In a foul mood

Arggh.
I am spitting mad, and it's a general thing, non-specific, non-directed - the very worst kind of bad mood.
Maybe it's the lingering fatigue and confusion after the fantastic Erma Bombeck Conference. Maybe it's the dieting to try to deal with my newly acquired diabetes, when all I really crave is a large Rocky Road Ice Cream from Baskin Robbins.
Maybe its a newish friend of mine who suggests it's time for me to attend a workshop on how to deal with the bad relationships in my life.
Maybe it's the bad relationships in my life.
Or maybe it's this CCSVI thing. I'm a sceptic, it's true. I don't like the smell of anything that talks of being a miracle cure - it makes me think of the snake healers in the South West, or Carter's Little Liver Pills. Talk to me of a miracle cure and I'll just betcha there's someone making big buckeroonies off of it somewhere. And I really hate the anti-neurologist and anti-MS Society garbage that is being put on the web about it.
That said, I'm none too fond of my neurologist, who resorted to way too many "supposedely"s in my report of examination and made me feel all that old feeling of "maybe I'm crazy" stuff that I lived for years before diagnosis. (See bad relationships, above)
And it's so tempting. There's a clinic in Montreal that could scan me for a mere $900. Once I got scanned?  Aye, there's the rub. Here in Ottawa, all the folks who could do the procedure to widen the veins have been told not to, and all the clients who ask for it are then sent to my neurologist, who then bounces them off his caseload, leaving me with no care.
Which seems rather rude, I think. And frightening.
So, I'm caught in a nogozone.  I am curious, yes, suspicious, yes, wary, yes. I suppose I have time to wait, given that my disabilities are relatively scant - would like to say I can't do much mentally these days, but that's not so noticeable. I can still walk, and that's what matters to the neuro. But I'm not good with waiting (see bad relationships, above).
And my time is running out. I'm still technically employed until July, and could return to my job if I felt I could do it.  After that it's a whole new job search, which is terrifying. If I could be "cured" before the end of that time - how wondrous, how exciting - but it ain't going to happen.
So I'm in a baaaaad mood.

A perpetual holiday is a good working definition of hell. - George Bernard Shaw

I know, it seems counterintuitive. But when you are used to responding to life, to the everyday crises, to the demands from bosses, clients, traffic, kids, whatever, the sudden void of an enforced perpetual holiday is quite amazing. Not only do you have to motivate yourself to move every day, you also have to find a reason for getting up in the morning, for doing the basic things like showering, eating, speaking to others.

It's all okay for a while, but when you find yourself longing for a pussycat to mew for food, you just know hell has intruded into your life.

We all want meaning in our lives. We want to think that what we do matters, that we have a reason for being here. But when you are suddenly disabled, what is your reason? What are you doing, save using up resources? Oh, I know the voices that will rumble in from the edges - "of course you are important - your kids need you!" or "Of course you have value, you have so much you have already done - you can just relax now..."

I imagine this is why the retired are so busy - to quell that little voice within themselves that they don't really matter anymore, that they could be spit off the globe like a watermelon seed and although people would grieve, the world would not be perceptibly worse for their absence. This is, I think, what Shaw was referring to in the quote above...

In the quiet of a less busy world, you have to face yourself more in the mirror. Instead of a flight by on the way to activity, you have time to look deep deep into your eyes and see the balance of your life - the good, the bad, the places where you have missed the chance to act, the places where you've acted where you shouldn't have, the people you've helped, the people you've hurt. It's not always comfortable. It can be hellish...it can freeze you into immobility, or propel you into frantic distractions.

And then you realize that you still have many many years left on the planet, and you need to make them worthy of the gifts you've received.

Just surviving is not enough.

At least, not for me.

Still searching...

Quicksand

Quicksand arises when there is flowing groundwater passing through a sandy pit that keeps the sand from compacting. When you hear this, it takes away the mystery of the whole terrorizing quicksand of the movies - the stuff that lies, unremarked, for years, until the bad guy passes by and is consumed. Often it's just the extra that gets sucked in, the infamous "black guy" in Star Trek that accompanies the bigger stars on a planet explore, only to die gruesomely.

Lately, I've been feeling that quicksand-y feeling. It's all part of figuring out what I should be within the framework of my illness and limitations. I no longer have a job, or the mental stamina to think about that job anymore. My children have grown up and they rarely need me now, I'm divorced, I live alone save for a feisty parrotlet named Dora. I write, but I don't know that I write well, or that I have anything meaningful to say.

I purposely moved to this city to force myself to deal with the anomie, to face it head on instead of hiding it behind old friends and things. I wanted to wend my way, find firm ground under my feet.

It's not easy. I find toeholds - good friends that support me, family who care for me, a sweet man who loves me, but the toeholds are still slippery, and I don't fully trust them. I need to find a place to put my foot flat down, to find myself again, to find a purpose for my life, so I don't feel as if I am just using up oxygen and resources (primarily chocolate, but never mind) with no output.

Is it enough to just live and be thankful for that? Is it enough to read and appreciate, and see and appreciate, and move and be thankful? I think we have a responsibility to do more than this.

I try, in my little ways. I try to be cheerful, to bring smiles everywhere I go. I offer little helps. I want to offer bigger helps, but resist because I am no longer a dependable worker. My skill set is rapidly deteriorating, my new skills are slowly developing. And gently, inside me, my MS is slowly dripping to take away the sand from below my feet.

How do disabled people find the will to go on? How do they continue, when they know they are no longer contributors to the sand pit of life? Do they rest on their laurels, as I have been counseled to do? Do they find ways to remain contributors, despite their increasing loss of ability? When do they decide to stop fighting the quicksand, and let go? (which, by the way is supposed to be the best way to stop sinking, so perhaps the Buddhists have it right after all)

I'm learning to stop kicking, but it's hard. I've always been a kicker. I've lived my life as an advocate, a change agent, a promoter of others. This giving in to a disease that cannot be seen and that changes day by day is so hard.

So while I'm trapped, I'm thinking. I don't want to be an "extra" in this world. I still want to contribute. Now to find the direction. And then to wriggle slowly, carefully, over to the dry sand.

GROWWWWWWWL

Well, I've been whining about life on Canada's social safety net or lack thereof - but now I've heard something that makes me really really mad. I always knew Ontario Works payments were criminally low - they are designed to make starvation the alternative to seeking employment. ($572/mo for a single person). Of course, this assumes an environment where jobs are available even to those with no money to clothe themselves or take care of themselves. That is horrible enough.
But for people who qualify for ODSP (the disability support plan), who have been deemed by the mighty province to be unable to work, the rate is equally horrid. Yep, they pay some of your drug bills, but the additional expenses of living with a disability aren't always covered. And the benign rate offered by the government for disabled persons? Oooh. $1072 a month. You'd better hope you don't want to live in a city or anything. Or a house. Or a decent apartment.
I've just been looking at apartments in Ottawa and for a one bedroom, it's over $700. Add the costs of food, utilities, transport, and clothing and you've got nothing. Oh, and yeah, you can get coverage for some things, but that means your doctor has to fill out yet another form. Because one just isn't enough.
I feel stupid that this outrage is just hitting me now - I've always known in the back of my mind life was horrid, but I've had the privilege of meeting a few folks on one or the other of these generous plans lately and I am so impressed they haven't rioted in the streets - or maybe I'm not. I know they are tired from lack of food and housing, and I know they fear the Provincial overlords who spend millions on checking for welfare fraud instead of spending it on the people who need the money, but this is outrageous. And it's my fault I've never taken the time to research the actual rates, relying on the Province to act somewhat in line with their stated goals - fool that I am!
For me, I have some luck - I have been approved (I think) for my businesses disability program, which will give me a living amount, though I won't be rich. But these people - so many of them - there must be something we can do!
Nah, it's too tough to think about. Let's watch "So you think you can dance" one more time...GRRRRRRRR.

Money money money

Money money money....or rather the lack of it! I'm at the end of my government-sponsored holiday, also known as Employment Insurance (hahahaha) for disability. Mystically, the powers that be have determined I am only unemployably ill for 15 weeks. Hard to rationalize when I have a chronic thing like MS, but there you go.
I am now waiting for the "long term disability" insurance from my employer, which I believe is arriving at the end of July. Because they pay it in arrears. Of course.
Meanwhile, the house is unsold, and expenses mount. If I were to take a part-time job, I'd be punished by having my disability cut. Of course, I don't know it I am up for a part time job anyway, after sleeping all day today after a visit to a conference on the weekend...
Phooey. And I now have to start paying for the health insurance I daren't let lapse...not with meds at $1400/month!
Not sure how this is going to go.
Suffice to say I pick up dropped pennies these days....

Life from the slow lanes - or guess when you are getting payment?

Oh, I am giddy. Totally giddy. First of all, I am applying for Employment Insurance during the worst recession we've had in years. Timely resolution of my case is highly unlikely. When I call the EI offices, I get: "Our call volume is high, please call back later" after which their automated call system hangs up.
And supposedely I am on EI for the next 4 months, at a whopping $440 a week. After the four months are up, I am supposed to be eligible for LTD. But my advisor there tells me there is often a 2-3 month wait while they clarify the doctor's diagnosis, etc. And I will also have to pay for my own health insurance, at a rate of $130 a month or so.
Plus, the health insurance doesn't cover all my medication costs (my MS drug costs $1400/month and it covers less than 2 doses, even if I pay for the most expensive coverage).
Meanwhile, I still haven't sold my house, still haven't been able to retun my car lease (needs more forms and approvals signed etc, etc) and on and on.
It's getting pretty grim. I was giggling helplessly on the phone with the insurance lady who thought it was great I had such a sense of humour!
And then she said, "Hope you feel better soon!"
I said, "Hey, that's the thing. I'm not ever going to get better. It's downhill from here."
Her response? "Well, it's good you can be up about it. The attitude will do you well. It's better than all those grumpy ones who call in..."
Endeavoring to be cheerful as I chow down on macaroni..

Financial wrigglings, or how to squeeze a dime...

People often say that life happens the way it does to teach us lessons we need to know. I ended up married to an asthmatic because in nursing school I couldn't handle mucus. I still can't, but at least I know why now. And I know that any man who carries a handkerchief is NOT for me. Especially if they tuck it under your pillow when they sleep. Oog.
One lesson I've never learned, though, is budgeting. I've always loved a good bargain, but I've always overspent to a level that keeps my creditors happy and myself counting pennies for coffee.
So, now that I'm on disability and peering at living on half my income (after just switching to living on 1/3 of my income after leaving husband (see above)), I am desperately trying to figure out how to dig myself out of my current bad financial situation. While keeping healthy and etc.
So I am seeking help, advice, coupons. I'm taking advantage of all those insurances that cover you if your income goes down, I am tearing up credit cards, cutting back on phone plans, returning my leased car, etc. It's madness, but oddly purging. I will still be in debt until I die, but maybe I will now have to get hold of it.
And maybe the pressure to work without working will lead me to do those writing projects I have been putting off...
It's a hard lesson. I'm not happy about how hard it is to detangle oneself from debt and causes of debt. I mean, living without electricity or heating isn't an option in these parts. I do need to shower. And I am bound by phone contracts and so forth that have a death grip on my wallet. But I am finding a relatively sympathetic hearing from people, who seem to want to help me out.
There is kindness in the world. Thank God.
Amazon's Friday deals
http://www.amazon.com/exec/obidos/tg/browse/-/548166?tag2=funtasia
Article on savings ideas
http://www.credit.com/credit_information/money_management/Painless-Penny-Pinching-Part-One.jsp

Thinking of disability...

I am reviewing disability and hoping to persuade my doc that I qualify ASAP. I meet with him on Monday and am arriving bringing forms and etc. to start the process. Then I plan to sell this place and move back to Kingston to a little apartment with air conditioning and try to get ahold of this disease. I just don’t think I can keep up anymore.

Yesterday I walked ¾ of the dog block here (downtown and back) and then could NOT walk the last ¼ - I felt fine but the legs wouldn’t work. I had to swing my arms mightily to get them going and was puffing and completely out of breath by the time I got home. And I’m still almost completely numb – today I found one spot where I still have sensation (my right armpit). Handy that, in case I run into any sharp or hot objects with my armpit! I mean, should I be walking about with my arm raised just in case?? Drafty. And odd.

After my walking thing yesterday I thought - dammit I have got to get in better shape - so I did my MS exercise DVD (free from one of the meetings I went to). So I go through it all and everything is doable, except marching in place. I can't get my arms and legs coordinated, and I end up lifting the arm and leg on the same side together. I try to readjust, but it still doesn't work. Bizarre. We do the aerobics part three times during the whole workout and EACH TIME IT’S THE SAME. It's like I am sending messages and my body is misreading them. No wonder I am such a failure at stepping in time to the Miis on the Wii...and, on the good side, this gives me the final undeniable reason why I will never have to go to aerobics classes. Which I never wanted to do anyway. And it might even work in speed skating…or, ahem, maybe not…

I dunno. You’ve got to admire this disease for keeping things interesting. I mean, if I had cancer, or a stroke, or whatever, every day would just be more of the same. This way I have the excitement of finding something new each and every day. Refreshing. I have an internet MS buddy who is a social worker with a wild sense of humor – she and I are talking collaboration on a book that will be an answer to all those perky “You can overcome anything” books written by the independently wealthy. It will be bitter, biting, funny as heck, and filled with all sorts of details you probably won’t want to read about your mother.