I’m not posting much and what I’m posting is, as always, focusing on the positive things I am trying to do to get better. I’m not ok though.
I have PTSD. I accept that now. I’m working on that with DR Mike.
I am in severe pain daily. I have about two hours of functional time and it’s keeping us afloat. That functional time is still the bad pain, but I can work through a lot of bad pain. More than most. Which is not arrogance and its not a good thing, because my ability to function has led to many a medical professional and friend deciding I’m fine or even lying. But the upside is that I can get out and do things and then come home and collapse again.
I avoid people. I ran into a friend at the local shop and broke down. Over mandarins. She didn’t know what to do and who could blame her.
I need some of that two hours functional time to do physio. Most of my doctors believe that I had some kind of cerebral accident, but not all. No one thinks it was a migraine anymore. My left side is ever improving, but the pain is consistent with central stoke pain. The other symptoms are improving too. Most likely explanation is that it was a mild stroke deep in the brain stem, where my previous infarcts were, where I have a venous malformation, the kind that bleed sometimes, but I wouldn’t dare say that aloud. Panic is rising just from writing that down…because of the way I was treated by a friend. I am not a liar. I’m wrong on a regular basis…but I’m not a liar.
A friend on this page sent me a few studies that show that around 30% of small strokes deep in the brain stem are missed on MRI. It’s plausible. But I can’t think about it because just thinking about it causes that panicky feeling to rise. So I’m focusing on exercises, and movement and function and recovery. I don’t care what happened. It was an after effect of the surgery, but it wasn’t the worst after effect.
The worst after effect was losing 2 litres of blood and the intense pain that I had to endure. I would rather die than have to live those five days again. And THEN as I was starting to feel better, my body hit its limit and broke down and I almost died. The transfusion saved me, but by then everyone was tired of my whining. Just as I was hitting the very worst of the crisis, the people closest to me tuned out.
I try to put it all behind me but strange things cause flashbacks. Seeing my ex husband is extremely difficult now. Other people too. Facebook posts. I’m not online as often, except to learn about making jewellery and Im hoping to do a silver smithing course soon. Probably not realistic, given my hand function, but so what. I do impossible things most days.
I try to stay in the present moment. The worst pain is back to being my spinal and hip pain. Hip replacements are forever off the table, as are NSAIDs. Knees, hands, feet all join in every night. I used to be used to this pain but I don’t want to get used to it again! All that smiling and making the best of things got me nothing…even turned me into a pariah. I called my rheumy and she actually called me back for once. She’s insisting on an MRI still but she said she will apply for Cimzia. Maybe in six weeks I’ll have it. I have that long to deal with the weight gain issue.
I never ridicule other people’s psychological problems, their fears and phobias… snakes, spiders, needles, heights…weight gain causes me serious distress. I am body dysmorphic and I had anorexia and bulimia for many, many years. Until my late 20s. When I’m under high stress those issues lurk.
The ptsd is worse though, far worse. I am not sleeping, I have nightmares, I watch tv shows and am suddenly triggered by scenes that take me back to the pain of that dark hospital room where I was left in agony, or that night watching the blood bag hanging and wondering dispassionately if it would save me or not. Or to the days after that, where I was so completely and utterly alone.
I am impulsive, even reckless, and swing from trying to be ugly to wanting to be beautiful. I think of old friends and wish I could see them again, yet everything I do is designed to keep people at arm’s length. I am hypervigilant and I blame some people where I have never blamed other people before.
So I’ve found an interest in creating jewellery and am trying to focus all the internal chaos there…and when I am absorbed in hammering and stamping and reading and learning I am calm. I have a goal with an open ended date. Its good. There are no consequences. No way to fail.
Right now it’s well after midnight and my heart is racing. It races every night. The pounding keeps me awake. I’m on high alert whenever I lie still. I can’t relax. I can’t sleep. I play YouTube videos, mindfulness, meditation, soothing sounds. I usually drift off around 4am and get up at 7am. I need sleep, but the meds don’t get me there.
And I stay quiet. I don’t know what to post, where to take this blog, if to take this blog anywhere, where to take anything. I appreciate the very few friends I have, but I seem to alienate them without even trying. I think they understand because they are kind. But hibernating is safest. I don’t want to upset people or lose the people I still have. I’m not communicating well, to say the least.
I don’t want to just post misery…I don’t want to worry people. When I was in hospital I tried to lighten the mood by posting funny things…bedpans and overflowing showers and such. That was misinterpreted badly. I knew that people far away were worrying about me, and they could do nothing. I remember posting on a small fb group of tight RA friends who supported me thru the very worst moments that I would find something positive to post and then stop posting, stop crying for help.
When you’re at your absolute worst and you’ve been broken down to your most base elements, your most raw emotions, your true colours show. Some people cry, panic, get angry, blame, scream…I thought of others. those were my colours. I tried to stop people worrying, cos they were so compassionate, but couldn’t do anything to help. Too far away. So I tred to find the funny, the ridiculous. Break the tension. That’s who I am. At beyond rock bottom, and not at all sure that I would ever make it home again, or see my kids again, that was who I am. I was thinking about other people, because they were thinking of me.
And it was clear that the people who could help weren’t coming. But still, I hoped. After I crashed and needed the transfusion one person visited me…my ex mother in law. The last person I expected. But she came. She sat with me and we talked and she just stayed for a while. She gave me a teddy bear and I hugged it for the next three days. And then I went home, and I hugged it for the next few weeks. And once I was stable, home was the only place I could recover. Stuck in a chair for two weeks, moving only for bathroom trips, on crutches and in a chair, relying totally on my kids…but I was home. With my kids. With a future ahead. One that’s still unclear, but it is a future.