Well, thanks so much for that...

I subscribe to an email feed from MS Answers!! http://www.msanswers.ca/Home.aspx?L=2
I love the way it is titled in my email box with two, yes two exclamation marks. Ooh, I think. I'd better go check THIS out!!!

It's a Q&A written by neurologists and MS nurses and physiotherapists and such, in response to questions sent in by patients and caregivers. I have to say, though, the answers are underwhelming and often just damn depressing.

Like today's, below. Essentially it says, yeah, life sucks. Sometimes it will suck more. We don't know if it will ever suck less again.

I dunno, but I'm getting a bit impatient. People have been studying this disease for a long long long time, and we are still left with so many "I don't know"s.AND PLEASE CCSVI trolls, go away. CCSVI isn't an answer either. It helps some, for a time. So do a lot of things. The problem is we still don't know what makes MS get worse and what can make it get better. We don't even know for certain yet what happens during MS.

I know the best and the brightest are working on this. I hope like crazy that the development of various MS registries across the world will help isolate patterns better, and am working hard to ensure the one in Canada is everything it should be.

But it's pretty discouraging when all you get is more and more of answers like this.
Especially when I'm feeling like hell myself, and wish like crazy it would all just go away.

Q : 
I have blurred vision in my left eye. I underwent steroid treatment for 2 weeks, and this relieved the pressure on my eye. My eyesight has improved slightly. Is there an average time frame for the eyesight to return to normal?
A : 
MS relapses often affect the vision in 1 eye – called an optic neuritis. It is an inflammatory attack on the optic nerve that transmits visual information to the brain.

High dose steroids are often used in attacks of optic neuritis and other MS relapses. The use of steroids shortens the duration of an MS attack, but does not improve the recovery from the attack. So, neurologists often use steroids if something important like the vision is affected, or if a person with MS is unable to function because of the attack.

Relapses can last for days to weeks to months. The recovery time for a relapse (including optic neuritis attacks) is totally variable. It could take up to 1 year to recover from the relapse. However, some people never recover completely from their attacks – sometimes the myelin (covering of the optic nerve) doesn’t repair itself as well as it was before. Then, they are left with “residual deficit” from the attack, and may never see as well out of the eye as before.

The fact that you have had some recovery is reassuring. But you may not recover your vision in that eye completely – it is still too early to tell. There are no other treatments other than time at this point to treat the optic neuritis attack.

the challenges of encouragement

With MS, it's so easy to become discouraged. It is the easier path, the one that comes most naturally as bits of your body fall apart, or cease to function reliably, or just plain get cranky. It's the same with most of life - looking at debt, or looking at career aspirations that go wonky, or trying and failing as we all do each and every day. MS adds a layer of mystique onto the regular challenges, making the chance of success entirely outside of our control.

There's a wonderful website, Despair.com, that markets posters and "motivational" things that play on our ease of discouragement. I love their stuff. It makes me laugh. But when I looked at their calendars, which I tend to buy every year and use as a cynical backdrop to my life, I realized something had changed.

I don't want to be cynical anymore. I want to be fresh as a daisy, cheered by a raindrop, looking forward to each new day with the hope of wonderment. I think I've always been a bit that way, but now I find I am rejecting the cynical side of me, focusing more on the optimistic side. There's no real reason for this, except that, really, most of my life has turned out wonderfully. I've even been rescued from a potentially damaging management career by physical illness. Before I could do much harm. I'm thankful for that.

But encouragement is tough. 'Buck up, buckaroo!" is inadequate, and all those posters exhorting us to let up and let God are just plain annoying.

When I was trying to encourage my children, I had the same difficulty as I have now, encouraging myself. Pasting encouragement on too thick destroys motivation. Telling myself I did well to get up and get showered this morning seems stupid. Not encouraging myself enough leads to feelings of failure - what? You only did that today? What were you doing the rest of the time?

Getting the balance right is tough. Our self-expectations are our toughest critics. How to get them on-side and helpful?

Tools to Life, an online web self-help program, touts the message that there are few things we can actually control in life - the chief one being our attitude. "My attitude is my decision" is a frequent statement, and it IS true. But how to maintain an attitude of self-encouragement without becoming a mockery of oneself? It feels silly to tell yourself that you are wonderful, but in reality, who else can do it effectively? If any external person says this, the immediate response (in my head anyway) is to say, "oh, but they don't know about...." Maybe part of accepting encouragement is learning to shut that denying part off. Maybe I'll try that.