I've been really under the weather the past few days. A couple of weeks, actually. I've had a cold, which being me turned into something of long duration. I've missed meds, vits, and shots. I'm not taking anything right now but things that will help me get better, and the shots suppress my immune system. Not exactly the best thing to take when you're trying to get over a bad cold. I had a fever the other day (I think it was day before yesterday) of 100.7, but that's where it spiked and I'm over it now.
Now it's just tea and cold meds. Lots of both. Once I'm back to what counts as normal for me, I'll start back on the vitamins and shots and pool and so on. I haven't exercised for a couple weeks and don't intend to go back to the pool until the first week of December. It's just too much to do with the holidays and other obligations.
Speaking of, while I've cancelled most of my obligations due to illness, there are still certain things I have to tend to. These exacerbate my illness, but can't be helped. The last one will be over next Wednesday. Hopefully I'll be properly healed up by then, but I know I'll still need several days to just relax and recover, and get back to what passes for normalcy around here.
I did recently learn an interesting fact about my illness. I'm sure I was aware of it at some point, but either forgot it or didn't realize the full meaning of "degenerative," but I've become aware of the fact that there's a 50% chance I'll develop a type of MS known as "secondary-progressive" within the next 4 years. That increases as the years go by. 90% of people with my type of MS (currently "relapsing-remitting") develop it within 25 years. I've had this now for 6. Kind of scary, there.
But, I also learned there's been progress made on curing this thing. It's only been shown in mice, but scientists have been able to trick the immune system into accepting myelin (the covering over the nerve fibers that MS attacks), effectively stopping MS. I hesitate to use the word "cure," but it's hopeful.
Someday, we'll beat this illness. I just hope it happens in my lifetime. As MS is related to other degenerative neurological diseases, once we are able to cure one, there's hope for the others, like Parkinson's and Alzheimer's.
There's always hope.
Saturday, November 24, 2012
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!
Monday, November 5, 2012
Daily Report
I promise this blog will get more interesting as I get more used to blogging regularly. For now, though, have a daily report. This is getting old fast. Not the blogging part, but the checklist/taking care of myself part. There's a reason I'm neglectful. Between my vitamins and prescription medications, I take 15 pills plus an injection every single day. It's a full time job, just functioning daily. Even something as simple as taking a shower is an effort I don't want to spend the energy on half the time. It sounds gross, I know, but the effort it takes me to shower, even with the shower chair there to make things easier sometimes just isn't worth it. I try to take my shower just before I lie down because it seriously exhausts me, but sometimes that's just not possible. Sometimes I'm just too fucking tired to manage a shower and barely manage to drag my ass into bed to collapse.
But that's neither here nor there. I managed a shower today, which is what brought it to mind. More about that in the "Today I" section. Here we go.
Water (oz) half a liter, plus two cups of tea, one black, one green
But that's neither here nor there. I managed a shower today, which is what brought it to mind. More about that in the "Today I" section. Here we go.
Today is Monday.
Ampyra X
AMVits X
PM Vits X
Bed Vits X
Shot X
(Check it out! All stars! Well, x's anyway! I call that a win!)
Exercise No pool today like I usually do on Mondays. I'm really still recovering from yesterday's migraine and I didn't think it was a good idea to push my limits this morning trying to make it half a mile in the water. I vacuumed the living room. (Yes, it counts as exercise for me.)
Water (oz) half a liter, plus two cups of tea, one black, one green
Diet I actually made myself two smoothie drinks today. I use what's called a Nutribullet and made two shakes today. I also had a ham and pickle sandwich (on bakery white bread, which isn't good for me, but it's what we had), some almonds, a few Lay's potato chips (what can I say? I like them and only eat a handful every now and then), and four fruit leather strips. I'm proud of myself. I actually managed to get some nutrition in today. This is kind of important for me, seeing as how I don't eat as well or as much as I should. The shakes really help and I need to keep up making them.
Activity - I went out today. My animals all had veterinary appointments, so that was an outing. It took about an hour and a half. I managed a shower before we left. I also vacuumed the living room and did the dishes. My bathroom really needs cleaning, but I haven't had the energy. Maybe tomorrow.
Nap I laid down after taking the animals to their appointment and eating my lunch, about 1:15PM. I got up about 5PM to feed everyone again.
Day Rating - Today was a good day. I'm going to call it a 1.
Overall Wellbeing -
See what I mean about MS being a real bitch? Yesterday I was in bed all day with a migraine. It was an 8 day. Today? 1. I'm all over the place sometimes.
See what I mean about MS being a real bitch? Yesterday I was in bed all day with a migraine. It was an 8 day. Today? 1. I'm all over the place sometimes.
Today I decided that the "Today I" section is pretty much pointless. I think this will be the last bit of it. I talk about my day in other places, so this is kind of just extra. I'll leave it out from now on.
Time for bed now.
Sunday, November 4, 2012
Daily Report
Today is Sunday.
Ampyra X
AMVits X
PM Vits --
Bed Vits X
Shot X
Exercise - Sunday. Off. Besides that, migraine.
Water (oz) approximately 1.5L or 52 oz
Diet - Three small pieces of a Newman's Own pepperoni pizza, a multigrain English muffin with butter and homemade cranberry-orange jam (no HFCS), a glass of milk and 1/2 cup of Main St. Bistro Yukon Gold mashed potatoes.
Activity - Virtually nil. I stayed in bed the majority of the day given my migraine.
Nap - All day due to painkillers and migraine.
Day Rating - I'm calling this one an 8.
Overall Wellbeing - Migraine. Woke up with it. Photosensitivity.
Today I was awakened "early" by the animals for breakfast. Pets don't understand Daylight Savings Time. Woke up with a migraine. I was diagnosed with this lovely symptom of my condition earlier this year. Migraine comes in various forms, and I was unfamiliar with the type MS can bring on. Today was a motherfucker of a day for pain. As you may recall from my previous days' blog entries, I've had headaches for the past two days, and they've been kept under relative control with ibuprofen. Today, no such luck. After two doses of ibuprofen, I gave in and took one of my carefully hoarded painkillers. I hate taking pills of any kind, and painkillers more than anything. They make me stupid, make me feel quite literally drugged, give me cotton-mouth and make everything feel wrapped in cotton. I took one, stayed up until I couldn't stand it anymore, then went back to bed. I got up about 9:30PM to eat something. Though I hate taking pain pills, it worked, and I'm grateful despite having to put up with the effects of it. I have a last-resort medication called sumatriptan that is supposed to kill a migraine, but I don't want to use them unless I have no other choice. I have a limited supply of them and want to save them for the most dire of circumstances. I've never taken one before, and I'm not certain how they'll affect me. I'm not taking them until I absolutely must.
I'm supposed to go to the pool in the morning, but given my medication hangover and need to recover, I doubt that's going to happen. We'll see. More tomorrow.
I'm supposed to go to the pool in the morning, but given my medication hangover and need to recover, I doubt that's going to happen. We'll see. More tomorrow.
Saturday, November 3, 2012
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:
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.
So here we go with the template:
Today is Saturday.
Ampyra X
AMVits X
AMVits X
PM Vits X
Bed Vits - To Be Taken (before bed)
Shot X
Exercise - Saturday. Off.
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.
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!
Ta-da! I blogged! And it didn't take four hours!
Friday, November 2, 2012
So It Begins
Okay, I give.
This blog, in case you haven't realized it by now, is about my unfortunate medical condition. I have Multiple Sclerosis. If you're not familiar with MS, it's a degenerative neurological disorder related to Alzheimer's and Parkinson's Disease. In a nutshell, my immune system hasn't got anything better to do and thinks that the protein sheath covering the nerve fibers in my brain is the enemy, so it attacks it. When it does, it makes little scars on the sheath and the signals between those cells can't get through.
Think of it like an insulated wire, like for your cable box. Outside it has a thick black cover to protect what's inside it. If you take a knife and strip that covering off, you expose the wires it protects and they either break or get damaged. That's what MS does to my nervous system.
I could go into detail about what it is and how it works, but if you're curious about all that, others have written about it in better ways. Go here and have a look around. This isn't a scientific or technical blog. This is a blog about what it's like living with MS. I haven't looked, but I'm sure there are hundreds or maybe even thousands of blogs out there written by people dealing with their various illnesses. Add this one to the list.
Why am I writing this? Because my neurologist says I should. Also, it will help me have a record of my days, abilities, symptoms and events. MS affects memory, so it will help keep track of things in that regard. MS is also degenerative, so what I'm able to do now, I might not be able to do a year from now. You get it.
Also, maybe really, deep down, I wanted a place to vent and talk about what's happening to me. I don't talk much about my condition to anyone - not even my family, relatives or closest friends. Stuff happens and sometimes it's scary.
Sometimes, I'm scared. But it's okay. I cope with that. And when coping gets a little too difficult, my doctor gave me nice little happy pills that make coping a little easier.
I tried the paper journal thing and I could never remember to update it. Here I have a blog and can set reminders to myself to update and so on.
Let's start this blog off with me and my day today:
Me: I'm a small person, Caucasian female of Irish descent. Textbook profile of "who is the most common person to get MS." While not obese, I could stand to lose about 20 pounds, and I'm working on that. My current weight is stubbornly hovering about 158, and I'm trying desperately to get down to 150 by the middle of the month. I have an arrangement with my doctor that I'd do so (an arrangement made 3 months ago) and I'm kind of slacking on my end. What? A lot happened in those three months!
I also have textbook, bog-standard relapsing-remitting Multiple Sclerosis. For once in my life I've done something NORMAL. "MS is normal?" you say. Yes. For me, yes, this is. There are four different types of MS, ranging from "you'll be dead in a year" to "barring accident or other injury or illness like cancer, you have a standard life expectancy for your gender."
It takes about a year to properly diagnose MS, and that can be (and was) a very scary and uncertain time. The symptoms of MS are vague and often taken for other things. I was misdiagnosed three times before someone convinced me to try "one last doctor." One thing you'll get to know about me (provided you don't already know me and are following this blog) is that I'm pretty resilient/stubborn/don't put up with shit, and I was tired of doctors by this point. One even referred me to a psychiatrist because he, to put it lightly, thought I was crazy and suffering from some sort of female stress issue. (So he was a sexist asshole. Oh, yeah, I should probably mention this blog will have cursing. Sorry! NSFW or whatever! I saw him only twice. He was an incompetent twit.)
So anyway, one last doctor. I went, told him my symptoms, then told him I was ready to be referred to the psychiatrist as I was clearly crazy. He just looked at me and said, "I think you have MS. Let's get you an MRI."
A year or so (and many tests and pokes and prods) later, it was confirmed. The details aren't all that important. Suffice to say I'd been suffering the various symptoms of MS for a few years by then. It was what's called a "relapse" that sent me (finally - I told you I was stubborn!) to the doctor. I was young, healthy, in great shape (a kickboxer/bodybuilder) - I shouldn't have been having the symptoms I was. I had a background in gymnastics, etc. I knew how my body worked and it wasn't working the way it was supposed to. La la la.
Medications I take for my MS include Copaxone (a daily injection), several dietary supplements like vitamins and fish oil, and a mobility drug called Ampyra that I'm supposed to be taking and forget more often than not. But this blog should change all that.
In theory I should be updating this blog daily with something like this -
- along with my diet (or lack thereof - one of my symptoms is anorexia. Not THAT kind - it means "loss of appetite." It comes and goes.)
Anyway, that's me. Now about my day:
Today. Ugh. It was a hard day today. I think I'll rank my days from 1-10. 1 being an easy day ("easy" for me) and 10 being one bloody fuck-all of a day (hopefully these will be rare.) I'm going to say today was a 7.
Today I skipped my shot. I know, I'm horrid, but I don't like doing that before going to the pool, and as you can see below, I got busy after, so I forgot about it. I've taken my AM vits and will take my Bedtime vits. I missed the midday ones (bad me, this happens a lot). No Ampyra. (Again, bad me.) Exercise was the pool (see below). I'm not sure how much water I've had today, but I think it's been somewhere about 20oz. I'm trying to get up to 1 liter. Today I have eaten a sloppy joe (made last night), a few Lay's potato chips, two fruit leather strips, a small piece of the Bread of the Dead I made (see below) and a piece of lemon meringue pie a friend sent over to me. (I have awesome friends!) I sent some of the bread over to her, so fair trade in my opinion.
Today I got up and went to the pool. My local gym has a therapy pool that's about 4' deep and has a deeper area for aerobic-type exercise with a shallower trench-type thing called a lazy river that has a current running through it. The lazy river is designed for walking either with or against the current, and depending on my day I do one or the other. I try to get to the pool at least three times a week - Monday, Wednesday and Friday. My goal is to be up to 6 miles in a year. 52 laps around the pool (walking, remember) is a mile. I did a mile today. I bought some pool shoes yesterday and they really help with my stability. So does the water. Normally I'm worn out by half a mile, so a mile is a big feat for me, but today I just kept on trucking. I have some friends who go with me most days, but today I was alone for the first half-mile. A friend kept me company the last half, which really helps.
I did my workout and showered there (a feat in itself, given my difficulty showering, but they have disability-accessible things there so it works out okay), then came home and headed out with my husband to do some errands. Once those were finished, I came home and put the things away that we'd gotten out on our errands. This took me a good hour or so, because I had to do some sorting and cleaning to make room for things (one of which was a new microwave, as ours had died suddenly). Then I made myself some lunch and took a nap. I laid down about 2PM (errands and cleaning, remember?), only to get back up about 4:45 because I was expecting someone. (They weren't able to come by, but that's been rescheduled for tomorrow afternoon, and will probably continue to be on Saturdays.) So I didn't get much of a nap today.
That's something else. With my condition being what it is, schedule/routine is very important to me. It helps me cope with my day and plan my energy use. The energy I have for things is very limited and has to be delegated out, and I jealously guard what little I have for things. If I know I need to do errands on a certain day, I have to plan that. More about that another time.
So, part of my schedule is that I usually lie down about 11 and get up about 5. I know this sounds cool - "Dude, you get to nap all day!"
Uh, no.
No, no, no. I don't GET TO nap. I HAVE TO nap. If I don't, I have no energy for anything else. Also, it's not a nap like you think. Fatigue (which is one of my primary symptoms) isn't being tired or sleepy or worn out. An article I read on the subject says it best: I rarely wake in the morning feeling rested - but more like I have run a marathon with a bout of heavy flu, particularly if my sleep has been disturbed. Fatigue is not another word for tiredness. It is a total shutting down of the mind and body - a barrier comes down past which you cannot move on. It puts everything I plan to do under threat.
So when I say, "I didn't get much of a nap today," it's important. Not getting much of a nap affects my entire day. Sometimes more than one. Sometimes a week. It just depends.
After I got up, I fed my animals and started on a recipe for making Pan de los Muertos, or Bread of the Dead, in celebration of Dia de los Muertos today. It's a long recipe that takes hours, and really, really taxed what little energy I had left. Actually I was surprised at the energy I had today. Maybe going to the pool is starting to have a positive affect on my energy level. Anyway, I'm not able to knead dough like I used to and even though I used a big KitchenAid mixer to help, I still had to do some kneading by hand. I wore myself out and gave myself a headache, but I took some ibuprofen and carried on. The bread got baked and it tasted awesome, thanks for asking. In between letting the bread dough rise and baking it and making the glaze and tidying up the kitchen, I made this blog. An awesome friend made the gorgeous header.
It sounds like I did a lot today, but honestly, it's kind of a "make hay while the sun shines" thing. I have to get a lot done when I can because who knows when I'll be knocked on my ass next, or how long it will last when I am. And I will be. There's no doubt about that. To quote that cheesy movie Armageddon (I love, I know), "It's happened before. It will happen again. It's just a question of when."
Also, time management has never been so crucial in my life. I do the dishes while waiting for my tea to brew, and I try and do them every time a dish is used. It helps me keep things clean and done, because I honestly don't know from one day to the next if my hands are going to feel like cooperating that day. Today, as I said, was a hard day, not the least of which was because my hands aren't at their best today. They're shaky and weak and typing is hard and slow right now. (This blog post alone has taken me about four hours off and on.)
Another great article on the subject is this one about what it's like living with a hidden illness.
Outside, I look fine. Only a few people know I have this condition. As I said, it's not something I talk about. Not because I'm ashamed of having it, but because a) there's nothing to be done about it, b) I don't want pity or sympathy, c) I don't want people to see my condition and not me d) I don't want people to treat me like I'm a fragile little flower.
There's a saying by the great philosopher Denis Leary: "Life sucks, get a fuckin' helmet." That's pretty much how I cope with my issues. Yeah, MS sucks, but it's not going to stop me from living.
It's just going to dictate how I do it.
But I'm a defiant little bitch. For everything this condition throws at me, I'll find a way around it. I'll work through it. Get past it. Until I can't breathe. Yeah, that could happen. I could go to sleep tonight and not wake up in the morning because my MS decided to cut the wire from my brain to my lungs and I stop breathing. So what? It could happen to anyone, and I'm not going to let that fear run my life.
Fear is the mind-killer, people.
I should probably shut up now, as this is already an essay. I'll close by explaining the name of this blog, Stasis Interrupted.
It comes from the cheesy CGI movie ALIEN3. I love the ALIEN movies and it comes from the computer giving a warning about the cryogenic hypersleep stasis being interrupted by a fire. That's pretty much what happened to me. Here I was, going on about my life and business, when a fire interrupted my stasis.
Stasis can also mean "equilibrium" or "poise." MS is interrupting that, too.
So there you have it.
This blog, in case you haven't realized it by now, is about my unfortunate medical condition. I have Multiple Sclerosis. If you're not familiar with MS, it's a degenerative neurological disorder related to Alzheimer's and Parkinson's Disease. In a nutshell, my immune system hasn't got anything better to do and thinks that the protein sheath covering the nerve fibers in my brain is the enemy, so it attacks it. When it does, it makes little scars on the sheath and the signals between those cells can't get through.
Think of it like an insulated wire, like for your cable box. Outside it has a thick black cover to protect what's inside it. If you take a knife and strip that covering off, you expose the wires it protects and they either break or get damaged. That's what MS does to my nervous system.
I could go into detail about what it is and how it works, but if you're curious about all that, others have written about it in better ways. Go here and have a look around. This isn't a scientific or technical blog. This is a blog about what it's like living with MS. I haven't looked, but I'm sure there are hundreds or maybe even thousands of blogs out there written by people dealing with their various illnesses. Add this one to the list.
Why am I writing this? Because my neurologist says I should. Also, it will help me have a record of my days, abilities, symptoms and events. MS affects memory, so it will help keep track of things in that regard. MS is also degenerative, so what I'm able to do now, I might not be able to do a year from now. You get it.
Also, maybe really, deep down, I wanted a place to vent and talk about what's happening to me. I don't talk much about my condition to anyone - not even my family, relatives or closest friends. Stuff happens and sometimes it's scary.
Sometimes, I'm scared. But it's okay. I cope with that. And when coping gets a little too difficult, my doctor gave me nice little happy pills that make coping a little easier.
I tried the paper journal thing and I could never remember to update it. Here I have a blog and can set reminders to myself to update and so on.
Let's start this blog off with me and my day today:
Me: I'm a small person, Caucasian female of Irish descent. Textbook profile of "who is the most common person to get MS." While not obese, I could stand to lose about 20 pounds, and I'm working on that. My current weight is stubbornly hovering about 158, and I'm trying desperately to get down to 150 by the middle of the month. I have an arrangement with my doctor that I'd do so (an arrangement made 3 months ago) and I'm kind of slacking on my end. What? A lot happened in those three months!
I also have textbook, bog-standard relapsing-remitting Multiple Sclerosis. For once in my life I've done something NORMAL. "MS is normal?" you say. Yes. For me, yes, this is. There are four different types of MS, ranging from "you'll be dead in a year" to "barring accident or other injury or illness like cancer, you have a standard life expectancy for your gender."
It takes about a year to properly diagnose MS, and that can be (and was) a very scary and uncertain time. The symptoms of MS are vague and often taken for other things. I was misdiagnosed three times before someone convinced me to try "one last doctor." One thing you'll get to know about me (provided you don't already know me and are following this blog) is that I'm pretty resilient/stubborn/don't put up with shit, and I was tired of doctors by this point. One even referred me to a psychiatrist because he, to put it lightly, thought I was crazy and suffering from some sort of female stress issue. (So he was a sexist asshole. Oh, yeah, I should probably mention this blog will have cursing. Sorry! NSFW or whatever! I saw him only twice. He was an incompetent twit.)
So anyway, one last doctor. I went, told him my symptoms, then told him I was ready to be referred to the psychiatrist as I was clearly crazy. He just looked at me and said, "I think you have MS. Let's get you an MRI."
A year or so (and many tests and pokes and prods) later, it was confirmed. The details aren't all that important. Suffice to say I'd been suffering the various symptoms of MS for a few years by then. It was what's called a "relapse" that sent me (finally - I told you I was stubborn!) to the doctor. I was young, healthy, in great shape (a kickboxer/bodybuilder) - I shouldn't have been having the symptoms I was. I had a background in gymnastics, etc. I knew how my body worked and it wasn't working the way it was supposed to. La la la.
Medications I take for my MS include Copaxone (a daily injection), several dietary supplements like vitamins and fish oil, and a mobility drug called Ampyra that I'm supposed to be taking and forget more often than not. But this blog should change all that.
In theory I should be updating this blog daily with something like this -
Ampyra
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AM Vits
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PM Vits
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Bed Vits
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Shot
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Exercise
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Water (oz)
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- along with my diet (or lack thereof - one of my symptoms is anorexia. Not THAT kind - it means "loss of appetite." It comes and goes.)
Anyway, that's me. Now about my day:
Today. Ugh. It was a hard day today. I think I'll rank my days from 1-10. 1 being an easy day ("easy" for me) and 10 being one bloody fuck-all of a day (hopefully these will be rare.) I'm going to say today was a 7.
Today I skipped my shot. I know, I'm horrid, but I don't like doing that before going to the pool, and as you can see below, I got busy after, so I forgot about it. I've taken my AM vits and will take my Bedtime vits. I missed the midday ones (bad me, this happens a lot). No Ampyra. (Again, bad me.) Exercise was the pool (see below). I'm not sure how much water I've had today, but I think it's been somewhere about 20oz. I'm trying to get up to 1 liter. Today I have eaten a sloppy joe (made last night), a few Lay's potato chips, two fruit leather strips, a small piece of the Bread of the Dead I made (see below) and a piece of lemon meringue pie a friend sent over to me. (I have awesome friends!) I sent some of the bread over to her, so fair trade in my opinion.
Today I got up and went to the pool. My local gym has a therapy pool that's about 4' deep and has a deeper area for aerobic-type exercise with a shallower trench-type thing called a lazy river that has a current running through it. The lazy river is designed for walking either with or against the current, and depending on my day I do one or the other. I try to get to the pool at least three times a week - Monday, Wednesday and Friday. My goal is to be up to 6 miles in a year. 52 laps around the pool (walking, remember) is a mile. I did a mile today. I bought some pool shoes yesterday and they really help with my stability. So does the water. Normally I'm worn out by half a mile, so a mile is a big feat for me, but today I just kept on trucking. I have some friends who go with me most days, but today I was alone for the first half-mile. A friend kept me company the last half, which really helps.
I did my workout and showered there (a feat in itself, given my difficulty showering, but they have disability-accessible things there so it works out okay), then came home and headed out with my husband to do some errands. Once those were finished, I came home and put the things away that we'd gotten out on our errands. This took me a good hour or so, because I had to do some sorting and cleaning to make room for things (one of which was a new microwave, as ours had died suddenly). Then I made myself some lunch and took a nap. I laid down about 2PM (errands and cleaning, remember?), only to get back up about 4:45 because I was expecting someone. (They weren't able to come by, but that's been rescheduled for tomorrow afternoon, and will probably continue to be on Saturdays.) So I didn't get much of a nap today.
That's something else. With my condition being what it is, schedule/routine is very important to me. It helps me cope with my day and plan my energy use. The energy I have for things is very limited and has to be delegated out, and I jealously guard what little I have for things. If I know I need to do errands on a certain day, I have to plan that. More about that another time.
So, part of my schedule is that I usually lie down about 11 and get up about 5. I know this sounds cool - "Dude, you get to nap all day!"
Uh, no.
No, no, no. I don't GET TO nap. I HAVE TO nap. If I don't, I have no energy for anything else. Also, it's not a nap like you think. Fatigue (which is one of my primary symptoms) isn't being tired or sleepy or worn out. An article I read on the subject says it best: I rarely wake in the morning feeling rested - but more like I have run a marathon with a bout of heavy flu, particularly if my sleep has been disturbed. Fatigue is not another word for tiredness. It is a total shutting down of the mind and body - a barrier comes down past which you cannot move on. It puts everything I plan to do under threat.
So when I say, "I didn't get much of a nap today," it's important. Not getting much of a nap affects my entire day. Sometimes more than one. Sometimes a week. It just depends.
After I got up, I fed my animals and started on a recipe for making Pan de los Muertos, or Bread of the Dead, in celebration of Dia de los Muertos today. It's a long recipe that takes hours, and really, really taxed what little energy I had left. Actually I was surprised at the energy I had today. Maybe going to the pool is starting to have a positive affect on my energy level. Anyway, I'm not able to knead dough like I used to and even though I used a big KitchenAid mixer to help, I still had to do some kneading by hand. I wore myself out and gave myself a headache, but I took some ibuprofen and carried on. The bread got baked and it tasted awesome, thanks for asking. In between letting the bread dough rise and baking it and making the glaze and tidying up the kitchen, I made this blog. An awesome friend made the gorgeous header.
It sounds like I did a lot today, but honestly, it's kind of a "make hay while the sun shines" thing. I have to get a lot done when I can because who knows when I'll be knocked on my ass next, or how long it will last when I am. And I will be. There's no doubt about that. To quote that cheesy movie Armageddon (I love, I know), "It's happened before. It will happen again. It's just a question of when."
Also, time management has never been so crucial in my life. I do the dishes while waiting for my tea to brew, and I try and do them every time a dish is used. It helps me keep things clean and done, because I honestly don't know from one day to the next if my hands are going to feel like cooperating that day. Today, as I said, was a hard day, not the least of which was because my hands aren't at their best today. They're shaky and weak and typing is hard and slow right now. (This blog post alone has taken me about four hours off and on.)
Another great article on the subject is this one about what it's like living with a hidden illness.
Outside, I look fine. Only a few people know I have this condition. As I said, it's not something I talk about. Not because I'm ashamed of having it, but because a) there's nothing to be done about it, b) I don't want pity or sympathy, c) I don't want people to see my condition and not me d) I don't want people to treat me like I'm a fragile little flower.
There's a saying by the great philosopher Denis Leary: "Life sucks, get a fuckin' helmet." That's pretty much how I cope with my issues. Yeah, MS sucks, but it's not going to stop me from living.
It's just going to dictate how I do it.
But I'm a defiant little bitch. For everything this condition throws at me, I'll find a way around it. I'll work through it. Get past it. Until I can't breathe. Yeah, that could happen. I could go to sleep tonight and not wake up in the morning because my MS decided to cut the wire from my brain to my lungs and I stop breathing. So what? It could happen to anyone, and I'm not going to let that fear run my life.
Fear is the mind-killer, people.
I should probably shut up now, as this is already an essay. I'll close by explaining the name of this blog, Stasis Interrupted.
It comes from the cheesy CGI movie ALIEN3. I love the ALIEN movies and it comes from the computer giving a warning about the cryogenic hypersleep stasis being interrupted by a fire. That's pretty much what happened to me. Here I was, going on about my life and business, when a fire interrupted my stasis.
Stasis can also mean "equilibrium" or "poise." MS is interrupting that, too.
So there you have it.
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