It's why I move.

My husband has been with me to my appointments to my neurologist, rheumotologist, urologist...and several more "ists". He see's my MRI's & has had lesions pointed out to him on both my brain & spine. But, what 'most' people don't know, is what else he see's and does...how amazing, almost always, he is...and what it means to be my husband.

I want to talk about something DIFFERENT than the injections, medications, vitamins and the changes I've made in my life to compensate. Ya'll know the medical definition of MS, and if you don't, look it up. The National MS Society and MSAA are great places to learn from!!

Within my close family/friends circle, we use "The Spoon Theory" to explain units of energy. I know that even this theory doesn't begin to explain the fatigue I feel some days, but it at least puts something imaginable on the charts.

When I was first told I had a progressive form of MS, I mourned. I mourned for a life I knew was over. It took awhile - I had to go through literally every step of grieving that I would have had someone I loved passed away. I got stuck at angry the longest. But, born from that anger, grew a need to fight...to prove I could continue being an 'athlete' as my family physician refers to me. A burning need to prove to myself that I coud beat this!! With each 'new' illness I'm diagnosed with - Fibromyalgia, Lupus, Myotonic Dystrophy Type 1, Crohn's - I go through a process. First, I cry. Mostly out of frustration. Then I get angry. Really pissed off. I fight back. I research, research & research. I learn about holistic approaches, I cross-reference what I find & how that works with the 'others' living in my body. I adapt - my lifestyle, my diet, my exercise, my living space - to accommadate space for the next 'thing' my doctor's insist on giving me. I overcome them all. There are changes, definitely, but when I die - it's going to be something cool. Like being executed for my beliefs or because I smashed into a mountain while hang-gliding for my 50th birthday. But, anyway, back to the point.

I'm going to walk you through a 'bad' day first...

I forgot to move my legs before jumping out of bed because I had to pee worse than usual (and usual is bad). So, I end up collapsed on the floor with pee filling my pants. I'm able to get up (so far), get into the bathroom and finish going on the toilet. However, I now have to clean myself up, rinse my panties and my PJ bottoms, put them in the hamper and get a load of laundry ready. Damn. I'm already exhausted. Now I throw my hair into piggy tails or a pony tail, put in my contacts, brush my teeth and grab my workout clothes. Oops on my asthma medication - Advair 1st, then brush...or get thrush. No matter how tired I am the night before, I always lay out my workout clothes for the next day, including socks. No excuses. Which shoes? My Adidas ones that 'normally' fit fantastic or the wider New Balance that cause less neuropathy pain? Day hasn't started so great, we'll go with New Balance. Onward to the kitchen.

Thankfully my younger brother is living with us...the coffee is hot & ready. First I wash my 'adult sippy cup', then I get my coffee. I boot up my laptop. If the sun is coming up, I go outside, let the chickens into their yards, check for eggs and water, etc. Another thankful moment...my husband comes home while I'm outside and he helps with the chicken chores. Some days, like on these 'bad' days, I wouldn't be able to finish by myself. I would probably be found by the kids after they got off the bus - curled up & sleeping in the hen house!!

So, now I'm back in the house...drinking coffee, hopefully not smoking cigarette's. I'm trying to 'wake up'. To clear the thick pea soup-like fog in my brain. At this point, hopefully I remember to put a scoop of whey protein in my coffee - I can't eat because of nausea, especially in the mornings and take my vitamins & 'smart' pill. My vitamins are a Super-B Complex, D-3, Viactiv caramel Calcium chew and 3 chewable Vitamin C (500mg each). My smart pill is Provigil, 200mg. It's supposed to help keep me awake, help clear the fog and improve my memory. On 'bad' days, I can fall asleep even after taking my 2nd one around noon. We're talking about a bad day.

I will typically sit at the computer for up to 3 or 4 hours on these days. Who knows what I'm looking at... Could be chicken coops for idea's, could be I'm researching something... The point is, this is all I do on bad days. Sometimes I do manage to drag my ass over to the treadmill and walk for at least 30 minutes. But, it's well after noon before I get to it. My day is almost over...

I get in the shower - sometime between 3:00 and 5:00pm. I'm late getting dinner to the table, even with Chuck's help. I try to let him sleep as long as he can during the week. Working 3rd's really takes it toll on you! I remember!!

After dinner, the kids are supposed to clean up the dinner mess. Hit or miss. I retire to the couch, where I promptly fall asleep until Chuck is getting ready for work - I get his lunch ready, prep the coffee for in the morning, round up dogs and head back to our bedroom when he leaves.

Back there, I take my med's, my injection, wash my face, moisturize my face, floss my teeth, then use my Advair inhaler, then brush my teeth & mouthwash. Last, I take out my contacts, put my hair in a ponytail and hit the sack. No reading...I'm lucky to remember to set the alarm.

Bad days are usually a period of time lasting 3 days to a couple weeks. Once I realize I'm in a 'flare', as I call it, I pre-plan the menu with Crock Pot meals to make my evenings less taxing.  I wear my "Serenity" pads in case I poo or pee myself.  Don't laugh, this really happens and much, much more frequently than I like to admit!!

Then comes along a good day...

I wake up before the alarm goes off...or at least gently to beautiful music. I remember to wiggle my toes, ankles and bend my knees. I make it to the bathroom ON TIME. I put in my contacts, use my Advair, brush my teeth. I dress in my workout clothes, wear the Adidas and come out to the kitchen already smiling. I remember 1st thing to drink my whey protein, take my vitamins & smart pill. I take care of the chickens before Chuck even gets home. I might even be on the treadmill before he walks in the door...or have breakfast ready for him - farm fresh eggs, turkey bacon, toast. Either way, I will have an excellent workout & a great morning with my husband!! We might work together & sweep the house or fold laundry. Maybe the dishwasher ran overnight & we put the dishes away together. Whatever, we both know I'm having a better day. My fingers are still crossed, as is his - you never know when suddenly my good day will take a terrible downward spiral. But, I have hope in my heart...I want desperately to believe that TODAY will be a good day!!

Chuck goes to bed. If I haven't worked out, I do it now. Or, if I could tell he was tired and there were some chicken things to be taken care of, now I do it. The sun is almost always shining on these days and I'll look for reasons to be outside. If it's too cold or too hot, I get down on all four's and really scrub the hardwood flooring throughout our house. I clean the laundry room - which is almost equivalent to a mud room in our home - thoroughly, top to bottom. I'll wipe down kitchen cabinets, laundry room cabinets...even organize the computer room (eegads). I'm a flurry of activity and have 5 things going at once - including myself.

I get my shower out of the way earlier in the day - have dinner on the table, on time, without assistance. I stay awake while watching evening TV with my family. I might even stay up late, finishing up odds & ends from the day that I stopped working on to spend time with my family. I catch up on the days email and work on the menu for the next week. I'm so filled with optimism on 'good' days. Sometimes I get really lucky and I have 3 or 4, or dare I hope, 5 good days in a row. During the good days, I'm more social. I like to go out & see people, talk to people on the phone, visit. I love to do my weekly shopping on good days.  I read 1, 2 sometimes even 3 chapters in my current book before turning out the light for the night.

Most days are mediocre days. Not 'good', but not 'bad'. Somewhere in-between. My morning might be really good and then my afternoon and/or evening shot or vica-versa. Most of the time, I'm great for 2 or 3 hours 1st thing, then I'm shot for the next 6 hours, then I perk back up for the final couple hours of the day. That's what we call a 'normal' day. Normal days I get my workout and chickens out of the way, but may be late on my shower and/or dinner. Normal days I might 'skip' my workout to sweep or clean out the pantry. Normal days should include a nap. I'm horrible at naps. There's something about laying down in the middle of the day that seems foreign to me. I know that my body needs rest. I really do. I understand my nerves are exposed and that even the slightest weather change can wreak havoc throughout my entire body. I can not afford to let myself off the hook with the excuses. I'm tired - I'm always tired. I'm sore - I'm always sore. My feet burn - my feet always burn. I have a migraine - I always have some kind of headache. My balance - my balance is always bad, so hang onto the handrails on the treadmill. My spasticity is bad - go slow and walk for a longer distance. There is no excuse I can come up with that is as powerful as why I must keep going. If I stop going, I might not be able to go anymore. Tomorrow may be the day I wake up and need a walker, or a wheelchair. What if I wake up from a nap and can't move my legs?! No, I move because I can...

TODAY!