Wednesday, March 11, 2009

MS Awareness Day 4...winner 1 and another finish

We are now halfway through MS awareness week...phew. I am happy to announce the first give-away recipient - Elaine Adair Pieces! Congrats Elaine! I will be pulling another name Friday night. I will also be bringing the ideas to my Physical Therapy session on Friday so the deadline for ideas will have to be noon on Friday!

The Five fat quarter and airplane binder in the photo are on it's way to Elaine. Friday's winner will get another set of fat quarters and a Moda charm pack.The winner of the best suggestion (see Sunday post) will get this jelly roll and an airplane binder. (Can you tell I have been making a lot of these airplane binders! They are a lot of fun and a good quilty-gifty thing to have on hand...besides I've already given most folks I know a bag so I had to find something new!)MS Factoid Number 4: Over 400,000 people in the United States have been diagnosed with MS. 200 new cases are diagnosed every week.

My take on this: So many of you have commented or emailed saying you have MS, you are related to someone with MS or know someone with MS. I am sorry to say I am not surprised. MS is a long term prospect. Very few folks die from it so even though the numbers of those with MS may not be as high as other diseases, a person once diagnosed will most likely carry that diagnosis for decades. There is no cure.

I had one interesting email which asked which symptom do I have the most difficulty with? My first response was whichever symptom I have that day....but I took some time to think this over and I would have to pick...Fatigue. This isn't tired. This isn't worn out. This isn't something that a cup of tea and a sit down will take care of...this is you've been thrown in the deep end of the pool with cement boots sort of FATIGUE.

I think it is my choice for most difficult because folks think they know what it is. I mean everyone has pulled and all-nighter at some point. Or had a really bad hangover. The flu. Run a Marathon. Been on maneuvers in the desert for two weeks on rations and no showers. I have done all of those (yes, including the hangover...) and none of them hold a candle to MS F-A-t-i-G-u-e.... The best I can describe it is like being underwater and trying to run. Your arms are heavy. Just turning your body can throw you off balance. Sometimes I have problems hearing (though they say it is cognitive issues brought on by fatigue...) Speaking can take too much effort...sometimes I can see the word in my mind and almost feel the word but my lips can't make the sound.

Now the good news is that with a bit of behaviour modification (no more exercise until it burns...very little alcohol...stay out of the heat) and a bit of pharmaceutical assistance this isn't a big problem for me anymore. I've learned to obey the warning signs - a big step from just recognizing the signs and seeing just how far I can push it. Also a bit of training for my DH was needed...when I say the F word...fatigue folks...he knows it is serious and if need-be he calls in pizza.
Wow, I went on a long time on to quilting. A Finish! I'm rockin', I'm rockin'...this little wallhanging (I think it is from an old Kindred Spirits book) just needed the corner tri-angles sewn on so I could start hand quilting. I got carried away and already put the buttons and fun stuff on it...bad I know. It will be a pain to quilt but I'm going to give it a go. I'm going to use Tony'a hoopless method which may help!

Well got to run and clean a bit. My sister and her husband are coming by on their way back north. They are going to help me set up my Grace frame! That is if I have cleared enough space in the sewing room! I admit to storing some needlework supplies and ribbon in the drawers of the spare bathroom...where is the strangest place you hide/store crafting supplies? (OK there are some fatquartes in the liquor cabinet and beading stuff in what looks like a tool box in the garage, and a bag with hexagons in the glove compartment.....)


Mimi said...

Lucky lucky Elaine!!

I LOVE the pink fabrics, sooo cute.

Take care of yourself. << HUG >>

karenfae said...

some of your symptoms sound a lot like the symptoms I have when I am in a really bad flare from my polymyositis. The muscle are so fatigue and weak that I can barely lift my arm above my head to dry my hair - that kind of fatigue. Or if you get down on the floor for something you are so weak you have to have someone help you up - is that the same for MS? I wonder how much the same the two diseases are? The best I can come up with is that you just rest, take your time, and if you can exercise very carefully by just steady slow walk, use an exercise band for very slow controlled moves for your arms to try to keep muscle tone. I am lucky have not had a very bad flare for 16 years at least, right now a mild flare that is more rash problems than weakness and fatigue.

Kathie said...

sometimes I think we all need to recognize the warning signs when are bodies talk to us.
SLOW down and just learn to relax...and yes I have learned its ok to call up and have a pizza delivered for dinner when I am just exhausted.
Interesting that your DH had to learn as well your warning signs....thats WONDERFUL he is there to support you as well. Happy to see another finish by you...keep quilting!
congrats to Elaine.

Piecefulafternoon said...

Really Really cute quilt - and great info about MS - always good to know these things.

*karendianne. said...

Yeah man, fatigue is it here, too. Fatigue and well, walking. Can't forget that. Sheesh Karen.

Grace frame - bonus. This will be great.

Elaine Adair said...

Oh Happy Happy Day!!! And winning this is pulling me out of my dumpy mood - what amazing timing! And I also have areceived an award to boot from across the ocean! 8-)) Springy fabrics and MORE! 8-)))

I'm gonna make it to spring after all!

Thank you bunches!

Joyce said...

Congrats to Elaine . Your posts have made me count my blessings and good health is right at the top.

KimP said...

I'm so jealous of Elaine after seeing what she is getting!

Thanks for mentioning the "F" word. Fatigue is my biggest problem. Cooking and cleaning are big energy suckers for me, so a few years ago I finally got someone to come in to clean the house once a month. As for cooking, I love salad bars. Also, ask my friends, like VickiW and Tammy, how often I manage to park myself under their dinner tables!

Lindah said...

You are so fun-ny! That is really creative storage for your quilty stuff. I could never come close to that kind of creativity. ummm...after she was gone, we discovered that my Mom kept her store of chocolate bars in her lingerie drawer...Does that count? lol

belinda said...

Congrads to Elaine!! I'm am sooo
glad you are getting a design wall
put up...yeah!! AND another finish....I have forgotten what those words mean.....
I have been learning so much from you this week...thanks again for sharing!

quiltmom said...

Congratulations to Elaine - she is a lovely lady as well as a lucky winner - I enjoy going to her quilt blog too.

So Siobhan do you have ways that you combat fatigue? IS it mostly that you try and pace yourself or are their other tricks?

I would think trying to do things that reduce stress would be helpful - soothing music, warm baths, drinking a cool drink or warm ( depending on the season) would make each day more relaxing. Does Massage therapy or acupuncture or meditating help to keep stress at bay?

Thanks again for sharing your knowledge and reflections of living with MS.
It is much appreciated.

Clare said...

Lucky Elaine.

I can't believe you've got stuff stored in the glove box! I only do that if I've bought something I shouldn't have and it has to remain hidden until it can be smuggled into the house. My secret purchases are usually DMC floss which can be easily hidden.

Have you read that Cathi at Celtic Knots has just been diagnosed with MS?

Donnamo said...

I love the quilt and your gifts are really awesome.

So sorry about MS, I really don't know anyone personally with it so it very informative to read your blog (which I check daily, I like it so much).

Lazy Gal Tonya said...

I'm glad you've learned to stop pushing so hard, and even trained DH. Woohoo! Hope you can keep sis from throwing out your scraps and good luck getting the frame set up.

Rachel said...

I just found your blog through a google search for the Virginia star pattern...I guess it's somewhere on your site. I just wanted to say that my mother in law also has MS and loves to quilt!! She has great organization skills so she keeps everything in her "decompression chamber" (quilt room) very neat. I know that when the fatigue hits she can't sew or do anything really. But luckily her symptoms have been staying at bay for a while now! lovely site

Diane said...

MS fatigue is, indeed, one of the worst symptoms to manage. I call it "hitting the wall" because there's no way around it other than dropping everything to sleep. I've slept on the floor in the middle of a pile of laundry I was folding. I've slept in the car when it was parked in the garage, because I was too exhausted to go in the house. No suggestions other than to give into it rather than fight what your body so desparately needs...REST.

lesthook said...

I have been very interested in this because my 20 something stepdaughter was diagnosed with MS a couple of years ago,shortly after having her first child. I want to understand it and what she goes through. And I am a big reader of quilting blogs!

Anonymous said...

I haven't read through all the comments so don't know if anyone has mentioned these 2 things. One is a product & the other is a technique. I have neck & shoulder pain from a car accident 10 years ago. These 2 things are a help.

The first is the Martelli Rotary Cutter. You use it with a natural hand position that cuts down on fatigue and stress.

The second thing is for hand quilting (which may not be your thing *smile*), but the Thimblelady's hand quilting technique puts less stress on the body.


katie z said...

I went on a week long trip to Boston when I was fresh out of high school with a woman who had been recently diagnosed with MS. The hardest thing that trip was her depth perception was non-existent. Traveling with her made me realize how NONaccessible most places are - curbs up to your knees, no alternatives to stairs, too-steep stairs on the bus/subway.

When I arrived on my college campus, I found myself analyzing everything for how this lady would ever get around - she wouldn't be able to.

Catherine said...

I use a lot of decorative boxes as storage for craft items. My rationale is they at least look nice stacked up even though I sometimes have to dig, of course, to the bottom one to find whatever it is I'm after.
I second the comment on the Martelli rotary cutter. It makes rotary cutting so much easier on the hands/wrists.
The other tool I would not want to be without is the Gypsy Gripper. I have strength issues in my hands which makes it almost impossible for me to hold a ruler steady. The Gypsy Gripper solves that and keeps my hand/fingers out of the way of the rotary cutter.

Sew Create It - Jane said...

It's been really interesting to read about MS this week...some of the coping suggestions are the same for Fibromyalgia...everything in moderation and watching that you don't over do it...and I can definitely identify with the new manual for the body analogy!