Sometimes I’m really proud of myself for being able to keep the rhythm of breathing going, such is the joy of MS fatigue.
In my last post I said I would try to write something about my MS, so here it is. Whew, this summer has been a challenge! I have had a smattering of a few good days here and there and even a few strung together in sequence, but more often than not I’ve been under the thumb of pervasive, domineering MS lethargy. Nope, it’s not the kind of tired that needs a nap and sitting to rest for a spell doesn’t shift it at all. Like having a bone dry fuel tank, no matter how hard you try to go, you end up getting absolutely nowhere. The engine won’t start, the wheels won’t go anywhere, the brakes won’t compress, the electric windows won’t budge… technically it’s a car, but it’s good for nothing. I still look like Amy on the outside but there’s no juice to animate me. The electrical wires of my nerves are stripped and the signals my brain tries to send to make my body move either can’t or only partially get through. As a result, I don’t walk right, my hands don’t work the way they’re supposed to, my bladder doesn’t know if it’s holding or letting go, my thoughts struggle to be strung into words, and my balance is all over the place making me stagger around like I’m drunk. Normal things like showering, getting dressed, eating, and even sitting up use inordinate amounts of energy because my nervous system is having to work 1,000 times harder than yours just to get the signals through. Some days, for some inexplicable reason, I spontaneously recharge fairly quickly and I get to do things other than basic human functions – these are my good days. Other days, most days if I’m honest, time passes from my favorite chair or lying in bed. I read, listen to audiobooks, put puzzles together on an app, watch TV, and snuggle with our cats.
MS and heat don’t mix, it makes all symptoms worsen, so I haven’t been on the patio taking pictures much the past few weeks. However, the past couple of days have been milder allowing me to snap a few pics of my feathered friends.
It’s been a month of MS fatigue and quiet living. I’ve ridden my scooter a few times to the lake in our neighborhood and enjoyed the dragonflies and flowers always present. Here are a few of my favorites.
One of these days I’ll write more. God be with you! ❤️, Amy
Have you ever done something that you look back on a bit further down the road and wonder just how you could have been so oblivious? Well, I’m there. I shot straight up at 4:38 this morning and thought, “Copyright! I’ve broken copyright to Merrill C. Tenney’s The Genius of the Gospels“! I was going to post the notes I took on John today, but instead I took down my previous posts on the first three Gospels. Perhaps you were quicker on the uptake than I was. All I can say is I’m really sorry. It was such a good study, I got carried away and shared before thinking things through all the way.
So, back to the regularly scheduled programming…
My nephew came and stayed with us for a while last month. He made his Aunt very happy when he took my camera and, with his artistic eye, took pictures like a pro. Just look at his gallery!
Pretty impressive, eh?!
Here’s the young man himself.
The weather has been somewhat mild for our area this time of year so I’ve been able to get outside and take a few snaps. Heat and MS don’t mix so summer photo sessions are usually few and far between.
All my best to you and may God be with you! ❤️, Amy
It was 70*F this afternoon! I decided to lie on the grass and watch the clouds pass between the budding limbs of our river birch and the neighbor’s trees. The warm rays felt so good, I felt winter melting away!
The birds are getting used to me being outside again and have been coming closer. I wish I could describe the glorious yellow of the goldfinches sitting in the trees and visiting the feeders. I can’t stop taking photos of them. Their color reminds me of rich, farm fresh, creamy butter.
Not to be outdone, the cardinals have been showy and coming to the yard a lot. It’s incredible that one bird can have so many shades of red. Some of their breast feathers seem shimmery, as if tipped with frost when the sun hits them just right.
Since taking up photography two years ago, I have tried to get a good picture of a carolina chickadee. Somehow their glimmering black eyes always manage to get lost and blend in with the strip of black feathers on their heads. Well, today I found success! I’m right well pleased with this picture.
Trees, shrubs, and flowers are coming alive and it won’t be long until hubby can add a bit of landscaping to the backyard. I can’t wait to get some flowers planted that will attract not only birds but butterflies too.
Thanks for stopping by. May God be with you. ❤️, Amy
WARNING: The following is an extremely exaggerated, fanciful description of a much less exciting story. No one was injured in the actual exploit. Names are not used to protect the identity of those involved.
She opened the top drawer of her cabinet and paused thoughtfully. She ran her fingers over the neatly aligned collection of scissors of various sizes, thicknesses, brands, and purposes. Nothing there seemed quite right. Suddenly, I saw the flash of inspiration turn her usually dull, milky-garnet eyes into lustrous gems. She quickly closed the drawer, bent down, reached under the cabinet, and pulled out a large plastic case. I heard the release of two clasps as she opened it on the ground directly behind me. Strangely, I noticed a faint whiff of gasoline mix with the scent of hairspray, botanical shampoos, and foamy mousses.
With absolutely no warning and the simultaneous feeling of fight or flight that only true terror can create, the whine of a two-stroke, single engine weed eater filled the retail space. The din reverberated off the mirrors, tiled floor, and rows of adjustable metal chairs. A deafening “thunk-tunk, thunk-tunk, thunk-tunk” whirred into life and ramped up into a high pitched scream just over my right shoulder. It swiftly came closer until I felt the very hair on my neck begin to move. I could tell the length of trimmer string was too long and was flicking past the protective case, like the tongue of a cobra tasting the air. Instinctively, I pulled away from the droning sound and was nearly out of the chair when I heard the stylist’s voice filtering somewhere through the bedlam. “Don’t worry, I know what I’m doing. I’ve done this hundreds of times and you’re going to love it!”.
Was she like a chainsaw artist and could sculpt ordinary hair into a beautiful pixie cut with this outrageously deadly tool? After all, I’d shown her a picture of what I wanted. Wasn’t that her license hanging right in front of me on the mirror saying she knew what she was doing?
It’s strange how much faith we put in a little slip of paper with an embossed seal. It gave me the courage to sit back down. As I felt the first chunk of hair whacked off, I squeezed my eyes as tightly as I could and hoped for the best. Thirty minutes passed and I was still alive when she told me she was done.
Because it was a really tired MS day and I didn’t want to be out any longer than absolutely necessary, I got a wet cut without having her blow out my hair and style it. I don’t know if she was trying to cover up the mess, but she showed the back of my hair to me through a small hand mirror. The little bit I saw looked pretty short but okay.
When I was about 10 years old I remember my Mom telling the stylist to cut my uber thick, long, blonde hair into something more manageable. Somehow the lady translated that into a female mullet. I cried uncontrollably until Mom took me back an hour later and had the stylist rid all traces of Liza Minnelli from my head. I haven’t felt like crying about my hair for 40 years. I tell that story because this is what I saw when I got a closer, fuller view in the mirror at home…
Obviously, I couldn’t leave it like that and I certainly wasn’t going to go back and let her take another whack at it (😜😂). Though I’ve trimmed up my own hair before, this was way beyond my skills. Besides, it’s hard to see what you’re doing through misty eyes. So, I ended up going to my Hubby’s barber. Though I had to wait my turn for two hours, he was able to get me in on the same day as the disast-hair and, well, see for yourself…
Ahh, much better! Hey, local friends, do you have any recommendations for a good stylist who can handle short hair?
Photos from the last few weeks.
We have had some beautiful birds at the feeders this week. These are a few of my favorites.
I had a moderate amount of energy on Monday so I decided to squander it by going to the lake near our house. (And I do mean squander. I’m still recovering 😒.) Though it was still a bit cold, the sun was shining and it felt good to sit in it by the edge of the water. The lake was still frozen over but the ducks and geese didn’t seem to care.
I’ve been practicing using portrait mode with my camera this week. It’s impossible to take a bad picture of these two beauties 😻!
I get the next dose of Ocrevus for my MS on Monday of this coming week. I have to wait three months after I get the infusion, but then I will FINALLY be able to get a Covid vaccine, Lord willing. I wish you health and happiness! ❤️, Amy
This weekend, from the comfort of our own living room, I joined bird enthusiasts from around the world to count species and track their populations in a group effort sponsored by The Audubon Society and led by The Cornell Lab. The app “eBird” made it easy-peasy as I watched birds come to our backyard feeders. There was a cool global map that lit up in real time as people from around the world turned in their lists. The most flashes were in North America, Europe, and Asia during the times I looked, but I saw some from Australia and South America too. I kept data from Friday through today, Monday. I saw the most birds Sunday with 15 different varieties and a total count of 42 individuals in about 45 minutes. I imagine the freezing temps and constant snow made for a larger than normal number of birds at our feeders. You can see a bit of the progression of the storm in the pictures below.
I plan to continue to keep track of the birds that visit us using the eBird app, it was fun. And, you know I will be taking more bird pics soon! Thanks for stopping by! ❤️Amy
I don’t like “doctor day”. I have one with my neurologist every six months, at least. I had one today. Although she is the best doctor I have ever had, has seen me through some really rough MS transition periods, and I like her as a person, I dread going to see her. Though I live with MS and all the limitations it enforces daily, seeing a doctor specifically for the disease always brings the horribleness of it to the fore.
Firstly, I drove myself to the appointment, which required two days of vigilant rest in order to scrape enough energy together to do so safely. I got home completely drained and, six hours later, I’m still sitting in the recliner exhausted.
My walking is worse so I get to go to physical therapy…again. I’ve had P.T. several times over the last 30 years – something else to drive to. It’s worth a shot though if they can help fix the hitch in my “get along”, causing pain in my hips and spasms in my legs. I know I need to work on my balance and coordination, as well.
We discussed my bladder and the medicine change the urologist suggested – it’s always fun to talk about your bladder. She said she wished there was something to do for the interminable, insufferable MS fatigue but it’s just part of it. And, despite my trouble walking and the need for a cane, she said I’m lucky to still be able to walk after 30 years. She said it’s likely due to the fact that I have dauntlessly exercised in some form or fashion nearly every day for the duration of my diagnosis. Nearly all her other patients have moved to motorized wheelchairs this late in the game.
I’m going to get my next Ocrevus infusion the first of March, Lord willing. My doctor told me to continue to stay away from people from now until four weeks after I get the medicine, after which it should be safe to get the Covid vaccine (if I can find one available). As an aside, there was a lot of initial concern over whether Covid vaccines would be safe for people taking immunosuppressant MS drugs. Thankfully, it has been deemed safe and, though they may blunt the full effect, they still seem to work their magic.
Seeing my neurologist is a reminder of all the fear and uncertainty that surrounds the future living with multiple sclerosis. I wake up every day wondering what kind of day it will be. Will I be able to walk? Am I going to have enough energy to make lunch and dinner? I try to take it one day at a time, and I usually succeed. However, when I see the doctor I have to look back over the last six months or year and compare how I am now to how I was then. The last several years, as the disease has slowly progressed, I see changes that are not pleasant to look at but over which I have no control.
No one knows what the future holds, I know that. It may or may not be as bad as I fear it could be. I pray for a cure. Realistically, I think they will have to figure out what causes it in the first place before there’s a cure. It’s hard to win against an unknown, moving target. So much more is known now than ever before and there are some solid theories about what triggers the onset and drives the progression of MS. I hope I live to see the day when no one else dreads “doctor day” because of multiple sclerosis.
I’ve got a case of The Blahs, not to be confused with The Blues – which I don’t have.
MS has been busy fatiguing me of late without allowing me to pursue much sewing or exploring around to enjoy photo taking. The weather has turned cooler so most of my bird watching has been through the windows instead of on the back patio. I did get a few snaps with my phone of the cats doing cute things. Well, they’re cute to me, anyway.
After a long 35 year battle with breast cancer, my stepmother passed away a couple of weeks ago. She had suffered so much that it was a blessing to know her pain was over and she had gone to her heavenly reward. Of course, my sister and her family came up from Texas for a few days in two consecutive weeks. They got to say “goodbye” the first week and were here for the funeral later the following week.
I’ve been putting a lot of puzzles together while listening to Charles Dickens novels. So far, Bleak House and A Tale of Two Cities (both of which made me cry) have been my favorites. I just finished Great Expectations and am only three hours (out of 23) into The Old Curiosity Shop. I have A Christmas Carol, Nicholas Nickleby, and The Pickwick Papers waiting in the wings. I’ve read some of these before but am enjoying how they sound as audiobooks with wonderful readers speaking life into the characters as they do all the different voices.
(American) Thanksgiving will be a much smaller affair than usual but we’re looking forward to seeing my Dad and my step-sister’s family. In the true spirit of the holiday, they are each bring a couple of dishes while hubby and I do the rest. Despite all the troubles in the world around us, we have so many blessings for which to give thanks. I hope you find many blessings to be thankful for too.