What Does Memory Loss Feel Like?

Welcome to my office! Aka, my brain. Think about having a filing cabinet in your room; a good solid one, that has been kicked around and sat on and opened & closed relentless times. That’s memory, right? Plus stacks of files around that are all the stuff you’re currently dealing and interacting with, and then post-it notes stuck all over the place because they’re the things that are for right now and you won’t need in five minutes. It’s a mess, but an organised one, yes?

But one of the side-effects of long-term depression is memory loss, and over the last 1o-15 years, I have been finding that I can’t recall things. Can’t find the memories. Can’t find the words. I was actually relieved when I learned that memory loss is a side effect, because it felt like my memory was draining much faster than it should have been – and despite everyone else’s “har har, yeah, I get that!” – it felt worse. It’s not bad, not yet, and I work around it, but it is worrying.

And I thought… actually, for someone who doesn’t live with this: can I explain what it feels like to not be able to access a bunch of my office-brain?

The little day-to-day stuff – I just can’t find the post-it note I need. I know that word, but where is that damn bit of bright yellow paper? Ah, here! That’s the word. Previously, I might have had it stuck to my hand, or immediately grabbable – now, it’s somewhere on my desk… and so there’s sometimes a delay as my brain hunts through the words, trying to get the right one! Although I am finding, over the past year, that the post-its are harder to find. That word I want; it used to be on the tip of my tongue, and went from being immediate, to a second or two… and now it’s more often than not failing to come, and I sometimes can’t even recall the shape of it – I substitute a pink post-it for a yellow and I get the word wrong, even if it’s the same vague association. (This is what I mean by “it’s getting worse” – I do have some sort of objective benchmarks, as well as a feeling.)

Some things have a nice, reassuring bulk of memory; friendship with a long-time friend, for example. I know I’ve got all these good memories; a bastion of warmth and tough times and good times and laughter and shared things. But I don’t need to access that; it’s a nice solid filing cabinet that I can sit on, so it doesn’t exactly matter what’s inside it. That’s not too bad; I know the cabinet is there, even if I don’t need to get into it right now.

Some things, I need to get into the cabinet, but I can’t pull the memory out. I had Thornton’s nut toffee recently, completely randomly, and it sparked… something. I know I have a memory associated with that taste, but I can’t find it. I can’t pull it out of the folder. It’s just… not accessible to me right now.

And some things, the memories simply aren’t there. I open the cabinet and it’s a blank; there might be one thing, but nothing else around it. I sometimes have a bright memory linked to a photograph, or a specific moment; but often, the surroundings will be blank. You know the way people often say “oh yes, that trip to X, we did Y and Z” – I don’t have those Y and Z memories. Or I’ll have one or two where other people have ten or twenty. The memory folder that once had a lot in has been whittled down, somehow, and just isn’t as bulky.

And some things are just blank. Gone. I know I should remember… but I don’t. Just grey emptiness. It’s not even that the cabinet is locked; it’s that it’s not even there, or the folder is completely empty. I’ve got a photo somewhere of my family on a trip; I must have taken the photo, as I have it, and I think it’s Florence… but I have no memory of that trip. Zilch. It’s just a photo that I can piece some information together from.(I actually have “Florence 2014” written on it, so that’s something… but can I remember the trip? I mean, I can’t really remember 2014!)

And, honestly, it’s just normal now. I think the terrifying thing with memory loss is that you get used to it; I’ve been learning coping mechanisms for the damn-what’s-that-word, but I can’t do much about the rest. I keep a diary, but don’t keep detailed notes – because what help are notes, if they don’t actually help you recall? And I’m lucky that it’s not yet too bad, and it’s only going slowly – so I am, objectively, fine. I can recall what I need to (mostly), and I know people and places. So I’m just working around a slight issue with wonky filing cabinets and lost post-it notes, and it’s fiiiiine.

(If you catch me pausing when I talk, or if I hesitate, the memory thing is probably why. I know the word, damnit, I just can’t actually find that goddamn bright pink post-it note right now!)

My brain is weird, and wonderful; and also incredibly frustrating at times. But have a small glimpse into what it’s like to have a filing cabinet that you can’t open – and post-it notes stuck everywhere!

Adventures in Therapy

I’ve been having fun for the last nine months or so, trying to get some help to sort my head out. And by “fun”, I mean “want to scream at something and am probably more screwed up now than I was when I started.”

So, I figured: I’m feeling depressed and grey and numb and I’m coping, yes, but I’m not necessarily getting any better. Let’s see if someone else with more knowledge/experience/solutions might be able to help?

Talking Space

TalkingSpace is offered in the UK via the NHS, as a starting point for any mental health issues. You can self-refer, which is nice (saves going via a GP!) and they cover a wide variety of issues and problems.

However, the downside is that They Have A Checklist. You must work your way through this Checklist, because they need to make sure they’ve offered you all the (cheaper, quicker) forms of help, and make sure that you’re Doing Them Properly, before they can even think about offering you anything else.

And saying that you’re already doing X doesn’t count, because you don’t know what you’re talking about, and you might be doing it wrong.

(I can understand the rationale behind this, because even the most experienced person can learn new things – and I have always tried to be open to new therapies and new courses, because if I even learn one new thing, then that’s a bonus! But it also feeds mightly into the “You’re Doing Your Own Mental Health Wrong” and being outright dismissed when you say that you already know something… not guaranteed to help anyone’s mood.)

I’ve summarised my frustrations with CBT before but, of course, by turning up with Depression and Anxiety, that’s top of the list of solutions. And being told to do it again… fine, I’ll do the online course. I’ll get the tick in the box. I went through the entire course in a week, making helpful little notes as I went, and I think the person at the other end of the phone was both irritated and resigned when we had the next phone appointment; I had told him that I had 15 years experience of CBT, after all…

We had a conversation on general life; am I exercising enough? Relaxing enough? Eating well? Sleeping well? (Yes, yes, yes, yes.) He then suggested that maybe I wasn’t using my personal relaxation time correctly, and not doing things that aligned with my values. (Because of course, I can’t even relax in the right ways.)

Another check sheet. Another list. I sweetly pointed out how everything I did to relax did align with at least some of my values.

“Well, it sounds like you’re doing everything right…”

Ya think?!

It’s not like I’ve lived with this for half my life. It’s not like I’ve learned to function with it, and I am doing my best to GET MYSELF WELL. I am doing my best to make sure that everything I do benefits myself – and that means staying well, staying healthy, exercising as best I can within my body’s limitations for that day, making sure I relax, making sure I keep working and doing and keep my brain active.

I. Am. Goddamn. Trying. And for every single mental health service to start with “Well, you’re not doing it right” gets exceedingly wearing.

(Although, I admit, they are obviously coming from a place of wanting to teach you something, because if you knew it all, you wouldn’t be asking for help? Hence my philosophy of being open and saying yes to things, in the hope that maybe I can learn a new way of doing something, or find a way that works better for me. But sweet zombie Jesus is it frustrating to constantly be told I don’t know my own brain.)

BetterHelp

So during the six months that it took TalkingSpace to work through their Checklist, I took things into my own hands, and tried BetterHelp on the recommendation of a friend.

It was… ok. It’s quite easy to get set up on, and the major benefits of it are that you can pick your therapist (and switch very easily), and also schedule sessions very flexibly. It’s all done via the website/app, so the therapist never knows your phone number, and you have access to a chat feature and “I need to contact you outside of a session” messaging whenever you need.

The downside of it is that (at least I found) most of the therapists are in the US, which meant odd scheduling hours, and it was quite hard to pick someone; I could understand if you need someone specifically for family therapy, or don’t want someone religious, but I just… needed someone to talk to? It is also somewhat expensive – I had a code for two free weeks but only managed to schedule one session in that time, which isn’t really enough to get to know someone. So, mixed feelings at the start.

I got to talk a bit in the first session; there was a questionnaire to do, which helped a lot as I felt it covered a lot of the background info, so the therapist was fairly up-to-speed on everything. We spent a while chatting about everything; home, family, mental health background, what I felt the problem was. The therapist was fairly chatty too, so I learned a bit about them, but it was in a good back-and-forth way, so that was nice.

Second session was a bit more frustrating. I found it harder to talk; the therapist spent more time talking, which was ok, but again not the most helpful thing when it’s talking about how I should feel, or making assumptions. The break point for me came when we were chatting about strategies, and they suggested dreaming more – which, of itself, is a fairly good suggestion… but not a great one for me. I have always found it very hard to visualise anything in the future (I never had any sort of career plan, for example) and that, combined with the fact that I have had things that I’d had as life goals, and then walked away from them… it’s not really something I enjoy doing. Then add in the fact that (not being immodest, but…) I could probably do anything that I wanted to, IF I wanted to – and that’s the problem. I can dream about owning a bookshop-cum-coffee shop*, but a couple of minutes’ thinking tells me that it’s a really daft idea, particularly in the current economic climate – and the fact that I hate dealing with people most days. I want to run the book side, and have someone else run the coffee side! Add in locations, rents, business problems (I already run Book Polishers, so I know some of the business fun) and dealing with the general public, booksellers, book buyers… it’s not a fun dream. I could do it: I just don’t want to. And so dreaming, for me, becomes impractical – and it’s not fun. There aren’t any “pie in the sky” things; it’s too easy to bring them down to earth.

And then the therapist spent fifteen minutes telling me about their dream, and what they wanted to do. (Run a heated greenhouse cafe in a wintery US state, which does sound fantastic – being able to go somewhere warm and humid with beautiful flowers when it’s cold outside? Bliss!)

But… seriously? I am paying for this service. I am the one trying to fix myself. I am the one needing help. Why am I spending a quarter of the phone call listening to someone else tell me their dreams?! (It feels so self-centred to be annoyed that someone isn’t focusing on me, and I have spent a lot of time trying to balance my innate desire to stay in the background and listen to people with the knowledge that for this to work, I need to be the centre of attention. It’s horrible and it’s so hard.)

But, after that, I changed therapist. I had a five-minute call with the second person; five minutes of broken connections, crackling lines, and awkward chat via the app; and then I gave up. Cancelled the service, and went and hugged my cat. I can’t afford it, both monetarily and emotionally; I can’t face starting over again with someone else, explaining everything AGAIN, paying money I don’t have for something that might not help…

My friend (who recommended the service) said they went through four therapists before they found their good one, and I get that – people aren’t always going to be compatible. But it’s just extra time and emotional energy on top of everything else. I might go back to it at some future point when I have some spare money, and try to find someone in the UK (for a hopefully better phone connection!)

*Called Lucien’s, for some reason – I can’t remember why I picked the name. I was trying to work out if I could do a lending service instead of a bookshop, because a coffee-shop-library sounds more fun than a bookshop, and means you can sit in the comfy chairs and read! A friend suggested adding cats, too, which is an excellent idea.

Employee Assistance Program

I got a tick on my “Mental Health Bingo Card” from this chat, at least: “Well, you sound fine.”

Yes. Yes, I do sound fine. That is because – like a lot of people who have to function in society with bad mental health, because otherwise we can’t buy food or pay rent and it’s perfectly clear that the damn Tory Government doesn’t give a fuck about helping, so don’t expect any social assistance if for some reason you can’t function in a job, and if you don’t have a pile of savings or for some reason don’t want to live off your parents when you’re trying to be an independent adult – I am very, very good at pretending to be fine.

And if I say I am not fine, it’s because I am most definitely. Not. Fine.

This chat line was via Rebellion, and was offered as a multi-problem service (they can help with debt, family issues, mental health, etc.) You could ring a helpline and get put through to your service of choice! Yay. So I rang one evening when I was feeling moderately ok but definitely not Well, and thought I’d see what they had to say.

Not much, as it turned out. I got sympathised with, but told that I “need to have a problem to solve” – apparently “being depressed” is not a specific enough problem. I’ll actually accept that as a somewhat fair thing, though, because they’re only able to offer six counselling sessions (which is a rant all by itself, because of course six sessions is enough to cure any problems!) and I can see that having an end goal in mind for that would be beneficial. My issue, of course, is that if I knew what my problem was, I’d be trying to solve it myself… and I’m asking for external help because I don’t know what the problem is…

My particular Person At The End Of The Phone was, however, also very fond of the sound of their own voice, so I think I got ten minutes of talking versus their twenty. It’s always fun when you phone someone for help and they spend more time telling you how they think you feel, rather than actually, y’know, asking you. (And then maybe letting you tell them? That’d be good too.)

All in all, an incredibly frustrating experience – but hey, I can “call anytime!” For more of the same? No, thanks. Hard pass.

(I did pass my experience and thoughts on to our work HR, though, so at least they have one black mark against them if HR do decide to look into alternatives.)

Psychological Therapies

Speaking of frustrating, my brush with NHS Psychological Therapies was… also fun.

I was referred to them via TalkingSpace, with the aim of trying something – and I’m up for that, because at this stage I don’t know what will help. I can’t remember the name of the therapy it was supposed to be, which is annoying, but it was basically to do with examining your emotions as they happen (which I have only figured out afterwards, when trying to analyse the appointment.)

The therapist was nice, but the first consultation was an assessment, and she… just tried to get me to talk. “What would you like to talk about?” she asked.

I. Don’t. Know.

I did point out that I could spend an hour talking about the print production process for fiction books, and could she give me some pointers on what would be most useful for her? (She did start asking some slightly more useful questions after that.)

She also, infuriatingly, would ask close-ended questions. “That must have been frustrating for you.” Yes, it was. And? Do you want more information? If so, what aspect would you like more information on?!

I was actually getting fairly angry towards the end of the second session, because she simply wouldn’t tell me what she needed from me: the first session was assessment, yes, and she suggested a therapy. Ok, great, I’m up for trying that! The second session… I couldn’t understand if it was the actual therapy, or still assessment, and if she needed more or less detail on situations, or what she actually wanted me to talk about… she’d had a “yes, I’ll try it” from me, so – did she need more information? Another yes? What was I supposed to be doing?

What it boiled down to, I eventually discovered, was that she was trying to get me to display my emotions.

So, let’s summarise the problems with this.

  1. I try not to display emotions in a professional or meeting setting, because that IS NOT THE TIME;
  2. I have spent YEARS making sure that I am able to be professional and calm and collected in front of other people even when I feel terrible, because randomly crying on someone is not helpful, and is often actively unhelpful (especially if you’re a woman, and double especially if you’re a woman in a professional setting);
  3. I was deliberately trying not to display my emotions because, silly me, I’d assumed that she was actually wanting to talk to me, and spending half the session in floods of tears doesn’t seem like a good use of anyone’s time;
  4. And most importantly, I am not going to cry in front of someone that I have met for an hour, via Zoom, and frankly don’t like very much.

But apparently I am not suitable for that type of therapy because – I am summarising here – I can’t cry on demand.

It’s just another bundle of straw on the ever-growing pile of fury at mental health help, really. I’m not doing it right. I’m not saying the right things. I’m not feeling the right way. I’m not Being Depressed in the Correct Way. I just Don’t Understand and needed to somehow do the right things, despite not being psychic and knowing what the right things were? Asking gave me a black mark, too, as apparently I needed to be led, and needed the right answers to be pointed out? Or something like that. I don’t know.

Anyway, fuck that particular therapy.

And now?

Thankfully the NHS therapist was quite happy to refer me back to TalkingSpace (I caught a definite whiff of “Getting rid of a potential problem client that Won’t Do What I Need Them To Do For This Therapy”) and TalkingSpace have said they’ll refer me on to a traditional counselling service, as they think that just talking to someone might be helpful.

I might have rolled my eyes quite hard at that, because that’s what I’ve been asking for all along. But hey ho, they’ve got a Checklist, and it looks like I’ve now reached the point where I might be getting useful things.

In short: I have been through various therapies, and have got no further forward, and a lot more pissed off. Yay for mental health help!

(The counter to all of my frustration, and the only thing keeping me sane, is that it is so hard. With a broken leg, at least you can do an X-ray and see how it broke and how to mend it and if it’s healing. With mental health, it’s an ongoing process, changes day-to-day, depends on the person, and depends on so many other random factors that I sometimes wonder how on earth our salty lump of bacon even pilots our fleshy meat sack without doing a Windows Update every ten seconds. So anyone trying to work with someone else’s mental health is hugely impressive, as trying to figure out my own has been hard enough.)

My current strategies?

  • Quit the job that was causing a lot of stress
  • Hug my cat
  • Make cake
  • Eat cake
  • Writing? I’m currently enjoying working on No Man’s Land/Every Ghostly Scar, plus I’ve had a few other odd bits floating around. So progress!

 

 

A mini Kate Update – February 2020

You may have noticed that I’ve been a bit quiet – sorry! I’m currently off work for two weeks (well, a week now) as my medication is kicking my butt; I hate being off work but the doctor suggested it as the one stress we could remove, just to see if everything settles down. The medication is working, which is good; I mean, not having feels isn’t great but it’s better than having too many. The problem is that it’s currently letting the weasels have free reign, and I’m having trouble shouting them down constantly. A week of sleep has helped a little (I’m also ridiculously tired, struggling to get out of bed, finding sitting upright hard… all the usual fun) so I’m hoping another week of sleep will help, and then getting back into the routine of work.

A gardener chasing after a goose that has stolen his radioI’m pretty much out of options so I’m keeping on this course; I know the first six months are the hardest, and I’m fighting something that’s been entrenching itself over the past fifteen years. The rest of my life stresses have mostly got better and I’ve been able to haul the growing depressions out, so it’s just the roots I’ve got to dig out now! I hope, anyway. Gonna keep going. Gotta keep going. That’s pretty much it.

There are a few rays of light; I had an idea for a game, and as Otter has been creating a simple little detective game, I had a chat to them about the possibilities of actually learning to make it. I’ve also managed to read a little, even if it is books I’ve read before. I’m also managing to Cope With Occasional People, and my foot got sniffed by a very snooty cat, so that’s progress. I’m also being aided in The Fortnight of Rest by Blue Planet 2, shortbread, amazing friends and terrible memes, so that’s all helpful… I haven’t really had the focus for reading or playing computer games, although Otter did turn into a Horrible Goose earlier in the week, which was hilarious. (It’s an amazing game and if you haven’t played it, you should.)

Beyond that – I’m just keeping going, and taking each day as it comes!

Mini Kate update

I’ve been on anti-depressants for about six weeks now, and they’re definitely working – happy! Baking! Singing! Stuff!

But this last week has reminded me that it’s only six weeks, and brain chemistry often doesn’t work that fast… I have all the energy and want to do all the things but actually, I’m still really tired. I’m lacking motivation. I’m struggling to turn my brain off, and when I have a moment to just try to relax, the underlying anxiety makes me restless.

(As a side note, my partner did comment on my habit of always needing to do something, and wondered where that came from. I told them it would probably take a therapist to untangle that knot!)

From what I remember, the six months after starting anti-depressants are often the most dangerous – you’ve got the energy and feel better, but the underlying thoughts haven’t yet sorted themselves out. I’m not suicidal (thank goodness) but I do kinda understand where that danger is coming from – I’m feeling better, but also still bad. It’s a weird combination.

I have been baking; haven’t been reading. Have been getting out a bit more; haven’t been sleeping well. Have had more energy and felt up to tidying and people; have also crashed badly afterwards. I still find it hard to settle, even if I’m also playing games because my mind just won’t focus. It’s made work a bit more difficult but at least I can multi-task there, whereas I often find that difficult at home.

But (but!) I am coping better. We had a hectic and chaotic day at work last week where everything went wrong, and I was ok. I had a very stressful day yesterday with family, and I was ok. So that’s been good, if weird. (It’s a very odd feeling of wanting to cry to release stress, but not being able to. Yay drugs!)

So, overall: doing better. I need to keep remembering that I’m not well, keep conserving energy, and try not to overspend my spoons even though they’re better quality spoons.

Also, it’s Christmas soon! Wheee! I can sing carols round the house! (It’s ok, work people, I’m not going to be singing them round the office. I’m not that cruel.)

Thinking About Trauma

Trigger warnings for… I’m not sure what. Trauma, miscarriage, mental health? It’s a bit of a jumble of thoughts, really.

So I trundled off up to the hospital yesterday for some random tests (I’m fine, it’s only minor stuff) and I’ve been given some medication. As part of this, I was Strongly Warned that I shouldn’t be taking it while pregnant. Hah, no, no plans to get pregnant. And that was…ok. I felt fine with it.  It didn’t feel weird to say or think; it was just a Thing. I’m not planning on having children, and that’s ok.

And the nice thing, I realised afterwards, is that the doctor actually listened to me. At no point did anyone try to change my mind, disagree, tell me that I’d want children eventually, disapprove… considering there’s a lot of stories of women whose medical advisors don’t listen to them – particularly when it comes to not wanting children! – I’m incredibly grateful for the empathy and understanding that I get from most of the medical professionals that I’ve interacted with. (I make an exception for one doctor, but I try to be charitable and assume things got lost in translation with them.)

I also had to mention the miscarriages, and that was actually kinda weird. The doctor’s reaction was sympathy, and I can understand that – it’s a shitty thing to happen to anyone, and if anyone told me that they’d had the same experience, I’d be entirely sympathetic. But actually, I’m ok with it. I’m not particularly sad, or traumatised, or… whatever I should be feeling. It sucked at the time, but I think sort of expecting it to happen helped soften the blows. It’s crap to have one miscarriage, let alone three, but it’s not as big a deal as it could have been. Which isn’t to say that it’s not for other people, and it shouldn’t be treated as such: miscarriages fucking suck balls, particularly after 12 weeks. I’m just saying that I think I’ve come to terms with mine – which is good, I think. A little worrying, maybe? I wonder if I’ve repressed it or something, especially as I’ve been feeling grey for a while. But I don’t really know how you find out if you’re repressing stuff (especially as I’m ok talking about it) so… I guess I just don’t worry about it too much?

It’s fairly easy to figure out when you’re not dealing well with something. I don’t really know how you figure out if you are dealing well with it, beyond it… not really being a problem.

Anyhow.

I’m also incredibly grateful for the NHS. I trogged around four different departments and it cost me £9 plus a bus fare – and that’s for two blood tests (same arm – I was GRUMPY), a batch of about six other tests, a chat with two doctors and a nurse, a pile of pills and the promise of check-ups. All for less than £15!

I was also very grateful to not be blown off about any of the problems I asked people about. It’s reassuring to be listened to and given solutions, particularly when for most of my life the solution has been “oh, you’ll grow out of it” or “GENERIC PILLS” or one of a list of standard things that I’ve tried and haven’t helped. So that was nice.

My work also rock; I got in and, in the words of Otter, looked a “bit grey”. (I took that to mean “have you seriously just walked out of one of our Zombie games?!”) David got me tea, the Boss told me to drink it, and I got to just chill for a bit until I was less shaky. It’s really nice to just have my limitations accepted! (And be fed tea on request.)

Also, I got a red bean bun from Rachel’s as a treat for not fainting during the blood draws. GO ME! (Also also: it’s still a point of serious pissed-off-ness that I’m not allowed to give blood because I faint. Like, seriously?!)

So, there we go: a Kate ramble of thoughts and weirdness for today.