Triathlon

So a month ago I wrote about my training plans. Since then two things have happened. The first is that I got really sick with something. I don't know what. But I had zero energy and resting didn't help and was incapable of doing most things. I did get check out  by my doctor and everything came back good and I am really healthy just in general. So it was probably just stress and a virus. But I lost almost a week on working out. It happened on a Saturday. And by Thursday I thought enough is enough and started feeling better. I did a walk and yoga and was tired after. The next day I did a short 20 minute swim and almost didn't make it through the day. So it was a bit of a climb back to do what I usually do. In the midst of that I was talking to my therapist and he asked if I was looking forward to anything. And I said no. But I had been wondering about doing the sprint in October I've been planning on most of the year. When I was sick, I realized I didn't want to. I am tired. I'd already decided no more long distance races for the next year so I don't have anything planned after the sprint. I was already planning on a more relaxed year after that. So instead I'll start that early. After the super sprint I have on Saturday I am going to take a break. I want to work on continuing all the sports but in a less urgent way. Maybe 3 runs, 1 swim, 1 bike a week. I want to add on more strength training and gain some muscles. Being stronger would help so much with the cardio sports. So weights and strength training is what I'm looking at for the rest of the year. And next year my A race will be the October sprint and I'll plan on less races for the year to avoid burnout. I need to find the fun again in all of this. I am constantly stressed my life and my husband's condition that I need to find more fun and the fun I had with my workouts. This seems like a good place to start.

Morning time

As I was waking everyone up this morning, it dawned on me how different my morning routine is. It was get up, children to bus, work. Fairly simple. But this school year has some changes thanks to my son graduating to middle school, my huband's continued degeneration, and my daughter's bus schedule being messed up.

The original plan for this year started fairly simple. They both have a bus stop in the same location. Because they go to the arts academies for their grades, the bus does not pass by my house. Rather I have to take them to a satellite location. And the fact that that location is the same for them should make it easy. However, Bub's bus doesn't come until close to 8:00. I have to be at work at 7:30. So yeah. Finally I decided to put him in morning care. It's fairly inexpensive for the morning program at his school. So I had planned to drop her at the bus, take him to school, get to work fairly on time. But then her bus situation got messed up thanks to the driver quitting days before the start of school. So then her bus wasn't coming until close to 8:00. The end result is that she ended up in morning care as well. The expense of both these programs is not great but it's the best solution otherwise.

So now I get up (still working on finding early morning time to run/exercise, for now that is being done in the evenings), and wake up Bub and get him in the shower, wake up LG and put her clothes out so she can change and then start getting ready myself. They either can have breakfast at home or at school, their choice. I get ready myself. Before we leave, I wake up BT who has taken to sleeping in the recliner so he can sleep more upright and also it is easier for him to get in and out of (we are working on a hospital bed for him to aid in this). I help BT out of the chair and we go. Then I drop off Bub at school, drive to LG's school and sign her in and then I go to work. It's a lot. I don't know if it sounds like a lot but it's a lot. It's a lot of driving and getting everyone where they need to go and helping them all out while still trying to get my own stuff together and make to work. But it's the best way and honestly has been less stressful. There are, of course, even less stressful ways to manage. I could pull them and make them go to our home schools and then they would be bused to and from the house. That is not an option for me. I love the arts academies and they are getting a great education and learning an in-depth art form at the same time. And I believe wholeheartedly in that. So this is what we are doing and I'm trying to make it work as best I can.

10 years

I was looking at some old posts and I realized that today is the anniversary of this blog and that it has been 10 years since I started this blog. It's been named different things and I've been on and off with it for those 10 years but I keep coming back. I didn't write or do much of anything for a year after BT's diagnosis but then I was honestly in the middle of a breakdown. I've found writing down some of this stuff lately has been cathartic even if no one is reading this anymore. I'm fine with that. I just like saying stuff "outloud," writing down my thoughts. Still I think it is really neat that I've managed to save something for a decade.

Baaaack to school

The kids start school this week and as usual I am of two minds. School usually ramps up the responsibility at my house but it's, you know, school so it's important. School is a lot for me thought. As the mom I shouldn't admit that? But it's true. The burden of transportation, school functions, and everything that goes into school is down to me especially now as the only driving adult in the family. My children goes to arts schools so there are no buses that run near my house. I love the arts elementary so much so it's worth it but it is a pain. And now my oldest is headed off to middle school which is scary for me but he seems chill about it so far. It was a nice couple of years having them in the same place. Certainly that made it easier. Now 2 different schools, buses and schedules. It'll work out especially now that I have figured out exactly how to get my son to school without being overly late for work. His school starts later so his bus comes later, thankfully to the same location as hers. But he isn't zoned for that bus stop so all of that had to be worked out. He'll go to the before school program run by the YMCA and then take the bus in the afternoon and then they will both get dropped off in the same place. It's not the cheapest plans but it's worth it. And they will have time for their evening sports.


I am amazed that she is going into first grade and he is going into sixth and the fact that he is going to middle school is like wow. It's crazy to me that we've already gotten to this point. I am worried about middle school. It's a rough time and a rough age and middle schoolers are not necessarily the nicest. I think he will be fine but he can be sensitive so I guess we'll see. It's also just more. More homework, more classes, and a different routine with changing rooms multiple times a day which won't be a bad thing. He can move around more during the day and he'll have to go outside to change rooms so that actually is a good thing. I also realized that this will be the first time he has to dress out for P.E.  His middle school is a great school and the arts program is amazing. He got in with piano and that is the art that he will focus on. I am so happy with the decision to put him in the arts academy and grateful that this school district offers the option and that LG could go to that school too. I'm curious what her art will be. I'd say drama or dance based on her personality. Drama seems to be the better fit.

But now it's time for homework and parent/teacher meetings among other things. And I handle all of that but I also feel bad because BT misses out on so much. Most of the time it is easier for me to just get the kids from school or from the bus and then go to any open house meetings or to just go to school for lunch or any school activities. Their schools are really close to my work and it's just easier. But I feel bad because I probably should go get him more. It's a rough balance between trying not to miss too much work and trying to include him. There is the factor that things make him very tired and it can be hard to negotiate any crowded venues with his chair. So far we've managed to work it out but I think we both feel bad about him missing out on too much. It's just one of those unfortunate things and will work out how they work out. 

And the kids

Once BT was initially diagnosed the question of what to tell the kids was immediate. Obviously something had to be said since BT would no longer be working and they would definitely notice that. There was a month gap between the first and second opinion where everyone just kept hoping that it was going to be something else and BT was still working. In that gap I consulted our pediatrician who has cared for Bub since he was a newborn. It's one of the few times I've ever seen a doctor visibly upset. I asked him what was appropriate to say.  He recommended a simple explanation but not to include the fact that it is terminal. Bub was 9 and LG was 4 at the time. We told them that Dad was sick now, he wasn't going to get better, and that he wasn't going to work anymore. Their reactions were very accepting. LG went around telling everyone that her dad was sick and wouldn't get any better. Bub was sad and asked more questions. It was a different way of processing fairly appropriate to their ages. As time has gone on, Bub has begun to ask more questions about BT's condition. LG has been more accepting. They both have been big helps to their dad although still expect a lot more out of me somehow. It's been also a sad thing knowing what's to come but there is a lady we know who grew up with a father with ALS and she talks more positively about her experience so I feel like the time BT spends with his kids will be hopefully result in something similar.

One day recently Bub asked me about how long we would live. I talked about the average life span of my grandparents and guessed 30-40 more years for me all things considered, hoping that he would drop the subject of his dad. He did not and I answered with Well it depends on how his ALS progresses and then he asked if the ALS could kill  his dad. I never want to lie to my kids but there is information I don't volunteer unless they ask. So I answered yes but that it all depends on how quickly things go. There is no time limit. These are the moments that I get, that no one else gets and they are sad moments. He took this pretty well and he has been processing, I believe, fairly well. And has been very good to his dad this summer. I hope that this summer and the summers to come where he is home with BT are good, positive memories and that they have quite a few more.

A bit about caregiving

There's a lot of (unnecessary) guilt around my house. The thing about this kind of illness is that it robs so much from everyone. Someone who was once very independent now needs help with the simplest of tasks like opening a can or toweling off and dressing after a shower. It's a lot of adjustment losing abilities. But also an adjustment for me picking up more care for him. Before it was a lot of joint care for the kids. Now it's that plus what he use to do for them and all the new stuff that he can't do anymore. Right now at least he is doing some of the other stuff like reading with LG and still doing some of the easier cooking though he is teaching me how to cook some stuff. But that's another thing. BT's ability to cook is diminishing and so I have to take on more of that. It's just more and more. I have a good support system in that my parents live by and are willing to help out. Among the many things that they do, my dad drives BT to his infusion treatments that take place once a month and does yard work. My mom gets the kids after school and takes them to their various sports activities. So that is extremely helpful and eases my responsibilities. They have been a tremendous help and there is literally no way to repay them.

I'd like to say that I've been the picture of grace about all of this. I have not. I have tried my best, my very best. But it's been a hard road of acceptance that continues on. Every time there is a down slide it gets rough. I wish I could be like the other caregivers I read on the internet, the ones who say that they accept it, that their spouses are their reason for being, that they love being a caregiver even if it is stressful. I don't know if it's words for the internet because no one likes admitting the ungracious side of themselves or if it's true. It is not for me. Maybe if we were older or our kids were grown or if we had managed to do more of the things we wanted to do together but this is not what I wanted, not how I saw things going. And that's obviously true for both of us. The difference is that I saw the future I had envisioned go away in an instance. BT mourns the past and all the things that he never got to do. I mourn the future and how I can't plan for it anymore and how he won't be in it or if he is how different he will be. In 20 years will I be alone or still caring for BT? The truth is the future is hard to predict but before I felt like I could say "Oh when we retire we can do XYZ." I don't feel like that it is true anymore. I try to find something for myself and ideas for my own future. I tend to focus now on the immediate future. What game I want to play, what race I want to do, what vacation we can take next year. I like to have a plan and now that I can't have anything long term I like to at least focus on the short term.

The quest for automation

One of the ways we’ve begun working on to make life easier for my husband is automating the house or at least making it voice controlled. BT’s fine motor control has been one of the first things to go. He has trouble with small objects or anything that requires finite motion. His weakness currently lies in his hands, arms, and legs. So at first we got a Google Home so he could use it for an alarm and to control the thermostat. Recently we added a door bell with a camera so he can see who is at the door and lights that can be controlled with voice commands. It’s a smallish things that help make things easier for him. There’s a few more lights and plugs that we will automate to help around the house. I realize that this is not always possible for a lot of disabled folks. Being disabled is expensive and it is very hard in many ways but instead of birthday presents we get smart lights at my house apparently.

Never not training

So 2 years ago I took up running with Couch to 5k and I’ve done quite a few races; 5ks, 10ks, half marathons as well as 3 super sprint triathlons. I have 1 more of the latter next month and then a sprint tri in October and then I am done for the year. It’ll be weird to be done with the race season so early but I made the decision in March that I was done with long distance running for a while. My last 2 half marathons were torturous at best and I realized I preferred mid distance so 10ks mainly. So I may try to pick up one of those. Anyway. My training this year has felt fairly relaxed. I went hard for so long but I gave myself a break for the most part this year. I’ll have to pick it back up for the sprint since that is going to be longer and my first open water swim. I will admit that there is also something lacking in my training. It’s like the challenge has gone out. I’m not motivated to push for longer distance though I have resolved to do a full marathon at least once after my 42nd birthday. So I bought myself 2 years on that. So what do I strive for? I wish I knew the answer. I do know that I refuse to give up. I never want the day to come where someone says “Do you remember the time you were a runner?” I want it to be “Do you remember when you started running and never looked back?”

I do work hard at being injury free. I’ve found that not running back to back days helps. That the swimming and cycling help. One of the things that has been good is adding strength training but that is one of the areas that I need the most guidance and help.  So I guess there is a challenge.

All this training is interesting in a way. I leaned into it hard as a coping mechanism for my husband’s illness. And not to say that I don’t anymore but that I don’t need it quite like that anymore. I escaped into it but now it’s less of an escape and more of a routine. And I am very attached to my routines. That has become more coping strategy these days though not necessarily a good one since flexibility is becoming more important as time moves on. But exercise and time to maintain a healthy body is necessary for a healthy mindset.

(And if anyone is interested, my instagram is primarily sports related if you want to follow along.)

Where to begin (again)

I started to make a whole new blog dedicated to being a caregiver but the truth is part of me is afraid of placing too much identity into being BT’s caregiver. Truthfully I look for ways to maintain my own individual identity. Yes I am a wife and yes I am a mother and those belong to me but also as me being a part of another.  One of the things that has become clearer to me is the need to have my own identity because one day I’ll be on my own. I decided in the end to start writing here again since this is my personal life blog so there will probably be posts about what is like to care for someone with a progressive degenerative disease. But also about coping and sports and the things I do.

The truth is that life is hard for everyone. I believe in the universal struggle for most people, to be happy, to be loved, to find fulfillment. So I never believe that we are alone or that the thing we face is unique. But it is difficult and a bit unusual.

So since October 2016 when my husband at 38 years old, was diagnosed with ALS, he has gone from being a runner to being mostly wheelchair bound in the short time of his diagnosis. I’m not a doctor but this is an alarming rate to me. And in the meantime I’ve picked up so much of the slack but more than that I’ve gained another person to care for beyond our 2 children. My experiences as a caregiver are not unique but as we are well below the average age for an ALS diagnosis it’s been hard for me to find someone relatable.

Writing about it seems cathartic if I’m being honest though the details may seem uninteresting maybe to most. It’s been hard and continues to get harder. I don’t look to the future much anymore. My motto is Run the mile you are in. I try my best to follow that.