28.06.17

Hello all!

It's been a bit of a disastrous week, I must say. My sleep attacks have increased a lot this year, for whatever reason, and as you may have noticed, not a single medical professional seems to give a shit.

I managed to get another appointment at the doctor's yesterday and, surprise surprise, there was no message from CC about it like she promised. So once again I got a useless shrug of the shoulders and not much else until I burst into tears because I've just had enough of begging for help and getting nowhere. So, it turns out GPs can refer me to a sleep clinic without a recommendation after all, the previous X amount of times they've said otherwise were just lies. Awesome.

He did offer me some fantastic advice though which instantly eased my worries about sleep issues whilst at uni: just don't go to uni. Out of context, this is ridiculous enough - it's taken them a year to get to the point where they're ready to offer me any help but now my plans are getting in the way and that's just unacceptable, clearly! The way it's been addressed in the past couple of months has really been so accusatory, as well.

For example, a few posts back I mentioned CC1 basically telling me that I couldn't get therapy bc I was leaving too soon. Which, yes, I agree with - it's a long term thing - but how dare they make it my problem, when I've been sat on my arse waiting for them to actually look into something for eleven months! I've been expecting a sleep clinic referral since January!

It just astounds me that I can say 'I literally can't wake up without help' and 'I'm sleeping 16 hours a day ON AVERAGE' and 'I can't make plans because I could fall asleep at any moment' and everyone treats me like it's perfectly normal? I'm aware that hypersomia is a side effect of depression. I know that sleep. I've lived with that tiredness for 12 years. This is different. This isn't tiredness this is my brain shutting down at random. Sometimes I just want to scream WHY WON'T ANYBODY LISTEN TO ME??

Of course, the 'best' part of this tale is that they all but forced my hand in going to uni in the first place! When I first started seeing a CC (the evil one who made me cry lots and can suck my dick) I was told that I wasn't trying hard enough because I didn't have any 'goals' so they wouldn't help me. Obviously, I wanted to go to uni anyway, but they were the ones who pushed for me to go ASAP and not wait another year. But now it's just too soon and they want me to pull out of it all. Well, they can pay for the room I won't be staying in then since it's a legally binding contract and I have to pay whether I go or not!

I hate that the NHS is so hideously underfunded and uneducated when it comes to mental health etc. I have to explain 'neutral pronouns' 'trans' and 'nonbinary' to every single person that I see. None of them have even heard of it. There's an LGBT poster up in the lobby at the surgery and yet, I am still constantly misgendered and no one has even made an attempt to call me by my chosen name. How can I trust someone with my wellbeing when they can't even do me the courtesy of listening to what I'm saying?

I just feel like, as a patient, I'm not respected or even looked at as a human being. I'm just... a name on a sheet of paper. An hour of work that has to be done. I'm not valued enough for any actual aid, just as a stepping stone so people can feel better about themselves because they ~help people~.

So that's basically been my week. Another session of screaming into the void and collapsing in a heap of exhaustion, partly due to sleep attacks, partly because the whole rigmarole of singing for my supper (or in this case. medication), is such a fucking nightmare.

I went to my dad's on Friday which was nice. Mum's been trying to take me out every few days as well just so I don't sit and stew but it's so difficult when I'm just nodding off in the car instead of in bed. I hate letting her down and saying no but I really don't see what else I can do. It hurts me that my problems are such a burden on her too.

I've been very lucky this week as both Susan (dad's wife) and Lottie got me lovely presents! I got a great new HP tshirt and a beautiful leatherbound notebook with a leaf design that really reminds me of LOTR. I tried to take pictures but my phone camera just couldn't do the colour justice and kept washing it out. Boo! The notebook was a thank you from Lottie for helping them through uni. Something I don't really feel I did - I was just a friend to them like anyone would have been - but I'm so proud of them for getting through their degree, they did amazingly well!

I'm also super excited by the fact my brand spanking new laptop is clever enough to deal with PC games so I've been downloading all and sundry from Steam and playing to my heart's content. Most of them were free but I did buy a few. I have no self control at all, so I've had to force myself to not look at the sale page or I'll just get everything! I've recorded one of said games and released it as a Patreon exclusive which you can find on my page.

As usual, I released two new videos on Monday and hopefully I'll have more for you next week - assuming I'm awake long enough to actually record something!

Well, I'm afraid I don't have a whole lot more to talk about this week. I've been asleep most of the time, and when I've not I've been really fucking illllllll. It's not been fun and my mental health is definitely suffering for it. I really hope CC pulls through and actually follows up on the things she's promised but I'm fully expecting to be led another merry dance, if I'm honest.

Wish me luck, my lovelies!

Xx

21.06.17

Hello all!

It's been another struggle of a week as I've barely managed to stay conscious for most of it. Rather awake today which is a very welcome change, I'm happy to say! I also managed to get my butt into gear and do some more recording which is a bit of a major fucking victory as far as I'm concerned.

So professional I keep recording even with injuries!

I have a very black & white way of looking at things and often spiral out into despair at the first set back; 'oh you had one day off doing the thing? well, it's ruined now you may as well just give up altogether and wallow in self pity in your bedroom for at least the next 7 years.'

With illness (hard to record an audiobook when you've lost your voice, apparently!) and then with the Laptop Black Death of 2017, I was out of commission for a couple of weeks. Perhaps closer to a month, even, but I managed to force myself to stop procrastinating once I was better and recorded three chapters on the trot! Far from completing the work, sure, but this is such a big step for me. I really can't remember the last time I managed to pick myself up like this after a set back, however minor. Believe me, it's not the easiest way to live!

Rockin' the Slytherin garb

There was a small silver lining to my sleep attacks however, as when CC2 came for a follow up visit yesterday, I spent the entire meeting curled up on the couch fighting to keep my eyes open. I'm sure you're all familiar with that sensation where your head starts to nod and keeping your eyelids up seems to suddenly take all of your concentration... Imagine that feeling during an hour long meeting talking about the worst things that have ever happened to you. Now imagine it for a solid month without reprieve. It's something I've been asking the doctor about since I was about 16 (now nearly 25!) and no one seems to really register just how much of a problem it is. I only manage to fight it off about 25% of the time, more than once I've literally just passed out in the middle of doing something. No, it's not like in the movies (*see Moulin Rouge) where you just collapse left right and centre every five minutes, but it is pretty fucking dangerous at times.

I'm hoping that having seen it first hand, she will actually take it a little more seriously than everyone else has and possibly be able to shunt the doctor into some kind of action instead of just 'well no one has told me it's a problem and I can't possibly take your word for it even though it's your medical condition.' I mean can you imagine going to A&E with a bone sticking out of your arm and the doctor saying 'oh no, you need to wait 6 months for an assessment by a different doctor who will then write to me to confirm that is actually a bone - unless he can't be arsed - and then you need to come and see me and remind me about it and only then will I try to book you an appointment for you to look into getting the bone realigned. Which will be another two months, at least. Good luck!'

Of course, this analogy can be applied to about 6 different conditions I'm dealing with so I'm sure you can understand my frustration with the NHS. I mean, I can't really blame anyone in particular. It's just that the system is completely archaic and the govt. don't seem all that interested in giving it a kick into the 21st century. I'm half expecting my DSA meeting tomorrow to recommend a good leeching.

Mum papped me cooing over the cat!

Which is another bone of bloody contention! I sent off all the documentation they requested weeks ago and at 4:45pm today I get an email saying 'oh btw can you scan these items before 5pm? If you can't get in touch.' Unfortunately I'm not psychic and didn't think to check my email at precisely 4:46 so by the time I'd read it, they'd already closed. I know for a fact I've already sent the documents they asked for, and I'm pretty sure they received them since the email mentioned other things we'd sent in the same envelope that they already had hold of. But even if I hadn't, don't you think fifteen minutes before closing is leaving it a little bit last minute?! So now, of course, I've gone into complete panic mode wondering where their copy is, what I can do since I can't scan mine or tell them and whether or not I'll even have an appointment now since they said they can't do it without all documents beforehand. I really hate surprises. I'm too autistic for this shit.

*deep breath in*

Ok. I'm fine.

Other than all of that bollocks, CC2 was actually pretty helpful. I think she could see what I've been dealing with given that my 'care package' - which is supposed to let her know everything I've done so far and a basic medical history etc - basically comprised of 'they struggle with stuff. They will use methods to deal with it.'

She also seemed pretty surprised when everything she mentioned (i.e. 'have you tried this?') not a single person has ever mentioned to me before. In twelve years. I may have only moved 7 miles up the road but it's also about 50 years into the fucking future!

I'm a little sceptical since lots of people like to give me the 'we'll do X, Y and Z' next session spiel but never follow through, but I am allowing myself to give her the benefit of the doubt this first time to see where it goes.

I noticed she was a lot more pleasant with me this time around, I think last time she'd assumed I'd been given all of these options previously and refused them or something so now she has a better idea of what I've been offered she's a lot more understanding. Which is very nice as, if you read last week's blog, I've gone from CC1's 'we're punishing you for going to uni by not giving you therapy lolbai' to CC2's 'we can't offer short term therapy as it's unsafe, however...' which makes all the fucking difference! Last week I cried and felt hopeless, this week I see a glimmer of optimism.

Anyway, we'll see if this one actually goes anywhere.

In exciting news this week, not only have I released my two usual videos, but also a sneak peek at my upcoming audiobook and I set up a Patreon account!

For those of you that don't know, Patreon offers people the chance to become my patron (for only $1!) and get access to behind the scenes sneaky sneaky stuff that others don't get to see. All the proceeds will go towards keeping my youtube channel up and running and providing you lot with great content! If you can't afford to contribute - which I totally understand - sharing my youtube channel or my Patreon page would be an amazing help too!

Semester Aboard was written by the incredibly talented Elizabeth Kirke and I'm so excited to be the voice behind the audiobook!

Phew, that's a lot to take in! Anyway, I hope you enjoyed reading about this week's adventures and I'll see you next week!

Xx

14.06.17

Hello all!

Can you believe it's June already? I always find time such a strange concept. It feels like March and October at the same time. So much has happened and yet not enough to make it feel like months, does that make sense?

Voting is Important

Anyway, for those of you not in the Twitterverse, I must extend my apologies for not blogging last week but I had a bit of a shitstorm regarding my laptop and couldn't do it.

Basically, I'd had my laptop for two months but due to moving and internet problems etc I'd only been using it for a couple of weeks before it started doing a scary thing where the whole screen kind of broke off into small rectangles of static/incorrect pixels. Looking at the screen as a whole you could see what it was meant to be, it was like one of those square puzzles where all the sections have been rearranged but about 300 of them.

I finally acheived my 14 y/o self's dream aesthetic

I wouldn't have minded so much if, upon encountering this problem, PC World repeatedly tried to shift the blame onto me for being a silly little 'woman' who just couldn't possibly understand how the magic clever box works. Of the three times I've been to PC World this year, I have been ignored, patronised, bled on (really!!) and generally treated as though I am an inconvenience. I asked if I could exchange it for a more expensive laptop (and give them more money!!) and was told no. I asked for a straight up refund and, again, was told no. In the end I had to settle for them repairing it. I was told 'it might take a week, it might take 28 days' and sent on my way. No apology, no substitute machine, nothing. When I did get it back the repair sheet said that they'd had to 'tighten some screws' but they still tried to imply it was my fault for fiddling about with settings. Because obviously software has a direct effect on the actual machinery! Absolute blame-shifting bollocks. Now that I have my laptop back (and have purchased a much better one elsewhere) I will never shop there again. I ended up finding a laptop with twice as much memory capacity and a muuuuuch better processor for less money so I won that one, ya fuckers.

[CN: Mental health]

I had a meeting with my CC last week, and the new CC who will be taking over from her now I'm in a new area. It was a bit of a bad note to leave things on and I'm trying hard not to let that mar the whole experience for me.

As you probably know, I've been working with my CC for a while now trying to organise my meds and therapy to help me work on my PTSD and depression. On the whole, this has been the best experience of many that I've had in this field. I finally got medication that works pretty well for me, I got a CC for the first time which really helped me feel like I hadn't just been forgotten about and even helped me with getting doctor's appointments and the like, and I saw a psychologist who actually listened to what I had to say instead of just deciding he knows best. So yeah, she's basically been like a superhero as far as I'm concerned.

I did me an exercise!

But then she showed up on Friday with my new CC and I find out that I'm not getting any therapy after all, my sleep clinic referral still isn't sorted (the referral my psychologist said he would recommend back in January!) and I can't get any help arranging transport to my DSA meeting for uni prep. So that was a bit of a slap in the face. I understand what she was saying about it being too late in the year to begin a long course of therapy with me moving in September, it's just so frustrating that because it's taken so long for everyone to arrive at a conclusion about what to do with me, it's now too late for anything.

So now I'm sat with a stranger in my house who clearly doesn't know anything about my history (she kept asking questions that original CC knew the answer to) and being asked 'is that okay?' about something I can't change and, obviously, am not okay with! I just felt so helpless. There was nothing I could do, decisions about my life have been made for me and I just had to sit there and be told. It's not a nice feeling.

I was really hoping to have something by the time I went to uni - a proper diagnosis and treatment for my sleep, some therapy groundwork to help me get started, but instead I'm left with yet another assessment that went absolutely nowhere. Honestly, I must be the most assessed mind in the country by now. Time and time again, I get some kind of psychological assessment to be thrown by the wayside and forgotten about only to repeat the process a year later. And people wonder why I don't sound hopeful when they offer a plan to me. I'll believe it when I see it, I've been left out to dry too many times.

It perhaps didn't help that this last fortnight I've been really struggling. My physical health has been compromised recently - I've magically injured my wrist by doing absolutely nothing, and I've had some kind of flu/cold thing that's made it very difficult to breathe and swallow. On top of that I've been sleeping more often than not and my mood has taken a very determined nosedive.

I tried to explain this to them but I feel like they were mentally already walking out the door so it didn't really do much. Obviously it's not their fault, their job isn't to wave a wand and fix my life for me, but as the face of my care unfortunately the brunt of my frustrations ends up pointed at them. I'm frightened that, for one reason or another, my meds are no longer as effective as they used to be. It took me almost 10 years to settle on these ones, I don't want to have to go through that again! And if I'm like this now, what am I going to be like in another week, knowing now that I'm not receiving the help I thought I was waiting for? What about the week after that? I can't begin to explain how scared I am of spiralling out, the feeling of being left out in the cold is not a pleasant one, especially on top of the depression I'm already feeling.

[/CN]

Anyway, onto nicer things! In my last post I told you about seeing the wonderful Holly playing in Newcastle and I'd like to share some photos from the event taken by JRR Photography. I'm still thinking about the gig, I've had her songs stuck in my head for nearly a fortnight but it's not the annoying earworm kind it's the 'argh I wish I knew the lyrics to this song because it's so gosh darn good!' kind.

It was such a lovely, intimate gig. I'm really glad I made the effort to go. It was a wonderful experience that will be with me for a long time.

At the weekend, myself and my lovely friend Paige went to Gateshead to see my my pal Kara's awesome band Syd.31. I wrote a review of their debut album a few posts back and finally got to see them live. Everything I saw only further backed up my initial thoughts from listening to their album. The album is original, unique and a lot of fun. It's a taste of what's to come and a taste of what you could experience seeing them in person.

Every drum beat is amplified, every scream more raw, every guitar riff distorted and pressing in on your ears until it fills your head with their message - we are the freaks and we're not alone. They played like there were thousands of fans screaming their name, and I think I speak for the entire, modestly sized crowd, when I say that Dr Magic connected with each and every one of us, pulling us further into the gig, almost compelling us to jump and scream with him.

One of the most tragic misconceptions about punk is that it's hard and scary and not fun. Syd.31 give a huge middle finger to that notion, they may be thrashing and screeching but they're doing so for us. They're bringing us into their world, giving us a home, a community, a sense of belonging as we build up a sweat dancing and moshing to the words that entwine around us poking fun at pride and vanity and fitting into your label. Why shouldn't you like Busted? Why shouldn't you sing along to Aqua in your pants? Why shouldn't you send a message to Maggie Thatcher's clone by headbanging to a Mancunian industrial punk band in the backroom of a pub? If that gig taught me anything, it's to find what you love, grab it with both fucking hands and when someone tells you you don't fit ask them what are you so afraid of? 

Photography by Will Binks

A fabulous week for music, by all accounts.

I finally finished work on my Spare Oom (barring a few of mum's possessions that haven't found a home yet) and I'm in love. All my DVDs proudly on display, all my consoles set up and ready for action and all of the people I look up to adorning the walls and watching me work. I wish I could take this room with me to uni, it's my perfect little safe haven. Mum has now renamed it the Middle Aged Lady Room so I'm not sure why she doesn't feel more at home in it to be honest!

Fairy lights make everything better

Aside from the days when I didn't have my laptop, recording is going really well and there's lots of goodies for you to watch on my channel! I'm excited to get back into it now with my new machine. I bought myself a cheap mic so hopefully that will deal with some of the sound issues I've been having as well. I got a message from a total stranger saying I was one of his favourite youtubers which was so lovely to hear. The people who regularly watch my vids have been really supportive too and I can't thank them enough for sticking with me as I learn about my newest endeavour!

A final positive to end on; I've been making some really good friends on twitter of late. I've been following cool queer feminist types for a long time but never counted myself among them. I mean, queer and feminist, sure, but I never really thought I had anything of value to add to the conversation. They were just people I aspired to be more like. Now I'm chatting to them and making friends and feeling more... worthy, I guess. It's nice. Plus new friends is always good! The positive of laptop trouble is that I've also been talking to Lily and Mel way more and reaffirming our really strong connections. It's good. I'm very blessed with my online friends, I just wish I got to see them more in real life too!

Xx

31.05.17

Hello all!

It's been a funny sort of week, I had more plans than I've ever had before but ended up doing about as much as I usually do when flu suddenly struck me down like an angry Zeus. I feel like I haven't swallowed in days, it's so difficult and painful to do so!

I'm afraid this post will be relatively short as, though I am better I'm still suffering from a lot of symptoms and spending a lot of my time cuddled up in bed waiting for mum to bring me soup.

Due to this, I missed both Tamsin's debut as a playwright (boo!) and Durham Gay Pride (less boo...) but I did manage to peel myself off the mattress this evening to get to Holly's gig and listen to some lovely music from up and coming musicians! I also spent the evening with Holly's mates, some of whom I have known since school, some I just met tonight. It was a strange sort of mix, being in a group of people who partly know me by my old name and watched me grow up, and others who are just meeting the current product.

One such person was Toni, a girl I went to school with and always looked up to as kind of the 'cool older girl' type but never really spent as much time with as I'd like. It was really nice to see her again and have a bit of a catch up, though I'm sure I barely scraped the surface. Darren and Matthew were also there, who I bumped into at Holly's art show, and who I know from Back In The Day.

It was unbelievably reassuring to spend an evening with the Old Crowd and not have a single person ask about S or mention them or allude to them in any way. I've spent so many years terrified of seeing any of them again because of the inevitable (or so I thought) conversation about them that would ensue. Turns out it wasn't so inevitable after all. Of course, the by-product of this is that the whole journey home I spent getting increasingly paranoid about 'well, they didn't mention S but I bet they were thinking it' which was less than productive.

I'm sure there are people who would say or think about S if they bumped into me again and that's ok. The point is most people, surprisingly enough, don't spend every waking moment planning how to corner me and force me to have a conversation I don't want to have. I'm trying really hard to expose myself to situations and teach myself to believe what I know to be true. S isn't lurking around every corner, neither is the memory of them, ready to strike from another's lips.

If tonight was any indication, this is going to be a very long process, I'm not even sure I'll ever fully get there but if I can learn to ignore it or enjoy myself despite my fears then that will be enough.

Trying very hard not to melt in the heat

Anyway, Holly's EP will be available soon but until then I highly recommend you check her out on youtube and subscribe to her Patreon!

I was super gutted that I missed Tamsin's play, the majestically titled Fingerwank - I mean, who wouldn't want to see that?! - it's been a while since I saw anything at the theatre and I'm always keen to try and support new people in the industry, especially those I've grown up with. From what I've gathered it was, unsurprisingly, a roaring success, and I am determined to make it to her next piece whatever it may be.

Durham Pride was a little less missed after a whole debacle on twitter over blackface and whether or not it was a problem(!). It rained all day and there was quite a presence of armed police so I think perhaps wrapped up in blankets was the best place I could be. I was a little disappointed that I didn't get to take my sister to her first pride but at the same time I would have been very disappointed in myself for advocating a Pride that would rather plug it's ears than admit to the very real issues it was perpetrating.

I've done a fair bit of work on my channel this week; I've even started recording a whole new series! I'm so pleased with how it's going and there's a possibility of a collaboration in the near future with another Let's Player who I quite enjoy called ZigZakk.

I'm afraid I'll have to leave it there, folks, as a headache is looming and I think I ought to go back to bed. I'll see you again next week!

Xx