New job and disability

Hi everyone! I said I would write some more about working with disability. Well, last week I started a new job at my Student’s Union. It’s really good in terms of how useful I feel doing this job and spending my time on it. However, now I feel constantly busy, and it’s really worrying me.

What I mean by this is that despite the job being enjoyable, it really takes a lot of energy from me and a lot of time from me. Since I started the job, I’ve really struggled to motivate myself to relax properly, and I have struggled to write essays alongside doing the work. I still have one essay that I need to finish – but I have work today and tomorrow, and I am honestly scared about how I am going to fit everything else in the current timeframe.

I think it’s important to talk about how individuals who struggle with their disability may struggle with even ‘simple’ tasks or enjoyable tasks because it’s honestly more about energy, time, organisation, and motivation. This may put us in a heightened stress which then makes it harder and harder the longer it continues on.

Now, I’m scared. This morning and last night I received so many emails that I need to address when I get to work and my fight or flight response is strongly leaning towards flight. I feel like it would so much easier for me to just run away, or completely switch off.

But alas, I must persist. I do not get the choice to not work – not at the moment. Thanks for reading.

Coming off quetiapine (Seroquel)

Hi everyone! I hope you all had happy holidays. Mine was… not great. I might talk about that in another blog post. We’ll see!

Today I want to talk about medication, and about how I have made a decision to come off one of my cocktail components. I don’t want anyone to use this as evidence that they shouldn’t go on quetiapine – this is just my personal experience.

Quetiapine is an antipsychotic in higher doses, but a mood stabiliser in lower doses. I was prescribed it as a mood stabiliser, so I was on a dose 75mg for most of the time. This is being lowered to 50mg for the time being to wean me off it. The main side effect is extreme drowsiness – for me, it puts me to sleep within 30minutes – 2hrs reliably. It has a half-life of 7-9 hours, and thus I will be knocked out for at least 7 hours every night.

Pros of quetiapine

  • I get a reliable amount of sleep every single night, meaning that I do not struggle with insomnia that many people with my disorders have.
  • It might have helped stabilise my mood, as I did notice a lessening of suicidal and self-harm thoughts when on the medication.
  • It felt good to go onto the medication because it felt like the psychiatrists were taking me seriously.

Cons of quetiapine

  • If I have something to do in the morning, then I have to go to bed early or risk waking up sedated and unable to function.
  • You are not meant to drink alcohol on quetiapine – as a university student, I almost always broke this rule. This gave me a risk of heart rate problems.
  • I did not feel like it helped my mood enough – I still had very bad mood swings and still struggled with my borderline personality disorder.
  • Despite the pro of it making my sleep easy, it also meant that if I ran out of medication (which I often do), I would not be able to sleep at all. I am currently extremely dependent on this medication, and that is not something I want.

 

So, I am coming off the medication. I’ll make a follow-up post to describe how it’s affecting me to come off it. Unfortunately, there is only a couple of possibilities for an alternative mood stabiliser, as it seems that I react quite strongly to the sedative side effects found in -azipine medications.

MRI Scan – Part 3!

Hi everyone, as promised I am updating you on the progress of my MRI scan. My brain is apparently very normal (with a small thickening of the mucous lining on one of my sinuses… lol). How do I feel about this?

  1. I’m very happy that my brain is healthy, as it’s given me an absolute ton of anxiety over the last weeks, and to find out has really put that to rest. I know that I’m going to be okay now, and my brain is not killing me slowly unknowingly.
  2. …..BUT….. and there has to be a but… I’m disappointed. I’m upset. I was hoping so strongly that they would find SOMETHING because otherwise, nothing explains my high levels of dissociation, my constant migraines, my eyes and their inability to track correctly, and everything else. If it was physical, maybe I could be treated and this would all stop.
  3. I think I knew all along my brain was going to be fine. This has reminded me again that I am mentally ill, and pretty solidly so – and I will be okay one day, even if I’m struggling horrifically right now. I don’t know how long it will take, but I can have therapy and classes to help me.

Overall, I just wish I was better right now. Thanks for reading!

Working with disability

Working with mental illness and disability is, to put it lightly, extremely difficult for the best of people. During my time working at a well-known fast food chain (DcMonald’s…), I would have breakdowns on shift, panic attacks, paranoia episodes, dissociative episodes, etc. I have been yelled at by colleagues and customers, and most shockingly my managers. I’ve since been too scared to work in retail again – which is probably the only place I will be able to work at the moment – and so I have money struggles at the moment.

The only thing I can stand doing is self-employed ad hoc work that is completely up to me whether I can handle it or not. I’ve done some of that now – but given that I have to wait for work from them, it’s still leaving me struggling. It’s far far better than no work or working in retail, and I’m so grateful I can do it.

A lot of disabled people may struggle to even get a job due to biases and prejudice about what we are capable of doing. For example, for DcMonald’s, holding good eye contact is a job pre-requisite, but if you’re autistic or struggle with anxiety, that can be near impossible.

I think being disabled is more expensive than being abled. I struggle with impulse control for spending, or cooking so I buy takeaways, or I do shopping therapy to help myself feel better and less low mood. For example, I bought a Nintendo 64 in the last couple of days simply because I could! Not good for my bank. But look at what my new baby looks like!

N64-Console-Set

What do you think about working with a disability? I think I am going to write more about this, as it’s really interesting to me what we expect from disabled people.

MRI Scan – part two!

As promised, I am making a post about how the MRI scan went. If you have one lined up – I would say don’t worry. It went very smoothly, and everything that I was worried about was completely unfounded. If you are worried about pain – it was actually very comfortable. If you are worried about the results – you don’t get them straight away, it can take weeks. If you are worried about anything invasive – I didn’t get injections, but they should tell you in advance.

My appointment was on time. I was waiting for a little while, but I was early.

When you picture an MRI scan, and the room it’s in, you picture something like this, right?

Well… no. My MRI scan was in… a truck.

A mobile MRI machine. I was completely shocked by this, because I had no idea this was a thing that you can do. Unfortunately I didn’t get a picture. MRI scans take up a lot of power, and I didn’t see any huge cables to the truck! They put me in the machine, and I was in there for about 20 minutes. Everything else was normal. The more you know!

Other than that, the machine was really loud. They gave me earplugs and cushioned my head to keep it straight, but it didn’t make much difference. There was banging noises, loud beeps of different pitches, and humming throughout. In the end, it kind of sounded like music. It was strangely relaxing – possibly because of the white-noise-ish effect; I almost fell asleep. And then I just sort of, left?

I get my results soon, and I have an appointment scheduled in about a month to talk about it. I will update soon!

 

Dodie concert!

Hi everyone! This is going to be a more light-hearted post!

Yesterday, I went to my first ever concert. It was an artist called Dodie Clark, who mostly produces music on youtube. She has also struggled with mental health issues, and so a lot of her songs feel very personal and meaningful to me. It was lovely to see her perform. The crowd of 14-year olds were loving it. But me and dodie are both adults – and I felt a strange connection to what she was saying. These aren’t just cute and cool songs that teenagers like to relate to, but raw and genuine experiences transformed into art.

I bought three pieces of merchandise – a jumper that says “I promise it will all make sense again”, a yellow croptop that says “dodie”, and her new EP. I don’t think I’ll ever stop wearing them! (what mentally ill person does washing anyway…)

I recorded her singing “secret for the mad” as at the moment I feel such a strong connection with it. It’s a little embarrassing, because you hear me singing more than her. But I love this video anyway.

I’m really hoping in a little bit of time it won’t hurt so bad.

Medication and prescriptions

Hi everyone, thanks for joining me today!

Today, I am going to talk about one of the main (annoying) things about being mentally ill. You get prescribed medication, which is meant to do x y and z to help you. You have every intention of taking it, even if so far it’s barely even done x. Now, there a couple of possibilities.

  1. You make an appointment to get a medication review, and you miss the appointment. My GP surgery doesn’t allow emergency appointments for medication reviews, so if I miss one, I have to shamefully beg for another appointment, or just say “well never mind” and miss medication for a few days.
  2. If I actually get to the appointment, I usually remember to ask for more medication. However… If I get the prescription, that does not mean I have medication! I still need to go to the pharmacy and actually get the medication dispensed. Does this happen on time, before I’m right to the last of my medication? Probably 25% of the time. The other 75% of the time, I forget to do it (dissociation) and run out of time to get the medication (lack of reality with time).
  3. I am in that situation now – I managed to find one dose of one of my medications. So, Choco, just go to the pharmacy and get your prescription, I hear you say. Well, another possibility is that I get a prescription, and completely lose it. I was searching and searching this morning, to no avail. So now I have had to shamefully request a new prescription, which can take up to two “business” days. I am so out of touch with reality, that I don’t really know how to deal with this. Probably ration my doses, making my therapeutic level go down? Sigh, why am I like this!!

Don’t take your memory and time-awareness for granted. It really, really sucks when you don’t have a grasp on it, and you’d be surprised how much of your daily functioning relies on it.

Thanks for reading!

MRI Scan

Hi everyone, today I’m going to talk about my scheduled MRI scan – why I’m getting it, and how it’s making me feel.

When I got diagnosed with dissociative disorder, I received a letter afterwards summing up the psychiatrist session. I was scared, worried, and vaguely excited to see that I needed to have an MRI scan. In my next psychiatrist appointment, she explained that it was to check whether the presentation I was experiencing (that is, the symptoms of dissociative disorder) could be a physical problem with my brain.

After a period of misunderstanding – my psychiatrist thought my GP could refer me – I was referred by my psychiatrist to the people who would give me the MRI scan. I received an appointment extremely quickly, which was confusing to me, as I was expecting to wait a long time for it. It will be on the 26th October, so I will probably write something about that experience afterwards.

The thing that is worrying me, or at least giving me conflicting emotions, is… would I rather have a mental illness, or something physically wrong with my brain?

If there was something physically wrong with my brain, then… would it be easier to treat? Would they be able to do surgery, or give me medication that would help? What if the presentations I am experiencing would actually be treated? Maybe I would prefer that.

If there is nothing wrong with my physical brain, then how do I get treated? Well, the answer is probably weeks and weeks of therapy, which can cost anywhere from £10 to £60 a week for a 50 minute session. Can I afford that? Definitely not. However, I am not working, and although working would give me this money, working would also stress me out and lower my mental health anyway.

I’ll have to see how it goes… TO BE CONTINUED!

Who is Choco?

My name is Choco, and here’s a lovely picture of me! (I need to get my hair trimmed and cut again…)

I am a University of Essex student, and I am studying sociology. As part of one of my modules, one of my assignments is to start a blog. This was really exciting to me! I hadn’t checked in advance, which is perfectly in line with my character – luckily it came as a nice surprise rather than a shock.

I immediately knew what I wanted to write about – my brain, or, at least, my mental illnesses. I thought immediately of the possible positives of the process. Maybe it would be cathartic to me to talk about what I struggle with and hopefully inform people about mental illness.

Thus, I apologise in advance for the possibly chaotic nature of my writing, and the way I will spill my thoughts on the page. Not only am I dyslexic, which affects my life in more ways than one – but mostly my writing and reading skills – but my mind is so disordered that I am not sure what the correct way to do this all is. So we’ll see how it goes!

For the objective, I am diagnosed with dissociative disorder (F44.9 in the ICD), emotionally unstable personality disorder traits, comorbid depression and anxiety, and *GAAASP*… finally, gender dysphoria. I have also been diagnosed with specific learning difficulty, which aligns closely to dyslexia.

For the subjective, I like video games, retro things (I have an NES, SNES, and planning to get an N64), art, guitar, drinking and dancing, etc.! I am president of the Feminist Society, and the Neurodiversity and Mental Health Society at my university. I feel very involved in activism and compelled to do my part to change the world.

Thanks for reading, and hopefully you wanna join me on this weird journey!