Yesterday I got a small box in the mail from an unknown sender.
And it didn’t say to wait for my birthday but I figured that’s what it was for so I opened it at midnight.
Turns out my sister who lives in Australia and thus couldn’t be here sent had a heart shaped pendant made with a picture of the two of us engraved in it.
Honestly, I started crying the moment I read the card.
It’s just the sweetest thing ever.
I was feeling horrible yesterday because I knew she wouldn’t be here but then this came in and we talked for a bit so now I feel much better.
Then this morning I got 2 cards in the mail from my brother and his family and my sister and her family.
I then got all dolled up in a new dress that makes me feel like a bombshell and went to the store with my parents to get some cake and other snacks for my “party” and ran into by best guy friend who was kinda taken aback by my level of dressed-up-ness which made me feel damn good tbh.
I also got a message from the government guy that helps me get my life in order, congratulating me on my birthday and on reaching 0mg of sertraline last
I went to my parents place which they decorated according to my sisters plan with all kinds of dinosaurs because apparently you’re not really 24 unless there’s dinosaurs hanging everywhere.
Now it’s a matter of having a piece of cake and waiting till people to arrive for dinner later.
Sure, the next 6 weeks are gonna be hard because it’s not gonna be out of my system until then. And after that it’s gonna be 5 more months of nothing before we can decide wether or not I need different meds.
In my last post I wrote that I had to decide whether or not to continue lowering my meds.
I decided I should, cause I need to know how life is without them.
Today I’m down to 14mg out of the 150mg I took up until January.
Today I also got the official report from my psychiatrist which states I have an autism spectrum disorder and depression, next to the social phobia and generalized fear disorder I was already diagnosed with years ago.
Nothing I wasn’t expecting to find, but it’s still nice to know another little part about myself.
In other news, eating has been horrible lately.
I have a cow-milk allergy and I’m gluten intolerant. On top of this I have great difficulty finding food I like because of problems with texture, taste and smell.
Because of this I can only eat the few vegetables I can stand using particular ways of preparation. I typically eat spinach or cauliflower, with potatoes and then I mash them together with sauce and gravy and a meatball.
If I don’t eat vegetables I usually eat fries or other potato products.
Skip ahead a couple weeks and now I can hardly stomach anything containing potatoes. Because it all tasted sour.
And no matter what I eat I get a horrible stomach ache.
So I’ve been quiet for quite a while. That’s because I’ve not been feeling all that good lately. Anyway figured it was time for an update so here ya go!
In January we decided it was time to get rid of my meds because the side effects were outweighing the good stuff.
So we got tapering strips from a special pharmacy.
I took 150 mg of sertraline for almost 8 years.
The strips are basically sachets with a set dose for 28 days. So the first 28 days I went from 150mg to 100mg, then 28 days for 100mg to 50mg.
Then I took 50mg for about 3 months because it was causing me a lot of pain and we wanted to consult a psychiatrist before going further.
The psychiatrist wanted to figure out if there was anything former doctors missed so we started talking and both came with the idea that maybe I had some autistic traits.
We then went into a diagnostic process for autism that took quite a few appointments and a talk with my parents about my childhood.
Eventually he came to the conclusion that I’m on the spectrum. He said they don’t use the term anymore more but if they did it would’ve been a sort of Aspergers.
I don’t know what to do with this information but I guess it’s nice to know another part of me.
Anyway when we were done we decided it was time to continue so I started the 28 day strip for 50mg to 25mg. Which is where I arrived today!
Im on 1/6th of my original dose. And honestly things are not going great.
Right now it’s a choice between plateauing on 25mg for a while to even out, or continuing the strips and getting it out of my system as quickly as possible. I don’t know what I’m gonna do yet but I have to decide today.
Either way, it need to take 2 more 28 day strips until I’m all clear. After that it’ll take a while to be out of my system entirely.
I went to the psychiatrist for the second time last Tuesday. Last week I hated him. It just didn’t feel right. Then this week when my parents dropped me off I couldn’t make myself go in so my mom went with me to the waiting room.
The appointment went really well though so I feel like next week is gonna go fine on my own.
We went over a list of 50 questions pertaining to autism because myself and others have brought it up over the years. And he also thought it was highly likely that I have autism.
So it basically works like this.
There’s 50 “points” you can get, and if you have 23 or more he usually decides to go on into a long diagnostics program. I got 32, so the next 2 or more appointments are gonna be diagnosing and then another one with my parents to talk about the early years.
Im just happy that I finally have someone who actually knows his stuff. Not to say I don’t love the psychologists I’ve had over the years because they’ve all been great. I just haven’t had a psychiatrist since I was 16.
My mom still doesn’t get how that psychiatrist insisted I wasn’t autistic even though my mom has thought it since like forever.
So, last Monday I said I was gonna stop posting daily but try to skip 1 day at most between posts.
Tuesday I got some crap news that kinda threw me into a pit of despair for a bit.
The reevaluation of my request for financial aid came back negative.
There’s several kinds of aid programs or whatever they’re called.
This is the only that applies to me because I can’t handle job interviews let alone work.
Basically there are 4 guidelines.
All of these need to receive a no in order to get it.
1. Can you work 1 hour on end.
2. Can you work 4 hours a day 5 times a week.
3. Can you complete a single task.
4. Do you have basic work capabilities. (Make a coo of coffee or something simple like that)
If all of these are answered no, you’re still not done. There’s one more question that’s probably more important than anything.
5. Will this stay the same for the rest of your working life?
If this is answered no, you won’t get anything from this particular aid program.
Now, until a few years ago the fifth question didn’t exist.
If the first 4 applied to you, you’d get aid for a few years and then get reevaluated.
In which case I would’ve been a perfect candidate according to one of the people reviewing my case. (Yay, thanx that makes me feel great!😑)
The answers to the questions in my case are as follows.
1. No, I can hardly do the dishes or write a letter without having to take multiple breaks because of the horrible pain I’m in.
2. Absolutely not, if I were to work for 4 hours spread out over a day, I would have no energy whatsoever to do it again the next day. Not to mention the fact that my house would be an enormous mess because I can hardly keep it clean without being exhausted and in pain from work.
3. Yes, sure I can make a cup of coffee. But only if the circumstances are ideal. I could make my dad a cup of coffee on a good day but but anyone outside my close circle would get half of it in the cup and half on the saucer because I would be shaking both from pain and fear. Plus I can’t hold things for long without my hands wanting to drop it so that’s not great either.
If I happened to see a dead bird or a life one too close on my way to work I would be unable to do anything until my panic attack resides and then I’d be exhausted so I still wouldn’t be able to do anything.
4. Same answer as before basically. I’m hella smart and have an above average IQ but it doesn’t matter one bit if my body and mental state doesn’t agree with the situation.
5. I think so but I don’t own a crystal ball. My therapists want to stay positive and say I’ll get better. But I can’t even remember the last day I wasn’t in pain.
And yet they believe I can work 4 hours a day now, and expand to 4 hours a day 5 days a week. I can apparently also work more than an hour in one go and can handle many tasks.
In other words they think I’m lying, even though my freaking therapist and counselor where at the meeting corroborating my story. Or telling it really cause all I could do was look outside at where my dad was parked in hopes of not going into full panic mode.
We’re getting a lawyer to look it all over to see what our chances are in court. But honestly I’m just freaking tired, and I kinda just want to give up and move back in with my parents.
Anyway super long post so here’s Darkness as a baby.
I said I would post an update every of March but I’m gonna keep it going. Just not as strict. If I’m tired or didn’t do anything out of the ordinary I might skip a day, although I’m gonna try to never skip more then 1 day because I don’t want to forget all about it.
Anyway, I started the day with my new morning ritual. It goes like this: I take my meds and use the toilet then I take an hour long infrared nap followed by a long hot shower.
We’ve decided to try this out for a while to see if it does me any good. So far it’s at least helped me get tired earlier in the evening. Which is probably because I have to get up 1,5 hours before leaving the house instead of 20 minutes.
I haven’t really seen a decrease in pain but it’s only been 3 days so we won’t know if it’s useful for a while.
I made some bacon fried rice per the recommendation from my sister. I absolutely loved it!
I then went to a nearby forest with my other sister and her 2 girls.
We sat down in a giant clearing and played with a ball and a frisbee and some weird throw-y things. My sister and I played the most. As the little one kept taking of her boots so she had to stay on the plaid and the big one was so scared someone would steal her toys that she held onto them for dear life most of the time we were there. Because a toddler walking by picked up the ball because she didn’t know it wasn’t hers.
When I got home I played the division 2 and heated up some leftovers.
At around 8 my dad picked me up to go to Ikea and a hardware store. He didn’t want to go alone and I love sitting in cars so gladly went with him.
I then watched a couple youtube videos and filled in some stuff in my bullet journal and now I’m gonna go sleep.
Summer time started today so everything is an hour earlier from today on.
Slept until late because of it.
Then finished the last of my pancake batter and bacon.
Let Darkness outside and lost her for a bit.
Got dressed to go look for her and decided to take her on a walk accross the street.
She was very hesitant and when we met a dog she couldn’t wait to get home.
She spent most of the day outside and she loved it!
At some point I lost her again until my sister sent me some pictures of Darkness walking on our joined garden wall and I went over there to get her because she couldn’t get out of her garden cause she sucks at jumping.
At night I made nasi goreng with a different spice packet then I’m used to because the one I always used has gluten. It was okay but it didn’t taste like nasi.
My parents came over to have some nasi and then they helped me with the dishes. And tidying the kitchen a bit.
I played some division 2 after they left. And realized it was way later than I thought so I quit. Made a quick bullet journal spread to track the plan I made with my councilor person last Friday.
Had a quick chat with my sister on the other side of the world about pottermore, our Patronus’ and our wands.
And now I’m of to bed.
For those interested in knowing:
I’m a Slytherin and a Pukwudgie.
My patronus is a West Highland Terrier.
My wand is a 14,5 inch hard sycamore wood wand with a unicorn hair core.
Today my dad woke me at 8 to go take an infrared nap. At 8:45 I decided I’d had enough so i got dressed and baked a couple bacon pancakes.
Around 10 we left to go to an art gallery 90 minutes away. They got a gift cheque from something to do with the renovations they did on their house recently. So they could pick out a painting in that price range and they decided they needed my help.
I love road trips so I was totally into it. Until we got there. None of us saw anything we really loved or even liked really. I got a 30x50cm red black and white painting of 3 trees next to water. It was by faaaaaar the best thing in the price range we could pick from. And since my parents aren’t necessarily art people, they didn’t want to pay extra for something they did like enough. So I got a painting I don’t hate.
On the way back we drove past a cat cafe and decided to go in. Because I really wanted too. It was a tiny cafe/gift-shop with 5 sphinx cats.
I had never met a sphinx cat irl so I absolutely loved it. They were all named after typical dutch cafe snacks. Because even though it was more of a high tea place technically it’s still a cat cafe. It was awesome and I bought a beautiful card to send to my sister in Australia.
My parents went to some second hand stores on the way home while I stayed in the car because I cannot stand those places. I’m a bot of a ?germaphobe? in that aspect.
We also went to a “snackbar” on the way home that served gluten free fried snacks.
It was kind of disappointing how little the person that took our order knew but still it’s better then nothing I guess.
When we got home my dad and I got some groceries and I ran into my best guy friend and made plans for later in the evening.
I then made some pancakes and played the division 2 until he arrived while Darkness was outside.
We watched fantastic beasts and where to find them. He went home and I watched some YouTube.
Now I’m sitting in bed writing this and I feel like I’m gonna fall over and barf from dizziness, So I’m gonna lay down and try to sleep now.
Today I woke around 11. I went downstairs to let Darkness out and ate an apple. I then took her upstairs with me and washed my hair. At 13:20 my appointment arrived. He had some great ideas this week!
Afterwards I customized a bullet journal/notebook for my father. Because today is his birthday and when he saw what I did to my own earlier this week he told me all he wanted for his birthday was for me to make him one.
So I did. I had my brother print a picture of my parents and my sister Rose to fit the front. I picked it because she’s studying in Australia at the moment and they miss her a lot.
I then went to my parents place. They also got my brothers kids from school so it was hectic from the start. About an hour later my sister and her family and my two brothers and their extensions arrived.
My brother brought the picture and I finished the book. I also wrote him a thank you for everything and congratulations note and glued it in the front.
I then played outside with the kids until the food arrived.
I gave dad the book and we both got teary.
We had a nice meal. Then more playing outside ensued.
We had some sodas when it was too dark to play outside. And then everyone went home.
When I got home I realized I had to buy cat food so that’s what I did. On the way back I wondered what the cashier must have thought.
I mean, I was buying 2 big bags of cat food and a bag of cat treats while wearing a skirt with cats on it and a shirt with a cat on it.😺
I then petted a strangers cat and gave it a couple treats, fed Darkness and played the division 2 for a bit.