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collaborative events this session will begin shortly good evening thank you for
joining our September education series I am Talia Dostal education director here
at the Bateman horn Center I’m excited to hear from our speaker this evening
clinical psychologist dr. Elizabeth Sherlock as she discusses living with a
chronic illness dr. Sherlock joined the Bateman horn
Center in the spring of 2018 and has had a successful career serving in the Navy
jag and later in the US Air Force as a military psychologist upon retiring as a
lieutenant colonel she has applied her work in nursing
homes jail systems and women’s shelters dr. Sherlock has both professional and
personal experience as a caregiver of loved ones with mecfs and we are
grateful to have her here today. Hi everybody
those of you who perhaps have attended our support groups know a little bit
about my history I’ll give you the 30-second version of my connection to
mecfs my son had mecfs for about 20 years and he died about two and a half
years ago at the age of 46 his dad had mecfs for about 20
five years and died when he was 53 and his grandmother had mecfs for about 40
years and she lived into her late 70s so the journey is different for everyone
and I have been up close and personal with mecfs for over 50 years and so I
decided to come and volunteer at the Bateman Horne Center and see what I
could do so every day is a chance to change your life this picture is
supposed to be a sunrise sadly all of the sunrise pictures also
looked like sunsets I couldn’t really find one that differentiated very well
but this quotation seemed inspirational to me every day in some sense is a blank
slate and you can choose within parameters of what you’re gonna do with
it and how you can change your life I’m going to borrow a lot from a book which
I have a copy of the cover at the end so you can write it down if you want to
it’s called you don’t look sick anybody ever had that comment for sure it’s by
Joyce C Lac and her doctor a doctor Overman who is a Rheumatologist and
although she didn’t have mecfs she had an autoimmune disorder in fibromyalgia
and lots of the same symptoms that people with mecfs has and she’s written
a very very good book about how she has come to terms with her illness it’s a
it’s not filled with a lot of platitudes there’s a lot of good stories in it and
we’ll be borrowing some of those but she divides her book into four sections and
I thought that was a useful jumping-off point for this talk first was getting
sick what happens when you first find out that things aren’t right second is
being sick how you start to come to terms with the
fact that you have a chronic illness third is grief and acceptance the things
that you’ve lost and how you come to terms with accepting those losses and
accepting your new life and finally living well and of course living well is
perhaps the most important part of this so that those are going to be kind of
the sections of the talk as we go forward so in terms of getting sick I
read a different book called in the country of illness I also have it up at
the end and although he didn’t have a chronic illness he had cancer and his
ex-wife died of cancer he is very entertaining writer and he talks a lot
about dealing with the medical system and here are a couple of the great
quotes from his book his very entertaining book if you want to read it
when we are sick or taking care of someone who is sick we feel as though we
are suddenly outside of the borders of what we consider everyday life and in
another place and he’s of course talking about going into hospitals I call that
place malady malady is another country scary and strange its border is only one
microbe a rogue cell or an accident away when we are scared feeling out of
control feeling like a unit on a conveyor belt of the medical industrial
complex grateful for the casual mercies of doctors nurses technicians aids and
receptionists and he describes a lot of these people and in very vivid and
sometimes quite humorous terms and confused by the rearranged relationships
rearranged relationships we’ll talk more about that with friends and family
members it’s easy to imagine being in a foreign land trying to learn the
language and customs calculate the currency and remem
the landmarks all the while suffering the ill effects from the local water you
know when you’re feeling sick you’ve you you have the least resources to deal
with all of this complexity and yet there you are so in the getting sick
parameter this is from you don’t look sick this is what the doctor had to say
he felt like the first thing that people need to do is free themselves from fear
again you’re in this strange country of illness and doctors and medicine and
you’re afraid people are afraid and so he has some suggestions about
acknowledging your fear what is your worst fear get it out there if you don’t
have a trusted friend or counselor then you have a journal but get it out there
you afraid you’re gonna die are you afraid you’re gonna be incapacitated
what is it and the more that we can we can speak these fears and get them out
of ourselves and an intent on paper or in a conversation the less power they
have over us and it it gives you a little bit of direction too to have an
idea what am I really afraid of here you know is it pain what is it so he can
think about that his second suggestion is to understand that the mind and body
are connected he said many of the people that he sees again he’s a Rheumatologist
what he calls the doctor of last resort and and he says if he tries to suggest
to people sometimes that that stress and the things that they’re thinking and
experiencing are making their symptoms worse they get very defensive he’s not
trying to say that your illness is all in your mind that is not that it’s not
what that’s about but if you think about it think about left the last time you
got very stressed you had an argument with a spouse or are you very
disappointed in a relationship those stresses
exacerbate your symptoms they make them much worse and so he does a lot with
trying to get people to realize the mind-body connection and that that
reducing those stressful interactions and reducing stressful attitudes all
those things are going to make your symptoms more manageable so the the
third one that he talks about is build a supportive healthcare team and become a
team player you know fine doctors that are helpful to the woman that that wrote
this book joy she has a thing that she calls her three-strikes so she’ll go see
a doctor three times and if he’s not receptive not helpful rigid has a
prejudice against her illness that’s it she won’t go again
and over over the years she’s built a number of different doctors that deal
with different aspects of her illness and that’s her healthcare team and she
she calls dr. Oberman sort of her coach he’s kind of the head and he sort of
runs the whole thing and it’s in the manner of like a coach and sort of helps
her deal with the other specialists and all of that but it’s a sort of a team
effort and so that’s what he recommends that you try and and think of your
doctors as a team and you know try and get them to communicate if you can with
each other or do that through you by taking good notes and having an agenda
when you go in and you know doing things like that so you get good care and I
liked his quote he says when illness becomes chronic it does require learning
to live with it however it does not and should not mean living with it alone you
need that team so another book that I found very
helpful is this one which I also have pictured the cover at the end how to be
sick by Tony Bernhard so she is an mecfs patient and she’s a very deeply
practicing Buddhist and so her book is very Buddhist inspired and it’s it’s
much deeper than the other book but some of the things in it if you’re not really
drawn to the Buddhist philosophy would be a bit challenging and so I’ve kind of
used you know some things from both in this talk but I thought that this
audience would kind of get a kick out of her list so when she first got sick she
saw three infectious disease doctors to ENT Specialists a Rheumatologist i mean
it sounds like a partridge in a pear tree right an endocrinologist a
gastroenterologist a neurologist cardiologist and two acupuncturists and
but I counted that up and that’s only twelve I think most of our patients have
seen at least 25 doctors 12 is actually a small number so I’m sure people in
this audience can relate to that and and also relate to the frustration remember
every one of those doctors there was hope this person will be able to
diagnose me this person will have if not a cure something that will really help
and probably didn’t happen so anyway that’s a that’s a very interesting book
too so back back from also from how to be
sick she says chronic illness forces us and
our spouses and caregivers to do a number of things things that we may not
we don’t want to do but we’re forced to first weather the relentlessness of cyst
symptoms you know that’s an easy little bullet point but when you think about
what that really means in terms of people’s lives you know those symptoms
they come and they come and they come and they wax and they wean and they
change and they they’ve just changed your life and so it’s a very relentless
kind of thing that for many many people doesn’t ever completely go away
some people have wonderful remissions but many people do not second people
have to come to terms with a more isolated life and this is one of the big
issues that comes up in the support groups and in counseling that the world
gets smaller because you’re not going to work anymore you’re not going out and
doing things and not very much of the world comes in you have to go out and
luckily we have the internet now so that gives people even that are homebound at
least some opportunity for example to attend the lecture like this that they
wouldn’t be able to do in person but still it’s a much more isolated life
third cope with emotional distress on top of all this on top of all of the
symptoms the pain in that and the brain fog and the nausea and all of the things
it’s upsetting there’s emotional distress as well and this often
manifests as fear about the future you know am I ever gonna get better
am I just gonna get worse how much worse you know what’s the endgame here
you know what’s tomorrow going to be like you know far future and near future
and met many people have a lot of fear about that next handle the
misunderstanding of others gee have any of us been there you don’t look sick you
can do this you know all you need to do I love a woman in the support group said
her doctor told her she just needed to drink more water and lose thirty pounds
and she’d be fine I that’s just one of the best ever of course that didn’t do a
thing for her and even doctors misunderstand friends misunderstands
spouses misunderstand people it’s very very hard for them to grasp the depth of
the fatigue and pain and and just general misery that people experience if
they haven’t been there it’s just really hard to grasp and so that
misunderstanding you know it can it gets worrying how much time do you spend
explaining to people and then you never know if they’re really gonna hear you
and and etc then you have to on top of that deal with the health care system
and deal with the disability system and deal with paperwork and deal with
appointments and getting to them and paying for them and all of that and it’s
not easy that’s not easy for anybody much less someone who has little energy
and brain fog and and you know they’re tired and they’re in pain and then they
have you know a Obi’s that they have to deal with a stack like this and go
through and so that that just exacerbates the situation and then
finally you’re forced to adapt to many unexpected and sudden life changes you
know things are going along and then suddenly boom they’re not the way they
were yesterday and that’s very hard for people
okay so being sick so this was at the heading one of the chapters you can
argue with the way things are you’ll lose but only a hundred percent of the
time so something to think about trying to accept the way things are okay more
of being sick from you don’t look sick so this was from the doctor he felt like
a really important first step for people is learn to manage your pain because
pain is just so debilitating it gets in the way of everything and so you know
medications rest massage hot baths whatever it is that that helps you you
know learn to take advantage of those things learn to manage them in an
effective way and you know learn to make the most of the things that will help
you decrease your pain because you can’t do anything when you’re in pain
second he says let illness be a life teacher you know realize that there are
things for you to learn through the process of this illness you know and
sadly many of them are things we don’t want to learn but think about your life
a lot of the things that really have taught us the greatest lessons are
things we didn’t want to learn you know when I grew up I had to learn how to
work ooh I didn’t like that that wasn’t fun I was a lazy kid and I have to learn
how to work and it was a painful process and so many of these painful processes
do teach us important lessons for life third he said don’t confuse making peace
with giving up and we’re gonna talk some more about grief and acceptance and
about not confusing the idea of coming to an acceptance of illness with giving
up because some people think well if I’m not by
this isn’t my enemy then I’m giving up and it’s not the same thing there’s
there’s a way to embrace your illness but not give up in terms of making the
most of every day so they’re kind of two separate things but but you know some
people confuse those and finally listen to your body and find your own balance
and as I talk with patients and as we talk in the support groups this is one
of the hardest things because learning to pace yourself
learning to slow down learning to find your own balance not looking out there
at what everybody else is doing you have to find inside of yourself where your
energy level is where your pain level is what you can do what you can’t do you
can’t please everybody etc etc and so this is a really
important one we’re going to talk about this later
a little more but listen listening to your body is really important and I like
this quotation the quiet activities that illness demands can give you the
opportunity to listen to your body differently I think that’s the key word
differently and more closely you might ask whether a symptom is a new problem a
variation on a past player or a variation on a past player are your
fears and anxieties influencing your disease or just how you perceive it in
other words if you’re feeling a lot of pain is it because you’re upset about
something is it’s not making it worse things like that and so you you have to
pay a lot of attention to your body okay and so this kind of went on and said you
need to listen to the external environment around you differently
do you have negative people in your life that need to be turned tuned
out and this is often an issue we deal with in counseling where people that are
not supportive but they’re people that are around so at what point do you just
say look I don’t need your opinion anymore can you pay more attention to
and learn from those people who are willing to support and share with you
and I think the idea here is to put your emotional energy into the people that
really support you and that help you feel better and to not put your energy
into the people that are negative and make you feel worse which part of you so
he he felt like there were this four basic needs that people had the physical
spiritual social emotional or professional and that they all they all
needed to be attended to so which one needs attention today you
know are you having a lot of physical pain do you need some kind of spiritual
inspiration are you lonely or is you know something in your social world not
right or is there something emotional going on with you or something with your
your profession or lack thereof are those the things that are weighing on
you today which one which one needs attention patients of mine who have
learned to listen to what their body is telling them come to understand they
cannot fix everything by just trying harder you know you’ve heard the old
line work smarter not harder and so I think that’s what he’s getting at is
when you just try harder you know that’s a place of tension trying trying trying
and tension of course does what pain fatigue it’s gonna just bring on all
your symptoms and so the trying has to come from a different place where it
does not produce that tension the next section we’re going to talk about let’s
move it along is grief and acceptance so people
eventually most of them come to some kind of acceptance of their illness and
joy in and you don’t look sick she feels like you have to go through the grief
process and I think this is pretty standard in psychology that you have to
really acknowledge what you’ve lost before you can really move on that you
have to sort of go through the grief to come out the other side and and I
thought this she really wrote a lovely description of what she lost she had
been a stockbroker before she became ill and she said in the months that follow
I’m no longer Who I am so that’s the thing who are you I’m no longer a broker
a businesswoman a working professional I can no longer proudly answer the
question what do you do I am just a daytime sleeper a doctor
appointment maker a brain addled person filling out paperwork
five minutes working in the garden and I collapse in pain 20 minutes at the
sewing machine and I am numb with fatigue everything I try to do is riddle
with mistakes because I don’t think straight I am lost I am no one I am
nothing I cry and I think most mecfs and many fibromyalgia patients have been at
this place where they just feel like if I don’t have the identity I once had
that I’m nothing and part of the problem with that is our society we’re a society
of doers you know we’re not like say Indian society where there’s a whole
tradition of meditation and and just being it’s like no the first question in
any social interaction what do you do not what are you and so we’re doers and
if you can’t do then what are you and it requires quite a redefinition
of who we are to move out of that doing mentality then she goes on in a very
real sense illness had taken my life away I was sentenced to live with
physical pain in real time indefinitely I could not work I could not even plan
my days I could not expect to be cured going forward how was I to rejoice each
day it’s a rich irony to learn that there’s a special piece to be found in
the journey through suffering because of this revelation I have come to see
myself so this is when she moved from grief to acceptance I have come to see
myself not as a sick person but as a person who enjoys a life that is full
and abundant I see myself as a healthy person with an illness so I thought that
was quite profound I appreciate every day and look for the good in it so how
did she do this well she has her top 10 list and you know we could spend an hour
on each one of these but we’ll just kind of go through them so her number one
thing is take care of yourself first and of course this goes along with what the
doctor had to say and and she had some some pretty interesting things to say
about that because we all we all want to help other people we all want to meet
other people’s expectations many of us have been mothers and caregivers and
spouses and we’re used to a lot of giving and the idea of moving out of
sort of that giving role and into it taking role is very difficult it’s it’s
not easy and taking care of yourself first you know let’s put on your old
your own oxygen mask you know on the plane many
people have a very hard time doing that and she she says when she gets when she
starts get feeling upset when she gets when she calls it in a muddle
she asks yourself three things one what is really going on here the answer is
not what I’d like or what I think should be or what I fantasize but rather the
result of taking an honest look at prison circumstances that are making me
feel stressed and uncomfortable so what is what is really stressing me out here
is it my expectations or is it other people’s expectations or something I
can’t do what what is it what’s really stressing me out
second what do I need to say or do to take loving care of myself
so when you’re in that stress moment how do you take care of yourself
how can you be kind to yourself and finally her third question is what is my
power for the good in other words what can I do that’ll make this situation
good and if there isn’t anything then she tries to extricate herself as
quickly as she so that’s four take on take care of yourself first second never
never give up you know certainly people get discouraged certainly it seems long
my husband’s mother used to say they’ve been married for 50 years she said it’s
not a long time it just seems long so it’s it’s a long journey and often it
seems very long but don’t give up learn to be honest about how you’re feeling
this is the oh how are you I’m fine you know we all want to be fine and it’s
sometimes very hard to say I’m not doing too well today or I’m really tired today
but I’ll try and go on with the meeting or you know whatever it is that you’re
doing learn to be honest with how you’re feeling
and forth enroll in the school of whatever works and in this she had a
discussion about just whatever kinds of treatments some alternative medicines
things like acupuncture she found to be quite helpful some some people find
different diets you know gluten-free things like that to be helpful just try
things and if something works for you great and I’m sure you’ve all
experienced this you know someone you meet someone you tell them you have this
illness they say oh this will fix you as if you’ve never thought of it and but
sure try these things the ones that work keep and the ones that don’t just walk
away from but she says you know whatever works continue to do it
v where make friends with fatigue so what does she mean by that she has an
interesting take on that so she talks about the fact that by that she can work
from 10:00 to 2:00 in the daytime and then by – she’s fatigued and she really
has to rest and so when she does things with friends she’ll say I have to be
back home or have to be back at the hotel if they’re out somewhere by 3:00
because I have to rest and she says interestingly many of them say oh goodie
do we get a rest period – that everybody needs to rest you know that we’re just
such a driven population and then she says one of the things I often hear when
I speak at patient conferences is the difficulty people have slowing down they
feel that if they don’t do everything they used to do the illness will have
beaten them and she says she had a friend that really saw this illness is
the enemy and just she just had to keep fighting and she says I tried to tell
her the illness was part of herself not a separate
thing and not her enemy if you will just give this resting thing a chance I
guarantee you’re going to love it I can testify I’m so glad I made friends with
fatigue and I think this is part of the problem we have with pacing what pacing
is about is learning how much you can do and resting when you need to but that
doesn’t go along with the with the outward world schedule you know you have
to you have to have an inner knowledge of when it is that you need to rest and
then act on that don’t ignore it 6 was live as a child and what she means like
by that is just just be delighted in little things if you’ve had kids you
know sometimes you know you buy them the expensive toy and what do they like the
box they’re just little things it’s interesting online there’s a whole thing
of where you can watch people open boxes that people put these videos up opening
their Amazon boxes it seems ridiculous to me but apparently kids just love this
sort of thing and so that’s an example of seeing the world as a child just
little things that maybe other people don’t even notice you know a butterfly a
flower whatever that may bring you some delight just pay attention to those
things instead of just glossing right over them her seventh one was step out
of the box occasionally push yourself not not too
often but when you feel like you can push yourself to do something that is
that you keep that’s out of your comfort zone because you may find that this new
activity or meeting this new person or whatever really gives you a lift and so
once in a while you need to step out of the box her eighth one is search for
silver linings you know always try and look for the glass as half-full
side of things if you can and see what silver linings are there our ninth was
find a way to share your gifts you still have gifts and so even
if your house bound there may be ways on the internet or there very things you
can do we had one person in the support group who said you know she couldn’t get
out much but she decided to foster kittens because that was something that
she could do and I just thought that was very sweet you know so she’s got these
little kittens that she takes care of so there are things if you just really look
you can find something that you can do to share your gifts and her last one was
be still and I felt like this was very important and this went along with the
idea of the other the more Buddhist book which is all about being still and
letting go of all of our expectations and our desires and all that kind of
thing and and she describes a situation where she met a friend for lunch and the
friend’s daughter had chronic fatigue and she’s talking about you know doctors
and and she says the mother was focused on diagnosis treatments therapies
studies and causes of this etc and she says she says finally I reached out and
touched her shoulder and said you know if your daughter can embrace the reality
of this illness in her life and make peace with it she’ll have the
opportunity to learn at a very young age what most of us never learn in our whole
lives she can learn to be still help her do that and you will have given her a
really great gift so that was her last one be still if you still you can listen
to what there is in the world you can hear the unsaid you can you can feel the
turning of life in a way that people don’t when they’re just rushing around
and they’ve got the TV on every second and earphones in and looking at their
phone and you know they never take that moment to just be still and sort of
to really be one with life so that’s what she did to move from grief through
acceptance to living well finally I found this quotation that I
thought was very inspirational and it started with your new life is going to
cost you your old one it’s going to cost you your comfort zone and your sense of
direction it’s going to cost you relationships and friends it’s gonna
cost you being liked and understood but it doesn’t matter because the people who
are meant for you are going to meet you on the other side and you’re going to
build a new comfort zone around the things that actually move you forward
and instead of like going to be instead of liked you’re going to be loved
instead of understanding you’re going to be seen all you’re going to lose is what
was built for a person you no longer on let it go so that’s my talk and here the books I
put them up because I know that people are going to look at this online and
then they can find the they can find the references so do we have any questions and we have any questions from our
viewers we’ve had some great comments come in we have a lot of folks from the
East Coast that’s nice I know for myself I’ve already added the how to be sick
and you don’t look sick to my Amazon my Amazon shopping list so they are out
there we’re getting some thank yous come in Kourou good take just another couple
minutes here to see if anything trickles in well I’ll put in a little plug while
we’re waiting for our support group we have an mecfs support group that’s the
second Tuesday of every month and it’s online and then on the third Tuesday we
have a fibromyalgia support group and it’s smaller but it’s also very
interesting and so you know please join us for those you have to sign up ahead
but it’s free and it’s um you know everybody can join and you can talk if
you want or you can just watch whichever you know strikes you and and I think
people have gotten a lot out of them yeah there’s a lot of resources that
folks who joined share with one another and I know that those just continue to
be shared on and on and that’s that’s the purpose that’s good so if we don’t
have any questions I just want to thank you again for your time this was a
wonderful presentation we hope to see you all at the October 2nd session where
we’ll be hearing from dr. Bateman she will be discussing overcoming access and
barriers to care Thanks

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