Xanthia's MS Life

My birthday is a week away and for the very first time I'm struggling to come to terms with my age. I'm not going to say what number it is but it's closer to 40 than it is to 30. Physically I know I don't look my age - I look younger damn it! But my memory is so unreliable and I don't know whether it's because I have several lesions in my brain holding up traffic or if it's just a "natural part of aging" - an expression which makes me feel oddly uncomfortable. I rely heavily on lists to get through life now. Without all my lists bills wouldn't get paid, errands wouldn't get run, chores wouldn't get started and of course I would wander aimlessly for hours in Target (no seriously, I would). So, when does the memory really start to go? I think I'll explore this topic more in depth this weekend...if I remember to.

To my great surprise and delight I had an unusually high level of energy over the weekend which was a good thing because of all the social engagements I had lined up. Saturday in particular was a very good day. Angie and Diego's party was so much fun I'm thankful I didn't have to miss it. In fact I ended up being one of the last to leave and boy did we get silly. I made some very interesting new friends, yay!

If only every weekend could be like that. Oh well, I'll take em when I can get em.

Fatigue is an invisible symptom that I believe most people with MS suffer from. Even though it's so prevalent it's one of the most difficult to convey. I don't think that I adequately communicate the extent of my fatigue with the people around me. Language becomes tricky and empathy short coming. When I say "I'm tired" they might hear "I'm sleepy" or when I say "I'm wiped out" or "I just can't focus" they might think I just need to drink more coffee. Oh if only it were that simple!

My fatigue however constant is always evolving too. Since I stopped taking my anti-fatigue medication the days are becoming more unpredictable. It's hard for people who don't suffer constant up and down energy battles to roll with me. People make plans. They want to stick to those plans. They aren't sick so why the heck should they skip a movie and drive out to my place to hang out instead? See? No empathy.

The reason that it's so important to make myself understood is so that I can manage expectations placed on me. I'm not a flake if I say yes to an invitation to a party but then bow out at the last minute but my friends might think I am. If I don't make it clear that my fatigue is so bad that I cannot get out of bed let alone safely drive they might not understand. So, that is one of my main struggles right now. I'm trying to learn how to impart what I'm going through without alienating people. It's harder than it sounds.

My neurologist managed to convince me that Tysabri isn't the best option for me right now. The risks involved aren't worth it considering my *relatively* low disease progression. Even though I admit she's right it's still disappointing because it was extremely convenient to take Tysabri only once a month unlike Rebif which I had to self inject three times a week. So a few people died after developing a fatal disease linked to the drug... so my "chances" of dying from it too are one in a thousand. I really, really wanted to take Tysabri. Stupid statistics.

I have a lot of paintings - I mean a LOT. I only started painting because I wanted real canvases for my walls instead of framed posters and I figured even some crappy thing I came up with has got to be better than a Renoir print behind cheap plexiglas. Who could have anticipated that it would turn into my main outlet? It's my therapy, it grounds me but I'm no good at it. I have no delusions about my talents or more to the point, lack of talents. Last night I was thinking about all the poor no-talent hack slobs (like me) who despite all evidence that their art is worthless crap churn out new work year after year.

How much will I produce in my lifetime? How many people are there out there just like me? Where does a lifetime's collection of mediocre art go to die? And is there no Patron Saint of Mediocre Artists? (yes, I actually wondered this out loud) Turns out there isn't. So, I'm applying for the position.

Vote for me; Xanthia - Patron Saint of Mediocre Artists!

My dear old friend Jim has graciously agreed to be my surrogate date for Markus and Tricia's wedding next Saturday. Even though we aren't romantically involved at least I don't have to go alone and hey, with all the single women in attendance he's sure to get lucky! He's even promised to bathe and wear clean clothes, what a trooper.