Category Archives: Disability

Learning life without fatigue

I am still really super happy to be rid of fatigue. I don’t think that will ever get old. Not having fatigue feels a lot like someone just handed me my life back. Now I’m just figuring out what to do with it. I have all this energy during the day and I get feeling restless. But when I’m feeling restless it’s still hard to think of what I should or could be doing. I don’t really want to blame my brain for not cooperating, but it is what it is.

I recently decided I want to be more intentional about how I use my time throughout the day. “Going with the flow” is okay every once in awhile but I’m not real comfortable staying there. I want to be serious about keeping up with housework, but still give myself time to rest when needed (not to mention recognize when the rest is needed). My solution? I downloaded an app on my phone – because there is ALWAYS an app for that. It’s been helping me keep track of all my daily tasks, occasional to-dos, and ongoing habits I’m trying to form. Spending time with God, playing fetch with the dog, cleaning house – these are all things I want to be doing every day. The app awards me points every time I complete something, so I’ve added things like taking my medicine, doing the dishes, taking out the trash, vacuuming, and cleaning the bathrooms. It’s made doing stuff kind of a game, and I’m already on level 4! I haven’t quite figured out what I can do in the “game” at level 4 but I don’t really care because apparently I’m a simple girl and I’m happy enough moving up the level ladder.

I’d write more, figure out a way to cleanly close this post, but my tummy is growling at me so I’m off to the kitchen! Have a happy Friday y’all!

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Winner, winner

Okay, so one of the things I had been struggling with is the fact that I can’t really share meals with my family the way I used to. I come from an extended family full of food lovers, and we do our bonding and make our best memories over a meal. So not sharing evening meals with my own immediate family was affecting me more than I had anticipated.

I don’t expect them to eat what I eat, and I don’t even have the desire to try to convince them to. I know it would be a futile effort. It’s certainly not something I came into overnight, so I couldn’t expect that of them. I did come up with an idea however, and that was to serve one fully vegan meal per week, one they would be most likely to enjoy. I ran the idea past them a few nights ago and while the kids were immediately against it, my husband was on board. That alone surprised me, but then he went a step further and told the kids he thought that since I do so much for them and I make compromises all the time, that they should be willing to do this for me. And then they all agreed, and I was in heaven. It was so nice to have their support in this. Not to mention, I fell in love with my husband all over again, for stepping up like that.

Anyhoo… ever since, I’ve been trying to find some easy vegan recipes that aren’t too off the wall for them, and I’m coming up rather short so far. Because they are mostly super picky eaters. I only plan to do one meal a week, so I’m not terribly worried. I’m sure between Pinterest and a good old fashioned Google search I’ll find plenty.

Tonight was the first night we tried an an all vegan meal. In order to ease them into this, and to show that I’m not just trying to introduce them to a bunch of foreign foods (think seitan and tempeh), I served waffles with strawberries and whipped cream, with fresh red grapes on the side. Waffles made with almond milk and egg replacer, and coconut whipped cream. They loved it, and we all agreed that it was delicious! I had never had the coconut whipped cream before, and I dare say it tastes better than the dairy version. Winner, winner, vegan dinner.

Oh, and also today I had a visual field test at my neuro-ophthalmologist’s office and it turns out my eyes have both improved! I can now see 51% with my left eye and a whopping 27% with my right.

It’s safe to say that today was a really good day. Tomorrow is infusion day, so I’ll get to relax in their new heated seats and sip coffee and read a book. I’m livin’ a glamorous life, folks. Envy me. I dare you.

Brain Dump

What’s on my mind, you ask? (If you didn’t, feel free to move along…) Food. Coffee. Food again. Running. Writing. A cool breeze on the back deck, birds chirping.

Yesterday I signed up for a 5k that happens in six weeks. With the exception of this morning, I had not run since before school let out for the summer, on account of my knee and hip pain (see dumb butt post). I know I can walk a 5k, no problem, but my goal is to run it the entire way. So I’ve got some work to do to get back to that place.

Side note: the cool breeze is upgrading to a brisk wind. I may have to go inside 😦

The summer is over. There were a couple trips there at the end I haven’t blogged about, but I may yet. Late is still better than never, isn’t it?

School started for my kids on Monday. It was a half day, and they don’t have school on Friday due to Labor Day, so it’s what I would call a “soft opening” to the school year. The kids are thankful for that, but I would have been right on board with jumping right in with a full week. I like my weekdays. I can do my own thing and not have to worry about what the kids are going to do. It’s one of the luxuries of disability that I’ve become accustomed to.

You know what I’m excited about today? You’re gonna laugh, or groan, or both, but I’m really excited to eat macaroni and cheese for lunch. I stopped eating dairy and eggs in June, and it’s been so much harder than giving up meat (that was last November). I’ve since learned to drink my coffee black, and found some really great non-dairy milks, yogurts, and ice creams, but had yet to find a suitable replacement for cheese. At least not any that you would buy pre-made. My cousin told me awhile back about cashew cheese that’s easy to make but I just hadn’t gotten around to trying it. Well, I ordered the necessary ingredients a few weeks ago on Amazon (easier than trying to find nutritional yeast and tapioca starch locally) and finally made a batch on Tuesday. I’ve been putting it on burritos, tacos, pizza even, and it’s surprisingly delicious! So I have a box of macaroni noodles just waiting to be dressed up with this stuff, and I believe today will be the day.

My daughter started taking ballet lessons last week. She’s been wanting to for years (she’s only 7) but I just kept putting it off because it’s way out of my comfort zone. But I finally worked up the courage to get it going, and I’m so glad I did. The smile on her face when we walked into the dance shop to buy her ballet slippers was priceless. I had not seen her light up like that in a really long time. Maybe ever. And she’s loving the practices, and looks forward to it every week. I’m really excited to see how this goes.

My son, the big sports guy, is taking a break from competitive sports for the fall. He’s going to take swim lessons at the YMCA, to learn to be a better swimmer. Then when wrestling season rolls around, he’ll be back at it. The kid has so much energy we need to keep him busy or he’ll drive us both nuts.

I chopped 8 inches off my hair back in July and I am loving it. I actually think I want to go a leeeetle bit shorter. Just a little. And highlights. The highlights are happening next week, for sure. We’ll see if I end up with just a trim, or if I decide to cut it shorter.

Oh! And did I mention I get my groceries delivered now? Oh yes, I’ve been anxiously waiting for that service to come to our area and I’ll tell you it’s even better than I had anticipated. It is saving us (me) SO MUCH stress. I don’t have to plan our meals or grocery trips around my husband’s schedule. I need stuff, I just order it online and it comes right to the house. Just like magic.

You can say things are going well. I’ve left out a lot, believe it or not, but that’s enough for today. Until next time…

Hot Mess

85 degree summer heat.

Baseball tournament.

M.S.

Tingly hands debut.

Nerve pain.

Broken A/C freak out.

Sunburn won’t let me cool down.

Feeling helpless.

How does this not bother everyone else the way it does me?

What is wrong with me?

Oh yeah…. M.S.

Crying in the shower, snot running down the drain.

A good night’s sleep tried to help.

Literally dragged my foot to the bathroom the next morning (I did say “tried”).

I sat and waited in the physical therapy office for a half hour before checking in with the receptionist to see what the hold-up was. She was quite obviously unaware of the time of day, and had forgotten to let the therapist know I had arrived. It goes on from there, my bad luck, but I’m tired of hashing it out, those dumb details, so I’ll attempt brevity. I missed my ride, they tried to get me a new one, but I took a ride from a friend instead. Because I didn’t want to risk unleashing my emotions on a complete stranger. I came really close to doing that already at the therapist’s office, after discovering I had missed my originally scheduled ride. My husband reassured me that this was just a minor bump in the road, which I should have already known of course, but he knew I needed to hear it (He still amazes me, coming up with the right thing to say).

This was not my typical Monday. I don’t usually have to be anywhere, or talk to anyone but my family. So it was hard to do in the wake of a rough-on-me weekend. I just didn’t have the tools necessary to cope with minor hiccups like delayed appointments and missed rides. I spouted my frustration on Facebook and received lots of encouragement in return, but I felt a little shameful doing it. Because I like to be the positive one. I guess today I just decided it wasn’t worth the effort. Because it was going to take a lot of effort.

But those positive words helped, and the ride from a friend, and then a good nap in my own bed (with working air conditioning!). The kids were with grandpa for most of the day so my only interruption was the dog barking at who knows what. It was nice. And then I grabbed a beer, turned on some Led Zeppelin, and started chopping vegetables for dinner. I managed to relax. Truly relax.

I have more doctors to see this week and then I start some physical therapy next week. I’d bore you with the physical therapy details if I could remember them. So you’re in luck, cuz I have a terrible memory.

Peace out, readers. I hope you take some time this week to relax. Really, truly relax. It can only do you good.

 

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?

Matilda’s Gone

Funny story – Back when I was working I set up a dummy account with my actual email for testing a new web portal. That was over three years ago. Just this evening I received an email from the company urging me to engage them to have my tax returns prepared, only it was addressed to my alter ego… Matilda Redmond.
First it gave me a chuckle, and then it brought back some memories I had left in the past, where they belong. The job I had when I lost my hearing was a really stressful job. I’ll admit now that I hated it. I missed my coworkers when I was forced to go on disability, but I didn’t miss the stress of the job. I had nightmares for almost a year following my departure. However, with the passage of time and the progress of my recovery, I no longer have those nightmares. And I do sometimes miss aspects of the work I was doing – the accounting portion – and wonder if some day I’ll be able to do any of it again.
For now I’m content balancing our checkbook on an insanely regular basis, and managing our family budget. Also, after receiving that email addressed to Matilda, here’s to hoping the nightmares don’t start up again tonight!