Category Archives: Visually Impaired

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?

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I’m the boss around here

So, I was doing the dishes today and as I leaned over to put another clean dish in the drying rack I see that there is a full cup of coffee sitting in my Keurig. I stare at it for a second or two, trying to recall brewing a cup of coffee. No one else in this house drinks coffee, so it must have been me. Yet I can’t recall. The cup is cold to the touch, so it’s been there for some time. This worries me.

I wish I could say this is a rare occurrence for me. I wish I could say it happens every now and then if I’m rushed or exhausted or whatever. Because I know it happens to lots of people. My girl friends joke about it, reassuring me that it’s just a normal part of aging. But I don’t think that’s true. I think it happens more frequently to me than it ought to, and I have to be honest: That scares the S**T out of me.

I have multiple sclerosis, and anyone with multiple sclerosis understands that every teeny tiny symptom could be a start of a relapse, or it could be nothing. Fellow MSers understand that hovering cloud of doom, threatening to take over your body once and for all. I have the relapsing kind, for now, so if I do have a relapse I can hold on to the hope that it may not be permanent. I’ve had lots of symptoms that have popped up for a couple months and then gone away, never to reappear. But on the other hand, the damage to my nerves is always permanent and will always leave the potential for problems down the road. Take my vision for example. We’re calling that episode a relapse, but it left permanent damage that will affect me the rest of my life. I will always be visually impaired this side of heaven. I don’t struggle as much with it as I did in the beginning, because by God’s grace I’ve grown and adapted, but it’s always here as a reminder.

But memory loss? I don’t know, that one seems so much scarier to me. I mean, I can deal with losing physical functions. But losing my MIND?? I don’t know. I just don’t know. It just scares me, y’all, and that’s all I wanted to share really. That though I’ve been in the best physical shape of my life lately, feeling good and having no issues, at the end of the day I still have MS. It will always be a part of me. I just have to make sure that it knows who’s the boss around here.

Here’s an honest post

Not that my posts are never honest, just that this one is taking me a little bit of extra courage to post. I’ve got my big girl pants on here, folks.

I went to see my doctor yesterday to talk about anxiety. It’s something I’ve been struggling with for some time now, well over a year, only I’m just now realizing that’s what IT is. So I’m getting help.  And in case there was any shred of doubt in my mind that this was a real problem for me, I got worked up and nervous on the way to the doctor’s, worrying that we wouldn’t get there in time (with 50 minutes still yet to spare), and then the doctor’s office made me wait for a good 30 minutes. So I sat there, appearing completely calm, while my insides itched and twitched and crawled around. My heart was racing, my chest was getting so tight it was hard to breathe. When I describe all this to my doctor, and to friends who are familiar with anxiety, they nod in reassurance that it is a real problem and I’m not crazy.

These little anxiety attacks happen more frequently than they ought to. Very often, too often, they cause me to lash out in anger at my children. They don’t deserve that (usually lol). Also it’s just mentally exhausting to be walking around in an amped up state of mind, with your insides all twitchy and restless. Honestly, it didn’t bother me quite as much when I was fatigued. I’m not saying I want to go back to the land of fatigue, of course not, I’m just saying the anxiety wasn’t as evident. I didn’t really see it for what it was because I was blaming it on the fatigue and I could always just sleep it off. But no more. Now I am healthy and I’ve got energy to feel the things I’m feeling that need to be addressed. And now I’m addressing them. Lord, don’t leave me now. I still need You every day.

I’ve thought a lot about where this anxiety is coming from. Who knows, really, but I wonder if this is the residual effects of my vision and hearing loss. Now that I’ve reconnected with people and I’m in better physical health, maybe this is part of that grief and rehabilitation process. I certainly don’t like to give my disabilities more credit than they deserve, but it’s true that I live outside of my comfort zone almost 90% of the time. Nothing looks right, nothing sounds right. It’s all still very foreign to me. I have to believe that this won’t always be true. I have to believe that I’m going to find my new comfort zone. And when I do, believe me, I will move right in. I’ll decorate it with paisley, Wonder Woman, and maybe a cowbell or two. And all my favorite people will be invited!

 

We call this an ouchie wah-wah

So thanks to my poor vision, I guess, I ran head first into my daughter’s loft bed. Again. This time super duper hard. So I think I’m gonna have a major goose egg on my forehead by morning. We need to put up a sign that says in bold, high contrast colors, “DUCK!!” Which, coincidentally, rhymes with the word I would have said had my daughter not been right there to witness my stupidity.

Can we just start over now?

April Update

I am running a 5k next week. I haven’t been training for it. Occasionally I’ll get a run in, and I do fine. So I think I’ll do fine on race day. I won’t be breaking any records, but I’m confident I’ll finish on my feet. Which I guess is the most important thing to me. Just keep swimming.

This morning when my son went to pack his lunch, he found a gang of tiny ants in his lunch box. Eww. He freaked out, rightfully so I suppose, but he went a little overboard if you ask me. I mean, they weren’t biting ants, or even the flying kind. But still, what a mess. The kids managed to get out the door to the bus on time, while I did what I could to clean up before my ride came (dermatologist appointment today), but I’m sure there are still creepy crawlies hanging around here and there. I put his backpack in the garage because they were there too. This is per my son of course, because my vision, you know? They are too small for me to see, unless I know where to look. It didn’t help that his backpack is black, so the sneaky ants are camouflaged. 

Ugh. Then my ride came 15 minutes early, and I was still in my pajamas. But the driver was plenty patient, and everything was fine. The day could only go up from there, right?

And it did! The dermatologist seemed to know exactly what is going on with my face, and it turns out it’s not my fault! It broke out again when I was on the prednisonea couple months ago, and just won’t clear up. He said the prednisone was likely just a trigger for the underlying cause, which he believes to be rosacea. Stress is also a trigger, so I think I need less stress in my life. Anyone wanna take my kids for awhile? Or the dog? Or both? Anyway, the doctor called in a script for a cream, and I’ll go back in a few weeks to see if it’s helping. And he was a super nice doctor and didn’t make me feel crazy or neurotic, so I’m feeling better now. Amazing what a difference a kind interaction can do for your mood.

Now I have the whole day ahead of me, and with a positive outlook to boot. I’m thinking a nice cup of coffee and a good book are in my future today…

Surviving, and then some

Today I did better than simply surviving, and that felt good. Exceedingly good.

Depression is still an issue. I’m addressing it, one baby step at a time. Talking helps, and I have amazing family and friends who make that task not feel so impossible to do. Baking also helps. I love to bake. Cooking seems to help too, though I can’t say I love it the way I love baking. Still, it’s something. At least with the baking and cooking there’s always something to show for it. And something to share with others.

Though culinary therapy may work for now, I’m not sure if it will be sufficient. I am feeling a lot of ugly emotions, and I know it’s a part of the grief process. I’m feeling some anger and frustration and homesickness. Not much in my life is familiar anymore. Everything looks and sounds different than it used to, and that’s difficult. It’s been three and a half years since I lost my hearing and vision, and I feel homesick nearly all the time. I long to feel at home in my own skin. Someday it will come, I believe.

I don’t know why I’m feeling such strong emotions after all this time, but I suspect they’ve been there all along, waiting for things to settle down before rising to the surface for me to deal with. So I guess I’ve just reached a part of the grief process I’m not familiar with, and may need some professional help to work through it. We’ll see. For now, talking helps. And cookies. There’s always cookies.

One big whiny post

Um… This week is starting out kind of rough. First of all, my monthly infusion is due, which means the last batch in my system is running out, which means I’m fatigued. I don’t know why it does this to me, because it certainly doesn’t flood me with energy when I get the infusion, but there’s no denying it. And knowing it’s coming doesn’t make it any easier. It still sucks, every time. It’s disruptive and discouraging and a constant reminder that yes, I am still disabled. The fatigue is debilitating, and there’s not much I can do to fight it. This angers me.

Also, I’ve been feeling lately, and especially yesterday, that my vision has grown worse. It’s so subtle that it’s hard to say for sure, but yesterday I was absolutely sure that the fog in my field of vision has closed in a bit more. This angers me too, and scares the effing poop out of me. I fear losing all my vision, I fear not being able to see my family’s smiling faces or the sun rising in the morning. There are so many beautiful things to see in this world and I don’t want to miss out on seeing any of them. 

So we are working on getting in to see my Neuro Ophthalmologist, and in the meantime I am trying ro enjoy what I still have and holding fast to my faith in Christ. He brought me through my darkest times and I don’t expect him to leave anytime soon.

The problem with all this, of course, is that life around here doesn’t stop to cater to my issues. The people still need to eat, laundry still needs to be washed, and the dog still needs oodles of attention. Last night my daughter spent the evening puking her guts out, and I was happy to clean up after her. Because I’ve got a tough gut and I can’t see the puke anyway. They point to where it lands, I take care of it. Cuz I’m still the mom, after all. And I’m thankful to still be able to be here for my kids, even with MS.

Some days (nay, weeks) I just don’t have the energy to be cheery in spite of the mess. This is one of those weeks. And it’s only Tuesday! Pray for my survival, would you please?