I don’t have a super ton of pet peeves, but here’s one: not using the word “literally” correctly.
As in, “My heart literally went into my stomach.”
No, no it didn’t.
Though that statement literally made me cringe.
Category Archives: Nonsense
Ways I’ve Changed
I used to be an obsessive planner. Internally, more than externally. I mean, if you ask me to plan a party, I’ll cringe, and if I agree, it’s with great reluctance. No, it’s the planning of my days that I used to be obsessive about. What I need to do in the coming days, weeks, months. I have a calendar and I can’t live without it. Or at least that’s how it used to be. Now, it seems, I am finding myself forgetting to even look at it. Which is weird, and sometimes problematic. This past week I forgot to schedule my Spec-tran ride to Bible study. Completely flaked. Didn’t even realize it until the night before, which was too late to schedule. Thankfully a friend was able to drive me, but geesh! Who am I anymore? I’m beginning to wonder. I don’t know if this is a result of all the trauma therapy I’ve done or if it’s perimenopause mucking up my thinking. Could be both, I suppose. I can live with that, I think.
That is all for now. Carry on!
Struggle Bus
Hi there. I feel the need to share the purpose for this blog, my desires for the topics I cover. For a lot of the time it’s just been stream of consciousness, letting you into my dull days. I believe I’m done with that. God has healed me of a lot of things over the last couple years and it’s changing me from the inside out. I’m told by those closest to me I seem the same, but I don’t often recognize myself. What’s changed? I don’t feel the compulsion to overshare. I’m not driven by my anxiety to do things in order for no better reason than to “check the box”.
How that translates here is that I struggle to think of things to blog about. It doesn’t mean I don’t have things going on in my life, it just means that most of it doesn’t fall into the category of what I want this blog to be. I want this blog to be a space for sharing my struggles and victories living with multiple sclerosis.
Right now I’m struggling hard with fatigue, which is no surprise as my monthly infusion is in two days. This means my body has basically used up last month’s dose. One thing that’s changed a little bit with the fatigue is that it doesn’t show as much physically, and I owe that to running and strength training more regularly. However, I am still mentally fatigued and that makes other things difficult. Reading, having conservations, it’s all very hit or miss right now. I probably won’t even go back and proof this post before posting because already I’m fading and can’t seem to complete a thought. I took my cochlear implants off so that I could write in silence, and that seemed to help a bit by eliminating auditory distractions (read: my dogs barking).
So I’m sure this post isn’t a complete thought, from start to finish. I don’t have the energy to proofread and edit. The flow is likely strange, and unfinished, but it hopefully gives you a glimpse into the mind of someone who is struggling with fatigue. It’s really so much more than just being tired. I often have to explain that to people, but less so post-Covid because that seems to be a symptom a lot of people struggled with. I’m not happy anyone had to go through that, but it was satisfying to know more people were able to really empathize with what I go through on a regular basis (that sounds so sinister, but it’s the truth).
And that is all for today, folks. My brain is toast. Back to bed I go. Love to you all 🙂
P.S. There are so many positive things I would love to share with you all, and I hope to do that soon! Hopefully after this next infusion I will have both the time and the energy.
Real Talk
I know it’s been a while since I posted. I’m still writing almost every day, because it’s what I must do for my general sanity, but I haven’t felt a strong need for blogging. Well, that’s not true. This whole blog is pretty much my personal stream of consciousness, and I haven’t wanted to bore you with my thoughts lately. But I’m going to try to get back to it. I’m trying to work some consistency into my life with writing and exercising, so adding blogging into that isn’t a huge stretch. (That’s a lie, I started this post 5 days ago.)
Consistency is a challenge when you are having to work around bouts of fatigue. I never know when it will come and how long it will last. And to be even more honest, it really bothers me that after nearly 15 years with M.S., I still struggle this hard with fatigue. Thankfully it doesn’t send me into a tailspin of depression the way it used to. My brain is getting better at managing, I suppose. Thank you to my therapist for that. And for the Holy Spirit, who whispers wisdom when I make a point to stop and listen.
I’m still running. Still writing. Still deaf, and still mostly blind. I have days when I feel okay with my physical limitations. Days when I’m just putzing around the house, so it doesn’t interfere too much. And then days like last Wednesday, when I was out grocery shopping with a friend. It’s exhausting and psychologically taxing. For someone who lived most of her life as a people pleaser with strong codependent tendencies, it’s a tough switch to not care about bothering the people around me. This is the attitude I must take whenever I am out in public if I have any hope of not collapsing into a puddle of tears. Metaphorically speaking, of course. What I am trying to say is that in order to make it through a store, even a store as small and streamlined as Aldi, I need to put on my blinders and not worry that I might be in other shoppers’ way. There is no sign on my back that warns – “Slow shopper, please excuse” – in order to solve the mystery of why I’m staring for so long at a wall of bread. (They all look so similar and I have to carefully read the labels on the shelves.)
I’m not sharing all that to garner pity or validation (well, maybe just a little). I think I’m mostly sharing it because I want you to remember this the next time you are at the grocery store, or in line at a fast food restaurant, and the person in front of you is taking an excessive amount of time (from your perspective). Maybe there is someone on a motorized scooter parked right in front of the chips you came for, and you have to wait an extra minute or two. Does it irritate you? Does it make you mad? Remember, they are probably just as frustrated having to use the stupid scooter. So please, have some patience please. Your kindness goes a long way.
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So that post went an entirely different direction than I expected. I came back to it today and groaned. This is the life of a writer. Not every day can be a great writing day, but you keep doing it anyway. The catch with blogging is other people are reading your crap writing and may be (gasp!) *judging* you. So I figured I have two options: obsess over every sentence to tweak and make it better, or delete it altogether. I’m going with a third option. Hit publish and move on with my day. I’ll be back with more updates, I’m sure. See you later, folks. Have a beautiful day.
Some Friday Ramblings
**Note, I started this post several days ago and didn’t finish it. I just didn’t feel like I was writing the way that I used to, or would like to, or “should”. All kinds of silly reasons to abandon a post, but whatever. I’ve been trying to hop back into the art of writing that I have loved, on and off, my entire life. After completing that marathon I was exhausted in so many ways and then lots was happening here at home that required my energy and attention, and then Thanksgiving, and on and on with the reasons/excuses for my absence here. I really desire to get back to regular blogging, regular writing. Lots of changes have happened with me over the last two years so I’m hoping “Writing Mel” is still alive here. I believe she is, and we are just dusting her off a bit. Bear with me, por favor. Gracias. Now back to the original post.**
I noticed when I logged onto WordPress today that they had a writing prompt; the question was “what will your life look like in three years?”. Which is interesting to me, because I was just hopping on here to tell you about a discussion I had with my husband recently that was along these lines. We were basically discussing whether we were content with our lives. And if asked that question, I would say that absolutely, I am content. However, if you had asked me 15 years ago if I would have chosen this life for myself, the answer would have been “hell, no.” I would never have chosen to be disabled and unable to work a job. Having multiple sclerosis, being deaf *and* half-blind, simply put – SUCKS. But I’m 10 years into this, and while it’s taken time, I’ve slowly learned to see (not literally, unfortunately lol) and be thankful for the benefits that have come from it. I’ve learned from these struggles. They have made me who I am today, and I love who that is.
I feel like I’m coming into a new season of life. I’m done training for marathons (for the next few years, at least). My kids are teenagers and can feed themselves (and prefer to, actually). The dogs are pretty low maintenance. So now I’m at a point where I’m learning how to rest. I’m learning how to be okay with sitting still. For as long as I can remember, I have had trouble with sitting still. Not that I physically can’t, but that when I do, there is a general unease felt underneath my skin and deep in my spirit. Like I’m “supposed” to be doing something. I’m often noticing my shoulders are hunched up and I need to consciously pull them back down.
I was actually discussing this general unease with a friend the other day, and she expressed how completely opposite she was from me in this regard, and we had a laugh. She seemed like she was saying she rests too much, and finds herself procrastinating. Sounds a bit like we would do well if we came more to the other’s side and met in the middle. But then where would be the fun in that? I love the variety I see in all of my friends and family members. It’s funny to me the things we experience and think are normal for everybody, when really we are all so different in so many ways. It makes life a lot more interesting, and brings us closer together as we support each other in our areas of strength and weakness.
So back to the season of rest. That’s where I am currently. I still have an ongoing list in my head of all the things I want to *do*, but I’m trying to be more kind to myself. While I’ll never regret running that second marathon, I will admit that I made the commitment without full consideration of my limits; physically, mentally, emotionally. So you could say I’m taking a break. Ish. A semi-break. Evaluating what I value most, and then easing those things back in. It feels a little like riding an inner tube on a lazy river. I’m enjoying it so far.
And that, my friends, is a little taste for you of the rambling that goes on in my brain on the daily. You are welcome. See you next time.
School is back in session
This past week has been a challenging week. I was hit with some pretty crummy news on Friday, but I’m dealing with the situation and am trusting God at every step along the way. Pray for me, if you would.
We recently informed the kids they could no longer play video games all day long. From the hours of 10 am to 3 pm on weekdays, they are not allowed to be playing video games. Instead, they need to be cleaning their rooms, completing their regular weekly chores, and doing schoolwork. If all those things are done and they are feeling bored, they are welcome to do extra chores, take the dog for a walk, read a book, etc. Now if they have everything done and they’ve not given us any attitude, we are willing to negotiate extra video game time. Because we’re not monsters, usually.
We’ve known that the teachers at our kids’ schools have been working feverishly to establish online learning programs for the kids, so we’ve been warning them that the corona-vacation is ending any day now. Well, that day has come. We received instructions from all the teachers this week, and tomorrow morning we’ll have our first round of online meetings with teachers. I’m excited that the kids will have something to be working on that’s more engaging then say, Minecraft and Roblox, but I’m so nervous about how this new format is going to work. This is new for everyone so I’m hopeful that we can all be patient and gracious with each other. Again, pray for me.
I don’t know if I had mentioned, but we are still meeting for Bible Study Fellowship, only we meet on Zoom in order to comply with the social distancing. It’s worked out rather well, but I do miss seeing my ladies in person. We only have one week left as a group, and that makes me kind of sad, but relieved at the same time. Especially with this online learning for the kids ramping up. I had decided back around the Christmas break that I wouldn’t be returning next year to be a group leader, but I haven’t told my group yet. I don’t think they’ll care much. People hardly ever get assigned to the same discussion leader. And Lord willing, they’ll still see me around at regular Wednesday classes.
Oh my gosh, y’all. It snowed yesterday. Seriously. I woke up to see the ground covered in white stuff. It was a crazy day. And then here in Michigan we had a bunch of people protesting at the Capitol, which is all political nonsense that I try very hard not to get mixed up in. I absolutely despise politics and I know that probably makes me less of a grown-up, but I don’t care. I just want to stick my fingers in my ears (or just take off my cochlear implants, HA!) and pretend for awhile that it’s not as screwed up as it is. Don’t ask me how I went from snow in April to politics. All of it’s bizarre, and beyond comprehension. Moving on.
I have done almost no writing throughout this quarantine business because, well, it’s hard to write when your mind is distracted by a global pandemic. So I hear. What I’ve been doing instead is reading books and listening to podcasts. I’m actually finishing books I had started but was unable to finish in time. I recently finished The Boys in the Boat, The Greatest Generation, My Grandmother Asked Me to Tell You She’s Sorry, The Glass Castle, and Know My Name. Many of the books have been audio versions, which I find refreshing because they give my eyes a rest, and I can crochet while I’m “reading”. True multi-tasking!
The other hobby I have, at night when I’m too tired to do much of anything, is watching tv on my laptop (the smaller screen helps so I can see most of what’s going on while I read the captions). I have discovered an absolute gem for mental health and getting to sleep at night – Golden Girls reruns on Hulu. Check it out, and let me know if it doesn’t make you smile.
I’m hoping to get out this weekend and run a Bob Ross themed virtual 5k. We shall see. I haven’t run that far in awhile so it might end up to be a lot of walking. The original plan was to run this with friends, but now that we have shelter in place orders, that’s no longer an option. So I’m just going to run three laps around my neighborhood, and call that a race. I may even wear the bib!
I hope you are all doing well, and are safe and healthy. If you’re feeling a little lonely and blue, watch some Golden Girls. They’ll never let you down.
Another List?
Things I’ve learned about myself in the past couple of months:
- I really like the band Cake. Like, a lot. Pandora keeps playing their songs and I have loved every single one of them. Most of them I had never heard before, so it’s cool to find “new” music that is also enjoyable (with the cochlear implants and all…)
- I feel a lot more human when I’m wearing a pair of jeans. As opposed to skirts or leggings or khakis. I know some people don’t find jeans comfortable, but I’m not one of them. Jeans are good. I’m keeping them.
- That’s it. Just those two things. So not really a list, I guess. Sorry if I led you on. I’ll keep writing stuff for you to read, don’t worry. I’m thinking my next post will probably be about food and my wonderful cooking. So stay tuned, I am here for you!!
Make it stop
I’ve had a song stuck in my head for at least the last hour, and for the life of me I don’t know how it got there.
So the earworm of the day is: “If you’re happy and you know it”.
Clap your hands! If you’re happy and you know it clap your hands!
You are welcome.
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.”
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.
Little M.S. Runner 