Category Archives: Disability

February is almost over?

I know, I know. It’s been soooo long since I last posted. Almost a full month, can you believe that? It’s not that I have nothing going on that I could be writing about, or thoughts to share. It’s more of a quiet rebellion, the not sharing. I guess. But then I’m reading Anne Lamott recently and she inspires me to write. So I’m back again. For now.

At the end of last year I was feeling like I had this disability thing down, and then of course I realized I didn’t. Because I never will, entirely. I think what I was hoping for, striving for, was perfection in living. And I seem to remember learning that perfectionism is a curse. But how quickly we forget the most important lessons.

So how has it been? I have been tired. Continually tired and fatigued. I have my good days, or my good portions of days, but mostly they are clouded by the ever-present need for sleep and rest. This is tough for a reforming overachiever to accept, because there is so much to DO, and I can’t do it all the way I want, or when I want. I’m pretty sure I’m the only soul who really cares about that, so I could probably let that go, right?

I’m trying to learn how to relax, which as I type this I see that’s paradoxical. Trying to relax is absurd. Futile. There has to be a better way. So then I stop trying so hard, and I wait to see if it just happens, and it does! I start to relax! And then I remember there is so much left to DO, and the guilt creeps in. Back to square one. It’s a vicious and annoying cycle.

But! I have coping mechanisms for exiting the cycle. I crochet, I read, I make soup, I pray. Soup is nice, but prayer works best.

Do you know what I think it is? What’s so hard for me? I worked for so long, so many years at jobs where you got up every morning and went to work, that it’s a complete paradigm shift to be home. No one expects me to be anywhere at a certain time. I went from a full schedule to no schedule, and five years later I still haven’t got the hang of it. But I will, eventually.

All this time I’ve been quiet on the blog I’ve been busy in real life spending time with family and friends. Good, quality time, and it’s been really nice. We had some awful winter weather here in Michigan and the kids missed a lot of school, so it was fun to have them home with me even if it messed up my daily routines a little.

So that’s all I have for now, folks. Just a partially muddled brain dump. I hope you’re all having a great day today. It’s Friday! For most of you working people that means the weekend is almost here! Hurray!

“My first job was working in an orange juice factory, but I got canned…couldn’t concentrate.”

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Rainy days

It’s raining today. Storming, actually. It’s been awhile since we had a thunderstorm during the day like this. We’ve had a couple overnight, but those are no fun because I can’t hear the thunder. I don’t wear my cochlear implants overnight. Usually my daughter tells me all about the storms the next day because though she usually sleeps soundly, she is sensitive to the noise. That and she worries about lightning striking and all that. So it makes for rough nights for her, while I secretly envy that she can hear the thunder.

So. Today’s storm is nice. It’s dark and cloudy though, which makes me want to go back to bed (which I did) and stay in my pajamas all day (which I am). I’m also roasting a butternut squash to make soup, so the house smells like autumn. My sister and I have our annual retreat to the monastery this weekend, and this year we decided against planning an elaborate menu and instead are each bringing a homemade soup. We think between soup, salad, and snacks, we should be set for the weekend.

My plan for this year’s retreat is to get a big head start on my book. I want to read through the past five years of journals in order to get an outline or map of sorts of what I’m going to say. That’s a giant task and not something I feel like I can do sufficiently while I’m here at home. Distractions and all. I am very easily distracted.

I still feel like I have this nagging voice that tells me I can’t write a book, not one worth publishing anyhow. That voice I need to just keep telling to shut up. Lots of people less qualified than me have written books so I have no reason to believe that voice.

What else is going on? I started leading Financial Peace University this week for my church. We have a small group but it happens to be very diverse. People from every walk of life. Newlyweds, single, married with kids, empty nesters. It should make for some really interesting discussions as the weeks go on. I’m very excited to be doing this class. For one thing, I needed the refresher, for sure. But also it just feels good to be able to give back and serve God in an area I feel like He’s given me a passion for. I was a ball of nerves this first week, because my vision loss and difficulty hearing still give me great social anxiety, but everyone was extremely understanding and gracious. I’m confident it’s going to be a life-changing class for everyone.

Speaking of social anxiety, I’m also in a women’s weekly Bible study and yesterday was my first time going. I attended last year and loved it so much, I’m doing it again. However, I had a lot of trouble hearing people in the discussions as well as reading the materials they hand out every week. There’s not a whole lot I can do about the discussion because you can’t expect to completely retrain people to speak a different way just for that one hour a week, so I’m learning this is an area I have to accept not being able to hear everything. I just have to accept and be thankful for the words I CAN hear.

As for the lesson handouts, I had been scanning them into pdfs every week so that I could read them in high contrast on my computer or tablet. That was kind of a pain, but it worked well. It only occurred to me after the class had ended that I should have been scanning my answers to the questions as well, because every week I would get to class and struggle to read my answers during the class discussion. This year I am super excited because they offer the lessons and questions in pdf format, so I don’t have to do all the scanning! It may be hard for others to understand my level of joy here, because until you’re faced with the daily difficulty in seeing and hearing things, you just can’t imagine it. I know it’s something I took for granted, for sure. If you are reading this and you have fully functioning eyes and ears, will you please just take a moment to thank the Lord? Because not everybody has that luxury. It’s so hard, people. Not impossible, just hard.

Well, my squash is roasted so I need to go saute some shallots and garlic and get the soup assembled. After that perhaps I’ll do some crocheting. I’m on my third of thirteen afghans for each of the nieces and nephews. A perfect rainy day activity, wouldn’t you say?

Drop me in the river

My daughter and I went camping last weekend. We left on Wednesday and came back Sunday so it was a little more than a weekend. My kids (and sometimes me too) have camped with the church my dad was pastoring for the past four or five years. He is no longer pastoring the church because he is retired, but the people really bonded with us and invited us back this year. I’m so glad we went, and I hope to join them in future years, but the whole time I was there I was dreaming that we could do similar trips with our own church family back home. Someday. We’re still growing. Right now we do a camp thing but it’s just one night and it’s held on one of the family’s properties. Also, my family has not yet been able to go. Conflicting schedules and all that.

Anyhoo. The camping trip for me consisted of a lot of relaxing on the porch of our cabin, crocheting and reading. The occasional walk around the campground to chat with people. I did not see much of my daughter because she was off riding her bike and playing with the other girls. One of the girls had brought about a dozen headbands with mermaid sequin cat ears, so they each wore a headband for the duration of camp. They dubbed themselves the “kitty cat club” and I can’t even tell you how that warms my heart. That all these young girls so quickly bonded. All of the mothers and grandmothers were touched to see their bond and we hope to keep them all in touch by good old fashioned snail mail. Perhaps they can remain friends throughout school, and make appearances at each other’s graduation parties. The last night of camp they all sat around and cried because they were sad that camp was ending and they wouldn’t see each other again for a very long time, if ever.

The first full day we were there we went for a canoe ride on the river. It was so wonderful and peaceful. Until the very end. Just at the end where everyone docks we hit a large rock or log and the current of the river yanked us over. Y’all, I was so freaking scared. I saw Natalie and her friend floating away towards the dock, and then I saw my AquaMic, my waterproof case for my cochlear implant, floating away. It had come off my head and life vest in the fall, and I was struggling to catch it before it was lost forever. It took a couple grabs but I was able to secure it and get back to shore. That’s when I saw my shoe floating away. Gah! Just a shoe, I know, but still. One of the older boys at the shore, or the gentleman who had been steering our canoe, I’m not sure, was able to get to where the shoe was and grab it for me. I did not want to have to walk around camp the rest of the weekend in flip flops. But really, I was mainly happy to be on dry land and could see that Natalie and her friend had made it safely to shore as well. When I walked over to her, she was almost in tears. She said she thought she was going to lose me. That’s when I realized that I must have put on quite a spectacle of fear when I was trying not to lose my precious cochlear implant. I felt really bad but she got over it pretty quickly once we went and got ice cream, so it was fine.

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Oh, I almost forgot about my phone. I was wearing my running belt to hold money for ice cream and my phone in a Ziploc bag. I took it out at the ice cream shop to check it and realized right away that it was not doing well. Those Ziploc bags are not airtight, I guess. Or I hadn’t closed it tight enough. I freaked out a ton because my phone is my connection to the world, as I’m sure it is for most people, but my nextdoor cabin neighbor had rice that I was able to leave the phone in for the remainder of camp. It didn’t fix it completely, as I still can’t use my “back” button unless I use the phone’s stylus, but it’s otherwise fine. Answers calls, sends texts, my books are all still there. It even charges normally. So it’s only minorly disabled. Kinda like me, you could say.

The day after that canoe event we had a tug of war between the guys and gals. The tricky thing is that they do tug of war in the river. It’s shallow at the shore but it’s quite rocky and the rocks are sharp and slippery. I tripped/slipped on a fairly large rock and bruised my shin pretty well, and then went on to assist the girls in winning a match. When they made us switch sides it was a different story because that’s where all the rocks were so it was almost impossible to gain a good footing. They tried to get me to join them the following day for a rematch but I told them no. That river and me were broke up and I had no interest in going back for more abuse.

I was pretty wrecked by Saturday afternoon, and kind of ready to go home. My legs weren’t moving right, I had bruises and pulled muscles all over the place, and I missed my shower. So I’m very happy to be home, but my body is telling me it’s still not recovered from all the activity, so I’ve dubbed this entire week a Week of Recovery. I’ll be resting as much as possible, with the hope that I’ll be back to working conditions by Monday.

 

Running out of gas

I think this week I’ve been approaching a wall. Lately I’ve been doing really well, energy wise, but this week I’ve noticed myself dragging quite a bit more. I am not the Energizer Bunny. Monday I slept until 11:11. That’s about 4 hours later than usual. Every day I debate whether to push myself or to take the hint and rest. I feel like I’ve found an okay balance between the two options, but I still have that nagging feeling that I need a major reset. Each night I go to bed hoping that night’s sleep will be the reset button. Maybe tonight! We’ll see.

Oh! I’m running a fun 5k on Friday night. It’s not chip timed, so it’s not exactly competitive. However, everyone will have squirt guns so it should be fun. I’m a smidge nervous because I won’t be able to wear my cochlear implants, but I’ll be running with a friend so I’ll have her to keep an eye out for me in case anyone is shouting at me to move aside or something.

I’m still seeing a counselor for my anxiety and she’s still really helping me. I don’t go as frequently now but I still have her suggestions to take with me throughout each day, and I’m constantly analyzing my inner thoughts to retrace how I got to each state of anxiety, and that’s actually really helping. I tell myself a lot of lies, apparently. So it’s good to be working that out. I’m taking every thought captive, just like that Bible verse in 2 Corinthians. Make each thought obedient to Christ, as in make sure it’s truth!

I am making a LOT of new friends at our church, and that’s been exciting. It’s nerve-wracking at first, because it feels scary to put myself out there and introduce myself to new people who didn’t know me prior to my hearing and vision loss. It doesn’t help that I keep introducing myself to people I’ve already met. The handful of people I’ve done that with don’t seem to mind. They just smile, shake my hand and say “we’ve already met, but that’s ok!” I’m leading a Financial Peace University class in September so I’ll have even more opportunities to re-introduce myself to people! Keeps life interesting, I guess.

Summer is half over, I know, but I’m just now getting the hang of it, I believe. We have a couple trips planned in the next month or so, stuff the kids can look forward to, but with enough down time in between to recover from all the fun we’ll be having. And then before you know it the kids will be back in school. Our son is starting middle school this year so he’ll be on an earlier schedule than his sister. He’ll have to be at the bus stop by 6:30, so we’ll have to get him used to waking up super early. I have been joking with him that he’s on his own here, that no way I’m getting up that early, but we all know I am too much of a control freak to let him fly without any supervision. So I’ll have to start getting used to being up early, if only to supervise for awhile.

Well, I have CrossFit in the morning so I need to sign off for now. Good night bloggy people!

Another random, lame update

It’s Wednesday. I had a great visit with my neurologist this morning. It was nice to be able to tell her about all of the positive changes I’ve been making and my lack of MS symptoms. However, I did bring up my concerns with brain fog. A friend shared a really great article the other day about this, and it very eloquently listed what people with chronic illness experience. Sadly, it’s not just limited to people with MS. I am walking great, I have no fatigue, no pain (unless you count the occasional headache), and I’m overall feeling really fantastic. However, every day, throughout the days, I have issues with short term memory loss and cognitive function. I can’t tell you how many times I’ve walked up the stairs and forgotten why I was there. I will often use a wrong word or name when talking with people, and not realize it. Sometimes even, I’ll forget what I’m talking about mid-sentence. And friends and family will encourage me that this is just a normal part of aging and that they experience it too. Which is nice, and appreciated for sure, but I really don’t believe that they experience this phenomenon with the frequency I do. So I told my neurologist about this and she said it may or not be MS, but there are ways to check, starting with testing my blood to see if some of my levels are out of whack. If that’s the case, I suppose it’s a simple fix with supplements. If not, there is always the option of memory testing and exercises. I had no idea that sort of thing existed, so it gave me some hope that this is a problem that has been addressed by the medical community, and I’m not coming in with some sort of weird cognitive mystery.

In other news, I slacked on laundry for one measly day and it magically piled up and threatened to take over my bedroom. I folded (and put away!) five loads of laundry today and now I would love to nap but I need to stay awake so I can answer questions for my grocery shopper, and then be up when she delivers my groceries. I LOVE grocery delivery, people. Love it.

So I think I’m going to make a glass of sweet tea and read a book or do some crocheting while I wait.

April 30

What shall we talk about today, friends?

Baseball season has begun for my son and husband (he is a coach for the team). Their first tournament was last weekend and the girls didn’t go because it was ridiculous cold and windy and we are wimps about that. So we stayed home and my daughter watched YouTube for 38 hours while I played around in the kitchen making delicious vegan food.

Dance is in full swing for my daughter as they prepare for their recital in June. I received an information packet about all that is required for the recital and OH EM GEE am I overwhelmed! There is a dress rehearsal and requirements for hair and makeup and this is so out of my comfort zone. I was never in dance and I don’t wear makeup (much). I don’t own eyeliner or lipstick, so how am I gonna know how to put it on my daughter?? I don’t know, but I definitely plan to enlist some help on this one.

I have to mention that lately I am obsessed with this vegan cashew “mozzarella”. It is so easy to make and super duper yummy. I add it to everything I can think of, but my favorite use for it is grilled cheese sammiches! My husband will tell you I make the best grilled cheese sandwiches, and I won’t deny his assessment. I make a lot of them, and I’m always really sad that I can’t eat them, because YUM. But now, with this cheese? I’m in sandwich heaven! I also bought little mini pizza crusts and sauce so I can make my own little veggie pizzas at home. With cheese! So that’s what’s on the menu for today and my tummy is growling just telling you about it.

I’ve been running, sporadically. I have a 5k I’m running with my son Friday night so I had to be sure I’m prepared for it. I don’t think I’ll beat prior years’ times, but I’ll be happy if I can finish in under 40 minutes. I ran a full 3 miles today and dang, why is that 3rd mile so much harder than the first two? But I didn’t fall. My left foot was dropping a little, but not nearly as bad as it’s done in the past. I did have nerve pain in my feet but thankfully I didn’t notice it until I was finished with the run.

I always have some anxiety at these races because strangers don’t know that I’m disabled. So if people are trying to get my attention by yelling or waving, it’s not gonna work. I’ve been bumped around during races because people assume I can see to get out of their way, or hear them coming to move aside. So I bought a reflective running vest that says “Deaf Blind”. It’s really bright and in big block letters so there’s no way I won’t be noticed. I feel a little weird about wearing it at the race but I have to convince myself that it WILL make me feel safer, and that’s all that matters. Maybe I’ll even run a little faster, knowing that I’m safer. I guess we’ll see.

Anyhoo, I’m sure there’s more I’m forgetting but I’ll leave it here for now. I’m gonna go make me some vegan pizza! 🙂

Depression looms

I struggle with depression. Back many years ago, I didn’t struggle with it, I just gave in to it. That’s never a good thing. Thankfully at the time I had some wonderful friends who spotted what was going on with me and encouraged me to get help. It was because of that experience that I can usually sense when depression is threatening to take over again. And thankfully I’m not afraid to be open about it with my loved ones, and I know how to ask for help.

For the past month or so I’ve been sort of dipping my toes into the pool of depression again. It’s not a game I like to play. I can drive myself crazy analyzing the potential causes, searching for solutions. It’s all a bit futile, if you ask me. There are so many factors that make me a potential victim. Family history, multiple sclerosis, recent trauma… oh, and can’t leave out living in Michigan where there is a severe lack of sunshine. I need my sunshine.

I’ve been sleeping a lot, and it concerns me that I could let that go too far. I do feel rested when I sleep, so I’m trying to listen to my body’s cues and determine when it really needs rest or when it’s just the depression killing my motivation. I made a list today of some coping mechanisms. This is based off of what I learned from my housekeeping hero, The FlyLady, a long time ago: you can do anything for 15 minutes. So I have a list of the things I can do for 15 minutes, so that when I’m lacking motivation, I don’t have to think about what I can do. I just have to pick from the list. These are all things that tend to make me feel better or motivated to stay up and out of bed, like crocheting, washing dishes, journaling, showering, paying bills (no kidding lol), and blogging. On the really bad days when I can’t muster enough oomph to do even those simple things, my short list of motivators is to wash my face, get dressed, take my medicine, and/or drink a glass of water.

Depression is real, man. A dragon that is so unbelievably difficult to slay. But one day at a time, I’ll be fighting it. And if I can’t kill it, at least I’ll leave it seriously wounded, while I move on with my life.