And still alive.
No, nothing bad happened to me or my family or anything. I've just been busy with life and things more important than blogging about my unfortunate condition have taken my time.
See, that's the thing about this illness. I have to pick and choose what I spend my energy doing, and there are a lot of times when I have to prioritize. Blogging isn't very high on the priority list when I've got to choose things.
As I said, I've been busy. Nothing specific, and nothing vastly life-altering. Just...you know...life.
Sometimes, it's all I can do to cope with that. Sometimes something as simple as washing the dishes or folding a load of laundry does me in for the rest of the day.
In the time it's been since I last blogged, there have been some 8 days, 9 days, 1 days and 5 days. That's the thing about MS - you never know what kind of day it's going to be. You might wake up feeling like complete shit with a migraine and vertigo, but two hours later you feel ready to gear up with the Avengers.
The reverse is also true. You wake up, bright-eyed and bushy-tailed, and just after you shower and dress you're hit with fatigue like a freight train and have to lay down or fall down. There's no consistency with MS. No certainty.
Except one.
And that certainty is - it's going to get worse.
That certainty frightens some into complete shut down.
I'm not saying that's not frightening, and I'm not saying I'm not afraid. I am.
I just don't let that fear stop me from doing what I want. You can't stop. If you stop, you die. So move. And keep moving.
Other people are moving. Google "MS Walk" and you'll see just how many are moving. All over the world, people are moving, and those who can't move are being moved by others.
Things are happening. Things are changing. They WILL find a cure. They will.
We just have to hang on until they do.
Soon now.
I'll try to get back to blogging regularly, but like I said, MS is a disease of uncertainty, so no promises on that.
As for today, I'm going to call it a 3. I've been good on taking my vitamins (I was off for several weeks there in Feb/March) and am trying to eat better. It's hard sometimes to eat properly when you have so little energy, because not only does convenience replace nutrition, neglect often replaces it as well. Sometimes I just don't have the energy to go make myself something to eat, and other times I know I should eat but don't have the appetite to bother. My family is amazing and looks out for me, but they can't do anything about how little I eat when food is made. I feel bad sometimes when a meal is made and all I manage is a few bites before I just can't eat anymore because I'm either not interested in food or am just literally to tired to eat.
I was reading something today about pregnancy (which I'm not and that's officially no longer possible, thank you) and realized that the symptoms of early pregnancy (like the first four weeks) are very similar to living with something like a junior version of MS. There's constant fatigue, anxiety, mood swings, nausea, headaches, backaches, sensitivity to light and smells...it was uncanny reading it.
So to those women who have been pregnant, remember that time. That's what it's kind of like to live with MS, only times 100.
Ironically, it's said that pregnancy is one of the times a MS patient feels their best. I wouldn't know - as I said, I'm officially out of the gene pool. I was diagnosed young and that only added to my decision (among many other private issues) not to have children.
The last time the flu ran through our household and my husband was spending his fifth day in bed with fatigue and headache, he turned to me and said, "Honey, if this is anything like what you feel every day, I'm sorry."
I smiled and said, "Thank you. And yeah, that's kind of what it's like, only imagine having to get up and go about your day as normal feeling like you do."
He said, "I don't know how you do it. You're the strongest person I know."
I said, "Thanks, baby. Put this under your tongue." (He was running a temp of 103....)
Showing posts with label catch up. Show all posts
Showing posts with label catch up. Show all posts
Friday, April 19, 2013
Thursday, January 10, 2013
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.
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.
Friday, December 21, 2012
Catching Up Is Hard To Do
Okay, so I stole the title of the post from an old song. I'm not exactly creative at the moment.
Anyway, it's been almost a month since I last blogged, and that's not because I haven't been meaning to. Time is a valuable commodity when you have a condition like mine, and as loathe as I am to admit it, blogging just isn't high on my priority list when I have to choose what to spend the little energy/coherence I have on something.
MS affects everyone differently, and I've talked a little before about my primary symptoms. Most prevalent is fatigue (oh, God, is there fatigue!), but there are a few other things that really make my life interesting at times. Those include:
Anxiety (this is a biggie)
Decreased cognitive function (which is a nice way of saying "I can't brain today, I have the dumb"), including memory loss
Clumsiness/decreased dexterity i.e. falling/stumbling
Numbness - usually in the extremities but other times elsewhere
Now, about that memory thing. I have a hard time recalling most things. I can watch a TV series, know I've seen it, but every episode is new to me because I can't remember I've seen it. You get it. Given that, I'll write down what I do remember about this week.
Monday (12/17) - I don't remember much except that I remember I didn't go to the pool for some reason.
Tuesday (12/18) - I went to dinner with a friend. (For the record, I didn't eat anything I hadn't eaten there before, several times over.) It was very nice and I went to the pharmacy afterward to pick up a prescription and something that had never happened to me before happened. (Sensitive viewers please skip this paragraph, as it contains FAR TOO MUCH INFORMATION, but needs to be documented so I can tell my neurologist about it, as it's a new thing/symptom, and I'll need to watch for recurrence.) After I picked up the script, I was doing a little shopping and felt my stomach rumble. I ignored it as I'd just eaten a nice dinner out and was digesting. Then it rumbled a little lower and all of the sudden I needed the bathroom, IMMEDIATELY, or I was going to have an accident. I looked around for one in the drug store and couldn't find one, but I knew there was one at the sandwich chain two doors down. Honestly, I wasn't sure I would make it. I knew there was no way I could make it home - I'd have an accident for certain. I abandoned my shopping card and literally hobbled, lower cheeks clenched tight against anything wanting to move, to the sandwich chain. I barely made it, but I made it. I have NEVER come that close to a bowel accident anywhere, in public or otherwise. Bladder accidents, sure, I've come close. Never have I worried or even experienced a bowel incident like this.
I know bowel and bladder control problems are common with MS, but I've never had to deal with my bowels before. Bladder, yes. I've had a few close calls and even an incident or two that's taught me to carry extra bladder control pads in my purse, but nothing like this. Anyway, that's documented. Moving on!
Wednesday (12/19) - I went to the pool, then ruined my almost full hour of exercise by going out for pancakes afterward. This is important to note because I slipped and fell in the entryway of the restaurant. My cane went flying and I just went down. It was a slip of my pool shoes (this was really the issue here) on the wet floor beside the rugs put down to catch the water (it rains a lot here). I stepped off the rug to make room for my friend behind me, my shoe slipped in some water there and down I went. No injuries, though, beyond a bruised and scraped knee. Everything else was okay. A nice stranger offered her hand to help me up, but I waved her off and got up on my own. I found my cane and went and had breakfast. Before we ordered I went to the bathroom and checked myself out. I washed the knee and hands and cane and went back to my table. I carry a small first aid kit in my purse (look, you learn to do this after awhile with this condition, and should have one anyway whether or not you have MS) and hand sanitizer (alcohol 60%). I sanitized the scraped knee, took an ibuprofen (which I also carry) and put a bandage over it. Then I sanitized my hands and went on with my breakfast.
Yeah, the knee hurt. It still does. I banged it good. But nothing else was hurt or damaged, and I'm okay with that. The restaurant staff was concerned also, but I waved them off and told them I was fine. I spoke to my husband and assured him I was all right and didn't need the hospital. (The first fall I had before I was officially diagnosed I unknowingly broke my tibia and fibula. I didn't go to the hospital and ended up mentioning to my family doctor that it still hurt 10 months after the fact. He took an x-ray and told me it was an old, healed fracture. So I break my leg and walk around on it for 10 months. Go me. Hello, high tolerance for pain! So we're a little more careful now.) I'm fine. It was my patella/kneecap proper that got banged, not anywhere else hurt or scraped. Just a bruise is all. I'll heal. It could have been a lot worse. Side note: I really need to both cut and paint my toenails. I was wearing pool shoes and my toes aren't all that attractive. Imagine if I'd hurt my foot! Then people would have been looking at my ugly toes with nails in need of clipping. (I may have my priorities out of order.) Moving on!
Thursday (12/20) - Here's the part where it gets interesting. All this week I've had anxiety issues, and Thursday was hard. I took the day completely off. I stayed in bed until 1PM, then got up and spent the rest of the day watching movies on the couch, surrounded by my pets with my husband close by. It was a very anxious day and I needed my family close. I had a hard time moving - my limbs were clumsy and heavy - and just stayed down as much as I could. My husband is always attentive and understanding when I have "a hard day," and he kept me well-stocked with things to eat and the DVD player going. He's an awesome guy, my husband. I noticed as I was getting ready for bed that my neck and chest were numb/less sensitive than they usually were, but I shrugged and just chalked it up to another symptom in this bad patch. I went to bed about midnight (remember I'd slept until 1PM and hadn't laid back down for a nap, so I'd been up about 12 hours - a feat for me) and slept until this morning.
Friday (12/21) - THE APOCALYPSE HAS...wait, no it hasn't. Huh. The world didn't end, and the sun rose in the East and everything, and I was feeling okay. Mostly. I mean, I could get out of bed, which is more than a lot of people, so I did that. I fed my animals and got the day started as normal in our house. I was still very lethargic and didn't get to the errands I meant to get to all this week.
I went out to dinner again tonight, by myself. On purpose. I just needed to get out of the house, but my anxiety nearly stopped me. I stood in front of the door for five minutes, coat and hat on, keys in hand, ready to go, but anxiety reared its ugly head, saying things like, "Don't go! What if the house burns down while you're out? And you're not here to save the animals? What if someone breaks in because they see no cars in the drive? What if-"
Anxiety tries hard to make me its' bitch sometimes, and I take exception to that. Sometimes I don't want to take the little white pill my doctor gives me for those times to make it go away. Sometimes I just want to live my life and to hell with what that bullshit does to me. So I ignored it, grabbed my purse and left. Fuck it!
And you know what? It was fine. I had a nice dinner, a glass of wine, a nice dessert, some tea with it, and the house didn't burn down. I didn't get a flat tire. No one broke in. Everything was just fine. For the first time all week, I felt like everything was okay.
As I said, this week has been hard. Anxiety issues (I think the upcoming holiday is partly to blame; I may be stressing slightly), hard days, etc. I have a lot to catch up on, and catching up when you have MS is hard. The trick is not to get behind in the first place, but the smallest thing can set off a chain reaction that wrecks everything you've spent time arranging. The limited energy I have becomes even more of a valuable commodity, so things get shoved back and pushed aside to make room for the things I am able to accomplish.
Fortunately my family and friends are understanding (for the most part - there are a few people who are intimidated by my condition and aren't sure how to treat me, but they're learning) about things, so if I'm a little (or a lot) late for things, they understand.
Like my holiday fudge. I planned on making some on Wednesday, but things got a little out of hand and I ended up taking it easy. The fall didn't hurt me physically all that much, but mentally and emotionally it shook me up. Blunt reminders of my condition don't sit well with me. They make me angry more often than not, because I try so hard to live as normal a life as possible. I already do so much to compensate for this disease that when I'm, quite literally, knocked on my ass, I tend to resent it.
But what else is there to do about it? I can't sit down and cry and lament "why me?" because it's not going away. I can either cope or give up, and I'm not the kind to give up because I've had a little setback.
The "little setbacks" are going to become more frequent and more difficult, and that's just a fact. (Unless they cure this shit, which they might.) I might as well get used to it.
And gather my ingredients to make fudge tomorrow.
Anyway, it's been almost a month since I last blogged, and that's not because I haven't been meaning to. Time is a valuable commodity when you have a condition like mine, and as loathe as I am to admit it, blogging just isn't high on my priority list when I have to choose what to spend the little energy/coherence I have on something.
MS affects everyone differently, and I've talked a little before about my primary symptoms. Most prevalent is fatigue (oh, God, is there fatigue!), but there are a few other things that really make my life interesting at times. Those include:
Anxiety (this is a biggie)
Decreased cognitive function (which is a nice way of saying "I can't brain today, I have the dumb"), including memory loss
Clumsiness/decreased dexterity i.e. falling/stumbling
Numbness - usually in the extremities but other times elsewhere
Now, about that memory thing. I have a hard time recalling most things. I can watch a TV series, know I've seen it, but every episode is new to me because I can't remember I've seen it. You get it. Given that, I'll write down what I do remember about this week.
Monday (12/17) - I don't remember much except that I remember I didn't go to the pool for some reason.
Tuesday (12/18) - I went to dinner with a friend. (For the record, I didn't eat anything I hadn't eaten there before, several times over.) It was very nice and I went to the pharmacy afterward to pick up a prescription and something that had never happened to me before happened. (Sensitive viewers please skip this paragraph, as it contains FAR TOO MUCH INFORMATION, but needs to be documented so I can tell my neurologist about it, as it's a new thing/symptom, and I'll need to watch for recurrence.) After I picked up the script, I was doing a little shopping and felt my stomach rumble. I ignored it as I'd just eaten a nice dinner out and was digesting. Then it rumbled a little lower and all of the sudden I needed the bathroom, IMMEDIATELY, or I was going to have an accident. I looked around for one in the drug store and couldn't find one, but I knew there was one at the sandwich chain two doors down. Honestly, I wasn't sure I would make it. I knew there was no way I could make it home - I'd have an accident for certain. I abandoned my shopping card and literally hobbled, lower cheeks clenched tight against anything wanting to move, to the sandwich chain. I barely made it, but I made it. I have NEVER come that close to a bowel accident anywhere, in public or otherwise. Bladder accidents, sure, I've come close. Never have I worried or even experienced a bowel incident like this.
I know bowel and bladder control problems are common with MS, but I've never had to deal with my bowels before. Bladder, yes. I've had a few close calls and even an incident or two that's taught me to carry extra bladder control pads in my purse, but nothing like this. Anyway, that's documented. Moving on!
Wednesday (12/19) - I went to the pool, then ruined my almost full hour of exercise by going out for pancakes afterward. This is important to note because I slipped and fell in the entryway of the restaurant. My cane went flying and I just went down. It was a slip of my pool shoes (this was really the issue here) on the wet floor beside the rugs put down to catch the water (it rains a lot here). I stepped off the rug to make room for my friend behind me, my shoe slipped in some water there and down I went. No injuries, though, beyond a bruised and scraped knee. Everything else was okay. A nice stranger offered her hand to help me up, but I waved her off and got up on my own. I found my cane and went and had breakfast. Before we ordered I went to the bathroom and checked myself out. I washed the knee and hands and cane and went back to my table. I carry a small first aid kit in my purse (look, you learn to do this after awhile with this condition, and should have one anyway whether or not you have MS) and hand sanitizer (alcohol 60%). I sanitized the scraped knee, took an ibuprofen (which I also carry) and put a bandage over it. Then I sanitized my hands and went on with my breakfast.
Yeah, the knee hurt. It still does. I banged it good. But nothing else was hurt or damaged, and I'm okay with that. The restaurant staff was concerned also, but I waved them off and told them I was fine. I spoke to my husband and assured him I was all right and didn't need the hospital. (The first fall I had before I was officially diagnosed I unknowingly broke my tibia and fibula. I didn't go to the hospital and ended up mentioning to my family doctor that it still hurt 10 months after the fact. He took an x-ray and told me it was an old, healed fracture. So I break my leg and walk around on it for 10 months. Go me. Hello, high tolerance for pain! So we're a little more careful now.) I'm fine. It was my patella/kneecap proper that got banged, not anywhere else hurt or scraped. Just a bruise is all. I'll heal. It could have been a lot worse. Side note: I really need to both cut and paint my toenails. I was wearing pool shoes and my toes aren't all that attractive. Imagine if I'd hurt my foot! Then people would have been looking at my ugly toes with nails in need of clipping. (I may have my priorities out of order.) Moving on!
Thursday (12/20) - Here's the part where it gets interesting. All this week I've had anxiety issues, and Thursday was hard. I took the day completely off. I stayed in bed until 1PM, then got up and spent the rest of the day watching movies on the couch, surrounded by my pets with my husband close by. It was a very anxious day and I needed my family close. I had a hard time moving - my limbs were clumsy and heavy - and just stayed down as much as I could. My husband is always attentive and understanding when I have "a hard day," and he kept me well-stocked with things to eat and the DVD player going. He's an awesome guy, my husband. I noticed as I was getting ready for bed that my neck and chest were numb/less sensitive than they usually were, but I shrugged and just chalked it up to another symptom in this bad patch. I went to bed about midnight (remember I'd slept until 1PM and hadn't laid back down for a nap, so I'd been up about 12 hours - a feat for me) and slept until this morning.
Friday (12/21) - THE APOCALYPSE HAS...wait, no it hasn't. Huh. The world didn't end, and the sun rose in the East and everything, and I was feeling okay. Mostly. I mean, I could get out of bed, which is more than a lot of people, so I did that. I fed my animals and got the day started as normal in our house. I was still very lethargic and didn't get to the errands I meant to get to all this week.
I went out to dinner again tonight, by myself. On purpose. I just needed to get out of the house, but my anxiety nearly stopped me. I stood in front of the door for five minutes, coat and hat on, keys in hand, ready to go, but anxiety reared its ugly head, saying things like, "Don't go! What if the house burns down while you're out? And you're not here to save the animals? What if someone breaks in because they see no cars in the drive? What if-"
Anxiety tries hard to make me its' bitch sometimes, and I take exception to that. Sometimes I don't want to take the little white pill my doctor gives me for those times to make it go away. Sometimes I just want to live my life and to hell with what that bullshit does to me. So I ignored it, grabbed my purse and left. Fuck it!
And you know what? It was fine. I had a nice dinner, a glass of wine, a nice dessert, some tea with it, and the house didn't burn down. I didn't get a flat tire. No one broke in. Everything was just fine. For the first time all week, I felt like everything was okay.
As I said, this week has been hard. Anxiety issues (I think the upcoming holiday is partly to blame; I may be stressing slightly), hard days, etc. I have a lot to catch up on, and catching up when you have MS is hard. The trick is not to get behind in the first place, but the smallest thing can set off a chain reaction that wrecks everything you've spent time arranging. The limited energy I have becomes even more of a valuable commodity, so things get shoved back and pushed aside to make room for the things I am able to accomplish.
Fortunately my family and friends are understanding (for the most part - there are a few people who are intimidated by my condition and aren't sure how to treat me, but they're learning) about things, so if I'm a little (or a lot) late for things, they understand.
Like my holiday fudge. I planned on making some on Wednesday, but things got a little out of hand and I ended up taking it easy. The fall didn't hurt me physically all that much, but mentally and emotionally it shook me up. Blunt reminders of my condition don't sit well with me. They make me angry more often than not, because I try so hard to live as normal a life as possible. I already do so much to compensate for this disease that when I'm, quite literally, knocked on my ass, I tend to resent it.
But what else is there to do about it? I can't sit down and cry and lament "why me?" because it's not going away. I can either cope or give up, and I'm not the kind to give up because I've had a little setback.
The "little setbacks" are going to become more frequent and more difficult, and that's just a fact. (Unless they cure this shit, which they might.) I might as well get used to it.
And gather my ingredients to make fudge tomorrow.
Sunday, November 11, 2012
Technical Difficulties and Catching Up
It's been a few days since I posted. They've been mostly good days, what I can remember of them. I got a lot done (mostly cleaning and organizing). Missed a lot of vitamins and meds and so on. It's been a little busy around here. There's been some technical failures and we had to replace my laptop with another setup. There's been some weather (but nothing like they've had in the Eastern US - thoughts are with you all!), and there's been some appointments and other commitments, but I hope to be back on track now.
My schedule has been thrown into chaos, and I'm trying to get back to it. The thing about my schedule is it's tentative at best, and the domino effect rules it. I miss one thing, it knocks the rest out of synch, and sometimes it takes me days to get everything set back up again.
Let's see. My last blog was Monday. I had that migraine. I did make notes. I have a physical checklist that I use to help me remember what I did and didn't take/do that I use to help me update this blog, so even if I didn't post I still have a record. This blog is mostly a place for me to talk about how my illness affects me and help me remember what the day was actually like. My checklist doesn't do that.
According to my checklist, I did go to the pool Wednesday and Friday. I know I've eaten horribly this week. Sometimes for me it's more about convenience than nutrition, and that's not really helpful at all. I try to keep junk food to a minimum. I eat mostly healthy, but there are times when pizza features too prominently in my diet. This week was one of those times. See the part about being busy.
When I wasn't busy with tidying, I was out getting things I needed to help fix my technical problems. It looks like that was mostly done on Tuesday and Thursday.
I've been sleeping a lot. This happens when my schedule is off. Everything gets thrown into disarray and my patterns are disturbed. I end up staying up far too late and getting up way too early, then getting tired and going back to sleep at times that just exacerbate the issue. Also, I've been pushing hard lately getting things done and going out to appointments and commitments (a friend had a birthday and so on) that I've worn myself out. I need to dial it back and get things under control. With the holidays coming up it's going to get harder. I've agreed to pet-sit for a friend while she's away for Thanksgiving next week, so we'll see how that goes.
So despite not blogging, I have been getting things done. I've had some decent energy, which is likely why I've been doing so much (make hay while the sun shines and all that!), but that's a double-edged sword. I feel good, I do more, it wears me out, I sleep more, get up with energy, do more...you get it. Overall this week has been pretty good, despite missing vitamins and meds and such. I'm trying to reset now.
I have an appointment with my doctor this week. He's going to do some bloodwork and check other things out. I hope to have a daily report post tonight, but with the way things have gone lately, I'm not sure that's going to happen. We'll see.
Until later!
My schedule has been thrown into chaos, and I'm trying to get back to it. The thing about my schedule is it's tentative at best, and the domino effect rules it. I miss one thing, it knocks the rest out of synch, and sometimes it takes me days to get everything set back up again.
Let's see. My last blog was Monday. I had that migraine. I did make notes. I have a physical checklist that I use to help me remember what I did and didn't take/do that I use to help me update this blog, so even if I didn't post I still have a record. This blog is mostly a place for me to talk about how my illness affects me and help me remember what the day was actually like. My checklist doesn't do that.
According to my checklist, I did go to the pool Wednesday and Friday. I know I've eaten horribly this week. Sometimes for me it's more about convenience than nutrition, and that's not really helpful at all. I try to keep junk food to a minimum. I eat mostly healthy, but there are times when pizza features too prominently in my diet. This week was one of those times. See the part about being busy.
When I wasn't busy with tidying, I was out getting things I needed to help fix my technical problems. It looks like that was mostly done on Tuesday and Thursday.
I've been sleeping a lot. This happens when my schedule is off. Everything gets thrown into disarray and my patterns are disturbed. I end up staying up far too late and getting up way too early, then getting tired and going back to sleep at times that just exacerbate the issue. Also, I've been pushing hard lately getting things done and going out to appointments and commitments (a friend had a birthday and so on) that I've worn myself out. I need to dial it back and get things under control. With the holidays coming up it's going to get harder. I've agreed to pet-sit for a friend while she's away for Thanksgiving next week, so we'll see how that goes.
So despite not blogging, I have been getting things done. I've had some decent energy, which is likely why I've been doing so much (make hay while the sun shines and all that!), but that's a double-edged sword. I feel good, I do more, it wears me out, I sleep more, get up with energy, do more...you get it. Overall this week has been pretty good, despite missing vitamins and meds and such. I'm trying to reset now.
I have an appointment with my doctor this week. He's going to do some bloodwork and check other things out. I hope to have a daily report post tonight, but with the way things have gone lately, I'm not sure that's going to happen. We'll see.
Until later!
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