Here Are Some Things I Do Remember

I'll warn you all now, this one might not be funny. I'm feeling a little...what's the word? Maudlin? Not depressed really, just, well, blah.

My therapist, whom I love dearly, has given me the task of journeling again. So far, only random things have been written down but last night I started writing about the things I remembered about myself before MS moved in and I thought that I would share a few of them with you.

Here goes:

Things I Remember About Myself Before MS

I remember laughter, I remembering enjoying the feeling. I remember the hubs and I laughing together a lot.

What I can't remember is the last time I actually laughed. I mean truly, unabashedly laughed. Sure there have been times when I've done a "ha ha" to make someone think that I thought whatever they were telling me was funny, but I can't remember the last time I laughed and meant it.

Smiling is another thing I remember.

Sure, I smile now but it's not a genuine smile with feelings behind it.

No, now the smiles are used to put everyone else around me at ease.

I see the look on someone else's face and I know that they need some sort of assurance that, even thought I feel like I've been hit by a truck who then backed over me and hit me again, all is right with the world.

So, I wake up those old, rusty smile muscles and give them the best smile I've got in me.

And you can see their shoulders become lighter. All is now right in the world. Their world anyways. My world is still turned upside down.

That's one of the things that I have found so interesting about this disease.

Since being diagnosed eight months ago, I've spent a majority of that time assuring everyone else that it will all be okay.

What I really feel like doing is throwing a full on, two year old, body thrown to the floor, feet kicking, arms swinging, screaming at the top of my lungs, temper tantrum. But then someone might knowthat everything is not okay, right?

Another thing I remember, back in my "Super Mom" days, going non-stop all day, volunteering all day at school, dance classes, girl scout meetings, etc. and when I finally to bed, I would climb in between the silky sheets and just breathe.

I loved that feeling. The contentment and happiness to get into my bed. I would even say, either to my husband or to no one at all "God, I love this bed!" sigh....

I now hate my bed.

When fatigue set in and then came the exacerbations, I was forced to spend so much time in my bed, alone, away from my family who were downstairs going on with life. I grew to hate that very same bed, with those very same silky sheets. I wanted to join my family. I wanted to fill my chair for family dinner. Hell, I wanted to cook the meal for family dinner, but my body wouldn't let me.

I would lay there, in that bed, alone, and yell to an empty room "I HATE THIS BED!!" Then I would go on to add "And for that matter, I'm starting to hate my body! What kind of a body just decides to just STOP WORKING???"

Another thing I remember is being able to actually remember. I didn't need to make millions of lists and post it notes just to get through the day. I could remember an entire grocery list in my head. Now, if I have to go to the store for one thing, say coffee beans, I have to write it down! One thing!

I'm starting to feel like a child again who shouldn't be trusted on their own. I push myself too far, I can't remember to turn off the oven (that actually has not happened yet by the way) and honestly, I'm a bit of a mess. Maybe I need a nanny.

So, there you have it. Just a few of the things I remember about me and life before MS came to live in my body. Do you all remember anything?

The Value Of A Good Therapist

The day I was diagnosed with MS, this change started happening to my so very extremely nice all the time personality. And the more the MS started to effect or change my life, the worse it got.

I was...well for a lack of a better word PISSED. I was so pissed off. At so many things really.

I was pissed at the doctor who told me that even though I definately had MS, once I started the Rebif therapy, I might not even know that I have it for ten years or more.

Really Doc? Because I've known that I've had it every single day since, thanks.

I've been pissed at the way I see my illness effecting my family. My husband is always watching me like I might shoot off into space if he takes his eyes off of me, my kids were terrified that I was going to die and they were also sad because the mom who used to be "Supermom" now couldn't get out of bed long enough to make them breakfast.

I was pissed at the constant pain that I've been in, pissed as my leg for not letting me know when it's going to decide to stop working, pissed at falling down, at fatigue, at the neurologist, who was supposed to be an MS specialist, who kept telling me that MS didn't cause pain, that my leg had full strength, and that when I started talking like Forrest Gump that wasn't MS either.

That's another thing I've been mad about, I never know what's going to happen when I wake up one day to the next. Honestly, one day I took a nap with my two year old son and I had been feeling different that day. I couldn't figure out what it was, not worse. Just tired. When I woke up, I couldn't speak. Then when I could get words out my speech was all broken and I couldn't complete big words and sentences were impossible.

The next day, my husband drove me to this "specialist" who told me that it wasn't my MS causing my speech. It was stress. I thought, but couldn't say or I totally would have, "STRESS? Really? Cause I have three kids, a farm, a house to run, and all of that was there before and I never started talking like Forrest Gump before!!!" His solution was to up my antidepressant (that I have to take because the Rebif is known to cause depression) and give me a script for Xanax. My husband basically told him to stick the scripts up his bum and we left. I haven't seen him since.

I honestly felt like I was drowning. MS had changed everything about my life, it made me feel like I was on the outside of my life looking in, and I knew I couldn't deal with all of this anger on my own. So, I went to see a couselor and I am so glad that I did.

She's been helping me deal with all of this anger and has helped me to find ways to still be involved with my family without wearing myself out. I've been seeing her now for almost five months and it has made such a world of difference. I'm not as angry anymore, although I do still have my moments of rage at this stinking illness, but I'm dealing with it. I can see the difference it's made in me and in my family who no longer feel like they're walking on eggshells around me anymore.

I highly suggest counseling or therapy to anyone going through this. Therapy isn't just for crazy people, which is what I always thought before.

There's nothing more valuable than a good therapist!