Sometimes no change is good

Dear friends,

It’s been a long long time, I know. And I don’t even know how to explain my absence. Amidst fatigue, trying to manage it and balance it with all the activities and interests I have, time flew by. I also sometimes get so bored about my life and my complaints (it’s always about fatigue, as you may have noticed) that I don’t want to bore you too. And because of that, I only wanted to go back to writing when something big changed in my life that I could tell you about. Something big and for the better.

But, you know, sometimes no change is good too. Last month I went for my annual MRI and yeah, you guessed it, there was no change compared to last year. No new lesions, no inflammation, no sign of disease activity. I was surprised and so glad. I didn’t make a big fuss about it, like calling everyone right away, because after five years of being diagnosed I’m tired of having my entire life revolving around MS. But believe me, I’m happy. Quiet but happy. And I think that for two consecutive years not having signs of disease progression is like my MS is giving me permission to leave it alone. It’s like it’s telling me to go live my life.

Now I just have to figure out what “living my life” is without the constant fear of getting worse. Ha.

So there you have it. I occasionally visit your blogs though I must admit that I’m enjoying the social media diet, especially when it’s not so much the physical fatigue that’s killing me but the mental one. I went back to practicing meditation 15 minutes every day to deal with the mental fatigue. And I say “practicing” because I can’t really meditate with my hyperactive mind. I try my best and hope some day I’ll get there. My neuro prescribed Ritaline to help with the fatigue but I haven’t tried it yet because I’m still trying to manage it on my own. Let’s see how that goes.

No big changes, just small ones, some good, some bad. It has been an awful year at work (changed for worse) which has been the main culprit of my mental fatigue. College was also tiresome and disappointing. On the good side, I’m volunteering with three patients’ associations and I found a new motivation and purpose with that. I also started dating again, so far with mixed results (especially because I can’t figure out what I want from men and relationships) but I don’t care because I hadn’t dated in two years, so I think that’s positive.

And that’s it. I love you all and miss you and hope you are well. Even when I don’t come here I often think of you. Sending warm hugs to you all. ❤

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When your car is your best friend

January was definitely a no-luck month for me. First there was that terrible cough that prevented me from sleeping for an entire week. Then my car was scheduled to go to the shop for some maintenance that wasn’t supposed to last more than two days. As it turned out, it lasted four days. Then I picked it up, and 10 days later it broke down (I couldn’t turn the wheel) so back it went to the shop. This time, the car was in there for a week and a half.

So why am I writing a post about my car? I mean, isn’t more ecological to ride the public transports or carpooling with a nice coworker?

Because when you have a debilitating illness like MS having a car makes a HUGE difference. Let’s see: Continue reading

What about now?

The last time I really fell head over heels with someone I didn’t feel tired. Me, the one who was always tired and didn’t even know why, found energy where there was none, found ways to continuously pick herself up because body and mind were so light. Does love cure all? No, I don’t think so. But maybe the rush of chemicals released into our bloodstream when we’re in love have protective and anti-inflammatory effects (this is totally unscientific, please don’t quote me) and somehow help mitigate symptoms.

But that was a long time ago. That was before I was diagnosed. Continue reading

I Monday Need Tuesday A Wednesday Break Thursday From Friday Myself

saturation point. n. 1. Chemistry The point at which a substance will receive no more of another substance in solution. 2. The point at which no more can be absorbed or assimilated.

This is what MS does to me. It makes me reach my saturation point way sooner than I once did. The point at which fatigue evolves into pain because no matter how many hours I sleep they’re still not enough. The point at which I can’t stand hearing my friends talk because everything they say seems trivial and shallow compared to what’s going on in my mind. The point at which just the thought of typing a few words here drains me. Continue reading

“But you look well”

At the drugstore the other day. An old man was complaining about how he felt so tired and sometimes his legs didn’t obey him. And then came the annoying words from the lady at the counter. “But you look well!” To which he replied, “I know, it’s not my looks I’m complaining about.”

I mentally high-fived him and took note of his words. ‘Cause, yeah, we’re all pretty good-looking, no one needs to remind us that. 😉

Work vs Chronic illness

There’s something wrong with this title. There shouldn’t be a “vs” there. It shouldn’t be a war. But most of the times it is.

Unlike many people I know who suffer from chronic illnesses, I still work full time. And I don’t complain about that. I wish I will be able to work full time for many many years. I wish to have a life that feels as normal as possible. Then why do I feel like quitting so often? Continue reading

Guinea pigs have feelings too

One thing psychiatry and neurology have in common is that patients get medicated by trial and error. I was diagnosed with MS three years ago and I’m about to try my third treatment (I’m hardcore like that). And since I stepped into a psychiatrist’s office for the first time four years ago, I have tried many different drugs, some more effective than others.

Doctors look at you, listen to your symptoms, look at your tests, and still have no way to predict if a given treatment is going to work for you or not. That leaves patients sometimes feeling like guinea pigs. And oh well, guinea pigs get tired of trying too. This particular guinea pig suffers from chronic fatigue that is physical, mental and emotional. Every day this guinea pig goes home feeling like it just completed the Olympics. And after all these years exhaustion is getting the better of it.

I called my psychiatrist earlier this week because fluoxetine is making me feel even worse than I was, and she decided to switch me to paroxetine. Reading about it online, it seemed to me more of the same. So is it even worth trying?

I wondered – what would happen if I just stopped?

And do I really want to know? 

I’m currently discontinuing fluoxetine according to my psychiatrist’s treatment plan, but I haven’t picked up paroxetine yet and I’m not sure I will. I’ll see how this goes.

New definition of exhaustion

Last Saturday, as I mentioned on my last post, I had to sleep 11 hours out of complete exhaustion. I thought Sunday I would feel refreshed and ready to continue to fight my battles but I ended up sleeping 12 hours. I only left my apartment last weekend to have dinner at my mom’s on Sunday. She said my eyes looked really sleepy but I was in a good mood and the dinner went well. Monday morning I didn’t hear the alarm because I was in a such a deep sleep. When I finally got up, I went to the kitchen first and then went to the bathroom. I have a vague memory of a feeling of nausea taking over my body and then the lights went out. I passed out.

This was probably caused by low blood pressure. I usually have low blood pressure and spending most of the weekend in bed probably didn’t help. But what I find funny is that I woke up, and as I didn’t know where I was or what happened, I let myself blackout a second time. This to me became a new definition of exhaustion – when you let yourself lose consciousness because trying to figure out where you are and what happened is such an effort you don’t even try. I was actually quite comfortable with my system shutting down. Losing consciousness is apparently the only way to make sure I don’t worry about anything. It’s the only way my mind actually takes some time off. Because even when I’m sleeping I’m in such distress. Last week one night I dreamed I was being stalked and another night I dreamed I was trying to kill myself. Last night I dreamed I was running because I had witnessed a crime and they were after me. It involved running down endless flights of stairs and finally trying to escape on a motorcycle (never drove one in my entire life). I haven’t been watching movies or TV (no time for that) so I don’t think that could be an influence. But I can’t figure out my subconscious agenda either.

When I woke up the second time I managed to get up. I realized I had bruises on my knees, shoulder and face. I also cut my lip. I think I literally fell on my face. Had it been more serious, I wonder what it could have happened to me. I live by myself, so how long it would have taken for someone to help me if I could not do it myself? Better not even think about it.

Supposedly, my psychiatrist took me off escitalopram and put me on Prozac to help me be more “up”. When I first started reading about MS, I learned that Prozac is one of three drugs sometimes prescribed to help with fatigue. I don’t know what Prozac is doing, but I’m certainly not more “up” and I’m certainly not less tired. I don’t think that was the deal.

Speaking of meds, I finally know what my new MS drug is going to be, after failed attempts with Avonex and Copaxone. It’s still going to take a while before I start, but I will sure keep you posted.

“I hope you have the courage to break the sound barrier.”

I had to sleep 11 hours today out of exhaustion, and I know most people wouldn’t understand. Even if I told them I work full time and I’m currently going through changes at work, that I have classes at night and spend most of my weekends researching and writing my final paper for college, that I have to manage my apartment building affairs to which I was appointed this year, that I struggle with two chronic illnesses plus some mental issues, while trying to keep exercise and social life at an acceptable minimum, they would still go, “Oh, yes, my life is pretty rough too but I get by with seven hours of sleep.”

So this is a TEDx Talk I found that sums up in 15 minutes some of the things we chronic illness sufferers feel and go through. It’s about Lyme disease, but it could be about multiple sclerosis, endometriosis, mental illness and many other conditions. It’s worth taking a look.