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

7 comments:

Julaine Lofquist-Birch said...

You will love the Chicago festival...be sure to watch for the Quiltart reception information that Karey will let us know about soon, I think! Maybe I'll see you there...

Anonymous said...

Hi-My DH has MS so I understand although I can never "know". He's been in a nursing home (he's only 58) for almoost 2 months because of a heart attack, on top of the MS. He has many of the same symptoms you do-he can only walk with a walker & then slowly. Anyway I just wanted to say thank you for posting.

DejaBlu said...

Cat, I thought you might appreciate this post by my daughter Ramie, she posts a lot on her journal about her MS experience, one of my favorite posts by her on the subject and it shows who she is as a person with a life altering illness:
http://delusionalangel.livejournal.com/1319330.html
She also has Sarcoidosis, another auto-immune disease. The docs now think it might have gone into neurosarcoidosis, and that it might be the actual cause of the majority of her symptoms because she is not responding to the MS drugs. Everyday has been an adventure for sure.

Anonymous said...

I'm Andee's daughter, she sent me a link to here. Just thought I'd say I understand.

Jacki from Quiltart said...

Thank you for sharing your experience, both with your ms and with your spirit!

Tomme said...

Good for you, Cat! Although you can't necessarily control your symptoms, only you get to say how you're going to let them affect you. Carpe diem! Tomme from QuiltArt

Gwycon2 from NC said...

Hi, I'm a Quiltart lurker. . . :) 1st off, your quilts are amazing. 2nd, you, and your quilts, are inspiring! I have printed out a bit of your post to read on my "not-so-good" days. Thank you.