit, in the first episode aboutwhat brought me to this path.
(01:23):
And it was actually chronicunexplained illness, which led
to a diagnosis eventually.
I deal with a disorder calledfibromyalgia.
For those who are not familiarwith that disorder, it is a
disorder that impacts thecentral nervous system.
It often imitates lupus and anumber of other types of
disorders, but you don't have tohave fibromyalgia to relate to
(01:44):
this top 10.
I'm just speaking generallyabout chronic illness in
general.
These are not in any particularorder.
So I'm just going to go aheadand roll with the first one.
Rest is not a reward.
We get caught up in the hustleand bustle of life and it's oh,
(02:05):
I deserve to rest.
I deserve to take a day offwhile that's true.
Russia should not be a reward.
We all should be resting.
Resting should be a necessity.
One thing I've learned as far asrisk goes with chronic illness.
If you do not take the time outto take care of yourself and
rest your body, rest your mind,rest your spirit.
(02:25):
When you need to eventuallyyou're going to be forced to
cause you're going to crash.
I remember.
In the early stages before I gotmy diagnosis and even knew what
was happening, I would be hitwith debilitating fatigue, like
Betty to fall on my face flat.
Like I'm so tired.
I'm ready to pass out.
There were times where I felt.
(02:46):
I needed to pull over because Iwas driving and I was falling
asleep behind the wheel of thecar.
I remember day I was at a nailsalon and the lady was trying to
do my nails and I was fallingasleep in the chair and it was
like, I was sleeping eight,nine, sometimes 10 hours a
night.
And I would wake up.
I felt like I hadn't slept awink.
Rest is not a reward.
(03:07):
We all require rest.
It is a necessity.
Please don't run yourself intothe.
Because if you do eventually,your body's going to shut down
or you enforce you to rest.
Rest is a necessity, not areward.
The next thing money spent is aninvestment in your health and
wellbeing.
I know sometimes when.
(03:28):
Have experienced medical crisesor we're not feeling well, maybe
you don't want to take the timeoff to go to the doctor.
Maybe don't want to come outyour pocket with the copays.
Maybe you don't want to try anyadditional treatments.
Maybe your insurance doesn'tcover certain things and you
don't want to kick the money outof pocket.
I understand that any money thatis put towards your health,
(03:50):
whether it be beforehand I wouldthink something like eating
well, dieting, exercising,taking vitamins, supplements,
that type of thing that could bepreventative.
You would put money into thosethings as well.
But also for on the oppositeside, taking advantage of
treatments and other things, ifyou can afford to do.
Don't feel like that money iswasted.
(04:10):
You may have to try it, a fewdifferent things to get where it
is that you need to be.
I remember in the beginning ofmy journey, my doctor put me on
some different medications.
We tried a few different onesbefore we found one that worked
there was some trial and errorthere.
Some of those medications wereexpensive.
Some of them not so much, someof them vary by insurance, but
that was something that I had totry because I wanted to feel
(04:33):
better.
Some other things that I tried,I did aquatic therapy which is
basically physical therapy in apool.
Because I was having some issueswith my hip joint.
It's actually easier to treatmore than one body part and the
water as opposed to on land.
So that was something that wasavailable to me through my
insurance, that I hate payingthose$60 copays twice a week.
(04:56):
Yes.
But that was really one of the.
Things that helped me out as faras my mobility went.
So that brings me to the nextone.
Don't be afraid to try newthings.
Peer recently I've been tryinginfusion treatments.
Do you remember rheumatologistsoffice?
The one that I get is called theMyers cocktail.
(05:17):
It's something that is notcovered by insurance and it's
not cheap, but it was somethingI was willing to try to see if
it would help with my energylevel and my fatigue.
And it has worked out reallywonderfully so far.
The next thing don't be afraidto ask for help.
I know I've spoken about this inpast episodes, but sometimes.
Especially when you're notfeeling well, you feel like
(05:38):
maybe you don't want to bothersomeone else.
Maybe you don't want to burden,quote, unquote, someone else.
Sometimes you really need help.
And other people are justwaiting for you to ask them to
step in.
So don't be afraid to ask forhelp, instead of struggling
through something that wassomething that I had to put my
pride aside on, strugglingthrough something that I
(06:00):
couldn't get done because Iwasn't feeling well, or I didn't
have the energy or capacity todo, asking for someone to help,
could help me get it done prettyquickly and, without stressing
myself out.
Don't be afraid to ask for helpall those people in your life
that say, let me know if youneed anything.
Reach out to them and see ifthey really met what they said.
(06:20):
The next thing advocate foryourself and do your research.
A lot of times we go to doctorsand maybe they aren't very
helpful.
Maybe you haven't found theright doctor.
It may take you doing someresearch to find a doctor that's
good in that particular field ofstudy, take recommendations from
other people.
If you know them go online andread reviews, ask for referrals.
(06:45):
If you've been given aparticular diagnosis and you're
not sure about that, seek asecond and third opinion, read
up on the disorder online, readup on different remedies,
different treatments.
If you don't want to takemedications, we'll get holistic
treatments, but speak up foryourself and advocate for
yourself.
I know for me, it took megetting with a really good
doctor and me speaking up formyself so that she could run the
(07:09):
additional tests and give me thereferrals and things that I
needed because for a long time,I felt like I was spinning my
wheels and not getting answers,which is very common with
fibromyalgia.
Many people report that it takesyears just to get to the point
of diagnosis.
There's a lot of, symptoms thatyou may be feeling, but there's
not tests for them.
(07:29):
They're not showing up.
And it's basically a diagnosisof exclusion.
So they test you for all ofthese other things.
Everything comes back negative.
So it must be fibromyalgia.
But definitely advocate foryourself and speak up.
If you don't agree withsomething, you don't want to do
something, you want to trysomething new, do the research
and come to your doctor'sappointments, prepared, have
(07:52):
questions, have suggestions sothat you can work with your
doctor or doctors.
If you have a team of doctors.
I remember at one point in time,I think I saw 10 before.
There's for a bunch of differentthings.
And now I've really just see therheumatologist and my primary
care doctor.
Definitely advocate foryourself.
The next thing, use yourresources here.
(08:13):
Resources again, can beresearch.
It can be other people maybe whohave the same disorder that you
have.
I have made plenty of fibrofriends on this journey who have
been a big help to me.
I have been a fibro friend toother people, maybe it's reading
books about the disorder a majorresource that I made sure I took
(08:33):
advantage of.
If you have a flexible spendingaccount or a health savings
account through your job, I knowmagic.
The FSA and they have a debitcard.
So when I need to go to thedoctor and I have to pay those
copays, that money is deductedfrom my paycheck, every pay.
And then it's loaded on thedebit card and the debit card is
(08:53):
loaded first of the year.
When I have to go to the doctorand try these different
treatments and pay for mymedications and all these kinds
of things, that money is on thatdebit card.
And so I don't have to worryabout disrupting my budget or
taking money from somewhere.
Or not being able to get thecare that I need because I don't
have the financial resourcesbecause that money is already
(09:14):
front loaded on that card thathas been a big blessing to me
over the past few years,especially during a period of
time where I wasn't working whenI was ill and I was out on
disability because that moneywas loaded on that card for me
to be able to use.
The next thing don't be afraidto outsource or delegate that
(09:35):
may be delegating to someoneelse in your life.
Maybe in your household, maybeit's your spouse or significant
other.
Maybe your children are helpingyou with things.
Maybe a friend or a familymember is helping you with
things, but also think biggerthan that, if you can afford to
do are there services that youcan pay for that will help you,
take things off of your plateand make things easier for you?
(09:58):
PEI, to have someone come andclean the house for me before I
pay to have my hair doneregularly, I maintain my own
natural hair for years, but itgot to a point where I had too
much hair and not enoughstrength in my hands.
Thanks to fibro.
They deal with it anymore.
So I added that back into mybudget to be able to get my hair
done regularly so that I don'thave to try to struggle through
(10:20):
and end up in a flood.
From washing and detangling andblow drying and styling.
And, it could take me a day, twodays, three days to try to get
through that when I can go tothe salon and the young lady can
wash me, blow dry me, break medown in two hours for a
reasonable price.
Maybe you are outsourcing.
Meal prep, foods, delivery.
We talked about cleaning.
(10:40):
People have laundry services,grocery shopping, maybe you're
ordering your groceries throughInstacart or some sort of
service like that.
I know at the beginning of myjourney, it was very hard for
me.
There was something weird.
Grocery shopping.
There was something weird aboutthe pushing of the cart in the
store.
I swear it would wipe me out andI will have to come home and
(11:01):
take a nap after I did mygrocery shopping, or I remember
there being a plenty of daywhere I got there and, maybe
after work and I was so drainedand so tired and I sat there in
the parking lot and I couldn'teven get myself together to go
in the store and walk with thiscar and get the things that I
needed.
So I just turned around thereare a lot of delivery services.
Now you can get yourprescriptions delivered can get
(11:23):
food delivered.
I think COVID has really helpedus.
Implement a lot of otherservices and people didn't don't
think about that.
We think about delivery being aconvenient thing, but what about
folks who are elderly or who areill or who have mobility issues
or who are disabled, we rely onthose services too.
Taking advantage of otherservices and outsourcing tasks
(11:44):
to make your life easier so thatthere's not as much.
And strain on you, especiallywhen you may already not be
feeling all that.
Great.
The next thing remember, you aredoing the very best that you can
and that's all you can do.
(12:05):
Some days you may not haveenough energy to take care of
the things you need to take careof.
Some days you may not have thetime to take care of the things
you need to take care of, butdon't feel bad.
Don't feel guilty.
Because you don't want to pushyourself past the limit and
overdo it.
(12:25):
Something I've had to learnthrough this journey is how to
pace myself.
I know that if I overdo thingsit's going to cause me to have
what I refer to as a fibroflare, a flare is basically an
uptick in whatever your symptomsare.
It can be brought on by a numberof different factors.
(12:45):
Maybe that stress.
Maybe you got a cold orsomething like that, and that
caused your symptoms to flare.
I know a big one for me is theweather.
When the weather shifts thebarometric pressure shifts, it's
raining.
Ironically, it's pouring downright now as I'm recording this.
So I apologize if you hear thatin the background, rain is a big
(13:06):
trigger for me.
Cold weather.
Like that cold blue, whether wesometimes get here on the east
coast in January and February.
So doesn't seem to bother me asmuch, but definitely storms,
Chile rains.
Sometimes even it being too hotoutside.
(13:26):
Can wipe me out and make meexhausted.
And sometimes I just have tosay, you know what I'm done for
the day I am out of spoons.
If you all are familiar withthis spoony theory from, but you
don't look sick.com and I justhave to go to bed.
I'm done with that.
Sometimes it's like that, but Ican't push myself too hard.
(13:50):
I can't push myself too farbecause eventually it's going to
cause me to crash.
So learning how to pace yourselfand figure out how many tasks
you can do in a day or in a weekor in a month.
Or, if I know I have to do this,then maybe I have to take a step
back in other areas of my lifeso that you can do that.
(14:13):
That you can with planning andpreparation.
Sometimes that goes out thewindow.
You get a random thunderstormand all your plans for the day
are gone, but don't feel guilty.
You can only do what you can doeach day is a new day in which
you don't get done today.
You may just have to put offuntil tomorrow and that's okay.
(14:34):
The next one.
Everybody won't understand whatit is that you're going through,
nor will they care.
I think the biggest challengeare faced with chronic illness
is the fact that my disorder isinvisible.
If you know me personallyoffline in real life, if you've
(14:59):
ever seen a picture of me, Orbumped into me on the street.
I look perfectly fine andnormal.
I am disabled, but I don't havereally any physical signs of
disability unless you catch meon a bad day and maybe I'm
limping a little bit or I'mmoving a little slow, but in all
(15:21):
honesty, most of the time, ifI'm having some sort of flare,
I'm just going to stay home andrest if I can.
So some people may never get tosee that.
But I think the hard part ispeople, even when they do know
that I have an invisibledisability, that they forget all
about it because they see you orthey're like, wow, you look
great.
And I see you online and you'redoing all of the things and you
(15:45):
work and you have a busy lifeand you travel and you do all of
these things and people don'tunderstand how much planning and
preparation.
Goes into all of those things.
They don't understand that Ihave to pace myself sometimes so
that I can do the things that Iwant to do as well as the things
(16:05):
that I have to do understandthat everything in my life
there's forethought that goesinto it every single day.
I make choices based on how Ifeel when I wake up that
morning, as well as how I feelbefore I go to bed the night
before.
It can be very challenging tobalance all of my competing
(16:28):
priorities when I don't know howI'm going to feel.
Everybody's not going to getthat.
Sometimes you have to cancel.
Sometimes you can't make it tothings.
Some days you disappear off thegrid because you're sleep all
day because you're not feelingwell.
Some activities you may have toopt out or make modifications
(16:49):
because.
You don't know how your body isgoing to respond to that?
I know one thing for me, when Itravel, I used the disability
service at the airport.
People probably see me beingwheeled around in a wheelchair
and they're like, oh, what'swrong.
There's nothing wrong with her.
Looking at her taking advantageof the wheelchair.
(17:09):
No.
You all know, walking throughthe airport and going from gate
to gate, maybe you haveconnecting flights and can be
very exhausting for a regularperson who is not disabled.
So for me, taking advantage ofthat service.
Helps me to take the stress andstrain off of my body.
(17:30):
So I'm not as exhausted when Iget where I'm going.
I don't tire myself out inadvance.
So it's more of a preventativething.
It also could be that maybe Ijust wasn't feeling well that
morning when I got up theairports called, the early in
the morning.
But I always take advantage ofthat service because it helps me
to get to my destination.
(17:50):
It makes things easier.
For me, it's just hard walking,all those long hallways and
trying to drag a suitcase andall of that kind of stuff.
That's the service that I takeadvantage of.
That's what it's there for.
I don't have to prove toanybody.
You know that I'm disabled.
I know that I'm disabled and I'musing the resources that are
available to me.
I don't care what they thinkthey don't have to live in this
(18:12):
body.
I feel like at this point in mylife, I don't have to explain to
other people, if they havequestions, I'm happy to answer
them.
I may offer a little bit ofinformation at the beginning,
just, so people know what toexpect, but I don't go into
great detail about it.
Something that I grappled withwas the D word, the disabled
(18:33):
word, if I was to even claimthat word, it is what it is.
It doesn't have to be a deathsentence.
As it relates to my particulardisorder, it doesn't have to be
a bad thing.
It's what it is.
Everybody won't understand.
I'm not going to keep repeatingmyself about it and everybody
won't care.
(18:54):
It just is what it is.
People can be self-absorbed andonly care about themselves.
I just have to make sure I'mtaking care of the things that I
need to take care of and takingthe necessary steps to take the
very best care of myself.
And that brings me to.
The last thing on the list.
(19:17):
And I guess you could say thisis number one at the end of the
day, do what's best for you?
People will try to give youadvice.
Oh, you have this disorder.
My friend has that and they dothis and this.
(19:37):
One of the big things peoplealways tell you, oh, just do
yoga and stretch and eathealthy.
And that'll cure that right upfor you don't even know what
they're talking about.
Can you.
And stretching be helpful.
Of course, can eating a healthydiet and getting breasts, eight
hours of sleep at night.
Be helpful, of course, butthat's not the be all.
(19:59):
And the end, all of those thingswould benefit anybody.
But that doesn't mean that.
They're going to benefit my painlevel or my symptoms for today.
One thing about fibromyalgia,fibromyalgia has over 200
symptoms.
Everybody doesn't get all 200 ofthem and every single day,
(20:22):
whatever symptom decides to popup will pop up.
It may not be all of the onesyou normally have.
And sometimes you get some brandnew ones and they pop up out of
nowhere.
I understand that you have to dowhat's best for you and also in
conjunction with your doctors orwhomever else is on your team
(20:43):
think is best for you becausethey know your specific
situation.
That's also why you have to gointo your appointments, prepared
and advocate for yourselfbecause you need to talk to them
and let them know what yoursymptoms are.
If you're experiencing.
Symptoms.
If something has changed thatway, that they can address it
and maybe get you someadditional things that you may
(21:03):
need.
Maybe you need a differentmedication.
Maybe you need to come off ofmedication.
Maybe they need to refer you tosome type of therapy or other
treatment to help you.
Maybe you need some additionaltests to be run.
Maybe you need blood work.
That's why you should come toyour appointment prepared so
that you can work in conjunctionwith your medical provider, or
(21:26):
if you have a holisticpractitioner, whomever, it is
that is on your team that isworking with you to get you to
optimal health so that you cando what's best for you.
Again, like I said, everybody'snot going to understand your
situation and everybody's notgoing to care, but they don't
(21:47):
have to limit your.
And they will never experiencewhat it is that you experienced,
even if somebody has the samedisorder you do that doesn't
mean that they're going toexperience the same things that
you experienced.
It may present differently forthem.
Also, other factors may play apart how old you are, what type
of shape you're in, what yourdiets like I know for
(22:11):
fibromyalgia, what climate youlive in is a big one.
I understand that you have to doas best for you individually.
Sometimes that may mean choosingto opt out of things.
For me, I made a big careerchange about four or five years
ago.
That was something that I had todo.
And it's always something that'sin the back of my mind because I
(22:32):
have to be mindful of what I amdoing.
The type of work I'm doing.
I can't have a job that'sparticularly stressful.
I have felt some type of wayabout that, because I feel like
in some ways, or actually Idon't feel like that anymore.
(22:52):
I felt in the past, in some waysthat, being disabled was going
to limit my career.
'cause I could not, maybe moveup the ladder and the management
or some other things, I guess itwould depend on the field and
the job, but that was a decisionthat I had to make me decide
that's not something that I wantfor my career.
I don't want the headache ofbeing in management.
(23:14):
I'd rather just stay in the rolethat I'm in as an individual
contributor.
There was a job offer thatpresented itself to me here
recently.
It was a great opportunity.
One of the things that was adeal breaker for me was they
want you in the office five daysa week, it was a longer commute
from where my current job is.
And I don't have to go therefive days a week.
(23:35):
The hours would be somewhatflexible, but not quite as
flexible as the hours I havenow.
Thinking about maybe if you'regoing to switch careers,
thinking about what does thehealth insurance and stuff like
that looks like if you'rechronically ill, you probably
have more doctors appointed.
Do they have FSA HSA, to makethose payments.
What is the prescription planlook like?
(23:57):
What does the insurance cover?
Will it cover those additionaltreatments that you need to take
or experience or.
One thing that was a big dealfor me was I don't like
insurance that needs referrals.
I like open access.
I'm not going to do an HMObecause I want to be able to see
the doctors that I want to see.
So with all of those unansweredquestions, I had to take a step
back and assess the opportunityoffered to me and I ultimately
(24:20):
chose to decline it.
It just didn't seem like a goodidea for me to turn my whole
life upside down for thepotential.
Of a new position that may ormay not further me along in my
career.
Does that mean that it may takeme a little bit longer to get
(24:41):
where I need to go or maybe makethe salary that I would like to
make?
Maybe I don't know, but thatwasn't a chance that I was
willing to take because it wastoo risky.
All those changes at the sametime could have put me in a
flare, could have caused me tohave setbacks with my health.
And at the end of the day, myhealth is more important than
(25:02):
anything else in this world,because it's all that I have.
So is that all of that to say.
You will have to make certaindecisions in your life as a
chronically ill person, thateverybody else may not be happy
about.
It may impact other people, butat the end of the day, do what's
best for you and your conditionand your body never have I been
(25:26):
in this situation where choosingmyself was the wrong decision.
We all want to live long,healthy, prosperous lives.
So that means that we have tomake the choices right.
Remember to do who is the bestfor you?
I'd have to say overall.
(25:46):
This journey has been aninteresting one.
I am at a point where I havegotten my condition to a point
where it is manageable.
I only see my doctor once a yearfor my physical.
I see the rheumatologistsprobably a little bit more often
than that, but on a as neededbasis.
And that was really throughtrial and error, trying a bunch
(26:09):
of different things, seeing whatworked, what didn't work.
And then adjusting as needed.
I weaned myself off ofmedication.
I want to say the end of thefirst year, I don't take
medication regularly anymore.
That was a choice that I made.
And my doctor, when I, broughtit up to her, she said you did a
great job of doing it on yourown.
(26:29):
The intention was never for youto stay on those meds forever.
That's another thing.
A lot of times we get caught upin, I don't want to take,
certain medication, sometimesyou're in a situation where you
may need it.
The point is to feel better notto not take medicine.
If you have concerns about themedication against you, your
research, look at the sideeffects.
(26:51):
See if the benefits of seeingtheir medicine outweigh the
cons.
See, if it works for yourparticular situation, some folks
just don't believe in takingmedicine or they feel they do
better without maybe they dobetter with holistic methods and
remedies.
But even with that, there'sgoing to be trial and error
(27:12):
until you find what works foryou.
Be open-minded be willing to trynew things, use the resources
available to you.
Don't be afraid to ask for help.
Outsource and delegate where youcan remember money spent is an
investment in your health andwellbeing.
(27:33):
And don't forget you're doingthe best you can.
Everybody's not going tounderstand or care.
And at the end of the day, dowhat's best for you.
If you are a spoonie, like I am,nobody else can understand what
it's like to live in your body.
If you feel like you want toshare.
You want to advocate, especiallysince may is fibromyalgia
(27:57):
awareness month.
The actual day was on may the12th.
Today is the 27th, which iscloser to the end of the month.
As I'm recording this, do what'sbest for you so that you can
feel better and live as close aspossible to a normal life as you
(28:17):
can.
So I know that was a mouthful.
I hope you all found this top10, helpful for whatever your
disorder may be.
Chronic illness can be a widevariety of things.
Doesn't just have to befibromyalgia or lupus or
multiple sclerosis or whateverother disorders are out there.
(28:39):
Depression and anxiety orchronic illnesses, diabetes,
high blood pressure, all ofthose things can be chronic
illnesses and they impact yourlife on a day-to-day basis.
But I hope you found this top 10list of things.
Helpful.
Thank you for listening.
If you made it this far to theend and before I go, I'm going
(29:01):
to leave you with an affirmationas always.
I affirm I will do what's bestfor me.
Thanks for listening.
Bye-bye.
Welcome to the divine healingpodcast.
I'm your host family, thedivine, and thank you for tuning
into today's show.
We are on episode number 12.
Now, if this is your first timelistening.
Welcome if you're a returninglistener.
Welcome back.
And thank you for joining usagain.
So before I get into today'stopic, just a couple of updates.
Previously I was releasing on abi-weekly schedule.
(00:23):
We're going to be releasingepisodes every other Monday,
moving forward hopefully withthe intention to do weekly, but
for now just every other Monday.
So that'll give you guys an ideaof when to expect new episodes.
And again, if you have notalready done, so please follow,
please share.
Please give us a rating oniTunes, Spotify, wherever you
(00:43):
get your podcasts, ratingsharing, subscribing files.
All of those things, help theshow to become more visible to
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Thank you all for all of thepositive feedback that I've
received.
If you have any questions, anytopics you want to hear
discussed on the show, or justwant to say.
(01:03):
My contact information is in theshow notes, feel free to reach
out.
Today's topic is going to be I'mback with another top 10, 10
things that chronic illness hastaught me.
So if you haven't listened to, Ibelieve it's episode number
three, I talk about chronicillness and I talk about it a
bit, in the first episode aboutwhat brought me to this path.
(01:23):
And it was actually chronicunexplained illness, which led
to a diagnosis eventually.
I deal with a disorder calledfibromyalgia.
For those who are not familiarwith that disorder, it is a
disorder that impacts thecentral nervous system.
It often imitates lupus and anumber of other types of
disorders, but you don't have tohave fibromyalgia to relate to
(01:44):
this top 10.
I'm just speaking generallyabout chronic illness in
general.
These are not in any particularorder.
So I'm just going to go aheadand roll with the first one.
Rest is not a reward.
We get caught up in the hustleand bustle of life and it's oh,
(02:05):
I deserve to rest.
I deserve to take a day offwhile that's true.
Russia should not be a reward.
We all should be resting.
Resting should be a necessity.
One thing I've learned as far asrisk goes with chronic illness.
If you do not take the time outto take care of yourself and
rest your body, rest your mind,rest your spirit.
(02:25):
When you need to eventuallyyou're going to be forced to
cause you're going to crash.
I remember.
In the early stages before I gotmy diagnosis and even knew what
was happening, I would be hitwith debilitating fatigue, like
Betty to fall on my face flat.
Like I'm so tired.
I'm ready to pass out.
There were times where I felt.
(02:46):
I needed to pull over because Iwas driving and I was falling
asleep behind the wheel of thecar.
I remember day I was at a nailsalon and the lady was trying to
do my nails and I was fallingasleep in the chair and it was
like, I was sleeping eight,nine, sometimes 10 hours a
night.
And I would wake up.
I felt like I hadn't slept awink.
Rest is not a reward.
(03:07):
We all require rest.
It is a necessity.
Please don't run yourself intothe.
Because if you do eventually,your body's going to shut down
or you enforce you to rest.
Rest is a necessity, not areward.
The next thing money spent is aninvestment in your health and
wellbeing.
I know sometimes when.
(03:28):
Have experienced medical crisesor we're not feeling well, maybe
you don't want to take the timeoff to go to the doctor.
Maybe don't want to come outyour pocket with the copays.
Maybe you don't want to try anyadditional treatments.
Maybe your insurance doesn'tcover certain things and you
don't want to kick the money outof pocket.
I understand that any money thatis put towards your health,
(03:50):
whether it be beforehand I wouldthink something like eating
well, dieting, exercising,taking vitamins, supplements,
that type of thing that could bepreventative.
You would put money into thosethings as well.
But also for on the oppositeside, taking advantage of
treatments and other things, ifyou can afford to do.
Don't feel like that money iswasted.
(04:10):
You may have to try it, a fewdifferent things to get where it
is that you need to be.
I remember in the beginning ofmy journey, my doctor put me on
some different medications.
We tried a few different onesbefore we found one that worked
there was some trial and errorthere.
Some of those medications wereexpensive.
Some of them not so much, someof them vary by insurance, but
that was something that I had totry because I wanted to feel
(04:33):
better.
Some other things that I tried,I did aquatic therapy which is
basically physical therapy in apool.
Because I was having some issueswith my hip joint.
It's actually easier to treatmore than one body part and the
water as opposed to on land.
So that was something that wasavailable to me through my
insurance, that I hate payingthose$60 copays twice a week.
(04:56):
Yes.
But that was really one of the.
Things that helped me out as faras my mobility went.
So that brings me to the nextone.
Don't be afraid to try newthings.
Peer recently I've been tryinginfusion treatments.
Do you remember rheumatologistsoffice?
The one that I get is called theMyers cocktail.
(05:17):
It's something that is notcovered by insurance and it's
not cheap, but it was somethingI was willing to try to see if
it would help with my energylevel and my fatigue.
And it has worked out reallywonderfully so far.
The next thing don't be afraidto ask for help.
I know I've spoken about this inpast episodes, but sometimes.
Especially when you're notfeeling well, you feel like
(05:38):
maybe you don't want to bothersomeone else.
Maybe you don't want to burden,quote, unquote, someone else.
Sometimes you really need help.
And other people are justwaiting for you to ask them to
step in.
So don't be afraid to ask forhelp, instead of struggling
through something that wassomething that I had to put my
pride aside on, strugglingthrough something that I
(06:00):
couldn't get done because Iwasn't feeling well, or I didn't
have the energy or capacity todo, asking for someone to help,
could help me get it done prettyquickly and, without stressing
myself out.
Don't be afraid to ask for helpall those people in your life
that say, let me know if youneed anything.
Reach out to them and see ifthey really met what they said.
(06:20):
The next thing advocate foryourself and do your research.
A lot of times we go to doctorsand maybe they aren't very
helpful.
Maybe you haven't found theright doctor.
It may take you doing someresearch to find a doctor that's
good in that particular field ofstudy, take recommendations from
other people.
If you know them go online andread reviews, ask for referrals.
(06:45):
If you've been given aparticular diagnosis and you're
not sure about that, seek asecond and third opinion, read
up on the disorder online, readup on different remedies,
different treatments.
If you don't want to takemedications, we'll get holistic
treatments, but speak up foryourself and advocate for
yourself.
I know for me, it took megetting with a really good
doctor and me speaking up formyself so that she could run the
(07:09):
additional tests and give me thereferrals and things that I
needed because for a long time,I felt like I was spinning my
wheels and not getting answers,which is very common with
fibromyalgia.
Many people report that it takesyears just to get to the point
of diagnosis.
There's a lot of, symptoms thatyou may be feeling, but there's
not tests for them.
(07:29):
They're not showing up.
And it's basically a diagnosisof exclusion.
So they test you for all ofthese other things.
Everything comes back negative.
So it must be fibromyalgia.
But definitely advocate foryourself and speak up.
If you don't agree withsomething, you don't want to do
something, you want to trysomething new, do the research
and come to your doctor'sappointments, prepared, have
(07:52):
questions, have suggestions sothat you can work with your
doctor or doctors.
If you have a team of doctors.
I remember at one point in time,I think I saw 10 before.
There's for a bunch of differentthings.
And now I've really just see therheumatologist and my primary
care doctor.
Definitely advocate foryourself.
The next thing, use yourresources here.
(08:13):
Resources again, can beresearch.
It can be other people maybe whohave the same disorder that you
have.
I have made plenty of fibrofriends on this journey who have
been a big help to me.
I have been a fibro friend toother people, maybe it's reading
books about the disorder a majorresource that I made sure I took
(08:33):
advantage of.
If you have a flexible spendingaccount or a health savings
account through your job, I knowmagic.
The FSA and they have a debitcard.
So when I need to go to thedoctor and I have to pay those
copays, that money is deductedfrom my paycheck, every pay.
And then it's loaded on thedebit card and the debit card is
(08:53):
loaded first of the year.
When I have to go to the doctorand try these different
treatments and pay for mymedications and all these kinds
of things, that money is on thatdebit card.
And so I don't have to worryabout disrupting my budget or
taking money from somewhere.
Or not being able to get thecare that I need because I don't
have the financial resourcesbecause that money is already
(09:14):
front loaded on that card thathas been a big blessing to me
over the past few years,especially during a period of
time where I wasn't working whenI was ill and I was out on
disability because that moneywas loaded on that card for me
to be able to use.
The next thing don't be afraidto outsource or delegate that
(09:35):
may be delegating to someoneelse in your life.
Maybe in your household, maybeit's your spouse or significant
other.
Maybe your children are helpingyou with things.
Maybe a friend or a familymember is helping you with
things, but also think biggerthan that, if you can afford to
do are there services that youcan pay for that will help you,
take things off of your plateand make things easier for you?
(09:58):
PEI, to have someone come andclean the house for me before I
pay to have my hair doneregularly, I maintain my own
natural hair for years, but itgot to a point where I had too
much hair and not enoughstrength in my hands.
Thanks to fibro.
They deal with it anymore.
So I added that back into mybudget to be able to get my hair
done regularly so that I don'thave to try to struggle through
(10:20):
and end up in a flood.
From washing and detangling andblow drying and styling.
And, it could take me a day, twodays, three days to try to get
through that when I can go tothe salon and the young lady can
wash me, blow dry me, break medown in two hours for a
reasonable price.
Maybe you are outsourcing.
Meal prep, foods, delivery.
We talked about cleaning.
(10:40):
People have laundry services,grocery shopping, maybe you're
ordering your groceries throughInstacart or some sort of
service like that.
I know at the beginning of myjourney, it was very hard for
me.
There was something weird.
Grocery shopping.
There was something weird aboutthe pushing of the cart in the
store.
I swear it would wipe me out andI will have to come home and
(11:01):
take a nap after I did mygrocery shopping, or I remember
there being a plenty of daywhere I got there and, maybe
after work and I was so drainedand so tired and I sat there in
the parking lot and I couldn'teven get myself together to go
in the store and walk with thiscar and get the things that I
needed.
So I just turned around thereare a lot of delivery services.
Now you can get yourprescriptions delivered can get
(11:23):
food delivered.
I think COVID has really helpedus.
Implement a lot of otherservices and people didn't don't
think about that.
We think about delivery being aconvenient thing, but what about
folks who are elderly or who areill or who have mobility issues
or who are disabled, we rely onthose services too.
Taking advantage of otherservices and outsourcing tasks
(11:44):
to make your life easier so thatthere's not as much.
And strain on you, especiallywhen you may already not be
feeling all that.
Great.
The next thing remember, you aredoing the very best that you can
and that's all you can do.
(12:05):
Some days you may not haveenough energy to take care of
the things you need to take careof.
Some days you may not have thetime to take care of the things
you need to take care of, butdon't feel bad.
Don't feel guilty.
Because you don't want to pushyourself past the limit and
overdo it.
(12:25):
Something I've had to learnthrough this journey is how to
pace myself.
I know that if I overdo thingsit's going to cause me to have
what I refer to as a fibroflare, a flare is basically an
uptick in whatever your symptomsare.
It can be brought on by a numberof different factors.
(12:45):
Maybe that stress.
Maybe you got a cold orsomething like that, and that
caused your symptoms to flare.
I know a big one for me is theweather.
When the weather shifts thebarometric pressure shifts, it's
raining.
Ironically, it's pouring downright now as I'm recording this.
So I apologize if you hear thatin the background, rain is a big
(13:06):
trigger for me.
Cold weather.
Like that cold blue, whether wesometimes get here on the east
coast in January and February.
So doesn't seem to bother me asmuch, but definitely storms,
Chile rains.
Sometimes even it being too hotoutside.
(13:26):
Can wipe me out and make meexhausted.
And sometimes I just have tosay, you know what I'm done for
the day I am out of spoons.
If you all are familiar withthis spoony theory from, but you
don't look sick.com and I justhave to go to bed.
I'm done with that.
Sometimes it's like that, but Ican't push myself too hard.
(13:50):
I can't push myself too farbecause eventually it's going to
cause me to crash.
So learning how to pace yourselfand figure out how many tasks
you can do in a day or in a weekor in a month.
Or, if I know I have to do this,then maybe I have to take a step
back in other areas of my lifeso that you can do that.
(14:13):
That you can with planning andpreparation.
Sometimes that goes out thewindow.
You get a random thunderstormand all your plans for the day
are gone, but don't feel guilty.
You can only do what you can doeach day is a new day in which
you don't get done today.
You may just have to put offuntil tomorrow and that's okay.
(14:34):
The next one.
Everybody won't understand whatit is that you're going through,
nor will they care.
I think the biggest challengeare faced with chronic illness
is the fact that my disorder isinvisible.
If you know me personallyoffline in real life, if you've
(14:59):
ever seen a picture of me, Orbumped into me on the street.
I look perfectly fine andnormal.
I am disabled, but I don't havereally any physical signs of
disability unless you catch meon a bad day and maybe I'm
limping a little bit or I'mmoving a little slow, but in all
(15:21):
honesty, most of the time, ifI'm having some sort of flare,
I'm just going to stay home andrest if I can.
So some people may never get tosee that.
But I think the hard part ispeople, even when they do know
that I have an invisibledisability, that they forget all
about it because they see you orthey're like, wow, you look
great.
And I see you online and you'redoing all of the things and you
(15:45):
work and you have a busy lifeand you travel and you do all of
these things and people don'tunderstand how much planning and
preparation.
Goes into all of those things.
They don't understand that Ihave to pace myself sometimes so
that I can do the things that Iwant to do as well as the things
(16:05):
that I have to do understandthat everything in my life
there's forethought that goesinto it every single day.
I make choices based on how Ifeel when I wake up that
morning, as well as how I feelbefore I go to bed the night
before.
It can be very challenging tobalance all of my competing
(16:28):
priorities when I don't know howI'm going to feel.
Everybody's not going to getthat.
Sometimes you have to cancel.
Sometimes you can't make it tothings.
Some days you disappear off thegrid because you're sleep all
day because you're not feelingwell.
Some activities you may have toopt out or make modifications
(16:49):
because.
You don't know how your body isgoing to respond to that?
I know one thing for me, when Itravel, I used the disability
service at the airport.
People probably see me beingwheeled around in a wheelchair
and they're like, oh, what'swrong.
There's nothing wrong with her.
Looking at her taking advantageof the wheelchair.
(17:09):
No.
You all know, walking throughthe airport and going from gate
to gate, maybe you haveconnecting flights and can be
very exhausting for a regularperson who is not disabled.
So for me, taking advantage ofthat service.
Helps me to take the stress andstrain off of my body.
(17:30):
So I'm not as exhausted when Iget where I'm going.
I don't tire myself out inadvance.
So it's more of a preventativething.
It also could be that maybe Ijust wasn't feeling well that
morning when I got up theairports called, the early in
the morning.
But I always take advantage ofthat service because it helps me
to get to my destination.
(17:50):
It makes things easier.
For me, it's just hard walking,all those long hallways and
trying to drag a suitcase andall of that kind of stuff.
That's the service that I takeadvantage of.
That's what it's there for.
I don't have to prove toanybody.
You know that I'm disabled.
I know that I'm disabled and I'musing the resources that are
available to me.
I don't care what they thinkthey don't have to live in this
(18:12):
body.
I feel like at this point in mylife, I don't have to explain to
other people, if they havequestions, I'm happy to answer
them.
I may offer a little bit ofinformation at the beginning,
just, so people know what toexpect, but I don't go into
great detail about it.
Something that I grappled withwas the D word, the disabled
(18:33):
word, if I was to even claimthat word, it is what it is.
It doesn't have to be a deathsentence.
As it relates to my particulardisorder, it doesn't have to be
a bad thing.
It's what it is.
Everybody won't understand.
I'm not going to keep repeatingmyself about it and everybody
won't care.
(18:54):
It just is what it is.
People can be self-absorbed andonly care about themselves.
I just have to make sure I'mtaking care of the things that I
need to take care of and takingthe necessary steps to take the
very best care of myself.
And that brings me to.
The last thing on the list.
(19:17):
And I guess you could say thisis number one at the end of the
day, do what's best for you?
People will try to give youadvice.
Oh, you have this disorder.
My friend has that and they dothis and this.
(19:37):
One of the big things peoplealways tell you, oh, just do
yoga and stretch and eathealthy.
And that'll cure that right upfor you don't even know what
they're talking about.
Can you.
And stretching be helpful.
Of course, can eating a healthydiet and getting breasts, eight
hours of sleep at night.
Be helpful, of course, butthat's not the be all.
(19:59):
And the end, all of those thingswould benefit anybody.
But that doesn't mean that.
They're going to benefit my painlevel or my symptoms for today.
One thing about fibromyalgia,fibromyalgia has over 200
symptoms.
Everybody doesn't get all 200 ofthem and every single day,
(20:22):
whatever symptom decides to popup will pop up.
It may not be all of the onesyou normally have.
And sometimes you get some brandnew ones and they pop up out of
nowhere.
I understand that you have to dowhat's best for you and also in
conjunction with your doctors orwhomever else is on your team
(20:43):
think is best for you becausethey know your specific
situation.
That's also why you have to gointo your appointments, prepared
and advocate for yourselfbecause you need to talk to them
and let them know what yoursymptoms are.
If you're experiencing.
Symptoms.
If something has changed thatway, that they can address it
and maybe get you someadditional things that you may
(21:03):
need.
Maybe you need a differentmedication.
Maybe you need to come off ofmedication.
Maybe they need to refer you tosome type of therapy or other
treatment to help you.
Maybe you need some additionaltests to be run.
Maybe you need blood work.
That's why you should come toyour appointment prepared so
that you can work in conjunctionwith your medical provider, or
(21:26):
if you have a holisticpractitioner, whomever, it is
that is on your team that isworking with you to get you to
optimal health so that you cando what's best for you.
Again, like I said, everybody'snot going to understand your
situation and everybody's notgoing to care, but they don't
(21:47):
have to limit your.
And they will never experiencewhat it is that you experienced,
even if somebody has the samedisorder you do that doesn't
mean that they're going toexperience the same things that
you experienced.
It may present differently forthem.
Also, other factors may play apart how old you are, what type
of shape you're in, what yourdiets like I know for
(22:11):
fibromyalgia, what climate youlive in is a big one.
I understand that you have to doas best for you individually.
Sometimes that may mean choosingto opt out of things.
For me, I made a big careerchange about four or five years
ago.
That was something that I had todo.
And it's always something that'sin the back of my mind because I
(22:32):
have to be mindful of what I amdoing.
The type of work I'm doing.
I can't have a job that'sparticularly stressful.
I have felt some type of wayabout that, because I feel like
in some ways, or actually Idon't feel like that anymore.
(22:52):
I felt in the past, in some waysthat, being disabled was going
to limit my career.
'cause I could not, maybe moveup the ladder and the management
or some other things, I guess itwould depend on the field and
the job, but that was a decisionthat I had to make me decide
that's not something that I wantfor my career.
I don't want the headache ofbeing in management.
(23:14):
I'd rather just stay in the rolethat I'm in as an individual
contributor.
There was a job offer thatpresented itself to me here
recently.
It was a great opportunity.
One of the things that was adeal breaker for me was they
want you in the office five daysa week, it was a longer commute
from where my current job is.
And I don't have to go therefive days a week.
(23:35):
The hours would be somewhatflexible, but not quite as
flexible as the hours I havenow.
Thinking about maybe if you'regoing to switch careers,
thinking about what does thehealth insurance and stuff like
that looks like if you'rechronically ill, you probably
have more doctors appointed.
Do they have FSA HSA, to makethose payments.
What is the prescription planlook like?
(23:57):
What does the insurance cover?
Will it cover those additionaltreatments that you need to take
or experience or.
One thing that was a big dealfor me was I don't like
insurance that needs referrals.
I like open access.
I'm not going to do an HMObecause I want to be able to see
the doctors that I want to see.
So with all of those unansweredquestions, I had to take a step
back and assess the opportunityoffered to me and I ultimately
(24:20):
chose to decline it.
It just didn't seem like a goodidea for me to turn my whole
life upside down for thepotential.
Of a new position that may ormay not further me along in my
career.
Does that mean that it may takeme a little bit longer to get
(24:41):
where I need to go or maybe makethe salary that I would like to
make?
Maybe I don't know, but thatwasn't a chance that I was
willing to take because it wastoo risky.
All those changes at the sametime could have put me in a
flare, could have caused me tohave setbacks with my health.
And at the end of the day, myhealth is more important than
(25:02):
anything else in this world,because it's all that I have.
So is that all of that to say.
You will have to make certaindecisions in your life as a
chronically ill person, thateverybody else may not be happy
about.
It may impact other people, butat the end of the day, do what's
best for you and your conditionand your body never have I been
(25:26):
in this situation where choosingmyself was the wrong decision.
We all want to live long,healthy, prosperous lives.
So that means that we have tomake the choices right.
Remember to do who is the bestfor you?
I'd have to say overall.
(25:46):
This journey has been aninteresting one.
I am at a point where I havegotten my condition to a point
where it is manageable.
I only see my doctor once a yearfor my physical.
I see the rheumatologistsprobably a little bit more often
than that, but on a as neededbasis.
And that was really throughtrial and error, trying a bunch
(26:09):
of different things, seeing whatworked, what didn't work.
And then adjusting as needed.
I weaned myself off ofmedication.
I want to say the end of thefirst year, I don't take
medication regularly anymore.
That was a choice that I made.
And my doctor, when I, broughtit up to her, she said you did a
great job of doing it on yourown.
(26:29):
The intention was never for youto stay on those meds forever.
That's another thing.
A lot of times we get caught upin, I don't want to take,
certain medication, sometimesyou're in a situation where you
may need it.
The point is to feel better notto not take medicine.
If you have concerns about themedication against you, your
research, look at the sideeffects.
(26:51):
See if the benefits of seeingtheir medicine outweigh the
cons.
See, if it works for yourparticular situation, some folks
just don't believe in takingmedicine or they feel they do
better without maybe they dobetter with holistic methods and
remedies.
But even with that, there'sgoing to be trial and error
(27:12):
until you find what works foryou.
Be open-minded be willing to trynew things, use the resources
available to you.
Don't be afraid to ask for help.
Outsource and delegate where youcan remember money spent is an
investment in your health andwellbeing.
(27:33):
And don't forget you're doingthe best you can.
Everybody's not going tounderstand or care.
And at the end of the day, dowhat's best for you.
If you are a spoonie, like I am,nobody else can understand what
it's like to live in your body.
If you feel like you want toshare.
You want to advocate, especiallysince may is fibromyalgia
(27:57):
awareness month.
The actual day was on may the12th.
Today is the 27th, which iscloser to the end of the month.
As I'm recording this, do what'sbest for you so that you can
feel better and live as close aspossible to a normal life as you
(28:17):
can.
So I know that was a mouthful.
I hope you all found this top10, helpful for whatever your
disorder may be.
Chronic illness can be a widevariety of things.
Doesn't just have to befibromyalgia or lupus or
multiple sclerosis or whateverother disorders are out there.
(28:39):
Depression and anxiety orchronic illnesses, diabetes,
high blood pressure, all ofthose things can be chronic
illnesses and they impact yourlife on a day-to-day basis.
But I hope you found this top 10list of things.
Helpful.
Thank you for listening.
If you made it this far to theend and before I go, I'm going
(29:01):
to leave you with an affirmationas always.
I affirm I will do what's bestfor me.
Thanks for listening.
Bye-bye.
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