Are you a Sloth or do you scurry??!!

hey it's james i'm mercy and we are back for another video this time just talking about telling you a few stories and just telling you some of the things some of the challenges that we've had um to overcome uh getting out of the house yeah just our feelings and things that we've gone through adjusting to being out and about and you know that's that's more difficult for james now than it was a year ago yeah so before we get started i i would like to share a story um about when james and i first started dating kind of giving a little insight into um who james and i are as individual people so um we hadn't been dating very long when i started to notice that um james really took the time to stop and be present with where he was at really in particular with nature we have a lot of moose here in alaska and often caribou love caribou caribou yeah all kinds of different wildlife and um james will take the time er you if we see a moose he will take the time to stop and look at the moose no matter how often we see moose if we see a moose james is going to stop and look out one day we were going up to anchorage is about 150 miles away and we actually had an appointment that we were running a little late for um time was tight and we were in downtown anchorage which is a big city and saw a moose walking along the side of the road and in in anchorage that's not something i was used to seeing yeah so uh james started to slow the vehicle down so that he could stop and observe the wildlife and i was like uh we have a time crunch here so we talked about a little later yeah um james is a little bit slower paced than i am i'm he calls me a scurrier so i have places to go and things to get done and i am constantly thinking about um where i'm going and what i need to do next and james's a slower pace reminds me to stop and be present with where i'm at in the moment and um so one day early in our relationship i i told him um very lovingly like with a heart of of appreciation and um told him that he was a sloth like and james what how did that make you feel about the time i took offense because i growing up that was a negative connotation uh sloth like was being like lazy and not getting things done yeah so we had a conversation about that and um he came to realize that i actually meant it in a loving and kind way and it was a compliment so as you can see by some of the decor around us um james no longer takes offense to being mr sloth yes so just an insight into like where james and i are at this was pre-myositis pre-chronic illness that was before um he had a muscle weakening disease that caused him to slow down even a little bit more so i think today we really want to talk about the challenges we've had just going places together and getting around in those places and being present with each other in those places and what adjustments we've made are things that we had to adapt to and how we felt along the way yeah there have been things we didn't even realize were happening as they were happening until we kind of processed and talked and figured some things out that we will explain um but yeah just getting out of the house walking uh when we first met i was a tow truck driver um you know running around down the ground up helping people towing cars and i really enjoyed that i'm still friends with the owners to this day um so yeah it has just been a challenge in uh some of the struggles and just the processing that we've we've had to go through yeah so um just an example of somewhere we happen to go a lot is walmart we live in kind of a small town there's not a whole lot of different places where you can shop um walmart seems to be like the place that can be one-stop shopping and go get a lot of things um taken care of in that one stop so we go to walmart a lot um we used to go together and you know get the car stroll around the store get the things we need um if i was on my own i'd maybe go at a little faster pace and scurry about but when james and i went together it was a nice experience it's time together just going and chatting and spending time together yeah looking at things and talking about stuff and um and so that was you know something that we would do and as the myelocytes started to progress um you know it became a little harder james would walk a little bit slower and there came a time um when i started to because in my scurry mode i would want to go in the store gather up all the things i needed purchase it get out go home be done um so there were a lot of times earlier in the milositis progression when you know we'd pull up to the parking lot and i'd say okay james just drop me off i'll run in i just have a few things i'll grab them and we'll go um because sometimes it would take if it was just one item or two items she could be back in the car by the time i could even get to the items yeah or even you know to the store yeah yeah so uh so so that lots of times where james sat in the car and how you i think you expressed that that was you didn't really like that no no i felt lonely or loneliness and some sadness that we couldn't just go together yeah and i was starting to feel too like i i appreciated that i could run into the store grab the things i needed and um and leave for the tea by the way you're welcome and um but i too miss that time with him and um and was feeling like you know what i think i want you to come in with me and so we went through a phase of james coming into the store we would go in together um there were some times when i asked him to come in with me and he we would walk into the store and he'd say oh i'm gonna go to the bathroom and then he would be in the bathroom for a long time i'd scurry about get get stuff done and then um you know texting back and forth okay i'm checking out and then just shortly after that he would be coming out of the bathroom and so i you know i've often wondered if that was almost a way for him to um kind of be able to go into the store but not have to try and keep up um when we finally got a handicap sticker was that was that just this winter she helps me so much with the time no that wasn't this one um we had it in i think we got it fairly early in the spring after your diagnosis okay yeah i think that was one of the things that um dr marcotte you know suggested right away so kind of on that note um i had had fears and will share this in the story um kind of as things progressed um once i took uh a step or or you know as it progressed um i wouldn't be able to go back and not use some of the tools some of the tools that were available i was hesitant to use because i thought like once i start using them i'll use them for the rest of my life and i was i had fear of doing that mm-hmm yeah so uh so we so we got to the point where james would come into the store with us often you know oftentimes it seemed like he'd go the bathroom and then i'd be a little frustrated like you know i wanted to do this together we came in together and and and now it's time to go and i again was still feeling kind of lonely um but also during that time there were times we realized that you know if james uh used the cart and we can push the cart out push the card along and and that kind of i can use it like a walker yeah kind of like a walker or something to hold on to um so uh we went along like that for a little while sometimes drop me off at the door and then you go park yeah yeah some you know and then um we started uh so we would go in it was slower but james was there with me so i liked that so there was um times where you know we'd be going along and i would get ahead of him and um it really stands out in our minds at one time so often i would get ahead of him and i would stop to wait for him to catch up to me and um that happened a few times i would stop and then he would stop and so finally one day i was like no come on let's go i'm like i'm waiting for you i stopped so you could catch up right and and so we you know we so we talked her and started processing that and i realized that when she stopped i was able to stop and have a rest because she she had stopped um it was kind of like a hiker a slower hiker and a faster hiker the slower hiker is behind the faster hiker stops but by the time the slower hiker gets to the faster hiker the faster hiker is ready to take off again and the slower hiker never gets to stop yeah so so i would stop and he would stop and i would be thinking why is he stopping and i'm waiting for i'm waiting for him that's why i stopped and so finally that day i said to him come on and and he was like well you get a break and i'll i'm thinking that i don't need a drink so it didn't occur to me that he needed to stop and take a break yeah you know because he'd be and i i hadn't thought about this enough to voice that to to say something i didn't even really realize that's i was stopping too until she said something that day and then we talked about it and thought about it and yeah yeah um it's communication communication is really helpful that's exactly what i was gonna say yeah it like we've learned so much about communication um one of the things we've been blessed by is that we have both gone to therapy um weekly almost since this began and that's been huge and we just realized there's so many things that we need to communicate huge shout out they still do shout outs shout out to tim tim yeah and sonia yeah so um so then we we ended up we got james a cane so in the summertime we like to go lots of places we like to um to have go on adventures and do fun things and so last summer uh i i just woke up one day and was like james let's go to portage today so portage is between here and anchorage i'm not sure exactly how far away but it's you go and go on a cruise and see the glaciers and so he said um i want to go on the portage glacier cruise james just previously had had a couple of um pretty good falls so i said let's stop on our way um we'll stop at sportsman's warehouse and check out some trek polls because james had said a few times that he thought that might be beneficial to them um so we actually we stopped we bought trek poles that i don't think you've ever used once i i walked outside a little bit last fall with them but yeah i just didn't get used to them enough yeah well while we were there we saw a basket full of canes and so we went ahead and bought him a cane so that was when he started with his cane we went we had a fabulous time on our portage glacier cruise that went really well and he's been using his cane ever since gotten a ton of compliments uh on it and uh so it looks kind of classy it's always you know kind of a fun conversation starter yeah uh we went to vegas and uh got a lot of compliments on my team there it was fun yeah it's a it's interesting because we got it at sportsman's warehouse you wouldn't pay to get a can at sportsman's warehouse first of all and then second of all the one that you know um people see is so classy and yeah i'm nice so anyways um yeah it's been the last couple months though at walmart trips james has discovered that actually getting in the little scooter makes a big difference but then again i was hesitant to do that because i felt like i was losing the freedom of walking um but i couldn't keep up i had to take a lot of breaks and once i tried it i found that i really liked it because um it gave me freedom again that i was feeling like i had lost to go around and have a look at whatever i wanted there were there were a lot of times too we would be in the store wandering around together and and james would say mercy i'm i'm tired too much and then he'd go sit in the on the bench by the door and then i'd you know finish scurrying around finish up my job you know my my shopping and um and meet him at the at the door so with the scooter how how has it how much of your hesitancy had to do with pride like honestly was there i'm just curious and we've never really talked about that but you know that's a good question um i think there was i think there was some pride in there i think some fear um yeah some sadness of losing the ability of doing things that i used to be able to do and i'm losing that ability um but i have found that people are very respectful um i found some people act like they don't see me when i'm in a car really which is yeah which has been interesting interesting until i start talking to them and then then um so before you ever got in the scooter did you did you have fears of of how other people would see you or what other people would think of you yeah i would so i think yeah i think that that would kind of be where i don't know the stigmas of the right word yeah of uh being handicapped um [Music] you know i i yeah i just never thought it was going to be that was going to be me i always thought i would be the one helping the person right in need of help i didn't think that was going to be me so yeah i think you know thanks to my counseling um and yeah just just my therapist at my ot and pt um they've helped a lot with with these kinds of issues and just reassuring and you have yeah i find it interesting because now um you almost like scurry away from me you're on your little scooter and and he'll go he'll like zoom away and go you know go over and i see him talking to someone and he'll come back and be like what are you doing he's like i just want to tell that guy what a nice hat he had you know and so um yeah it's kind of fun to have you almost scurry as quickly as i do zooming around together yeah yeah so it has it's given me a lot of freedom so it's it's a positive thing um yeah positive interactions and yeah i think only one time i think i had my cane and i think the guy didn't see that i had my cane and i had accidentally stepped in front of him and so i think he had taken some offense until he realized i could hardly walk yeah so but that that was just a very isolated incident that's never happened again yeah so so some other ways to get around like um i think we've mentioned before that james is not wheelchair-bound we have we have used the wheelchair a few times so our experience with wheelchairs is very positive yeah um so last year when we went down to johns hopkins um in january of 21 um we we had a couple layovers between alaska and um washington dc where we flew into and um one layover in denver colorado was a pretty long was like five hours we got there really early in the morning like the airport was almost it seemed like it was almost shut down there was just hardly any people there and so we had a pretty long walk to the next concourse um and but it was okay because we had so much time um we just went slowly you know and stopped and took breaks and i i looked at james i looked him in the eye and i said james i said you know i mean this is this was before we even had our diagnosis of inclusion body myositis um but i but i told him i said if you feel the need or if you see you know that this that would be beneficial do not feel uh you know it's okay yeah it's okay to um to get a wheelchair so um so we had that we had talked about that and then that took me that took me some time to to mull that over process that um a wheelchair to me felt like a big next uh step down i don't know um yeah so we so we then flew into washington dc and as we were getting off the plane this felt like a huge god hug yeah definitely it was uh i mean same trip i just felt the need to stop and tell you if you if you feel need for a wheelchair go for it well we were walking off the plane um we were the last ones off the plane so as we were walking off there was a guy standing there with a wheelchair um he said are you you know mr johnson or whatever you know the name was and um we said no no not us and the um flight attendant behind us came right off and she said their last ones off the flight james and i like looked at each other and i was like do you want to help and i said um yes yes i do yeah so he opt in the wheelchair he pushed us for like a solid half hour we got on a bus transport thing he stayed with us every minute and he helped us with our luggage well helped mercy with the luggage because i can't i can't do that anymore i used to but not anymore something you know that something else that has changed um so yeah he pushed us all around and it was great he took us yeah it took us to the car rental place we got our car um and we were headed away from the airport and james looked at me and said we would still be in the airport yeah and i said yeah i know i know so yeah that's just on a side note when um before the symptoms of um of his illness started to really show we had traveled together a couple of times and i remember like just really appreciating like james carried all my stuff it was like the easiest traveling i'd ever done so not anymore now kind of i can with the wheelchair the wheelchair guys have picked that up so we definitely make sure we have cash in our pocket for tiffany chips because they do a great job that first time we didn't we hadn't planned for that we didn't know and so we actually i had to ask the guy where i could go find some cash and he was very happy to tell us so since then um we we've used we've gotten a wheelchair a couple of times like like we said we went to vegas over the summer um awesome trip yeah hot hottest i've ever seen oh my goodness it was so hot um we and we went skydiving sky diving first time for both of us and that was definitely experience you can still do body myositis of course tandem so so um james maybe might have landed harshly on his tandem partner but i thought it was a soft landing you thought was soft yeah maybe anyways um so that was a fun experience anyways while we were in vegas uh it was james's first time being there and um we of course if you've ever been to vegas you know that involves a lot of walking around a lot of sightseeing which is another thing that i had not really thought about and considered um until we talked about it later but uh sightseeing you know it was something i loved to do i loved going going to museums and things like that yeah it's looking at the nature and seeing the animals yeah seeing new places yeah um so it so when james walks now that becomes a very conscious effort to pay attention to where his feet are at um where he's going and looking forward surfaces slick surfaces uneven surfaces yeah looking out for anything that would be unsafe so he doesn't really get to just kind of walk along and check things out as he's going and look at people watching like yeah so when he walks a lot of times um he'll stop and i don't know if he's stopping because he's tired or if he just wants to stop and look around and i think there were there was a long time um i wasn't aware what was happening when he would just stop and but in it and it's taken you know over the year conversations and things that we've talked about for us to come to the for me to come to the realization that both of those things are possibly happening either he needs a break or he just wants to take a moment to take things in it reminds me of the time we absolutely go to uh we love our church we absolutely love our church and we went to uh they called the fear not festival it happens around halloween time and uh so mercy and i went in ezra and we went to go and participate and it was very very with coveted and everything it was very popular and so the kids were all excited there was the awesome awesome games and it was packed packed and so i found this just new um i hadn't processed it i wanted to get up against uh a corner or a wall with my back to it because i was afraid i was going to get knocked down and so unfortunately which since i love people and i love interacting um now i have more fear of just getting knocked down in those kinds of uh environments or situations yeah so we need to i think what maybe you know in in the future when we might have that sort of a situation we might need to maybe get there early and find a good seat and set you somewhere and just let people come to you yeah um james really likes to get about around and talk to people and check things out and look him over and that night was definitely he was up against the wall and pretty much didn't move but yeah it was nobody's fault no no no it was just a lot of people there um yeah yeah um so anyways uh in vegas um we we spent some time with my cousin and her husband jack jack and vicki jack and vicky hey guys and um just really enjoyed their company i think it might have been and they didn't say anything that was hurtful or disrespectful or anything but i think it might have been a little bit um hard for them to get used to moving out slower yeah which you know i've been working on getting used to that and so you've had a long time they mentioned a few times the possibility of maybe trying to rent a um a wheelchair or something like that so after they left we did um borrow one from the hotel one day yeah and and you know and so that day i pushed james around you know i don't know four or five hours pushed him around um the uh caesars palace i think is where we were at and um i liked it so my perspective it was great he was able to look around and yeah take everything in and not be worried about where your feet were going to step up and yeah i did not like it no i don't think i told james that day um he he he enjoyed it so much and i was happy for him to have that but i'll tell you what it was hot there um it was 117. now like i said the hottest i've ever seen yeah and it's hard to push someone around in a wheelchair but what i really missed was um feeling like i was present with james you know when we walk side by side we can stop and look each other in the face and have conversations when he's in a wheelchair he's in front of me and i'm pushing him and i'm just checking out everything and it doesn't feel like we're together yeah so that was in june and then in september time for the alaska state fair yeah which uh historically i've always loved going to the fair i love going looking at the vegetables the animals um the displays the art um the watching the kids pet the lambs or whatever i like shopping shopping and eating yup i do too coffee getting good coffee yeah good fair you gotta get your fair food you gotta do a little bit of shopping so we this was this was kind of a new a new thing that i had not processed i had not thought about i was excited uh we were taking ezra we met some family there and so we got there and it hit me very quickly that there were thousands of people walking walking around and i was watching them and we'd agree that we wouldn't get a wheelchair right away i would go as long as i could so we had talked about it and that was when i shared with james that the experience how that was for me in vegas um just that i would rather walk slowly stop and take a lot of breaks and have that presence where we were where it felt like we were there together we both of us had been to the alaska state fair many times throughout our lives and so i told them i was like if we don't get very far it's not like we're going to miss out we've missed something yeah um but yeah it hit me hard that day um that how much it bothered me that i couldn't scurry around i don't know if i ever really scurried whatever made my way however what speed that was um i couldn't do it like i used to and so a mercy um we talked and she said i'm gonna go there's some shops i want to go check out i was watching a magic show or whatever and i realized then just sitting there and watching people watching the show that realizing that historically i love the fair i used to love just running all over now i can't and so i felt i felt i think really that day i did some grieving um and felt the sadness and the uh the loss of that that day and so um we went to the billy idol concert that night so we did get a a wheelchair we did at the end of the day yeah abby king we met with everyone and she was an awesome so during the day we did we did walk about and and james used his cane and and when he'd get tired he'd stop and take a break and he maybe stop and watch a show and i would i would scurry off go do a little shopping i had places i wanted to go in particular and then come back and find him and um so you know it was uh not as much together but i think more so than it would have been if you'd been in a wheelchair the whole day right but yeah so we got one at the end of the at the end of the day right before the concert and um and abby was quite content pushing around was fun that was it was fun to spend that time with her yeah yeah sister abby and so um yeah so that's kind of our our our experience with wheelchairs to this day my you know i mean i there's so much we still have to learn and so much we need to to experience but um you know obviously my hope is that it'll be some sort of powered wheelchair when when we get to the point where you're using it on a regular basis and it's not me pushing you around right and so yeah speaking of power things i've used the scooter you know like we said at walmart and that that has helped so much and safely and grocery shopping and things and uh then we can kind of be side by side you know so that's just an advantage and talk and you know yeah it's so important yeah and so i think more than anything what we've what we've learned over the last um year and a half or so is we have a lot of things to adjust to a lot of things to adapt to but it's just constantly about communicating with each other um there's difficulties there's feelings that james goes through there's times i don't even know what they are yeah um [Music] yeah we were out and about and i saw a woman stuck in the snow in her vehicle and the next thing i know she had gotten out and she was she was looked like she was going to work or something she was nicely dressed next thing i know she was in that gray sloppy snow down on her knees um digging with her hands and so it was mercy and i were together it was my first instinct to want to go and help her and later that night of course i didn't because i would have never got up off the ground but later that night i felt i felt uh i think um loss and i was angry you know yeah you were easily agitated yeah i was agitated that night and after processing i realized um and i wasn't specifically thinking of that instance but it just takes me a while sometimes and patience on ezra and mercy's part um and a lot of times i go back and apologize for you know i guys i don't even know what was wrong you know and so then we communicate more and i just think that that is such a such an important aspect of this is a communication communication is so important yeah and sometimes when we and we don't know what's going on and if we just communicate then we can process that together right um you know the whole like stopping in the store and then seeing him stop and like no come on like you know i just wanted to catch up and right and then you know that had happened a few times before we actually discussed what was going on with each of us separately it doesn't it takes a little while for it to uh you know hit us or or compute um yeah yeah so anyways again we are just super excited to share a journey with you guys um talk about how we adjust how we adapt talk about feelings and emotions that we're having we have been so excited and encouraged by um all the messages that we've gotten by all the ways that um you know all the all the people that have watched our videos and have subscribed to our channels and we just really uh are excited excited that other people are being affected and we want to keep going if you haven't subscribed to our channel i'm gonna go ahead and do that shameless plug and ask you we have almost 100 subscribers if i knew how if i knew how to know who subscribed when i would do some kind of a prize if you were 100th subscriber but i don't know how to do that so we're learning this is a learning process for us too just real quick you've heard me mention ezra ezra come here real quick just want to as ezra has been a huge help i can help you guys with that though i don't know he can he he does his own youtubes but i just ezra has been such a help with me um around the house and things like that and so i really appreciate him we will see you all next time we're off to johns hopkins here and then in like two days yeah so thanks again guys see ya see you soon bye

Channel: My Life With A Chronic Illness #myositis

Views: 579

Keywords: Inclusion Body Myositis, Myositis, IBM, Chronic illness, Living with chronic illness, Walking around with chronic illness, Getting out and about with Myositis

Id: rps3ctyHlC0

Length: 35min 42sec (2142 seconds)

Published: Wed Mar 09 2022