Posted on April 2, 2021
Autism Awareness Day always has a theme. Officially, the UN sets the theme but different organisations also choose their own themes; for example, I know that autistica has chosen the theme of anxiety. The official theme (the one set by the UN) is ‘Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.’ I don’t feel that there’s really anything useful I can add to that conversation, given that I’ve never been well enough to have what society would consider a proper job and that the career path I’m following doesn’t really involve traditional workplaces. So, instead, I thought I’d write about something different, something that has been a really big deal for me this year.
For so long, I just felt like I was broken. And I felt like I was broken in so many places. I couldn’t understand it. Getting the Autism Spectrum Disorder diagnosis helped but there were still all these cracks, all of these problems that no one could make sense of. I had mental health problems, I had chronic fatigue, I had chronic pain, and so on. Nobody could figure out the whole picture and at worst, I was just abandoned by medical professionals, told that my case was just too complicated. That was the most painful part, I think; these people, many of whom it was their job to help with situations like this, were willing to let me continue to struggle rather than put in the effort and help me. It made me feel like I wasn’t worth helping, the toxic best friend of feeling like I was broken.
But in the last few months, with the help of several new medical professionals and some more diagnostic work, the pieces have all slotted into place and, I think, we might finally have the whole picture. So this is the timeline, beginning in 2016 (I might add dates later but I don’t have them all to hand right now).
(I’ve covered some of this before but I think it’s necessary if we’re talking about said whole picture.)
And suddenly all of the pieces started to click together:
THE MENTAL HEALTH ISSUES (TRD, GAD, OCD, AND BPD) AND ADHD ARE, AT LEAST IN PART, CONNECTED TO MY ASD.
MY ASD AND HYPERMOBILITY ARE LINKED.
THE HYPERMOBILITY LED TO A DIAGNOSIS OF hEDS, WHICH EXPLAINS MY CHRONIC FATIGUE, CHRONIC PAIN, AND OTHER PHYSICAL SYMPTOMS.
Discovering that it’s all connected has been a really helpful and comforting revelation. I’m starting to see each condition as a star in one big constellation and that’s a hell of a lot better than feeling inexplicably broken in multiple places. I still have to deal with everything that comes with each of these conditions, of course, but knowing that they’re all part of the same picture does make my health less draining to think about and manage. It all makes more sense. And I am a person that needs things to make sense. So this is all a really big deal.
Category: about me, adhd, anxiety, autism, bpd, chronic fatigue syndrome, depression, diagnosis, heds, mental health, ocd Tagged: actuallyautistic, adhd, anxiety, asd, attention deficit hyperactivity disorder, autism, autism awareness, autism awareness day, autism awareness week, autism spectrum disorder, autistic, autistic adult, borderline personality disorder, bpd, chronic fatigue, chronic fatigue syndrome, chronic pain, depression, diagnosis, diagnostic process, ehlers danlos syndrome, generalised anxiety disorder, heds, hypermobile ehlers danlos syndrome, hypermobility, multiple diagnoses, myalgic encephalomyelitis, obsessive compulsive disorder, ocd, social anxiety, treatment resistant depression
Posted on January 2, 2021
I think it’s safe to say that we have no idea what this year is going to look like so making resolutions or goals could seem a bit pointless. But considering everything last year, I did make some recognisable progress with my 2020 goals, something I’m really proud of considering how much I was struggling. Yes, it’s a bit of a shot in the dark to make any sort of long term plans this year but I find that having goals like these give me some direction, some structure, which is especially helpful when I currently have so little external structure in my life. (As I said in my previous post, I prefer goals to resolutions: I find that resolutions create unnecessary pressure whereas goals help me to focus on particular areas. That works better for me but then I’m sure that that pressure is helpful for others.)
Since we don’t know what this year will hold, I’m still going to make goals. If I have to abandon them, then so be it but otherwise, they’ll hopefully be a helpful tool in moving through the year, creating some internal stability if nothing else. I’m hopeful that I can make progress in all of these areas: in my physical health, in my mental health, and in my work.
FIND A RHYTHM IN THERAPY AGAIN – The pandemic and lockdown have really thrown a wrench in my therapy sessions. Not only have they been physically disrupted, in the sense that they’ve moved from in person to online, but the pandemic has done such a number on my mental health that I couldn’t even cope with going to therapy for a while. And now that I’m going again, I feel like I don’t know how to do it anymore. I have a really good relationship with my therapist so I don’t know why I’m finding it so hard to talk about stuff; we just end up catching up about what’s happened between sessions. I really want to find a way back to the place where we really dug into things, the big things that affect me and my mental health. I’m not sure how to do it but my therapy sessions are so vital that it needs to be done so we’ll have to figure it out.
PROGRESS WITH MY INVISIBLE BRACES – Given how up and down last year was, I’m surprised I managed to wear it at all but this year I really want to build and embed the habit in what daily routine I have. The main problem is that, often, I’ll need to take a break and suddenly I haven’t worn it in months. So I also want to work out how to take a break without completely breaking the habit.
WORK ON MY CORE – For hypermobile people, the core muscles are particularly weak, which can cause referred fatigue and pain throughout the body. When I was diagnosed, the specialist asked what exercise I did and I talked about how much I loved swimming, how good it feels to exercise without having to bear the weight of my body. She said that swimming is the best possible exercise for a hypermobile person, especially someone actively dealing with pain and fatigue. I certainly didn’t need the encouragement to swim more. Where possible (in the context of the pandemic and lockdowns), I want to keep swimming as much as I can, as well as practicing the basic hydrotherapy exercises I’ve been given. I don’t know when my referral for hydrotherapy will actually go through, when I’ll actually get sessions, but hopefully it won’t be too long and hopefully that will help with the fatigue and pain.
COMPLETE MY MAJOR REPERTOIRE PROJECT – The final module of the Masters is dedicated to researching, writing songs, and creating a body of work around a particular subject. I’ve been really looking forward to this module, and hearing about the subject matter investigated by my course mates from last year (familial connections, identity, and gender transition, for example) and the work they created has only inspired me more. I have multiple ideas that I’d love to work on, although there are two that stand out more than the others. So I’ll have to choose at some point but we’re encouraged to remain open until just before the module starts. I’m so looking forward to really diving into a project and hopefully I can use my enthusiasm to help me get the best grade possible.
FINISH MY MASTERS DEGREE – By the end of September, I will have finished all of the modules and assessments of the Masters, all being well. With everything that’s happened since the start of the Masters, just finishing it will be an achievement in its own right but I really, really, really want to do well. It would be incredible to get a Distinction (that would be my ideal scenario) but, as I said, with everything that’s happened and how much I’ve had to deal with, that may not be on the cards. It might be initially disappointing to end up with a Merit but I know that, given some processing time, I could get my head around it and be proud of it.
MAKE SIGNIFICANT PROGRESS IN CATCHING UP WITH MY DIARY – Due to my university work and the ups and downs of my mental health, I’m majorly behind with my diary (although I do keep rough notes) and while I’m not sure how I’m going to manage this, I want to get the situation more under control. Being behind just causes me so much anxiety. The university work isn’t going anywhere though and I want to do my best there so I obviously need to find a solution to this problem before I can start implementing it. I’m hoping therapy can be useful here.
WORK ON NOT COMPARING MYSELF TO OTHERS, ESPECIALLY WHEN IT COMES TO MUSIC – This was a goal last year but between the pandemic disrupting the entire music industry and my sporadic therapy attendance (in which I’d planned to work on this issue), I didn’t make nearly as much progress as I would’ve liked. This is what I wrote last year and I think it’s still fairly accurate:
“This is probably the hardest one and a lot of the time, it feels unbearable to even think about. While I need to work on not comparing myself to others in general – in all situations – I figure that’s too big a task for such a difficult feeling so I just picked one area. Music has always been my happy place and I want it to stay (or go back to being or something) my happy place and it’s not, when I look at other artists and feel lost and sad and lonely and angry and bitter. So I want to work out – probably with therapy – how to focus on me and not worry about other artists beyond a practical, objective sense. This feels really, really hard so I don’t know if I’ll manage it in a year or whether I’ll even manage to start but I want to so I’m trying to think about it and figure out a place to start because I don’t want to feel all of these things. I want my happy place back.“
Having released more music and received good feedback over the last twelve months, I think my self-esteem and confidence is a bit higher but it doesn’t take much to tip me into that black hole. I really, really want that to stop happening so whatever it takes to avoid those feelings (for the majority of the time, at least), I’m willing to do it and do it for as long as necessary. I want music to be a positive part of my life, not something that’s draining.
FIND MY NEXT PROJECT – As I’ve previously said, there is more content coming that’s part of the Honest project but now that all of the tracks and music videos have been released, I want to work out what my next project is going to be, what the next creative goal I want to work towards is. I may find it during my last two Masters module, I might find it after, or it might find me. I’ve got a lot of ideas I want to explore so I guess it’s just about figuring out which one is the best fit for me in this particular period of time. Whatever it turns out to be, I’m excited. The Honest EP has been such a gift, such a wide and wonderful experience, that I can’t wait to see what the next project has in store for me.
As I said, we have no idea how this year is going to unfold so I don’t know what I will or won’t be able to achieve (in terms of what’s possible with the pandemic and my personal health – physical and mental – in the mix) but these are the areas of my life that I want to work at. If nothing else, last year showed us how strong and adaptable we can be, so who knows: maybe I’ll make progress in all of them or maybe I’ll make progress in entirely different things. I guess we’ll just have to wait and see…
Category: about me, anxiety, chronic fatigue syndrome, covid-19 pandemic, depression, emotions, event, identity, mental health, music, ocd, therapy, treatment, university, writing Tagged: 2021, anxiety, comparing, comparing myself, comparison anxiety, compulsive writing, core muscles, coronavirus, covid-19, debut ep, diary, diary writing, distinction, emotions, exercise, final project, fresh start, goals, good habits, grades, habits, health, honest ep, hydrotherapy, hydrotherapy referral, hypermobile, hypermobility, invisible braces, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, mental health, mental illness, music industry, negativity, new project, new year, new years resolutions, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, physical health, positivity, processing emotions, setting goals, singersongwriter, singersongwriter life, swimming, therapy, university
Posted on December 12, 2020
Since my last week-in-my-life post didn’t include any time ‘at’ university, I thought I’d write another one this semester, one that included uni time and all that that entails.
After three really bad mental health days, I was a bit wary about the week ahead – starting it feeling so depleted. It ended up being a very mixed week, as they’ve all been recently. Maybe it’s an end of term thing: I start off strong but then I hit a wall somewhere in the middle and it doesn’t always take much. I’ve worked hard this semester so hopefully I’ll be able to finish all of my assessment stuff fairly quickly – it’s mostly just polishing now – and get some proper holiday time. Last year, I had to work every day of the Christmas break, only taking Christmas Day off. So some time off would be really nice.
The week in this post began on Monday 30th November and ended on Sunday 6th December 2020.
I slept badly so I took my time getting up and having a shower. I had some breakfast (and ALL of my pills – there’s so many at the moment, what with my normal medication, extra supplements, and some antibiotics) and then I got myself sorted for my session with Richard.
We spent about three hours on the call, working on the production for a new song I’d written, and then just chilling out together, chatting about our uni work, the various projects we’re working on, the tv shows we’re watching, and so on… We’re always texting and we have our Zoom sessions but we haven’t hung out together in months and I really miss that.
When we finally hung up, I was exhausted and what started as an episode of The Split while I recovered turned into finishing the second series. It was really, really good – even better than the first series. Nicola Walker and Stephen Mangan were particularly fantastic. I love Nicola Walker; she was incredible in Spooks, Scott & Bailey, River, and now in Unforgotten and The Split. Her performances throughout this second series have been breathtaking and the ending had me in floods of tears. She blows me away every time.
I spent what was left of the afternoon and early evening working on my assessment essay. Then Mum and I had dinner together before starting a rewatch of Unforgotten (yes, we’re on a bit of a Nicola Walker kick at the moment), while I did some diary writing. I’m so far behind, what with everything I’ve been dealing with healthwise and doing for uni. My anxiety over it is so high but so is my anxiety over my uni work so the two are constantly pushing against one another. I never have any respite from it and it’s exhausting.
I managed to go to bed reasonably early, which was an achievement, especially since I had to get up early the next morning for uni.
Again, I slept restlessly but with disturbing dreams that I couldn’t quite remember when I woke up; it just left me feeling kind of uneasy for most of the day, which wasn’t fun. I swear, I’ve had as many nightmares or disturbing dreams since the pandemic began than in my whole life up to that point. It’s horrible; I really feel for anyone who deals with this generally, independent of the pandemic.
I got up, got showered and dressed, had breakfast and pills before logging into my first class of the day. I could only stay an hour of the two (pre-arranged with my tutor) but we spent that hour identifying and discussing different kinds of hooks and how they’re used in songs. Then I had to sign off for a call about my rheumatology referral. It seriously cannot come quickly enough; the pain in my arm, hand, back and legs is only getting worse as time passes.
Before I got down to work, I checked my Spotify stats and saw that the Honest EP has surpassed 30,000 streams. It’s a weird feeling, knowing that so many people have heard these songs. A good feeling, but a weird feeling. I can’t really describe it.
I spent several hours working on my essay, all but finishing the first draft. So that was a good bit of work done – more than I can usually manage between classes. I had some lunch, some time to dedicate to my diary writing, and then I was signing back into class.
The afternoon’s workshop was a productive one. We got through a lot of songs and we had some really good discussions, despite only having an hour. Everyone was really lovely about my song, which meant a lot since it was such a personal one. I also had questions about the grading criteria and learning outcomes because I find the language very unclear and that lead to a good conversation about the assessment as well as inclusivity and accessibility of the course. So it felt like a really positive class, in all sorts of ways.
When my class finished, my Mum and I FaceTimed with my Granny for her birthday and I also got to see my aunt (they’re in a bubble together), which was really lovely. I don’t think I’ve seen either of them in person since Christmas, which has been hard, even knowing that it’s the right, responsible thing to do. It a weird world – a difficult world – when the best way to love someone is to stay away from them.
I also FaceTimed with one of my parents who’d had a particularly rough day. So it was a very social day! It was good to do but I definitely felt drained afterwards.
I was having some downtime, doing some blog writing and watching TV, when another of my other parents called me and told me to change channel to a very cute programme about puppies. It was indeed very cute and it did make me wish for a puppy again, not that we intend to get one in the foreseeable future – we don’t have enough time to properly devote to one so it wouldn’t be fair. But I’m always up for any puppy time I can get.
But the best bit was how one of my cats, Mouse, reacted to it. She was fascinated by the puppies, even patting the screen, trying to touch them. It was utterly adorable. She sat patiently through the advert break and was just as absorbed by the puppies when they returned to the screen. She watched intently for the rest of the programme and then, when the credits rolled, she got up and walked away. It was the funniest thing.
So that was very adorable.
Mum and I had dinner with another few episodes of Unforgotten and I finished my essay. Well, the first draft anyway. It needed a read through and a tidy up before I sent it off but what I’d wanted done for my tutorial session was essentially done. A productive day’s work and in bed before eleven: not bad at all.
So Lockdown 2.0 has ended, not that it felt like much of a lockdown. If you’re going to call it a lockdown, then you have to do what you did in the first lockdown and shut everything down. Otherwise it’s not going to make a difference, people are going to have even less faith in it as a safety measure, and they’ll flaunt the rules because they don’t think it matters. It’s been driving me up the wall. I’m so frustrated: with the government, with the people ignoring the rules (and boasting about it), anyone who is putting casual convenience over the safety of others… Yes, that’s a generalised statement. I’m aware that there are important and necessary reasons to go out but there just seem to be so many people who just don’t care that we’re still in a pandemic and I find that incredibly distressing.
I woke up at eight and intended to get up but then suddenly it was quarter past nine so I must’ve accidentally gone back to sleep. I did manage to get up then and headed straight for my desk to record the vocals for the song I’d been working on with Richard. Even though I love it, for some reason, I find it really hard to motivate myself to start recording so it seems that the easiest way is to just get up and do it before I can get into a procrastinating mindset.
That done, I had breakfast and a shower, leaving me with just enough time to tidy up my essay and send it to my tutor before heading out to have a blood test. I had one a month or so ago and it showed dangerously low Vitamin D levels so I’ve been on a high dose Vitamin D supplement to try and build them up again. This blood test should tell us whether they’ve helped and what the next steps are.
It was almost dark by the time we got home so we settled down in the living room, lit a fire (one of my favourite things about this time of year and about this house – the fireplace) and continued watching Unforgotten. I also kept working on my Lockdown 2.0 blog post. I’d been keeping the list updated throughout the lockdown so it was just a case of tidying it up, adding all the right links, and writing an introduction and conclusion.
I had to stop in the middle to sign in to my tutorial. I had a really good session with my tutor. He was complimentary about what I’d already done and had some really good feedback so I feel pretty good about my next steps. I know what I need to do and now I just need to do it. Then I get one more tutorial before the holidays for any final feedback or guidance. The deadline is in sight, which is more than a bit scary. I just really, really want to do well.
I was exhausted afterwards but I still managed to finish and post the Lockdown 2.0 blog. So I guess it was a pretty productive day.
That done, I had a quick scroll through social media and saw that people had started to post their Spotify stats of the year, both as listeners and as artists. I always find this difficult, regardless of any rational talking to I give myself, regardless of whatever I’ve personally gone through or achieved that year; it just taps into my lifelong insecurity of not doing well enough, not being ‘good enough.’ So it’s not easy. This year should’ve been different, with four of the five tracks from my EP being released since January, but Spotify doesn’t count anything after 31st October and with ‘Honest‘ coming out on 30th October, only one day of its streams were counted. So my most successful song wasn’t a part of my Spotify Wrapped, making it completely inaccurate. So I haven’t shared it – haven’t wanted to – and I feel a little bit robbed of that. I have included the percentage increases here but in reality, they’re a good bit higher since ‘Honest’ did so well.
Hopefully next year, or whenever it is that I release more music, the figures will be more accurate and I’ll feel confident in sharing them. This ‘comparison anxiety,’ as my friend called it, was something I really wanted to work on in therapy this year but even when I’ve felt able to ‘go’ to therapy, it’s been difficult to get much further than damage control around the pandemic. That’s been really difficult – a real frustration – this year. I’ve just felt completely stuck at therapy: while I want to move forward, I’ve only felt able to maintain the fragile balancing act I’ve managed to create. And I haven’t even been able to do that a lot of the time.
Early evening, my Mum and I FaceTimed with my Granny before having fish and chips with one of my other parents. We watched the new episode of His Dark Materials (Series 2 Episode 4) and it was so good. Oh my god, that cliffhanger!
I was just getting ready for bed when I felt the pain in my back. It had been aching all afternoon but that’s not unusual right now but then it started to get worse, sharper and higher. It came on so suddenly that I couldn’t get from the bathroom to the bedroom without Mum’s help and then, when I collapsed on the bed, I couldn’t move because the pain was so bad. It seems to come in waves: there’s the pain and then it surges like a series of electric shocks before finally (FINALLY) receding back to the original pain level. And I never know how long it will go on for; sometimes painkillers seem to make a difference and sometimes it seems to go on for ages regardless. I’m not entirely sure how long this one went on for but it was at least half an hour. And then it always takes quite a long time for me to get my body to relax afterwards, my muscles having been so tense while the electric shock pain was so bad. So even though I was exhausted, it took me a long time to get comfortable and drift off.
It took me a long time to get up because I was so stiff and sore. The rheumatology appointment can’t come soon enough. I struggled through breakfast and a shower and then had a Zoom production session with Richard, continuing to work on the song we’d started on the Monday. Considering how out of our normal styles the song was, I think we did a good job, especially for a demo and I’m definitely interested to hear what my class have to say when they hear it.
We also had some chill time, just chatting and hanging out, almost like we would if we were actually together, which was really nice. We’re coping with remote sessions but I cannot wait to hang out again properly, have face-to-face writing sessions, and actually do things together. Or not do things together but do that together in the same room, if you know what I mean.
When we finished, I did a couple of FaceTime calls with family and then collapsed on the sofa. I was completely exhausted. Me and Mum watched the last episode of Unforgotten Series 3 and oh my god, it gets me every time (if you know, you know – I’m not going to spoil it but the acting is incredible). Nicola Walker does not get the credit she deserves, although from what I’ve read in interviews, she seems to be pretty happy just buckling down on great projects and not doing the whole spotlight thing. (I’m so annoyed with myself that I missed seeing her in The Curious Incident of the Dog in the Night-Time – I would love to see her on stage and it’s such a great book.)
Mum and I were having a relatively chilled evening until I asked her about her call with my doctor. There had been multiple things to update her on and ask about but some of the advice she’d given was just really triggering and upsetting. I will talk about it at some point because I think it’s an important thing to have conversations about but it’s not something I’m personally ready to talk about yet. But it really upset me and just killed the warm, cozy mood of the evening.
And then, to make matters worse, Mouse (the cat) brought in a dead mouse, which is something that almost always sets off a meltdown (fortunately Mum understands this and is okay with dealing with it while I do my best to avoid said meltdown). I managed to remove myself quickly enough that I didn’t have one but it was just the final straw on what I could handle that evening so even though it was still quite early, I went to bed. It was all just too much.
I slept for about twelve hours but I still woke up feeling exhausted, depressed, and miserable. I feel like I spent most of the first lockdown working really hard to get my mental health into some sort of box so I felt like I wasn’t constantly overwhelmed but most days, it still feels like I’m walking on a tightrope and it takes so little to knock me off and back into that suffocating depression. And that’s exactly what the night before did.
I really struggled all day. I just felt completely unmotivated and so, so tired. I was also having to deal with side effects of my antibiotics – they left me with a disgusting taste in my mouth all the time – which was just an extra strain. I only had one day left so I tried to focus on that but it just felt so much harder than it would’ve had I not already been feeling so awful. I did manage to finish and post the blog post about What’s Next for the Honest EP so that was good to do and helpful for my mental state – ticking stuff off my list always gives me at least a bit of a boost.
The good news of the day was that Kalie Shorr had re-released (I guess) her debut album, Open Book (which I wrote about here), but as Open Book: Unabridged, the original album plus four more songs. ‘My Voice’ and ‘Lying To Myself’ had already been released as singles and she’d played ‘Eighteen’ during her livestream concert but ‘Out Of It’ was completely new, which was really cool. They’re all stunning songs and all in their own way. ‘My Voice’ is empowering and unapologetic, as well as a very effective middle finger at the Country labels in Nashville. ‘Lying To Myself’ paints an aching authentic picture of insecurity after a break up with incredible lyrics like, “I picked out all my favourite things you said, then like a delusional architect, I built you up like a house of cards” and “You liked it up on that pedestal ’cause damn, you looked incredible, but coming down’s inevitable.” ‘Eighteen’ is a brutally honest, heartbreaking song about looking back at a relationship that really wasn’t okay, where you were all in but you were only ever treated badly. And ‘Out Of It’ is similar to a previous Kalie song, ‘Awake,’ but this time, she’s saying ‘no’ and isn’t going to get pulled into the bullshit; this time, she’s cutting the cord between herself and the other person. And because I’m a lyric nerd, here is my favourite (or one of my favourites) from each song:
My Voice: “Too rock for country, too country for punk / But who said I had to pick either one / Tattoos at the Opry / I could cover em up but it’s not me”
Lying To Myself: “I’m a little out of touch with reality, it’s never been that nice to me / I like the pictures I paint the best”
Eighteen: “I see you out with younger versions of me / While I’m trying to find who I used to be / I’m terrified that you and I will always be chasing eighteen”
Out Of It: “Your mom and dad put you through hell / You tell your secrets ’til you scare yourself / It’s a big dramatic entrance then you leave / And now I’m the girl I said I’d never be”
Late afternoon saw me dragging myself through some preparation for a mental health assessment that I have coming up, which was another thing I needed to do. But I was so tired that it took forever and I spent a lot of the time it took with my head on my arms, just trying to think. It was just a really bad mental health day. There was no way around it so I just tried to get through it. I was too tired to do anything really but I still tried to write my blog post about the UniversitiesUK Conference. I find it so hard to just do nothing; it causes me a lot of anxiety so even when I’m exhausted, I’m still desperately trying to do something.
By necessity, it was a quiet evening and I went to bed early, all too aware of how soon I had to wake up again to watch Maren Morris’ livestream concert.
After MANY alarms, I struggled up at 2am to watch Maren Morris’ livestream concert. It felt very strange to not be a part of the crowd, singing (or screaming) along with her but it was so good to see her perform and hear her gorgeous voice again. It was very comforting, like a reminder that some things don’t change. The world might’ve turned upside down but Maren Morris is still Maren Morris, an exceptional songwriter, singer, and performer. So I was really grateful that she and her team put together this show for us.
I didn’t get back to sleep until about five and couldn’t be roused for anything. I eventually woke up at twelve and then I felt so tired and heavy that I could barely get out of bed. I spent several hours unable to do anything but lie on the sofa and watch TV. Disrupting my sleep patterns always throws me for six and with the depressive feelings still very overwhelming, I was really struggling.
Eventually I managed a shower, which completely exhausted me. It also makes me feel sick and dizzy to stand up for the amount of time it takes to sort the shower, have the shower, and then get dried and dressed. One more thing on the list of things being investigated.
Back in the living room, I put on Lucifer and attempted to do something productive. Mostly I ended up jumping between this and my diary, writing a few sentences here and there before switching back, just too tired to think enough to write anything decent. So that was frustrating, plus I had the nerve pain in my leg again – not the electric shock version but the bit that always comes before that (even if it doesn’t turn into said electric shock feeling) where it aches deeper than feels physically possible. So that didn’t help.
Mum and I had an early dinner and then she went for a swim. I really wanted to go and felt like I should – I’d been looking forward to it ever since the pool closed for lockdown – but I just had absolutely no energy. So she went and hopefully I’ll feel able to go next time. I got some good writing done though, so at least the time didn’t go to waste.
Having gotten up so late, I ended up going to bed too late, which was a bit of a pain. My sleep schedule is so easily knocked off course and then so difficult to correct. It was worth it though. Seeing Maren Morris perform is always good for my soul.
I slept restlessly and struggled up around ten. I still felt incredibly depressed and it took a huge amount of effort to just get out of bed, into the shower, and up into the living room. I had a quiet day, not that that I think I could’ve managed anything else. I managed to finish and post my blog post about speaking at the UniversitiesUK Conference. I also finished all the paperwork for the upcoming mental health assessment and worked on the interview questions my university had sent me about doing the conference (that interview has since been posted). So, considering how awful I felt, I did manage to get something out of the way and check some things off the ongoing list, which – as I think I’ve said – at least helps me to keep my mental state from sinking lower. Having said that, I don’t want to promote the idea that being constantly productive is essential for your mental health; I’ve just found that, if I can tick something off of my to do list, even if it’s something tiny, then that can help me to keep moving forward, help me not to get stuck in my depression. It doesn’t always work; sometimes I just have to surrender to a bad day and hope that the next one will be better. But trying , even if not succeeding, does seem to do something positive.
In the evening, one of my parents came over and the three of us had a chilled evening, eating dinner in front of the fire and continuing our rewatch of Lucifer. It was gentle and undemanding and I did feel better for it. I often simplify my mood into two levels: surface and deep. And in this case, even though my deep mood was still very depressed and twisted up, my surface mood was a bit lighter. Calling it a surface mood doesn’t, to me at least, make it any less important than the deeper mood; it just means that it’s the mood that deals with the day to day stuff while the deeper mood is the one that you carry inside you and the one that sits with all the big, important stuff in your head and in your life. I guess, I see this mood as the one that’s so intricately intertwined with a person’s overall mental health. For example, in the previous few days, I was depressed on both levels (I’m not sure how good a job I’ve done of illustrating that but it’s the truth) but after the Sunday evening, my surface mood started to lift out of that depressed place. My deeper mood was still there though (and still is as I post this). But the lightening of my surface mood did make it a bit easier to face Monday and the coming week.
I tried to go to bed early but as usual, failed. I swear, I’m desperate to sleep all day and then, at about seven o’clock in the evening, my brain snaps on and starts firing wildly, almost too fast for me to keep up with my own thoughts. It’s so frustrating. It’s almost as if my brain has got day and night confused.
So there you have it: another week completely different from the last. I think I’m grateful for that – it must be better than feeling like you’re stuck in a hamster wheel surely – but it’s not without it’s difficulties. When planning is the thing that makes life easier to bear, it can be hard when each new week seems to bring something unexpected.
You guys seem to like these posts so I’ll be sure to do another one soon but probably not until the new year. Touch wood, I can get all of my coursework done in the next ten days and then I can have some time off (although I’m not exactly sure whether it will feel like time off – my brain already has an anxiety fuelled to-do list waiting for me – but I’m going to try my best.) Anyway, I hope you enjoyed reading this and I hope to see you in the next post.
Category: animals, anxiety, body image, chronic fatigue syndrome, covid-19 pandemic, depression, emotions, favourites, holidays, medication, mental health, music, ocd, sleep, therapy, treatment, university, writing Tagged: a week in my life, anxiety, asd, assessment, autism, autistic, autistic adult, autistic spectrum disorder, autistic student, blog writing, cat, cfs, christmas, christmas holiday, chronic fatigue, chronic fatigue syndrome, chronic pain, comparing, comparing myself, comparison anxiety, compulsive writing, concert, coproducer, coproducing, coronavirus, coursework, covid-19, depressed, depression, diary writing, doctor, emotions, essay, essay writing, facetime, family, family of cats, fatigue, favourite lyrics, feedback, his dark materials, holidays, home recording, honest, honest ep, insecurity, interview, kalie shorr, livestream, lockdown, lockdown 2.0, lockdown 2020, logic pro x, lucifer, lyrics, maren morris, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medical advice, medication, mental health, mental illness, mood, my cat, nerve pain, nicola walker, obsessive compulsive disorder, ocd, online concert, open book, open book: unabridged, pain, pandemic, pandemic 2020, part time masters student, part time student, production, productivity, recording, remote writing session, richard marc, richard marc music, sleep, songwriting, spotify, spotify streams, spotify wrapped, the split, triggered, unforgotten, university, vitamin d, vitamin deficiency, week in my life, writing, writing partners, zoom, zoom calls, zoom writing
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…