Women, men, disability, and surprises

I'm in a strange frame of mind today. After 5 years of separation and 2 years of MS, I decided to ask my ex for spousal support.
It wasn't a decision made easily.  I hate being dependent. It's in fact, one of my problems, and the reason why (if there are reasons why) MS was given to me. I need to learn to let others help me. But oh how I hate it!
So I approached my ex with the request to discuss this and waited for him to cry poverty or get riled up or anything - but he responded instead with care and support. It was astonishing.   I've been afraid to ask him about this since I was diagnosed, knowing how we used to argue over money - or rather, not argue, just avoid discussion.
If this being supportive thing doesn't stop, from him and others, I am going to have to seriously change my world view. I've always felt I had to fight my way through things.  Admitting weakness meant instant loss, I thought, maybe from some experience in my youth, maybe just from my hard-wiring.
But I am astonished regularly these days by the support I get around the MS thang, around my challenges and my successes. It's quite wonderfully heartwarming and it might just be beginning to thaw the ice walls I keep around my heart to avoid hurt.

It's the first time in my life that I've felt that I am cupped in caring hands. Thank you, thank you.

Now, now that I can feel that, perhaps I can extend that to others more readily. For the last little while, it's been hard to extend a loving hand, feeling that  - hey! - no one helps ME! Giving begets giving.

So here's a big hug to all of you out there, and so many thanks.

Photo credit:http://www.myspace.com/_avada_kedavra_

an irritant

I've been thinking. One of the things about being an independent person is that you think you can do everything yourself, and you wander about, trying on your own, when really, having an advocate with you would be a much wiser thing.

Going to see the neurologist, for example.

I sat there at my last appointment, watching the doc lose interest in me as my disease just isn't quite exciting enough for him. I watched his face change as he changed his view of me from "potentially interesting client" to "over 50 woman who has whined for years about aches and pains and they probably aren't due to MS". I watched as his face changed from engaged to absent.

This happens a lot with this MS thing. I don't know what I am expecting - perhaps that someone might tell me why , if my disease is so minor, I am almost completely numb stem to stern, why my legs muscles spasm up and down without reason, why walking is so painful when it really shouldn't be. Or why on days like today I have trouble thinking and tend to drag my mental floss through brain plaque with no effect.

It's frustrating as hell.

And yeah, I know I'm not as sick as some, but I've gone from hours in the gym to not being able to walk more than a km. I've gone from full-time high stress employment to barely able to manage volunteer activities. My life has been destroyed over the past two years - not being negative, and stuff still remains that is good - but I mean, really.

So as I sat there and he told me my disease was merely an irritant to me, (see salt in wound...), I didn't speak up. I am always wary of pissing off my care providers. I know docs turn against the complainers.

But if I'd had an advocate with me, perhaps they would have grabbed the collar of my healthy neuro, and asked him the questions. Perhaps they might have demanded more. Not that there is much anyone can do. But perhaps I would feel a bit less tossed aside like limp lettuce.

I got my return visit letter the other day. The neuro doesn't feel I need to be seen again for another year. Surprising, the anger I felt getting that letter. Nothing like feeling unwell and being told that is unimportant to anyone.

Now that's an irritant.

A stitch in time....

I feel as if I am completing an intricate part of a tapestry panel - one of those bits where the stitches are new and you have to look from the instructions to where you are sewing several times before the stitch is complete - and then do the same thing for the next stitch.
I'm learning, slowly, how to do these new MS stitches. And I'm making progress on the tapestry that is my life.
Fortunately, I've had good teachers as I progress. Old friends who are supportive, family members who keep me sane, newer friends who tease me and make me laugh, MS friends with whom I can share this adventure and contribute some teaching of my own.
The challenge of the changing stitches, the need to fit them in around the pattern I've already done, makes the overall picture immeasurably richer, even as it makes it more dificult. Sometimes it feels like the project is too big, that I've messed it up, that there is no reason to finish.
Then my helpers arrive, and show me how much I've done already, remind me that I still have more to add. Bless them. And give me my needle back. I have a flower to add in this corner here.....

Oh what tangled webs we weave..

When first we start to believe....
Yesterday I felt great, super great,, body happier than it had been in ages. I actually didn't have any pressing complaints about its messages to me, I thought we had come to some sort of agreement. I exercised, but not too strenuously, just enough to get my body moving, and it felt good. I went for a walk.
And then bedtime hit - unspeakable pain. Writhing. I slept (haha) in my bed in all possible directions. No matter where I put my limbs, they were irritated, twitching, aching like toothaches all over my body. My feet spasmed, my legs jumped, my arms moved without my mentioning internally that it might be a good idea. My fingers played forgotten piano sonatas (from Stravinsky - some atonal something).
The only thing I can think is that some of the stretches I did yesterday aggravated a lesion in my spinal cord. I've always had problems with my neck, which is where the lesion is, and stretching my neck is not overly comfortable.
I've had a few nights like this. I lie there, too exhausted to get up, afraid of the pain that will scream through me when I try to stand (cos it does). After the first few agonizing steps, it's okay, but that first step is a doozie.
It is HORRIBLE. And now I'm afraid.