What now?

So here I sits, like the cat videos, me in a box. A box made of certain limitations, certain walls, some openings, some slides and ladders.

I'm not limited enough that most of my day is spent dealing with my MS, and for that I am absurdly grateful.
I AM limited enough that a large proportion of my day is affected by my MS, and for that, well, I am grumpy.
I have had to retire, from an interesting and challenging career. I left work at 50, after staying home with my kids while we moved around for years for my husband's career. I don't begrudge staying home with the kids. I don't even begrudge moving around. But I feel as if I haven't had a chance to show my abilities yet. It's frustrating to get to a place where things were interesting and then find myself unable to do them anymore. And five years in, I'm starting to wonder what lies ahead.

I had a lot of fun working, using my creative mind on problems. I made a lot of mistakes, I had a few successes, I LIKED it. And then I couldn't do it, I couldn't remember what I was doing, I was so tired I could barely walk, I became hyperemotional and had a breakdown from the disease.

It's more common than you at first hear. I should have known, when I was diagnosed with depression, that my brain was wearing out. I've never been depressed in my life. Until MS came along. Now it's something I battle daily, along with fatigue and pain and decreased mobility.

But I'm young yet. I'm just 55. With luck I have another 25-30 years ahead of me - to do WHAT? There are only so many crafts. I've tried writing, I don't have the mental stamina for it. I volunteer, and I can continue to do that, provided I can have a nap regularly. But is it enough?

I don't know. I search on, looking for some way to make some sort of contribution.

Approach/Avoidance or rubber-banding and MS

Having MS requires a certain amount of elasticity. And ricocheting. And it must be very hard on those around us.

Recently I applied for a job. I just did the interview, and in doing the interview I realized the following:

1. I am very qualified for the position

2. I have pertinent experience, knowledge and wisdom to bring to the position.

3. I have done a lot in the years I've been in the workforce, after starting off the kids and attempting to support my ex (didn't do that so well, but there you go...).

4. Despite all this, my MS riddled body won't let me do the job. A job I otherwise could be good at.

So once again, I am brought up short, at the fullest tension of the elastic, and then sent snapping back into my MS box at high speed. I did the interview, but collapsed on the way home from fatigue. Today I'm toast. As they used to say back in the day when I was functional.

I feel for my friends, I do. They don't know how to support me. I try doing things, and they are supportive. They know the pre-MS me and hope like crazy I can get back there. When I try stuff, they sometimes tell me that that's good, it's good not to let my disability rule my life. I laugh rather quietly at that one. I'd give good money to tell my MS not to rule my life. UNFORTUNATELY, it still does, whether or not I give it permission.

Then there are the other friends, perhaps wiser, perhaps less optimistic, who tell me gently to enjoy the life I have now and stop trying to get back into the old one. They know about the elastic lure of the familiar, the fear of the slap back. My wonderful drug company nurse, Bonnie, bless her heart, told me gently that "many MS patients find that they are just all around better off letting that old life go, and are healthier and happier..." (I paraphrase, and she was much better at saying it than I). Sometimes I listen to them, and I decide to throw myself into my new, non-nursing, non-management, non-health care advocate life. I stop reading about health news, I go to ground and wallow in writing stuff. I try for joy.

But then an opportunity comes up, like this job I applied for. I have a look over my past accomplishments, and by jove, I've had a few. I stretched my career elastic pretty far, but there should be room for more. The lure of earning a salary again is big.

Being on paid vacation, like napping, becomes less of a joy when it is mandated. And tight on the money side...

So I stretch. And I fail. And it hurts again, to realize all that I've lost. To realize that this IS my life.

What is left of it.

Oh, and bonus, I can look forward to years of it, gradually getting more limited.

Is there any better reason to fly into fancy and visualize getting back into the pertinent workforce? Or alternatively, buying a motorhome, and running away from everything? While I can still drive?

Oh, escapism. How I love it. Especially in February.

Despite the gloom over my interview, the sun came out today, and shone brightly and warmly. It is a good thing some things don't depend on me.

Juggling through disability

Strangely, this photo came up when I googled cat juggling - and yet....these are dogs....

Sortof speaks to my experiences (long and ongoing) with disability. Here's the latest:

For good or ill, I have been approved to get disability through Canada Pension Plan. This tells me that yes, I am disabled (every time someone tells me this I grieve the more...) but it means I get a certain amount of money through our social security system.

Do I see it?

Nope.

It goes to my long-term disability provider (insurance from work), so I am no further ahead.

Oh, and because I received the abysmally low "Employment Insurance" for a couple of months while waiting for the somewhat more tolerable disability insurance (a whole $1700 a month for EI, about twice that for disability, thank heavens), I may have to pay some of that back thanks to being approved for disability.

Good news is, I can earn SOME money on CPP disability - up to a whopping $4000 a year. Bad news is, I can't on my work disability. They would prob claw it back.

And biggest treat of all, the whole mess is taxable! Hoo hah! So if I ever step just that little bit ahead, I am totally screwed. I'm close enough to the tax cut off where any extra money means another percentage being taken off.

I'm puzzled. Everyone KNOWS that people with disabilities such as MS have the prospect of increasing disability and expenses hanging about all the time. It doesn't kill us, but, like giving up cheese and chocolate and wine to benefit your heart, MS just makes life seem longer.

Seemingly much longer if I can't work. Or increase my income in any way without penalty. Here in Canada, we can't write off our mortgage interest, so even buying a home is a problem.

So it is a bit like trying to juggle cats, only to find out they are dogs after all....

"First things first, but not necessarily in that order." Dr. Who

It's funny how the brain works.

Got my MRI results last week. Apparently all is stable, the two black holes I have are small (the concept of any still fills me with an unnatural fear that all of my brain is going to be sucked into them - I mean, couldn't they come up with another term for these areas of permanently dead tissue?), and there is no sign of active disease in the form of glowing lesions. This is all good news. My increasing leg symptoms are due to the old lesion on my spinal column and some spinal compression located right around it (how convenient - sheesh!) and there is not much they can do about this.

Anyway, filled with so much relief that I am actually not shifted into progressive MS, I immediately started exercising like a madwoman and followed that up with a rash of job applications. Of course I still can't see when I am tired, and I tend to burst into tears when challenged, but heck, bring it on!

I feel as if my life could have meaning again.

In the cold clear light of day, it occurs to me it probably wasn't wise to apply for the full-time management position. But heck - the lure of money was intoxicating, especially after arguing with my ex over whether he had any responsibility to look after the kids now that they were over 18. We differ on this and it is at these times that I vow I will have money again, if only to help the kids out. And the job was the kind that would use all of my experiences and the wisdom I gained through working through this diagnosis. I'm much more patient now, less snarky, less prone to judge. Few things seem as momentously important as they did before, and my experience at the hands of the health care system leads me to believe there is too much that needs fixing, right down the line, for me to fix it. I've learned that your heart may be willing, but other factors may make things impossible. I've learned that bureaucracy is an output of the banality of evil, that people use it to dilute responsibility, but also to ensure that things are done according to plan, reducing the risk of abuse. (While also freezing the system dead.) I can deal with it now, having wrestled with it in the past. I am filled with the patience needed to cope with line-ups, bad meals, octopus-like paper trails, snarling service people. I've learned the value of a smile at difficult moments, a pocket with enough to share, a touch, even if you can't feel it.

Of course, I'm dreamin'.

I couldn't work full time. I am only so mellow because I can rest when I need to, organize my day according to my state of mind and body. It's hard to be reasonable when pain is shooting up your face, and your leg is dancing solos, you can't see for the fuzziness creeping in from the outside, you feel incontinence coming over you like a wave, and you can't think of words to say to save your life.

But for a mad, wild, free moment after hearing about my MRI, I pretended it would all go away. I like these journeys into a fantasy world with no MS. It's like when I heard about CCSVI, and thought briefly, fleetingly, about being healthy again, and what that would mean. At both times, I became almost irrational in my hope. Now, as my legs jump about more and more, and as it becomes apparent that CCSVI may not "liberate" MS Sufferers as well as they hoped, rationality eases over my brain.

It's funny, but I can still write, like today, when my mouth is not working. Perhaps that's a sign.

Tightening circles

I am afraid, yes, as my friend Paula and I used to say to one another.

MS is sneaky. It makes you feel "almost normal from behind", another favourite family expression. I think I am the same as I ever was. But I'm not, and I find that inescapably hard.

No, it's not the physical symptoms. Of all the things I miss, it's the mind I miss the most...

Just had a lengthy talk with my ex, a man who knew me (as much as he was capable of) for the last 26 years. He tells me I've changed, that I am emotionally swinging back and forth on a rollercoaster, up and down, unpredictably so. He tells me I am not the same, should not trust myself in public, should warn those who deal with me that unexpected things may happen.

Normally, I'd tell him to get stuffed (I mean, my reactions to an ex are often different than they would be to another person), but he makes a good point. Before I left my job, I knew I had to leave - I was weeping uncontrollably, high as a kite one minute, low as a turtle's underbelly the next. I felt bipolar. It was the fatigue and the lesions seem to be in my mood area, perhaps.

I'm still the same - even his slight criticism of me has made me weepy. Why? Because I was offered the chance to do something interesting, and although I realized it was probably too much to take on, I was talked into a smaller role. Thinking about it now, I know I won't be able to handle it if I am challenged, which I probably will be. My memory losses are legion. Presenting is a terrifying thought, keeping track of conversations is impossible. I can focus for one to 15 minutes - but an entire half day? And remember things? In a crowd of 40 people with opinions of their own? And all the noise?

And imagine if I should break down and cry? I would DIE of embarrassment.

So I'm sad, because I realize I can't do this interesting thing. My circles of operation tighten around me. I feel my MS pants tightening around my body, making it harder to breathe.

It's a grief process every time, because I play with the idea that I can be somebody and then realize that that's all in the past. Now I will be a somebody, but a smaller one, more peripheral, girded about by my MS cerebral hug. Or is that a smothering?

Feeling the need to get drunk....;-) thus killing even more brain cells!

Fortunately I've lined up a helper who may be able to help me redefine myself. I just hope like hell she doesn't tell me to just think positive and do these things. I am too self-aware to do this, amongst my former colleagues. I still have a bit of my pride....