Thursday, March 12, 2009

MS post Day 5 and quilt room progress

So by now ya'll have this figured out...if you comment you go in the drawing and if you comment with tips on how to make quilting easier you go in two drawings. For more details see earlier posts...Only one more day of MS Awareness...

MS Factoid #5: They don't really know what causes MS. They know what they can see - that the myelin, which is the protective covering surrounding the nerve fibers of the central nervous system is destroyed and replaced by scars of hardened "sclerotic" tissue. Why the myelin is being destroyed...not a clear answer yet. The thought process includes genetics, environmental, and viral...or some combination of the above.

My take on this: I am not a doctor but I am thinking c - all of the above is the most likely choice. My friend, who is a doctor, thinks that sometime in our lifetime they may find that there are multiple causes and that MS maybe broken into separate categories by cause. Right now it is sort of a market basket diagnosis. Makes sense. There are lots of studies going on and they are posted on the MS Society website. Recently a researcher in Italy may have found the gene linking MS patients. Another is looking at the increase in MS diagnosis among veterans who served in Iraq during Dessert Storm which they think may be environmental. And there is yet another one recently published with more data linking exposure to the Epstein Barr virus with MS. There is still a long road to go.... Anna, asked what do I do for the MS fatigue. When it hits there isn't much to do but rest...lots of rest. I do have some preventative tips that I think make sense for any illness...
1. Like so many folks have commented...pace yourself. It is not just that we aren't as young as we were yesterday. MS gives you a whole new body owners manual to work with and you've got pay attention to it.
2. Know your "triggers." I know going outside to work in the yard on a warm day is like hitting 16 at the blackjack table or, in quilters terms, starting to freemotion quilt a fresh quilt-top without checking to see if there is a full bobbin the machine...it can bite you where it hurts! Mine are easy - heat, overeating, alcohol, or anything thing that can cause a fever.
3. Nutrition. This is important for everyone but instead of just getting hungry I can get laid out with fatigue that lasts days. And it isn't just hunger - dehydration is a major no-no. On the other hand they encourage me to drink coffee and tea...Whoo hooo...my Dunkin donuts java is medicinal!
4. Stress. This is a slow energy eater for me. I can't do the warm baths (heat is bad) and the massage therapy hasn't worked too well. (found one woman in Greece who did a great job but that is a bit far to go for a massage...even a good one.) One thing that does help me is to close myself up in my sewing room and play with fabric. That is looking through my quilt books. Just down time with the pretty things and the pets...a meditation of sorts....
5. Exercise. This is tough...how to exercise with sweating! I had to totally rethink working out. I grew up as a Jock. I still own a Fonda workout tape (feel the burn....) That whole mindset had to go by the wayside! I do stretches every day. I walk early in the day before it gets hot or late at night (my Dh says in the summer I keep "vampire hours.") Once a week I do water aerobics and physical therapy. I have to constantly remind myself to NOT BE COMPETITIVE. Not even with myself...if I do one less lap than last week it is only data...do not worry. So not the mind set I grew up with!

On the Quilting room front there is progress. My sister and BIL worked all morning with me to put up the NewJoy Quilting Frame. (OK, I just kept Macbeth out of the way and brought coffee and brownies when required...it is still helping!) It looks great and I may even finish...I mean quilting finish...a few projects on my own this year. The big surprise...I had measureed out floor space for this. It said for the 76 inch model do such and such...OK. This was a quilter who wrote the directions...it really measures more like 93 inches floor space so you can quilt a 76 inch quilt. Duhhhh!!! More rearranging needed.
The boys that packed out my house in the U.K. continue to amaze me. The boxes for the quilt frame were taped shut when the movers got to the house but sure enough when we opened them here today the moving boys managed to have stuffed some of my fabric in them. It is like magic. I think I will be finding fat quarters for in amazing places for years! Anyways, I did find one of my "how the heck am I going to use this" pieces... My Robet Man. Isn't it great! THis is so not me and so me at the same time! A guilty pleasure...you bet. I bought it in 2000 and have moved it three times. I am not cutting it up for just any project.....I'm sure you all have a "robet man" fabric in your stash!

Phew this posting stuff is getting tough...time for more coffee and a brownie....

15 comments:

SubeeSews said...

You need someone to add some casters to your frame legs. That way you can shove it against the wall when not in use and pull it out at an angle for quilting.
Hubby put locking casters on mine and I love it.
I too get sick with overheating. It was misery for me as I worked in a factory. Luckily I drove a fork lift and could get a "breeze" that way. Until I was diagnosed I thought I was just weird to be sick from heat. That made me love winter. Many years went by until the diagnosis. Such diverse symptoms.
I love those bandanas that you can chill and wear on your head or neck. I also use scented water to soak them in so they smell nice...aromatherapy via Subee sweat.

limpingalong said...

My Robot Man fabric is lovely, blue with beautiful silver dragonflies. What am I ever going to do with it?
Now, on the other hand, I would use Robot Man for a quilt to send to Africa. We make baby quilts for babies in Uganda and they would love the quilt, no matter what the design!

Melissa Stucker said...

I love your blog! I just jumped into my sewing more this year and am really enjoying myself. If I could offer a tip to someone on sewing, I would say to plan, plan, plan. If you are prepared for your project, you will be ready to sew when you feel good and not waste time getting things together; thread, cutting tools, pattern pieces, etc. HTH!

Mary said...

I bet it's hard to stop working when you're in the middle of a project. I tell Keith that when I'm in the zone, nothing gets done around here except for my quilting. It would be hard for me to stop working to keep from overdoing.

My machine is on casters but I don't move it around much in the townhouse -- I used to move it some in the apartment to get more floor space when I was working on borders. I only walk around one end of mine so one side stays up against the wall and I leave enough space behind it to have a working *aisle*. It's a good thing Keith lets me have half the house just for my quilting!

belinda said...

Looks like you are making head way
in the quilting room.........ok..are you ready for my making your quilty life easier..*LOL*..*LOL*...I'm laughing
too hard...get you some 'medicinal
marijuana'.....*LOL*......I just
couldn't resist with all the talk about it these last days...Calif and Oregon wanting to legalize it!

KimP said...

That's a very interesting comment you made about folks who were in Iraq getting MS. I'm interested because when I was 14 my family moved to Saudi Arabia. (My father was in the Army.) I wonder if that had something to do with me getting MS? I don't know.

Thanks for sharing your triggers. I always thought that it was weird that not eating properly or not enough could trigger a MS attack, but now I know that happens to you too. And then when I have the attack, I don't feel like eating very much then. So it takes a while to get over it.

Other triggers: stress at work, airline travel, and heat. Sometimes its sewing too much and not taking enough breaks! I spent a week at my friend Anne's house last Labor Day, with VickiW and we literally sewed all week. I was exhausted when I got home.

Again, thanks for doing this; it's great to read about other's experiences with MS!

Piecefulafternoon said...

What wonderful fabric - would be darling in a little boy's I Spy quilt (that way you could use a little and save the rest).

KimP said...

I forgot to mention one of my "cures" when I have an attack: Coke and Cheeze-Its. Don't know why this makes me feel better, but it does. Helps with migraines too. Give it a try!

quiltmom said...

HI Siobhan,
I think your robot fabric is very cool - some little boy would love it - My kindergarten boys love robots, transformers and super heroes. I might not have robots but I have some pretty wild and crazy fabrics in my collection -I occasionally wonder why on earth I bought some of those pieces.
Hydration is a really important thing for people- I know I don't drink enough water and sometimes not enough liquid period. It is hard to remember to grab time to go to the washroom some days at school:-)
I know that one thing I need to do more when I sew, is to take frequent breaks where I change my physical position- It is really easy for me to sit at the machine for long chunks of time and find myself all stove up because I haven't changed position.
Your sewing room looks like a busy place - a very fun place to be with good light - Perhaps you will be able to get casters for your frame to help in the moving of it.

This has been an interesting week-
Hope you have a great weekend.
Regards,
Anna

Lazy Gal Tonya said...

look at that sewing room! purty. wheee, a quilting frame too. I remember when you weren't allowed to have any coffee - glad that's changed. can you have as much as you want or just a mug a day? LOVE that robot man fabric - that is fabulous.

Lazy Gal Tonya said...

p.s. I think Robot Man would be a great one for a whole cloth quilt, well, with some borders attached.

Dionne said...

Love the robot man fabric! Like Tonya's idea as well. I never thought about the casters to your frame. Personally I LOVE casters, I would love EVERYTHING in my house on casters. Mmmmm, well with three cats and three kids maybe not!
Cheers,
Dionne
PS - People in my area often have HUGE vitamin D deficiencies. They are doing a big study to see if that is linked to the extremely large percentage of MS diagnoses here.

LizA. said...

I don't have MS, but I do have Lupus. I've learned over the years that pacing myself is so hard to do. Learning to stop BEFORE I start "feeling" it is the key. If I spend too much time doing any one activity I pay dearly for it. Usually it keeps me from doing anymore of that activity for a week or so. Slow and steady wins the race.

Lindah said...

What an interesting post! Congratulations on your new frame! May you spend many happy, relaxed hours with it>

Sew Create It - Jane said...

LOL - had to laugh about finding fat quarters in weird places...I don't think any of us would think to use fabric as padding in a move...that is definitely a bloke thing!