Alone in the night

A few weeks ago I was terrified that I was going to kill myself.

I have been struggling with what I've been told is "situational depression", although it seems like it's been a long time. I've been dealing with a lot of health issues for the past year and it's occasionally taken it's toll on me.  In February of 2015 I went on citalopram after finding out that I may need to go on Tysabri, which absolutely terrified me.  The citalopram was more for the anxiety attacks I was having, but after a month of being on it I found that my stress was reduced, I felt less anxious, I worried less, and felt... happier and more optimistic.  I felt like me again.  At the end of July I had a severe reaction to another medication I was on, ended up in the hospital, and taken off all my meds (and put on prednisone and a whack of new drugs to counteract the side effects of prednisone, which was, in its defence, saving my life) You can read my other blog posts to learn more about that ordeal, but I'll fast forward to about a month and a half ago.

It was taking a lot longer to recover from the severe drug reaction. I'm still on prednisone, even though I was supposed to be off it months ago, but my body freaks out any time I taper too fast... or even what was considered a "gradual" taper, and we've had to modify it to "a really long taper".  I am so tired, and stressed out, and just... down.  I asked my Internal Medicine doctor if it was okay for me to go back on citalopram.  Since my liver enzymes seemed stable, I was given the okay.

The nausea was absolutely horrible.  I was practically bed ridden for almost a week, dealing with nausea and dizziness, even though I downed a ton of gravol. It started to get better after a week.  After a month I still would wake up around 3am nauseated.  I spoke to my pharmacist who suggested I take it in the morning instead of at night.  This made sense to me, I used to take it in the morning last year. So I started taking it in the morning... and didn't sleep.  The 3rd night, I had slept a total of maybe 4 hours at this point.  I was up most of the night.  I lay in bed and had visions of me getting up out of bed, walking to the kitchen, and slashing my wrists.  The visions were so vivid, and I felt so out of control, that I was terrified to even get out of bed to use the washroom because I thought I wouldn't be able to stop myself from walking into the kitchen.  I just lay in bed and cried for hours. The next day I spent the day in bed.  Not doing anything. I couldn't go on social media, or watch t.v., I couldn't even e-mail my prof and tell her I couldn't make it to class. I just laid there and looked at the wall for hours, sometimes drifting into short periods of sleep.

I am thankful that I was able to recognize that these were not normal thoughts for me, and I made an appointment with the doctor at the school health clinic, who is very supportive of mental health concerns. He upped my dose of citalopram, and had me take it at night again. He offered me the option to speaking with a psychiatrist as well, but I wanted to try the adjustments first. That night  slept... I woke up nauseated and had to take a gravol, but I slept most of the night.  After 5 days of not getting more than 13 hours of sleep in total, I slept.

It's about a week and a half later. I'm starting to feel okay again.  Not great... but I haven't had any of those thoughts since.  It is amazing how much your brain can mess with you when you haven't slept, it just makes everything worse.  I'm sure the prednisone hasn't helped.  I had different but equally scary thoughts when I was on high doses of it.  I remember my neurologist once telling me "if your body tells you you need to sleep, then sleep"  that's a bit hard to do as a full time student who works, and I worry about all the students out there pulling all nighters.   It isn't just bad for your physical health, it's bad for your mental health too.

Next week is Mental Health Week at UPEI... I think it's important to share experiences, so I wanted to share mine.

Practically Baby Food

So I have been having a lot, a lot, a lot, of digestion issues since the beginning of December.  At the time, the doctors thought it was viral gastroenteritis. My symptoms matched, it was going around... but it never got better.  Since I was on prednisone they figured that the 5-7 day normal period may last 2 to 3 weeks.  It is now 10 weeks. My Internal Med doctor thought it might be a pancreas issue, but I don't really have any other symptoms.  He ordered some tests though (I'm waiting for the results).

In early January I went on a "low residue diet" which actually kind of made things worse, so I was only on it for about 3 days.

Today I started, what I am not-so-lovingly referring to as "the practically baby food diet".   Easily digestible veggies, low fruit, low fat, low protein (since I have issues with protein anyway), low grains... basically I can eat the following:

I hate to say it (because I'm a foodie), but my digestion was already greatly improved today.  BLAH. After a few days I'm going to reintroduce foods back in, and see how they go.

For breakfast, I had an epic fail.  I apparently forgot that I don't really like sweet things.  I tried to make banana pancakes.   Mashed banana, egg, a bit of coconut flour... I found them really dry (I maybe shouldn't have added the flour) so I topped them with applesauce, and some cinnamon.  I ate about half and was done. The rest are currently sitting in my fridge while I figure out a solution because I hate to waste food.  I must be able to mix it or something (maybe more banana and freeze it...)

bleh. 

Lunch went WAY better.  I made risotto. Arborio rice, vegetable broth, asparagus (uh... that might not be on my list, but I had some and didn't want to waste it), topped with a bit of goat mozzarella.

so delicious and filling!

Supper was the highlight of the day.  I grated sweet potato and steamed them (they could have been steamed longer), added some mild curry spice, coconut flour, egg, and grilled them.  Topped with some probiotic active bacteria yogourt and mustard.  I have some left over for tomorrow!

I liked the ones with mustard the best.

For snacks, I made sweet potato, zucchini and goat feta muffins using banana flour.  I didn't like them warm, but absolutely love them cold.  There's only about a net of 11gr of carbs per muffin, and only 1gr of fat, and since I'm still dealing with steroid induced diabetes, it makes it a perfect snack.

 best snack ever (Banana flour is EXPENSIVE though!)

All of the ridiculousness of the past almost 7 months sometimes catches up with me.  This digestion thing just seems like something else on the long list of things I have to deal with. I try to remember that I'm alive. 20% of people who go through what I went through don't make it, I could have been that 20%. All of the crap I'm dealing with now has to be worth it, because I get to be alive. I get to go to school.  I get to study something I love, I get to work on my Honours research project that I absolutely love. I get to work, although it isn't as much as I'd like to, I get to help people. I get to connect with people.  I get to do things, even if I'm limited in the amount of things I can do. 

Sometimes life sucks. Sometimes people suck... but sometimes it's worth it to get to be alive, and do things you love, even if you can't do everything you want to. 

A little update

I haven't updated in awhile.  I'm not sure what to say.

I'm still looking at at least 4 more months before being off prednisone... but it's been "2 more months, 3 more months, blah blah blah" since August, so who knows.

I started Celexa again.  The first two weeks were absolute hell. The first week especially.  I was insanely nauseated all of the time.  Now I only get it at night, and if I take gravol at bedtime, it mostly helps.

I think I expected too much.  I wanted to feel like I felt last year on it.  I don't. I'm wondering if the fact I was also on Gabapentin for a good chunk of that time helped.  Last year it got rid of the anxiety, and dread, and I looked forward to things. Now I just feel... melancholy. Or maybe apathetic is a better term. Whichever it is, it makes it hard to get out of bed and do things. It's not depression though... well, not like I had before. Dread and anxiety about the future have turned into... complacency. So I guess we're moving in the right direction?

I went for lunch with some friends today.  It was really nice.  I didn't feel overwhelmed at all, which usually going out causes me to feel lately.  We went for a little walk downtown after and I got a smoothie at the juice place that just reopened.  It was nice to be social :)

Rice wraps are my simple love

Totally going a different direction with this post. Not having a lot of energy, sometimes makes it difficult to eat healthy.  Not being well, makes it even more important to eat healthy.

Rice paper wraps have become my go-to. They're quick, easy, delicious, and healthy.  

You can put anything in them... someone recommended peanut butter and banana to me, I haven't tried that yet because I don't know how I feel about the consistency, but I will try it eventually.

You can make cold rice wraps, hot ones, pan fried, deep fried, baked.     Cold and pan fried are what I usually eat.

 I am having difficulty with digestion, so have to be careful with raw veggies, but there are lots of cooked ingredients that taste amazing in them.

 Some of my favourite ingredients are sweet potato, onion, the veggies that are in broccoli slaw (PC is my favourite), mushrooms, tofu, eggplant, avocado, black bean noodles... I tried edamame, it was okay, but I wasn't fond of the texture of them inside.  They were great on their own with a bit of sriracha though!

My spiralizer (which I bought for $25 at Superstore before Christmas, and they now have on sale for around $13)  makes onions, eggplant and sweet potato easy to prep for cooking... although fat sweet potatoes are more difficult to spiralize than the thin long ones. 

I choose the veggies I want, sautée or steam them, and then get the rice paper (bánh tráng) ready.  I can only find square ones at Superstore, and I find them really flimsy.  They don't work that great with my rice paper tray (see: http://www.cuisinivity.com/goodstuff/2012/ricepapertray.php minus the stand) either.  I will stick to circular ones from Asian grocery stores in the future, but the ones Superstore sells when in a pinch (They're okay if you don't want to cook them).

You can see how much nicer the circular ones (on the left) turn out when pan fried, versus the square ones (on the right) which liked to fall apart once they hit the heat :( 

My favourite dipping sauce for them is a combination of peanut butter, coconut almond milk (Almond Breeze unsweetened Almond Coconut Milk is my normal choice, because I also love it in my tea), sriracha, a splash of soy sauce and grated ginger.   I'll sometimes do a splash of orange juice, or rice vinegar if I'm craving a bit of zing.  It's also really good with hoisin, which is one of my guilty pleasures in life... but I can't justify the sugar in hoisin since I'm dealing with steroid induce diabetes... thanks prednisone. If you can eat it, I recommend adding it!  I also once substituted tahini for the peanut butter, because I had it on hand.  It was fantastic, although a pricier option.

 I mix it to a creamy consistency, but add more liquid if you prefer it watery. If I'm taking the wraps with me to school or work for lunch, I'll make the sauce thicker, and put it inside the wraps instead of a dip so I don't have such a messy lunch. 

When choosing ingredients for the inside, something with a crunch gives it a little bit extra something.  Nuts, seeds, shredded carrot, or, I used to not cook the broccoli slaw, when I could eat raw veggies, and it was great. The mix in consistencies is lovely. 

Pinterest is full of recipes for rice paper wraps. 

Sometimes you need to appreciate the simple things in life.  I've had a hard time doing that over the past few months, with all the bad things that have gone on.  Having something delicious, affordable and easy to make, is one of the simple things I do appreciate. 

Privilege

I've been thinking a lot about privilege lately.

While there are aspects of my life that would be classified as not having privilege-  I have a disability/chronic illness, I'm female, I've been sexually abused, I am considered to be low income, there are a lot of aspects of my life, for which I have privilege.  I think it is important to acknowledge, and even be grateful... or respectful, of the privilege you're afforded.

• I am able to attend post-secondary school
• I am able to receive accommodations that allow me to be successful in post-secondary school
• If I ever can't afford food, I have access to my campus food bank
• I have access to universal health care.  I do not have to worry about not being able to afford medical attention that I need.
• I have insurance that helps cover the cost of my medications.
• If I ever can't afford my medication, my province will pay for it.
• I'm white
• I live in Canada
• I live in a well populated part of Canada
• I am from the wealthiest province, based on total GDP and per capita GDP.
• I am from a province that has an unemployment rate below the national average
• My ancestors immigrated here from Belgium and Germany in the late 1800s/early 1900s.  My ancestors never had to experience War, unless they signed up for it.
• I have 4 specialist doctors, a general practitioner, and 3 nurses that follow my health.
• I have a place to live.
• I have people who love me, and care about me.

I am sure I have a lot of other privilege.  Acknowledging your own privilege helps you realize the ways in which you are fortunate, but also can help you realize ways in which to support others who do not share some of your privilege. 

How much can you take, before you break?

2 weeks ago, I felt normal(ish) for the first time in months.
I had hope.  I felt relief.
It all came crashing down.

I have a rash all over my body again (and nausea, vomiting, light headedness and digestive issues). The ER doctor didn't think it is a relapse of DRESS Syndrome, but thinks it may be a viral infection.  I have to wait for antibody test results to come back.

My liver enzymes are up, after being steadily in the ideal zone for over a month.  This means I had to go back on a higher dose of prednisone.  The ER doctor only bumped me up to 10mg/day (already my blood sugar is pissed off at me again), I will know once I see the dermatologist if I have to go up more.

The 3 months until I'm off prednisone is slipping away... so it my ability to remain sane.

You can only remain strong for so long.  I keep reminding myself that last January, when I had my really bad MS relapse, I didn't think I could deal with it... but I did.  In July when I developed DRESS Syndrome, I didn't think I could deal with it... but I did.  When I got steroid induced diabetes, wild mood swings, a moon face, a hump on my back, I didn't think I could deal with it... but I did.

So why don't I think I can deal with this much longer?

With MS I get breaks.  Things go back to not being so horrible. Sometimes not as good as they were before, but a break from the mental and physical exhaustion that comes with a relapse.  I don't get that break with this... I get gradual, slow progressions of kind of, sort of being a bit better... and then it all gets screwed up some how.

I just want a break from everything, before I break.

The end is not near...

What would you sacrifice for knowledge?

Your social life?
Your extracurriculars?

Yes my heart whispers... yes.


The end is no longer near.  For my sanity I'm glad I found that out now, and not before.  It has been 4 months of hell.  It feels like longer... and there's three more to come.  That means I'm BARELY halfway there.  The end is not near.  The worst is most likely over though.  I cling onto that hope.

There is a lot I would sacrifice for knowledge, but I can't let my health become one of them.   This semester was rough, and I know it's because I did more than I should have.  My schoolwork slipped because I piled on other things, and my body couldn't handle it all.

Next semester I need to do better... I need to be better.

I will sacrifice more of my social life, and more of my extracurricular activities, because I don't want to sacrifice my classes.  I am really looking forward to them.  School is a constant that keeps me sane.

Winter is coming, the roughest time of the year for me.  For my physical health and my mental health, and fear is starting to build... going into it with the fragility of both, makes me weary.

Three more months... three more months until I'm normal again... if normal can ever happen.