My favorite tales

I sometimes forget that multiple sclerosis is a serious disease. And that things like the daily wearing of disposable underwear and typing with my left (non-dominant) hand were hard and demoralizing at first. They only became standard for me after I learned the new way I could do them. 
 
Once when I was feeling really sorry for myself I watched the movie The Bone Collector. I became enamored with the lead character who was completely paralyzed and bed-ridden, but discovered the he could still work as a detective. 
 
He found he needed a team to do his legwork, but that his brain was as sharp or maybe even sharper than ever (and did I mention that he’s played by Denzel Washington? Yummy!).
 
Additionally, every day he has to convince himself not to kill himself. Well really, that would’ve entailed convincing someone else to kill him or help him kill himself, which is probably illegal in his state.
 
Read the book
 
I bought the book and re-read the story. I wondered about the author and how he came to the story. What made him think of it? I don’t want to kill myself but it does make me think of the emotional battles I do often fight. 
 
It doesn’t comfort me to know that doctors now consider chronic depression, which is exponentially more common in MSers than in the general population, to actually be a symptom of our disease, a bug in our brain chemistry.
 
As an aside, one of my friends recently “exercised her right to die” in Oregon. She basically just stopped eating and drinking, and passed away peacefully several days later. So really if he wanted to really do it without help, he could have. But I digress…
 
Watched TV show
 
It has now been made into a weekly TV show. It shows on Friday nights which is, I think, a pretty dead time slot for television. It reflects the wishy-washy confidence of the network I guess.
 
I became fascinated with the workarounds that he found for himself. And in the end I thought if he can do it I can do it.
 
It was the first in my fascination with people who overcome or persist in spite of their disability. I collect the stories now, and revisit them when I’m blue. It reminds me that I have successfully persisted quite a bit!
 
What I’ve learned this week

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My MS in September

I used to love buying new school supplies even after I graduated. Like paper for the printer and pens and notebooks for a new journal. And colorful folders and sharpies and glue and glitter. Ah school supplies! 
 
Anyway, enough of my reverie. Back to the post at hand. I usually have a set routine in the morning that goes kinda by the wayside during the summer, and especially now because I’m between jobs; I’ve kind of let it lapse.
 
But now it’s September and back to routine so I thought I would share my morning routine with you:
  1. I wake up in the morning, wiggle my toes and put my knees to my chest and rock side-to-side a little bit.
  2. I sit up and hang my legs over the side. I bend over, touch my toes, then back up a few times just to get the blood kind of going.
  3. I turn off the white noise machine next to my bed and turn on the light there which I leave on for the rest of the day
  4. From the drawer next to me I retrieve the pill container where I keep a weekly supply of pill doses (I take stuff twice a day). I swallow my Gilenya and a few other meds and supplements in the morning using the waterbottle that I keep on my nightstand and refill as needed.
  5. Then I scoot the wheelchair over to the side of the bed and maneuver myself into it 
If the bed is dry I will just pull the covers up and smooth the duvet cover over everything. This is how I make my bed now. Otherwise I will remove the “chux” (see below!) to handwash in the sink, then make up the bed.
 
I now sleep with chux which are (these https://www.parentgiving.com/shop/reusable-underpads-30/c/ ) reusable bed pads for when I leak during the night. 
 
This is the sexy reality of my life: I have a leaky bladder (this is what we are currently calling incontinence? Uh, OK…) It is the bane of my existence and the most embarrassing symptom I have right now.
 
I roll myself to the bathroom and do my morning ablutions. If I have items to handwash, I start a sink full of warm water and good smelling, no-rinse Soak then throw them in.
 
Finally I eat something green before even having coffee (i’m keeping a bowl of frozen peas mixed with nuts, dried cranberries, and a few chocolate chips, moistened with salad dressing and eat a few spoonfuls while the water is heating), then have oatmeal with walnuts before anything else.
 
I only have 1 cup of coffee (have I mentioned my leaky bladder?), then have tea, cocoa, bouillon, cider or just plain water the rest of the day. 
 
Eating something green first thing in the morning is the most recent habit I have added to my routine. It’s my concession to The Wahl’s Protocol. Next I want to add some regular daily meditating somewhere in there!
 
Things I’ve learned this week
  • Reusable bed pads are called chux.
  • It’s okay, may be preferable, to eat apple seeds, so core and all.
  • The Bletchley Circle (BBC TV series) only ran for two seasons from 2012-2014 but the concept was apparently tried in the US with The Bletchley Circle: San Francisco in 2018.
  • Waterpik Water Flosser replacement tips should be replaced every six months, and if you buy one at a garage sale you should replace the existing one immediately! (Also you can download a user manual at the company’s website.)
  • Most peppers are not overly spicy but the ones with the black seeds are hot! Use gloves when removing the seeds and don’t rub your eyes!

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My bladder vs. the diet test

I keep thinking I can "cheat" sometimes with my food sensitivities, like you sometimes do when you are following a diet to lose weight.  But I had another reminder that one, the diet is helping, and two, I can't cheat.  Sigh.

A few weeks ago I had a major bladder issue again, which I haven't had in months.  I was discouraged because I thought the progress with my bladder was therefore not due to the diet, like I thought, but simply just my m.s. remitting and now relapsing according to the whims of the disease.  And that all this restricting foods was for naught.

I talked to OH about it and had a little cry.  Then suddenly I remembered that I had succumbed to the temptation of ice cream the night before.  Ah-ha!  Maybe that was why.

It was chocolate brownie ice cream, and of that, I'm sensitive to chocolate, sugar, cream and wheat (do brownies have wheat?).  I continued to have bladder urgency for over a week after that, but it was worst that first day.  And I'm back to having none now.

So the moral of the story is "Don't quit now!"

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Ah, cheese is back!

On my way to acupuncture yesterday I stopped and had my food sensitivities rechecked.  I am so happy to report that some of the things I've eliminated I'm no longer showing as sensitive to!

Some of the things I've really missed and can now eat again (in rotation every 4 days or so) are salt, Mozzarella cheese (on spelt pizza crust!!!), rice and corn, tuna and avocado.  I am looking forward also to cottage and cream cheeses.

Still no wheat, eggs or chicken.  Surprisingly no sweet potatoes, curry, turkey, and now canola oil!  Safflower and olive oil are okay now.

I can have sole, black coffee and barley (in my coffee substitute) sparingly.  So rotation, rotation, rotation.

My bladder urgency is mostly gone and others have commented that my energy seems up.  It's hard to tell, day to day, when changes are so miniscule, so other peoples' comments are so appreciated.  I wish I had drastic changes to report, but am cautiously optimistic that this experiment is useful.

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Eggplant

I have not been able to go back and get my food sensitivities checked again.  I still am not driving myself and OH continues to be sick: he is still recovering from surgery and most recently contracted a cold that has dragged on for weeks, resulting in nausea and fatigue.  So I am just trying to pay attention to minute variations in my health after eating something 'new'.

As OH likes to point out when we are trying to figure out what to eat, I don't like vegetables and thus am very picky about the way they are prepared.  So when I suggested baba ghanoush (pureed eggplant dip) and flat bread for guests, he was willing to make and try it.  I was a little discouraged by how it tasted without salt (unfortunately that's a common reaction for me) but he said it tasted great.

However, later both he and another guest had major bowel distress.  He attributed it to the chopped, raw garlic the recipe I found had called for. I didn't experience that, but did experience some bladder urgency which I hadn't had for awhile and awoke the next morning feeling weak and very fuzzy which I'm going to assume is my reaction to eggplant.

So I'm assuming eggplant is a "no".

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Anti-coffee

I am still maintaining dietary restrictions from my food sensitivities.  This has been really hard on OH, who cooks a lot of my meals, and a testament to how much he has been trying.  And one thing that I've noticed is that my bladder situation has gotten much better. 

My initial reaction, before being tested, was that coffee with its infamous diuretic properties was increasing my urgency to go.  But having something warm in the a.m. was so comforting that I just tried to time having a cup more than an hour before I had to get in my car and commute into work.

After I was tested I learned that I shouldn't be drinking coffee, tea or cocoa at all, so I started trying coffee alternatives such as Teeccino®.  I started to notice that the urgency was gone, but at the time I was wary about the benefits of the diet versus just normal remitting inherent to my disease.

But I gradually started drinking coffee again because OH would make a fresh pot in the a.m., which smelled so good, and it was just easier to pour a cup and head back to my computer working at home.  To my delight, the urgency did not return and I began to take this to mean that avoiding something was helping.

The final proof was that I had some wheat inadvertently in some store-bought meatballs.  The next day the urgency was back, so I examined the ingredients on the label.  Sure enough: wheat.

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The incontinence spectrum

In the interest of full disclosure of what it’s like to be a person living with this disease, I have to confess my biggest shame: urinary incontinence. 

The incontinence spectrumWedding is in TEN days! 

And now, in the interest of full disclosure of what it's like to be a person living with this disease, I have to confess my biggest shame: urinary incontinence. 

I know that it's a common problem with M.S. but my mom was asking me about my preferences for something to do with the wedding yesterday, and I said "All I care about is not wetting my pants."  You might think that is funny, but it is my biggest fear.  And my experience with Depends™ and Poise™ pads is that they aren't always enough, and they are uncomfortable and ugly besides.

I was in a group of MSers a few years ago and one patient was brought to tears lamenting bowel incontinence that rendered her incapable of wearing thong underwear anymore.  And I confess that I do sometimes comfort myself with that as evidence things could be worse for me.

But I am only 42 years old.  There was a time when I looked at urinary incontinence as proof that things could be worse from where I was.

I think, at some point, I'm going to have to investigate self-catheterization.

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