Slowly Recovering

I'm getting there, I'm getting there!

I ordered new vitamins last week and they arrived today. I've decided not to renew my pool pass this quarter. Not only do I not want to shell out that kind of money right now, I've started a new fitness regime that benefits both me and my dog. He's got some health issues too, and has been ordered by his doctor to walk twice a day to help it, so out we go. The last two days the weather has NOT been permitting, so we've just sat around, but we'll get back to it tomorrow morning, rain or shine. (Here it's usually rain, which I can cope with. It's the 50MPH winds that are difficult.)

So tomorrow's plans include getting back to the fitness regime and taking my vitamins again. This will wear me out (the vitamins) for a couple days at least while my body adjusts itself once more to the nutrition influx, but that can't be helped. Maybe I'll finally get some sleep.

Sleep issues are a common MS symptom. The past week or so I've really been suffering insomnia (it's almost 4AM right now) as well as anorexia. Upside - I'm down to 152. Downside - it's not healthy weight loss. I'm just not hungry. Just not. It's involuntary starvation is what it is. It's got nothing to do with depression (which I fortunately suffer rarely) that I'm aware of, but maybe it does. My emotions are all over the place lately, but I blame that on lack of sleep. I'm starting to normalize, but it's slow.

I will eat if there's food in front of me, and I'll make myself eat something because I know I'm supposed to, but I'm absolutely not interested in food. My stomach growls sometimes, so I know my body is hungry, but I don't feel it. I don't feel weak from lack of food (I mean, come on, there's TONS of stored energy just waiting to be used there, body, so grab some of that belly fat. Take some from my thighs and butt, too. There's enough there to last for like a year or something. I promise you, you won't starve.), but know I need to eat.

The insomnia is the real bitch. I'm averaging about 4 hours of sleep a day. A day, mind you. That's 20 hours up, 4 hours down. Read that way, it doesn't seem like much, but to me, who is accustomed to 4 hours up, 6 hours down, it's a hell of a swing. Strangely, I'm okay with this too. It's been fantastic for my productivity. I know it won't last, so I make hay while the sun shines, so to speak, or try to anyway.

Speaking of my emotions being all over the place, I am profoundly sad at the moment (just the moment, mind - I don't let things bother me for long). I've recently found out someone I really like has...I don't know how to say this delicately, so I won't be delicate. They found Jesus. They've become one of those "YAY GOD! GOD IS LOVE! GOD RULES! GOD IS IN MY LIFE AND I'M DEDICATING MY LIFE TO HIM YAY GOD! GOD IS LIFE AND ANYTHING NOT GOD ISN'T FOR ME!" people. Now I don't mind if you're religious or faithful or spiritual or whatever you want to call it. I know that faith is a big part of some people's lives (I have my own, and it's personal, and I don't inflict it on my friends and family. If theirs differs from mine, I don't care or take it upon myself to tell them they're wrong, even I believe they may be [which I don't, but that's beside the point]. You get the idea.), but I don't believe in shunning people who once shared your life because they no longer fit in with your idea of what's "right." I know AA does this to people, and rightly so - associating with people from your old (damaging) life can set back your own recovery/addiction, so I understand the theory behind what these people do, but that doesn't make it hurt any less. Someday this person may want to renew ties with those they've left behind, and I hope if that happens those people will allow them in their life again. I'm not certain I will. I'm not big on second chances, because I'm of the opinion that if you sacrificed me once to whatever ideal caught your attention at the time, you'll do it again the next time, and my friendship is not a commodity. It's not expendable or negotiable, and though I am pleased this person found something that makes them happy and gives their life meaning and hope and fills whatever emptiness they had inside them, I'm not going to be put in the position to allow it to happen again. This is something I'd never have expected of this person, and I'm trying to be happy that they're happy, but I'm more angry than anything. I'm also angry at what this means for them. It means they're giving up more than their friends. It means they're turning their back on things they once thought and believed. Or maybe they were always a mean-spirited, bigoted homophobe and have just now found something that will allow them to be a fucktard and hide it behind religion. I don't know. But this blog isn't about that kind of thing. It's about me and how I cope, and I don't need this person in my life to do that.

But I kind of wanted them there.

There are a couple other people I've wanted in my life as this disease progresses, but they're not around for one reason or another. One has passed on, one is afraid of this illness (they won't say it outright, but I understand, and I'm all right with it), one is afraid of what I mean to them so they hide behind obligation so they don't have to offer their support, and yet another has likely been forbidden to associate with me by their spouse because I'm of the opposite gender. I can understand all these. I think they're stupid reasons (except the death one - that one is kind of...uh...not their fault) for not being there for someone you care about, but they're all justifiable and understandable.

I still don't have to like them.

There are times when I feel terribly alone in this fight, but I know I'm not. Rationally I know that. MS isn't a rational illness, and often rationality is the first thing to go when anxiety and such kicks in. I am very, very grateful for my wonderful supportive friends who would never dream of pulling the shit described above. I'm grateful for my family who is there for me and does what they can to understand and adjust to what happens to me. I know this illness is hard on people, and I try to make it easier on them by doing for myself and not complaining when things get hard. I'm not perfect - I never claimed to be, but my family and friends know when I bitch, it's legit and not just the fact that I don't want to cope with my life.

I have every excuse in the world to just sit back and let life pass me by. No one would fault me for it. I'm sick. I'm ill. I have a disease. I'm disabled. However you want to justify it, I could do it, and no one would say anything. They'd pity me and pat me on the head and bring me chocolate and roses.

FUCK THAT. I don't want pity. I will punch people in the face if they look at me, click their tongues and shake their head and say, "Such a shame." When I die (and that's an inevitable side effect of being mortal), I want my epitaph to be, "She was strong." I value strength, and the irony of this fucking bitch of a disease is that it's going to take away everything I value. My strength, my independence, my memories.

But today is not that day. Someday it will happen unless we stop it. There have been great strides in finding the cure for this disorder, but we're not there yet. Someday, hopefully within the next couple years, we'll find the cure. Because I got news for you, people. The clock is ticking, for me and others in my condition. Over half of people with my kind of MS (RRMS) develop a different kind (SPMS) within 10 years of diagnosis, and that's coming up for me. What SPMS means is that there's no relief period. Instead of slipping a little and finding a ledge to hold you for a bit, you simply fall. I'm on the ledge right now, and I've been living with this for going on eight years this year. When BG 12 (linked above) is approved, if I'm fortunate enough to be approved to be on it, it should slow the progression and give me a little more time with what passes for normal for me, but that's all it is. It isn't a cure. It's a stopgap. It's shoring up the ledge with a couple 2X4s so it doesn't crumble beneath me.

I don't know if anyone outside those I've given the link to read this blog, but if they do and you want to contribute to help the cause, my friend is currently seeking sponsors for the MS Walk in May. She's Canadian, so it's goes to the Canadian MS Society, but Americans and other countries can still donate. The donations will go to fund research on MS, and no matter which country kills this thing, we all benefit. So if you can afford a couple dollars, please consider supporting her. You have until May to donate, so if you can't do it this month, think about it between now and then. We'd both really appreciate it.

A lot of people would appreciate it.

Daily Report

As this blog is more about how I'm feeling and how I cope with that, I figured I'd do a little template/format thing so I can get everything I need to in a post before I go on about my day and reaction to it. Part of the purpose of this is to keep a daily record for both myself and my doctor, so I should probably make sure everything I'm supposed to track is included. (Also, should this blog attract regular readers or something, it will also serve as an accountability tool, allowing people to tsk-tsk at me when I'm bad and miss something, deliberately or accidentally.)

So here we go with the template:

Today is Saturday.

Ampyra X
AMVits  X

PM Vits X

Bed Vits - To Be Taken (before bed)

Shot X
Exercise - Saturday. Off.

Water (oz) - So far, about 20, and two cups of tea, one black, one herbal.

Diet - Today I had lunch out. I usually go out on Saturdays and have lunch with some friends. It's a little place with a very health-conscious menu, and they bake their own bread. Today their special was a hummus plate, with freshly-made hummus, artisan bread, kalamata olives, carmelized onions, cucumber, tomato, olive oil and feta cheese. I ordered the small version (you may recall from a previous post that I have very little appetite) and wasn't able to finish it. I also ordered the black tea and a small apple struesel about the size of the palm of my hand.

The above was technically my breakfast even though it was about 2PM. I'm trying to be better about eating something in the actual morning when I get up, but most mornings a cup of tea is about all I can manage.

I've also had a plain roll just now (about 10PM), as my stomach is upset and I don't want to eat anything else to cause gastrointestinal distress. I really don't think my hippy lunch agreed with me. I'm not a vegetarian/vegan, but I have no problem not eating meat. They don't serve any at this place, and I'm okay with that. Their cookies/pastries totally make up for not having bacon or chicken. Mostly.

Activity - Not much. I'm really behind on my housework and other obligations. It was a hard week this week (before this blogging thing), so I'm still playing catchup. As I said, I went out to my weekly gathering today. I have a therapist that comes every two weeks to massage my neck, shoulders, hands and arms (this helps with mobility, circulation and dexterity and is more physical therapy than "massage" like you might think), and they were here today. I did dishes last night, and the few used today. Pretty much it!

Nap - Fragmented. As I had plans for the middle of the day when I'm normally napping, I had to juggle things a bit. I lay down from about 11:30AM to about 1:30PM, then again from about 6:30PM to 9:00PM. I hate late naps, because they mess me up bigtime, but I really needed the rest to function the rest of the evening, so it was unavoidable. Good thing, too, because I woke up nauseated with my stomach hurting. Things are easing off now with medication, so I'm okay. I'll go to bed for the night in a few hours (my usual bedtime is very late, and I get up early). I usually run on a 6/4 hour cycle (down six, up four, sometimes more or less depending on my energy level/the day), so keeping odd hours is normal for me.

Day Rating - I'm going to call today a 3. Not especially difficult, but it's had its moments.

Overall Wellbeing - Mostly okay. Headache today, nausea, GI upset (lunch, I'm sure - too much peace and love in my hummus. I mean garlic.). Hands okay, limbs okay. Slight vertigo once or twice but that's normal for me.

Today I went out. See above. Felt pretty much okay today. No emotional issues (which are a big deal sometimes - anxiety and irrationality chief among them) to report. No overwhelming fatigue. I look forward to my Saturday outings, and plan my day accordingly. I had a good time out today, despite the later stomach upset. No other illness or injury or exciting event to report. I solved a creative problem today that's been nagging at me for months, and it was a simple fix. All I had to do was ask someone who had experience with the same issue and that was that. So that made me happy. Now I need to get to other things, so I'll sign off now.

Ta-da! I blogged! And it didn't take four hours!