After seeing my rheumatologist last week, I did a prednisone burst. And the difference was nothing short of amazing. I had 24 hours of feeling fabulous. Energy returned, headache left, balance improved, vision improved, tinnitis improved.
And then my son had a massive meltdown, and my stress levels soared. Meldtowns happen, but this was a bad one. It brought out all kinds of issues with my son, my daughter, their relationship to eachother, their father, their father’s complete lack of responsibility, or any idea on what he should be doing to support his kids, and, of course, my own failings.
Can you say snowball effect?
I realise I am afraid of my son sometimes, afraid of provoking him. When he is in a rage, he is frightening and very capable of hurting himself. He threatens to hurt other people as well, but I don’t believe he will. I am afraid he will hurt himself though. He banged his head against the wall repeatedly – hard – and he feels no pain when he’s in that state. He also cut his leg. He claims no memory of doing so, and I believe him. When he has these episodes of rage, he isn’t even there.
My daughter is afraid of him too. She doesn’t believe I can keep her safe. That’s hard to accept, but I can’t blame her. She’s being honest, and I have to listen to her.
The stress of the last few days have had a pretty large impact on my feel good status, however. While I am still way better than I was last week, I am feeling very tired. I think it’s fair to say that’s stress, and I’m flaring pretty badly for someone on 20mg of prednisone.
I can manage though. The nights are not nice, but with pain meds I get a few good hours.
My way of coping with the stress has been to power through my to do list, which is a definite plus. The strategy is to just keep moving, and not think too much. I’m in a circle that has no end, and no solution. We just have to cope.
I saw my GP this morning for pain meds, valium (because I’ve been using extra, not too surprisingly) and a referral to a new rheumatologist. He was very happy to provide the referral, stating this doctor is ‘the best’ and thinks a fresh pair of eyes is a good next move.
I told him about the prednisone burst, and he agreed I had no choice. I saw him two weeks ago and he said the difference in me between now and then is marked. He agrees there is something going on with me that isn’t RA, something neurological that prednisone improves, and flat out has no idea what. He checked back on my lumbar puncture results and said the very high protein levels in my cerebral spinal fluid mean there is inflammation in my, central nervous system and brain, and hence the prednisone calms down that inflamation and improves the symptoms. I have a lot of trouble thinking clearly sometimes. I have trouble planning. I get stuck on words, forget what I’m saying. And then suddenly my brain will clear and I’ll feel fine. I need to plan a week of menus so that I can shop, but that’s beyond my capability. So I will plan food for tonight, and shop daily until I can manage more. I also have to look into the home delivery options, so I don’t have to shop at all, but again, that involves more planning ahead than I can do right now, so I’ll just put out fires.
And we just manage the symptoms. He wants me to taper to 15mg as fast as I can manage, but recognises that I need to be upright and functional for the next few weeks at least. There just aren’t any better options. My body is breaking down around me and I’m not done with it yet!
I have massive bruises all over my legs. From the prednisone, from blood thinners. My GP doesn’t like it, but says its OK. Unlikely to be anything sinister, but we’ll keep an eye on them.
My GP prescribed my pain meds, noting that I am getting by on less oxycodone now, but more Valium. He understands that my little family is in survival mode, and he’s supporting me as best he can. Better living through (appropriate) pharmaceuticals. Far better to take a Valium to help me sleep, or deal with an intensely stressful episode, than to down a bottle of red. Having my GP fully on my side is essential right now, and I’m feeling much stronger for it.
This week is big. I have my ophthalmogist tomorrow, for my 6 monthly eye check. She’ll check out the blurred vision again, and find nothing wrong with my eyes again, I’m sure. I just hope the cataracts are stable and not causing the problems, because that would be a necessary reason to taper down on prednisone. And I just can’t do that right now.
My daughter has a school talent show night on Thursday. Her first performance on stage. She is playing drums in a band, and she’s incredibly nervous and incredibly excited. The day involves me ferrying her back and forth, and the night ends at 9pm. Very long for me. But Thursday being a great night for my daughter is the number one priority for me this week, and I will make it happen. Her father is coming, but he is unable to drive me, or her, due to his work commitments. At least he’s showing up. I will cancel everything on Thursday so that I can rest between drives and manage the day and night. And I can’t wait to see my daughter play on stage!
My ‘to-do’ list has 34 items on it. I’ve snoozed most of them to next week. The lawnmower probably needs looking at though. But in the end, its grass. Sorry neighbours, my front yard will probably look shit for another week. Big picture, meh! Deal with it.
Setting up a gym for my son is important. We’ll start working on that together this afternoon. I should try and get myself to my gym as well. I have all the gear I need to train here at home, but part of the value in going to gym is simply getting OUT of the house. Having been couch-bound for weeks, this house that I love can become a prison. There isn’t much social interaction at the gym anymore, which is sad. But its still great stress relief and I still enjoy the workouts. Mostly. And bizarrely working out does increase my energy levels, to a point. But first, maybe a nap…
There are lots of things that need repairing, returning, cleaning…all of it can wait. We have clean clothes and I will clean the kitchen, and get food for today. And that’s enough.
And I am progressing Elke’s application to become a service dog, and receive all her official documentation. THAT’s important. That’s something positive for me to focus on, and a project to progress with huge potential to improve my quality of life.
Oh and I have to track down what’s happening with my wheelchair power assist.
And anything else that I get done, is just a bonus.