Ok, so last night life imploded. Again.
I have to write this down cos I need someone to talk to, so dear blog, you’re it. And also, so I can read this back in two weeks and realise that things are looking much better, and really appreciate how much better they are!
We’ve just come back from a few days at the beach. Which we all enjoyed…my son, my daughter, and myself. On our return I needed more pain meds, and I went into full body megaflare. But that’s to be expected. I knew that would happen. It’s the price of living life, and it’s worth it.
What I didn’t know would happen is that my son would have one of his mega-meltdowns. He’s 15 and on the Autism Spectrum (Asperger’s Syndrome – the other AS). He is prone to fits of rage, and sometimes violence, but he has been relatively calm for a few months.
That changed last night.
He suddenly snapped, instantly furious, and attacked the cat. He picked him up, and twisted him violently and then threw him to the ground. I know he didn’t mean to be that rough. He just lost all control. Luckily, the cat landed well and ran for his life.
That’s a first.
I have never seen my son be actively cruel. I have never seen my son be physically violent to anyone, person or animal. That’s a new line that he has crossed, and it’s not a good one. Once these lines are crossed, the ‘taboo’ is broken. And they get crossed again. And it gets easier and easier to do what was once unthinkable. De-sensitisation in action.
He raged for 20 minutes, and ultimately shut himself in his room. He lay on the floor against the door, blocking anyone to enter except me. When he’s in this state he cries uncontrollably. He rocks. He bangs his head against the wall. He hates himself. He hates life. He’s inconsolable. He has self-harmed in the past. He has threatened and play acted suicide attempts. I take it seriously. I have to.
All I can do is sit with him and calm him. Run my fingers through his hair and hug him tight. That’s both an act of love and a sensory therapy. The firm pressure is calming for people on the spectrum, or anyone in distress, really. The tight, enveloping pressure is comforting. Many people with ASDs also have sensory processing disorder. When he was younger I used to use weighted blankets, and when he was smaller still, I’d wrap him in up in a large baby’s blanket. To calm him. As he got bigger, I’d give him bear hugs. Tight. I still do. It helps.
My son went to bed. Then my daughter had a meltdown. She started crying uncontrollably and wouldn’t talk to me. Mostly both my kids do talk to me. About what’s going on in their lives and how they feel about things. She’s almost 14, and very emotional. But this was a new level. And it came from out of nowhere.
Ultimately she told me she doesn’t want to live anymore. She just wishes she could die.
We talked for about an hour and I got her to sleep at around 11pm. I got the names of her school counsellor, favourite teacher and year advisor. This morning I called the school and explained what was happening and arranged extra support for her. She has an appointment with her regular psychologist on Wednesday. Good timing. She has also self-harmed in the past. I take her seriously as well.
At 1am my son woke with an extreme anxiety attack. I calmed him and got him back to bed around 2am.
3:30am my daughter had a nightmare and bunked down with me for a while. An hour later she went back to bed.
5:30am my son returned, again in terror, sweating and crying and begging me to help him. I got him back to bed by 6am.
That was it for me though. No more attempts at sleep. I got up and made a strong coffee.
I tried to wake him for school at 7am, but he refused. There is no way to make a 15 year old boy get up and get dressed. He remained in the fetal position until the doctor’s appointment I made for him at 11:30am.
I now have a referral to a male psychologist and medication for anxiety. While he agreed to the plan when we were in my GPs office, he now tells me he won’t take the meds and he won’t see the psychologist. And I can’t make him.
He’s right. I can’t.
I can only encourage him. Offer rewards. Punishment doesn’t work either. And even if I could somehow physically force him there, he would just sit there in silence. That’s what he did last time.
I’m at a loss as to what to do next. There’s nothing more I can do. I just watch. And make sure I’m available. And ready to listen.
I’m sure that both kids need more time with their father. My son has said as much. My daughter refuses to see her father. But she also craves his attention. And craves the attention of other father figures she’s chosen for herself. My son is the same. I do everything I can to encourage time with their father, but there is only so much I can do. I have ‘family dinner night’ every week. I create family events…movies, days out. He still calls me daily. Sometimes twice a day. We are still close.
But there is only so much I can do.
Today I called him and told him he needs to step up and be prepared to drop everything if his kids need him. And let them know that he’s there and willing to drop everything for them. I know he loves them, but he isn’t good at showing it. I know he’s doing his best too, but it isn’t enough. He agreed.
I have no doubt that my illness contributes to their anxiety. When I get really sick, when I can’t get off the couch, like right now, they get scared. I can’t help that though. I reassure them as much as possible. Feeling guilty is a waste of energy, and I don’t have any energy to spare. Ditto for feeling sorry for myself.
I have to focus on my health, for all our sakes. I saw my usual doctor this morning for pain meds. Every joint is flaring, including my ribs and jaw.
I see my other GP tomorrow, she’s still running more tests and conferring with the top immunologist at the hospital. I know she’s thinking sarcoidosis, because I overheard their phone conversation. I’m not even going to google. I don’t want to know. She’s organizing lung function testing and has prescribed more meds, to help me breathe easier. More appointments. More tests.
I saw my own immunologist last week. Had skin prick testing for allergies. A few were strongly positive – grass mix, hazelnut and wheat. Dairy was a moderate positive.
She told my it’s very likely I will never be able to eat wheat or dairy again. That’s a huge blow. I’m sick of the elimination diet. Fruit, vegetables, oats, rice and chicken. For over three months now. The sum result is that I just don’t eat much. A few apples, some vegetables…rice.
My scopes were clean. That’s a good thing. I can start reintroducing foods now, so I’m going to start eating other meats. I need protein. And I need options. I have to start eating again. My kids are living on cheese toasties, sausage sandwiches and noodle cups. Not good for them either. And I’m living on coffee.
I had started trying out a bit of dairy and a bit of wheat. Some pasta. Some cheese sprinkled on top. Some bread. Blissfully delicious, but the throat spasms increased, and the ‘I just swallowed a golfball’ feeling got worse. As did the reflux and gagging. I’m great fun to have at dinner parties!
No dairy and no wheat is depressing. Food is one of life’s great pleasures. To live forever on this restrictive diet is extreme.
But the pain of having your esophagus clamp shut is also pretty extreme. And the constant reflux, while not exactly agony, is definitely unpleasant. It’s hard to eat when almost everything you eat causes pain. You get conditioned pretty quickly to prefer hunger pangs to the intense pain of food impaction, which lasts for hours. And after a while you’re just not hungry anymore. I see my dietitian next week, and hopefully this time she will give me a plan for slowly introducing foods. The gold standard is to introduce one food per month. Food. Not food group. And then have a scope to see if its still clear.
That’s just not realistic. I can’t deal with a scope every month. I have major doctor fatigue as it is. And its expensive and unnecessary. I will be introducing one food a month, but unless problems occur, I’ll only have scopes after introducing each dairy product, and wheat product. And those will be the last things I re-introduce. So they are off the table for almost a year. Maybe I can have cheese for Christmas?
I have an MRI on Saturday to check on the infarcts in my brain. See if there is more progression. And the balance and dizziness is getting to be quite tedious. And the memory problems and the numbness and the urinary incontinence. TMI? I know.
My left eye is still blurred, and watering constantly. It’s nothing but an annoyance. I can see clearly out of my right eye. My tear ducts were flushed. But it hasn’t fixed the problem. I don’t know if it’s worth the trouble of another appointment and minor procedure to get it sorted. I think I’ll put up with it. Unless another infection settles in. I’m tired of waiting rooms. As it is I have five medical appointments this week. That’s about five too many. I have been averaging three medical appointments a week for the last month now. I’m tired of it.
I finally heard back from my rheumatologist, she’s fitting me in tomorrow. She hasn’t even started the Xeljanz application. She just forgot about me. I think she’d just happily let me drift away, except I keep calling her. Because I need a rheumy. She is one of the best in town. She just has no idea how to help. What to do next. And the truth is, I’m not that keen to start another biological. None of them have done me any good. Infact they have done me harm. The major side effects I’ve gathered from my biologics include very high blood pressure, high cholesterol, high blood sugar, weight gain, possible MS, drug induced lupus, and two small strokes.
And I gained nothing.
So I’m not keen. Except the pain is bad. It’s very bad. I’m considering injecting methotrexatae tonight. It has only been a few days, and I am already buckling under the pain levels. Most of my joints are inflamed and feel like they are seized up. All my limbs are made of lead.
I used to be tougher. I used to handle pain better. The fatigue is deadweight. And it doesn’t help when my kids are going through their own trauma, and wake me up every hour. I haven’t got the energy to be strong for them. I’m feeling a fair dose of depression myself.
So I’ll lower the ante. Keep things calm. Try to accept that right now all I can do is lie on the couch. I have food for tonight. I have to force myself to eat it, regardless of having no appetite. I have a simple menu planned for the rest of the week. My goal for this week is to get us all eating healthier. Just that one thing. That’s enough.
And I have to get myself back to gym, even if it’s only to ride the recumbent bike for 10 minutes. But that can wait until tomorrow. I’m in no shape today. And I will arrange to have coffee with a friend this week. I have to get out. See people. Live. If not, what is the point?
Lying on the couch is not a life. Even though that all sounds pretty impossible right now, I have to try.