So I’m about 2 weeks into this Fibro thing, and this current flare up is a bit of a roller coaster. The days seem so long, the past 2 weeks feels like 2 months. I get SO happy when it seems the pain has subsided, only to become crushed when it comes back.
This is something I need to get a handle on, I need to work through. From what I’ve read, just IS an up-and-down road, but mentally coming to terms with this is almost as hard as physically coming to terms.
I see myself as a Warner Bros. cartoon character, just waiting for the anvil of Fibro to fall. Okay, that’s a little dramatic. Sorry.
Yesterday I had a massage (I bought a gift card last year, 3 massages for the price of 2!) and had an adjustment right after (the massage therapist works through my chiro’s office)
I hurt. Sleep has been hard the past 2 nights, and I can REALLY feel the lack of it in my shoulders and joints.
The night-before-last the pain was so bad that I was incoherent when I woke up, and I missed the online chat I’d set up with my Combination class students. Bad teacher…
The students were very nice about it, but I felt like doggy doo.
Oy. I think I’ll just rename this blog, “Come and hear Annie whine…”
However, getting out yesterday felt very good. I don’t get out much now, but it was nice to see the ‘hood, to visit Target (I had to buy some gluten free flour and earbuds) and feel a little bit alive.
Yay, alive!
And I got a small virtuous internal squee when I told my chiro that I’d been taking Vitamin D and cutting out wheat, and he got a very, “That’s impressive…” look on his face. I rarely get that look.
So today my job is to edit a few videos, shoot a new one for the Combination class (on binding off, how exciting!) and create a few pdf files from existing videos. And I’ll do it all from my bed with a heating pad slung around my shoulders.
And, if you’re in the Twin Cities and you can refer a good cleaning person, I’m in the market for that. I can’t clean – when I try I hurt and I become insanely winded. Gerry does his best, but he’s not that far ahead of me in the pain department. Hannah’s a great kid, but she’s 13 and Max is 11.
The result? Our house is making me CRAZY. I do NOT want to end up on some basic-cable clean-your-damned-house show.
REMISS
I have had TWO spectacular yarns in my hot little hands since this SUMMER and I have not blogged about them. I am remiss in this, it’s wrong of me, because I LOVE them so much!
I also just received a box of BRAND NEW yarn line with some economical, interesting products which have an incredible palette.
I will now attempt to make up for my lack of gushiness (I felt it, I just didn’t blog it..)
FYBERSPATES SCRUMPTIOUS
I first used this for a sweater I’d made for Yarn Forward in the UK. Customs mishaps ended up keeping the sweater out of the magazine (and costing me $70) and it’s STILL looking for a home. Pattern written, ready to go, I just have lacked the energy to put it together and post it.
This yarn, though, is wonderful! It’s not tightly spun, so it can be a little breaky/pilly if you don’t treat it with a firm but gentle hand, but the results are WORTH the effort.
While in Shropshire this summer I scammed some from Jennie, the Fyberspates Queen, in a most beautiful gray color (charcoal) which I was going to use to knit Gerry a sweater. That hasn’t happened, but it WILL. Yes, it will. Yes. It. Will.
In addition to being a lovely yarn that feels great in the hand and makes a beautiful fabric, it’s one of the few yarns my son just LOVES to roll into balls. Sometimes he can balk when I ask him, but he was happy to roll this up for me. Hmmmm, maybe I should knit HIM a sweater…
BTW, here’s Jennie’s current SALE page – it’s worth a look!!
GREAT NORTHERN MINK YARN
I’ve had a few “manly” colors of this yarn for MONTHS and I keep promising the company that I’ll work something up with it!
Well, I finally am! While I’ve been laid up I have a lovely black and tan hat pattern that I’m working up for Gerry. If it’s good, I’ll offer it in some way, but right now it’s just something to keep my hubby’s head warm.
This yarn is spectacular. And – bonus (especially for the minks) – no minks are harmed in the manufacture of this yarn.
This yarn is direct from the producer, not available through yarn shops, which keeps the price reasonable. They have a mitten kit for $24, which seems like a steal to me!
At the time I got the yarn, only natural colors were available. Beautiful jewel tone colors have been added to the original hues, though, and they’re stunning!
So between taping the new “how-to” video and editing today, I’ll be doing some more work on that MINK hat for Gerry (his grandfather used to be a furrier in the garment district in NYC, he was born to it!)
And he can use it – it’s supposed to be -15F today (with the wind chill…) so I’d better get it done fast!
I am very intrigued by the mink. It looks gorgeous. Is it soft? I’m thinking a cowl or scarf, hmmmm.
It isn’t whining to discuss your life. This is what is going on and it is hard. One of my best friends has been living with fibro for a long time and it is a roller coaster. Has your doctor discussed a sleep aid with you? My friend takes one nightly and while it is a pain, it helps her out a lot. The fibro gets much much worse with lack of sleep (at least for her). Also, in the few times she has an interruption in her meds it takes a bit for it to build back up in her system, so hopefully the longer you take your meds the better it will get. I will say this though, she is a professional actor, so over time she has been able to get it under control enough that she can put that kind of strain on her body. It will get better. It may just take some time to find the right combination of drugs. Hang in there and remember that the reason we all read your blog is to share your life, the good and the bad. And of course the yarn.
Dear Annie, You are in agony. It is not whining. Read melissaknits blog for July 09 and her one yesterday and then decide a few things. You can’t live like this, you must find a doctor who knows something real. And it is terrible since you are the sole support for your family.
I’m sorry you feel like doo-doo-ca-ca, Annie. It’s hard to be upbeat and all that when your body seems to be betraying you. I had to laugh, though, at your proposed blog title, as my last post has “whiny” in the title!
Hope you feel human again soon.
p.s. Mink yarn? Sounds unbelievably soft.
I’m sorry to hear of all your pain. I’ve been there (different chronic illness–I’m now on disability), and pain can be so crippling. I don’t know if this will help you, but I found a great book and instructional CD with exercises for dealing with pain…The book is titled Break Through Pain by Shinzen Young. The ompanion CD is described as “A step-by-step Mindfulness Meditation Program for Transforming Chronic and Acure Pain”. I hope you find some relief!
I’m interested to learn that the fibro community is trying glutenfree living to reduce pain. I’ve eating glutenfree for about 5 years now, for genetic celiac digestive problems, and have learned so much about what else is out there besides wheat. A lot!
This link has an interesting comment where people found that eliminating various foods greatly helped their fibro pain: http://surefoodsliving.com/2008/11/06/fibromyalgia-chronic-fatigue-and-gluten-intolerance/
I have a friend who greatly reduced her fibro pain by eliminating onions. The pain triggers seem to be different for different people, but certainly worth exploring!
Everytime you write about this, you help someone learn about what a fellow sufferer is doing to feel better. It’s not whining, it’s investigative living!
Just thought to add–beer is glutenrich, from the barley. If you’re living without gluten, you have to drink glutenfree beer–it’s usually made from sorghum. Anheiser Busch makes one.
I have no real advice or suggestions to offer you… I wish I did. But I’m here, same as with so many others, whether you need to talk about your knitting or your pain. Or even the weather (coldcoldcold!).
We’re with you. Good luck.
Have you ever read Lene’s blog called the Seated View? She has rheumatoid arthritis and writes a column for an RA newsletter.
She has wonderful things to say about living with pain and coping with life when you are in pain.
The best part is, she has a lovely world view, gives book reviews, posts links to other interesting things and generally has very thoughtful and insightful things to say about a wide variety of topics. And I think you see the world from the same angle she does, especially politically.
I’m anxiously waiting for my February clas in combination knitting. I think I knitted that way when I was in high school and it was quite fast. I still knit quickly with not much movement of my hands, but I know there is an even better way to knit for me.
Hang in there, Lindsey
Another sleep suggestion: are you allowed to take melatonin? Ask your doctor — it’s over-the-counter at Target and at Whole Foods — I use it because I travel so much and am often too wired to get the sleep I need.
And you’re not whining! As someone else here said — it’s investigative living. We’re here to help, to listen — and to push you on!
Glad to see you making use of the good days. They help balance the bad days. Hang in there.
I have a cousin and a childhood friend in the Twin Cities. I’ll check in with them re: a cleaning person and get back to you.
Annie,
I highly recommend Two Bettys Green Cleaning Service. http://twobettys.biz/
Anne,I have Fibro also,about 5 years now. I have good days and bad days , I also suffer from migraines. My primary doctor doesn’t believe in fibro, I went to a pain specialist.He also has me on trazadone, some days it works and some days it doesn’t also a fibro med called Savella, I don’t like the side effects of Lyrica. I knit to help keep the pain down and to keep my mind sharp.The mink yarn sounds mmmGood
As others have said, Annie, we read your blog for you, for your life, your perspectives and, of course, the yarn-y stuff. I have learned a great deal today about resources for dealing with pain so you are educating us while learning from us – and isn’t that what life is about?
Take cheer, Annie. You can and will deal with this; you’re learning the way.
hugs and prayers to you and yours.
Annie,
I really hope you’re able to get some sleep soon, lack of sleep always seems to make things much worse….
If you’re thinking about natural supplements to boost your health, you might want to look into taking Magnesium. It’s a natural relaxant. I had a recent scare with my blood sugar that knocked some sense into me to start taking better care of myself. I’ve been taking the magnesium at night and have found that it really does help me sleep. I’m pretty sure it also acts as an anti-inflammatory, so I just wanted to throw that at there.
Hope you’re feeling better soon!
Lisa S.
Oh here are some other tips from Hester
1.I sure hope you are on some sort of pain meds for the short term – it will take your body a while to heal and there is no point in suffering anymore than you have to.
2. Gufanisin (Mucinix) – spelled something like that. It was a substance that was originally made by Chemists for possible use with RA. A friend who has really awful genetic RA used it in large doses for a while and it made a huge difference for about 6 months. This substance is what the TV ads for Mucinix are made – to bust up the mucus for colds, etc. One time when my Fibro was giving me h*ll, and I had a cold, I took a good swallow of cold medicine that had some Gufanisin in it. The next morning I woke up pain free! I was astounded. You can buy this stuff over the counter as Mucinix. The effects may not last forever, but it may bring you some relief in the short term.
The way I was able to control my Fibro was in two stages, short term and long term.
Short term – pain meds, and Mucinix (Gufanisin). There are some protocols on the internet on how this stuff works. And 40,000mgs of Vit D for 3 months.
Long Term – CPAP machine for sleep apnea and then 1000 Vit D every day. Once a month some Motrin.
Annie – there are Drs. out there who know about this stuff and can really help. Old school Drs. don’t believe in Fibro. My Dr. explained Fibro to me as a syndrome of symptoms caused by something else. In my case, it was severe sleep apnea. I hope you can find out what the cause, or causes of your Firbo is (don’t you love my grammar) and work on healing the cause and healing the Fibro.
I’m sure the minus degrees in Minneosta aren’t helping you – it has been 17 degrees in GA the last few nights – and snowing!!
Hang in there and I hope you find some relief soon – and yes, heating pads can be your best friend. I guess I said this before, but I was astounded when a regular MD said that Fibro was a good diagnosis for me!
Best – Hester
I’ve had fibro for the last 7 years. It does take getting used to. A tip a friend told me that is really hard to do is don’t be tempted to do too much on a good day, you’ll only pay for it later. I try to set a timer for doing some tasks that take physical activity like housework — 15-20 minutes then take a long break to rest — write/knit/read/etc.
My acupunturist helped most with pain more than the massages (which have to be light. Books that I found helpful:
Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition) by Devin J. Starlanyl and Mary Ellen Copeland
From Fatigued to Fantastic by Jacob Teitelbaum.
Good luck.
For a cleaning service, if Two Bettys doesn’t work out, I’ve had luck using an agency I found in the Yellow Pages. Just be sure to pick one that is bonded like Merry Maids.
I just noticed in a catalog (Gaiam.com/mayoclinic) that the Mayo Clinic has a series of “wellness solutions for” a variety of issues, including Fibromyalgia. Perhaps your library could get it for you. You can read the back of the box on the website.
I was just going to say this:
“Long Term – CPAP machine for sleep apnea and then 1000 Vit D every day.”
When I don’t sleep with my CPAP my back KILLS me, almost to the point that I can’t move. If I use it as I should, I have almost no pain…weird, but scientifically sound.
I hope you get to feeling better, Annie. Life sucks when you’re in pain and it’s hard to think of anything else.
Ooooooo – that mink yarn looks yummy! I have found that insomnia is a fibro sufferer’s worst enemy. As you’ve described, it is kind of a vicious cycle – the insomia makes you hurt more & the pain makes it hard to sleep. And I have also found that Benadryl (even the generic version) works better for me than any of the prescriptions that I’ve tried. I’ve also found that it is absolutely essential that I spend a long time stretching out after exercising. I generally do 45 minutes on the elliptical trainer & at least half an hour stretching. I also try to spend several minutes in the steam room. Moist heat helps tremendously (well any form of heat). But I’ve also learned to listen to my body. generally exercise helps but, when there is a strong storm front approaching (I am very weather sensitive) working out can actually make me hurt more.