Fortitude in the Face of Chronic Illness


hi I’m Mary Sue Rominger I’m on the board of directors and a volunteer for the Bateman horn sitter welcome thanks so much for joining us tonight we will post a video of tonight’s presentation on our Bateman horn Center YouTube channel within a day or so we do plan a Q&A at the end of the program so those of you on Facebook life can use the comment section to ask your question our speaker tonight is Linda Milne Linda is a longtime patient with the Bateman horn Center she’s volunteered from time to time for many years and has also served on our board of directors Linda also contributed to a blog for Emmy CFS and fibromyalgia patients called Linda’s corner that was on our previous website not only is Linda an advocate for these illnesses she has received multiple volunteer of the Year awards most recently being in 2014 and 2016 from the chamber West Chamber of Commerce here in the Salt Lake City area and this year she is being honored by UT Utah AARP for a community service helping seniors to prepare and have a plan in the event of disaster tonight Linda will share with us how a person with significant health limitations can find a sense of accomplishment please welcome Linda Milne thank you Mary Sue good evening to those of you that are here in the Bateman horn Education Center and to those of you out on Facebook land a warm hello and to those of you who will be seeing this perhaps at a later time on our website greetings to you as well before I start I need to let you know that I have some voice problems that occasionally three bump if that happens and I cough and spurt don’t worry don’t be embarrassed for me I’ll get through it and we’ll we’ll continue I just want you to have a heads up on that sometimes my asthma kicks in and it’s always a surprise I am 22 years into mecfs and along the way I managed to acquire fibro and bushel basket of other illnesses as well mecfs yeah forced my medical retirement and I had to leave the workaday world early and I really came to miss having a professional life for the reasons more than a paycheck caring for myself and trying to manage this new abbreviated life put my attention squarely on myself and I was a bit uncomfortable with that I would say then along came the needs of my elderly parents and there is nothing quite like watching over someone else that’s dependent upon you to reshape your thinking it gave me the opportunity to acquire more kindness and more generosity which are attributes that had kind of fallen by the wayside for me and one of the lovely things that are presented for me is that it gave me a sense of accomplishment if if my parents were winning then I was winning it was a wonderful feeling after my father died I ventured out into the community and I went and attended a community council meeting and just to see what was going on in the world outside the tiny world that I had been living in for some time that meeting led to a lot of other meetings and it amounted to an investment of 90 minutes a month I eventually agreed to move out of the audience and move up and take a seat as a council member I missed a few meetings as you might imagine but it turned out not to be a source of stress I just simply called and asked to be excused and the one thing that I learned is that almost every board meeting whether they’re healthy or not the members occasionally don’t attend so I really didn’t stick out like I thought that I would they asked me if I would accept a hat that no one else would wear and it was to be the emergency prepared for my community and truly nobody else would wear the hat they thought that I was well qualified because I had been in three earthquakes and I had been in three civil riots in my adult life and I had even spent some time preparing my corporation in LA for the big one at the point that I took on that hat I sat down with my colleagues and I told them about my illness and I said I’ll agree to wear the hat but here’s the thing I’m not sure how much benefit I can be to you if any because of my illness but we decided to give it a go and it turned out to be a perfect fit they were patient and understanding and and I liked wearing that hat so off we went and now canyon rim had someone in charge of emergency preparedness even though I would say that my contributions were sparing I was appreciated and I cannot tell you what a great feeling that was to have that coming my way after after a long time without it I’m a dozen years down the road now and surprisingly I’m still volunteering in fact before I knew it I had become somewhat of an emergency prepares I’ve learned that one person can accomplish even a little in my case it was from my office daybed a portable computer occasional meetings and occasional presentations and it still is operating that way my overriding over writing motivation in taking that hat was and still remains that I want to help people who are challenged by the prospect of preparing and responding to a major disaster that includes all of us with this illness and and older people so my my burning purpose in life is to help people prepare appropriately for a major disaster and this is the truth not an overstatement preparation can be the difference in living and not living in a disaster but emergency preparedness is not really the focus or the subject of my talk tonight but if you wouldn’t mind I’m going to squeeze in a little information on the topic just because I can’t help myself first of all I’d like to share a rather harsh reality with you no professional responders are coming from you for you or for me in the event of disaster we’re not on their radar simply because we have major physical limitations we are 100% responsible for being able to manage three different emergency response scenarios and I just want to touch on them so that you have this information in your pocket should you ever need it those three things are sheltering in place on foot evacuation and evacuation by auto so sheltering in place kind of it means exactly what it says you’re going to hunker down in your own home on your own property now you may determine to do that as a as a choice of your own family just because it feels like the safe thing to do or you may be mandated by authorities to do that very thing that’s happening right now in the Big Island of Hawaii hurricane lain came calling and dropped 30 inches of rain in a very short period of time the Red Cross did what they routinely do that wonderful organization they open shelters for people that were displaced because of the hurricane but here’s the thing there weren’t enough Red Cross resources so the authorities asked the residents to shelter in place wait for this for 14 days now so I’m going to ask you that question you can just kind of answer to yourself if we had a major emergency tonight and you had to shelter in place in your home on your own property for 14 days and not able to leave your property for any provisions or supplies how would how would you do would you be ok if you have any doubts may I take this opportunity to encourage you to take your time do it gradually but to go out and get enough provisions and emergency supplies that you could say to yourself for anybody if we were required to hunker down and shelter in place our family could do it and we would be okay itself this means a lot of clean drinking water food first aid bathroom tissue medications if you’ve got infants at home it means diapers and maybe formula if you have some furry members of your family you need pet food enough for them for that same period of time now wouldn’t daddy Dan also carried with it total disruption to the infrastructure and don’t think this is uncommon it is not and so think about these 14 days again with no power no safe drinking water source no working toilets no garbage collection no gasoline for sale etc and these are realistic situations you can probably think of maybe the last five major disasters we have in this country in some places all of these things happen so I’m going to say a word about sanitation because almost no one does out in public and I’m willing to talk about poop and I’m one of the few so let me just give you a shorthand version if if you are hunkering down at home and the sewers aren’t working you this is what you do have ons on hand thick plastic bags that you can line your toilet with put the seat on it to hold it in place use that bag for solid waste only urine is not toxic and it’s don’t don’t combine the two after youth use the bag throw in some kitty litter or some sawdust maybe some deodorizing chemicals disinfectant and that’s how you do it and when those bags are need to be replaced you take that bag and what are you going to do with it this is the really important piece this is where public health falls apart and major disaster because our human waste is so toxic that if we don’t handle it properly it’s an open door for a very quick and fast sweeping disease there’s plenty of information on the internet for you I’m just going to give you down and dirty on this this is my solutions for handling use solid waste the bags go in this galvanized it’s a lot better than nothing it’s not near as good as it has that drunk or cold it’s 36 inches deep on your on your property but this is something that you can buy at a hardware store and you can use it to that purpose now I gave you the first scenario sheltering in place the second scenario is on foot evacuation and having to do it quickly you’ve got to take enough provisions with you to take care of you and your family for 96 hours that’s four days and four nights did you notice I didn’t say 72 hours I said 96 because that is the new standard from the professionals telling us and the in the event of a major disaster it will take at least four days and four nights for help to reach us so if you’re evacuating to some kind of a gathering place in your community you’ve got to arrive with provisions in hand because there will be nothing there for you now this particular poster I used to I used to bring all of these carts to show them but it got a bit difficult but this is a picture of the four cards that I have pre packed in my garage to serve my family which is made up of myself an aging woman with health problems and my brother a senior with health problems so there’s two cards one for each of us and we can because we have two hands off we go we can pull those supplies with us I’m very involved in the development of the gathering place in my community so I know for sure that it’s only what we bring with us that is going to be there to help us now you’ll see on this you can see lots of water in every one of those cards lots of water I’ve got sanitation including a privacy tent food means of cooking hygiene first-aid sleeping I do I have a seasonal bag that I put on that in the winter it’s got things that will keep me more in the summer I I pack something else that’s what that’s what my that’s what some of the components are for my on foot evacuation just to give you an idea of what it looks like one of the reasons that you need carts and not a backpack is because of water weight and awkward sanitation supplies how much do you think a gallon of water weighs just the water weight 8 pounds 8 and 1/3 pounds you’re on the money now the experts tell us you must have at least one gallon of water per person per day to get through those 4 days and 4 nights that’s that’s over 33 pounds a lot of the mascara experts tell us we want you to have 3 gallons per person per day it’s you almost can’t wrap your head around the potential problem of getting that much water to a gathering place but it is the single most important component water alone will keep you alive you don’t need food you don’t need a lot of things but you must have water and you must have a means to for your family to have safe toileting no matter where you are one of the silver linings that I’ve seen many times in disasters are the beautiful stories of strangers who step up to help people in need that are either injured or in desperate need of comfort because they’ve lost everything it’s so hard to confront and yet in such a beautiful thing to see the way that humanity can raise rise to the occasion and help people they don’t even know and it is a brilliant opportunity for neighbors to help neighbors I have built warm relationships with the people on my street because I like so many because I want to do that but I’ve especially developed relationships with the younger stronger families and I have asked them in the event of an emergency that captures our community or something regional will you be willing to check on my brother and I we have our own provisions you won’t have to provide for us but we may mean help we’re old and all three families that I’ve asked have been very happy to sign on to the Linda mill rescue plan and I strongly when I talk to people who are have illnesses or who are aging I stress to them the importance of building warm relationships with the people that live near them not across town not a half mile away not their kids in another County but the neighbors that are right there with them build those warm relationships and confide in them that you have an illness that may prevent you from being able to evacuate safely and ask if they would be willing to help and don’t wait until the disaster strikes to make these requests these are pre disaster arrangements that you must make and you’ll be surprised how friendly and willing people are to accept the fact that you have limitations and that you may not be able to take care of yourself or evacuate if it were retype required the third scenario I want to talk to you about involved your automobile and that’s evacuating by auto if you’ve been following the wildfires here in the West you know that thousands of families have been forced to evacuate their homes in their automobile I keep an emergency kit in my cargo hold of my very favorite new car and I encourage people to do that in every family vehicle have enough provisions in your cargo area or your trunk that you could take care of yourself if you were caught in a disaster away from home now in many situations people want to evacuate so that would be one of the reasons that you would in other situations you’ll get a knock on the door or there will be something that goes out over emergency communications to tell you grab and get out of your home in your neighborhood you’ve got to evacuate by car quickly so have provisions there and know what you want to take with you other than provisions if you have a precious five minutes to gather and run there have been many times in the last 22 years that I would not have had the strength to prepare and not the strength or even the desire to respond to an emergency or disaster I was living one sick day at a time and it could happen again but the one thing that I did have the sense to do was to communicate to my network neighbors and let them know I’ve always been willing to let my neighbors know the condition that I’m in and ask if they would be willing to help in the event that I needed it and I’ve never been turned down I landed on the topic of emergency preparedness tonight for a minute because it is my passion and it is a purpose that I have in life and it has actually been quite magical in my life because it has brought passion and purpose to me it by itself having purpose has moved me from a point of being total effect of my illness to a point where I feel that I am cause over my illness and my condition in life do you have a passion do you have a purpose if you do I invite you to think about the possibility of taking an assessment of your health and if you’re able to maybe step out and add some kind of volunteer volunteering to your life it doesn’t matter how much time but if there’s a group that you are passionately connected to or care about you might think about it you might end up being surprised how much more meaning it gives to your life and how wonderful that feeling of accomplishment is but I want you to keep in mind something I have no spouse I have no children I have no grandchildren now most of you that are seeing this that are here or they’re out in face book land or that will be seeing this on our YouTube channel most of you probably do have a family and I want you to know that that may be purpose enough for you and that that may be where you get your accomplishment and don’t feel like you have to step outside of the care of your family to feel a sense of accomplishment but on the possibility that you are able to do it I just put it out there as a possibility for you that it is rewarding and that it can make a change in your life especially if you’re someone who spends a lot of time being bed bound and housebound every now and then the winds that I have had by volunteering and doing some other things in my life have given me confidence that I had lost when I became ill and that confidence felt like a right pair of shoes it was a wonderful feeling to have that back in my life even in just some small way so I took that confidence that I had gained from my community work and I added some more to it and I decided that I was going to travel I’ve been waiting and waiting and waiting to get well so that I could travel internationally I’ve been waiting a long time last year about this time I had a special birthday and I am a woman of a certain age and I I said to myself okay Linda you’re not waiting any longer you’re going and you’re going to take an international trip and you’re going to be done for a whole month and you’re traveling alone and let’s see how this is going to shake out now I decided I was going to travel to the UK because I feel like I’ve been connected to that part of the world for lifetimes it just felt like the place I needed to be and I wanted to visit all five of the countries in that region those that are in the UK and Ireland as well I used my travel miles that I’ve been saving for a long time and I sold a piece of property a little piece in Arizona to finance my trip so that I didn’t have to up end my day-to-day finances I selected a travel agency and I said make my accommodations in all five of those countries and I learned something they did that since then since I have been returned home and I’m still researching this idea of international travel so that I can do it again and so that I can help others do it and I realized that there are people out there who are travel advisor ‘z they charge by the hour and they’re very willing to sit with you hold your hand plan plan it down to the nines whatever it takes for you to be comfortable and that’s the kind of professional I am going to use next time I travel I’m happy to spend any amount that they require so that I am working with somebody that I know understands me my limitations and is very willing to do everything that I want to need and I found just such a person and she lives only a mile for me my first stop was England so I flew from here to D throw and I flew first class because of my travel miles and it was wonderful I had never flown first class for a long time anyway and now you have a sleeping compartment and you have a space to call your own and Delta I must tell you was remarkably helpful to me they had wonderful service and I I just put that out to you that I don’t know how they are on all flights but on that one they were remarkably helpful I I took a train from Heathrow and my friend Ali met me she drove to where my train let me off and we went to her home and that is Ali Allen and she was a nurse here for a very long time at Bateman Center and she’s my dear pal and she knows the limitations of my health almost as well as I do and she’s been part of she was part of the planning my trip from the very beginning and she was my cheerleader and her confidence added to mine gave me this big certainty that I could really pull this off she lives in a village of 4,000 people called Kington she owns a B&B it’s a lovely little place and owns a retail store there for long distance walkers who come walking past her village on some of their national trails so it was wonderful having a four-day visit with her it was just delightful at my insistence and I really had to arm twist but I hired her so that I could have someone in my life who could who was familiar with how to navigate the rail system and how to navigate using small Airlines when I travel I’m very dependent on wheelchairs and my cane so those two things will my biggest worry how will I get from one city to the next on a train by myself with all my luggage including my CPAP machine how will I transfer from train to train how do I be on one of these small Airlines Delta was very accommodating wheelchair and help but what will it be like so we worked it out she found the right phone numbers for me she gave me the right instructions the right things to say the right departments to talk to and it was worth everything and once I had that information and had experienced it boy I realized I would have been in deep trouble without that traveling alone and not being able to make those kind of transfers I just didn’t have the physical strength and stamina to do it that is quite wonderful to arrive at a train look out the window and see someone in a wheelchair saying I here for you and they would take my luggage put me into the chair and off we would go to the next platform where I would catch the next train or if that was a destination point they would take me to a cab station where I would get a cab and go to my next hotel it actually worked out pretty smoothly but only because I had the secret codes if I hadn’t have had that it would have been difficult I moved from Kingdom to Cardiff Wales and from Cardiff I went up north in Wales to London know which is a resort town on the North Sea I went from there to Manchester England and from there I went Dublin Ireland from there I went to Belfast from there I went to Glasgow Scotland and from there I went to Edinburgh Scotland from there I went to Oxford and then I caught my delta flight and came home it was a thirty days trip all together either way let me tell you I had been given great instructions that I was going to be able to use uber all over my destination oh did that turn out to not be true the only city I was in that had uber was Cardiff and the rest of the cities there’s pretty much a big war between the cab unions and any of these private lyft companies they are not welcome and it’s a big deal so when I needed a cab in all the other cities I just used the black cabs that you’re used to seeing I was so happy to find that there’s such a thing in the United Kingdom and apparently all over the world they’re called hop on hop off buses have you ever heard of them aren’t they marvelous oh so here’s how they work they cover a route of popular sightseeing destinations and they just run those destinations all day long and it’s set up so that you can hop off see a destination wait fifteen or twenty minutes or thirty after you’ve done your exploring of that location and then one of their buses will come by and pick you up again it most likely won’t be the same bus you exited on but it’ll be another one in their company and they’ll offer the same thing I always chose buses that had live commentary instead of recorded commentary and it was just fabulous when I would arrive in the city the first thing I would do would be to find to hop on hop off bus that was nearest to me I would get on and I would ride the whole circuit once or twice and then I would take the map and I would decide what my destination points were going to be while I was there for the three days that I would be using pop-on and haha at that particular City I chose a modest number of destinations each state and I was pretty comfortable with my choices hop off see them and then you get back on but I’m very sensitive to my health and the last thing I wanted was a relapse halfway across the world so I took great care and when I ran out of energy and when my stamina was failing I just I changed my itinerary and instead of hopping off I would just stay on the bus I would ride around and listen to the commentating again and I would visit with people I’m the bus and it was wonderful I I felt great about it I never felt disappointment the whole time I was there no matter what changes that I had to make sometimes on on them without any notice never felt disappointment I guess it was because I was so grateful to be there I was so proud of myself that I had undertaken this journey and that there I was traveling internationally as this old broad and I was there by myself and I was making it happen and I was always had a smile on my face just because of the happiness that I had now you know the whole time I was traveling I never ran into not even once another woman traveling alone of any age of any health consideration just me so when I would talk to people and they would see me get on the bus alone and they would say where’s your husband and I don’t have one I’m here by myself they would go really well you’re either very very brave or very very crazy and that was pretty much what they all said and about that same way some people just thought it was wonderful what I was doing and other people were just worried sick for me I ended up and pardon me just a moment I ended up falling in line behind the people that thought I was brave and not the people that thought I was crazy I paid for a four-star trip only because I couldn’t afford a five-star comfort is a very big deal for me because so much of my trip is spent in my hotel room so I want to be happy with where I’m staying in any of the cities hotels were just such a significant part of every day of my travel life I’m a political walk absolutely my favorite sites in any city were City Hall’s and Parliament Buildings and palaces and political venues I did a lot of art and history museums libraries any place where I could get a feel for the people in a historic sense or over them now day to day that was what I wanted for my trip and I loved the marvelous University campuses I went on many campuses and explored them thoroughly as thoroughly as I could I should say I even took part in two demonstrations of women’s groups in Scotland and I really enjoyed that seeing how they because I’ve I’ve had that kind of political background as I when I was a much younger woman so it was kind of fun to see what it looked like in these two different places in Scotland what’s great fun now to be perfectly honest with you and I don’t want this to discourage you this is just because I want to be frank with you I had one health crisis while I was gone it happened in Dublin and I had to seek emergency care urgency emergency care in the middle of the night and done now the real exacerbating problem was cigarette smoke I have a hard time with it with my CFS it’s just one of my trigger substances and it’s really lethal for my asthma so I I got hit really hard with that and so I got medical care now again to be perfectly honest with you so that you wouldn’t have to ask this question I had to cancel some of the destinations of my trip because I had this health problem and I was I’m I lost some opportunities of destinations I wanted to go to the Isle of Man because I have ancestors and I wanted to go very far north in Scotland and I wasn’t able to do those two things however it did not take away one bit from my the way I felt about my trip and the way I felt about myself for for doing this trip I ended up looking at this experience as just part of my trip it was just an interesting thing that doesn’t happen to everybody and it happened to me and are died lucky and I’ll be able to tell people that first-class rail travel through the UK and Ireland is wonderful and that is how I travelled I I wanted a reserved seat and I didn’t want to board and have to worry about getting crushed trying to get to a seat so there were times when all of the other cars were jammed and I was in a first-class car and there might have been me and one other businessman there were a lot of situations that were like that so again I spent my coin on those things that would make my trip doable for me and that would help me manage my health follow his bone it was so great to watch the countryside go by all the green farms and Hedges and the cattle ranches and and the sheep ranches and the beautiful coastline uh I never tired of the view it just I just felt like I had had come home I couldn’t get enough of anything one of the things I really loved about the UK cities and it would be this way all through Europe as you see all of these marvelous buildings that are centuries and centuries old and next to them are all these marvelous modern buildings and the old and the young live so beautifully together architectural and as human beings and I really like that I loved the bilingual feature of Cardiff fact all through Wales go through Cardiff and every sign on every building every street sign every description in the museum everything was bilingual I could read the English that I couldn’t read the Welsh language but I admired this country they’ve made a marvelous effort to put their native language back into their school system now you enter as in your first grade and you go all the way through school and you learn both your learning English and the native tongue so I saw it posted everywhere but I I didn’t hear it so when I went to museums I was always looking for groups of kids that were on field trips or something and then I would just tag along behind them and listen to them talk to each other and all they used was the Welsh language when there were out in public and I don’t know if that was required by their teachers or if that was uh it was the first choice but it was wonderful to hear that and I I learned that in Ireland and in Scotland there is an effort there to bring back their native tongues and and get their population bilingual there are very few there the our I was fascinated by the way that the major cities in the UK have reinvented themself successfully after a lot of wreckage of the things that were their primary industry like they used to be for example Cardiff in a lot of places through the UK where coal was one of their major exports and they had bustling ports it’s not that way anymore textiles was was a big industry and the making of whiskey used to be a huge employer and now it’s so more of a modest employer so now the main industries and this was really fun for me are the tourist industry and television production in every city that I was in in any country they all were spending money on production studios and BBC had upgraded many of their their studios to state-of-the-art because it is such a thriving industry there I want to tell you my favorite destination its Belfast and it probably wouldn’t be anybody else’s favorite but because I’m interested in politics and how people get along and the trouble they get in politically with each other Belfast was an attractive place for me now Belfast is and if I’m telling you things you already know forgive me please but Belfast is the capital of Northern Ireland which is a six-county country it’s on the northern part of the island of Ireland and there’s two separate countries Ireland and Northern Ireland and there’s a lot of friction and differences some of it is political and it’s of long duration and some of it has to do with religion Catholicism and Protestantism particularly the Church of England some of you may remember we read about it a lot in in America about the almost like the guerrilla warfare that was going on between the Irish and the people that were loyal to the Queen and that lasted for 30 years it was very bloody there were a lot of deaths and part of the tourism now you can see the place where all of these things happen that I had heard about and read about for years and a lot of people are martyred with their pictures on the painted on the side of buildings for both those that are loyal to the UK and and those that are loyal to the Irish it was all very fascinating to me you know when you would board a bus or you were around people who are in the tourist industry they would talk about this period of time as the troubles the troubles they described it that way in Dublin and they described it that way in Belfast and I thought wow this sounds like a PR you know euphemism to me to camouflage a guerrilla war of 30 years and I changed my opinion by the time that I had left I came to see see that as in a very respectful light that this was their way no matter which country I was in it was their way of being able to talk about this 30-year war to the tourists which is their biggest industry without talking about it in a very conflicted way so they would talk about the troubles in Dublin from their point of view and their truth and then up here in Belfast they would talk about the troubles the thirty years and but they would be interjecting their truth but in a very civil kind of way and I walked away thinking wow this is really a life lesson to learn and I really appreciated experiencing that I met a woman in Belfast who had just returned from a hiatus in New York that lasted 30 years and she had just that week returned to her home in Belfast she left originally went during the period of violence one last story about Belfast some investors and some of the leaders there decided that it would be a really smart thing to do to create a Athletic franchise that would attract everybody and they can all be teammates they could play against uh you know another opponent rather than each other being the opponent so they decided that the franchise would be ice hockey now here’s the thing nobody in Belfast knows how to ice skate and it was like I can’t imagine how the planners and the investors like didn’t know that maybe the money was coming from outside the area I don’t know they went ahead and they created the ice hockey franchise and they had to hire all of their hockey players from other countries so everybody people are there now enjoying ice hockey but it didn’t accomplish what they had hoped that it would you know I’ve I’ve been asked a few questions by people and so I’m going to tell you the question and give you the answer the ones that I asked the most frequently will I travel again absolutely if I can find the coin to do it will I do it soon yes although I had to skip this year because of other other priorities but yes I will and it’s it’s help dependant so it’s an it’s an experience for me to to want to take care of myself so that I can be travel ready when the opportunity comes my conclusion to you is that travel is a wonderful accomplishment if you’re able to do it do it maybe don’t wait till you’re fully healthy and my last word on volunteering if you’re feeling like life is small and confining consider finding a purpose and a passion and finding the rib to which you can donate an hour or two here and there I’m so glad that you came that went longer than I thought it would but thank you for tuning in and thank you for being here [Applause]

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