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Where you Belong


Frightening. Thought provoking. Terrifying. Laughter. Tears.

These are the thoughts, the emotions that I felt while finally finishing the documentary When I Walk by Jason DaSilva. We started this two months ago when it first aired. Me being myself and my husband J. A small part of me didn’t want him to watch this. I knew how difficult it was going to be for him to see it. Another part of me wanted him to understand what I felt day after day, even though Jason’s diagnosis & experiences were more severe than what I’ve dealt with over the 20 something years of my diagnosis.

It was too much for me at the time. There was so much more going on. So I set it aside.

It was time to finish it. I knew it would be painful to watch. I wanted to reach into the screen and hug both Jason AND Alice. Alice stood out for me for her selflessness, for her deep devotion to him even though he was already deep into the physical and mental symptoms that MS can cause. Sure, she was already familiar with it to an extent because of her mother, but she then went and fell in love with this man who was PPMS which is the extreme on the MS stratosphere and she stood by him. She loved him, took care of him in his darkest times. She married him and lived her life. I worried briefly while watching the documentary that people/caregivers of those with MS would come down upon her for at one time need to be free, to go do what she needed to do, what she had done so often before being with him. I turned to J and told him ” I’m not mad, I understand her. This is why I give you your freedom to do what you need to do. I won’t hold you back”.

It’s painful for those of us with these illnesses that have little hope of improving. Me? I’ve been RRMS since 94(officially) but I had symptoms for nearly 4-5 years before this diagnosis. It’s 20 years officially in a few weeks since I was diagnosed. I always speak of it to others as the date when the symptoms first appeared. It feels right because it’s so hard to diagnose. Or in my case, I had no insurance so I suffered until I was able to finally see doctors without being charged an arm and a leg. Which sounds funny, because now that’s precisely some of the body parts I’ve lost along the way with this illness. Not literally. They’re just hard to move some days.

It’s not formal but I’m fairly certain I’ve entered that stratosphere of SPMS, which is the gradual progression of RRMS. My doctor marveled for so long over how far I had come, especially since I was one of those skeptics who wouldn’t take the medications and who took them very briefly over intervals throughout the years. The side effects hit me so hard I couldn’t function.

Granted after 20+ years I’ve had some serious setbacks. Some physical, now some emotional as the MS does take a toll on you mentally after a while. For me it’s panic attacks. I’m afraid of driving and the circle around me has shrunk. It upsets me on a daily basis since some days when I get in my car to go to the grocery store I’m not sure if it’s going to hit me. I can travel to my daughter’s school and the immediate neighborhood with no problem. But some roads provoke the issues.

I’m exhausted all the time. I hate going up and down stairs. I’m afraid to go running or exercise because my legs feel so weak afterwards. I can’t do a lot during the summer with my kids because the heat becomes unbearable. My vision has become horrible. And like the driving, I have good days and bad days with it.

I’m not going to lie, so many times over the years, especially the last two, I’ve given my husband the option of leaving. I don’t want him to deal with me like this. I don’t want him to be subject to my bad memory, my irritability, or ability to not want to get off the couch for a few days when the heat is unbearable. I feel like a failure during these times. He however, has told me he’s not going anywhere. Some days I’m happy when he says this, there are others I feel guilty. Because I feel he deserves better.

Yet, isn’t that what we who have disabilities, illnesses think and feel often? We have to get past it somehow with our self-esteem already taking this hit, we have to find a way to still love ourselves. I try. I really try. I miss writing. I don’t do it as often and when I don’t it takes me a while to realize how much I’m suffering. But my mind works slower, my thoughts are many, my fingers can’t keep up.

For me, this documentary opened up a lot within me. I’d been avoiding the meds for so long. Rather I’ve had horrible experiences with them and though I’ve had the new drug sitting in my cabinet for three months I’ve yet found the right time to re-start it. The tecfidera.

We decided after watching this documentary tonight that I start October 1st. Especially since I’ll be on the lowest dose possible for a long time. I can’t put this off anymore. I can’t get in my car. My eyes are failing me. The other day as I was sitting here my left thumb started convulsing. Not to mention I just may be having seizures again, of which I had on a regular basis from the time I was a year old until my late teens. There are little signs, signs I’ve called my mother with often trying to figure out if that’s what’s going on.

Lately I’ve felt like the neurological enigma.


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I don’t even know what to say. I haven’t been myself lately. It’s getting worse and worse.

I went from having very few flares for years to having way too many in one year. Summer was ridiculous.

And since summer I haven’t felt like me. When both kids were in school full-time this fall I should have had all this energy, used my time wisely to get all these projects around the house done that I had been dreaming about doing for a year or two. I should have started working out at the gym several days a week like I had planned. No more excuses.  I was going to start planning the classes I wanted to take after christmas in library science at the local community college.

None of that  has happened. Most days I’m happy if I can manage to sweep the floors, vacuum and get the dishes put away. Maybe fold a couple of loads of laundry and pay the bills. This is aside from taking the kids to where they need to go after school. During the day I’ve just felt…nothing.

Of course there have been days where I have a decent amount of energy and get everything done that needs to be done. Most days however have looked like the above for the last six weeks. And it’s making me feel less of a person.

The MS has been weird. It’s not that I have worsening symptoms, it just seems like it’s brought upon this new symptom I’ve never had with it before: Apathy. Depression. Severe Fatigue.

I’ve read about them. I know that there are so many others like me who have experienced these. I just haven’t until now. And I get it now. I spend way too much of my time crying over nothing. It just happens. These spontaneous tears.

My legs are always cold. Not in the ” I need to wear pants” cold, but “they feel dead to me” cold. Sometimes they feel heavy. Today I made myself walk the dog a few blocks. Despite the fact that it felt like I was dragging around two 50 lb weights instead of just moving my feet. I could barely make the four blocks. I wanted to go to sleep. Which I did do when I came home. It lasted about fifteen minutes, on the couch. And wasn’t worth it.

I have constant pains that shoot through my left arm and hand. My eyes have been feeling off and sometimes I see purple or white spots. Not sure what that is. I forget things all the time. I feel like everything I need to take care of requires a herculean amount of strength and energy. And often that makes me not want to do them.

I try. Don’t get me wrong I try. I like to keep my house clean. It doesn’t have to perfect(son’s room-I’ve stopped fighting him) but I don’t like a lot of clutter or dust. However I’ve lost interest in trying to make it super clean like I used to. I’m trying to adopt the attitude that sometimes you just have to let things be and live life. Or take naps on the couch.

Everybody is fed and clean. Bills are paid and homework is done. But for me, I’m done with me.

I broke down and called the neuro last week. I haven’t seen or talked to her in almost a year and a half. I have an aversion to dr’s these days, mainly due to how they always seem to want to be paid.

They scheduled an appt with me for two weeks from now. Then when the dr heard I was coming in and why(I happened to mention that pesky issue of an extreme amount of flares in the past year) she had them call me back to say she wants MRI’s done NOW and as soon as they are done she will fit me in. Okee.

So after dealing with some silly scheduling issues I’m getting those done this week. Happy freaking Birthday to me! Yes, it’s my birthday this week. And I have zero interest in celebrating it. Tuesday birthdays just seem wrong.

I’m a bit nervous. Never have been with MRI’s before. My mother asked me today why the hell I needed to get them done, after all they’re just going to confirm I have the MS. I tried not to roll my eyes while on the phone with her(though I was a bit pissed after hanging up), and tried to explain that sometimes other things can show up on these MRI’s. Maybe something that could also explain the horrible migraines I’ve been having. Or why sometimes my hips/lower back suddenly feel out of whack. It’s necessary. And I haven’t had them in a long time.

And because I’m curious to see if my lesions have increased. Because if they haven’t after all this I’m going to be REALLY fucking surprised.

I’ll see the doc early next week. And the following week I get to see my regular dr for a checkup and to discuss why I don’t get along with pretty much any food anymore. Apparently my stomach has gotten in on the attack and is pissed most of the time.

The crappiest part out of all of this is my classes start this saturday. I might cancel them. I sat down this morning crying because I’m tired of one day waking up feeling fine and the next day feeling like I was hit by a truck. J is trying to talk me out of this, he wants me to give it a couple more days and maybe my lack of sleep lately has a lot to do with this(the insomnia issues). He might be right. But I keep feeling that maybe I need to wait until I’m a bit more stable physically/emotionally. Because right now the physical has given way to the emotional. Which I absolutely despise.

I don’t know we’ll see, I’m giving it two more days.  I was looking forward to these for so long. I know deep down if I did cancel them I’d be angry at myself later, so I’m going to attempt this sleep thing all week and hope that come saturday morning I’ll be on a train into the city.

I’ll let you know next week when I come back with the results from my MRI. Wish me luck.

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