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

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Some thoughts on World MS Day

Another World MS Day has come and gone. This year the theme was Access and a lot of initiatives were organized around it. On the official website there were cards and posters we could print or send to thank the people who are breaking down the barriers to access – the people who are making it easier for us to live with MS. The hashtag #StrongerthanMS was the motto, as in together we’re stronger than MS. Social media was flooded with messages. But as I went through hundreds of posts on Facebook and Twitter, I started feeling a bit concerned. 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. 😉

Late to the party

For me, 2015 is just getting started. I finally wrapped up college (it’s out of my hands now) and my year as administrator of the building I live in is over (good luck to the neighbor appointed for 2015). While I’m still waiting to change medication (I had a relapse in September, will only be starting Tysabri in March, thank you system for the wait, the suspense is killing me) I don’t think it makes sense to keep my life on hold. Continue reading

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

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. 🙂

Christmas with you

This is a little appreciation post I’ve been meaning to write for some time but haven’t quite managed.

I wrote my first blog post here in March and back then I didn’t imagine that such amazing people with such meaningful experiences were going to read me. Least of all that around six months later I would be nominated for awards. I was nominated for the One Lovely Blog Award by Life in Slow Motion and by A Body of Hope, and for the Liebster Award by Love My Life Anyway and by Invisible Pain Warriors.

I didn’t accept any of the nominations for two reasons. One is that I had a relapse in September and my life turned upside down, with bad news, MRIs, blood tests, changes in medication, struggling not to drop out of college, and finally feeling a new round of depression knocking on the door from the end of October until now. The other reason is I love so many different blogs that I can’t pick them all. You see, I’m a Libra, making decisions is hard for me. 😉 And mentioning some blogs while leaving the others just didn’t seem fair.

When this journey began, I envisioned this blog as a source of information on everything I’ve been researching since my MS, endo and PTSD diagnoses. It actually took on a totally different shape. It became more personal. An outlet for questions, doubts, reflections and occasional angry rants. I sometimes wondered how to grow my number of followers and I wrote a couple of posts with “10 tips” and how-to topics because they seem so popular. They’re still in the drafts folder as I never published them. They’re just not me. I figured if my writing were true to myself the right people would show up, like and comment.

They did, and became like a family to me. I needed that. A chronic illness diagnosis sets you apart from everyone else. It isolates you. With MS, because it manifests itself in such different ways from patient to patient, it even isolates you from other MS fighters who may never have experienced your symptoms. In the three years since I got the bad news, I realized some of my friends were really not good friends at all, so I chose to let go of them. And even with the friends I have that are absolutely wonderful, they just don’t know what it’s like. They listen, they try to comfort, but they have no idea.

So that leaves me with how important the interactions with you are for me. And you know who you are. You are the ones who read me and get me, no matter how flawed and lost I may be. You are the ones I read religiously, I care about and worry about when you’re too quiet. You probably have no idea how the kind words you left me felt so supportive many times. I sometimes wish I had more spoons to leave you more comments like that, but in the end of a busy day my mind is often unable to complete a sentence in English that will make sense to you.

Christmas is hard for me because my family is the definition of dysfunctional. And New Year is also hard for me because it makes you look back, look ahead – and I can’t help but feel overwhelmed and hopeless. But I guess I can take them as chances to stop and thank you for your generosity, for giving so much of you and adding meaning to my life.

Happy winter solstice (summer for those in the Southern Hemisphere) and happy holidays. 🙂

Downward

Tomorrow it’ll be two months since I started taking fluoxetine. I’m hoping I can catch my psychiatrist on the phone because things aren’t looking good. I’ve been feeling more and more down, and I haven’t been able to do much because I’m always so tired and when weekends come I just sleep.

As usual with depression it is hard for me to identify the feelings that are bringing me down because everything feels so mashed up inside my head. Thoughts become intricate and confusing, vision narrows, breath seems to become shorter. I cry a lot. Fatigue worsens. I forget to take my daily injection. And when my mom called last night a little tipsy from dinner and making up silly jokes, I didn’t feel like laughing. And believe me, my 67-year-old mom is the funniest sweetest thing when she drinks just a few drops of red wine and immediately starts acting like a silly drunk lady. But I’m just so out of tune.

I’m writing because I’m trying to break things down so I can make sense in case my psychiatrist wants to see me. So what is really squeezing my lungs, heart and guts and making me just want to cry?

Uselessness. Suddenly I look back and everything I did this year seems worthless. What am I going to take from my post-grad? Not a new job, by the look of it. This blog? What’s the point? Everything I read? I’m not becoming healthier or saner just because I know a lot about neurology and psychiatry. And what about next year? I’ve been thinking about projects. I want to write a book that I’ve been carrying with me since last year. And I want to write another book to raise awareness for MS. But even if I get them published, will they reach anyone? Will they make a difference? I also want to start taking my master’s in September. But I’m not sure I will be able to survive such a busy schedule, so why do I even bother? And I want to do some volunteering, but will I add anything to anyone’s life? Because, you see, I’ve been feeling. . .

. . . Unable to connect with people. Classes ended, and I will still see my class mates at least once more and we’re all friends on Facebook and all that. But in the end of the day, years will pass and no one will stay. Everyone will go about their businesses and I will be just another forgettable person they once knew briefly. Everything moves so fast and is so ephemeral. Yesterday I was thinking about relationships and unfaithfulness, and it made me so sad to realize we treat most people like objects. We come in, just take and take and take, never give anything, we play and leave the toy there. And I’m one of those people in need of so much more. Human touch. Human warmth. Deepness. Safety. Little details. But I don’t trust anyone. I’m disillusioned. And I don’t go out much because. . .

. . . MS is preventing me from being so much more. I go to work everyday and it takes all my spoons. I feel miserable because my life has become just work. I miss going out after work for a coffee or maybe dinner with my closest friends. I miss them, miss their support, miss our jokes, and I miss being there for them as well, being the loving and caring friend I suppose I used to be. But I just don’t have the energy. I sleep 9 hours on weekdays and 12 on weekends. If I don’t, I don’t function well enough in the real world. But that doesn’t leave much room for anything else, does it? And I never thought my life would become so… sterile.

I’m in the middle of the tunnel. I feel I’ve been swallowed by this darkness I didn’t see coming. I think I kept myself so busy this year in order to mask all this darkness. I feel like these two.

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Happy birthday, Joan Didion – and me

Joan Didion is one of the most beloved American writers, and she also happens to have MS. Recently I found out her birthday is on the day I was diagnosed three years ago. So I guess today it’s happy birthday to her – and to me. In a way, it’s like a different person was born on the day I heard the words “multiple sclerosis”. It’s a cliché, but it’s true: life was never again the same. Even though I continued to go to work everyday and tried as hard as I could to lead a normal life, changes were gradually happening inside me. I became more relaxed about some things, and yet even more worried and anxious about others. I began to listen to myself more, especially my needs, and not caring so much about what other people think. I try to take better care of myself. Weird as it may sound, my self-esteem actually got better in many ways. I’ve been gathering my strengths and working on strategies in order not to let anyone treat me disrespectfully anymore. It’s like I’m proud of everything I’ve accomplished even with limitations most people don’t dream of, so there’s no way they’re going to bring me down. I go after the things I need more easily instead of being shy and insecure about them and doubting myself. I’m working on not depleting all my energies when I go after something. And of course this all sounds very inspiring and pretty, but let’s not kid ourselves – it didn’t happen overnight and it isn’t like this every day. It’s a work in progress, a process. There are setbacks. Things I need to work on more. Things that I don’t get right on a first try. Or a second. But as much as I hate having MS and as much as it scares me, it was a much needed wake up call and a chance to make some changes along my self-development path.

Joan Didion on being diagnosed: “I had … a sharp apprehension of what it was like to open the door to the stranger and find that the stranger did indeed have the knife.” It’s so true and it brilliantly sums up what I felt three years ago. But let’s not forget that we all with no exception possess self-defense tools and techniques to face up to that stranger with the knife. We need to find them, develop them and use them. We will be fine.