Insights for Living Well with Chronic Illness, November 2019

Good evening my name is Tahlia Dostal I’m
the education director here at the Bateman Horne Center and I want to thank
you for joining tonight’s session where we are joined by Linda Milne a longtime
community member of bhc as well as a panelist here who are going to discuss
how to live a fulfilling life while living with a chronic illness just a few
housekeeping items this is a recorded session and if you happen to miss this
for any reason it will be posted within 72 hours on our homepage
and it will be posted tomorrow morning on our Facebook page so please feel free
to share it with other people and if you have any questions you can use the chat
box on your little side column there just type them in and we will either
hold them till the end or if it’s a good time I’ll weave it into the discussion
I’ll turn this over to our host Linda thanks Tonya speaking for all of us
we’re delighted to be here at the Bateman horns Education Center I want to
welcome not only those that are here with us but those joining us on Facebook
and those that will be viewing this on YouTube at some future point tonight we
have a panel of three plus me and will be answering a few questions that offer
a look at how each of us endeavors to have quality of life despite living with
chronic illness my name is Linda Milne mecfs has been a part of my life for 22
years forcing me to leave the business world
very prematurely each year I still experience periods of being bed bound
house bound and less functional but I’ve learned how to adjust to those flares
even relapses and still have a quality of life we all know good health makes life a lot
easier more predictable and offers a lot more options on occasion I have asked
healthy people just because I’m curious how important is your health to your
quality of life in my experience the answer ends up being something like this
if I didn’t have my health I wouldn’t have anything well we know full well
that chronic illness does imprint our quality of life so we recognize that
comments like that they do have a ring of truth but fortunately for those of us
with chronic illness and who have impaired health this is not the whole
truth I hope the hour that you spend with us
this evening will contribute even in a modest way to your quality of life I’m
going to direct questions to my three panelists and then as the last person on
the panel I will briefly comment to the questions as well we’ll manage our
program with the help of a time keeper panel as each of you answer question
number one would you first take one minute and introduce yourselves please
include the illness that you’re dealing with or the illnesses for how long and
add anything else that you would like to share with us so with that we’re going
to get started the first question has three parts first of all please tell us
how you measure quality of life would you then share what feature or features
you most miss in your life due to health limitations and then what
have you brought into your life to replace the important features that
you’re missing Sarah I’ll turn to you all right thanks Linda my name is Sarah
Hymas I am 35 years old I have three kids their ages are three five and seven
I graduated from Brigham Young University in 2008 with a degree in
English literature and I would really love to go back one day and get my
master’s degree so that’s something on my bucket list I love to learn to teach
including working within my community and in serving in my church I’ve been
diagnosed with a number of diseases in about 20 years I’ve been struggling with
health problems I felt like miss most pertinent to this
conversation would be fibromyalgia chronic fatigue syndrome pots which is a
heart condition and celiac disease so that’s kind of my brief intro and then
answering your question I feel like everything boils down to choice for me I
like a lot of people I you know I want to wake up every day and choose what I
do and I I think that’s how I measure quality of life it can be problematic
for me pretty quickly as I’m typically fighting a lot of pain and fatigue I can
become overwhelmed with the daily choices that I need to meet just to
survive so there’s definitely a lot of tension there but in essence I like the
idea of waking up every day and feeling like I can choose what I’m going to do
features that I miss because of my health limitations can often fill
endless I miss being able to express what I really mean
my brain is often fuzzy or numb or in contrast overwhelmed by external stimuli
that I can have a hard time articulating myself and connecting my thoughts the
way that I would like to have them cannot verbal expression is really
important to me I’m a classic revert although through the years I
think I’ve realized that I have a lot of introverted qualities that have been
enhanced or exacerbated by may illness but overall I love to talk I love to
connect with people I want to hear what they have to say and I also think that I
associated a large part of my identity as a child a teen a somewhat
academically adept and being able to be well-spoken most of the time I don’t
feel like I’m that person anymore or the the amount of energy and effort
that it takes to be that person if that energy doesn’t feel worth worth going
for I miss being able to command my body I miss when I’m relatively healthy I
love the feeling of waking up in the mornings and feeling like anything is
possible I’ve had to make major shifts and my mental framework to realize that
all is still possible just in ways I may not have imagined and but certainly my
life goals have changed I think that a big way that I’ve managed to replace my
issue with verbal communication that I’m struggling with is that I can tell that
people around me they love me and they see me and that is a big deal for me I’m
very blessed that from day one I have family and friends who just love me so
much and care about me and in terms of being able to command my body the way
I’d like I think most people can’t command their body that the way they
would like I think people are dealing with problems in lots of different ways
so yeah I think isolation is easy for me to experience when I stop communicating
with others and I think that’ll be fun to kind of talk about later on but yeah
I like interconnection okay thank you hey my name is Peggy Cooney I am 57 I am
a grandmother of four we have three daughters and three businesses going
right now so it’s very demanding to actually command what I’m trying to say
is difficult especially in business there’s a lot of
pressure I rely on family members that help me out tremendously with that task
when I get the brain fog because I have chronic fatigue I have fibromyalgia and
diabetes so I deal with one of the three every minute of the day and sometimes
all three at once and so when my brain fog gets so bad I can’t do our books I
have to walk away and it’s really hard because I’m so used to doing that all
the time I was very good at all of our legal all of our financials I took care
of everything and now I have to ask for help and that’s the hardest thing for me
is to actually ask someone to help me do something I already know I can do and in
my mind I can feel it and see it but I can’t actually do it and so that is very
difficult for me some of the things I’ve had to change in
my life because of this with the three businesses and the family because my
family is very important to me I’ve made them number one I’ve made memories with
the grandkids and the children to be number one priority so if moms in bed
they know mom is down they they’re welcome in my room at any time and they
know that text messaging is one of my high priorities with family and friends
if I can’t get out to see someone I’m texting to find out how they are I have
tried to turn it not towards what I’m feeling but what others are feeling and
trying to help them out and it makes me feel better about what
I’m doing and how I’m feeling so if I can send a note say hey I’m thinking
about you and make somebody else’s day that’s what I’m trying to replace with
what I can’t do and not say I can’t do this anymore because I still can do I
just can’t do as much I just have to take it
segments at a time yeah where I’m at right now thank you I’m
Hannah Powell I’m 22 and I’m finishing my last year at the University of Utah I
got sick about five years ago but I just got diagnosed this year I have
fibromyalgia mecfs pots and endometriosis I measure quality of life
by doing things that I love to do which is very hard with these illnesses I was
an athlete for a long time played college sports went to schools worked
during school and recently it’s been like they’ve said it’s kind of hard to
frame our thoughts into what we used to do I I miss now just be able to go out
and do think it’s not like a 22 year olds would do I have great friends but I
do see you know I’m get to go and do things and I kind of had to take a step
back just because of my health limitations but I have gained a lot of
friendships through this illness and a community of people who have the same
thing and it’s actually been pretty great the people I’ve met through this
and I think that’s something that I’ve added into my life um to replace things
are not lost thank you so I’ll I’ll answer the questions also it might be a
little easier for me because I made the questions the way I look at quality of
life is are my basic needs met can I still meet my basic needs
am I still optimistic about life do I have the desire and ability still to
continue to learn do I care about others do I have a willingness to contribute am
i still focused on living a long life I miss most the business world I love the
hustle and bustle the commercial life and I’ve been out of it now not by
choice for over 20 years and I miss it terribly it provided financial security
for me and it provided opportunities for personal achievement as a younger woman
I saw myself reaching this part of my life and travelling everywhere and
living life in a very extemporaneous impromptu way those pieces are not
possible when I lived in LA I experienced earthquakes and wildfires
firsthand more than once and the same is true living in Utah so I decided I
needed to learn how to prepare for disasters so I took this on as a
learning project to try and get my cognition back so I that that led to
lots of years of learning and actually lots of years of volunteer teaching on
those various prepare topics I go to businesses I work with families and I
work with community groups and that gives me I
connection to what I had left behind in the business world every time I go into
a business to be able to talk with them and help them prepare their business to
prepare for a disaster I just I feel at home I think oh I’ve missed this and it
feels so good to be here now volunteering has not benefited me
financially at all but it is a rich and satisfying part of my life it is a
source of personal achievement and gosh even a few community recognitions along
the way the next question is do you have people in your life that contribute
positive energy and support to you what do you do to keep them engaged in your
life and do they enhance your quality of life all right well I I have an amazing
amount of people in my life I’ve been really really blessed my whole life that
I just have great friends and family but I’ve definitely had to work for the vast
majority of those relationships since becoming ill I think it’s just so easy
to get exhausted with people when I’m so exhausted with myself so the vast
majority of people in my life though do enhance my write my life greatly I do go
through patterns of struggling with family members or friends that want to
know a lot about my different diseases or where I stand with diagnosis or what
doctors I’m seeing and what therapies I’m trying and that can be taxing for me
especially if I’m in a flare the amount of energy that it takes for me to have a
simple conversation is a lot so if I’m trying to talk about complicated medical
issues it feels like a big deal however I am able to see that I really just feel
like people’s intentions are good and they’re asking those questions out of
love and out of friendship and I can see that I have not always kept my
friends and family updated and informed of what’s going on with me out of
exhaustion confusion wanting to keep things positive i’ve also in recent
years felt like i’ve switched and i’m talking about my illnesses way too much
and i feel like i’m just a little bit out of balance at the moment I realize
it’s such a serious a major part of my identity but I don’t want it to become
everything or else I feel like I’m gonna go insane but very grateful for people
in my life that remain positive influences I do occasionally have times
where it does feel like you know I need to just put up some boundaries and let
people know where I’m at and that’s I think that’s been really useful for me
great thank you I have amazing people in my life before
the syllabus I didn’t I didn’t go out they didn’t do a lot of things only just
with family now I’ve got a big support system I have gone out and talked to
people I’ve been meeting people and they know what my limitations are so when we
travel because we do travel a lot with our businesses they know when I start to
go down so they’re having a flare-up at one of our meetings they’ll ask me to
sit down that everybody is aware and they are like can we help you and I just
tried to make them aware of what’s going on so the ones closest to me know those
signs and they just have to look at my face and they can tell which is a
wonderful blessing that I have with my family generally enhancing more of the quality
is just I find when I help others and I’m talking to others that have the same
problem or have needs that helps me to try and change my mindset so that I can
do more for other people that’s my biggest goal is to help others and see
what I can do for their struggles that’s one of our family goals as well
right now we’re working on it as a family to see what we can do to help
other people instead of saying I want this I want that what can we give for
somebody else including the grandkids that are under 8 so we’re looking at
difficult things that I never would have thought of
so these diseases have actually slowed me down I used to work in one day three
three jobs before I was married and it would just be the whole center of my
life traveling we have to take it slower before we could just go go go and drive
until we stop driving and find out where we landed now we have to kind of stop
and take a break walk around for a while give myself some
relaxing time once we get to our destination and basically just helping
everybody and the family support I couldn’t do it without him I’m very
blessed that way and I think I’ve become pretty blunt from this illness so I’m to
keep positive energy in my life I really don’t spend energy on people I don’t
that don’t contribute to that so luckily my my parents and my roommate’s and my
friends are probably some of the most supportive people in my life
they’ve even when I wasn’t diagnosed four years and doctors were you know
telling me things were in my head they were always there believing me and I
think that’s like the most positive thing that I can get is just for someone
to believe in what’s going on I try to keep everyone accurately informed but I
realized at a doctor’s appointment I was saying all these things and my mom was
like I’ve never heard you say that before and I just because there’s so
many symptoms that come with this it kind of feels a little crazy or annoying
to you know tell someone who’s been supporting you the whole time kind of
everything that’s going on with you but you know they’re really great and if I’m
in flare you know they do what they can
yeah and I’m just I’m really lucky to have those people in my life
thank you from the beginning of my illness it has been my friends who’ve
been the core support for me it wasn’t an easy thing for my family so I really
have turned to friends and it’s been that way for decades and they are still
there and I just seemed to keep adding to that group I I would guess that
friends are my most precious something in my life well I can’t do outdoor
activities you know Mike I watch people play pickleball and I hear about people
going up the trailhead you know all the way up to some body of water that I
don’t even know about in our mountains and I think oh I would love to do that
well I can’t but I can participate this way I get in the car I ride to the
trailhead and they go do and I sit in the car and I read or I have my iPad
with me so that I can be a kind of a part of it but I don’t hold back the
plan of the group which is you know to head to the summit so that’s one way
that I I keep a connection but I keep my activity real for what I can do and can
do and I find that I can find sedate ways to connect to people even people
that are really active and and athletic and I love my friends who are more
cerebral I love discussions I could sit for hours
and talk about almost any talk of topic you know I remember when I was a debater
in high school along
time ago you had to take both viewpoints of a question and so I’ve grown up kind
of being able to discuss almost anything from almost any point of view and find
it thoroughly and enjoyable so that’s kind of a substitute activity that has
become really part of my life loving friends are an enormous contribution to
my quality of life I do keep them informed and I usually don’t talk about
the detail details I wait until I can do a summary and say oh these last two
weeks have been a bit of a challenge but I seem to be on top of it now I kind of
approach it that way unless I’m in a position where I really need help and
then I’m totally willing to to put it out there and and ask for help so I
guess that the bottom line is absolutely my friends enhance my quality of life
it’s something that I notice almost each and every day and I am so grateful so
panel two to move to a little bit different viewpoint have you noticed
that negative people tend to be attracted to us when we’re most
vulnerable not just in our illness but just in in life itself and that negative
people can degrade our quality of life how do you handle people who weigh you
down should you have people like that in your life or wanting to be in your life
and what do you do with the people who make you feel less than well I feel like in my life and
negativity seems to breed negativity and positivity breeds positivity and they’re
both contagious for me and they affect me tremendously especially during a
flare during flares I have a really hard time not swallowing what people say to
me some you know I if I perceive it as negative if it’s directed personally
toward me I have a hard time not swallowing that I’m very sensitive and
my health issues have increased that sensitivity learning to compartmentalize
has been really important to me that’s kind of my number one goal right now
because I struggle with that I look at the big picture so much that sometimes
that gets overwhelming but I was just thinking about this the other day my
husband this can be something that drives me so crazy about him and boys in
general they’re so good at compartmentalizing but I really do think
it’s an important part of not being driven mad by all these serious
illnesses and I think it’s what has helped us and our marriage to be so
strong is that he is able to kind of separate these issues my intention and
my actions or my words and there is still accountability for me if I am a
negative person and I still think there needs to be you know accountability for
others when they’re acting negatively but I also think that the only person I
can control is me so I just try to focus on what I can do to bring positivity and
light and love into a conversation if we’re talking about doctors that seems
to be a whole nother story for me I have trust issues with doctors I don’t tend
to like doctors very much and I remember when I was diagnosed with silly eye
disease at the age of 17 this is you know more than 20 years ago one of the
first things that my mother did was to contact my gastroenterologist to it the
time had told me I was probably faking my illness and that it was in my head
and I was just a really high achieving student that just kind of was cracking
under the sure so I still think about that did I
cause these diseases to happen that’s really run deep for me and I kind of go
back to that but I do I do think for the most part we haven’t set up doctors to
be in a safe place where they can really say things and give us all the quality
attention that we need so anyway but for the most part I’m again I’m lucky I just
don’t have a lot of negativity in my life
that’s wonderful thanks Sarah I do have a few people in my life that I’ve
identified that are negative that try to bring me down so when I do have a
flare-up I try to avoid those conversations in a flare-up and I take
them very personal and it’s really hard for me to react to what they’re saying
and so I’ll try like the next day after a flare-up to give them some positive
feedback but I just keep them at a distance and I’ve also learned that
every day I do something positive I have a friend who does personal coaching and
he’ll send me a positive 10-minute little spill on somebody in the state or
outside of the state that they’ve done positive that there’s positivity
everywhere so he’s trying to help me build up that positive in me so when
somebody does have a negative that negatives not coming down and I’m not
putting myself down and saying oh yeah I don’t deserve to have this because I do
and that’s one of my hardest things is to say hey I deserve to do this I
deserve to go here I deserve to have you know a quality of life like everybody
else I deserve to go on that boat ride I you know parasailing whenever our group
may be doing at the time I have a 72 year old friend of mine who hikes three
to four miles a day and it’s every day and I wish I could go on hike with her
so she sends me pictures of her hikes with her and her husband so that way I
can kind of see what they’re doing enjoy the same things and then I can go
walk around the park with the grandkids or you know get out walk around the
block if I can and just trying to keep that negative away and try to just bring
the positive in to the world because the more positive you are the people around
you will also be you’re attracted to that and they are to you so that’s what
I try everything thank you so this is something I really struggle with
especially with I feel like doesn’t give you a break it’s kind of like one thing
after the other but what I found is laughter is something that really helps
me and you know people I can kind of vent to which my roommates are amazing
and we kind of will have like these little vent sessions at night when we
all come home from work or school and it just kind of make a joke out of kind of
the mean things that people say about you know my illness or something that
happened to them that kind of just lets me you know throw it over my shoulder
and get over it I’m trying to stay positive thank you well I’ve learned to
jettison negative negative people I move them out of my life or I move them to
the back 40 and it’s not out of a malicious feeling toward them at all
it’s just that I guard my quality of life
very very ferociously and I know negative people can erode it you know I
think I probably have enough in fact I know I do I have enough life tools over
the years that I could help negative people improve their outlook somewhat
but generally I decide not to spend my
energy on that there was a time in my life when I would have felt very
enhanced in doing that that it would have energized me and made me feel great
to put some effort into someone who was really suffering from negativity that’s
not my viewpoint now I I separate from negativity but one tool I have used
successfully on several occasions I will share with you if someone is negating me
or minimizing me I say something like are you aware that what you just said
was unkind in the extreme and it really hurt my feelings and I will tell you
that I have seen a few people self-correct almost instantly as if Wow
I didn’t realize I was doing that and that helps me remember that not
everybody is negative to their core maybe negative because of circumstance
or something temporary that doesn’t work for everyone but I have made the policy
in my personal life that I do better with either positive people around me or
– or by myself as opposed to inviting negative people into my world so panel what is your greatest present
time challenge to living a life of quality I’m having that panic moment
because I didn’t apparently print off this question like oh gosh this will be
a memory so be wonderful um I assume what you
mean by a greatest present time challenge is how you know it’s so hard
when you’re feeling sick and yucky all day to get done what you want to get
done in your life is that kind of what you were going for with that sure I I do
feel like there are so many things that I want to accomplish in my life and
there are so many wonderful people that I am surrounded by that are doing big
important things and so it is easy for me to compare and to feel like I don’t
have the time that I want because I need to just rest all the time and relax and
take it easy and so that is definitely a big challenge
I have very young children right now and so they require a lot of time and care
which I love doing but I think it’s just realizing it’s okay like it will get
done when it gets done I think that’s been liberating and freeing and I think
I’ve been able to incorporate that into my life fairly well I’ve been dealing
with this for a long time though so it’s been a lot of years it’s been a process
thank you I have about the same thing it’s the challenge of getting everything
done in a 24 hour period when I can’t do that and then I get down on myself and
say you know I should be able to do this I’ve tried to do this I’ve done it
before why can’t I do it now that is my biggest challenge is myself actually
trying to keep myself going knowing that I can clean a house but yeah it takes me
a week to clean the house that were before it was like two hours and it
would be done and it’s like I need help and asking for help is the hardest thing
for me because I am very self-sufficient I was single for many years and so I
it’s hard for me to ask it’s hard for me to tell why I asked my children can you
please help me with this I can’t do this right now saying those I can
it’s very difficult so that’s my biggest challenge right now and my biggest
struggle is saying I can do and do it just a little bit different it may be
slow but I still do it hmm thank you my greatest challenge it’s
a little bit more wide view right now just cuz I’ll be graduating in May it’s
hard for me to look positively at my future just because I don’t know what
that’s gonna look like yet and it’s not what I had expected it to look like like
I expected I’d have a full-time job that I’d be able to work through school and I
and I go to class and I look around all you know my classmates and it’s it’s
really hard not to get down on yourself and you know like why why can’t I do all
the things everyone else is doing like I had to take longer for school because I
couldn’t do as many classes and um just kind of letting myself be you know okay
and accepting that it’s gonna take me longer and I’m gonna have to you know do
accommodating things but that’ll all get where I need to be okay thank you for me
my biggest challenge is that injuries and other health matters just seem to
come along with life it doesn’t it doesn’t really really stop but here’s
the real truth my biggest challenge is aging when I develop this illness I was
a senior already and I’ve had it a long time so I am a woman of a certain age when I was younger I I thought I only
saw my my health problem in the eyes of mecfs it didn’t occur to
me that as I got older that things happen to aging bodies and that you can
that other illnesses come and that other and that injuries come to pile on top of
it I thought my biggest challenge will always be this illness and if I can get
on top of it I’ll be on top of it well I hadn’t taken into account that the years
go by and our bodies don’t remain static especially when they’ve been damaged by
chronic illness so I was not aware enough as a younger woman how a teen
would affect my already challenged body so I would say that keeping a light and
pleasant attitude about getting old with and having health limitations is
probably my greatest challenge so panel what do you currently see as your
strongest assets or tools oh I’m so ready for this one okay I’m gonna go as
quick as I can I have a myriad of tools that I’m using right now and you guys
can tell I’m in a happy place I’m in a place of remission so I’ve got a good
current cocktail of good health right now I think number one is my faith and
my participation in my church that’s always been my number one priority and I
expect that I always will be and it grounds me and it helps me to fill sane
I struggle when I’m in such a significant flower that I can’t meet
with my local congregation but anyway that’s that’s a big deal
I also love to exercise and I feel like overall it’s paid dividends even though
it seems like a joke because we don’t really feel like exercising and
exercising can seem to drain us but I’ve found things that don’t completely suck
the life out of me like swimming yoga Pilates really restore
soft simple things I take Western pain medication and sleeping medications when
I need to I have a great massage therapist that I see every week and a
really bad flare and every two to four weeks if I’m in remission I have a I
went to a pain cognitive behavioral specialists in the last year and we went
through a 12-week program with him and that was just amazing
I have cleaning ladies I live a very minimal life in terms of possessions and
decorations around my house I stay organized
I have fabulous girlfriends an extended family my friends mean a lot to me too
and my family I have an amazingly supportive spouse who I leaned on
heavily and I rest a lot when I need to and I do let myself go manic a little
bit when I am in a good spot because it helps me feel like I am living a normal
extraordinary life I go and see different doctors and try a lot of
different treatments when I am in a time of remission the community that I
connected with I have life coaches I have a couple of them that I talk to I
have a nutritionist then I talked to on a daily basis and to make sure the
diabetes is under control make sure the fibro is working and
everything that is the medications they all coincide with each other’s with my
doctor’s I finally found this wonderful place with Bateman horn Center it’s
amazing if I hadn’t found it I don’t know what I would do because it is one
of my biggest tools and I’ll do anything to keep it so it’s at the top of my list
there my husband is phenomenal he deals with a lot of stress with me going down
and going okay I can’t do this right now can we put this off for a while and you
think no it has to be done now but he understands so he’s like you go rest
I’ll take care of it which is amazing he does all the cooking now so I don’t have
to do any of it he’s fabulous family is the number one and learning to
put as my brother told me one time choose what you want to do you only have
so many marbles for one day don’t don’t overextend it don’t push yourself too
hard like you normally do use those marbles wisely great thank you
and so I’m a little bit of a difficult spot with my illness right now just kind
of trying to figure out what works for me so I only have a couple that I’ve
that I really stick to the first would be my parents they’re great they meal
prep for me when they can they let me move back in with them a couple times
and they’re just really great and then also learning to listen to my body has
really been helpful I love to read all like the journals not come out about
these illnesses I love to be informed I’m gonna kind of be loud and advocate
for the people that go through this and that’s kind of something that that keeps
me going also breast if I if I didn’t rest I
don’t know if my quality of life would be great so it’s always something I try
to remind myself to do okay thank you I’m grateful that optimism comes easily
for me I don’t need to work at it I have I it seems to be in my DNA that I have a
an upbeat optimistic viewpoint about life and I’m grateful that I have it and
that I don’t have to work for it one of the things that is a marvelous
help for me is that I know I am not just a body I am at core and eternal being
and this is a personal certainty not a religious one but it is a certainty and
it gives me a unique foundation to approach my health I feel like we’re a
team me and my body and I feel like I’m in charge and my job is to help my body
be as healthy as possible one of my goals is longevity so most of the goals
that I said are are geared towards a long quality life I have a thirst for
learning I devote time to acquiring knowledge and just practical know-how I
love the Internet it is my link to continuing education I’m watching
webinars and podcasts and streaming now I would much prefer to be at the
University in the classroom and most universities including ones and in our
valley offer classes free to people of a certain age and I would I would love to
be there with students even if they were you know 1/2 or 1/4 of my age I would
love to be there with them in a classroom and feel that energy but I
figure it’s not a lot to give up that I have the internet and I have a
connection and I use it all of the time and I use it with gratitude the reason I can’t go to classes is kind
of you’ll understand this I can’t deal with the parking distant from the
building and the walk that it takes to get to class that is a barrier that is
too big for me to overcome at at my stage of Health so I just I stay home
and I’m grateful for the Internet I have a wonderful bright blue car and I
haven’t lost it in a parking lot since I got it it has made my life so much
easier I can go to to Costco or I can go someplace where you you know you could
lose your car forever and I know to look for my big blue car and there it is I
can find it I’m not wasting my energy walking up and down the parking lot
I have alarms on my watch that remind me to take afternoon medicine without it I
would never remember to take it so I’m this has been a little tool it was very
helpful to me the hour that I spent before I came here I spent with a
cognition therapist and I actually have more than one at this time and I’m
learning new tools to maintain my quality of life and to identify where my
weaknesses are in cognition and and where my strengths are and I I find out
I do have some strengths for my age which I was happy to learn but I I redo
things everything can be an asset in my life and I found in my life if I
approach it with a realistic point of view yesterday I couldn’t put vacuuming
off and longer I have a small home but it took
me a couple of hours to vacuum that tiny home because I have to break it into
little pieces when I exercise I break it into little pieces and a 20-minute walk
of a mile can take an hour and 40 minutes because of the rest that I do in
between sessions of walking so the assets and tools that I love are
learning how I can do the things that are important to me but to approach them
differently realistically for my age and my state of health I’m I’m grateful for
my life I’m grateful for everything I learned this illness has brought me
lovely things I didn’t know any of these three people I had never met Sara Peggy
or Hannah and I’m so glad for the opportunity to have met them and to have
had this opportunity to share this panel with them thank you so much for being
here with us but I wanted to share with you some of the feedback that we’ve
received from Facebook so here’s just a few these are just a few comments that
have come in and I think that you guys deserve to hear them your honesty is
very moving thank you for being our voice thank you for being so brave and
speaking to all of us it helps to know you’re not alone thank you so much for
talking about these important topics thank you for being so brave and
wonderful questions wise answers thank you all for utilizing your energy to
share this information oh thank you so I thought that you might
enjoy hearing some of those because I definitely was touched reading them so
wrapping up our next session will be on December 4th where we will welcome Mary
Beth Raines who is a clinical social worker and licensed Marriage and Family
Therapist she will be helping us with support strategies for the holidays
thank you all for joining us thank you the Bateman horn Center VHC makes
programming and information available for educational purposes only not to
provide specific medical or clinical advice by receiving this information
from non VHC sources you understand that there is no provider patient
relationship between you and the presenter external views information or
opinions expressed during these events are solely those of the presenting
individual or individuals and do not necessarily represent those at pH C and
its employees BHC does not have any relevant financial relationships with a
presenter to disclose or conflicts of interest to resolve this session will be
recorded and published on BH C’s public platforms please do not disclose any
personal health information during this live event we strive to ensure the
privacy and respect of all participants are maintained during these
collaborative events thank you for your time and interest

Leave a Reply

Your email address will not be published. Required fields are marked *