Thursday, 15 March 2007

How having MS affects my life and my quilting

Andee on the Quiltart list brought up the subject of how hard it sometimes is for people with MS to cope with daily life, let alone quilting. I thought I might say a couple of things about my experience. Every one with MS will have different experiences and challenges depending on which areas of the brain and spinal cord are affected. I have damage to the right frontal lobe and left fronto-temporal lobe. I also have extensive demyelination of the cerebellum and spinal cord. I won't go into further explanations about that - just say what effect it has.

Verbal communication is affected. Sometimes I have trouble understanding what people are saying or asking. My brain's ability to process information has slowed down. I have trouble translating what I am thinking into actual words, so if I am participating in a conversation or am asked a question, I might want to answer or comment but the words won't come out of my mouth. The noise filters in my brain don't work that well, so if there is other noise around I might not be able to decipher what you are saying - I can see your lips moving and know you are talking to me, but I can't separate the sound of your voice from the other noise. I avoid a lot of social situations because of this. Some people may think I'm stand-offish or don't want to talk to them, but it's actually because I sometimes can't carry on a conversation even if I want to. I also suffer from mild dysnomia (I think that's how you spell it) which means sometimes I have trouble thinking of words or use an entirely unconnected word when speaking. Needless to say, all this is very frustrating!

Recently I've been having trouble with simple calculations when making quilt blocks. I never thought it was possible to stuff up a nine patch and snowball quilt, but now I know it is. I was trying to square up a quilt top a couple of weeks back and couldn't work out how much I needed to cut off. I told my husband if I didn't stop I would be left with a potholder lol. I think that is part of the reason I'm moving away from traditional quilts into contemporary/art quilts. Harder to tell if I've stuffed it up or not!

There's also balance problems, diplopia in the peripheral field of vision, tremor in left hand, tingly hands and feet, neuropathic pain in both forearms plus the biggie - chronic fatigue. Fatigue which is sometimes so intense that you can't eat, can't think, can't answer simple questions, can't pick up your feet when you walk so you shuffle, can't even look at quilt books, basically can't function. You definitely learn to pace yourself and know what your physical limits are. Most symptoms seem to come and go depending on the time of day (if I have to do something that involves complex thinking I do it in the morning before my brain gets fuzzy), the weather (heat seems to make everything worse), what else you have been doing or how stressed you are, but the fatigue is a permanent fixture. Most of these things are invisible symptoms, so you can be having a 'very bad day' and still look fine.

I'm becoming quite stubborn, though. I don't plan on letting it get the better of me. Murray and I are flying to America on April 11th so I can go to the Quilt festival in Chicago. Then up to Canada for 4 weeks (most of that on a guided tour) then cruising up to Alaska. Then when we come home I'm getting a longarm quilting machine so I can make as many quilts as I want while I can. So there, you rotten MS! lol

Tuesday, 13 March 2007

Almost ready to start quilting again!

Delta, more photos for you at the end. Thanks for your comments.

The new house is just about organised. I think the only unpacking left is in the studio, and I can't really start on till we get the cupboards and bookshelves built. So...there is nothing to stop from starting to quilt again. I have the labels on the 4 quilts for the state exhibition and have bags made for 3 of them. I have to make a calico bag for the 4th one and that's that job done. Now where shall I start? I have an urge to quilt rather that piece or applique so I might get out some of the tops I have stored for occasions like this. Some people might call them ufo's, but not me. May not be today though. I'll have to figure out how to use the sewing machine with my left leg elevated.

Last Thursday I had a little accident. I was hanging out washing and the cat decided he wanted to help. The result? I tripped over him and landed on the concrete on my left knee. Murray took me to the hospital where they took 5 xrays of it. They don't think I broke anything but can't tell if there are hairline fractures until the swelling goes down. At the moment I have some rather spectacular bruising but a lot of the swelling has gone. I was lucky, I think. Trev the wondercat must have a few bald patches as there were a few clumps of his fur left on the ground. Poor thing hid for hours afterward, probably keeping out of my way in case I did something else to him. Rose, if you're reading this - it's not as bad as Mum might tell you ha ha.
A few of the people on my local quilting group had the book Convergence Quilts by Ricky Tims. We got together one Saturday and made a quilt top each using his method. Mine looked a bit 'green' in the top corner so I added the circles at the opposite corner to balance it a bit more. then I added a few more in other colours, then a few more - you know how it goes. I was still in feather quilting mode so I decided to quilt a feather spiral on it. I marked the spine of the spiral then did all the feathering free hand. I then decided it wasn't bright enough so stitched all the beads on, which took as much time as everything else put together! I'm still not sure I like it, but I'm not going to change it now. What do you think? Does it work?

Wednesday, 7 March 2007

we've moved house

I'm back. Murray and I moved house last week. We packed all our stuff ourselves and just got the removalists to move it. And now we are unpacking which is the worst part as anyone who has ever moved house knows. Sort of organised now but still some stuff to come from the storage unit we rented. I'll be glad when it's done - I'm getting no stitching done at all.

Our state quilt exhibition is on in Hobart on March 28-31 and I have entered 4 quilts. Three still have to have labels and I need to organise cloth bags to put them in. At least the hanging sleeves are done.

We've had the first of our innoculations for our trip to USA and Canada. I didn't realise that rabies shots were recommended. You learn something new every day, huh? Less than 5 weeks to go now (not that I'm started to get excited or anything).

Interesting news on the MS front. I've been having some cognitive problems (thinking and memory) and my neurologist referred me to a neuropsychologist to find out how the MS was affecting my brain. Apparently I have damage to a couple of different areas, the parts that controls verbal communication, visual memory, as well as noise filters and a couple of other things. This explains a lot. On a good note, he said that I had exceptional intellectual abilities and functioned on an extremely superior cognitive level before MS started working its nasty little tricks. Does that mean I'm a lapsed genius?? :o)

I'm adding a photo of the sunset last night. It was spectacular but I only got photos of the tail end of it. I'll have to keep an eye out for more.