Tuesday 23 August 2011

What colour would you say that is?

Hola friends,
In the interest of trying to explain what my bout of optic neuritis is like (I think I'm on day 23 of it)...
My left eye has been misbehaving. It started with a killer headache and about two days into the headache I noticed a smudge on my glasses...only I wasn't wearing glasses. I thought it might just be aura associated with the headache, since I get visual disturbances before headaches fairly often. But no, it was a smudge that stuck! Not only a smudge, but a smudge that desaturates colour. SO WEIRD.
Many of y'all know that I'm a Photoshop tweaker. I'm excited by colour and texture. I looove rich colour. So, imagine my confusion at having regular colour saturation in one eye and not in the other.
It means this:

Kind of looks more like this:

*holy hell, Blogger. I've tried to fix this alignment for 10 minutes. Work on your image adjustment!


but much fuzzier. Duller and with a thin film of greenish brown covering certain areas now and then. Reds and oranges kind of look the same out of my left eye. Same with blues and greens. It's all a bit of a colour puddle right now. Also, y'know when you overexpose an area of a photo and a white wall and bright area of a face blend together with no discernible distinction in between? Yeah, I have that all over the place.
I can still read, write, and work just fine...the main issue for me was the pain associated with optic neuritis. Every time I looked far in any one extreme (left or right in particular), it felt like someone was suddenly pushing their finger in deep above my eye. Not fun! Not even the tiniest bit fun.
I'm happy to report that the pain has lessened. The blur hasn't changed...or not enough for me to perceive a change anyway. I can't say I'm happy that my vision is off, but it has definitely made me rethink some things in life. It makes hiking in the rain considerably more difficult because the shine of the water throws off my depth perception a little. I know that I ultimately face very real possibilities of becoming more disabled in life, and this blip on the radar has made me more determined to work around them. Incorporate them into my life as much as possible, without making them the focus. I want to hike for as long as I can do so safely and responsibly. I still want to drive...with the same qualifiers. I guess I just want to be me, and focusing on MS every minute of every day means I lose myself to it and become a person I don't have any desire to know, let alone become.
I love my life...even the desaturated version.
Now I get to tell my dad I've semi-experienced his colourblindness.
P.S. Last injection went really well. I'm switching up my routine a little and it paid off last week.

Monday 8 August 2011

Blurry lines

Since I last updated two things happened on the injection front - one not great, one pretty damn good. First thing's first.
I had an injection meltdown.
I've been talking about the injections a lot more than normal lately, and I've been trying to desensitize myself on an ongoing basis. Bringing the injection talk into my daily world led up to the most stressful injection time I've had yet. It was on my mind all day long and when it was time to inject, my stomach was in knots. I talked to Nance and explained to her that I was feeling extremely anxious about it well ahead of injection time (really rare for me - I'm never nervous before an injection and hardly think about it until I realize it's time to take the Avonex out of the fridge). So, I asked her to do the one thing I said I'd never do - I said that if I was getting stressed and overwhelmed, I was going to ask her to inject me, and I needed to know that she'd do so without argument (she knows I ultimately need to do this myself, so she'd likely say no). I'm learning not to see that as a personal failure…not quite there yet though. After trying a few of the strategies I'm armed with, I felt like I wasn't getting anywhere with the injection. One of the new strategies requires that I put the injector down as soon as the situation becomes stressful. That I walk away for a while. That I let go and return to it later. By the time I did that 3 times, the night had dwindled into the later hours and my stress was growing by the minute. So, I called N upstairs and she calmly killed the ball of fire in my chest within 30 seconds.
I was really worried that I'd be resentful the next day - mad that I hadn't been able to inject myself, pissed off that I'd relied on someone else…but the funny thing is…I wasn't. I didn't even think about it the next day. I was grateful that I had someone who could help me when I needed help, but I wasn't upset with myself. I did however, start to worry that I had given myself an out that I'd use as a crutch.
So, as last Thursday approached (changed up my injection night because I didn't want to inject while camping), I was a little nervous about what kind of headspace would develop. I got the injection ready and sat alone. Then I did the craziest thing. I looked at it. Y'see, a few years ago, I stopped watching the injection pierce my leg. That seemed to alleviate some of my nervousness about the situation, so I kept doing it. Last week, I talked to the therapist and we briefly touched on that side of things…and t got me to thinking if I should be watching…if it'd change anything. So, I watched the injector…and it grounded me. My thoughts were still and quiet. I relaxed my grip and some crazy magic happened - I breathed in a relaxed manner without having to force it into being. I won't lie and say it was an easy injection, but it's the quickest one in months, and I came away from it grinning.
One interesting point I noticed last week was that I seem to wait for the wave of stress to hit me. I get the needle ready and if I'm not feeling panicked, I seem to wait until the worry creeps in. This seems poignant somehow.
In other MS news, I'm currently experiencing a bout of optic neuritis. I've had a headache for 8 days (less and less each day), and my left eye is painful to the touch and painful with extreme movement in any one direction. Tender. Shoulder checking while driving hurts like crazy. My vision is mostly okay this time, but it feels like I have a smudge on my glasses (even when wearing contacts). I can see past it, and can't see the smudge itself, but it messes with my vision a little. Sometimes it even seems like I've a faint piece of lint on my eyelashes…a wispy visual disturbance that I can't pinpoint. All in all, it's not so bad and doesn't compare to my firs bout of it. I don't love it, but the literature is reassuring about it and leads me to believe it's temporary. The headache is bearable now, which is a big relief because camping with a migraine would not have been ideal.
In non-MS news, camping in Fundy was super fun! Nance and I hiked a few trails while the families took their kids to the playgrounds and pool. I love, love, love sitting around a campfire. I don't even know if I say a single word most of the time, I'm so relaxed. The kids all seemed to have fun, and Abbey had a blast in the mud puddles (she looked like a chocolate lab by the time we hit the waterfalls on the Laverty trail). We found a handful of geocaches and I finally reached the 100 mark! One of the caches was the site of a mysterious crater. Kind of neat to visit those locations - the hidden ones only locals know about. Overall, the weekend was a huge success even though we - five adults sitting next to tents and speaking quietly so we wouldn't wake the children in those tents - were warned by security to keep the noise down. We were hardly murmuring and the campsites on either side of us were ours. I'll definitely return to the park to hike, but come on, lighten up!