Pessimistic? No, not really.

My father thinks I was being pessimistic about those side effects Tecfidera is known for. I don’t think so. For starters, my father didn’t even know what kind of side effects he was talking about until I enlightened him. Continue reading

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Any given shelter

We all have experienced, at least once in our lives, that moment when we wished we could go back. But we know we can’t – it’s impossible – so we grow out of that feeling, reason we weren’t as wise back then, search for the details that tell us things weren’t even that good, all in order to quiet that longing. We say, “My life is actually better now, you know, despite.” But with chronic illness? I’m not sure the process goes like this. Continue reading

Treating Your MS: A User’s Guide to Multiple Sclerosis Medications

Treating your MS HR_book cover jpeg-2I mentioned in my previous post that I wouldn’t be reading non-fiction for a while. However, since I’m in between drugs at the moment and this book came out a little over a month ago, I thought the timing was perfect.

I haven’t been taking anything for MS since February, and right now what I’m going to take next remains a huge question mark. I started on Avonex when I was diagnosed but soon it became clear that interferons are a big no for me due to side effects. I moved to Copaxone but disease progression as seen on MRI made doctors consider other possibilities. Continue reading

New year solutions

fotografiaJust came back from the hospital where I picked up hopefully my last Copaxone box with pre-filled syringes. They gave me a new container for needle disposal and when I got home I noticed the lid wasn’t yet on. All I had to do was place the red lid on the container and push it down so it locked, but I have been feeling my muscles weak lately and I didn’t have enough strength in my hands to do it.

So I just put it on the floor and sat on it.

There, I fixed it. šŸ˜€

Happy new year, everyone! ā¤

The chicken and the egg

So, which came first? Depression or fatigue? Am I depressed because I’m always tired due to MS and can’t realize my potential, or am I tired because it is one of the symptoms of depression?

I barely remember what it’s like to not be tired. When I was 18 I had glandular fever for two weeks. The blood tests came back positive for the Epstein-Barr virus (which is suspected to be connected with MS) and for at least six months after the fever my antibody count remained high. That was the first time I experienced severe fatigue. I lost a lot of weight. I did recover, but I remember telling a friend a year or two later that I had never felt the same after that, like the fatigue mono brought with it had never left me.

On the other hand I thought fatigue was normal because I suffered from insomnia. I remember when I was 15, roughly a year after I experienced being depressed for the first time, waking up in the middle of the night and not being able to fall back to sleep. This pattern remains the same to date. If I wake up, either due to a nightmare, noise, light or even for no apparent reason, unless I’m medicated, I probably won’t sleep. This began at 15 and only at 28, after years of trying everything you can possibly imagine, I went to see a psychiatrist and started taking meds.

With those meds my sleep became sound. But around six months later I noticed that, even sleeping like a baby, I would still wake up tired. That was the first time it occurred to me that something could be really wrong. But I didn’t have to dwell on that thought for long because months later I was diagnosed with MS and told fatigue is one of the main symptoms of this condition.

So I’m confused. Depression can cause insomnia and fatigue. Insomnia obviously causes fatigue. MS causes fatigue. And fatigue, in turn, can cause depression. MS drugs can also cause depression. Antidepressants can leave you groggy and with no energy. All these intertwine. And as much as I try to trace back bits and pieces of my life in search for clues, memories fade – and are not so reliable.

I stopped taking fluoxetine this weekend and I immediately noticed a difference in my sleep, as it is lighter. But today I started taking my first prescribed drug for fatigue, amantadine. My MS specialist prescribed it a couple of years ago but I never tried it because I was taking so many meds at the time I worried about possible interactions. I hope I will be able in a few weeks time to tell what it feels like to not treat depression and treat fatigue instead. Will there be any difference?

In the meantime I will be spending January tying loose ends from 2014, including college (only a month to finish my final paper!) and the switch from Copaxone to Tysabri (how hard can it be? Apparently very hard for the NHS).

I wish you all a very good year, with good health on top of all. šŸ™‚

Black Friday – as in sad and depressed

I really don’t know what Prozac is doing, but I cried more times this week than in the entire year.

First, I went to the hospital on Monday, only to find out that I won’t start Tysabri until January. Since mid-September I know I need a more aggressive drug than Copaxone. That’s three and a half months waiting, worrying about possible side effects and living with that little anxiety that the unknown always seems to bring.

Tuesday I received a phone call. In August I had applied for the Believe and Achieve Project, a project created by the European MS Platform aiming to give employment opportunities to MSers under 35. The position they had in Portugal had everything to do with my project in college, so I applied. I didn’t think they would call me for an interview because they would probably pick other MSers who were unemployed, which is not my case, but they did, the interview went really really well and I hoped I would have a chance. But on Tuesday they called telling me that, while I was perfect for the job and they really liked me, they ended up choosing someone who, due to limitations, would probably never get a job anymore if they didn’t give him/her that opportunity.

Now I want to make things clear. I’m happy for the person who got the job because everyone deserves a chance regardless of their limitations. But I’m confused. I have rejection issues and I think I’ve always been rejected because I’m not good enough. This was the first time I was rejected because I was too good. Fear of rejection just got worse for me. And that sense of non belonging I’ve been living with all my life was highlighted once more. I don’t feel well enough for many things, but I’m too well for others. I’m in this limbo, disconnected. Where do I belong? Some people say that the more rejections the easier it gets. But it’s not getting easier for me. I just feel like not trying anymore. That’s probably what separates the depressed and the non-depressed. Helplessness.

Then the nightmares started. I dreamed doctors told me my mother only had a week to live and I didn’t even have a chance to think about what thatĀ meant because I mobilized all my energies into trying to make that week the most comfortable it could be for my mom. Then I dreamed that I was sitting on a wall and I suddenly lost consciousness for just a second. When I regained consciousness, I was falling. And finally I dreamed I found out some nasty secrets about this guy I fancy. It’s funny because every time I see him again after some time, I get bad dreams. Last month after I saw him I dreamed my father and stepmother were getting divorced. Today was about dirty secrets. Either case, they were dreams about loss.

There’s also a funny thing that happens when people like me. Officially I won’t beĀ filling my new job positionĀ until next year, but I’ve been in training. I ended up getting along well with one of the people I’ve been working with. Today he left for three weeks away on vacation but he left me some books of his. And while it’s great to have new stories to read, I can’t help but to feel that it’s a burden when someone likes me and cares about me.

And you’re gonna have to pardon my French now, but I think I’m seriously

fucked

up.

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.

Copaxone and I

Copaxone and I will part ways soon but at least we get to celebrate our 2 year anniversary together. This was one of the most peaceful relationships I ever had.

I remember meeting the nurse who introduced us. It was a Saturday and she came over after lunch, armed with the auto-injector. Everything I needed to know was really well explained and I got to give myself my first shot on the right arm. Now, you don’t feel the needle or the liquid going in, but after a couple of seconds, when the drug starts spreading under the skin… boy it hurts. It’s like taking one of those nasty vaccines that leave you feeling sore, except you take Copaxone every day. But well, there was an ice pad ready to cool off all that passion Copaxone showed for me and then I went about my business.

I was afraid of having terrible skin reactions as I’d seen pictures on the internet. However, when I got home some hours later and took off my sweater to have a look, apart from a little swelling everything was fine. I remember looking up at my ex-boyfriend and saying “I made it,” like I’d just finished the marathon or something. And this was the beginning of a love affair that celebrates 2 years now.

During these two years I never had side effects worth mentioning, which was a great improvement from the ten months I’d spent before with Avonex. My nurse told me some time later that she never expected things to go so well. I had everything against me: my skin is very white and thin and it bruises easily. Furthermore, I don’t have much fat, and fat is good to absorb Copaxone without leaving lumps. But against all odds, months went by and being with Copaxone every day was never an issue. I got used to the daily injections and even taking it out with me, though I confess I forgot to take it on one or other occasion.

Unfortunately, I’m going to have to leave this happy relationship. Copaxone is just too peaceful and quiet to be able to keep my ms from violating theĀ restraining order. I’m hoping I can finally start a drug that is aggressive to the disease and kindĀ to me. Fingers crossed.