It's 11.30pm. Still another couple of hours til sleep. But the house is quiet, save the gentle hum of the dishwasher.
Joel's next to me, his quiet snoring a comfort, the sounds of the night on which my body has come to depend. Ceiling fan on low. Air conditioner cutting in and out as the temperature changes - even the changes are dependable. And Joel, quietly beside me, dead to the all the world, but not to my movements on the bed. A movement too slow, too drawn out, and in his sleep an arm reaches over to rub my leg or my back; "I love you" maybe it's muscle memory talking. He always reaches out at midnight, touching to see if it is my feet or my head at the top of the bed - wanting to know if my body or my mind have mercifully let me sleep yet. It's never my head.
"Come to bed, my sweet", comes a sleepy yawn. 'You need to try to get some sleep'. But he knows - none of the drugs are working now. The muscle spasms won't let me rest, the restless legs syndrome worse than it's ever been, the self hatred most glaring in the quiet.
I'm so often on this page. Or at least, this and a dozen others. Always with dozens of pages open, tabs upon tabs in window upon window. Anything to stop my mind slowing down to focus on what it wants. What it knows. I'm here trying to write it, trying to write anything, trying to fake it.
I can't. It's the elephant in the room. I'm pathetic. I'm a swollen, pained, pathetic mess. For months now, it's been so fake. The depersonalisation are settling over me like a veil. I've had this before, a few times & even derealisation, but can usually, upon reflection, work out the difference. But now, I feel like maybe it's aspects of both. I can't tell right now what's happening. I think it's the former.
I feel like I'm completely withdrawn, cut off. I struggle to feel an emotional connection to anything or anyone. It's a flatness, a 'spaciness' that I can't shake. I can't concentrate on anything for more than a minute or two at a time. I keep coming back to blog here. Every day for the past two weeks, I've clicked on this page and started to write. Not once have I been able to follow through the thoughts.
I don't feel panicky or anxious even. Just....nothing. Flat, unfocused, inability to concentrate, loss of appetite, I can't remember whether I have taken my medication or not (that'd be fine if it were just panadol. But when it's stronger pain killers or anti depressants, or scarier-insulin, it becomes problematic. I've missed doses of my Cymbalta - swearing I've taken it, but proven wrong when the vertigo kicks in. Certain I've not had my insulin yet, I've doubled up three times now this month. I've screwed up my night doses more often than I can count. I've been unable to remember if I've taken my Mersyndol or Ibuprofen. I generally err on the side of caution with these and not take another dose. But it's so unlike me.
I forgot a Doctors appointment earlier this month. It was the first time in a year. In 09, when things were at their worst, I forgot several. Or backed out of several. I was terrified of leaving the house. I was terrified (even more so) of the sound of the telephone and could not pick one up. I couldn't open mail or even remember where I'd hidden it. So much so that I lost my license because I didn't renew it. I just shoved it in a draw, unopened where it sat for a year.
I feel like I'm there again. I missed this appointment in Alexander's first week of school. Brisbane had flooded that day, and I was fretting because our suburb was cut off, so noone could come get Alexander from school. I hated that his very first day of walking was going to be in a torrential downpour. Joel wasn't able to get back (he was taking me to the Dr, as I can't drive anymore because of my vision) and in all of the excitement I missed the appt. Apparently (I have no memory of this), I missed one last April too.
So I got a letter and it said that I was no longer accepted as a patient in the practice that had been seeing me for more than 15 years. I called. I pleaded. I tried to at least speak to my GP, to ask him about a specialist referral he'd written me and ask for a recommendation for another doctor. The receptionists won't even let me talk to him.
It spiralled. I had just finally had contact completely cut off with my former best friends. They'd moved on and made it clear that it was without me. In the end, the hurt was too much, the silence heartbreaking, and I knew I had to hide them on my Facebook. I couldn't keep replying to facebook statuses and getting ignored, sending them messages asking after them and being ignored. Watching them be together and missing them every day. So I deleted them. I can't describe how hard that was. I did a huge FB cull, but really, it was about them. As though somehow my heart wouldn't notice that I'd culled two of the women I loved most in the world, with the other 130 people who I don't interact with online.
Then my Dr dumped me. Then the sister in law I had such an incredible rift with moved back, only months after moving away. The heaviness moved in. Things feel less real. My pain is worse, but even I can see that my body is reacting to the tension, the sadness. And the more research I've done this month on inflammation, the more I have learned. My body, (aside from the FM and arthritis) is crippled under the extra weight that the Prednisone piled onto me. That's why I got so much sicker after stopping the Pred. That's why there is so much pain. It's the 30 extra kgs - too much on my already obese frame.
It's humiliating to write this. Just put it out there like this. But here's the problem. I can't budge it. Since stopping the Pred, almost 5 months ago now, my appetite has dropped. A lot. Which is to be expected. So I'm eating far healthier, and less. Though admittedly, erratically. But the weight hasn't gone. The fluid hasn't gone - my hand is still twice the size of the other every morning and every night. My feet are still swollen every night (my BP is fine). The extra fat at the back of my neck - the worst physical part of the Pred. Hasn't budged. They told me it would. That Cushings caused by Pred could be reversed once you stop the Pred.
Apparently, not for me. No period since October. No weight reduction, despite efforts to correct my diet. And absolutely a huge increase in pain. I'm never going to get better like this. I feel like there's nothing for me. I feel like I can't be hopeful. I'm pathetic. A ridiculous caricature of myself. Beyond hope.
Well. Almost beyond hope. I'll try to come back tomorrow. With a plan. Which hopefully (since I've deliberately written it on here, so I'll be accountable) I'll have already set in motion tomorrow morning, first thing.
I'm sorry I've been quiet. I'm more sorry I haven't been commenting or reading blogs. I just don't have the attention span. I read 9 books in January, devouring pages. I've read not a one this month. Not a single book. My brain just won't take it in.
I'll be back. I just had to start. Somewhere.