It's Not Lupus!

I meant to type this up when it happened, but to be honest, I'm glad that I waited for the reality of it to sink in.

In February, I had a follow up appointment with my neurologist after yet another test. First off, the test was on Hallowe'en. I'm not greatly pleased that it took me 3 months to get a follow up appointment. Having said that, it's the nature of the beast. It also helps that my neurologist is one of the best health professionals that I've ever had to interact with.

So, multiple sclerosis. It was something that my GP mentioned might explain my symptoms, even though it was rare in people my age. It was removed from the list of suspects, early on. However, when my symptoms started getting worse, it had to get added back to the list.

This most recent test was able to take it off of the list again. This news should have left me jumping for joy. I'm sure part of the reason it didn't is that my neurologist's clinic style greatly resembles an avalanche, meaning that I didn't really have time to think about it. I'm equally sure that part of it was simply shock. I have spent months getting used to the idea that I may end up in a wheel chair, or worse. *shudders at the thought of adult diapers or a colostomy bag* That I may have to start explaining to all of my very supportive friends, that Yes, I know that there are alternative treatments, but I am also a single, unemployed 27 year old. I cannot afford treatments that are not covered by OHIP. I can barely afford the medications that I'm taking now, thanks anyway. And no, I do not have the energy to apply for grants and enter test trials and all that sort of thing. This is where we get back to the idea of Quality vs Quantity. Yes, my health is kicking my ass, but I'd prefer to enjoy my good days doing what I want to do, not spending all day researching and making phone calls and writing emails to Doctors and clinical programs, and my local MP (Gee, you'd almost think I've gone over this a time or two).


So now you're wondering what I was left wondering. If it's not MS, what is it?

The popular theory right now is Fibromyalgia. I thought this was a disease which I knew something about, having had a Mother In Law who had been diagnosed with it. Turns out it's a lot more complicated than I thought. There are some who believe it to be a mind over matter sort of thing. People hear the term Phantom Pain and assume that it's a pain one feels because one thinks  there is pain. Not true.

Fibro patients show visual signs on brain scans that there is something wrong. Tests just cannot confirm the cause. Hence, phantom. Symptoms range from sleep disorders, to mood swings, to cognitive disruptions. To be perfectly honest, I'm sort of relieved to have a possible diagnosis that covers so many of my symptoms! Granted that confirming the diagnosis will likely mean several dozen more tests, as it is a diagnosis of exclusion. Think Dr House. Differential diagnosis. We test for everything until there is only one possibility left. And no, it's not Lupus :P While I am still mildly frustrated at the lack of a concrete answer, I am beyond relieved to be told that I will not in fact have to endure a needle being bored into my spine, and will likely not be suffering from degenerative symptoms. I did eventually have a good cry, and that helped it all sink in. But I spent at least a week explaining the results to everyone before it really sunk in what that meant for me. Having watched both of my grandparents fade away from cancer, and having several distant relations who have suffered from MS, my level of relief simply cannot be expressed with mere words.

Now comes the renewed efforts of balancing my life with my illness, and my pain with the drugs. The fold away cane that my Uncle bought for me has certainly been a Blessing, but I'm still thinking about investing in a wheelchair. There are still days that I just cannot move under my own power, and I don't want to be a hermit! I have enough wonderful friends that I'd never be at a loss for someone to escort me about in my throne ;) I've recently survived my first overnight convention, and am already making plans for a much bigger one next summer. More immediate plans include a week long visit in Hamilton for St Patrick's day, culminating in yet another brain scan, and a trip up North to visit my folks at the end of summer. Looking forward to seeing everyone, especially the babies :) I'm not going to let this condition keep me from living my life to the fullest.

Dealing with Failure

One of my biggest pitfalls is learning to accept, deal with, and move past failure. We're talking anything as simple as forgetting to fill out a box on a piece of OW (Ontario Works) paperwork to not having a meal turn out just the way I wanted it to. Some people will read that and simply call me anal. Yes there are people out there who are that uptight and control freaky just because that's the way they are. 

And then there are people like me who have spent a good deal of their life being emotionally punished for the slightest failure. Did I mention that I grew up in a house that utilized corporeal punishment? My dad had the 'anything worth doing is worth doing right the first time' attitude. Failing was often not an option.

I have thankfully gotten to the point where I at least recognize that I am beating myself up for a perceived failure. I can shrug off a lingering depression that is fueling itself from those feelings. However, it often takes longer than it aught to get over the initial hump of ‘oh my god! What have I done! I've spoiled everything!’

I have very high expectations for myself. I am always striving for perfection. Good enough is never good enough. I drive myself crazy trying to always do better. I cannot see the things I have done as 'accomplishments'. I cannot see the things I have survived as evidence of my strength. It makes me crazy  that it takes so much effort just to get out of bed, just to put one foot in front of the other, that it costs me so much to move in the direction that I want to go in.

You cannot win at life. There is a Game Over screen, but there is no Victory screen.

When will I realize that? When will I stop kicking my ass because I haven't done enough? I am about to be 27 and I am sitting here railing, "What have I accomplished? " I have two baby sisters, one with two kids, and husband and a house, and the other with the same, less the kids. 

I wrote a children's story when I was 17. Published it when I was 19. But it was a self publication, and other than sell enough to break even, what the hell have I done with it? Nothing! It's sitting in my basement, collecting dust. I had all of these grand plans for selling them and writing more, and making a good deal of profit from it so that I could just work whatever minimum job I wanted to that made me happy. Now look at me. 

I hate that the only real progress I have made in the past five years has been psychological - not that that's anything to sneeze at, but come on! I was working my way up through the ranks of my last job, a job that I loved, was good at, and found fulfilling  And then I was forced to quit because of my health. I cannot even get a part time job because I can never tell when I'm going to be completely unavailable, nor for how long. It's simply not fair to any prospective employers. 

Apparently a big reason that I have such a hard time dealing with failure is that I cannot accept my limitations. I have no problem attributing this to pride. I seem to have mastered the art of setting it aside in such instances as accepting OW, accepting a ride in a wheel chair when it becomes needful, or taking my cane with me almost everywhere that I go. And yet...

I strive be be completely self sufficient. Meanwhile, life keeps throwing me curve balls that make that completely impossible. I am dependent on the pills, the caffeine, OW, the people around me... I wish that these things could be wants instead of needs. I have so few wants, and way too many needs. I attempt to strive for one thing, and up crop all of these needs. It certainly adds an emphasis to Special Needs.

I have to keep asking myself if I'm doing the right thing. It's sort of like the insanity test. If I can ask if I'm crazy, then everything is fine. 

So...Am I crazy?

Declination

I have noticed that as my health declines, and more and more stress from both my health and just life in general, are heaped on me, I have been slipping out of the Happy Place that I have always been able to cling to, even in the darkest times of my life. I have become a very negative person, and even difficult to be around. This is not something that people have had to tell me, just something that I have noticed myself, and have had confirmed by others.

I need to learn to let things go. Things that never would have bothered me so much a couple of years ago have begun to drive me crazy. A good deal of this, I think, comes from being mostly house ridden, if not bed ridden, a lot of the time.

So I've been working on:

 -trying to be less negative, or to at least catch myself in the act and cease and desist in a more timely fashion instead of going on and on

-making social appointments to get out of the house

-letting go of the little things

-balancing my diet with my steady decline in physical activity (I am below 160 for the first time in over 2 years!)

-balancing feeling fulfilled with feeling overwhelmed (harder than it sounds)

-using creative outlets to boost my mood (singing, writing, crafting, etc.,)

I've already made some headway over the holidays, noticing that my dark cloud is lifting, and that I am significantly easier to live with. Let's see if I can keep up the good work.