Pyjama Time

Oh yeah, I spoke with my boyfriends coach about Amfexa. He says it could be possible that my body needs to adjust to the new medication, and advice me to take a lower dose for the first two weeks or so, and after that it should be fine. So that's what I'm doing now.

I still feel like I should quit the meds though, if only because I don't want to depend on something that can be taken away from me because people feel the need to tamper with the regulations. So here's the plan:

First, I'll get my body adjusted to Amfexa. Whenever there is a demanding or challenging period coming up, meds might be helpful, so for this purpose, I will be taking Amfexa until I've used it up.

In the meantime, starting 2020, I will quit sugar. While the Amfexa suppresses the sugar cravings, once I run out of Amfexa, I will be living sugar free long enough for the cravings to have disappeared, so continuing a sugar free lifestyle should be a bit easier that way.

To replace the Amfexa, I will use a natural alternative: LTO3. I will write a more in-depth post about this as soon as I start with it.

Tomorrow I've got an appointment with my social worker. I might be doing well now, but I want to see what the possibilities are in case I have a relapse and start feeling suicidal again, or get wiped out by fatigue or something.

So much of what is described in this video, I have experienced today, and yesterday as well.

I felt physically able to get things done, so I made a To Do List and got to work. I bumped into so many setbacks. I was trying to figure out if I could switch to a health insurance which would cover my medication. This was a hellish chore. I tried calling to customer service of one such a health insurance, but they told me they needed some kind of number, for which I had to call my apothecary. Instead, I looked up a site which compares health insurances. You just fill in what you want to get covered and they will list the insurances that are most suitable for you. But when I tried to look up my medication in their system, this turned out to be rather complicated. There are so many versions of dexamfetamine, and I don't know which one of them it is exactly that I have been taking, until Amfexa reared its ugly head. It didn't take long for the desire to die to arise. I decided figuring out my insurance wasn't a priority right now. I called my doctor, who just so happened to have time for me this afternoon.

First, I asked him for a reference to a specific psychiatrist. This one specializes in patients with EPP. You can imagine I'd like to see this person, since I myself am such a patient. But the doctor wouldn't refer me. This psychiatrist is in a different region, so he said he couldn't refer me. If my internist sees any need for me to see that psychiatrist, they could refer me internally, that's what he said.

Then, I told him about my experience with Amfexa. Not only does it not work as well as the generic one, it also impacts my mood. It turns me suicidal. I asked if it was possible to switch me back to the generics, even if my insurance doesn't cover it.

It wasn't. Appearantly it's Amfexa or nothing, unless there is an absolute reason to have to use a different one, like being allergic to one of the helping agents of the brand or something. My doctor says he gets numerous patients daily with the same problem. They're switched on a different type of medication for financial reasons, but it doesn't work as well, so they want to switch back, but they can't do that due to the new rules. He says I've only been taking Amfexa for four days, and I should be taking it at least two weeks to know for sure what its effects are. Until I do, nothing can be done. They simply won't take it seriously.

Bottom line, Amfexa is being shoved down my throat. And this one last fruitless attempt to get anything done in my search for health and wellbeing, made me feel so hopeless that once again, I wanted to die. It seriously took all my willpower not to put a knife to my wrist. I feel so abandoned by the healthcare system! Without my medication, I cannot function. I can't do my administrative tasks, I barely got 10% of one such a task done today, and I wanted to have at least started cleaning the house a bit, but I couldn't bring myself to do it.

I felt so horrible today. Nothing could bring me joy. I played Zelda for a bit, simply because otherwise I didn't know what to do with myself, but even that took so much of my concentration that it didn't last. So I just took my phone to bed and stared at YouTube for the rest of the evening.

Then just a minute ago, I went to the bathroom and the toilet paper turned red. Appearantly I'm on my period, and it's very much possible that I'm PMSing.

So, maybe it's not the Amfexa after all, maybe it's my hormones. Whatever the case, I'm in trouble. Every time I have to do something I don't feel like doing, I want to die. Unfortunately a big part of life consists of things I don't want to do, like cooking and cleaning for myself.

I need help. So I texted my social worker and made an appointment to see what can be done for me.

Just realized I still owe you guys an after picture. Sorry for the wait, I had some recovering to do.

So yeah, my hair is shorter, lighter and slightly pinker. The camera doesn't do it justice. I was going for rose brown. It didn't turn out as spectacular as all those pictures you see of rose gold or rose brown hair everywhere, but I'm quite happy with the result!

These past few days have been a rollercoaster. I've been sleeping well, woke up with a headache again this weekend, and I was out of painkillers.... Yesterday was a good day, but I wasted my energy on all kinds of things I didn't really want to do, and didn't get to do what I planned to do if I had the energy. Sometimes the distractions win, and I lose an entire day. I also tooky recommended dose of Amfexa yesterday. 7.5 mg Amfexa seems to have the same effect as 5 mg generic dexamfetamine. I'm a bit more present, but still can't focus as well as I would like.

Today, I tried mixing them together. 5mg Amfexa and 2.5mg generic. My attention was all over the place and I was constantly bombarded with impulses and creative ideas. I also had ZERO patience. My home is a big mess, and feeling well enough I decided to go out and buy some things for organizing my stuff. I only needed a couple of things, but it took me so long to get it! The store had so much handy stuff to offer and I kept going back and forth, putting stuff in my cart, then putting it back, then take it out again, then see something else that might be handy and having to make choices... I saw potential in everything, but my budget is limited and so is my space. So yeah, shopping turned out to be quite the endeavor!

Once home I thought I'd crochet a bit, but my yarn was all tangled up and this frustrated me so much it made me suicidal. No really, everything felt so hopeless that it took all my willpower not to kill myself. I had a meeting this evening, I almost decided not to go because I wanted to give up on life. But I figured a bit of social interaction might just be what I need, and I'm glad I did go. I got to feel enthusiastic about something again, and it all seems worth it again.

So uhm, Amfexa appears to be crap. I never want to feel this again. I'm calling my doctor tomorrow. There's a specific psychiatrist I want to be referred to, one who specializes in EPP patients. I wonder if this one can tell me anything new...

I made two of them! Since it's called the Angel Wisp Shawl, I had to make one with angelwings attached ^_^ I think it turned out really cute!

Also trying out Amfexa today. To be honest, I don't think it's really working... I'm functioning as well as I would on a good day without meds. That means I'm getting things done, but once I finish a task, it takes a while to switch over to the next. I'm also easily distracted, and constantly bombarded by my own impulses, and as a consequence, constantly have to consider if it would be wise to act on them. Yeah, that's just me without meds on a good day.

I googled some reviews. They scare the shit out of me. There were two good ones. One simply said she was content with the effect of Amfexa, the other said she previously used a generic, and Amfexa seems to be an improvement. But there's a massive amount of bad reviews. At best, people report not noticing any effect and they feel ripped off. At worst, people report having depressions, (yes, multiple), aggressive moods and lashing out to loved ones, heart palpitations, high blood pressure, suicidal thoughts, trouble sleeping, anxiety... The list goes on. Many want to go back to the generic, but their apothecary won't let them. There's also people saying they were doing great the first month, but after that month everything went downhill.

So.

I didn't take my recommended dose today though. That might be why I hardly see any effect. Sometimes I take less because I feel like I don't need as much, and today this was also the case. But I'm also a bit reluctant to mix a generic with Amfexa, which is what they instructed me to do. I actually have to take 7.5 mg. Amfexa comes in pills of 5,which can be broken into four pieces. The generics come in pills of 2.5. So they think it would do to just take an Amfexa with a generic, and get my dose that way.

Now I think they might be wrong about that. While it is said that it's all the same stuff, the helping agents of these pills can be of massive influence. So that's why I don't want to mix. But I want to give it all a proper go. Today I'm just taking one Amfexa twice (just had my second one). Tomorrow, maybe the day after, I'm taking Amfexa and break one, so I don't have to mix, see if my recommended dose has more effect. Next, I'll mix the pills, just to see if that will be different as well. And I'll have to check how I feel after a month.

So when I'm done with this batch, I'll make a decision. Either I conclude the meds work for me and I'll keep taking them, or they don't and I'll stop taking them.

There is a natural alternative I might try if I decide to stop. It's not an actual drug, but a supplement. It's called LTO3, and it's based on fish oil and calming herbs. But I'll write more about that if it gets to that.

So today was another good day. I woke up with a splitting headache, but after I took some painkillers it went away quite quickly. I crocheted myself a shawl, tomorrow I'll weave in the ends while I wait for the dye to process, and then it's ready to be blocked. I'm so proud of it! I saw a picture of it on Google. The pattern is sold on ravelry, but I couldn't be bothered to buy it. Instead, I studied the picture very carefully and figured it out myself. Once it's blocked, I'll post a picture of it. For now, I'll post a link to the pattern; https://www.ravelry.com/patterns/library/angel-wisp-shawl

Isn't it lovely? It was love at first sight to me! And I think it's so cool that I'm able to just look at a picture and copy it! I do feel like buying the pattern anyway, just to support the creator of the pattern.

There's another one that caught my eye;

https://www.ravelry.com/patterns/library/thistle-field

Though I'm considering to make it rectangular instead of triangular, and REALLY long. I think it would look so cool to have a long, lacy shawl hanging around my torso, with a classy dress underneath... So that might be my next project!

I forgot to mention, the probiotics that I ordered had finally arrived yesterday, so I've started taking them. Didn't expect it to start making much of a difference immediately, and it doesn't seem likely that the probiotics are causing the good days, but I'm mentioning it anyway. Just in case it did.

Now, since they're switching to Amfexa, which only makes pills of 5 mg of dexamfetamine, that changes the way I need to take them. So that's why they called me, to give me the instructions.

I'm pissed. Not only do I now have to pay for my pills out of my own pocket, they're basically toying with my well being. Because, while they have you believe that it's all the same stuff, it's really not. Yes, it's all dexamfetamine, but the helping agents, you know, the stuff that turns it into a pill and all, can be a major influence on the way your body reacts to the medication.

Like with food. Say your buying bread. One brand uses the very basic recipe, the other adds a bit of sugar to make it taste nice. Now usually, you buy the brand that has no sugar in it, but the store currently doesn't sell that brand (they're sold out or something) so you buy the other brand. You make yourself a sandwich, and two hours later, you want another one. And another hour later, you start craving pie, and cookies, and chocolate. Because your body is reacting to the sugar in the bread you bought. You go to the store and you tell them what you're struggling with, and they tell you that it really doesn't matter that much. Bread is bread, so don't worry about it. Yes, the cravings are difficult, but just practice some discipline and you'll be fine.

It's the same with pills. I haven't tried Amfexa just yet, so I can't say anything about how it works for me, but I've read stories from people telling how they switched from a generic brand to Amfexa, and it had a negative effect on their mood. They became more aggressive and lashed out to their loved ones. So I'm a bit scared now. I wonder how I'll react to Amfexa myself.

On the other hand, Amfexa might turn out to be a better choice for me. Perhaps I'll find that it's worth my money and decide to keep taking this, even if my insurance goes back to covering the generics. Who knows...

I have to admit I also kinda felt something like this coming. Since dexamfetamine is a stimulant, it affects my sleep. I've been carful with it for that reason, because I've come to find that I have trouble falling asleep for 12 to 16 hours after my last dose. It wasn't always like that though, there have been nights when I slept even better on the stuff than without it. So I've been mindful about when I take my meds, but even then, I keep having trouble sleeping. So I've been considering to get off of it altogether. Give my body a rest, a chance to balance itself out, maybe eat a healthier diet and live a healthier lifestyle instead.

When you're sailing on a ship that no longer serves you, and you need to get off but you're reluctant to swim, the universe will often help out by poking holes in your ship, so your ship will sink and you've got no other choice but to start swimming. So maybe the universe is giving me that extra push I need to get off the meds. Or, maybe it's giving me a better alternative. Maybe I'll find that Amfexa is worth my money, and maybe it'll aid in my recovery, enabling me to start working for money so I can generate a bigger income, so I'll be able to afford it. Who knows?

I remembered my aunt telling me something about microbiome. She recommends I start taking Acidophilus. I did some research. It was mentioned that hormonal birth control also damages your much needed healthy gut bacteria. Since I've had an IUD for 3 years, and was on other forms of hormonal birth control since I was 17, I'm guessing I could indeed use a refill, so I ordered some probiotics. And while I was on their website, also spoiled myself with some natural shampoo, conditioner, body wash and body lotion. Yay! I bought a natural deodorant from them a while back, really liked it, thought I might try some other stuff as well. Can't wait for my order to arrive!

So yeah, we'll see what the probiotics will do...

I'm getting hungry. I hope my hazelnutmilk hasn't expired yet, then I can make myself some chiapudding. They say chiaseeds are a superfood. That's cool and all, but they already had me at pudding. With chiaseeds, you can make pudding with zero effort, which is great for a girl with zero energy!

It's now nearly 8 pm. I just took my pills, I'll call my boyfriend to let him know I'm coming and to discuss dinner plans, and then I'll be off to my friends birthday. Good thing the party lasts all weekend!

I've never been a morning person. I always hoped it would somehow get better. It never occurred to me that it could also get worse. Way worse.

I'm 31 years old. I'm on welfare, since I can't work due to health issues. I've got an amazing boyfriend, whom I believe is my twin flame. I'd say I have an amazing life too, if only I had the energy to actually live it.

I've got Erythropoietic Protoporphyria, in short E.P.P. Also known as Vampires Disease. If you want to know more about it, Google it. I've currently got other things to write about. All you really need to know is that this disease might be the cause, or one of the causes of the fluctuations in my energy levels.

I say one of the causes, because there is more. I've also been diagnosed with ADD, which is also draining me mentally all the time. On the plus side, with this diagnosis I'm able to get myself some amfetamines prescribed. Usually the medication enables me to do what I want or need to do. With those pills I at least get to do some living, even if it's not as much as I'd like to.

I also recently got my Mirena IUD removed. I somehow stumbled upon something on the Internet educating me about the symptoms of hormonal imbalances and how the IUD can be the cause of it, so adding 1 to 1 I concluded that thing needed to exit my body as soon as possible. Of course it will take some time for my hormones to balance out, but I sure hope I will notice some improvement over time.

I currently cycle from a state to total and utter lethargy, and insomnia preventing me from adequately recharging my energy, to hypersomnia, sleeping through days and events I'd rather have been present at, to either waking up with the energy to do something enjoyable, or something that simply must be done as a part of day to day life, or I wake up feeling miserable as heck, unable to get out of bed, distracting myself from the discontent until I'm able to fall asleep. Maybe next time I wake up I'll feel recharged again.

I cope by being kind to myself and mustering all the patience I can for my body. I don't force myself to do anything when I don't feel able to, and I try to make as much use of my energy as I can when it's available. So sometimes I'll be paying my bills at 3 am, because at that moment I feel able to, and it must be done anyway, and I never know when I'm going to be able to again.