why?

I've been pretty cranky today. Last night, my little girl had to go to the ER for what everyone thought was either appendicitis or a UTI. No one thought I should wait until Monday, so I went. It was 10:30 pm. Mr. M and my other little girl stayed home and went to bed. We got checked in and then waited for our turn. The wait wasn't too long, which I was pretty happy about, seeing as I had been awake since 5:00 am that morning, taking Mr. M to Miami. Let's just say I was pretty exhausted and did NOT want to spend the night in the ER.

Well, we ended up coming home at 2:30 am. I was wiped. She turned out to just have an ear infection, so I guess it was a "better safe than sorry" trip. I fell into bed and was pretty sure that Mr. M would take care of things in the morning for me, since I was SO tired. I was wrong.

Sure, he got up a couple times to help the girls with a couple things, but as soon as he was done, he plopped right back into bed. The kids kept coming into our room, crying, whining, and needing something, and I really hate to just lay there when I know Mr. M will tell them "just a minute" and never get up. So I got up. I took care of my little peeps, and then I got mad at Mr. M. He knew I was tired. He knew I had been out all night. Still, he was more tired, and he couldn't get up.

Sometimes I think that I should just take it, and not complain so much. I am the mom, after all. Isn't it my job to take care of the kids, the house, and everything else all by myself? We often fight about how other moms do it-why can't I? But they don't walk in my shoes. And for whatever reason, no matter how hard I try, I am just not that person.

Then I think, "Why am I still here?" "What am I getting out of this relationship?" I feel like all I do is drive Mr. M around. I take him to school, I take him to the doctor. Then I take myself to school, do my homework, clean the house, do the shopping, cook the food, and take care of the kids. I feel empty physically, emotionally, and spiritually. I feel like he does nothing to fill any of those voids. I always thought that relationships were supposed to be a two-way street, but I feel like ours is one-way.

I don't mean to come down on him. He does help me occasionally. So why do I need more? For whatever reason, the little things that he does do just isn't enough for me. Maybe I am the bad guy. Maybe I need to be more understanding. Maybe I am a sucky caregiver. I love him. I care about him. But sometimes it is so hard when I feel all alone in this. We are currently looking for a marriage counselor. I think it will do us some good.

it's not my fault.

It's no secret around here that I have been seriously depressed. It's also no secret that I am trying like hell to stay positive and make the best of my life. Lately I've been realizing some things about myself. Things that I used to see, but somehow got clouded along the way. Like how smart I am. Yes, me. I'm actually pretty smart! I mean, I already have a BA degree, and now I'm working on getting a nursing degree. Smart, right?

It may seem stupid, but I really have had a hard time believing in myself. And I couldn't figure out why. My self-esteem used to be much, much higher. People used to accuse me of being conceited. I'd tell them I wasn't; that I just had a really good self-esteem. And I think that that is important.

So the other day I was looking at the VA website for people with MS, and came across a section just for caregivers. I read through it, and immediately felt a little better about myself. I realized that being a caregiver means that before you can care for someone else, you first have to take care of yourself. (Ok, I already knew that, but it's easy to forget.) And I have a confession to make--I have NOT been taking care of myself. FOR. A. LONG. TIME. I always put everyone else first. My kids, my husband, even the cat! I eat the kids' leftovers, buy myself clothes only when I absolutely HAVE to, and don't even put on makeup half the time. I leave the house with wet hair, never styled. I don't give myself any "me time."

Fellow caregivers, I have been in the WRONG.

As a caregiver, you simply have to take care of yourself first. If you don't, you will in no way be able to take care of your loved one. You need rest, exercise, alone time, and you need to reward yourself on occasion. I have let myself go. I am now overweight, with high triglycerides, and on the brink of having fatty liver disease. I am always sick with a cold or cough. I am always tired. For years I have been blaming myself, but now I see that while it was me that did this damage, it is not my fault. I was putting everyone else first. My self-less acts turned into my stresses, which have now turned into my own demons. Don't let this happen to you.

Now that I have told you the bad, I need to tell you the good. First of all, I have recognized my problems and have made a plan to do something about it. That in itself is an accomplishment. Second, I have started to implement that plan into my daily life. I am going to a Zumba class twice a week. I am eating smarter. I am (slowly) banning sugar from my diet. And I have a friend who is going to hook me up with a new meal program called "Medifast" as soon as I can afford it. I am ready to fight this battle and slay my demons. Are you with me?

have you ever seen anyone sleep THAT much?

Last week, Mr. M had a plethora of appointments at the VA. We're talking three days in a row, people! It was c-razy. One of them was even at 7:30 in the morning, which meant that we had to leave home around 6:00 am. NOT our idea of fun.

But we did it. We went to the appointments, and even showed up on-time. However, by the third day, we were EXHAUSTED. I was tired from driving all over creation, and he was tired because, well, he's always tired. So we missed the appointment on the third day. I had a hard time getting up that morning, but I eventually did. Mr. M, however, did not get up. AT ALL. I tried to wake him, and he tried to mumble something about not getting up, so I let him sleep. I went about my day, and then picked up the kids from school. At that time, I then tried to wake him up again. I figured he'd had enough time to sleep. I was wrong. I got no response from him. I began to get a little annoyed, as I often do when I am left to watch my husband do nothing but sleep. But I realized that we had both had a rough couple of days, so this time I let it go. That night, Mr. M finally emerged from his slumber, just long enough to eat some dinner and use the bathroom. Then it was right back into bed! "HOW can you STILL be tired?!" I exclaimed. He just was. So I figured I'd spend the evening alone (after those kiddos went to bed, of course) and hopefully do something fun the next day, which was Saturday.

I woke up early with the kids. We ate breakfast and watched some Saturday morning cartoons. Around 11:00, I realized that we hadn't seen or heard anything from the daddy. I went to check on him. (Snore, Snore) He was still sleeping. I asked him if he was going to get up today. He said "maybe later." "Oh." I was sad. I had planned on cleaning and rearranging the house a week ago, and never got to it, and now that it was Saturday, I finally had my chance, so I took it. I cleaned and cleaned and cleaned. It's amazing how dirty/cluttered your house can get when you are NEVER home! I threw TONS of stuff away-kind of like Spring Cleaning. Then I started to tackle the furniture rearranging. I couldn't do it. I just wasn't strong enough. I needed Mr. M's help. I tried to get him up. He wouldn't move. I begged, I pleaded, but still nothing. So there I was, house mostly cleaned up, with the furniture spread out everywhere. I finally just gave up. And you know what? Mr. M did NOT emerge from his bear cave. Never have I seen him so tired. Never has he slept all weekend long. (Well, maybe he has, and I just don't remember it.) I blame the VA, as I like to do, (you know they are a blessing AND a curse). The ones who are supposed to be helping him are often his accomplices in pain. Oh well. What can you do?

I still don't see how anyone can be that tired. I don't think I ever will. I've spent nearly 10 years trying to understand MS. Maybe I never will. Maybe that makes me a bad caregiver. Sometimes I just get so wrapped up in the "It's Not Fair" campaign. I try not to. I know that only makes me depressed, and I truly do have so much to be grateful for. But sometimes I can't help it. I am, after all, only human.

where have i been?

Well, I've been depressed. The overwhelming feelings of moving 3 months ago, being sick, going to school, having no money, and being a caregiver were too much for me to bear. But I am feeling better and am now trying to get back on track. (At least emotionally, that is. I now have a nasty sinus infection after having a nasty stomach flu earlier this month. Does the sickness ever end?!)

In the meantime, we have successfully completed yet another round of good old Tysabri in Miami, hired lawyers and been officially accepted as clients for getting Social Security Disability, and found some new therapy (the psychology kind) options for Mr. M. Things are looking up.

I am managing straight A's in school, and have even unpacked more boxes and organized a little more. Yes, things ARE looking up.

P.S. I am now going to have to pre-approve all comments, as I have been getting weird Chinese? ones, which translate to things such as "toilet" or "bathroom" when I use an online translator. Weird, right?!

a touchy subject.

Although this is something that bothers me and I feel the need to talk about it, Mr. M does not want to hear one word. And I understand. It's just that it breaks my heart to see it happen, then comes anger, then sadness. And I don't know what to do. At this point, I'm pretty sure that nothing really can be done. Just understand that as MS affects certain parts of the brain, those corresponding parts of the body are also affected. For example, it can be the legs, the lungs, the heart, the arms, the ability to swallow, or the bowels.

As members of The Church of Jesus Christ of Latter-Day Saints, we believe that we will one day be resurrected and have perfected bodies. I have always known this principle, but it wasn't until this year that I truly realized what it meant for me and for my family. We believe that families are eternal. Mr. M and I were married and sealed for time and all eternity in an LDS Temple. Because of this, our children are automatically sealed to us as well. We can be together, as husband and wife, forever.

The knowledge that Mr. M will EVENTUALLY be whole brings me great peace and hope. Of course it is hard to remember at times, when things get really tough. That is why I am reminding myself RIGHT NOW that one day, when our lives on Earth are over, my husband will be healed. We will have our lives back. Things will be normal.

EVENTUALLY.

insomnia.

Mr. M is such an insomniac! He hasn't been able to sleep for the past few nights, and last night he was up all night long. It's not the first time he has done that, and it probably won't be his last. Sure, his doctors give him sleeping pills for this exact reason, but he hates to take them.

First of all, he is already taking too many pills. Second, he always gets a "hangover" when he takes most any kind of sleeping pill. (He has tried many different kinds.) Of course he could always take an over-the-counter sleeping pill, and those have worked for him in the past, but they don't always work, and if he takes one of those then he can't take a prescription one. Othertimes he just doesn't want to take them. He hates taking so many pills. I think sometimes he is hopeful that he will eventually fall asleep on his own. Many times he does, after several hours of trying. Then of course, he is completely exhausted during the day. So he is fighting his MS fatigue along with his insomniac fatigue. Thus we have a vicious cycle. And you know how I hate to watch him sleep. It is all so very frustrating.

the fatigue monster.

Fatigue. Exhaustion. The feeling of being so TIRED that you simply cannot get out of bed, no matter what you do, no matter how hard you push yourself. This is how Mr. M ALWAYS feels. And it drives me crazy.

When he was first diagnosed, Mr. M suddenly became tired. ALL THE TIME. We were still newlyweds, and this behavior hit me hard. He was too tired to do anything. I was bored out of my mind, waiting for him to wake up so that we could do something. Anything. Talk, go out, anything was better than waiting for him all day. One of the biggest things that bothered me about MS was the fatigue. It changes a person. My sweet, adoring husband was a different man. Different from the one I had married. I was so devastated with his diagnosis, it put me in a deep depression. But I allowed it to. I wasn't as strong then as I am now, or maybe I always was, but I had to go through that trial to realize my inner strength.

Today is one of those days. He can't get out of bed. But sometimes I wonder if he just doesn't try hard enough. I feel like I am always trying. Trying to understand his pain, his depression, his fatigue, his mental faculties that he has lost. When I see him, lying in bed, it makes me angry. I feel like everything is up to me. I have to take care of the house, the children, the bills, everything. And all he does is sleep. But I know that that is the nature of the beast. I miss the support groups that we used to have where we once lived. Here there is nothing.

He has tried all kinds of medications in hopes that he could fight the fatigue more easily. Provigil, Dex, Ephedra, B-12 vitamins, 5 hour energy shots, and caffeine. Nothing seems to really work. Provigil is supposed to be one of the best meds out there, but it stopped working for him. Even his new drug, the Dex, doesn't live up to our expectations. It's almost as if this monster is unstoppable. How do you fight it? I don't think you can. I urge him to take his medications everyday, in hopes that they will work, that he will muster up enough energy just so he can get out of bed. But they don't always help. This is why he can't work. This is why he needs social security. This is why I am going back to school, to support our family. This is one of those days...