I am new wine
Patiently aged
Broken pieces repaired
Fractures restored
Strength found
Scars healed
I am new wine
Searching for new vessels
To store this newfound freedom
Every discovery a gift
I am searching
But I am not lost
I am new wine
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Luke 5:36-38 NRSV: “He also told them a parable: ‘No one tears a piece from a new garment and sews it on an old garment; otherwise the new will be torn, and the piece from the new will not match the old. And no one puts new wine into old wineskins; otherwise the new wine will burst the skins and will be spilled, and the skins will be destroyed. But new wine must be put into fresh wineskins.”
Goals, and a bit of honesty
So. For the month of March I had attempted to go without sugar. The processed stuff of course; I did not abstain from eating fruit. Girl needs her fiber, you know? I made it 3 weeks, and here’s why. It really didn’t seem to make that big of a difference! I had been warned that I would go through a brief period of withdrawal, headaches, mood swings, etc. I had none of that. I expected to lose some weight. That didn’t happen either. My conclusion? Maybe I don’t really eat that much sugar. So after 3 weeks of this mild deprivation, I gave up the experiment. And again, nothing really changed. The only thing I really learned is to be more aware of what foods contain added sugars and how much. And I will continue to try and avoid those things as much as possible, but I don’t think I’ll go completely cold turkey again. I love donuts too much.

My new goal, for the month of April, is to complete some sort of exercise every single day. I’m 5 days in, and I’ve only missed one day, but I got right back on track the next day. This missed day was Friday. I just couldn’t will myself to do anything, I was so tired. However, upon reflection I realized the reason I was so tired was because on Thursday I went for a run during the day, and that night I went swing dancing and then to karaoke. So couple a late night with two forms of exercise, and I think I earned that pass for Friday. It’s my game, so I’m going to allow it. Moving on.

Today I ran two miles to the convenience store to buy myself a belated birthday donut (my birthday was in March, the no sugar month, which in hindsight was not very well thought out). While on the way I decided I would also buy donuts for my kids and then just walk the 2 miles back. I did not feel like running while holding a bag of donuts. So I completed 4 miles, half running, half walking. Decent workout. My legs will thank me tomorrow. And the kids were pleasantly surprised about the treats.

So, I need to be real honest here. I went most of the winter without much running. I didn’t do much strength training either. However, I have been slowly starting to get back to the gym for strength training, and I occasionally get out there for a run. Michigan has really been struggling to let spring in, because even when the temps are reasonable, the wind brings them right back down. One, I don’t like wind because my cochlear implants make it extremely loud and that’s just annoying. Two, it’s cold man!! Running helps my body warm up in most places, but my face and fingers and toes still end up chilled to the bone and it just makes me grumpy. It does not make for enjoyable running. Of course, I’m still grateful to be able to run but I seem to remember having more joy with it, and I can’t seem to find that yet. I need a race on my calendar to get excited about. I’m working on it. All my runs have been short, 2-3 miles, and that doesn’t really get me out of my neighborhood. I want to be free! I want to explore the trails! Get me away from the road, I want to run by some people walking their adorable dogs! I’m reminiscing my marathon training days, and longing for that feeling again. Not that I have plans to run another marathon anytime soon. A half, maybe. We’ll see. I definitely want to do more 5ks and 10ks, but only if they involve fun swag. I’ll never win these races, and I can run at home for free, so good swag is a must for me.
So yeah, goals. Limiting sugar and exercising regularly are two things I’ve really been working at to keep myself as healthy as possible. It’s what I’ve gotta do to fight disease progression, and I think it’s going pretty well. Most days I feel pretty good. I still tire super quickly and take a long time to recover, but at least I’m having those moments where I’m able to be more present with the people I love. These are good things. While I’ll never say I’m thankful to have M.S., I’m always grateful for what I’ve learned from the challenges it throws at me every day.
Dipping my toe back in
I don’t know if anyone has noticed, but I haven’t really been blogging much lately. Lots of reasons for that, most I’ll keep to myself. But today I was jotting down some thoughts I had while folding laundry. I sometimes think my best writing comes like this, before I ever sit down to write. Since these were thoughts regarding my experience living with multiple sclerosis, I thought it would be appropriate to share here.
My expectations of myself are still, even after almost 16 hours, of someone I used to be. I expect to be able to complete activities with the same energy and stamina of someone who does not have MS. I am still hung up, and low key furious, if I’m being honest, about not being able to do “all the things.” And then I have a bad fatigue week, like last week, and I’m slamming drawers and throwing dishes because I’m angry that I can’t move my legs like a normal person. Like my former person. I *want* to do all the things. I desire to complete tasks so I make lists, I plan. But then, I collapse because just the planning of all the things has exhausted me. Dammit. And then I am overwhelmed by the enormity of it all. It’s so big, in comparison to my capabilities. But then I remind myself that the only way to eat an elephant is one bite at a time. And I ask for help. I pray to the Lord for guidance, for rest, for strength. I ask Him to give me some grace and patience for the moments. Wash, rinse, repeat.
It’s fine. I’m fine. Everything is fine. I remind myself that everything I do, all day every day, takes significantly more effort than it used to. Mostly this is because of my vision loss, which if I had to rate, is my very least favorite disabling feature. It is so difficult to see and I’m trying so effing hard. The striving is utterly exhausting. I’m done with it. Done, I tell you! Done!
A Gelatinous Haiku
Like walk through Jell-o.
Running and fatigue don’t mix.
Try again next day.
Pet peeves
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.
Hormonal Haiku
Legs ache from the cold.
Yet my armpits are sweating.
Perimenopause!
Haiku for the masses
Social media
Facade for relationships
Choose real connection
A Winter Haiku
Damn you Michigan
Frigid temps make my legs ache
Come quickly spring sun
A tinnitus haiku
When I wake, silence
All I hear is rushing wind
It’s all in my head
Moving Forward
It’s day three of this debilitating fatigue, and I’ve been managing okay. I’m doing the bare minimum, the most essential tasks. It is strange timing, because my monthly infusion was last Friday. My energy levels should be going up, not down. There’s a little bit of hope on the horizon however. I talked to my therapist yesterday and I think we uncovered some of the factors that could be contributing to this.
Factor #1: we are having a string of below freezing temperatures here in Michigan. I’m wearing multiple layers in the house just to stay comfortable, but I think it still zaps me of energy.
Factor #2: I’ve not been running or otherwise exercising regularly for awhile. That was intentional, after I declared it hibernation season for myself.
Factor #3: I wasn’t taking my medicine and vitamins over the Christmas break. I had no routine so I had just sort of forgotten about it. None of these meds are super crucial, and I often miss a day here and there with no issue. But a whole two weeks or more? I guess it caught up to me. So I’m back on that wagon as of yesterday, and hopefully my energy comes back to functional levels. One of the prescriptions I take is Vitamin D2, which is super important for us with MS, and especially during these winter months when sunlight is in short supply, So it was a rookie move for me to not be taking that. Slap on the wrist, won’t let it happen again. Moving on!
I got some good news recently, and that’s that I was approved for O&M training through the State of Michigan. Orientation and mobility training is something I didn’t know much about until I started looking more into using a white cane in public and unfamiliar environments. Because as I may have mentioned before, in new spaces I get *super* freaked out not being able to see and recognize what’s around me. I get so fearful it’s like my physical and mental world just shrink so that I’m in this invisible bubble. I walk slowly, staring at the ground, looking up every few steps to study my immediate surroundings. It’s a very lonely feeling. I hide it well, I think, but I got tired of feeling that anxiety. Even worse, I think I avoid going out in the world in order to avoid it, and I’m tired of that too. So after meeting with a coordinator from the State I am really hopeful that this program can help me. I think I’ve become so accustomed to the struggle, and I’m looking forward to learning how I can manage better and feel more confident out in public. Yay for me being my own advocate, right? This was a very difficult decision to make, to be sure.
That is all for now, folks. I do have some book reports rolling around in my head that I hope to get hammered out in the next couple of days (weeks?) but we’ll see. Until then, stay warm my friends.