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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Two new articles on Ncubator

Lisa

Senior Member
Messages
453
Location
Western Washington
Hiya Jody!

Two questions for you about those articles. 1. Did you really unravel that blanket and knit it again?!? I don't think I could do something like that. I get far too attached to thinks - a major packrat at heart. :) hehe

And 2. On your article about the Portal. It sounds like you are grouping yourself into the Goofball category - do you consider yourself a full membership Goofball or a monthly membership Goofball? lol :D hehehe. yes, I really do make myself laugh at bad jokes like that! hehehe :p

Nice articles Jody. :) I have been wishing this summer that my MCS could tolerate yarn, etc. For some odd reason about three months ago I just started to want to Knit! Never have in my life but I did see my mom doing it now and then when I was growing up. Very odd thing for me to start craving out of the blue.

What I have in my wintertime portal is usually video games. Yes, I admit to playing a stupid amount of Warcraft every time the weather grows cold and we go into hibernation here. I do have to say in my defense that every spring when the weather warms we cancel our subscriptions and don't start them again till October or November.

Warcraft allowed us to become fully immersed in a world in which we could be as normal as we wanted to be. Only a few people knew we were disabled and I don't think any of them in the last two years knew we lived in a tent. This last winter we were in a happy spot of friends for several months and using voice chat a lot. Many jokes were made about the way the rain on our roof sounded like we were always making popcorn - yet nobody knows it was actually rain on our tarps.

Though warcraft saves our sanity every winter when it can become fragile due to the conditions, I do miss being able to have deeper friendships where a popcorn roof is actually tarps or I can say I'm not feeling well enough to do something 20 times in a week and not be thought of as odd.

Now that I have admitted to this secret hobby, the sad truth is that Warcraft is not what I want to be doing. Just don't know what else to do that allows me to keep my hands and head busy while snug in bed, instead of thinking about cold rain. I now seem to lack sufficient attention span to read - one of the things I used to gladly give up games to do.

I have always been a voracious reader and I miss it greatly. :(

Boy, I sure turned this joking post into a bit of a downer! Sorry about that. Heh, finally remembered the main reason for the ramble about gaming. I grew up playing video games. I was ten back when the first Nintendo was becoming popular and my groups of friends all played too. Jody, when you wrote in your article about how if you had to learn how to knit at that time then it never would have happened. That's how I've fallen into video games. Old skills that I don't really have to think about much.

Enough ramble. I think I'm foggier than I realized tonight. :eek:

Lisa :)
 

Jody

Senior Member
Messages
4,636
Location
Canada
Hi Lisa,

Yes, I really did unravel that blanket. I re-used some of the wool to make a scarf for myself and a couple for the local foodbank this year. The rest of the wool is sitting rolled into balls waiting patiently for their next project. :)

I thought I could be an honorary member to keep the rest of you company. :D

I can understand why you might be thinking about knitting, it is a soothing, lulling activity. Actually some cfs experts recommend it as one of the therapeutic things us chronics could get into. Helps us step out of the sympathetic nervous system into the parasympathetic. That's where the healing happens.

I totally understand needing to find something to do with all the time that you can't use for things you used to be able to do. That's what the article was all about. I know it's very frustrating. If Warcraft has helped, well, then Bully for Warcraft, is all I can say.

Don't apologize for talking about the way things are for you. It's ok to go from a joke to some of the tougher aspects of life. That's what we came here for, right? To be able to talk to other people who understand and just be ourselves. :)
 

Jody

Senior Member
Messages
4,636
Location
Canada
My new article on EmpowHer.com just got posted.

After the last few days with Edubook, this has been quite reassuring. :) Tina my editor at EmpowHer was very happy with my article. Didn't think it was "full of errors", published it as I submitted it. Told me she really liked the piece and thanked me.

What a difference!

It's called "Chronic Fatigue Syndrome Mimics Stroke" (I've been writing there on the subject of Stroke the past week). Here is the link --

http://www.empowher.com/news/herarticle/2009/08/10/chronic-fatigue-syndrome-mimics-stroke
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Jody

I started knitting about 2 years ago. There is a small knitting shop by my house and I took lessons. I loved it but started getting alot of arthritic pain in my hands. I made a few scarves and was getting ready to make a bunch of wash clothes so I could practice different stitches. Anyway....this is when I really started getting sick. I plan on starting again when/if things become less hectic and stressful around here.
 

Jody

Senior Member
Messages
4,636
Location
Canada
Frickly,

I know this is the problem isn't it.

Three years ago (long after the blanket knitting story :) I started knitting a sweater for my grandbaby. I had a deadline I wanted to meet and was spending up to 5 hrs a day on it (couldn't do much else, so ... I had lots of time to devote to it). I way overdid it, and ended up with sore, bruised feeling hands, but also (because of a tendency to tendinitis in both arms) managed to mess up my right elbow and all the muscles in my lower arm.

I ended up with a right hand the size of a baseball mitt and a terribly painful arm, elbow was a mess. Couldn't use my right arm for anything for months. Had to sign my name for something once, and just managed to do it. Bought a bottle of pop (you guys say soda?) at a variety store and wanted to drink it on the walk home, and had to ask the clerk to open it for me. That was 5 months after the injury. :mad:

My right lower arm still gets sore, esp. if I am scared or when I was having panic attacks 2 yrs ago, felt like an animals teeth, like long needles, are biting
into my arm, and it ... pulsates. Rescue Remedy drops would take the pain away.

Huh. This is all you need, right? for me to scare you off of knitting. :D This isn't going to happen to you Frickly. I have bad arms and hands to begin with and I seem to forever be overdoing it. All this typing the past few months, Yikes! I have to move the laptop to different locations to change my position at the keyboard.

Okay, back to the actual knitting again. :) I read somewhere recently (I will see if I can dig it up later) this doctor recommends it to his cfs patients. It is a non-goal oriented thing so it doesn't stress the sympathetic nervous system. The way he prescribes it, he gives this example. One of his patients would take the subway into the city and they were to knit on the way to the city. And they were to unravel it on the way home. So it was truly just the act of knitting that soothed the nervous system or whatever, let the body just do something purely physically without the brain getting all hopped up about a project.

I have had to put down knitting for a time, and then pick it up again for a time... it is a patient pastime and it will wait for you as long as necessary. :)
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Jody......

Ok....first point....in Texas it's not soda, it's coke. If it's carbonated we call it coke. Yes.. even if its a sprite. Second...you didn't scare me. I have always had alot of pain in what ever area of the body I use the most. Thankfully, I have recovered to the point that this is no longer the case. I always wanted to learn to knit. My great grandmother taught me to crochet but I did not retain this knowledge. I will try it again but I have other stressors besides my issues. I am trying hard to get my son into a better place. I don't understand why but I can't wait to make my wash clothes.:D
 

Jody

Senior Member
Messages
4,636
Location
Canada
Coke, huh?

Really?

Okay, next time I am in Texas I will be saved from embarrassment. Thanks, Frickly. :D

I understand the worries of having a sick son. That'll overshadow so many things. It's a big, important job.

Really got a thing for your wash clothes, huh? :D

I get those nagging drives for the oddest things sometimes myself. I was picturing these scarves I made last winter, long before I had the yarn to make them with. I have the same feeling about being able to get back into gardening someday, used to love it. Didn't happen this year, did a smattering last year, and found it was too much for me.

But mark my words, someday I will follow up on that nagging drive again, and I will do my gardening! :D
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Jody

I get excited about gardening every spring. Unfortunatley, it quickly feels like 120 degrees in the shade here in Texas. This is when my excitement withers, so to speak. :(
 

Jody

Senior Member
Messages
4,636
Location
Canada
Yeesh.

We usually get alot of high 90's with high humidity around here and that makes ME wilt. Can't imagine 120 degrees. :eek:

This summer has been unusually mild staying in upper 70's and mid-80's for the most part. Had a 90 degree day last weekend and was affronted.:mad: