I’d like to say my absence was because I skipped off into the sunset along with a magical cure for everything that ailed me but that would be A Lie. Things have been a bit bollocks for me and R, who now has her own MI diagnosis but I’m not disclosing it because I’m not her. Neither of us are working and we’re not really looking after ourselves all that well at the moment either. Just getting dressed and having a meal is like this epic task. Oh well.

I have an appointment with an endocrine surgeon at the end of Feb because my thyroid is still shit and might have a nodule or something on it and my endocrinologist kept emailing me to ask if I’d made a date for surgery yet. Because my eyes have been pretty fucked for the past two months, I was ok with the idea of the thyroid being chopped out right up to the point where I realised this would involve people cutting my throat open whilst I was unconscious.

D:

And then I saw pictures of the procedure.

D:

And then I read about the complications.

D:

Eyes be damned, I would probably risk them getting worse and go with RAI after all if it weren’t for the possible nodule and the pesky paranoia about people poisoning me. I dnw to take a pill that is radioactive. IT IS POISON FFS. But I dnw to have someone SLIT MY THROAT either.

My mood is kind of shit partly because of surgery stress and maybe partly because I went up to 100mg Pristiq before Christmas. I don’t think I do well on high doses of antidepressants, especially as I’m not using the seroquel any more. It’s not just depression either it’s this ruthless desire for organisation and control that keeps me up until wtf o’clock working on this or that and when things do not go as planned or deviate slightly from my insane schedule I go a bit peculiar.

It is p embarrassing when your partner asks you if you’re planning on doing anything rash. Embarrassing and awkward because well I WAS THINKING ABOUT IT ACTUALLY but I guess I WON’T NOW I mean jeez I’m way too fucking lazy and it’s way too hot to disguise anything effectively anyway also idek where R keeps the special acid she had to get an ABN to buy, ok! (That last bit was a joke, R. I know you will be reading this so. IT IS FUNNY. LAUGH.)

But my temper is fucking horrible at the moment and I have so many vile thoughts. That I don’t plan on sharing with anyone because they just make me sound nuts.

I have been thinking about biting the bullet and seeing a therapist to get the anxiety (that sounds a lot tamer than what it actually is) and weird thoughts and stuff pinned down and labeled once and for all (because I hate having nebulous issues, I want to know exactly what is going on) but I can’t shake the association of therapy with middle class Americans who need help to ~process their feelings~ about scratches on the bodywork of their new cars. I actually get filled with rage when I think about it in this strange way. I’m not sure if it’s class-related but I think in part it might be. I hear about younger people getting access to various services and diagnoses and THAT WASN’T EVEN THOUGHT OF where I grew up. It is like hearing about people who live on a different fucking planet and I am filled with rage and contempt and a kind of envy because uh, maybe I wouldn’t be a 28 year old failure if someone had done something when I was 12 or 13, who knows?

Of course that being said there was a 2 year wait list for CBT when I was 17 so fat fucking chance of ever actually getting help even if they do notice something’s not right.

This is turning into a disjointed rant but i don’t care – it’s nearly 6am and I should be asleep.

I never told anyone about the worst things (I’ve only touched upon them here, actually, and with the exception of the post about J I’ve been quite vague, I think) but that was how I was raised tbh. It didn’t even occur to me to complain about them which is pretty fucked up. I do whine a lot here but for the most part my life just reminds me of that stupid story about the Spartan boy with the fox.

(A digression: “If you can’t tell your psychiatrist, who can you tell?” asked Dr K a few months ago. Which is a good point but I still didn’t tell him what I was obsessing about because it was pretty fucked. Thank fuck that particular anxiety has receded because it was disgusting. At least now my unpleasant thoughts aren’t quite so horrible. I haven’t told him about school, the people down the road, or J either, mostly because it’s humiliating but partly because it’ll be a one way trip to BPD and I really don’t identify with that at all. Nine years ago, yes, but not now.)

My parents and schoolteachers may have failed to follow up on certain warning signs (and by may I mean they actually definitely did fail to follow up on certain things). This is not a criticism of my parents, however, if you say anything bad about them I will finish you.

The schoolteachers on the other hand should probably have chosen different careers, like prison guards or something where they could display their sensitive sides.

Oh yeah I also have issues with therapy because the word revolts me (it’s so… touchyfeely) and because I had pretty unimpressive experiences with the counsellors at university. When I say I sometimes envy my sister because she has no MI difficulties, I don’t need you to start trying to find some kind of proof that she DOES have MI difficulties after all. SHE DOESN’T. SHE CAN WALK INTO A ROOM OF PEOPLE WITHOUT PANICKING. SHE HAS NO MI PROBLEMS. Just because she got colds and stuff all the time doesn’t mean she’s got ~anxiety~ problems too and for fuck’s sake can we talk about the fact that people are plotting against me now and I’m considering drowning myself or are you still busy being an invalidating shitbag?

Bitterness will out, oops. But anyway I don’t think university counsellors are cut out to do more than go ‘there there, maybe try writing your essay a bit sooner next time’.

Oh god I can’t remember where I was going with this. I really should start taking seroquel at night again because I haven’t slept properly for a while and I hate hate hate having my sleep patterns disrupted.

Anyway R’s therapist sounds quite nice and helpful and I don’t have the whole mixed-rage-and-contempt-and-jealousy with R because she knows exactly what I mean when I talk about resenting people with therapists and has her own reasons which I’ll not detail here.

I think living with me has made her mental. :/

posted by jeneli

no big deal

i’ll just stay out of the sun i guess

anyway my adventures with time continue. i confess i have been deliberately tempting fate by listening

to the right songs,

in the right order, 

at the right time of day.

If you don’t sleep and don’t eat for long enough there is absolutely nothing anchoring you to the present, did you know that? you can slip back and find yourself 

right there. your body becomes transparent.

although i just had a bowl of glass noodles with soy sauce so there’s nothing to worry about there. the ties that bind me here are really tasty. i fucking love food. all of it. especially soy sauce.

back to the subject of timetravel: where will you end up? in the 90s, maybe. there are still a few things you can remember from that decade as you haven’t tried hard enough to forget. it’s more likely to be the 2000s, though, and more than anything it’s likely to be 2002 or 2003 as those dates have been preying on my mind of late.

rather perversely i have a kind of nostalgia for the most awful times
in my life and the most destructive people in it, which is kind of embarrassing to admit. i sometimes dream about it and everything’s ok. i realise this is just a defence mechanism and my brain is trying to protect me, but it’s still shameful. i look at pictures of university and the city and get this hollow breathless feeling where i can’t quite relate the events that happened to the pictures in front of me, it was all a dream and nothing was real, i will wake up tomorrow in front of my cd player covered in blood on my second day at uni and i will get to start again and it’s horrifying and dizzying and you have to look away.

it’s been nearly ten years, which is so much longer than i thought i’d live. the memories accumulate and club you senseless when you least expect it. how do you cope when you get older and gather more memories? even though i’ve forgotten a lot there are still too many memories. so many that sometimes i just can’t breathe at the thoughts of all the lives i have lived and the people i have been. do you know how many times i just upped and dropped people without a word? how many personalities i have discarded like odd socks. i fool myself into thinking i live in a timeless bubble here with r and the cats but the world goes on outside us and people deteriorate and age and die

this is the most consistent i have ever been

i sometimes feel like i have smothered myself or lobotomized myself

still, i am happy except when i’m not, and when i am not happy i should be happy, and sometimes i feel guilty for being happy because i miss feeling things with the intensity that i did when i was younger, however i do know that is just bad thinking, the intensity hasn’t gone anywhere it has just matured, it just doesn’t always feel that way

and sometimes i feel guilty for being a generally contented chubby fuck with a nice home life and no interpersonal strife because now i have responsibilities and commitments and i had a bit more leeway as a teenager when a certain amount of mentalness is acceptable at least, but you can’t be self-indulgent at my age, you HAVE to take your medication and you HAVE to sleep properly and you CANT experiment with godliness or timetravel because it all goes to shit

so in conclusion: take your pills and go the fuck to sleep

I’m a little reluctant to write here because I don’t want to go back to overanalyzing every shift and flunctuation in mood. Ultimately it’s not too healthy. I also feel like this journal is a bit too exposed. But if I don’t write things down I forget them, and I did get a lot of use out of keeping this journal last year. It also helps others (R) keep track of things.

My sacroiliac problem has flared up again, and the most the doctors can say is that it’s some kind of inflammation of the sacroiliac joint. Arthritis. I don’t know. Anyway, I’ve shifted to using a wheelchair part-time – for any journey outside the house that requires more standing/walking around than getting into a taxi and out at the other end. I’ve used it around the shops in the city centre, by the seaside yesterday, and around various supermarkets. It’s a bit rough on the shoulders, but a lot better for everything else. I should probably have done this last year. I wish my house and street were more accessible. I am trying to get into the habit of going out once a week, because the house is nice and all but being cooped up gets frustrating.

Here is the wheelchair. Her name is Ermyntrude and she is lovely.

Mentally, things have been a little… off since my parents went back to the UK and have been slowly deteriorating since. Life events haven’t helped. A family friend died of lung cancer last week. I’d been thinking about him a lot and it came as a shock, even though I hadn’t seen him for about five years.

I’ve been having some problems with time and the reality of the present and the past lately. I wrote this about a week ago, which explains it fairly well I think.

lately i’ve been more convinced than ever of the elasticity of time. it seems thinner in places than in others, and it occurred to me that if you position yourself exactly in the right spot you could somehow slip through time itself and find yourself where you were eight, nine, ten years ago.

i became increasingly wary about this because of the possibility that you might slip through time without even meaning to. like, if you catch yourself in the same mood or listening to the same music that you listened to a long time ago, you’re putting yourself in danger of slipping backwards in the stream. i started to worry that in actuality all this was fake, or a dream, and that i wasn’t separated from the past-me at all, and very soon i would snap out of this. i think now that that was me getting very close to slipping out of the present, which is actually quite dangerous.

the only way to guard against this is to keep yourself as grounded as possible in the here and now, and there are lots of tiny ways you can do that: small, repetitive things that don’t require much brain activity (because the power of thought is what really brings you close to the danger points, every time you hear something evocative or smell something evocative you’re closer to one of the thinner points in the stream).

But since then anxiety has become a bigger problem than time. I’ve had some horrible intrusive thoughts trying to convince me I’d done something awful (no details, sorry), and it’s been quite difficult to stop fucking obsessing over it. I tried all sorts of things, including going back on Seroquel in the evenings to try and calm things down. I did also consider going to hand myself into the police at one point but fortunately I can’t really get out of the house that well ha ha. I am doing all sorts of little repetitive things like playing spider solitaire or painting my nails ten times a day in order to stop thinking about the big thing, and I’ve also done stuff that’s a little more ~self-destructive. O so coy.

I don’t really want to say any of this to the psychiatrist. Or to anyone at all, really. Perhaps that’s another reason I’m writing this here. It lets people know without me having to tell them. Perhaps I could just post this entry to the psychiatrist and stay in bed instead?

posted by jeneli

There’s still no way I’m going anywhere near DBT, despite my psychiatrist’s occasional attempts to sign me up for it. Perhaps my vision is just coloured by all the horror stories I’ve heard about needy and guilt-tripping DBT practitioners. By which I mean the therapists, not the patients.

Or maybe I just don’t have BPD even though I’m female! Now isn’t that a newsworthy concept?

I want to get dressed. I want to go outside, into the sunshine, and be by the sea. I want to do some writing. Instead I sleep 16 hours a day and can’t stay upright in bed for more than a few hours without feeling sick and shaky. I feel bleak. I have done for a while. I want to be able to focus on other people, on R, instead of my own stupid little problems.

This isn’t life. This isn’t living.

My parents are coming to visit next month and I need to be better by then. I need to be able to get up and do things and not throw up or collapse. They have no idea what things are like for me right now, and to be honest they think it’s a case of just being tired all the time, and it’s too awkward and embarrassing to try and explain what my days are like over Skype. I only told my mother about the possible ME thing a few weeks ago, and it’s been on my chart since November/December. Anyway, I just don’t want to be like this when they’re here.

And I want to be able to feed myself properly without relying on R. I have lots of microwaveable meals that don’t require preparation, just a clean bowl and cutlery, but there are times when I can’t even do that. Last night I was so hungry I sat on the kitchen chair and ate salmon out of a tin with one of the cats watching greedily. It was the first time I’d been in the kitchen in a while–I’m actually not sure how long. I’m supposed to be a vegetarian but I kept hearing things about fish oils being good for you, and so. Fuck knows I need to get as much nutrients as possible, what with the old vitamin D and iron deficiencies. And so.

It’s one step up from eating catfood, really, especially as I was in my dressing gown and don’t remember the last time I got dressed. At least I got to ~bond~ with my cat. And yeah, I did give him a bit of salmon. We banqueted together.

I can guess what would happen to me if I were single, you know. I remember how bad I was at taking care of myself at university. How I didn’t eat for days and lived off cigarettes and slowly fell to pieces in the dark. Even now I don’t handle things like bills or paperwork or foodshopping. I don’t know how much is in our bank account and it is best for me not to know, because I use it as a hammer and beat myself with it. Even when it’s not bad.

I never could look after myself, and if I had to take care of myself now, I would probably end up being the catfood. I swear, sometimes the cats get a particular glint in their eyes when they’re running low on food. One day my strength will fail me as I totter down the messay hallway to their bowls, I’ll go crashing to the floor, and then…

Well. I’m sure they’ll have the decency to wait until I’m properly dead before they begin their feasting. May they get much nourishment out of me. There’s certainly a lot more meat on my bones than there used to be, now that I have R to feed me.

posted by jeneli

I hate this.

29th May: Went to (location) using rollator and was able to take train there and back.
Rollator more supportive than cane although assistance required w/it getting onto and off train and with some bumpy areas like level crossing. Mobility issues – pain in hip, severe tiredness on way back.

1st June: required stick to walk from bedroom to bathroom in evening. Difficulty sleeping, eczema flare.

2nd June: Difficulty sleeping. Able to get around house (ie trips to bathroom) without stick, but obviously stiff & in pain.

3rd June: forced to get up at 8.15 for fasting bloodtest. Went there and back by taxi, had to sleep after returning home.

4th June: Slept a great deal, stiffness and soreness.

5th June: slept for 16+ hours. when coming back from kitchen almost fell over due to general shakiness. Sleep difficulty despite exhaustion.

6th June: extremely shaky and nauseous in taxi on way to endocrinologist. when returned home had to rest in bed for 4 hours. took rollator for brief trip into town to get passport photos – extremely tired/wrecked by time we left town. went to bed immediately. severe pain by time we were ready to leave town, feeling every bump in hands through rollator.

7th june: still shattered from 2x trips out yesterday. awake for 2-3 hours before needing to rest. could not get up. napped 4-5 hours. joint pain in hands (severe) poss related to rollator.

Unfortunately we haven’t kept written records of things since the 7th june but it’s safe to say things haven’t been any better. I sleep a lot and hurt a lot and my neck has been spasming a lot as well, as badly as it did last year.

I also have the flu. Highlights of the past few days include sleeping 19 hours, vomiting from pain and muscle spasms, and being an all-round snotbag.

I wanted to write about what it’s like using the rollator (pretty helpful for the most part, but there are times I would still rather have a wheelchair) but I just don’t have the energy, mental or physical. Words are hard right now.

Basically I feel dreadful, have done for quite some time, and although I know there was a time when I didn’t, I don’t remember what that felt like. I realise this post is pretty whiny but better out than in, okay?

posted by jeneli

But I’m hopping mad at my former endocrinologist so I thought I’d rant about this here as well as everywhere else. Basically I fired her a few months ago because she was a creepy so & so who liked making comments about people’s weight and I was kind of scared of her. After I left, her former receptionist told me that she was also an unscrupulous toad who double charged various patients according to their ethnicity, and failed to diagnose other–very sick–patients until they finally moved elsewhere.

Apart from my personal dislike of her I thought she was at least a competent endocrinologist, but as it turns out she failed to diagnose me with a severe vit D deficiency. In fact she failed to bother testing for it at all, despite my complaints of swollen joints and muscle pains and so forth. Despite vitamin D problems being incredibly fucking common in people like me. Despite me already having calcium and iron issues. Now my vitamin D is so low it’s at levels associated with rickets in children and osteomalacia in adults. (I also appear to have secondary hyperparathyroidism as a result of this – not sure yet as I need to speak to the new doctor.)

I doubt it’s the cause of all my ailments but it would be nice if it had been detected and treated, oh, several years ago maybe? Then everything else might be a bit more bearable.

What a useless fucking woman.

In other news, it looks like I’ll be getting a thyroidectomy sometime this year. The new endocrinologist thinks it’s a better option for me than RAI as it doesn’t involve as much faffing about with dosages afterwards, and I’m inclined to agree. Also I don’t want to risk going popeyed. I’ll be talking to my GP about possible surgeons on Thursday and am contemplating getting the operation done around October or thereabouts. Being on levothyroxine will probably be a lot easier on the body than being on PTU, so.

R isn’t well either. It feels a bit rude to disclose her medical info here without permission, so I won’t go into any detail about that. It’s not life-threatening or anything but it’s still something she could do without, poor lamby.

As for me, well. CFS is a fucking boring illness, you know. There are no glamorous anecdotes about it. You will never read someone’s wild and tragic memoir about it because it is truly that fucking boring. I made it out of the house for some blood tests last week and then promptly slept for the next day. I live life on the edge occasionally and go out for a slice of spinach and feta pie from the organic cafe. (My rollator, by the way, is fucking amazing and so much better than the walking stick for supporting me.) I spend the rest of my time sitting up in bed, or lying down in bed.

Mum said it must be incredibly frustrating, having to spend so much time resting and never being able to do stuff. In a way it is, but to be honest — I find being physically ill preferable to being mentally ill. I’m almost glad I’m too wrecked to go out and do things, because it means I don’t end up setting off my anxiety and social phobia. Sometimes being physically ill is a fucking blessing. Obviously this isn’t true for everyone, but generally people tend to get physical illness in a way that they don’t get mentalism. I’m a lot more stable now that I spend my time housebound with as little contact with people as possible.

R worries about me still, because of things that happened last year, and I wish I could change that. Not just because I feel guilty about putting her through the wringer, but because I’m better than I used to be thanks to the lithium. There is less cause for concern. She will not get home from work to find out that I’m actually at the hospital. I find it hard to believe that was real and actually happened, but it did. (I am better at forgetting things than R is. It’s kind of a perk of madness; who wants to remember how bad things could be?)

But like I said, I’m a lot better than I used to be. Things aren’t as dire as they were at the end of 2009, for example. Lithium means I haven’t had anything remotely resembling hypomania or mania since last year. Sometimes I regret that because depression is boring as fuck–but then I remember what it was like to be jumping out of my own skin, and I don’t regret it at all. Staying away from wordpress has also helped. I don’t think it’s healthy for me to do too much navelgazing, or obsessively analyse every single mood.

I’m also better at self-soothing, as wanky as that sounds. I think I’ve only self-harmed with razors once or twice this year. I can’t remember if I’ve done any other form of SI but probably not. I think? My memory’s shite. I’ve wanted to, anyway. Lots and lots.) Fighting the urge is a bit like trying to ride out the craving for a cigarette. I suppose they’re both addictions in a way. I’ve become a pro at Freecell, because it’s distracting and undemanding, which is exactly what I need to ride out the storm.

It would be nice if the storm didn’t happen in the first place, but I guess we can’t have everything.

I’ve also had trouble with anxiety and being too tired to sleep properly, so I’ve decided to start taking Seroquel again as it does bad things to my body when I don’t get enough sleep. My sleep has been fucked for a while, hence my being awake and writing this at 5am whilst listening to Janelle Monae (<3). This is the most rock n roll I've been in a while, folks.

Anyway I need to rest because I'm seeing the new endocrinologist in a couple of hours. Could do without it today, but there you go.

posted by jeneli