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?