A question I keep getting asked is wtf went wrong?
Here’s the answer. It’s long so get coffee or cake or something. I can’t remember exactly what order this stuff happened in because my brain is in the shed right now, and so much stuff happened in such a short space of time that it’s all jumbled in my head.
Okay so some stuff happened first that upset my daughter a lot. But I can’t really talk about that because of her privacy, and as you know if you’ve followed this blog I don’t post anything without my daughters consent. Lets just say, this thing happened, it made her sad and she went through another thing in school which made her sad. The rest she is okay with me posting so…
My daughter and I got sick with some kind of weird viral infection. It was a really nasty one and caused my daughter and I to have swellings on our neck and face that came and went for about two months. Mine spread to my chest and I had a wicked chest infection. I was worried mostly about my daughter at this stage because the swelling of the gland behind her ear was huge. This was in the summer holidays so I kind of mentioned it before, but to get the magnitude of everything that went wrong I wanted to put it all on this post.
My chest infection got horribly worse, so I ended up having a chest x-ray which came back with a shadow and a prominent hilar, which I now know was part of this awful viral infection. At the time though, I was convinced I had something horrible. I’ve watched too much Breaking Bad and read too much “The Fault in our Stars”. Also, I had lost weight without doing anything and that never happens to me ever. I hadn’t stopped gaining weight from recovery, I was only gaining 1-2kg a year, but my weight doesn’t maintain itself yet even if I eat the same calories everyday (I didn’t count but even though I was recovered I would tend to eat nearly the same things everyday, I don’t know. Weird I guess). I take medication that causes weight gain so I’m thinking that’s why. Anyway, yes, I had lost some weight but not enough to cause any concern at this point, it just worried me because weight loss + shadow + prominent hilar + swollen glands in neck all signs of lung cancer.
I had to wait ages to get a repeat X-ray and also my blood tests showed that something was wrong, something with my neutrophils or something that lasted 3 months. It was probably to do with this viral infection, my body does not fight them off well at all. Viral infections have knocked me on my ass for months at a time more than once. Meanwhile my daughter returns to health physically but becomes mentally unwell. You have to understand that I was a complete and utter mess waiting for this X-ray thing. I couldn’t do anything. I was making bracelets and stuff, and couldn’t concentrate on them anymore, I used what tiny energy I did have on trying to make my daughter happy. To no avail, although I did help her a lot. She started not wanting to go to school anymore, she would be crying most nights, she still is. She talked to me about her feelings, and she told me enough for me to be, “Okay hang on. This isn’t normal. This cannot be explained by anything else, she needs professional help”.
Note * Although I do have health anxiety and OCD I do not feel that way about my daughter, I’m convinced even right now that she is going to be fine, and not like me. So if I say she needs help, she needs help. It is serious.
My repeat Xray comes back absolutely fine, no prominent hilar anymore and the shadow is gone but my blood tests are still bad but like I said, that lasted around 3 months.
So while going through all this stress I quit smoking immediately. I don’t ever want to go through that crap ever again. I vape now. Vaping is so awesome, haha, but anyway. Quitting smoking causes issues of their own, I feel like absolute crap mentally, I always do when I quit smoking, last time I quit I ended up in crisis and this time wasn’t much different.
I get a cluster headache, and it’s the first one I’ve ever had and it was the most painful thing I have ever been through in my entire life. I’ve given birth, I’ve had kidney stones and kidney colic, no, nothing compares to the pain of a cluster headache. My eye is bulging out of my head, and streaming, and also gets infected and I last two whole days of pacing back and forth and rocking when I have an attack and end up going to A&E. I was thinking it was a brain bleed or something, I’ve had migraines before but this was something else entirely. Cluster headache attacks were waking me up in the middle of the night out of my med induced mini coma, NOTHING usually wakes me up out of that. I couldn’t do anything, couldn’t eat, couldn’t sleep, nothing. I have a bunch of tests at the hospital because they wanted to rule out a brain bleed themselves especially because my eye and whole eye socket was affected. They end up giving me a lumbar puncture just to make sure.
I get the worst lumbar puncture headache which means I cannot sit or stand at all. I have to lay completely flat and it makes me cry just going to the bathroom because it’s so painful. I ended up going back to the hospital because I have infection symptoms, but it turned out to be not related to the lumbar puncture thankfully and the doctor says, “Wow, you’re really unlucky, first to get cluster headaches which are really rare in women and then to get a spinal headache so severe, most people don’t get those anymore” I know right?! My luck is shit. She was right though, I’ve had a lumbar puncture before and only had a headache for a day I think. They send me home with super awesome painkillers that make me “funny and drunk” which is what my daughter said. I came home and laughed for about five minutes because I had mail in my mailbox downstairs. Good job I didn’t open my email I have over 3,000 unread mail in there. Haha. I also had to put my “mag boots” on whenever I left the room because I was scared I was going to float off into space or something, oh and I cut cake weird. My daughter is really particular about the way you cut cake, it has to be proper triangles but I sliced the cake like it was bread, found it absolutely hilarious and she laughs and says, “What kind of monster cuts cake like that?!”. It was funny and I was able to stand up for the first time in days while they were working.
My daughter ends up looking after me for the ten whole days that I cannot sit or stand at all without almost passing out from the pain. I barely eat anything because I have acid reflux and eating while lying down (I couldn’t even sit up to eat) is absolutely hurting my stomach so bad.
My daughter gets worse mentally, she was really worried about me and I felt bad because there was nothing I could do about it, I couldn’t even continue taking the super awesome painkillers because they interfered with my psychiatric medication too much (google tells me there is a major interaction between these painkillers and my meds) and I feel bad making her even go to school. She finally gets an assessment at CAMHS (child and adolescent mental health service), and I wonder how the heck I am going to get there with my headache, but we do get there somehow. My mum takes us. I am in agony, and my stomach is killing me from lying down all the time but we get through it. My daughter was just totally awesome throughout the appointment and was very brave and very good at describing the way she feels. They say that she does need help and refer her for more sessions and stuff which is on Wednesday.
They remark on our bond, and that makes me feel all squishy and stuff. We do have a great bond and it’s something I’m very lucky to have.
It was surreal, taking my daughter to a place that I have been. Seeing mental health nurses and OT’s for my daughter and not me. It felt completely wrong, that she shouldn’t be there, and she shouldn’t be going through this. I’m glad she is getting help but I just felt bad that I couldn’t protect her from this stuff. I felt like it was my fault because all of this, above, she’s been through it too, even though it’s not like I on purpose had a cluster headache so she had to look after me, or I on purpose got sick. I see some things in her that are so similar to me, but I have hope for her because she is different to me in awesome ways. I just remember what it was like when I first started going through this, and in one way it’s quite, um, healing? getting her the help that I definitely needed, and in another way reminds me of how alone I felt in school. Something which she told me she feels. Feeling so different to everyone else. It’s also worrying because even if I am hopeful and I am, there’s that thing in the back of my head that’s like, “What if she gets to my age and is still feeling this way, because I do, it got worse over the years and not better”.
I haven’t made any bracelets for ages, but I have been bullet journalling, I started getting into it because when I was lying flat on my abdomen I could still draw with my head flat. I couldn’t make bracelets because I need to be sat up to get the tension right on the knots. So that’s basically all I did.
I’m in crisis myself now, and trying to flipping get through each day and help my daughter who is also still in crisis.
I also need to gain weight, and that’s hard. Harder than I cared to admit to anyone.
There’s this quote on “Dexter” and it fit me perfectly, he said something like, “All I wanted for years was to feel normal things, and now that I do, I just want it to stop” and that is where I am at with that.
I realise how hypocritical this is and how illogical. I need to be there for my daughter and I want to. I just feel like to do that I need to not feel so bad myself I guess.
My nurse was going to contact the crisis team or something and I’m supposed to start new medications but I’m so depressed it feels right now that I’m never going to get better. Everyone told me how great my life would be after I recovered and it just wasn’t. I’m still struggling everyday, and it hurts because I was my daughters age when things started going horribly wrong for me too, and to think of her going through this until she’s my age (although honestly I am more hopeful for her) well, I don’t want to feel that, and it made me realise just how long I’ve been going through this, and so far, nothing has really got any better. The last time I had a good mental health wise week? One and a half years ago. For real.
Here’s a picture of my bullet journal to cheer things up a bit.
Categories: mental health