Several months later…
As you’ve noticed, I haven’t posted much new content for a long time. I have made a few posts, but they’ve been minor updates.
What happened was that I simply couldn’t go on being active in YCE and keep blogging – the depression got the better of me. I was waiting for something that has yet to come – actual treatment for my depression.
Yes… I am still fighting hard to get help. I had a contact at the psychiatric unit at the hospital, a nurse, which I’ve mentioned before. Then, after the summer, she changed teams (they work in teams that specialise in different things, bipolar, depression etc) and I was to get a new “team”, a nurse and a psychiatrist. That was a couple of months ago. Not much has happened on that front.
I’ve had suicidal thoughts for almost two years now, and before that I wasn’t really doing great psychologically either. I have three antidepressants, two sleeping pills, two medications against anxiety. And zero support from anyone at the psychiatric unit. Seven medications, no psychologist, no psychiatrist, no nurse, no nothing. So yeah, basically things have been moving backwards. Everything is backwards, in fact. I’m overmedicated and undertreated.
Two weeks ago, it got so bad that I wasn’t sure what I’d do if I didn’t get help. I was ready to collapse.
Alternate solutions and delaying time
It might seem astonishing that this much time has passed, and that things aren’t moving. I have tried to find alternatives to the psychiatric unit.
Still, at the end of the day, I have, a diagnosis almost identical to PTSD. That’s not something that just goes away. My only alternative would be to seek help privately. Pay for it myself. Which I can’t, won’t and shouldn’t have to. There are many other things I could do to improve my quality of life. Which I have done.
I’ve tried everything in my power to keep myself busy and improve my mental wellbeing, mainly by hobbies and finding ways and reasons to get out the door.
I started with photography, as regular readers know. I purchased a Rawbike this summer, which I’ve mentioned very briefly a while ago. It’s a hybrid between an electric bike and a moped. It can function fully as a moped, it’s classified as a class 2 moped (EU classification) limited to 25km/h and it has a throttle. It can also function fully as an electric bike. And everything in between. It did wonders for me; finally, I got outside the door again. I went from almost never leaving the apartment to getting out pretty much every day. I did get a bit tired of just riding around though. So…
… During my absence, I got into RC (Radio controlled… Stuff.). Mainly RC-cars, but I have a few drones as well. This started to dominate my life and days for a long time, several months of the past few. I picked up a few too many models though. My room is a bit cramped frankly.
I also play video games, and perhaps most importantly, I’ve started to attend a youth group for those with mental health issues (ages 18-35 I believe). It’s great to meet others who suffers from mental health issues as this isn’t an issue the survivors I’ve met have had, at least not to this extent. In a way, I fit in better with them. They know nothing of cancer though. Like, nothing. Which is logical and OK, considering no one informs the public all that much (at all) about the issues we face. Essentially, I don’t fit in entirely with either the survivors or my fellow nutcases. (Only we are allowed to use that word!)
My nephew, Neo (He’s not a, hobby but still. Actually, in many ways, he’s kind of like a dog.)
(If you don’t feel like reading about my nephew, you can skip to the next section.) Though not a hobby, my beloved nephew Neo visits us ~three times a week and it’s lovely. He turned one years old in July, meaning he’s 15 months old now. Little dude’s crazy though, he started to walk when he was like eight months? I can’t remember, I know I’ve written about this before, I’ll try and find it. Maybe. Anyway, I’ve shared my RC-hobby with him, and unsurprisingly, he loves it.
He’s doing so many cute, illogical and crazy things. He has a very unique personality. For this reason, I’ve bought a GoPro Hero (2018 model, which can be turned in to a GoPro Hero Black, as they’re one and the same) to record when we play. I want to capture this because it’s great fun to have these natural, spontaneous moments that are simply priceless and impossible to get holding a camera all the time. Getting a mobile to take a picture was simply impossible. It was a disruption. Also, suddenly he wanted to play with the phone instead. That happens with the camera now as well though. He wants to look and touch on everything, especially things with buttons and screens. He tries to go through every drawer in my room (and the apartment), every box. To say he’s a curious baby would be an understatement.
I’ll get a video together soon with Neo, I hope. But yeah, having him around is a treat.
As he’s been involved with the RCs from the start, he now knows what it means that the battery is dead for instance. He can turn some of the RCs on/off himself as well. He even (almost) manages to close the battery compartment with a screwdriver. Almost. He can get the screwdriver to connect with the screw, but when he rotates it, he doesn’t lift the screwdriver, he just rotates it back and forth like 45°, which means he’s going +- 0.
He loves buttons and screens and always tries new things. For instance, today he tried to insert a USB Bluetooth adapter into my Xbox One controller’s micro USB-port. Not going to happen obviously. Still, he does things like that. It’s obviously too big to fit, but he’s spent an hour trying the same thing with other items. He takes something from my PC cars and tries to put it on the RC. Or something equally illogical. Yesterday he took the battery from his RC and I think he tried to put it in his bellybutton. I’m pretty sure, but not 100 %.
Not a permanent solution
As much as I love my nephew; as much as I liked my hobbies, all this have done is to delay whilst I was waiting for help. It didn’t fix anything, it still hasn’t fixed anything; I was still depressed when I got into RC, just not when I was doing exactly what I wanted, which was RC. As soon as anything else popped up, including photography, which I loved, I felt excruciatingly depressed. Obviously, this is not normal and indicative of a depression that is still on-going. Oh, and I haven’t read the news for well over six months now and I steer clear of Facebook, to avoid reading stories I know will get me in a bad mood.
I’m not sure what I need to do to get help. My oncologist has contacted them, I now have people from the county (or municipality) contacting them as well. I’m not sure of the correct term, but Sweden is divided into state, then a few provinces and then several counties/municipalities. (Explained below.)
The County (or Municipality) and provinces
I AM getting assistance from the county now, which is great. It’s just crazy that the county has to waste resources to help me to get help from the province.
(Sweden doesn’t have a centralised healthcare system. It’s the individual provinces’ task to organise the healthcare provided. Then you have the county, and their job is more about the social aspect. Helping people at home, helping people to get out and socialise.
This system is absurd of course; two agencies that should work together end up working against each other. I should say though that in my case, it’s more the province that is working against the county.
One thing that frustrates me beyond anything is when I meet a new person involved in my healthcare, whether it’s from the county or the province. It’s the, “I know it takes time, but you need to be patient, you’ll get help soon.” I’ve had people telling me that for such a long time that I just can’t handle it anymore. Six months ago, maybe I’d have to be a bit patient. Maybe. Now I should be royally pissed off and get an appointment tomorrow. Sadly, I’m just pissed off, I’m not getting an appointment tomorrow. I went to my oncologist last week and she looked at the records/plans they have for me. I didn’t even have an appointment planned at that time. Last time when I got evaluated by a psychiatrist (which I thought was my new, permanent one), I had to wait three months…
My return, and the Return of my Depression
I mentioned above that I wasn’t sure two weeks ago how I’d react if I didn’t get help immediately. I was pretty sure it’d be over for me. Once “next week” arrived, I instead felt like I wanted to start blogging again.
This is the paradox; when I was more depressed but in a different way a year+ ago, it was easier for me to write. I’m back right in to that position. I’m not sure why, but it is what’s happening.
I now feel little joy in gaming, RCs, photography. Pretty much everything other than blogging/fixing some technical details with the blog.
I’ve got no appetite and thus have a very hard time eating – just like last time – which is difficult at best, and downright dangerous at worst, for a diabetic.
I’ve said this before, but I’ll repeat it to new readers; when I got this very severe depression almost two years ago, I wanted to get help to process what I went through during my treatment. (I now have an official diagnosis, which is something very close to PTSD.) I thought I’d be met with open arms by the healthcare system, now that I finally wanted to deal with this issue.
But evidently, this isn’t what happened. I wanted the wounds to heal from the inside and out, and not from the outside in. That’s too late now; the wound is infected and will have to be ripped open again, during this process.
I truly can no longer find words for the way the psychiatric unit is run; how they treat me. It’s beyond abysmal.
(It’s worth pointing out that my province’s hospital, Uppsala Akademiska Sjukhuset, is notoriously subpar, and the psychiatric unit has an even worse reputation. (There have been many reports regarding this in regular media, there’s a steady flow, it’s not just me. This is my local newspapers’ category regarding the mental health unit at UAS…)
Youth Cancer Europe – Making strides!
As I mentioned, I had to take a hiatus from YCE. I was meant to work with a group of other members to write a white paper for the European Parliament. This white paper was finished and presented recently to the European Parliament, and its impact has been greater I’d ever hoped for.
I’m very proud of what my comrades at Youth Cancer Europe have accomplished. This feat has been reported on by the BBC here and here and several other news outlets as well. It’s amazing; Brad is a great guy and I’m very happy to see him bring to attention to many of our issues in a scope greater than anything I’ve seen. That anyone has seen? I don’t know. Anyway, YCE has also hosted an event to bring attention to discrimination against cancer survivors as well. Read more here.
As proud as I am of these accomplishments, I am frustrated to have had to take a break during this time. I’d been blogging and tried so hard to keep going for a very long time, but I ran out of steam. I get even more frustrated thinking of the cause – a lack of help from the healthcare system and the support from the welfare system at large.
Getting good healthcare, or in my case, getting any care, it’s truly the very thing we’re fighting for, and it’s because of the lack of it that I couldn’t keep going. If I were prone to conspiracy theories, I’d say it was intentional. Take out those fighting the system by not treating them. However, the state, province and other governmental bodies simply aren’t competent enough to pull something like that off.
I do take great solace in knowing that the work group pulled this off though. It is proof of the strength and excellent project management within YCE. It shows that YCE is a force to be reckoned with.
That being said, I do hope it’s the last time I have to take a hiatus from advocation… -ing. Advocating. Whatever. This is what I want to do with my life; I want to be a patient advocate.
I realise that (seemingly) much haven’t changed for me, I’m still writing about the same issues I have since before the break, which is true to an extent. There’s a difference though; my depression is affecting me differently now. Likely because I got pissed off with all the waiting. Again. This is why I’m back blogging. It’s where I draw my energy from.
As I mentioned above, I’ve started meeting people in a new venue; a venue for those with mental health issues.
I’ll do my best to keep the interest alive for my other hobbies moving forward as well, trying to learn how to move between projects without being consumed by one completely, then losing all interest. This might be difficult though, as it might simply be a personality trait. We’ll see.
Maybe I’ll start to actually blog about these things as well. Who knows.
On a practical note, I’m going to try and have a look into cleaning this blog’s number of categories; I have too many now that overlap. I can’t just change and remove them willy nilly though, as it’d mean deleted categories would show a “404 – Page can’t be found”-error.)
As always, feel free to comment and share this post – it helps me a lot.