- I wake up in the morning, wiggle my toes and put my knees to my chest and rock side-to-side a little bit.
- 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.
- 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
- 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.
Then I scoot the wheelchair over to the side of the bed and maneuver myself into it
- 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!
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!"
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.
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".
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.
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.
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.