"ME/CFS Miracles"

to the Opera Education meeting we are really glad to have you here my name is Lucinda Bateman and I’m a physician who takes care of patients with chronic diseases I’m also the executive director and on the board of offer the organization for education and fiber or fiber one out said oh my gosh the organization for fatigue and fibromyalgia education and research and I made that name up a long time ago so welcome to here and we have some board members here and many wonderful people will really like to invite you to our meeting tonight before we start I wanted to make a couple of announcements I want to tell you that there’s a flier of here if anyone’s interested for a project research project being conducted by a doctor friend Reaper who is the president of the International Association of chronic fatigue syndrome and he’s doing a nationwide study and if you’re interested in finding out about becoming a patient or someone you know you’re welcome to come get a flyer afterwards also wanted to tell you that offer is funding a conference you we do a conference every year or two and this year a conference is going to be specifically an education conference with mental health providers we’re going to bring mental health providers together and talk to them about how to deal with chronic fatigue and chronic pain when they’re counseling people about living with it so they understand the physiologic side that goes with the mental health side so you might want to be thinking about that learn about it on the offer website and direct your mental health providers or anybody you know who you think would benefit from coming to the conference it’s going to be in September so tonight we have the topic of our education being is called CFS miracles and this is a panel discussion we have eight nervous people sitting in front of you who I’m sure will be very humble about their accomplishments these are all people that I know very well because I have had the opportunity to interact with them as their physician and they all have chronic fatigue syndrome there are all kinds of miracles sometimes we think of huge miracles but miracles are relative right – to our situation and what I wanted to do was bring each one of these in to talk about something about them that I think is a little miracle or a big one for them to accomplish given their illness and their illness limitations so each one of us is going to share some of that insight with you and the way we’re going to do this is I’m going to do a brief introduction of each of their miracles and then we’re going to ask them some questions and hopefully we’ll address each question one by one on the panel so you get a little bit of idea of what it’s like for them to accomplish these miracles so I’m not going to spend too much time but our first panelist is sherry and she went on a vacation a wonderful holiday vacation when she thought she would never be able to do that again so she’s going to talk to you about that miracle in her life and I’m sorry but I wasn’t able to get all the things I needed to make her slide so love to get it from her in person well I thought these out of order so these are our panelists and add sherry onto that Bethany Joan Jessica Lauren Sharon Scott and Darlene and Bethany’s going to talk to us about not only she likes to make jewelry but she published a book John is going to talk to us about developing in discovering and developing an amazing new talent and being able to get back and do some education around it jessica is going to talk to us about creating a family starting from nothing to something very busy and demanding Laurens going to talk to us about how she accomplished the job that she’s still working on but completing her higher education and maybe a few other things Sharon is going to talk to us about the challenge of arising from very dire circumstances and specifically financial but also she’s she said it was okay to share this with you she’s really struggled with depression as a complication of her chronic fatigue syndrome so she’s going to talk to us about the miracle of her being here with us to talk to us about it after going through some of those very hard things Scott you may know Scott created the offer website and maintains it and he also created a website for my office so if you’ve ever visited either one of those places you will know that that is the work of of

Scott Darlene is going to be our representative someone who’s much much healthier than when she was sick so she’s going to talk to us about how she accomplished that miracle all right so here are our questions for our panelists and I’d like to start down on them and if you just remind us of your name when you talk tell us first of all what your health was like and this is just you know a little bit of a couple of minutes about what your health was like cuz we have all these questions to cover tell us what your health was like at its lowest point try talking so health it the lowest point that was a gradual process the rock bottom’s definition changed over twinning and I became ill in high school and couldn’t little through it I was one of those kids that figured out what I wanted to do really quickly really early in life I was nervous and go to college and get married someday after college and have kids so I had it all planned out well after struggling to struggling for a few years of college I was able to meet Jay with my sweetheart and we got married and I was working and not working just kind of you know the roller coaster where you push yourself that’s when you fall apart push yourself so you fall apart and the rock bottom the point came when I we had been married for a few months and I was I was working a little job in a small town while driving there their meals on wheels man and it I loved the job and I loved being with the seniors and they became so sick that I couldn’t do that anymore either and so it kind of became what’s the point can’t work can’t go to school you know everything I’ve tried to do is just kind of crumbles like sandstone how many hours should be working doing that oh it was two days a week for two to three hours so I was I wasn’t able to sustain that level of work my name is Bethany on my first days of the the pain that just reaches a point that it’s all my brain can handle this it’s really hard to concentrate on anything else the weakness in my muscles is so bad that I shake when I exert myself even just a very little bit my concentration and memory attention is like non-existent and my mind feels like it’s floating around the ideas I’m trying to concentrate on remember the only thing I can do on these days is recline on my bed and watch movies sometimes that’s about it tell them what your most effective the most activity you can do is physically right now or save your worst well you kind of do sorry never mind I’m jumping in your did great I’m jumping ahead any questions all right let’s keep going oh I guess the worst I ever was I kind of went in a period of one day for being very very active very active to basically be bedridden I just got the flu really bad and I didn’t ever get better so I spent about two years pretty much flat on my back and at first I was afraid I was gonna die because it just felt like your home life force had been sucked out of you and all the dramatic

but that’s where I was and so I kind of came to terms with that my children but then I realized that I might have to live like this and that would be the partners because you really don’t have much of a life so I could do self-care pretty much I was at home in bed and that lasted for about two years at least so that was my worst point buying I was not able to get out of bed and if I did it was her just barely getting anywhere like maybe to the kitchen to grab a protein shake or something than that right right back to bed by the bar TV was downstairs and TV wasn’t that much of a problem because I had so many I was so sensitive to noise in the light watch TV very much so that’s and I had just lost and that my boss blank I was dead I was raising four kids as I raised my four teenagers from death I didn’t think I could only get out of bed to go to the bathroom or to go to the doctor and I had people come in and take care of me um my illness looks like Darlene came on very suddenly so one day I went to soccer practice and the next day I was unable to be either address myself or out of bed and just a really really sudden vikon sight when I was 12 years old so that was about 10 years ago so I was during the summer and I was unable to make it to the first few weeks of school but worked my way into going in a couple hours at a time so it’s only able to be upright for maybe one to two hours at first but obviously had been improved a bit since then so yeah like at my worst health I probably gave up a lot of Independence in terms of being an adolescent which was difficult but I also had the benefit of being an adolescent with my parents able to take care of me and give me piggyback rides up the stairs and stuff like that instead so yeah my name is Scott and I also had the sudden onset bad case it was about 10 years ago I was point I still had bad days or I’m able to basically get up in the morning to fix myself something to eat check check on the news stock markets and things my computer’s about three feet from the foot of the bed and the television is right next to that so I replied in the bed o’clock until it’s time to go to sleep at nine o’clock or

so I’m gonna sleep until done that’s what was like your cousin’s worshipping hi my name is John mine mine started really when I was 11 or 12 ish it didn’t and it just kind of got worse over time missed a lot of school surprised a lot of people when I graduated from high school was able to work a little bit part-time for a few years but never more than a few days a week like six hours or something like that at a time then we got pneumonia for about six months and couldn’t do anything for six months I still kind of feel I couldn’t claim ketchup getting back to where it was you know eight years ago when I’m at my lowest things have been at their lowest okay any lights on I can’t talk to anyone I can’t hear anyone I can’t understand my own thoughts almost I don’t know how to really explain that but it’s just like everything is just out of reach and all I can do is just lie down sleep as much as my body won’t let me and it’s not the most refreshing sleep but it’s better than being awake and trying to deal with just the overload of sensory information so that’s I’ve spent many years then after the pneumonia and some thank you and they seem a little bit depressing to talk about people’s lowest point but it’s a really important foundation for us to understand where the miracle comes from right and I’m sure any of you who live with this illness one way or another understand that this is a very common story right so although people are at different levels of function and symptoms now they know exactly what that bottom places where they’re really really sick so the next thing I want to do and we’ll start on this end but I’m gonna make you start first every time okay Jessica after this question we’ll start on the other end maybe we’ll go back so this time I want them to set to tell you briefly about their current level of function sort of just what you’re able to do and not do now but I really want you to introduce what your miracle is what I asked you to come here to talk about and tell us about it well I’ll pick up where I left off on the last question that that rock-bottom lowest point and that really was at that and to be honest that that the agonizing battle you go through which is what am I doing with my life what is the point it’s a it’s a interesting illness because you know it’s not it’s not life-threatening illness but it definitely threatens your life and it threatens your wealth win so we’re at this rock bottom and what am I going to do and we wanted to have a family but that was the most terrifying thing I could think of and I’m a really sensible logical person and having a chance of like yeah absolutely most irresponsible crazy scary painful that idea I think of and my husband was he was kind of okay in their way waiting or not or he just felt like we can work it out

so I’d like to get crunch dr. Bateman at this point because she gave us this bit of advice that was helped us with that turning point in and in your office one day and she said you know what you can’t put your life on hold for this illness you might get better than you might not you might you might get worse you might not we just you never know what’s down the road and you need to figure out what it is that brings you purpose and joy and figure out a way to do it so I did that crazy scary bad idea irresponsible thing and and our first little child Benjamin is his name and he he really is our low chronic fatigue miracle he we named him Benjamin golden because he well I’ll start out with sadness Jonathan golden and because his mother wasn’t here when he was brand-new and said this little boy has a golden heart and so I married a true man with a golden heart and he is part of my chronic fatigue miracle as well for sure and and so Benjamin we looked at him and said he’s got a golden heart too and I can tell you after he’s almost four that little boy has a golden heart and he is definitely my miracle and he gave me the purpose to keep going he gave me joy he helped dr. Bateman describes it loss ratio with this illness that there’s there’s an amount of loss that goes up on anything you can do to minimize that loss is worthwhile and worth the sacrifice and so I could definitely say it’s true so to sum it up we took us four years but we decided it might be a good idea to have another one because benya was so wonderful so maybe begin a great one next time I hope so and my current situation is this I am a mom but I’m not able to take care of him full-time and so we have a full tonight main sitter get them up in the morning load them in the car take it to our fantastic babysitter and on a good day I can go wake him up and bring him home maybe three in the afternoon or the afternoon is about when I can do it and I can only do that maybe one to two days a week most of the time he’ll stay with the babysitter till daddy gets off work and sometimes I have dinner waiting and sometimes we don’t the time I don’t it’s great because they’re picky eater tonight rather have a peanut butter sandwich anyway my um my current situation is I’m unable to work at all I am on Social Security I am unable to go to college and even getting a degree online presents some difficulty because I have such a hard time memorizing and studying and concentrating and tests and quizzes are completely out of the question so so I’m unable to do those things I currently die I currently have seven diagnosis the three of them are just general descriptions because they don’t know what’s going on I have CFS fibromyalgia pots and a rare mystery condition that it presents itself as progressive most muscle weakness that has continued to decline I it’s slow-going thank goodness but it is continuing and we don’t know where it will and I have extremely low levels of two

neurotransmitters in my body and that’s a test that it’s very rare there’s only one place to test for it in the nation they don’t know exactly what it means they know something’s wrong and they have proof that something is wrong but they don’t know what it means or why I also have dysautonomia which means that every automatic system in my body that’s automatically regulated is having difficulties of some kind that that’s actually a lot of systems if you think about it so I’m also due to the muscle weakness which is due to on the street problem I cannot walk at all or pull my own weight my lights if you stand me up I will drop right in place I am totally flexible I can move I got paralyzed I can feel if I have extra sensitive nerves but I can’t so my my mom helps with my care and my dad and my brother call me around the house piggyback sometimes or just carry me in their arms I’m very blessed type of family that’s willing to look after me and believes me despite of everything but so that is that is how I stand with teeth my miracle I could it is having come from my Savior Jesus Christ because he’s the one who gives me the will to go on he’s the one who gives me my self-worth and I know that I’ve ever loved and held in his arm um he helped me to figure everything out I thought I might be a musician originally I wanted to go there off to a college in South Carolina and become part of a music group there and play my oil and everything but playing a violin it’s just too strenuous for me and there’s nothing I could do about it so I kind of blocked those dreams away in my heart and I was telling God well if you don’t want me to have that dream then lord I need you to change my desires of my dreams to fit yours and he did through a series of circumstances I needed something to do and I didn’t really have much to do in bed so I’ve always enjoyed writing so I just decided to try writing and I chose this biblical fiction and it’s known as the basis for my story I chose the book of Esther from the Bible and I really enjoy doing the research for it I mean how much archaeology do you get to delve into and they’re making new discoveries every day that about ancient Persia and that the kings of old and everything so I really enjoyed researching I enjoyed riding it I loved making characters I loved writing characters so I really enjoyed it and I titled my book star battle on

because the name ester minion star she was the queen of battle it is historically accurate fiction I did a ton of research for it I wanted my book to be as accurate as you could possibly make it historically and biblically let’s see it took a period of five years to write my book I started when I was 16 years old and I’m now 21 and now it is it was published this spring in April so it took a long time it it’s not one of those things that you can do overnight you have to work at it and you have to be patient with yourself not get frustrated that you don’t have more days that are better to write on and all of that so if you have it here I think it turned out really beautiful my I guess that’s skipping ahead to the next question so I won’t do that I think that’s about it for that question it’s funny how miracles take a lot of work my miracle I don’t know if it’s gonna be up there but sort of my functioning level right now is that I can I choose faith normal pretty good benefit so if you the next picture the camping after well we went backpacking and to me that was a miracle I love the outdoors I did about any outdoors thing that you would want to be able to do and obviously couldn’t do any of that for a lot of years so there’s a picture of me in the blanket and that is when I actually could go but I was lucky my husband is a gadget guy so he was always you know coming up with things so that I could go and umbrellas and you know what even so that was done good that I could you know be with the family and with the kids and there’s a picture of my three children and ITIF you look the one sort of thing that’s all covered up he has my backpack he’s carrying on in front of him but that we did the last little bit and that was one of the contingency plans we had strapping young men so with this but you could go in the un tiss and hike a mile or two and it’s like you’re in the Luminess so we went on this camping you know backpacking and it was just amazingly wonderful to me and it’s miserable up there and there’s mosquitoes and there aren’t toilets and I just don’t know how I just enjoyed every last second of it but I did and we’ve actually been three times and so that was fun and my mode of operation now is I’m ozn I can mosey along if I move the I can get along sue me I can’t get around the block but I kid to get around the block now if I go see I can go around the block and at this point I could probably go around it twice and that is really a miracle we move it all the way up the mountain does it all the way back and it’s actually kind of fun so that my miracle and I function quite normally as long as I keep a certain set of parameters and as long as I can sort of you know get going too fast I do really very well when current limitations are decided tolerance so that keeps me stand or walk I still have problems cognitive issues I’m still pretty sensitive to noise I can’t work and I do not to activities like activities a week so I’m really really lucky to have a

husband who has come around and is really supportive and does pretty much everything around the house he doesn’t laundry he does the shopping he does the vacuuming so that’s really great my CFS miracle is that I had a family function that was really important that I really wanted to go to it was in California and I didn’t my wildest dreams ever think that I would be able to ever manage something like that but it’s America because I was able to so I’ll tell you more about that on the next round right my current limitations are so so much improved over how they were yeah I’m able to live quite a normal life and sometimes I forget how sick I was I until recently I held down a part-time job job for five years I’m able to play with my grandchildren and take care of my mother and take care of myself and it’s just a drastic drastic change and a big improvement I I’m on disability for depression but I’m dealing with that and chronic fatigue and the fibrinogen and I’ve been able to advance my miracle I’ve been able to survive financially and take care of all three of those if I could just add something and Sharon gave me permission to do this but when I met Sharon she had four small children and was sick with chronic fatigue syndrome that no one had ever diagnosed along with her depression and she didn’t have enough money to have a car so if you can imagine trying to raise four children when you’re sick and can’t work and don’t even have a vehicle to go where you want to go and on top of that was very severe depression so when I thought of this pal I wanted to include Sharon because I think her life is a miracle her kids are often grown and she’s living independently and she’s learned about both of those illnesses and has made a wonderful contribution to her family and to the places she’s been able to the work part time so to me she is a miracle and a very big inspiration to me along with all the others may not be quite as animal of a miracle but it is is to the two of us because we know the story yes my miracle is a miracle in progress dr. Bateman asked me to come and talk about completing higher education goals and I’m not quite there yet I’m on the five-year plan so far in getting my bachelor’s degree but I last semester I had a full-time course load which was 12 credits so that was quite an accomplishment which was first time Elementary School that I’ve been to school for the full time and I guess talk about more specifics next question I wanted to tell you more about the pictures – you want to mention the torch I know and there’s nowhere I talk about you should save for you tell about the torch and tell about the other ones that are graduating from high school is that the right which was a really big deal I was able to do it with my class which I worked very hard to be able to do and then on the left this new years i did a alta doesn’t new year’s torch right I was a skier and soccer player and very

active before I got sick and gave up skiing for the most part over the years I’ve gotten up and done one run on the bunny hill and that has been great but I can still go skiing sort of but um so yeah this new year’s was amazing it went with my dad and you just go really really slow down the mountain holding a torch so that was an amazing experience and I felt very glad to be able to participate in it even though it’s just one one run and not certainly not the scheme that I used to do but it was really great and I put the other picture in because I took it in one name this is kind of part identification thing I just thought that that – holding a torch was perfect for the miracle theme it’s true carry the torch and the fireworks right up there right mom but the other picture is Lauren when she was 16 and I had her read at one of our events an editorial she sent into the paper about chronic fatigue sin and they published her editorial when she was 16 to try to raise awareness about chronic fatigue syndrome also responded to some negative publicity about the fatigue syndrome and the pain % so doing trying but I was working about 60 hours a week in my profession and also serving in one church and remodeling our house and from the moment I woke up in the morning until I went to bed at night I had to be doing something and was very busy and when it became you know all the sudden all those things went away I couldn’t work and I had to give up carpentry and plumbing and electrical work which wasn’t a terrible thing to give up but I also had to give up church service I found that sitting in a meeting for now we’re in 20 minutes was tough sitting in a meeting for three hours was impossible so I had to find some other things to do or I would have gotten crazy my kids already say I’m crazy so that’s no no change for me my wife is a professional genealogist and she asked me to set up a website for her and I didn’t know anything about it I had no idea what I needed to do but I went to compusa and I bought the most current software available at the time it was called front page by Microsoft and basically Microsoft just took a product they already had its word and they just changed it a little bit and tweak this a little bit right in each or the Internet and so I designed a webpage for and put it out there on the Internet she got some business further and worked pretty well in addition to that I found some other things that I’ve had to do to keep me from going crazy I also do some indexing where every day I take a face like the 1940 census and type of the names that I see it on the 40 1940 census in its computer and that’s going into a database that would be available for anyone that wants to see it a friend of mine decided they’re asking if I wanted to go shooting one when weekend I told me about my illness and he said well we’ll just go for an hour so we just went for an hour like I’ve been around weapons all my life but he decided to show me how to shoot a handgun and so I felt that was really enjoyable mr. Grotti shoot a handgun it seemed to work officers Jim stress too just trying to get there the center of the bullseye and so I’ve learned about that first got my hand got a little bit about it now I did try to go fly-fishing I thought that sound like it would be a great thing to do but by the time I got up to the where is I planned on fly-fishing I was too exhausted to me turned around at home so that didn’t work out too well I have about three or four hours a day that I can really do things and with the computer so close to my bed if I have an idea I can get up and go to the computer and work on something 32 minutes I purchased some books like web

design for dummies and I found them I would read the page and by the time I got to the bottom of the page I’d forgotten what I had read at the top of the page and I did that two or three times and I decided I was just too dumb read that book so that didn’t work out too well but I did find an online source lynda.com ly NDA and they have live presentations on software and I found that I if I watched someone do something then I could remember what it was and now and working on the website there are so many new devices out there smartphones tablets and everything but I’m working on a new website that will work with those devices and work across all those different platforms this doesn’t do justice to the website of course this is my phone taking a picture of the website which is why you can see that the time in 1818 I’m not as smart as Scott I couldn’t figure out it but the website on PowerPoint but sounds pretty ingenious in some of the indexing he was talking about it can be like trying to read Sanskrit it is awful I want anyone who can manage to to read that horrible chicken scratch so as I mentioned before I had pneumonia for six months didn’t do anything for six months because I couldn’t after several years of just telling myself you know I’ll just wait until this passes then I’ll get going with my life finally I became a patient of doctor Bateman’s after a severe stroke of luck gap in the waiting list apparently but thanks to her it it kind of dawned on me that this it’s not something I can just wait for it to pass because there’s no guarantee so I decided to try to go back to school I only did one class a semester one at a time much to my academic advisors hatred which I don’t care about but um so I decided to try to do come up with something that I could do as my energy loud and on my own time so I had always wanted to be like the character designer an illustrator or something so I enrolled at Utah Valley University in the illustration program and after just two or three semesters I was actually pretty sold up not being an illustrator it’s very demanding there are a lot of very tight deadlines and it’s a very perfectionistic and a lot of people can do that but it it didn’t work for me so I moved from illustration that’s where the two at the bottom and the Mantis than the right are from my illustration class my illustration teachers said my style was too cartoony and wouldn’t work well in illustration and that I didn’t explain enough in my pictures there for the assignments for the class we were given the one up top was too late he realized he realized he should have dumped or something like that the damage had been done or something like that so I did a I just with a plate you know but mantises eat their husbands heads so he’s across the table headless and she’s got man two holes on her plate looking very satisfied anyway he thought it was two more of it wouldn’t work the

well in illustration so you know yeah anyway it’s my move to animation and I was told my style was to details form animation too cartoony for illustration and to details for animation okay so my genius animation teacher he was a good man good man he said well you seem to really like to draw characters and clothes and accessories and things like that so why don’t you try like costume design so that’s why that I moved into the costume construction and design classes at UVU and just loved it just absolutely loved it I got to think with patterns and colors and just whatever I wanted to do of course then the problem came with I can design whatever I want then I have to actually make it that’s fine well it’s fun to make things but it’s a lot harder to make payment so the top three pictures the white ones are designs for a production of Androcles and the lion the children’s version that I I’m actually going to be doing all the character designs the costume designs or movie you this fall I still take one class a semester I can get up and go to class most of the time sometimes it’s a matter of pulling myself out of bed getting myself to class and then the moment she says that class is over I then I go home and I sleep for 10 to 12 hours cuz that’s just how my my body adapts of things I was last semester able to do costumes for I didn’t have to make them it was just pulled from there that warehouse of costumes but I had to do several days I would be at the school not on my feet not working the whole time but I’d be at the school for like 10 to 12 hours several days a week for a couple weeks in a row i sat as much as importantly possible I hate as often as I possibly could and I would just vanish from time to time and just take a little nap or just fight somewhere with no sound no people nothing and then as soon as I could go home go home eat something and just crash so that’s kind of where I’m at now I can do things I can push some things I can push myself hard for certain amounts of time you know do things for class and stuff like that but there are a lot of things my teacher wanted me to do then I couldn’t do it was not an option quite stunned still that I managed to pull off what I did last semester and that just this summer I take every summer off without question at front thank you okay now I’m going to tell you that we’ve spent the first hour but it was well worth it to listen to those individuals stories so I’m gonna ask you to do something challenging and people on the panel we’re gonna go around one more time I know you can solid eight these questions and just say what you want so how did you do it you’ve sort of explained if you want to add anything more about how it was you did it and maybe incorporate in your discussion what it costs you not just money rate what it took to do it you got to be really short and brief is there eight of you right what what would it cost what were the benefits I think you’ve also talked you don’t have to say anything you’ve already said but if you want to

add something and then just a piece of advice are you okay just start back down there just give him a little rest all right so two minutes max we’ll start down at Vista because that might back down and you could you can take a look at those questions and decide how you want to summarize whatever you want to leave with people about what this cost what you got out of it and what it took that have what you’d advise to other people I’m really glad you said that because I was going to do that anyway all the things into one that I was running I was laughing when I was reading that because reading about how I accomplished it and the cost and they see my same thing for example how we did it while we we live with my parents we have a full-time babysitter and the costs are and living with my parents having a babysitter I was just kind of thinking how could I describe some of the some of the cost and I I thought of a few just little things including growing a baby for nine months is rather torturous and I consider being pregnant for a year because you have to get ready beforehand and then you still felt totally messed up after for quite a long time so a year is it’s a lot it’s a lot of work to grow a baby it’s a lot of work to take care of the baby after some of the costs include cleaning up throw up in the middle of the night here’s sometimes you can’t see straight listening to those screaming baby even though your head hurts so bad anyway include crying more than your child does when they get their own the shots and holding down a little boy getting stitches even though he could hardly I felt like I was crying more than he was money is a very very big costs for us for us not only like not able to help make money to to provide for our family but it’s costing money to to pay for child care in and all the expenses with our little angels and the physical the physical pain another cost that I I wanted to add is some hidden costs some hidden sacrifices for example one husband he probably would have pursued a more aggressive career path that would allow him to have a higher job probably which most jobs in that category involve long hours traveling a lot of demand that way and we we decided that we can’t afford him to have crazy hours and we can’t afford him to be gone so we we kind of paid for it that way by taking more of the steady little bit less demanding job but less money so if you know of any talents it you don’t have to travel or work a lot of money in a cost but benefit is living with my parents which is fabulous but it also is a little bit difficult no one plans on raising their kids in their parents basement but they’re there for a financial manner and also in support and backup that we need with our kids especially now having to really really thankful for them now Woodard I just wanted to talk about the benefits I’ve gained because that’s that’s to me why we’re here tonight just to talk about not only just how hard it was and how you know what a miracle but but what a joy has brought and the like I said this looks little why I can’t say it could enjoy it is to be a mother even though it’s so hard there can be times where you just want to grab them off at the corner orphanage or something and then the next minute they’ll say something I’ll make you laugh your head off he it’s been great as a marriage my

husband I’ve grown together overcome a lot for two new people now than we were six years ago when we started this journey and I get to see I get to still be a mom and that is what I’ll boil down to even though it’s not the way I want it to be even though it it pains me to have somebody else raising him and taking care of him all day at the end of the day I’m still his mom and he’s still the one that comes home and it’s so excited to see me and I’m glad that I have the opportunity to stay home and rest mostly they kind of have take care of me times so that those few hours in the evening and on the weekends I can really be there for him and I’m going to be able to take care of him a little bit longer but I don’t think I would be my best self so I think that is a huge benefit to to our era : and I’m glad I made the sacrifices there were times we both thought we were going to go out of our minds and win the world than anyone had more than one will find out what – it’s like pretty Civ and we’re just I’m just so thankful and advice I would give it would be to to not give up and I think everybody might say the same thing but find whatever it is that fills up your little heart and do whatever you can to get it you can hit some little bits even if it’s a compromise kind of like I’ve had to compromise to be a mom it’s I had to give up one of the parts I was so excited about getting up and don’t jogging stroller with my baby that that doesn’t happen or go into the zoo and things like that I’m thankful to have eight center that was still taking on all those things and he’s not missing out but I even though I am I’m just so thankful and that’s that’s my miracle thanks for on my best days I spend it out of it as much as possible I go downstairs to do crash cousin list and such and you already heard about my worst dancer like so I had to compromise and when I write it is on right in between days days where I don’t really want to get out of it but I still have a clear mind to think and create I I try not to worry about how long things take instead of setting daily instead of studying like deadlines and you know specific date I need to be done with such-and-such instead of doing that I try to set small daily goals just something that I can concentrate for that day and it really doesn’t matter how long it’s going to take me as long as I know I’m gonna finish it in the end and that’s what happened was my book took five years but I did it and I didn’t give up I try to push myself enough but like to stay within my limits I learned to read my body to pay attention and when I started to get tired maybe I’m starting to get a headache it takes a bit of trial and error to figure out what your limit is so if you don’t always succeed on one day then don’t worry about it try again the next time here and be able to buy 50 round when I’m ready I have my laptop and I play reclined in bed sit up I have a bed that allows me to sit up thankfully so I sit up in bed and I set

my laptop on my computer and I write and so every now and then I will shift around blue more this way or that way take breaks stretch my neck you know all those kinds of things sometimes I just do something different for five to ten minutes then I go back to writing so I don’t feel overloaded you just have to kind of listen to your body and figure out ways to do things if you’re determined enough you can figure out a way to do something it may not be the way you want it to be but you’ll do it right I’m sorry as far as recovery it it take it takes them I just ask or sort of have to roll with the punches just relaxed and not worry about it I make sure that all the time that I use is if I’m not wasting my time if it’s worth the payback then I don’t feel stressed because it was all worth what I did and I am like my publisher has been very accommodating she understands my illness and actually suffered from fibromyalgia herself for quite a few years before she went into remission and hasn’t had to deal with it since but she understands where I’m coming from and so she was real good about not giving me specific deadlines maybe just a generalized deadline and and I think that God for that because it would have never worked if she wasn’t able to to work with me on that as far as payback I am King I have migraines I have muscle tension which tends to lead to the migraines I have an utterly exhausted shaky weak muscles and very Spacey up here it’s really hard for me to concentrate on anything anybody’s saying so you know those that are all right when I can’t pay backs um as far as sacrifices I have to make choices you know if I’m gonna do something later in the week am I really gonna want to right now because Dabney and then Claire in the week or if I’m going to write today then I better not plan on the next two days being able to go downstairs and do beaded jewelry your puzzles or or whatever it is balance is a major part of figuring out what I can do I have to learn what to balance what to do in a dusty trial and error as I say take it one day at a time don’t always look to the future you know it’s good to have goals and to have generalized goals but to say that I’m going to be done by this certain date that that’s not realistic for us but to to set generalized goals and then to concentrate each day on doing your best to do for that day but is going to make up for it down the road it’s going to make your ultimate dream come true so one day at a time nothing am going to interrupt we need so much one time to do this but we don’t have enough time to hear everything I ask them to say actually so they were prepared to answer a lot more so I’m going to end with that really good advice about taking in a data type the rest of the poundin challenge you what I’d like you to say is advice okay let’s roll together what advice you would give

to someone listening to this panel today and let’s hear from the rest of you so I’m going to pass unless you want to say one more thing that is just to be positive you know we always see the negative and things but if you think about it you could find something good about your situation so plays pollyannas glad game you really can’t find stuff Thank You somebody who’s worth off worse off than you are a way that your situation could be worse there are things to be thankful for about your situation and so you know that needs to stay positive I wholly agree with that but there’s a point in my life where that was really hard to do especially if you’re struggling with depression or anything just maybe one quick story I’ll try to be really fast kind of a dozen loaves I was watching a program and it was one of the awesome people my idea is anyway I remember watching him and thinking that’s how I would like to be stick you know you can call people on your bed and you can have you know that the phone rings and it doesn’t just shock you because it’s someone’s even horrible and awful and anyway so I was sitting there hoping that wishing that I hadn’t mentioned it was a nice disease oh you poor dear instead of I hated that so I guess my price I finally had to paint completely sort of he said at the end of the little thing I haven’t a minute it doesn’t have me and I remember thinking this owns me I have whatever see if that’s whatever you want to call it it it is totally the boss and I think I had to get to that point and realize that I can’t find it I can’t you can’t work harder than it and that was hard for me so I just had to realize that and I guess this was it my advice you have to be so very very very vigilant then you don’t cross your boundaries and it took years and years and here not spending more energy and some years of spending more than they can to be not flat on their back again to realize that you really have to live within the parameters that you have matter how tiny there are there are and then another valuable thing was I had to get myself credit because a few things that I could do even if they were little I tried to read book on cognitive behavioral therapy but it’s really hard and but I did get that I do have to be nice to yourself in your head so I decided I wasn’t going to give myself credit for brushing my teeth because it’s really hard your husband perhaps you up the stairs and toothbrush Oh minty that stimulation dopamine stimulation and then all the energy required and then you know kind of inch of gaggin the only thing that was worst was either lying there online with a ket there wake up waking up the morning and my teeth are fuzzy so I decided that I would brush my teeth and not only now I’m going to get myself credit for it and when I woke up in the morning and I knew that it was in half the other spend another day of it at least my teeth felt good man and you give yourself a little bit of credit for even the little things you do and just be vigilant at not overdoing and week-by-week ups and downs then you can kind of get to the point where as long as you don’t believe your self warnings or do what other coping techniques you have to do that some of the benefits that I gained from having a successful trip is I really learned the importance of planning and so with this trip I really need a lot of research and I took out his lead variables as I possibly could so I knew what to expect and so not trying to implement that more in my day to day life so that I get off the roller coaster and quit crashing the brain and then train over again so planning and pacing is something I learned that that was really important I was very careful to pace I didn’t do a lot I really didn’t do a lot on that vacation I I just I had to change my expectations and that’s another thing that I learned and I go in and out and flex with that but I had to condemn the point where I said you know if all I can do is sit in this hotel room as long as I’ve got it’s

where I want to be it was just a little hotel room not a big air over air-conditioned one that would have been miserable and I just changed my expectations so that if that’s all I could do was sit in a hotel or sit down on the sidewalk and watch people walk by that was going to be enough for me and once I got over that hurdle of expectations then things were much better so I’m trying to implement that change in my expectations of myself and what I can do what I can’t do and it requires constant evaluation on that because I tend to every high expectations and so to go from a hundred miles an hour as you all know jazzy Row is just it’s hard it’s hard to make those mine change that you need to make the other thing I learned from this trip was having something to look forward to really helps me out a lot and it doesn’t have to be something big like a vacation I mean I don’t know I would like to do this again I don’t know if I’ll ever have the chance to or not but just having something to look forward to so even if I don’t have you know some time as you all know it’s hard to nail down okay well we’ll do lunch this day this time this restaurant because I you know it’s a day-to-day hour-to-hour kind of the theme so but I found that you can if I have something like if I caught my daughter and say so do you think one of these days we could go to lunch together at a quiet restaurant and she said sure okay let’s see if we can accomplish that by the end of June it at least gives me something to look forward to because when I don’t have anything to look forward to I find myself getting depressed and and feeling hopeless and really discouraged so my advice would be listening to this panel is just so inspiring to me and they never say never you know I listen to and I think I couldn’t do that but change that mindset and everything ever who knows maybe I will and paste and I always try to have a goal have something in your life that you’re looking forward to I would just say do it with what that’s pens it can’t get better and and take one day at a time and and have hope that I the thing that encouraged me is money my family and my grandchildren that I can participate in their life somewhere and and that that enriches my life hey um I think that much like life people who don’t have chronic illness it’s just a trial and error process and that’s what I’ve learned with any accomplishment that I have done in terms of how to pace myself and what I can do what I’m willing to sacrifice to make that happen but I think a good deal of my successes comes from just the luck of being surrounded by really wonderful kind smart creative people who have guided me and produced accommodations without which I would not have been able to do as much college as I have graduate from high school with one of these people is of course dr. Bateman but so I think that becoming an advocate if you don’t have one is something that is invaluable for those with chronic illness and with chronic fatigue syndrome especially I guess it’s hard to give this advice because I feel like it’s more characteristic the character trait than something that you can develop but just patience and perseverance and being able to accept

when you can’t do something and to realize that you can’t and much like other people have said it just celebrating every little triumph no matter how small it is or how large it is is as we’ve seen it can’t be large and it’s all depending on the person and that send with patience I truly believe that things will get better for everybody so even if it’s a little triumph one should celebrate that with all of it you can muster so but after agree with what is said in the paper I think well the hardest things that I had to learn was to be patient with myself it’s easy I think sometimes the patient with others I haven’t learned to be patient with myself and I think too with the syllabus you could just roll over and play dead and but that’s really not the answer if I stop living I found that I need to do things I need to buy mo my old model still I can only do part of it in a day but I still do that too so I don’t just atrophy and die and I think also doing things like the website also gives me intellectual stimulation and I think that’s really important too I agree with what everyone this has said patience small goals one thing which I guess kind of fits with all of that is it’s easy to to see I just turned 30 recently my mother can’t work one class a semester and it’s really easy to look at this is how life is supposed to be this is the mold that it’s supposed to be followed and I think one thing that’s very important with chronic fatigue is to realize that you have to find what works for us everyone is has said if you try to just do like many people will say just pull yourself up force yourself to do whatever it takes to you know be normal it’s not going to work they’re going to be miserable that’s not to say to give up you have to find your pace you know what I’m just gonna go ever I feel like doing go wherever I want this is what I’m going to do it one time and everything yeah dr. Bateman has really helped me to understand this more still struggle with it just to realize that it doesn’t work gratitude for that you have which fit given for the people in your lives I mean to give it a more positive spin I feel like you can still do those things

you as long as you have as long as you’re aware and willing to accept the pain back and you just need to be aware of what you’re getting into which is not always possible but I don’t I just want attention because I mean there are some things that if you really love that are art worth paying for months or years for I feel like so diminished I wasn’t saying I wasn’t trying to just learning to work within taking into account what the payback will be what the penalty will be and I’m just learning what’s what’s worth it the example that in you is you know you thought you could only manage that one class a week and actually that was all you could manage until you kind of found your passion and you found a way to maybe take a chance and probably have a big payback during that week when he worked for two weeks really long hours and sometimes when it’s your passion you find strength to do more than you think you can do but you also might have a price to pay and sometimes it’s worth it maybe that’s the way to look at it um amazing you can see why these people are my heroes and these are very special people that I want you to know these are not the only eight people I could have had come here tonight there are many many people who very quietly have their own miracles and I just want to quote something from Mark Eaton if you remember about eating is it very very very tall basketball player that used to play for the Jazz and we had him come talk at one of our conference as many years ago about how to deal with chronic pain I didn’t know it was gonna say it was a little nervous actually not knowing what he was gonna say to the audience and I remember when he told his whole story went through everything he’d done to try to overcome chronic pain and at the end you want to know what he said was the solution I’ll never forget it he said find your place and the solution to chronic pain was not that doctors was not the alternative care was not medications was not MRIs it was none of those things when he finished his journey he realized he had to do what made him happy and he had to find what breathless and happiness in his life but when he did that his life and his battle with pain became entirely different so remember what you’ve heard here and hopefully you can take it a day at a time and you can remember to view the glass half full as much as you can and find your bliss thank you very much and and appreciate you coming all right thank you very much take your time it was worth the time and it’s very great