#beenrapedneverreported

This post may not be public long.

This year the anniversary of my rape went by relatively smoothly compared to the last few years, which often saw me spiral into a dark place. The further I get from what happened the better I’m *usually* able to handle the fallout. Don’t mistake “handling it” with forgetting or being ok. I’ll never really be ok with what happened to me but I’m trying. Everyday I’m trying to make myself a little more whole.

And then the world exploded with triggering posts, articles, etc…all about JG (I refused to write out his name lest this get picked up in a search for him, BDSM and people’s opinions). Also this is about my visceral reaction to the overwhelming discussion around this situation, which is beyond triggering for me and so many others. And all of this has made me reflect on what happened to me in a way I’ve never really articulated to myself before.

When I was raped, I lost a lot. One thing I never spoke about was losing my ability to participate in BDSM.

In my short time exploring and playing I’d experienced a few different dominants and not once did I experience abuse. Not once did I ever fear for my bodily safety. Not once was I ever worried I would be damaged by these men, my play partners, lovers, friends.

One partner would slap my face and immediately choke me – causing an orgasm. Another put me over his knee and spanked me so hard and long that sitting was uncomfortable for a week. Daddy used a heavy flogger and thudded on me until I was so blissed out, I couldn’t speak. Bruises, teeth-marks, and pink skin were pleasant reminders after my playmates left. Those were things I loved. Things that brought me peace, excitement, and pleasure.

My rapist knew about some of my experiences. We’d met years ago on Lavalife in the “intimate encounters” section. We chatted, cybered if you will, off and on for years. Timing was never right and something about him (his lack of ability to spell and distance if I’m honest) made me reluctant to want to take it further. In one of my more desperate times, I caved when he asked me to go out. I didn’t intend to sleep with him the first night..but he was cute and I wanted to. I figured that would be it but he called again and texted and wanted to see me. I was flattered. We went on a real date. He came back to my place again but this time – I wasn’t in the mood. He kept asking about things I’d done sexually, with whom, he wanted to see the toys I owned. I didn’t want any part of this but he was taller than I was and pure muscle. I kept talking, hinting I had an early day the next day…it didn’t matter.

When he spanked me it felt horrible. It hurt. It scared me. When he pinned me down by my wrists I struggled until my shoulders screamed in pain. I was terrified. These are actions and experiences I’d had numerous times before and they aroused me but not this time. This was happening against my will. In the morning he woke and restrained me to my bed and I literally feared for my life. This is abuse. Violation. Rape.

In all my encounters in BDSM, I was never scared like that. I knew that it would never be out of control. I knew that I was safe but I enjoyed being hurt. I enjoyed letting my partner consensually hurt me for their pleasure as well. Sure there was always the fear that came before trying something new – I liken it to the adrenaline rush you feel before a rollercoster drops. You kinda want to scare yourself but you agreed to getting on the ride.

People who conflate BDSM and abuse have no idea what they are talking about. You may not like it. You may not view it as empowering – it was for me. I got to explore my sexuality and my desires in a way I’d never been able to do previously. There is freedom in surrendering to someone mentally and physically.

As I write these words I feel the longing…

I was raped and I lost my ability to trust completely.

Days after it happened Daddy and I took a trip to Niagara Falls together. I was physically a mess. Barely able to eat. Constantly in the washroom. And worst of all, this man I loved could not hold me. I was almost repulsed by his embrace because my body was broken. My spirit was broken. My trust was broken.

We never played again – I couldn’t, and our relationship changed.

I’ve tried to engage other partners but I can’t bring myself to go beyond hair pulling, the occasional nibble or a light spanking. I’ve lost a whole part of my sexuality and I don’t know if I will ever get it back.

So yes, I belong to the large group of those who have #beenrapedneverreported because who would believe that I didn’t want to be raped after hearing the types of play I’d indulged in? The “he said, she said” would never have gone my way.

This post is just one more piece of therapy I go through in the hopes that one day, I might get my life back.

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.

It’s a lemon

My life for the next 2 weeks

My life for the next 2 weeks

If it seems too good to be true it is.

Sorry if that sounds incredibly depressing but well I’ve spent the day mostly spiraling into the darkness that is my depressive mind.

It happened with Enbrel – I thought it would be the drug that gave me back my life. It helped but not enough. This current heartbreak is over leflunomide aka Arava.

Arava led me on, within days I had more energy. My feet stopped looking like puffed up sausages. I couldn’t believe it. I made it through a whole week of work without a sick day – the first time since November!

For two weeks I actually thought, this is it for me – we’ve found the combination to my RA. I went to a Blodyflow class a few times with women from work. Yes, I had some pain and discomfort as I learned my limits with this new-found energy but I wasn’t wiped out like I would have been if I’d tried the same thing weeks earlier. My joints didn’t seem to achy afterwards, everything seemed to be going in the right direction.

Then two weeks ago I stopped feeling so great. I thought maybe it was just the wacky weather wreaking havoc on me, as per usual.

It wasn’t.

I started to notice little bumps on the back of my right hand but I didn’t think too much of it at first. Sometimes there is so much happening with my body unless it seems urgent, I just wait and see. Even now you can barely notice the bumps but I have been blessed with very smooth, clear skin for the most part so when the bumps started to spread I assumed it was just from dry skin (did I mention I like to live in denial some times)? Well the right hand joined in and by the time this past weekend was over both hands, arms and my thighs were covered.

It never dawned on me that this was an allergic reaction to Arava…until the doctor said so and to follow-up with my rheumotologist. I did follow-up. So I’ve discontinued the Arava and I’m on a high dose of Prednisone to help get the inflammation down. I also get to smear myself a few times daily in Eurax (no it’s not scabies – I had a freak out in the pharmacy when she said that).

So basically I’m back to where I was before. Arava “worked” but I’m allergic to it. I feel like the rug has been pulled out from under me (again). I was doing better, feeling better, hell I’ve even started to do things at work that I enjoy again (I hate the circumstances at my job but I love what I do).

Today, I feel like I’m trapped by this body. I want to trade it in or fix it but I haven’t had much luck with the latter. Some days I have hope. Today is not one of those days. I feel like it’s a lemon.

Comorbidity

Comorbidity.

That is an ugly sounding medical word.

I always knew what my comorbidity would be when I was diagnosed with RA – depression. I was first diagnosed with depression in 2000 and have struggled off and on with it since then so when I read that it was common for RA patients to become depressed, I braced myself for it. I’d been there before. I knew what it looked like.

January through August while I was sad about things and would cry occasionally (if you can’t brush your own hair, that will bring tears to your eyes) but I wasn’t depressed.

If I’m being honest, I’ve been on antidepressants more or less for the last 13 years, without them I have about a 3-6 month window before the darkness crawls back in.

So in August when my inflammation continued to increase despite methotrexate and sulfasalazine and the pain was unrelenting I started to fall into the darkness.

When I started to take Enbrel, I don’t think I realized just how much I expected it to do, to fix, to reverse, to heal. I wanted it to be my miracle. To take away the pain and the exhaustion and make me “normal” again. It doesn’t work that way, at least not for me.

One month – nothing

Two months – nothing

Three months – less visible inflammation but overwhelming exhaustion and not enough improvement for my liking

All of this coupled with my yearly bout of Seasonal Affective Disorder and the impending holidays in December I turned further inwards. I didn’t want to blog much. I wasn’t tweeting, though I’d check my TL multiple times a day, watching other people’s lives scroll by. Therapy was an hour of me saying, “I don’t think I’ll ever be well”. The first time I said that, something in me broke – in that moment I acknowledged my biggest fear – that I wouldn’t know what healthy felt like anymore.

I started to get angry and scared and hopeless.

I was angry with myself, my body and if I believed in God I might have railed at him a bit too. I became really resentful of people who’ve make peace with chronic illness – like how the fuck can you be ok with this shit (that’s the toned down version of what was in my head).

The handful of meds and vitamins and supplements that I take twice daily and the weekly injections were starting to wear me down. The frustration with work and my lack of accommodation. Being unable to make it through a 5 day work week, etc…the list of things that were upsetting me and adding to my fears of never being well just kept piling up.

Saturday nights were something I was beginning to dread – two needles one full of chemo and one full of protein inhibitors. Whee! /end sarcasm. A few weekends ago I went to give myself the shots and I had a mild panic attack. You do not want to have a panic attack when you have needles in your hand. I cried getting the needles ready and during the injections and for a good hour afterwards in bed. My shaky hands left me with 2 very ugly bruises on my upper thigh and an aching feeling that this was going to be my life for the foreseeable future.

Then I slipped and fell out of my bathtub.

That was my breaking point. When I went to get myself checked out – 4 days later – my family doctor and I talked about how I was coping. I wasn’t. So she reviewed my latest set of blood work – everything is down in normal range. With that she said people who suffer the comorbidity of depression often report worse stiffness and pain. At first I was annoyed – was she saying that this is in my head now?!?! But because I like her, I put that thought aside and listened. She told me to increase my vitamin D, start exercising and detouring on my way home at least twice a week on top of the prescription for an anti-psychotic used to boost antidepressants.

It was a total wellness prescription. At first I wasn’t buying it. The annoyance for being told things are in my head was hard to get past but I was comforted by the fact that my blood work was mostly normal for the first time in a year.

So with the new prescription added to the arsenal, I waited.

Other things began to turn around at the same time. Work picked up for me. I made it to a 2nd interview with an organization I would love to work for and I had a great chat with a recruiter that I’m now working with. So there was hope and optimism. I felt my mood making a turn around. Did that mean I wasn’t in pain? Absolutely not. I do think I’ve started to accept that some degree of pain and discomfort will be apart of my life from now on, just like the medication.

Then last week happened. I was full of energy I hadn’t felt in over a year. Bursting almost. I had a dance party in my apartment; I took extra time to do my hair, I had a spring in my step…that lasted all of 2 days and then the bottom fell out again. By Wednesday night of last week I was starting a flare…the burning and the swelling was back in full force. Thursday I took more pain meds in one day than I had in the previous 2 weeks but I had plans so I pushed through. I went to work, I kept my plans with my best friend (I did have a lot of fun) but at the end of the night I crashed. I was lying in the hotel room wishing a bucket of ice would appear so I could dunk my hands in it. I also developed a new pain. I’d been to a comedy show and I’d been laughing for about 2 hours straight. During that time I started getting chest pain when I breathed in too sharply. I would have been more freaked out but I knew it wasn’t my heart (since my echo cleared it last month) but it’s most likely costochondritis. Even now, I still get the occasional sharp pain while breathing.

I can’t help but feel like my body was leading me on and then reminding me that it’s in control. How does one not feel depressed about that?

Chronically Unhopeful

Over the last few months I’ve become someone I don’t like very much. I’m angry, guilt-ridden, depressed, scared and anxious constantly. I feel like I can barely keep my head above water most days.

When you’re diagnosed with a chronic illness like RA nothing is ever the same again. Someone should sit you down and just say it – it sucks hard. Bye bye pretty things, now you will be practical. Bye bye being social or dating or having sex without pre-planning and medicating for every activity. Bye bye not feeling like a specimen – poked and prodded by everyone and their uncle. Bye bye feeling like a person and not a set of symptoms and side-effects.

“Honour your feelings.”

That’s what my therapist said to me just before Christmas. I’ve been struggling with this lately. There are so many people in the online RA community who talk about “chronic hope” and being happy to live each day even if they are in excruciating pain, etc. I’ve never been completely incapacitated by my RA. I have a great medical team and access to financial support for the most effective medications for RA so how can I feel like my lot is so shitty? Others have it far worse than I do. My therapist told me regardless of where I fall on the spectrum that I’m allowed to feel everything how I perceive it and not to let other people’s experiences affect that.

That was a huge weight lifted off my shoulders.

You see, I am not chronically hopefully. I am not happy to be alive and in constant pain. I am miserable swallowing handfuls of medication morning and night. I’m disturbed by having to inject myself weekly with two different drugs. I am tired of seeing my GP, therapist and Rheumatologist over and over again. I don’t want them to stick another needle in my arm or x-ray anything. I want to feel human again. More than anything, I want to be well.

Honouring my feelings worries me.

My concern is that those feelings are rotting me from the inside out. I am not who I was 6 months ago and I’m certainly not who I was a year ago. My ability to empathize with others has been quashed. My coworkers have been sick lately and my boss had minor surgery and I could barely wish her well. I want scream at them to suck it up because they will be fine in no time; I however, haven’t been fine for over a year now. I hate my job. I hate the inconvenience of it at this point – I wish I could just focus on being well and getting better. I put in minimal effort, which is the opposite of how I am when it comes to my work. I just don’t care. Nothing really matters or means much to me anymore. (And yes, I acknowledge I am in the midst of an awful depression but I remain functional)

I am exhausted. Spent. Struggling to see some positive in all this but I can’t. The longer this goes on the more I feel myself pulling away from everyone. I feel like I have so little positive to put out into the world so I just don’t say anything. I don’t blog. I don’t really tweet. I don’t call anyone. I feel like people just look at me and think, “why is she still complaining?”, “She looks fine”, “It’s all just an excuse”, “She’s so depressing why can’t she just be happy?”

The list goes on and on…

I wasn’t even going to post this but I just need to put this out there. I’m not trying to bring anyone down or make anyone else feel bad but it’s so isolating when the community you’ve been thrust into is so unrelatable to you. I wish I could be hopeful but I’m not.

Isn’t It Ironic…?

My life has reached epic proportions of ironic in the last few weeks.

My Passive Aggressive Coworker is ready to give birth any moment now. Somehow it has fallen to me to plan, arrange and organize her work baby shower. Now I will admit that of late, we’ve been getting along better. She’s been making an effort to be a little more understanding and compassionate since I came out about my RA and I suspect her pregnancy related troubles (carpal tunnel, etc…) are softening her to my difficulties. All that said, we aren’t the best of friends. There is at least one person who should have jumped all over this experience to offer her workplace bestie a nice send off. So instead I get to pretend like I’m the caring coworker and throw all this nonsense together.

The better example of irony, however, is that I act as my company’s Return to Work Coordinator. It’s my job to create accommodation plans to allow people to gradually come back to work once they’re been injured. That is only mildly ironic…the true kick in the ovaries is that I am also responsible for researching, developing, and implementing the Accessibility for Ontarians with Disabilities Act including creating the company’s policy on accommodating employees.

In case you’re missing it – I asked for a workplace accommodation about a month ago from my boss verbally. No response. So last week I escalated it to an email request:

When we spoke previously about my illness and attendance here at work I mentioned the potential for and accommodation with the option to work from home on occasion as needed. As The Company doesn’t have an official accommodation procedure as of yet, I am hoping this email will be considered as a more formal request and a follow up to our discussion.

Having reviewed my attendance from January 1, 2012 until today I realise that I have taken 15 sick days; most of them unpaid sick days. I realise that this impacts the department tremendously; it has also had significant impact on me financially.

Working from home, only when needed, would benefit both The Company and me.  It would allow me to be more productive and reduce the negative impact to the department and ease the financial impact on me. It would also reduce the amount of time I need trying to “catch up” after I have been away from work leaving me more time to take on other assignments. This is particularly important in the RTW Coordinator aspect of my role – there are things that need responses in a timely fashion and being able to provide a response as needed would help the process.

Through all of the challenges that I’ve had this year, I believe that I have maintained an exemplary standard of work and have always ‘produced’ while continuing to assume new responsibilities. I hope that if you have concerns about my work that you would let me know and I will work to improve them.

I have been making up the hours and time off I have been taking for my appointments and keeping track of it. To date, all my appointments have been made up through coming in early or staying late as needed. I try to schedule my appointments to lose the least amount of time from work but sometimes, because of doctors’ availability, this cannot be helped.

I am currently following all the medical advice that has been offered and working with my group of medical professionals towards remission but there are no guarantees and certainly no guarantees this will happen in a timely fashion.

There have been many days when I have come into work and pushed myself to be here to the detriment of my health because I can’t afford to lose anymore time from work and because, unintentionally, I feel pressured to do so. I do suffer quite a bit in silence. Pushing myself today mean I have less available tomorrow and the next day, which is why often at the end of the week I have virtually no energy left.

I realise that allowing me to work from home presents certain concerns/issues.

You voiced your concern about privacy with regards to having me work from home. I would certainly never take Company documents or files from the office to work on them from home but much of what I do in the course of a day can be done with access to my email and files from the HR and Benefits folders. I realise that this is sensitive information but it also the information I deal with daily.

I am also aware that this will set a precedent as far as accommodations are concerned and I expect that it will be monitored closely and reviewed as needed. I would obviously need to inform you as soon as possible when I will be working from home, the hours I will be working and figure out what happens if I do not work a full day while at home.

While there are quite a few details to work through I would appreciate if we could open the discussion to address this and certainly if you require more medical documentation to support this request I am happy to provide that.

Thank you

Keeping in mind that email was sent over a week ago now. My boss continues to ignore it. Coming by frequently to make chit chat and ramble on about nonsense. Since then she has “promised” we would sit down and discuss it before it’s not as “simple” to accommodate as I think.

She rhymed off budgetary issues and other employees wanting the same “perk”, “just ’cause”. I threw back immediately that this request is not “just ’cause”.

*crickets*

I am trying not to let myself get bitter or frustrated or spiteful but dealing with my boss who seems to be hoping that I “forget” my request or end up in remission before they have to accommodate me, it makes me want to scream. I am the first person to admit that advocating for me is not my strong suit but I’m not sure how much clearer I need to be at this point.

My frustrations are compounded by instances like yesterday at lunch. I wasn’t feeling great with the weather that had rolled in and I really just wanted to sit and have a quite lunch alone. Instead I sat with my boss the PA Coworker and her replacement, the new girl. During lunch our boss expressed her deep concern for the PA Coworker’s pregnancy related carpal tunnel. Now I don’t have a problem with that at all – I express concern to her as well. Her hands and wrists are far more swollen looking than mine. My issue comes in when listening to my boss basically faun over her. The PA Coworker’s doctor has said the condition will most likely fix itself a few weeks after she gives birth. She’s not dying, it’s not a permanent condition and the only thing she’s been advised to do is wear a brace. So I listened to that and said nothing. Then as we were leaving the lunchroom together another employee thanked me for the pen I gave her this morning. I’d meant to order a large grip pen but I’d gotten the wrong one and it was a slim silver pen that was pretty useless. Probably didn’t cost more than ten dollars total. When I relayed the story to everyone my boss quipped that she would have to increase her supply budget because I was special ordering stationary. It was a little, flippant comment but it was upsetting.

The reason I have to order a large grip pen is that when holding a normal one to write – and yes, when I am working on trying to flesh out a policy or reading long documents I like to make handwritten notes – my hand starts to cramp severely in just a few minutes.

I am completely disengaged from work at the moment. I spend the majority of my time finding ways to accommodate other people at work and I can’t get the time of day.

Yes, I absolutely have legal avenues I could pursue if they deny me accommodation but so far there hasn’t been a “no” just a delay in response while my boss thinks about it.

From the Ontario Human Rights Commission website:

“The most appropriate accommodation must be identified and implemented short of undue hardship. Deciding what is and is not an appropriate accommodation is a separate analysis from an undue hardship analysis. An accommodation will be considered appropriate if it will result in equal opportunity to attain the same level of performance or to enjoy the same level of benefits and privileges experienced by others, or if it is proposed or adopted to achieve opportunity and meets the individual’s needs related to the relevant Code ground. The most appropriate accommodation will be the one that most promotes inclusion and full participation, and effectively addresses any systemic issues.”

Nothing I have asked for would come close to meeting the “undue hardship” standard anywhere. And if there is a more appropriate accommodation, I’m more than happy to discuss it but like I’ve said *crickets*

The chances are, I will not pursue any legal action or file a complaint ever because that’s not my style.

Take note, this is *not* how to treat your employees with a disability.

One year later…

Trigger warning – the links lead to posts which describe my rape

I wish I could pretend September 17th doesn’t exist or that it was like every other day…only it’s not for me. Maybe it will be again in some distant future but for now it’s a day where I try not to think of Dave Martin and everything he took from me.

If I am going to be honest, I still think about being raped every day. It’s not always a vivid reliving of what happened (thank goodness for that!) but there is at least one daily moment where the impact of that night sends ripples through my present.

I want to coherently explain all the ways this changed me but right now the emotion is too much…so for now this is a placeholder until I find the words.

Big Flare, Bigger Decisions

My most recent flare has unleashed never-ending questions and given rise to a level
of anxiety I haven’t felt in a long time.

– How much longer will I be able to live alone?
– How much longer will I be able to live in this apartment? (No elevator, just
stairs)
– How am I going to take care of my hair? Black hair is quite labour intensive
and requires different care at different times. This week, I’ve barely been able to
brush it
– Will we find medication that will help?
– Will I ever feel good again?
– Am I desperate enough to ask my Gay BF to help me clean this weekend (If you
could see my kitchen sink, you’d know I am)
– Am I desperate enough to ask him to seriously consider living together? (I’m
getting close)
– How many ice packs should I buy (two isn’t enough)
– Should I get another heating pad?
– Am I overreacting? (Then I yawn and feel the incredible pain in my jaw and
know I’m not)
– Am I being whiny?
– Should I even be dating now? Or trying to have sex with someone?  (The thought of someone touching me just seems so painful right now)

This past week was also the final nail in the coffin of whether I will ever be a
mommy. Until this week, there was a 5% chance I wanted to have kids of my own
and now that has been reduced to 0%. Between my depression, which has me
worried I’ll be that small percentage who suffers from postpartum psychosis
and now my arthritis which is making it difficult to care for myself, I can’t take
the chance. If I can’t care for myself properly, why would I bring a child into a
situation where I couldn’t be the best possible mommy I could be?

This decision has been a long time coming. And truth be told, I’m not really sad
about it. Actually, I feel relieved. I think I’ve been looking for a reason to justify
why I don’t want kids for a long time (I know I shouldn’t need a reason but
society isn’t quite there yet).

So Tuesday when I go in to talk to my GP about birth control, I’m going to talk
about a permanent option. I don’t know how she will respond to that thought but
she has been wonderfully supportive over the past year and a bit since she
became my doctor and I love her. Really. Especially lately when I usually end up
turning into a sobbing mess in her office. This appointment will probably be no
different. For now, I will probably go back on the pill until we can find a good
time to deal with surgery.

Bringing (My) Sexy Back

Finding my way back hasn’t happened overnight. There have been stages…oh so many stages:

Revulsion/Disgust
Emotional distress
Anger
Fear
Force
Denial
Avoidance
Desire

And that’s where I’ll start. Just over a month ago I was texting with a Twitter friend and suddenly the conversation became a lot more flirtatious and quickly became sexual. For the first time in months my brain wasn’t freaking out. There was no adverse reaction. My body was aroused and I enjoyed myself.

My friend didn’t know (well he will if he reads this) that night helped bring back my desire. Something stirred in me that I was relatively certain was never coming back.

The next day I called Paul and we had phone sex for the first time in months. Before my rape, we’d been trying to get time together to consummate the flirting and driving each other crazy that had been happening for years. That came to a grinding halt last September. To say he was pleasantly surprised was an understatement, as was I.

I realise now that sexting and phone sex were safe ways to start exploring my sexuality again. I could be aroused in a safe way. No one was touching me. No one could force me into anything. The distance with my “partners” made these modes of sexual expression ideal as a way back to sex.

Still while enjoying other people’s words and fantasies through my phone is lovely, I want more.

On my second date (which I need to write about) I made out with a real live person. He was practically a stranger to me but we were in public and he asked me very politely if he could kiss me before he did. Asking for my consent before he kissed me or touched me in any way went a long way to making me comfortable with what happened that night.

So my desire is back. I want to be physical with someone again I’m just terrified about putting myself in the position where I might actually have sex with someone. That day is getting closer and there is a possibility it could happen in the near future. I want to be ready for it but I’m not sure I’ll ever feel fully prepared for it.

The On-Going Battle…

I wonder what’s next…

No, I don’t imagine it’s something glorious and wonderful (my perfectly honed cynicism wouldn’t have it any other way). Truthfully, I’m terrified I’m going to fall down and break something at the rate I’m going.

So to update the war within my body – it has finally been confirmed – I have Rheumatoid Arthritis. Unfortunately, my levels of Anti-CCP indicate that I have an aggressive form of RA, meaning it needs to be treated more aggressively.

As my rheumatologist was explaining everything, I could hear her and I understood what she was saying but it was surreal. So in 45 minutes my entire regimen was changed. I was prescribed a stronger Disease Modifying Anti-Rheumatic Drugmethotrexate. I was also placed back on steroids to help control my inflammation, which has been getting progressively worse since I stopped taking them in April.

I had to buy one of those weekly pill cases with the AM and PM sides so I can organise myself.

Morning: steroids, medicine to protect my stomach against the irritation caused by the steroids, folic acid to replenish and enhance the effects of the methotrexate, calcium & vitamin D to reduce the effect of the steroids on my bones, and Omega 3.

Afternoon: anti-depressant (which was increased a month ago – it still might not be enough), and a second dose of steroids if I need them (I’ve needed them).

Friday night: a subcutaneous injection of the methotrexate (did I mention I’m not a fan a needles?!?!)

I how have a right wrist splint. I bought Birkenstocks to wear this summer instead of my pretty sandals. My nightly routine now involves ice packs to reduce the swelling in my joints and heating pads to help with stiff muscles.

My body is fighting itself – literally. RA is an auto-immune disease so I am trying to fight my body back. Some days I don’t think I’m going to win.

I know this sounds like I am throwing myself a pity-party or attention seeking but when you are in chronic pain it is impossible to forget for very long. In 5 months my body has completely changed and I no longer know what to expect.

There are a few unintended consequences of arthritis. Falling down or going over on my ankles. The increased inflammation makes my joints less stable so I’ve had to give up all shoes with a heel for the moment because it feels too much like taking my life in my hands. Standing to wash my dishes is draining. Carrying my laundry is painful. Even making my bed can be tiresome. I had to buy a jar open, a special can opener and a potato peeler just so I can get things done in the kitchen with less strain on my hands and joints. Things like that are hard. Just making changes you didn’t think you’d have to, coming up against limitations you’ve never had before.

Worst of all this is taking a toll on me mentally and emotionally. On my best days, depression is never far away but when moving is painful, when you are constantly exhausted, when you struggle just to make it through the simplest tasks of the day it wears you down. Sadly, this comes at a time I am looking to finally confront what happened to me last fall. All of that bundled together led to my depressive/anxiety-attack a few weeks ago, which saw me completely shut down. I haven’t experienced something like that in years.

Everything that has happened over the last few months reminds me how alone I really am sometimes. My support-system is a bare-bones operation most days consisting of two other people and then my team of medical professionals. And some days all I want is to curl up next to someone and be held.

The battle wages on…