bitsa this, bitsa that

i had to get tested for lupus again but ~no action required~ with the results, i guess they’ll be saying that even after i drop dead but oh well

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

been a long time

It’s been a while. A few things happened – my parents came to visit and I had a lovely three weeks visiting places and swimming in the sea, almost like a normal person apart from the mobility aids and copious amounts of drugs.

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.

In the news: Marsha Linehan and DBT

I’ve just been reading this article about Marsha Linehan’s experience with the psychiatric system in the 1960s, and how that inspired her to develop dialectical behaviour therapy.

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?

sick of me

I’m so fucking sick of myself.

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

awake

I feel uneasy, and if I’m honest, a little frightened. Scared.

I hate this.

For my own reference

Just typing up some of R’s observations about my daily physical issues. Thought it would be handy to have them here as opposed to floating around on a piece of paper that will no doubt be ripped to shreds by a cat in the near future.

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

There is no way I have rickets

Two posts in one day. I know. No-one can live at this speed. And yet.

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.

Halfway through the year already?

It’s hard to write, much as I’d like to. Things haven’t been that great, physically or mentally if I’m honest. I have had to summon up great courage just to check my emails, dreading anything that make make demands upon my time, failing to answer texts from friends, and as for google reader – fuck it. I haven’t been particularly active on wordpress, either sorry. I haven’t been replying to comments either, because I feel a bit intimidated and get tired every time I think about it, and I’m sorry for that too. Sorry, sorry, sorry. Great way to start a post!

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

quick hit: running up that hill

I found this post about ME/FMS on tumblr and thought I’d share it here as well. Tumblr is a pretty awful website, to be honest, but that post pretty much sums up my current state.

And that’s all for now.

crawling out from under my rock

I’ve been neglecting this place, I know. Sometimes I find being here overwhelming, and reading about mental health particularly so. I haven’t really been commenting or reading anyone’s blogs for that reason, I’m sorry.

Here’s a brief update, anyway.

I’ve been increasingly down for a while and had an interesting mental ~episode a few days ago that I can’t really call anything but borderline, I guess. It wasn’t pleasant but I got through it. My coping mechanisms weren’t the most healthy (hello mild SI) but I stayed safe and didn’t burn any bridges with the people who helped set the whole thing off.

Not sure if I’ve mentioned this here but I’ve fired my old endocrinologist and got myself a nice new one. I know I complained about the old endocrinologist making shitty remarks about my weight, but I’ve since learned that she:

1) told a very sick patient he was completely fine for over a year, whilst double charging him for appointments because was rich

2) double charged other patients for appointments because they were Indian

3) bullied her lovely receptionist and fired her without pay.

The lovely receptionist is now working for my new endo, and quite a few patients have flocked to join her. Including me, obviously.

Unfortunately at the new endocrinologist’s we realised I’m still not responding properly to the PTU and because it will eventually damage my liver if I keep on it, I’m going to have to choose between RAI and surgery in the near future. I knew I’d have to eventually, I just… hate the thought of doing something irrevocable.

And I’m still not back at work. This in itself depresses me. I don’t know when I’ll feel well enough to work a full day, and part of me feels like I’m just a fraud anyway. I don’t know what to do about it to be honest. I can’t keep burying my head in the sand, but if I think about my situation or think about nice people at work I just find myself wanting to jump off a bridge.

So that’s that.