Archive for the ‘ multiple sclerosis ’ Category

Pseudo-ble

“I have had a better hold on my symptoms for the last several months,” says the silver lining proudly. And for that I am proud, and I am grateful. Things started getting rougher right around Christmas, culminating in a full week of the kind of daily pseudo-exacerbations that really make one tickle the chin about needing the prefix “pseudo.”

air-stone-2The end of last week began seeing the escalation from moderate dizziness/clumsiness to the kind of fishtank-aerator-inside-the-body level of disability that brought me more than once to tears. Yesterday was less severe a day, so it gives me hope for today being a better grasp at baseline.

Monday I fell out of the chair at my PT’s office. Went to sit, ass off-center just enough to pivot the seat with my body towards the ground. My arms are still luckily quick to respond, and kept me from eating the trash can. I don’t know whether to be embarrassed or glad that there was a witness.

Despite the best efforts of Urogynecology, Pelvic Floor Physical Therapy, Myrbetriq, and even (physician-recommended) Dr. McGillicutty’s Wand for Female Hysterics, I am still sleeping poorly. My bladder wakes me up 3-6 times a night now — an improvement over 12+ times each night, but doesn’t address a now infamous inability to go back to sleep after stumbling across the hall. No matter how tired I am or how many bubbles are rocketing through my extremities.

But today is better than yesterday, and I netted 6 hours of sleep (in various lengths of time) last night. Despite a bad week, I worked with clients and even picked up a new one. I am trying to move away from carbs to vegetables again (it was cold and festive for a while, damnit). Tonight’s dinner was created with less difficulty, but all the love: broccoli soup from scratch for optimal cruciferous goodness.

That is why the house smells like farts. The soup. Really.

 

 

Sweet Lord, it’s Been a Minute

I suppose it’s a time-honored tradition — 12360130_10153881975963028_4719306674604972142_nfeeling like you’ve gotten a lot accomplished, then sitting down and realizing the messes around you still exist. There are gifts to wrap in a messy room where the tree’s not yet up. The dog suddenly has to go out. Then the cat wants in. It’s time to switch the laundry, too — but an hour in the kitchen doing dishes and making tonight’s dinner invariably leaves me weepingly dizzy. I would be proud that the chicken soup for tonight couldn’t be more lovingly home made, but instead I look around from a wobbling visual field at everything left yet to do. This happens every morning… I’m recognizing as a pattern that my late mornings and early afternoons are currently kept as the property of Desperation.

I also know this pattern can change any time without notice, or that “spells” might last longer, or occur at other times TBD.

But let’s not focus on the maudlin after so much time apart.

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Reading my 2 haiku at the premiere

I’m designing a great many book covers and picking up volunteer work where it appears (follow me on Twitter!). I’ve been writing hundreds of haiku, and had two published for Poetry on the Comet — a project headed by the city’s Poet Laureate to place poetry on city buses. It’s exciting to be writing poetry again; now I just need to pick up a pencil and make myself start drawing (not only do you lose it if you don’t use it, but I stopped doing a lot of things I loved and at which I seemed good when I lost the ability and admit to now being fearful of trying. God it feels good to say that out loud though.)

12196103_10153148064583038_400264783271040078_nI’m not only still walking without a cane, something amazing and unexpected happened! Walking had become a great deal easier, but only at a a slow-moderate pace. Notching up to a jog was the hard limit my legs would not seem to move past (so to speak). My feet would fail to understand the concept of lifting, then returning to the ground in the same direction once speed and accuracy came into play. A couple of weeks ago we were again walking the boardwalk at the Congaree National Park; my walking speed had increased, so I gave jogging another try. The jogging turned to running and I kept going until breathlessness got the better of me (about 1/8m because I am only so fit). But holy Jeepers — I don’t remember running since I was young enough not to be obese yet. So congratulations to me on this, but I know I need to keep doing it now that I know I can.

The bladder? Still a thing. Did you know that Urogynecology is an existing specialty? Did you know that when they’ve reached a crossroads in treatment, they can refer you to a pelvic floor physical therapist? Because 3j5z6that also exists. Though on medication for the frequency, I’ve still clocked 49 bathroom breaks on a 48-hour period; the physical therapist has gotten me from 25 to 15 breaks in a day. The power of Zen is strong with me — even moreso because I’m getting a bit more sleep than I have in years. I have had dreams again! Only two or three, but it’s enough to let me know that REM sleep isn’t a totally absent part of my night anymore.

And now that sitting and facing the same direction for an undetermined amount of time has let ebb the worst of the dizziness and motor skill loss, it’s time to fold the newly clean laundry. Then I’ll put it away and sit again, then I will get up and take out the trash and sit, then I’ll get up and do something else which will be unfailingly punctuated by more sitting and not turning my head.

I can run. I can dream. I got this.

More Thanks to Give

dude-you-smell-freshToday I didn’t use my cane. Today I didn’t need to use my cane. Today I actually didn’t even remember I needed it. I walked around the property with a yard crew, getting feedback on their progress and possible repairs — we’ve got a big yard, and though landscaping was once a fond hobby it’s not something I can really do like I used to. It was nice to look around at the improvements — in fact, I moved all the flower pots then swept the front porch and walkway. I went inside and baked brownies. I cleaned the bathroom, did some laundry. I washed the dishes and fixed dinner. I took a shower, sat down, looked up, saw Kanedinsky. It wasn’t until the end of daily activities that I realized how much better I moved today — and that I did everything without any assistance. I didn’t have a “spell” today. I don’t even remember the last time a day passed without one. I was able, therefore, to change directions more easily which aided a level of productivity rarely accessed. Tonight I will fall asleep thankful again. It’s a damn nice feeling.