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Meadow is taking her first vacation without us this weekend. She’ll be going to the International Kite Festival with my parents, out at the coast. Originally, Dustin and I were to come along. Instead, I am going to a good friend’s baby shower and getting a pedicure with her, which will be fun in its own right. As a result, Dustin and I have the weekend together child-free!

I’m excited at the prospect, but I already miss the little punkin terribly.

I hope to have a lot of fun this weekend, and I know she will!

I hope to have fun, but I also hope to spendĀ  a lot of time cleaning and resting. Our house is cluttery and needs a good swabbing down. I never have time or energy. Which brings me to my second issue – energy. I feel like my fatigue has worsened over the last 6 months, especially in the evenings. I can’t even keep my eyes open and my body feels like dead flesh. (Nice, huh?) I feel really frustrated lately because it’s all I can do to manage dinner and parent duties (play, bedtime, etc) when I get home from work. Then, I am so wiped all I can manage is to flop on the couch. Ironically, I can’t go to bed right away. It’s like this need for “me time” which, due to lack of energy reserves, typically involves a glass of wine and tv. Then when I do go to bed, I want to read at least a chapter of whatever book I’m plodding through (right now it’s Freakonomics – love it!). So despite all my exhaustion, I make it worse by not following my bed time.

I wish I could do more. If I was to stay up late, I wish I could do something more productive and more altruistic then couch potato-ing. I really am missing my music lately. I really want to start playing again after this summer hiatus. I want to work on my piano again because I have gotten so rusty. I would love to play in Eastside Symphony this fall season (they’re playing An American in Paris, among others), but I don’t think I can manage. Not while I’m working full time. I did it last year, and it was hard. If I continue how I feel of late, it will be impossible.

This is the first time other than during an episode of optic neuritis that I actually feel disabled.

Hopefully it is a passing worsening of symptoms. Hopefully I can improve my schedule and discipline a bit to help with that. But i have experimented, and even if I go to bed “early,” I still hit a wall at around 3pm. Maybe I should get my provigil prescription filled. It’s anti-narcolepsy medicine; they’ve found it helps in MS related fatigue.

This doesn’t even address my cognitive issues, mostly short term memory and speech, that I have noticed worsen of late.

At any rate, this is frustrating, and feeds into many of my negative thoughts. My therapist said to cut myself some slack since I AM doing so much with a debilitating disease. But I have always fought against using MS as an excuse to not be good enough. So now I need to convince myself that this *IS* good enough, and that’s going to take some effort.

No wonder I’m fighting depression. Meh.

This turned into a rant, but I had to get it out.

I once was very secretive about my MS diagnosis. I’m sure though, that if you are reading this, you know I have multiple sclerosis. I was diagnosed 8 years ago, if you can believe it. I hardly can believe it, myself. My health is so far so pretty good, that many people don’t even know I have this disease. Especially since my modus operandi has usually been to keep it a secret, especially in my work relationships.

Well, this fall, I was no longer able to do that. My optic neuritis flared up, and I needed IV steroids – stat! This required 3 days of mid-day infusions at the hospital. The best way I had to explain why I needed the time off was to come clean with what I was dealing with. I was terrified to let my boss know, but after I jumped into it, I felt great. My co-worker ladies are great. Even though I asked my boss for discretion, they all knew about it when I got to work that first day (gossips!). I didn’t mind though. They were wonderful. They expressed their concern, then went on as business as usual. I really appreciated their reaction, and non-over-reaction. I have also enjoyed my “outness.” It’s nice to be able to freely talk about my medication, or silly or frustrating things that I have to deal with, here and there.

Perhaps I got too comfortable with this exposure. I have been feeling confident as an outed person with MS. As if I had finally accepted my disease, and acknowledged that it is a part of who I am, for better or worse. And I must say, that feeling was refreshing. I held my diagnosis close to me, in the most part, in fear of the sympathies of others. I feel uncomfortable when a lot of attention is placed on me, especially when that attention is pseudo-empathetic and sympathetic. The “poor me” virus I hate so much. I hate the Pity Eyes some people give when they are trying to express the “oh you poor dear” vibe, even though I know their intentions are well placed. Unfortunately, I feel like that freedom was thrown back into my face today.

While chatting with a coworker about how interesting it is to work at a biotech company, participating in the development of future therapies for people with neurological diseases, cancer, and arthritis, to name a few, I casually admitted I had MS. She reeled for a moment, stated that she had no idea, then proceeded to be normal. Further into the conversation, she revealed that she has type I Diabetes, of which I had no idea! After disclosing our mutual autoimmune diseases, we began chatting about how that has affected us. We compared how we treat our diseases. She stated that recombinant insulin has been a god-send for her, even though she guiltily admitted she doesn’t use the version our company developed. I described how much more effective and easy my Rebif has been compared to Avonex. We chatted, described how we got diagnosed, and mutually bonded over our shitty conditions yet relatively good health.

Later that day, another coworker came up to me and stated she had overheard me say that I had lost all vision in my eye. I confirmed her suspicion that yes, I have MS. Uh-oh. I got the tongue click, and the sympathetic turn of the head. The, “oh really? oh dear. I had no idea. oh my.” Well meant, but uncomfortable for me. To further compound my level of discomfort, she brought this up in front of ANOTHER coworker, for which I have tepid feelings…who had NOT overheard me. This second coworker would never had known there was anything wrong with me if coworker number 1 had questioned what she had overheard in a more private manner. Her lack of discretion is surprising, as she is the VP of Corp. Communications. Her job is discretion and PR. Oh well.

The second coworker was so interested she questioned me extensively, which made me feel as I was obligated to full disclosure. I tried to end the discussion with the typical “you knows” and “yeps” and glances toward my lunch salad. It didn’t work. She did not avert her gaze, as if just begging for more information from me. I guess I could have shut it down, but I am too shy to feel like I’m going to be perceived as rude. (Causes me problems every time).

At any rate, I know she meant no harm, and was only exploring her own curiosity that a relatively young woman who appears totally healthy could possibly have a debilitating disease. I understand that curiosity. What I don’t like is the feeling that I am obligated somehow to divulge my illness. I also don’t like the patronizing sympathy. I appreciate when people know I have MS to understand who I am in a more complete way, or to understand why sometimes I am so tired or fumble over my words; but I do not like self-serving pretend empathy.

Maybe that’s too harsh.

At any rate, my confidence at being a person known to have MS was shaken today. I guess at this point I must continue being Out. I don’t really have a choice, and can no longer completely hide behind a veil of denial. I will just have to understand that I will receive a combination of responses, and more education is good for everyone. I guess I don’t mind being a sort of MS educator to some people.

At least I know I can expect plenty of donations for my MS Walk and MS 150 bike ride!

Flickr Photos