I kicked off 2016 dancing with friends and generally in a good mood. But soon after I went back to work I started noticing my throat going sore and my lungs burning with a tickling feeling. A lot of coughing ensued. And by a lot I mean a LOT. This wasn’t one of those colds where you just feel like you were hit by a bus for three days and then you’re fine. No, this was a mild enough a cold, except that it lasted for a whole long eight days. That means that for those eight days I barely slept because I couldn’t stop coughing.
I think you can imagine where this story is going. Continue reading
So… classes started last month and suddenly I can’t catch my breath and write a few words here. But here I am trying to keep you up to date.
At the beginning of the month, October 5th to be more specific, I switched to the full dose of Tecfidera. I thought, considering how bad my flushing could be on the smaller dose, that I would simply go from flushed to radioactive. As it turns out, nothing weird happen. I never had headaches or itching anymore, and although I still flush, it didn’t get worse. Some days it’s actually milder. So that’s really good. Continue reading
There must be something wrong with me
‘Cause I kind of like the bruises
I gave it all and I could have given so much more
Tricking time, tricking memories, tricking stupors…
And I pretend you’re writing your name
Over aching limbs and long distances
Flooding me with the spaces between
Trials and errors, trials and errors…
And I pretend I can defeat
Long hours, needles and pills
And I just fall behind, no need to keep up
And I pretend I can breathe
There must be something wrong with me
I can’t trick I can’t defeat
I can’t connect I can’t breathe
I can’t pretend I can trust
I just remember you asked me to
The question I’ve been asked more frequently in recent weeks is whether I’ve heard from the hospital. This, while showing concern and interest, is beginning to feel like a burden for me. Continue reading
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
Today I went running for the first time since January. Unlike many chronic illness sufferers, the heat doesn’t bother me that much. The cold, however, (and the wind and the rain) really does me in. No matter how much I warmed up, I could hear and feel my knees and ankles cracking like an old lady’s. Also, I had to have warm clothes on before going on, otherwise I would freeze, but as soon as I started running I would overheat and would have to take off some of the clothes in the middle of it (not a very fancy strip, I can assure you) and carry them with me until I finished.
So I decided to stop for a while. By the time the weather got better it was the end of the semester and I was way over my head with work. Then I went away on vacation. So here I am, 7 months later. I went to the same circuit I used to do and – surprise – I wasn’t that bad. 😀 I think I did it in more or less the same time, the only difference is today I took several walk breaks whereas before I would just take one.
Either the exercising I’ve been doing at home to compensate for being on a hiatus from my dance classes and from running has kept me more in shape than I thought, or while on vacation I worked out more than I thought from swimming in the ocean and hiking in the woods. Whatever it was, I feel pretty good about myself right now. As soon as I started work again on Monday I felt my body yelling at me, “What is this sitting in front of a desk all day? This isn’t natural. Go on, get on the move or I’ll be really sore and achy.” It did get sore and achy by Wednesday and Thursday. Luckily I found out that stretching improves the pain, and as I work mostly by myself in a cubicle I started using the book shelves as ballet barres when my legs and back need a break. (And now I’m going to recommend ballet classes to everyone. Kidding. 😉 )
I don’t know how I’m going to wake up tomorrow, but I know that even if it’s bad it won’t stop me. Whether I go back to dance classes next year when I finish post-grad, or keep exercising at home, or try to keep running despite winter, I can’t really stop moving. I feel that the only reason I’ve never been paralyzed due to MS is because my brain learned during years of practicing several contemporary dance techniques that there are many ways you can make a movement and many ways your feet, legs, hands, arms, head can get to where you want them to be. When something feels wrong, the brain gets creative and flexible and forges new pathways to achieve the intended result. Our bodies and minds are endless resources. I’m going to keep working on never running out of those.
You probably saw it on the internet as many times as I did: depression rates among patients with multiple sclerosis are considerably higher than in the general population or among patients with general medical conditions other than ms. Three main reasons are usually referred to explain this: a natural response to the diagnosis and to the many losses ms brings along the way; possible medication side effect (especially if you’re on interferons); and damage caused by ms lesions to the brain structures that regulate emotions and emotional responses.
However, this book takes it a step further, by pointing to research that suggests that depression may be an inflammatory disorder, much like ms. It is found to be an early sign of many inflammatory conditions. I remember my neurologist telling me the first symptoms of ms were fatigue and depression. I could understand the fatigue part but I couldn’t quite get how depression fit. This books explains why, emphasizing the role of cytokines in the process. So, instead of looking at depression as a consequence, maybe we should be looking at it as a different underlying mechanism.
Another thing I learned from this book was that pain and anxiety share some of the same biological mechanisms. Being that a lot of people with ms suffer from pain, improving patients anxiety levels could greatly relieve pain as well. Anxiety and depression can and should be dealt with through every option available, including medication, exercise and cognitive therapy.
The book then proceeds to suggest many different self-help techniques, illustrated by stories of people living with ms. Now, as a self-help book, Alison Shadday’s MS and Your Feelings will always be my favorite. I found It’s Not All in Your Head to be a bit repetitive at times and not delivering in some crucial moments. For instance, at a certain point, we’re invited to write down our roles in life, identify the stressors associated with each role, and then come up with solutions for each stressor. The author gives examples of roles (patient, parent, student, employee…), of stressors (MRIs, family holidays…) but no examples of solutions. I reckon however there are good tips in this book and therefore I recommend it.
Here’s the Amazon link if you wish to learn more:
So… it’s been a little while. I went away for a week on vacation and when I came back it’s like all hell broke loose, more or less.
The good news is that the ultrasound revealed that my cyst keeps getting smaller as a result of the medication I’m taking. The doctor also examined me and he said he couldn’t even feel it anymore. The pain I sometimes get in my lower abdomen is apparently not related to my endometriosis, so it still remains to be diagnosed, but overall good news.
The bad news… After a week completely free of ms symptoms, as soon as I got back I started feeling intense fatigue again. I woke up on Monday and my right arm was numb and I was so tired my legs hurt and felt heavy, as if I had cement blocks attached to them. Throughout the day I noticed my left hand was always stiff.
These symptoms eventually subsided as the week went on, except for the fatigue and the feeling my legs were heavy. I kept spreading peppermint gel on them to make it better and it helped a little.
Now what am I to make of this? We know that stress exacerbates ms symptoms, but I think it goes a little beyond that. How we feel psychologically also messes us physically. Because the truth is I feel stranded in my everyday life, being kept in an office/cage from 9 to 5, being given responsibilities I don’t have the skills to deal with and wasn’t taught how to. And in the end of the week, life seems to make little sense. I don’t see ways out, I don’t see any meaning. I look for meanings and fulfillment in other places, but by the time I get home from work I’m usually so tired I can’t even write a few words on Twitter, let alone do anything else.
The other day I was on a Facebook group for people with ms and someone was telling she got her disability retirement at 31, which is how old I am now. Besides the fact that I don’t think anyone would give me retirement just because I feel tired all the time, it doesn’t even cross my mind throwing in the towel at such a young age. I don’t think I should give up because I don’t even think the problem is the disease itself but the external factors that are contributing to it. If I were given more flexibility in terms of working hours and the opportunity to work from home I believe my symptoms would generally improve. But unfortunately the company where I work is still operating in the past century, and given the economic crisis my country is struggling with, the prospects of finding another job look dim. I should be glad that I have a job and that my medication is still made available, though I know in other countries there are already new and more sophisticated options. So in the meantime I’ll just keep on dragging those cement blocks and hope everything will be fine.