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.

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 :)

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.

The end is near...

Peaks and valleys of health... of emotions... the end seems almost in sight, but I'm too scared to be hopeful.

I'm trying to make plans.  Plans for Christmas, plans for next summer.  I found out about the GESIS Summer School in Survey Methodology in Cologne, Germany.  They have some amazing courses.  They're geared towards Masters and PhD students, and researchers,  but there are some courses that I can take... that I want to take (if next year is similar to this past year).  The fees are decently reasonable ($100-$250 euros per course), it's the getting there and staying there that is going to be costly.  I'm going to apply to every bursary I can find next semester, and save up as much as I can in the summer.  I think the knowledge will help me out a lot in my future career, and projects in Grad school, and it would be an amazing experience.

I still have this fear that it's all going to go to hell.  The past few months have taught me to be afraid.  I don't like it.  When I was diagnosed with MS in 2006 I gained a sense of freedom... which may sound silly, but I had spent several years prior being afraid of what was wrong with me, the knowledge of finding out what was wrong granted me a sense of freedom and relief. I realized that I needed to do things, to not let the world hold me back.  To not be afraid.  I've done things that I wanted to do, that scared me, over the years... with some restrictions... there is no jumping off bridges or out of planes, that's a fear that has no rewards for me.  I travelled by myself on several occasions, went to university, moved halfway across the country, to place where I didn't know anyone... these all came with great rewards.

These past few months though... there's so much fear.  Fear of being sick, fear of being hurt, fear of everything.  Even mundane things... it's like I'm on autopilot of letting things control and restrict me.   I'm hoping it's a side effect of the prednisone, and once I'm finally off it, that I might be okay again.  I need to be okay again.  I know I'll never be the same... but I need to be okay.

Writing is helping.  This blog.  I've also done 2 guest blog posts where I review teas for a local tea company:

http://www.ladybakersteatrolley.com/fallisintheair/

http://www.ladybakersteatrolley.com/holiday-season-is-here/

Their teas are friggen fantastic.

15mg... I'm on 15mg of prednisone for 2 weeks, then 10mg for 2 weeks... then hopefully tapered off completely shortly after that.  The end is in sight... I want my body back.  I want my body to have a break from being pumped full of all these medications.

One step forward, two steps back... aka clusterf*ck.

I'm not dead... so there's that.  Yay looking on the positive side of things.

I woke up this morning with a very important realization... (thank you dream!)

I have been screwing up my medication for the past 2 weeks.

I was supposed to go from 50, to 40 to 30... and be on 30mg/day this week, for my prednisone.

I went from 50 to 20 to 15, because the pills I somehow got into my head (I don't know HOW, I've been taking them as to "top ups" since the beginning) were 10mgs are actually 5mgs.  I KNOW prednisone doesn't exist in 10s.  I've told people that.  I know that I have a bottle full of 5s... I used them when I was on 120mg to make up the 20, 80 and 60 to make up the difference between the 50s and it... yet somehow when I dropped below 50, my brain decided that 4 of them equalled 40 and 3 of them equalled 30.

On the plus side of things (other than not being dead, because apparently dropping off so quickly when you've been on a high dose for so long can be super dangerous), my random high blood pressure, random weird blood sugars I've been having super high morning blood sugars that just randomly started at the end of last week, and I've had days where I've gone from 6.0 to 24.3 to 4.6... my body doesn't know what it's doing.  I also have been exhausted all the time, even sleeping 12 or 14hrs isn't enough, and I have been extremely forgetful... more so than normal, and to the point it was causing me concern.

My doctor who is on maternity leave right now had me come into her office shortly after I called to say "what do I do??" (I emailed my nurse when I woke up and she suggested I call the doctor's office first to see if there was a way to get ahold of her).   I got blood work done as well, and I think they may have blown my vein.  It really hurts still and they didn't get blood out of it.

Essentially though, I wasted the last 2 weeks, because I go back on 40mg tomorrow, and then start the tapering schedule all over again (because clearly my body is not okay with the fast taper)

I also now have to be careful of my blood pressure because it might try to regulate itself, and I'm on medication to help lower your blood pressure... so I could get lows.

Ahh.

This is such an interesting journey.

On the fun side of things, I wrote a guest blog for a local tea company that has AMAZING teas.  It was really fun.  I like doing tea reviews :D

Mini breakdowns and new perspectives

Last night I had a mini breakdown.

I thought, and verbalized (sort of), while sobbing uncontrollably,  that I don't know why I was allowed to survive DRESS Syndrome, only to be given all of the issues I'm going through now and that I was so tired of dealing with it.

After a few hours of on and off crying.  I went to sleep.

This morning I woke up with a new perspective, perhaps because it's Thanksgiving (well technically tomorrow is, but a lot of people celebrate today).

One thing I've struggled with is adding another year to my program.  I keep telling myself I'm okay with it, I keep telling other people I am okay with it.  But I wasn't.   I think maybe I am now.

I recognize that I could not have completed 6 courses this semester... or maybe I could have, but not with good marks.  I don't have the energy, I have too many doctor's appointments, there's too much that's still wrong.

I also realized that if I HAD gone with the 6 courses, I would not have taken Disability Studies, which I absolutely love, and I think will benefit me both personally, and academically in the future.  It's giving me a lot of new perspectives on a lot of things, especially disabilities.   It's kind of funny (not in a ha-ha way),  I haven't even really thought about the fact I have MS in the past couple of months.  Even when my hands bother me I associate it with neuralgia, not with MS (although it's the MS that causes the neuralgia).

I also get to take other cool courses, there's a Distance Ed course at Laurentian that I want to take, that I can take next semester if I want, and get credit for.   There's the possibility of a Gender & Sexuality course that I really want to take being offered next year.

If I'm going to be here for another year, I want to expand my knowledge and gain more perspective... I want to build the strongest base for going into my Masters possible, but I also want to learn for me... because I don't know what the future holds, so I want to be happy right now.

It's sometimes hard to be happy, especially when it seems like everything is out to make your life difficult, when there's rocky roads all over the place... It is reinforcing the fact that I actively do things in life that make me happy.  I need to not do things in life that stress me out.

I'm thankful for the mini-breakdown.  I'm thankful that it didn't overwhelm me or break me completely, and I'm thankful that I've gained a new perspective, and reinforced some previous thoughts.

The Guilt

I logically acknowledge that the guilt I feel is ridiculous... it doesn't stop me from feeling it though.

I feel guilty that I'm not doing as much as I used to do.

I feel guilty when I take the time to go to yoga, or aquafit.

I feel guilty when I take the time to take care of myself.

I feel guilty for spending more money on healthy food.

I feel guilty when I need to sleep in a bit longer.

I feel guilty when I don't have the energy to do something I want to do.

I feel guilty when I miss out on things I want to do, because I can't do them.

The psych and diversity & social justice student in me wants to analyze the reasons why I feel guilty... but I think it just all comes down to the fact that we live in a society where you're seen as selfish if you do things for yourself.

Sometimes it's okay to be selfish.   It's easy for me to tell other people that, and believe that for other people... it's harder for me to believe that for myself.

It's okay when it's not okay...

It's okay to cry.

When life throws punch after punch and then kicks you when you're down.  It's okay to cry about it. It's okay to feel fed up, and stressed out.  It's okay to not know if you have the power or the energy to go on.

It's okay to spend a day, or two, in bed, doing nothing, hiding from the world.

But then you get back up, you get help if you need it, you learn to be okay with the bad days, because you survived them.   I saw a meme recently that said "You have survived 100% of your worst days"  and it's true... it doesn't matter what you're battling, you have survived and it's amazing that you've done so.

John Underhay (PEI Curmudgeon Blog)  spoke at my university during mental health week and he said something along the lines of it being okay for depression to make you hide from the world for a couple days... but you can't let it go beyond that, and I've been thinking about that lately.

I've also been blaming the prednisone for all my crying (because it's responsible for most of my rage)... but I think maybe it's not entirely responsible for all the crying.  I think it makes the bad seem worse... but life is really fucked up right now, and full of uncertainty, and that in itself is enough to warrant some mini breakdowns... maybe not so much the crying pretty much all day that happened on Friday, but definitely the moments of feeling emotionally, physically and spiritually drained.  The moments of not knowing if I have the energy to go on, to fight. There are times when I don't want to fight... the pure exhaustion of it all.

Cognitive vs. Emotional.   Emotionally I feel like doing nothing, Cognitively I know I should do things that I enjoy... and if I can get my cognitive side to win the battle, afterwards I do feel a bit better emotionally.   I still can't trust my emotions.  It sucks.

Today I met with my dermatologist... I knew one of three things was going to happen:

-My liver enzymes would be good, and I could drop to a lower dose of prednisone (start to wean).
-Everything would just stay the same
-My liver enzymes would be horrible, and I would have to go on IV steroids.

I was hoping for the first one... I was *supposed* to start weaning after I got out of the hospital... but my body doesn't seem to be doing this whole healing thing right, so I haven't weaned.

It's been a month.

A month on high doses of steroids.   A month of my body being "in shock", a month of this stupid DRESS syndrome (well... more than a month, they just didn't know it at that time).

The second one won... My liver enzymes are high, but not too high.  High enough that they can't risk dropping my dose, for fear that I might flare up again... not high enough that I have to go on IV steroids.   They're a little bit higher than they were when I was let out of the hospital... A MONTH AGO (They've gone way up, and down, and back up.. and down since then.)

So now I remain stagnant.  Nothing changes.  I have no idea when I'll begin to wean of the steroids... which is going to be something like a three month process... at the rate I'm going I have a feeling it will be longer.

It's really hard to see the light at the end of the tunnel when it keeps getting further away.

I met with my counsellor today too, and he is helping me realize that I can let the fear of the unknown overwhelm me, or I can acknowledge it, and make changes in my life that help me deal with it.

I keep telling myself there's nothing I can do except make sure I take care of myself.  It is actually making me realize how much more I actually need to take care of myself, my body, my mind, my spirit.   My body is busy fighting something that tried to kill me, and it has taken a few weeks for me to realize instead of trying to ignore that fact, I should treat my body like it's trying its best to survive and thrive... and it can't win if I'm treating it like crap.

It's okay to cry, to get mad about the situation... but it's important to realize that I have no control over the situation (hard for a Type A personality who is used to being in control), but I do have control over how I treat myself, and I can make things harder for my body, or I can try and make things easier.

Easier seems so hard though.