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.

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.

Life: Quantity vs. Quality

What the hell is the point in a long life if you live it in misery? And no, I'm not talking about suicide, or people who are just plain melancholy.

They've switched my birth control because I was showing possible warning signs of blood clots, and have a family history of circulatory problems. I have spent the last two weeks bubbling with hormones, and popping tums because my stomach is a sewer. Last night, I protested out loud "I'll do the two months of guinea pigging, but if this keeps up, I'm switching back. I'd rather die from a blood clot than live like this, and I'm not being dramatic!"

I mean it. I am not about to subject myself to nausea, indigestion, and over all moodiness just because my other stuff MIGHT cause a blood clot. I didn't start taking painkillers because I couldn't handle the pain. What I couldn't handle was the nausea, indigestion, and overall moodiness!

I have been an absolute nightmare to live with. I've taken to throwing things, slamming doors, and swearing out loud when I have a temper flare. Then, when the temper dies down, I apologise to the people around me and then go sulk in my room, overwhelmed by the guilt of what I've just done. I've spent two weeks calling myself stupid, idiotic, childish, and even a coward.

I should be able to handle this! But with everything that I'm already dealing with...Add to that the stress of trying to keep up on my cellphone bill, meds, and rent on the pittance that OW provides...Trying to make plans to go and visit my family for two weeks at Christmas...The house being topsy turvy because one of the roommates is moving out...

I've been thoroughly disappointed and disgusted with myself at every turn. Temper tantrums quickly followed by bouts of depression. I actually caught myself seriously contemplating suicide for the first time in my existence. Sure, I've asked myself 'Do you think it's bad enough that you'd end it?' and generally I scoff and laugh at the preposterous idea. But yesterday, while crying my heart out in the shower, I caught myself staring that the razor and applying logic to the idea, listing reasons why it was in fact the right thing to do. I proceeded to cuss a blue streak, call myself a dirty rotten coward, and then finish washing and get out of the shower.

It took me 24 hrs to talk to someone about it. I actually considered calling the Suicide Help Line because I am the type of person who hates to be a burden on the people around me. I figured if I called someone who's job it was to listen to this sort of thing...But I ended up talking to a friend, instead. I had to laugh when I was informed that this was a thing that was actually expected, considering all that I'm going through. I suppose that makes a certain kind of sense. We can't be strong forever.

I want to be clear that I was not, and am not threatening to kill myself. The fact that I was reasoning it out in my head scared the shit out of me. I didn't keep it to myself for those 24 hrs because I didn't want anyone to stop me. I didn't tell anyone because I couldn't bear the thought of adding that sort of burden to someone else's shoulders. I felt, and still feel, a certain amount of guilt for having the thought to begin with. I am not a quitter. Nor am I a coward. I have strong feelings on the topic of suicide, as do some of my friends. I felt embarrassed to have even thought it, never mind to have admitted it out loud, and now, in a public forum.

That bullshit aside, I need to smarten the hell up. I need to stop being so negative. I need to stop lashing out. I need to be a better friend and roommate. I need to go back to being a better person. I have to stop doing the things that trigger that guilt within me, so that I can pull myself up by the bootstraps and out of this mire of depression.

I know that I'm depressed. Have known for quite some time, and had been doing certain things to keep myself stable. Raging hormones have upped the difficulty level by several degrees. But I can do this. I can survive this and anything else my body, my meds, and my doctors throw at me. They say that the proof of the pudding is in the eating. Well despite all of this kerfuffle, I've lost 8 lbs this month and am below 160 lbs for the first time in over 5 years!

I can do this.

I will survive.

I will live a full and happy life.

Mental Health: I

Something that I've heard repeatedly during this whole thing has been, "You are so strong, I have no idea how you do what you do and still stay sane!" Well, for starters, that's assuming that you consider my baseline mental state to fall within the realm of 'sane'. Many do not.

But in all seriousness, sanity is what you make it. To date, I haven't been dealing, I've been coping. There is a significant difference. The biggest distinction between the two being that the second is largely hiding from the problem, while the first is actually working through it. In my opinion, coping over the long term is not a good thing for one's mental health.

We all have different coping methods. I've cycled through throwing myself into different things, some more destructive than others. There's been work, alcohol, intimacy, Gaming (D&D, MTG, console gaming, LARP, etc.), and most recently, housework.

My employers certainly appreciated me throwing myself into my work. I became the person they could expect to show up early, and not complain about leaving late. The person who was available for on-call, shift swapping, and extra shifts.

Alcohol, I have to be extra careful with. Partly because I have what I refer to as an addictive personality, and partly because the pills that I take magnify the affect of the alcohol. (Before you have a coronary, read the disclaimer in Physical Health: II) Makes me a cheap drunk which, to me, is not a bad thing. *wink*

As for intimacy, well, lets just say that I haven't been in a monogamous relationship since 2010, and leave it at that, shall we?

That leads us to Gaming. Gaming has become my little obsession. There was a time that I was participating in three to five Dungeons & Dragons games a week, doing a Vampire live action role play game once a month, not to mention between-game session stuff via email. And that was before I quit my job...

During the couple of months before my health forced me into the ranks of the unemployed,when at home I would spend my time sleeping, or playing the Xbox 360. My three favourite games were BioShock, Bulletstorm, and Borderlands. These were the kind of point and shoot games that I could play even when I was exhausted from the pain and lack of sleep (This is back when the pain and nightmares meant I was averaging four hours a night of sleep. More on the nightmares later). I played through Bulletstorm, BioShock 2, and the last half of Borderlands in the last two months before I moved to London, leaving the Xbox behind.

I've traded it in for Magic the Gathering (MTG) with my housemates, three of whom are fellow Gamers, and each have several of their own decks. I have one that was built for me that I've tweaked, and three that I've built myself. I'm also back to computer games. Things like Diablo II: Lord of Destruction, Torchlight, and Torchlight II, all of which I play with one of my housemates when he has time, or on my own between housework. Part of this Mystery Disease is not being able to sit for extended periods of time without excruciating pain in my back and shoulders. If I can find a comfortable enough chair, and an outlet for my electric heat wrap, I'm good for an hour or two at a time. After that, I have to get up and stretch, but it's still a really long time for me to be stationary. I prefer to be mobile every half hour, which makes movies at a theatre a killer. I've also dabbled with other console games, as we have a PS2, and a Wii, which, as I understand it, plays any of the Nintendo, disc based games.

Which leads us up to housework. I've mentioned in other posts that I have ADHD as well as OCD. I live with four other people, and am the only one not gainfully employed. This means, in my mind, that there is no good reason that I shouldn't be doing the lion's share of the housework. I am one of those few special (read insane) people who actually enjoy housework and find it relaxing. I am considered by most to be a very industrious person. The problem is that I am accustomed to being able to work all day outside the home, come home and do housework, go be social, and come back for more housework. It has taken me some time, and several physical breakdowns, to find a balance between my mental health and my physical health, as far as housework goes.

On that note, let's talk about good days and bad days.

A bad day means that I am limited to things like putting the dishes away, and sweeping the floors, and even those are a struggle, because I am nearly completely numb in my left side. It means needing my cane if I leave the house, and using the railings and likely the walls, to keep myself upright on the stairs, and being overtly conscious of how many trips up and down I take. I often camp out on the ground floor and don't go up or down stairs until bedtime.

My worst days also include left/right confusion between my brain and my body (meaning to do something with the left hand or foot, and having the right respond instead, and vica verca), the inability to string more than a few words together without stuttering horribly, the occasional loss of a line of thought, and huge holes in my generally ample vocabulary. These are generally days when no one hears from me. I hole up in bed watching movies or in front of my computer playing simple RPG's.

A good day immediately following a bad day feels like a gift from the Gods. Even though my baseline keeps sinking, anything better than a bad day is fine by me! Though it leaves me struggling not to overdo things around the house, or going for walks, or social stuff. I have to remember that though I may feel like Superwoman by comparison to the previous day, overdoing it will land me right back on the couch, if not the hospital (which thus far, I have avoided).

My current struggle: Find a long term solution that resembles dealing rather than simply coping.