So, yesterday was our Thanksgiving Holiday. I managed to make my cranberry compote and bake a pumpkin pie but that’s as far as I got.
My husband was kind and said it was ok, we could do the big meal today. I could tell he was bummed though.
Before we got married, I told him I had MS and I was a lot more active then.. he didn’t really believe it because (like a lot of people) he thought I’d be in a wheelchair if I had MS.
I was sorry I couldn’t get our holiday meal together this year but my PPMS got a lot worse in the last 12 months. I’ve even simplified cooking as much as possible. Today, my hubby helped prep some foods and I think that helped him a bit. The turkey’s in the oven, we’re watching football and all the dinner things will be ready in an hour or so.
Unfortunately, I’m so fatigued I’ll get everything heated and ready and then I’ll go to bed. I hate leaving my companion to eat alone but there’s no other choice.
How about you ? Does this happen to you too for whatever reason ? A lot of people work more than one job and have these same issues. Let’s give each other a big hug… And then another piece of pie.
Keep an eye on the isobars as this storm moves across the country and over your area. I can see that it’s going to be low pressure and high winds over me, in Arkansas, building from Wednesday and staying into Saturday. What does this tell me ? How tight the isobars are to each other indicates how strong winds will be so I know right now to get as much done as possible before Thanksgiving because I’m going to have bad sinus and head pain.
Watching wind and pressure changes can give you advance warnings of increased pain. Get weather smart and you’ll be prepared for possible pain that could affect your social life 😊
Research on tinnitus has shown that it’s rooted in the very way we process and understand sound.
— Read on discovermagazine.com/2010/oct/26-ringing-in-the-ears-goes-much-deeper
I used to drink kombucha tea in the 60’s when it was just a nice, bubbly Japanese brew. Now that it’s become really popular, some makers touting all kinds of questionable benefits, I decided to check and see if it would be ok for me to enjoy because I like the taste.
Since it may increase immune system activity, it seems to not be a good choice if you have MS or other immune system diseases.
Here’s a report from the Mayo Clinic :
What is kombucha tea? Does it have any health benefits?
Kombucha tea is a fermented drink made with tea, sugar, bacteria and yeast. Although it’s sometimes referred to as kombucha mushroom tea, kombucha is not a mushroom — it’s a colony of bacteria and yeast. Kombucha tea is made by adding the colony to sugar and tea, and allowing the mix to ferment. The resulting liquid contains vinegar, B vitamins and a number of other chemical compounds.
Proponents claim kombucha tea helps prevent and manage serious health conditions, from blood pressure to cancer. These claims are not backed by science. Limited evidence suggests kombucha tea may offer benefits similar to probiotic supplements, including promoting a healthy immune system and preventing constipation. At present, however, valid medical studies of kombucha tea’s role in human health are very limited — and there are risks to consider.
There have been reports of adverse effects, such as stomach upset, infections and allergic reactions in kombucha tea drinkers. Kombucha tea is often brewed in homes under nonsterile conditions, making contamination likely. When improperly manufactured ceramic pots have been used for brewing, lead poisoning has occurred — the acids in the tea can leach lead from the ceramic glaze.
In short, there isn’t enough evidence that kombucha tea delivers on its health claims. At the same time, several cases of harm have been reported. Therefore, the prudent approach is to avoid kombucha tea until more definitive information is available.
Although we may have enjoyed fireworks long ago, those of us with MS, Neurological Diseases and PTSD run and hide from the snaps, crackles and booms that come with the beautiful displays.
The sudden, loud sounds are a severe shock to the system, causing agitation, unease and downright panic in some. A lot of people around us don’t understand this reaction at all and may make light of it or just brush us off as “Nervous Nellies”… The equivalent of being cowardly or unable to handle a little fun.
It’s at times of national celebrations, such as our 4rth Of July today in the US, that a large part of our population tries to hide from the noises, many curling up under the blankets until it’s all over. With that in mind, here are some tips you might find useful :
If you’re ok in crowds, you could still watch the outdoor celebrations while wearing ear plugs plus noise cancelling headphones…. Don’t forget your insect repellent, those bites can add to your agitation.
IF you can’t go out in the summer heat like me, here are the tricks I use to get through it all.
1. I take an herb or prescription med to calm nerves before any noises begin (and in Arkansas, where fireworks are legal) my “calming” supplements start early in the day. I use 5mg of Valium or kava kava with chamomile+lavender iced tea as needed through the day and evening. Never take kava with any CNS suppressants or muscle relaxers !
2. When fireworks really get going I put in earplugs and wear noise cancelling headphones to listen to radio or a book. If you don’t have these things you can turn up a radio or your tv to drown out the outside noise.
3. I wear my sunglasses to shut out bright flashes.
4. I let myself have any treat I want….hmm, I’d better check my freezer right now for coffee gelato and Chunky Monkey !
If you have any tips please tweet them so others can find the relief they need and I hope you can enjoy your holiday.. Just give yourself extra special care.
I must apologize to everyone who has written me lately or asked questions about music. It’s just been an awful health year so far and I’ve been struggling to function. I know you all understand so please, don’t lose faith in me. All your letters and questions and comments mean the world to me and really cheer me up during hard times.
I still have plenty of creative ideas but my brain and body just won’t play ball. Never the less, I do not lose hope of publishing something fresh… Eventually.
I hope this finds you all well, happy and healthy. My advice is this.. If there’s something you want to do, do it ! You really never know what might get in your way as your life rolls along.
I’ll leave you with a general depiction of how I feel about being ill so often.
After an incredible slump in creativity, caused by MS interference, I am pleased to report that my muses seem to be nudging me to write again. Composing a new song or two would be a huge breakthrough for me.
Here’s the rub : How to compose music when the very process of listening to music makes me run from the room ?
My guitar work is still super, my voice and 3 octave range still intact (just ask my cat) and my love for lyrical writing is alive and well.
What took me off the stage and made me put all music aside was the effect that Multiple Sclerosis has had on my brain’s ability to “translate” incoming music and rhythm. When you listen to music you enjoy it, yes ?
Sure there are forms of music, musicians and singers you don’t care for but, if you asked most people, everyone would say they “enjoy” music.
I don’t enjoy music or repetitive sounds, it is maddening, I can’t stand it and I have to be where there isn’t music playing. Multiple Sclerosis attacked the wiring in my brain that deciphers music and rhythm. Consequently, most incoming sound translates as wrenching metal or garbled pounding. Oddly, sometimes I get a shift in brain function that means I can tolerate old music that I know by heart, usually music from 1920’s to 1960’s, but only one song at a time, perhaps once a week. After one song I have to turn the music off.
It is the worst thing to have happened to anyone, let alone a professional musician who’s been entertaining people since the age of 14.
There is an excellent book about this kind of brain damage by Dr. Sachs entitled “Musicophilia” wherein he describes several cases of musicians who lost their ability to listen to music.
My MS specialist said that my brain cannot take the stimuli of sound and, in an attempt to limit the coming seizure, takes over and has me react before I even know what I’ve done. This started in 1993 when I would suddenly go around turning off the tvs, radios and stereos in the house even though someone else was listening to them.
Those of us with MS often talk about having to adjust to new realities as we go along. It really is like something out of a the Twilight Zone. Reality just shifts suddenly, as if time and space have taken a slight step to the left, and we have to feel out this new reality and find a way to get comfortable with it because it is not going to shift back.
These shifts may happen a few times a year or, for some, only very rarely.
Occasionally, the “new reality” stays in place long enough for brain communications to settle down and reroute themselves. A window opens and there is a tiny slit of opportunity that presents itself.
I know that this is what has happened to me and my window opened, ever so slightly, in June of this year. I started knitting and the colors looked good from one day to the next, I went into my fiber stash and organized the colors to start spinning wool again for projects AND I began singing around the house.
Knowing that this window can slam shut at any time has me enjoying creative play in every moment, creating little art pieces for friends and recording bits and pieces of new tunes.
I don’t know how long this new reality will last but I wanted to let you all know that I have never given up the idea of recording fresh albums and publishing all my lyrics in an illustrated book through all these stagnant years.
The Sci-Fi and Fantasy communities have stayed with me all this time, keeping me company and writing encouraging letters and emails. I really hope I can give something back to you…. before the dark window closes again.
Be well, be happy,