Facebook , your UNreality pains and bores me.
I like to “socialize” with real people with real emotions, not something filtered for public consumption.
I have no interest in presenting you a dream/fake/self and I have no desire to follow your fabricated little snippet of what you want other’s to know as your life.
I am annoyed by the constant bombardment of advertisements from all directions.
Most people don’t even know the larger part of their “friends”, being so flattered to get a friend request… and accept.
Some people use “unfriending” as making a point, a sort of punishment, there, I unfriended you! Go weep!
People become gorillas and judges and lovers, all in our virtual world, sitting in front of their screens, sipping beer or tea or worse.
Enter discussions, join and leave groups, watch who else enters discussions, joins and leaves groups, as if any of those actions would have any meaning!
People post pictures of themselves in the most beautiful narcissistic ways, people post pictures of all sorts of stuff to get reactions, likes, comments, glory to photoshop, glory to stealing random pictures from the web to, uhmm, make your point?
So its all good for me, I am going back to real life, at least as real as it gets for me. This person at The Red Eye Portal has a pretty good ramble of the relief this brings.
If you are my “friend”, you got my number. If you want to contact me and share and yap and laugh, do so. I will not judge, long for, wait, comment, expose, exhibit, yell, blast my political opinions to you or others on your or their facebook posts!
Ahhhhh, this, feels good!
Facebook , your UNreality pains and bores me.
It has been some 15 years since diagnosis, and about 20 years since my brain started to turn to mush, my body even mushier…
The American Chronic Pain Association’s summary is this:
“Fibromyalgia is a medically unexplained syndrome characterized by chronic widespread pain and a heightened and painful response to pressure (allodynia). Other core symptoms are debilitating fatigue, sleep disturbance, and joint stiffness. Some patients may also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling (paresthesia) and cognitive dysfunction.”
I am one of these stubborn people who do not want to become puppets of the medical system and take “medication” for the rest of their lives. And yes, I’ve met others who are the same 😉
I am re-visiting, because I want to tell you of my own experiences about what worked for me so far, and a few little things that have not worked.
1) Pain, dealing with pain
Using pain medication for a prolonged time should not be an option, thankfully I do not have to go that route as I am severely allergic to pain killers and anti-inflammatories. Fibro pain, in my experience, does not get better by waiting for it to get better. It does seem to be in muscle and connective tissue. You already know, don’t go and get a massage, its a killer. As touch and pressure is so highly elevated in perception, even a gentle and well-meant massage is agony, don’t do it!
What helped me somewhat is that I accepted a new baseline of pain, some things just become normal and I accepted that as feeling ok! Good, that’s the mental part. If you have the same thing every day, it can become your new normal, the less you aggravate over it, the less it will bother you or have power over you!
Another part of acceptance is that there will be even worse days, and you’ll have to take it easy, these will pass.
I tried many suggestive mediation audio CDs, things like that, while very pleasant to work with, didn’t do a thing for me for the pain. Couple of beer or a glass of wine work quicker…
The first 10 years: walk!
If you have been glued to your bed/couch, this will be hard. I’d like to tell you to start with short distances and work yourself up to longer and longer ones, like in any exercise. I found, that doesn’t work, you will each and every time just, uhmm, hurt more and be more miserable. I found that going for AT LEAST 45 minute walks at a time, WILL work in making you feel better. Getting up and out and getting over the first 10 to 15 minutes is the killer. Do it! Trust that after the first (daily) hump, you will feel much better and the rest of your day you will feel much better. Do it every day!
You may begin to notice that if you can’t walk due to time or weather or whatever, you miss it and your body will miss it, there will be less energy and more pain.
Look into other forms of exercise once you feel stronger. My weapon of choice was TaiChi, everything else just made me miserable. At first, TaiChi made me miserable… again and again. Whatever you choose, stick with it and make sure you have an experienced teacher (nope, not a DVD or book) who can observe and encourage you to go forward or ease off.
Glorious was the day, when I for the first time again, felt muscle soreness!! Like a real good sore muscle from working it, that went away a couple of days later! If you don’t have fibro, you can not appreciate how good that feels. Our “normal” is, you move in some way, you get sore, you stay sore, for weeks or longer. The pain is in no relation to what you have done, very mean, very discouraging.
Key for me is that I HAVE to get UP in the morning. Any prolonged lying in bed will bring me further away from comfort. Also, refer back to the definition “heightened and painful response to pressure”, yes, pressure from lying in bed is agonizing, so, getting up is a better option
Notes on progress:
Once I accepted that everything I try and do will take so much longer to progress than before or compared to other people, I was really fine. Just be patient!! If my teacher says, this might take you 3 months to get, I translate for myself to 3 years! Sounds harsh, but hey, what have I got to loose? I am still progressing, just much much slower. Repeat an exercise 100 times to get good at it? Make that 1000, and so on and on. It does seem to get “better” though, slowly but surely. Many years from normal for me, but I can notice improvement in this respect.
Very easy, it it doesn’t grow, don’t eat it. If it comes in a package, don’t eat it. Eat foods as unprocessed as possible, raw is good, gently cooked is better and easier on your system.
No brainer should be: avoid processed sugars, and they are in EVERYTHING! Read labels if you feel you have to buy something that comes in a package…
Do this as a suggestion, just slowly ease your tastebuds into more natural, unprocessed foods and don’t go crazy about it.
Start your day with a glass of water. Every day. Before anything else, starts your metabolism, works wonders for stiff arthritic joints to get them to normal quickly in the morning. Don’t forget to drink water as you go through the day. I am a coffee addict and like beer or wine, tea etc. Works well for me if I balance out any “not so good” beverage with at least the same amount of plain water during the day.
Well, maybe not cheaters, but quick fixes: “green shakes” with anything but the kitchen sink in it. I base my shake with kefir, add green powder (nanogreens and/or Kyo Greens) frozen or fresh fruit, cucumber, chia seeds, baby, kale, spinach etc etc, blend the heck out of it and enjoy.
Again, not a cheat, but even quicker results: add FRESH tumeric and ginger root (organic) to your shakes. No need to peel, start easy on the tumeric, some people’s stomach can react to it. After a week of a small piece, go a little larger, maybe pinky finger sized pieces.
Second cheat that helped me a lot at first, especially with exercise muscle recovery is Colostrum. Some protein powders have this added (nanopro) but you can also get it separately as powder or pills at the health food store.
best supercheat juice: pomegranate try it…
So there you go, this is what so far is working for me. Move every day, never stop, if you have a down day, move a LITTLE and at least walk, then plop down and “take a day off”.
No help with this one. I am absolutely clueless how to combat this other than to avoid human contact (for obvious reasons..LOL) and wait it out and again, not stress about it. Fog does seem to be caused or enhanced by mental stress. All I know is that with the improvements in my physical body, the fibro fog has stepped into the background most of the time. A few stupid days per year but not more.
Patience, Patience, Patience
today: Today I feel MUCH better, stronger, younger than 10 years ago, it has been a journey!
next installment: TaiChi and Fibromyalgia, or, how I met my own devil
Here are some of my bobbin lace books that need a new home. All are in very good to new condition and paperback, unless noted! All prices are WELL below current Amazon prices.
Note: if I need to ship to you (you are not local) I will have to add postage to your book price. I will ship cheapest way possible and send you a scan of the receipt after paypal payment and after I ship. Postage is pretty outrageous these days
Email me at firstname.lastname@example.org with your address and the books that you would like and I will get a price from the post office.
thank you so much for all the wonderful people who have given a new home to my books and threads and bobbins. I am NOT doing business or give out information over facebook. I am NOT befriending anybody whom I have not personally met. If you need to contact me, leave a comment on this blog or email me. Very simple
LACER magazine “Bolillos”. Lots of patterns with original size cardboard prickings inside. Fan, cross, doilies, edgings, flowers, cross, 26 pages.
$5.00 plus shipping
Elwyn Kenn: Point Ground Patterns from Australia, Kangaroo Press, 1986
Pamela Nottingham: The Technique of Bobbin Lace, Dover, revised edition 1995
Brigita Fuhrmann: Bobbin L:ace, An Illustrated Guide to Traditional and Contemporary Techniques, Dover, 1976
Elsie H. Gubser, Bobbin Lace, Robin and Russ Handweavers, 1982
Geraldine Stott: The Bobbin Lace Manual, Dover, 1995, used appearance
Pam Robinson: A Manual of Bedfordshire Lace, Ruth Bean, 1985
Barbara Underwood: A Bedfordshire Lace Collection, Ruth Bean, 1995, HARDCOVER, NEW
Ulrike Loehr: Kloeppeln, Handbuch mit 400 Tricks und Kniffen, Toppm 1992, HARDCOVER, SIGNED
Brigitte Bellon: Weihnachtliche Kloeppelmotive, Barbara Fay, GERMAN, HARDCOVER
Doris Southard: Lessons in Bobbin Lacemaking, Dover1992
International Old Lacers, Inc. Magazine: The Bulletin. 1997 to 2003, 24 issues
Joyce R. Willmot: Lace Flowers, Ruth Ben 1987, HARDCOVER
Ulla Fagerlin, Borgitta Hulterstroem: Knypplade Bilder (Swedish Lace Motifs), Barbara Fay, 1996, 3 languages incl. English and German, HARDCOVER
I have a few stamp sets that I sorted out from the collection, they are listed on craigslist here:
A Tree for All Seasons: $ 6.00 (4 stamps, like new)
Blooming with Happiness $ 15.00 (6 stamps, hostess set, RETIRED, like new)
Merci: $ 10.00 (6 stamps, RETIRED, unused)
Organic Grace: $ 10.00 (4 stamps, hostess, NEW in box, unmounted)
Blooming with love: $10.00 (8 stamps, 1 has light ink on rubber, others like new)
(like new = very clean, no ink, not used)
$45.00 for the lot
For a Friend: $ 9.00 (6 stamps, 1 stamp has ink, others are NEW)
Friendship Blooms: $ 9.00 (5 stamps, like NEW, unsued)
Wonderful Weaves: $ 5.00 (4 stamps, RETIRED, used, have ink stains)
A Little Bit of Happiness: $ 9.00 (4 stamps, 2 lightly used, 2 NEW)
Lots of Thoughts: $ 10.00 (6 stamps, RETIRED, NEW)
Sincere Salutations: $ 12.00 (8 stamps, 3 NEW, others used, ink)
$50.00 for the LOT
Set of 4 NEW, unopened, unused EZ mount rubber stamps by artist Michael Strong.
Ready to use with acrylic block.
$ 16.00 for the set of 4 individual stamps.
It is, that when your body and mind become unimportant, that you can truly listen to yourself.
Yesterday I got rather intimate with the current Microsoft Office Word program. I really didn’t like the switch to the tabular layout and was constantly fighting to find the most basic tasks…. but now I discovered a whole new appreciation of it and getting more comfortable figuring out how to do what I want to do! So that was a good exercise in detective work.
Went about to make myself a workbook for the 108 form. It had to be easy to use, make sense (to me) and hold up to hopefully extended use and scribbling. Made a file that contained all postures/moves on half pages, added lines to write on and a bit of stamping on the cover pages:
I used 1 1/4 inch zutter coil in the binditall to bind it on a short side. Pages were printed on full pages of card stock, double sided, and arranged so that the facing page to a posture has room for “applications” to write in:
Application pages have a yinyang sign watermark, had to try that out too 😉
Finally I will no longer loose my 108 pages, the front two pages have all postures of the form in order:
The covers are the same size as the inside pages, usually one would make them a bit larger. They were sealed with decoupage glue so I can wipe them if filthy. But distressed a bit with ink so it starts out looking a bit smudgy and used.
Much fun, plenty learned, and fun to use!
It seems like it was a few lifetimes ago when I was diagnosed with fibromyalgia.
Such a quiet and “good-looking” disease, I am surprised this society has not gotten much farther in figuring out what to do with it.
I do think I cope very well, it is mostly annoying the heck out of me. I think Cindy O’Neil said it just wonderfully (Vitality Magazine, 2001):
” Accepting my physical limitations has been the most distressing issue to deal with.”
You were so used to being able to do SO much, ALL the time, and now of a sudden, seems like you need a vacation after hard labor like, say, eating breakfast… now THAT is annoying and disturbing.
I don’t have to tell anybody all the shit that goes on with fibro, anybody can google that. Here is what I found helps some:
Walk! Walk every day, after 20 minutes you WILL feel better and walk some more. The more you stay still, the more you’ll hurt. Yet, if you walk “too much”, you’ll hurt more 😉
Don’t eat crap, and again, we all know what that is. Eat unprocessed foods, that about covers it.
Qigong and TaiChi, helps, a LOT and can also be frustrating because you’ll want to do so much more and just can’t.
So then you have some “good days” and feel almost normal, yeah! and do more, and pay more a few days later…
So far I think what helps most with playing TaiChi is that you learn to relax (a much different relax than slumping in front of the TV..). Relaxing seems easy, but believe me, its the hardest thing I have ever attempted to allow to happen. (I didn’t write “do” on purpose). You learn to let go, not mind, and, well, relax. Your muscles, your tendons, your mind, everything.
To say we “work” on that sounds a bit crazy, but it is hard work to try to relax. Re-align body and mind.
This doesn’t “cure” fibro but it sure makes it easier to live with it. That is if you can ignore that everybody else in class seems to have more stamina and an easier time doing everything and probably doesn’t hurt ALL the time either… but even that, you learn to let go and not mind….just feels weird sometimes.
Perhaps this will one day relive me of this incredible over-sensitivity for noise, light, touch, smell, etc. everything is exaggerated and, well, hurts! makes you nervous, distracted, annoyed…
Which reminds me, time for a hair cut, my hair is longer than a couple of inches again and, yup, hurts! especially at night. This is so pathetic, anybody wanna laugh with me? 😉