How I Cope

I realise that “self-care” is bandied about quite often but I think so few of us really practice it in a way that is healthy.

I’m the first to admit that I don’t think the way I do self-care is ideal. Let me explain.

We all have issues – things that upset us, that makes us mad, that trigger us (I separated those things because I believe that people forget they are not the same. That is a completely separate post I have brewing.)

These last few months, maybe even longer, I’ve noticed myself pulling back further and further from things that I find distressing or harmful to my mental health. This means less news, less twitter, less tumblr, less getting engaged in any and all social media, I even find myself refusing to engage in person on things that are too sensitive for me.

After everything I’ve dealt with, am dealing with still, over the last few years – my health, rape, work, etc. – I don’t have room in my head or my heart to take on the extra stress. To fight the good fight as it were. I see people on social media who run headlong into the muck and mire day after day and I don’t know how they don’t burnout or break under the weight of the crap that comes their way.

In order to keep going, to keep putting one foot in front of the other I need to look at puppies and shut out a lot of the ugliness in the world. I am not unaware of it by any means but I find my life is a lot more headlines than in-depth stories. I don’t want the graphic details. I realise there’s a lot of privilege in this approach. I can bury my head in the sand and pretend the horrific details don’t exist.

I won’t always be this way – but right now – caring for me, making sure I’m functioning as well as I can is how I cope.

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Two years gone…

*Trigger warning – rape*

And if I close my eyes I remember every single detail.

I remember every no I said, screamed, whispered, begged and pleaded.

I remember being held face down on my bed.

I remember lying beside him, sleepless in my bed all night.

I remember the relief of him waking and wanting to leave immediately.

I remember the nausea.

I remember being unable to keep food in for two weeks after.

All I wish I could do is forget.

But my body and my mind do not forget.

News or tv or movies or horrifically triggering jokes are everywhere. Some days I can avoid them. Some days I am fortified against them but others leave me feeling vulnerable and terrified. I wish this wasn’t so but it is.

Two years on and the echoes of what my rapist did can derail me.

Confused and Confounded

I am making one of the biggest changes of my adult-grown-out-of-school life. A new job. It’s a celebration. It’s awesome! It’s incredible! I am bouncing off the walls excited for Monday morning.

Everyone who ever sent a “hang in there” message as I struggled with my old job; who congratulated me on getting my new job; and who rejoiced with me on my last horrible day, you are all amazing and wonderful and I love you.

When I’ve crawled into bed these last few days, I’ve just felt like even thought things are going so well and moving in the right direction for the first time in ages, something’s missing.

Someone.

I really want someone to share this with me.

My friends and family have been incredibly proud and happy for me and we’ve celebrated but what I need now is still missing.

It funny because of the last year I’ve wished for some one by my side many times, mostly to help shoulder the immensity of my illness. Someone to hold my hand when I get bad news or take care of me when I’m sick but this is the first time I can think of that I want someone by my side to share in this overwhelming happiness.

So right now, I’m so happy I’m sad. Truthfully, I’m just lonely. It’s the big things that remind you, you’re by yourself.

State of my Union

Before I jump into the heavy topics I want to give a little life update for you:

Almost three months at the new job and I am still loving every minute. It is an incredible place and I feel like I’ve been there forever. I’m a part of a team there. My opinion and experience count for something and are validated. It is where I need to be and the best career decision I’ve made since I quit grad school. (oh and playing with puppies as needed to relieve stress helps.)

I finally have a car again after almost 5 years without one. FREEDOM!

Healthwise…I continue to struggle a little but the decrease in work stress has minimized my pain levels and Rheum activity but it’s still difficult. I’ve only had 1.5 sick days since I started which is an incredible improvement.My annual bout of SAD is back. Using my UV light, trying to “exercise” a bit, and all the vitamin D can’t save me, so I’m adding another anti-depressant.

Dating is the usual.

I’m trying to be more social and getting out there which is helping.

All in all I can’t really complain, life is good

“Sunday night” Anxiety

Canada day followed by a vacation day means Wednesday is my Monday and as such I’m falling into my pattern of “Sunday night” anxiety.

Every Sunday, after struggling through my injection side effects, I feel the anxiety creep in. Work in the morning. Nothing is scary these days.

I don’t worry about losing my job, I’m certain my boss is aware I will try to take her and the company down if there was even a hint my job was in danger. That said, I am so unhappy there, so stressed (because of the treatment I received not the workload). I barely stretch myself anymore. I’m putting in what I need to to get by and that’s all I can do. That makes me miserable.

This state of perpetual stress makes me feel unwell. It exacerbates my rheumatoid disease and my depressive symptoms. It’s such an unhealthy environment for me I need to get out. I count the minutes when I’m at work. The seconds sometimes and I bolt at 4 PM on the nose everyday because I do not owe my boss or that company any more of my time than I’m required to work.

Friday I was made to watch a video about psychological standards in the workplace. My boss furiously nodding in agreement with things when all I wanted to say was, “do you see how this was like my situation at all?!?” I truly believe she’s oblivious, which sent my blood pressure through the roof as I listened to the webinar.

An acquaintance was telling me about all the accommodations her company just offered to her and to say I’m envious would be an understatement. After everything I’ve been through this past year wrestling with the stress of work on top of everything else has probably shaved a good five years off my life.

So to help myself I sent out 3 more resumes last week. If I get an interview I know I could make an impression. So keep your fingers crossed.

Les Liaisons dangereuses revisited

If you’ve followed me here from my previous blog none of this will seem remotely shocking. Actually it just seems like I’ve come full circle at this point (or at least I’m attempting to).

I’ve had all kinds of sex: loving sex, angry sex, breakup sex, make up sex, kinky sex, etc. for the last two years sex has been…I don’t know…tentative…reserved…safe. (That is not a criticism nor meant to disparage any of the lovers I’ve had. Bless them all they got me through an extremely difficult period sexually and I am grateful).

As time goes on I’m learning I can trust people with my body again. I still need time but I can let go again. Enjoy myself again – literally.

One little thing that happened recently while having sex unleashed a lot of desires I thought had long since been been extinguished – being bitten. When you’re with a partner who actually enjoys biting well that’s something completely different than someone who does it because you’ve requested it.

The first time there were nibbles or nips that were more that little love bites so as we were laying there afterwards I teased him about being a biter. I confessed nothing, certainly not my intense love of being bitten. Though I later shared something I’d written about an extremely intense biting experience from a few years ago. I still have evidence of our second encounter, one of the perks of the experience, a lasting reminder.

The rush that comes with biting, the arousal, the pain, the intensity, all of those things came rushing back and I wanted more. Not just biting but those things that I used to enjoy or that I was starting to enjoy when everything changed.

I have an entire box full of toys that have been gathering dust for about two years now. Some actually require a partner to use but I haven’t really been into allowing them out of their hiding spot.

I truly thought some of my darker desires would never come back. I thought that I’d never want those things again that it wasn’t safe to want them. Just before I was raped we’d been talking about toys and experimenting and dabbling in dominance and submission. I don’t think I realized until recently how that conversation and what followed killed all of those urges instantly and made them terrifying to me.

I’ve never been a “everything happens for a reason” person but I think stumbling onto someone who had that particular kink at this particular time is just what I needed. One step closer to reclaiming all of my sexuality. Piece by piece.

All the Things

Flippant comments can some times unleash a whole pile of emotions the speaker could never intend. No fault of anyone really but when you’re the one piled under the emotions it’s hard to get perspective.

I would love to travel. Anywhere. Everywhere. It seems like everyone around me is going somewhere. Visiting friends. Visiting family. Sightseeing. You name it.

I admit to envy. A lot of envy.

I have my two weeks of vacation but I’m hesitant to actually use it in case I need time off to interview or if I’m lucky enough to actually quit this year it will be carved out of my last pay which at this point I can ill afford.

Travelling is a luxury some people take for granted. I’d love to book a trip to Paris but on top of the money I don’t have because my health expenses suck up a lot of my formerly disposable income, there’s my health. I worry about taking a trip or being away from my apartment too long. Everything I need in case of a flare is here: drugs, heating pads, ice packs, my bed. Sure most of those things exist anywhere I want to go but there’s more. What if I don’t have the energy to do the things I want to? Or see the places or people I want to see? What if I’m having a flare and people don’t understand? What if I get hurt while I’m away? All of these questions keep me close to home.

Last year The Gay BF and I went to Boston for 4 days and that’s as far as I’ve been since I’ve been diagnosed and I almost didn’t want to go. I was scared to be away from my comfort zone. I was scared I’d just be a drag. (And even though he’ll never admit it I don’t think daily naps where *really* what he wanted to do every day).

So real travel plans are on hold for me right now. I just can’t bring myself to go.

***

I saw the light at the end of the tunnel. I interviewed and was offered another job. I had practically moved back home and reinvented my life when I got the call – the company had changed their mind about what they were looking for. Completely unrelated to me or my references.

I actually wailed on my floor that night. Just lost it. I thought I had a way out of my horrible job situation and then pouf! Gone. Back to the shit at my job.

Thankfully, I know now that my interview skills are spot on and that I’m worth at least another 8k than what I’m making now. Tangible proof to all the ranting I’ve been doing about being undervalued isn’t just hot air.

***

I switched to Cimzia almost five weeks ago now. I’ve had the first two loading doses as well as continuting with my 1CC of methotrexate. Except for loss of appetite I’ve had no negative side effects. More importantly, I have energy. Lots of energy. I’ve been social and I’ve been cleaning (scary stuff). Yes, I’ve overdone it a few time and paid for it a little but all in all this is a huge improvement. Pain levels are mild to moderate – made worse by either over doing it or the wacky Southern Ontario weather. Otherwise I have almost pain free days.

Let me repeat this:
ALMOST PAIN FREE DAYS!!!!

***

I’m also not going to kiss and tell but I am dating again. That feels good too 🙂

Rheum and the Single Girl

I’ve lived on my own since 2007. Before that there were roommates, a common-law spouse, and of course family.

I’m an introvert. There is a part of me that likes to be alone. A part of me that needs to be alone to recharge, refocus, and to just be. Even when I live with others, there are times when I need to close my door, lie down and read or listen to music, etc, alone.

I’m a pretty tough cookie but trying to navigate my way through my diagnosis, treatment and day to day living, sometimes I don’t want to be alone anymore.

Sometimes I wish I could come home to someone who could be here to help support me. To help share some of this burden with me. To help me enjoy life. To help me remember when I’m stuck in my bed that there is more than just this body I’m trapped in. To help clean up around here. To hold me when I’m having a bad day.

That’s the chronically ill part of me – in some ways I think that part is selfish. How could I ask someone to share what’s been given to me? Who would volunteer knowing there will be many bad days ahead; knowing that my health is costly; that my body is limited; that there will never be kids or grandkids though I welcome a puppy…

The 34 year old woman in me wants a partner for all the reasons anyone wants one: love, happiness, mutual growth and understanding, respect, comfort, desire, sex…I want a relationship. I want someone to ask me out on a date – not simply as a preamble to sex – but as a way to get to know me. I want someone to hold my hand (but not to squeeze it too hard). I want forehead kisses and couch snuggles. I miss all of those things tremendously.

My depression and rheum-riddled body notwithstanding I think (some days when I catch myself in the right mood) that anyone would be lucky to have me. The me without the two things I can’t divorce myself from – my mind and my body. What a catch!

This is sort of my beginning post on relationships, dating, sex and rheum. I feel like so many bloggers and even resources for rheum patients talk about those things if you’re already in a relationship and how to handle the difficulties that arise but what if you’re still looking? How do you navigate things then?

I have no answers, only ramblings and my own feelings on the subject.

Selfish* condescending and unapproachable, that’s me!

Those are not words I feel as an HR professional should be written on an evaluation, and yet I’m staring at them on mine.

They were accompanied by a book on emotional intelligence.

I do not lack emotional intelligence. I lack giving a fuck. There is a big difference.

I am half inclined to just be more condescending, sarcastic and unapproachable because at this point getting fired would actually be a wonderful thing. Hell I’d quit if I could!

The gist of my appraisal is this: you’re a great employees but you’re sick and that’s too much for us to deal with so get better. If you get better we’ll let you do all kinds of things. Oh and we won’t accommodate you to let you work from home because a lawyer said not to but it’s your fault people have to pick up your slack.

Oh and apparently my coworkers offered feedback about me – I didn’t realize that was an option. I’m tempted to make lists and post them for everyone to read maybe suggest a few of them grow up and act like adults instead of telling my boss.

I am trying to vent all my hostility and anger so I can walk into work on Monday and not cut anyone. I am trying to vent all of this hurt and ager and frustration because I’ve had a headache for 24 hours not that Tylenol 3s, wine, coffee, water, sleep and a orgasm or two have no been able to shake. I am trying to get this all out because I cannot for the life of me figure out how the fuck I got here.

No one of the coworkers I work closely ever asks how I really am. The one person who does, is like my work mom. She checks in if I’ve missed a day, she actually wants to hear my answer if I say I’m not doing well…none of my immediate coworkers ever ask if I’m well. How I’m really feeling. How am I handling things. Do I need anything? But no, I’m the one who needs to put on a happy face and make everyone else think I’m warm and fuzzy. You know when it takes me 1.5 hours to get out of bed because I’m exhausted and I need to stretch just to be able to waddle to the bathroom in the morning, I’m not the most chipper. I try but I am in pain. I am always running on empty.

Instead of anyone trying to help me, I get piled on for not being able to be “reliable”. The ways in which that actually tears me up….

So I need to go to work on Monday, pretend that I’m happy about this shit that’s been dumped in my lap and smile.

Welcome to HR.

*sorry in my rage-writing earlier, I misquoted – I am “sarcastic, condescending and unapproachable”. I apologize for my earlier mistake. Selfish is implied by the way I put everyone else out.

#Scintilla13 – Fix You

The Scintilla Project

Today’s prompt: Talk about a time when you were driving and you sang in the car, all alone. Why do you remember this song and that stretch of road?

***

I’d driven right from work Saturday afternoon to spend the night with him. This had become the norm for us, an evening spent together with me leaving early to head back to work (in another city) before heading home (to yet another city).

That night, we had one of our epic-awkward-painful-fights where I wanted more and he responded, “I can only give you friendship”.

I stayed out of the couch for the first time that night.

The last thing I said before I fell asleep was, “Why can’t you love me?”

I called in sick to work hoping that if I stayed, if we talked, somehow things would get better. Somehow he’d realise his mistake.

Instead after 2 more hours of fighting and hurting each other I finally left.

Driving home on the 401 I was listening to my pink iPod mini (circa 2005), named Cooper, when “Fix You” by Coldplay came on. Something in me came undone. Every word was piercing my soul as I sobbed along. The tears wouldn’t stop. I was shaking and crying and singing and trying not to cause an accident but none of that stopped me from listening to it on repeat for my entire trip.

A couple of years later at a Habs game, I burst into uncontrollable tears. I was trying to fight it but the feelings came rushing back. “Fix You” has been the Habs opening song for years now. Today there are no outbursts just a little twinge,  just a flicker really.

When you try your best but you don’t succeed
When you get what you want but not what you need
When you feel so tired but you can’t sleep
Stuck in reverse

When the tears come streaming down your face
When you lose something you can’t replace
When you love someone but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

High up above or down below
When you’re too in love to let it go
If you never try you’ll never know
Just what you’re worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears come streaming down your face
When you lose something you cannot replace
Tears come streaming down your face
And I

Tears come streaming down your face
I promise you I will learn from all my mistakes
Tears come streaming down your face
And I

Lights will guide you home
And ignite your bones
And I will try to fix you