Fever

Saw my GP first thing yesterday. More antibiotics, more steroids, go back on Tuesday. Today I've been pukey and feverish and generally unpleasant. I've been trying to write this post in chunks during the day, so hopefully it's somewhat cohesive.

My fever was in the 39°s for a few hours today, reaching 39.7°c, which I don't think I've experienced before. Mum and brother started saying I'd need to go to A&E if it gets to 40°c, even if they have to call an ambulance. I thought it was a bit of an overreaction and would rather just wait to see a GP if it got that high, but thankfully it started dropping a couple of hours ago. 

Mum's asked a couple of times already if I think the Gabapentin's having a negative effect on me, as in making me more depressed, but I honestly don't know. I get that she's still on-alert from the Fluoxetine-OD incident, which is fair enough, but how would I even know? How could I tell the difference between Gabapentin making things worse, depression just getting worse on it's own, or feeling worse because I have less hope? Even if I did, would I be able to say anything?

I'm crying for hours everyday again. But I think it's just that I feel less hopeful. After months of being told repeatedly that there's no point trying new antidepressants because Mirtazapine's the best I'll get, I feel like she just gave me these to shut me up. Whether that's true or not, my head has me convinced. 

"I think you really need to give them feedback on this."

"Why bother? She said she wants to leave me on it for two months before re-assessing."

And really, if I don't stay on them for at least those two months, they won't have any reason to give me anything else, because why bother if I won't even try?

On Wednesday and Thursday mum had to do a clear liquid fast for a routine procedure. I bet you can guess where this is going. I always struggle when I'm supposed to eat by myself. The bulk of my intake is liquid already, but things like smoothies, yogurt, Milo, soups, opposed to all clear liquids (definition below). But even with that, I'd feel so guilty having a hot Milo while mum has broth.

Needless to say my intake wasn't spectacular either day. On Wednesday I had a sugary icy pole (popsicle) (43 cal) after my blood sugars inevitably started to dip, plus 1.5 liters of diet soda (my trusty Coke Zero and my new obsession, sugar-free Sunkist), and of course water and a couple of black coffees. Thursday was harder because I knew I'd be having dinner. I asked mum what she wanted me to cook for dinner for when she got home, and as soon as I asked she said tacos.

We do tacos simply. I cook the chicken coated in dry seasoning with a little water, and gave them with salsa, lettuce and reduced fat cheddar. I had two with about 44 grams (raw weight) of chicken between them (226 cal) plus a hot Milo before bed (132), and during the day I had a little over two liters of diet soda.

Yesterday was a little higher, around 500 cals, and today will be closer to 650 after my Milo. I made a really simple Potato & Leek soup last night. I sautéed a leek, some celery and a few cloves of garlic in a little olive oil (10g for what made twelve cups of soup), then added the potato and chicken stock and puréed it all. No pictures, but it was so simple and tasty. 

Sorry I've not had much positive to say lately.

The tatters and rags skirt is coming along much more slowly than I expected, so I thought I'd share some progress pictures instead of posting them all at once when it's finished. There were some 200-odd individual scraps when I took these photos (yes, I'm counting), and there'll be around 600 by the time it's finished.

Now I'm going to go watch Frozen for the hundredth time because the songs makes me feel slightly less shitty for 102 minutes.

A scale model I made to see what the shape would
be like before I cut it out full-size

xxBella

Stuttering, Stumbling, Mumbling

When I saw my dietician this week, she spent some time talking about what improvements I've made in the time I've been seeing her. I started to panic that she was going to say I've made so much progress in terms of eating/weight/mood, when none of the above are true, but it wasn't like that at all.

Firstly, I make more eye contact now. I still stare at the floor for most of the appointment, but I can hold eye contact for more than a split second.
More than that, I can make conversation and talk and joke instead of just giving one-word answers.

And I don't run out crying anymore.
"That was only when I gained weight."
"But you don't do it anymore.
"The first time you ran out, I was like 'wait, what's going on here?'"
That would've been the fourth or fifth appointment, when the scales showed a gain for the first time.
"I don't have many clients who run out on me." she laughs.

I think it's because I'm much more comfortable around her now. I still struggle with the GP and mental health nurse and can't make eye contact or talk as freely, but I'm pretty comfortable with my dietician. But hey, even with just one person that's something.

I've been seeing her for over two years now, and I don't know if I'd be here without her. She's helped me get my intake to a level where I'm not constantly hypoglycemic, and for a while she helped me get my calories as high as 1,200-1,300 and still maintaining, which were both goals when I first met her, but I couldn't keep up with the higher calorie intake for long. She monitors my weight and tells me of weekly changes, and assures me she'll tell me if I start to gain or lose significant amounts. 

Anyway, then I saw the MH nurse for the first time in a month.

I didn't get to say my piece on meds. I know I need to talk to them about it, just to voice my feelings and clear the air, but I just couldn't talk.
One of the first things she asked was if my meds had changed, and I mumbled that I've started on Gabapentin. She said she hopes it helps with my anxiety, and I just sat there.

After a while of me giving one word answers, she asked what was going on in my head. I stuttered and stumbled and mumbled that I didn't know.
Eventually I started talking a bit more, slowly, hesitantly, stopping and starting. I didn't want to waste another appointment.

She asked me how I've been spending my days, and I just wanted to cry. Everything is just so hard. Sewing, blogging, writing in my journal, exercise, cooking, eating, gaming, tapestry. I can push myself to do things for a little while, but it's so forced, and everything just ends up stressing me out more. I don't want to do anything but I can't do nothing either.

It's not just that I feel overwhelmed by it all and it's not just that it all seems pointless, there's more to it than that. I spend most of the day staring at the wall. I can smoke and pick at my skin for hours on end, but I can't pick up my phone or write in my journal.
She asked what goes on in my head when I'm like that, if I'm "away with the fairies" or if my thoughts are running, but I honestly don't know. I try to identify it, but I just feel stuck.

I wish I was away with the fairies.

She asked if I was having any suicidal thoughts, and I sat there silently, thinking about what I should say before shrugging my shoulders.
"You don't want to talk about it?"
"No... I just... It's not that I'm suicidal, I just wish I was dead."
"Oh, okay. But that's different to saying you want to die?"
"No, I do want to die, I just don't have thoughts or plans to actively kill myself."
Call it a Passive Deathwish, or Anorexia's warpath.

"It's not acceptable for you to be this way. You can't go on like this."
Tears finally started leaking out. Not because she's probably right, but because it made me feel like an unacceptable fuck-up. I know she meant well. I marvel at my ability to take things the wrong way. But even now, I'm regretting not just keeping my mouth shut when the subject of mortality came up.

At one point we were talking about self-care. Admittedly I'm not the best at it. I don't think I really deserve it. I wear the same clothes for days, and bathing is even harder both mentally and physically (I'd be more embarrassed to admit it, but I know I'm not the only one). Since I struggle with those, she wants me to try doing some other things for self-care more often, whether it's listening to music (I don't anymore unless I'm exercising), painting my nails, or even just burning some candles or incense.

So yesterday I had a bath and burnt some incense, and then freshened up my hair color. I can't say it made me feel any better, but at least now I look half presentable.

In other news, last week I bought myself my first new pair of shoes (non-exercise shoes) in years. They are fabulous. Being so tall, I've constantly been told that most shoes are 'too tall' for me. But you know what? I. Don't. Care. I'm tired of not being able to wear 90% of shoes because of my height.
They have a 9cm (3.5") heel with a 1.8cm platform, making me 195cm or 6'4.5".

And thank you all for your comments on my last post. You guys are amazing. Sometimes I don't know if I'm being completely irrational and out of line or not, so I really appreciate the feedback and input.

For now, photos. 

xxBella

The Antidepressant Quest

The verdict is in on my quest for antidepressants. I saw my GP on Thursday, and she's started me on a new "antidepressant" called Gabapentin, more commonly known as Neurontin.

It's a medication for epilepsy, but it's usually prescribed for chronic pain, but recently it's been shown to help with anxiety too.
...I thought it was supposed to be, y'know, an antidepressant.

I just want a good old fashioned antidepressant. It's not like I've tried that many. This is the fifth or sixth, and all but two have been in the last 18 months. At least three have been relatively 'new' and not actual antidepressants (Zyban, the last one, was actually a smoking cessation aide). I feel like she's not taking me seriously. I feel like she only gave me Gabapentin to stop my complaining and begging.

I haven't told you guys this before, because it's kind of a long story and a long time ago, but I'll keep this brief and to-the-point (*potential TW for OD talk*). I had a bad overdose just before my 13th birthday, and ended up in the ICU for weeks in an induced coma. My first psychiatrist had put me on Fluoxetine about six months prior, and it made me even more depressed and suicidal than before. I never told anyone. No one knew, until mum found me on the lounge room floor having taken every single pill in the house, with my rambling that she wasn't real, that she was a hallucination, trying to somehow reassure myself. I barely made it through. After that, I refused to take any medication for years - especially antidepressants. I was put on them again at age 18 while sectioned, and by the time I could stop taking them I was too scared to.

But it feels like a bit of a kick in the teeth that when I finally do ask for antidepressants, I get told multiple times that nothing will help me, or given something for anxiety.

The OD is also relevant because when I was in the ICU, I apparently suffered from fits. I didn't know this detail until a few weeks ago. Anyway, technically it counts as a 'history of epilepsy', which means I can get Gabapentin, the epilepsy medication, at a reduced price on my pension. But that wouldn't be an issue in the first place if I was given something that, you know, is actually meant for depression.

Then she said "Oh, it helps with depression too", just as an offhanded comment. But honestly, I think she just said it to stop me complaining.

Apparently I shouldn't even bother looking for information online, because these studies are so brand fucking new that the internet isn't aware Gabapentin helps with depression yet. The psychiatrist only just heard about it at some conference in South Africa. I don't even know.

Part of me wants to not take it, just to say that I want something that'll actually help with depression, but I can't refuse something that could help with my anxiety.

I give up. I'm too tired to fight for new meds anymore. This better do something.

She wants to leave me on it for two months before making a decision either way. It's three times a day, even at a low dose. She warned me it can be quite sedating, so I could either start with one a day and build up slowly, or just start all three at once. I managed two yesterday, at breakfast and dinner, I'm about to have my third for today.

Google did tell me that it helps with restless legs syndrome. I've suffered from restless legs on a nightly basis for years now. I've never actually bothered to mention it to anyone because it hasn't been a priority, but I'll definitely talk to my GP about it next time I see her.

Anyway, my oxygen levels were still holding around 97%, but I still feel like shit. (Since a few people asked on my last post; my GP said normal oxygen levels are 99-100%) She doesn't want to keep me on prednisolone too long but she gave me another script for antibiotics. She thinks it'll take a few weeks for the cough and phlegm to clear, so we'll see how it goes.

I started feeling worse again yesterday. I got a killer headache on Thursday night, and still had it when I woke up. I had my first Gabapentin with breakfast, and by lunchtime couldn't keep my eyes open. I napped for an hour or so (which I never do), woke up, had a smoke, and threw up. My fever went up to 38*c again, and I threw up twice more that night. Nausea and coughing do not go well together.

My weight stayed exactly the same again this week, because I am, evidently, a wizard. My reaction to the dietician was "Whatever happened to 'weight fluctuates'?!". I don't often mention weekly weight changes, but this is something else entirely. I eat routinely and my weigh-day outfits always weigh within 100g of each other, so that'd contribute. I'd call it the Plateau from Hell, but I'm not going to complain as long as it doesn't end with a gain.

Apart from apointments, I haven't done much at all his week. Everything's just too much. There are too many things to sew and too many games to play and too many things to do, and I just... can't. I don't know how I'm supposed to balance everything. So I've done absolutely nothing for a few days now. I don't know what to do. I don't want to do anything. I just want to hibernate. I'm just lost.

I'm sorry this post is so long. I just can't seem to get my head together to post more often than once a week. I am simply not functioning.


xxBella

Update

I know I should've updated earlier in the week, sorry. I'm just so exhausted and writing posts seems to take so much energy. 

I'm trying to give myself a break on the 'shoulds' because I know I need to be taking it easy. I just want to lie comatose on the couch all day.

Anyway, I saw the GP and my oxygen sats had improved - as high as 96%, so that's good. 

The painkillers are helping and I don't think I've been as short of breath as I was last week, so for now I think I can avoid hospital, but it's just taking things day by day. She's still holding her breath, but it's an improvement.

I'm seeing her again next week but she said to call first thing in the morning if I need an appointment beforehand, or to go straight to private A&E if I take a nosedive. I think I'd always wait to see a GP first though, just to make sure I'm not overreacting or imagining it or anything. Even last time I was admitted to hospital, I'd half-convinced myself there was nothing really wrong until I saw my oxygen read below 80%.

It was kinda funny, she hadn't really noticed that my heart rate is always tachycardic, and it was diagnosed long before I met her. She was like "Hmm, your pulse is still over 110", and I told her it's usually around that. She asked if it was just high when I'm sick (meaning infections) and started looking back through my notes, and I told her it's been high since I developed Anorexia. She said "Oh, it's probably a dehydration response for you then", but these days I over-hydrate if anything, drinking between 3-6 liters a day.

Dietician was on Tuesday as always, and we were both slightly stunned; my weight had stayed exactly the same for three weeks running, with not even 0.1kg difference. I weigh my clothes to make sure it's consistent, so it's not just a coincidence. It's weird, but I guess it's less stressful than usual maintenance-fluctuations. Prednisolone always messes with my weight though, so the next few weeks' weights are to be taken with a grain of salt.

I know I need to accept that any more losses at this point will be slow and difficult. It sucks, but at least I'm not gaining.

I'm eating small but regularly. On an average day I'll have a little yoghurt for breakfast (26), a strawberry smoothie for lunch (120), an apple or a few digestive biscuits in the afternoon (50-95), and a hot Milo for supper (130).

Dinner is usually beef & veggie stew with toast (160) or rice with soy sauce (140), or if I feel up to it I'll join in a safe family dinner, something like stir-fry with rice or chicken with steamed potato and veggies (140-160). 

Even though it's a lot, it's not quite enough to keep my sugars in the normal range which sucks, so sometimes I need a little more, but I'm managing 500-800 cals most days. 

Next week I have three appointments in as many days; the dietician, the mental health nurse, the GP. I practically live there.

I don't have much more to say, so I'll leave you with some photos of my crappy sketches. I haven't felt up to actually sewing, so I've been doing some drawings and trying to figure out the 'tatters and rags' skirt pattern since I'm starting from scratch. Even though I've made these skirts twice before, it's been a 'make it up as you go along' kinda thing and I've never had a proper pattern, so this is the start of one.

Messing around with colored (black, white and gray) pencils

I'll stop boring you all to death now. 

xxBella

Cough, splutter, gag

So, my lungs are trying to kill me again. It's come on really quickly, but since it's been caught early, hopefully I can avoid hospital this time.

I started feeling off-color on Thursday. I'd been crying all day, feeling utterly hopeless. I started feeling nauseated with a headache building, and upon checking my temperature discovered it was 38.6°c. I took a couple of painkillers and had an early night, hoping I'd feel better in the morning.

I woke up in the middle of the night, sweating, aching, unable to stop coughing. It must've been worse than I thought, because I woke mum, who brought me a glass of water and my puffer. I've been needing it more and more these past few days.

On Friday morning, I woke up with my head pounding and and puked, and continued to do so on-and-off all day. Mum called the GP's office and got me an appointment for that morning. The first thing she did was find the pulse oximeter. My oxygen only read 88%, with my heart pounding away as usual around 110-115 bpm. Leaving it on for the duration of the appointment, my oxygen levels got as high as 90%. This was after just one day of feeling sick.

She wants to try to keep me out of hospital, but it's always an option if need be. I'm seeing her again first thing Monday, but she said to come in over the weekend to see another GP if need be, or to go to the private emergency room if it get worse.

She's put me on a shit-tonne of steroids for the next two weeks (starting at 75mg a day - the highest dose I've had before was 50mg during my last admission), as well as antibiotics and painkillers. I think I had maybe 3-4 weeks off antibiotics this time? My brother jokes that I'm going to end up breeding an antibiotic resistant superbug.

If I'm still in so much pain and struggling to breathe on Monday, I think I'm gonna have to go into hospital for a few days, just for some oxygen and IV antibiotics, which always zaps it quicker. My exacerbations have all been so stubborn and lingering, and it's not exactly pleasant. I know this is going to sound pathetic because I've only been feeling sick for just over 48hrs, but I don't want to have to deal with this for weeks on end again. Everything is just pain and discomfort and suffocation.

I know I shouldn't complain because it is essentially self-inflicted. I know I need to cut back/quit smoking, but I just... don't want to. I've actually only had 10 cigarettes so far today (at the moment I've been smoking 30-35 a day) because it just hurts to breathe. I'm still smoking the green stuff because it doesn't trigger coughing fits as much, but overall I'm still smoking less. I guess that's a silver lining?

As far as food goes, yesterday I managed some custard in the afternoon (100), some stew with toast for dinner (158), and a hot Milo before bed (141), and the latter two stayed down. Plus diet soda and coffee I ended the day around 420 cals. Today hasn't been much better, but at least I haven't thrown up yet. I'm thinking of trying an Ensure tonight instead of my Milo to give me a bit more of a boost (Milo is also a nutritional supplement), but it's still more calories (+60-70) and I don't know if I can justify it.

In other news, I started working on a 'Tatters and Rags' skirt the other week. Basically, I keep all of my fabric scraps, and last week I sorted some of them into fabric types and bagged them up separately, and chose some for a new skirt and cut them into various shapes and sizes. Now I'm making a pattern for the actual skirt and the waistband, and then the fabric pieces get sewn on in layers. It's a lot of work but it's pretty easy, and I figure it won't bug the perfectionist in me as much as 'proper' projects do.

For now, I'm going to retreat back to the couch and continue to watch my favourite childhood Looney Tunes movies and other random cartoons and Disney classics because I don't want to have to think or move and nostalgia always makes things better.

The last Tatters and Rags skirt I made, a few years ago.
The new one's going to be mostly made of linen and with a different waistband
.

A friend of mum's gave us a Rainbow Gumtree seedling.
It's going to be so magical once it's bigger.

Picture from Google

Bill's new favorite spot in the car after his groom

xxBella

Should vs Could

This week I had appointments with both my GP and mental health nurse.

My GP told me she'd spoken to the psychiatrist last week. She wanted to give the psych a good picture of my situation, so they went back through all the letters on my file, back to my first psychiatrist at the age of 12, the bullying throughout my school years, the abuse, trauma, old inpatient psych admissions, a massive overdose at 13; she listed them off one after another, and each one hit like a bullet in the chest.

But the psychiatrist is happy with my current meds, and doesn't want to change my antidepressants because mirtazapine's "the best I'll get". I told her I didn't understand what's changed between them recommending I try the last two antidepressants and now. It's not like I've tried that many either - maybe five total because I refused to take them from age 13-18. I think it made sense to her though, because she said she'd ask the psychiatrist next month if anything can be added to the mirtazapine, because no one seems to want to take me off that. I'm not trying to be a pain. I just want something to make everything slightly less unbearable, so that each day isn't so hard to get through.

On the upside, the psychiatrist agreed DBT would be helpful for me one day, but not at the moment, and definitely not in a group setting, so that's that settled for now.

The GP stressed that we're going to go about things very slowly, because she knows from reading through my history that previous doctors etc., especially ED psychs, have all come bowling in way too hard and fast, which obviously doesn't work for me, so that's not the plan here. I'm just relieved to finally have a team who are willing to work with me instead of against me, and recognize my previous teams may've been wrong in their approach.

At some point she wants me to see a psych, which is fair enough, but still scares the shit out of me. She gave me the name of a psychologist, but said it'd be good if I could work towards seeing the psychiatrist one day. She said she hopes I can get there at some point early next year, and I'd never be pushed to talk about anything or things from the past until I felt ready to. It all seems way too fast but we'll see what the next six months bring.

Then I saw the mental health nurse, and it actually went pretty well.

She asked if I'd been doing any sewing or tapestry or anything, but I haven't really. I told her I feel so overwhelmed all the time, it's paralyzing, and there are so many things I should be doing but I can't do any of them but I can't stop stressing about them either.

She stopped me there. She said 'should' is one of the worst words, a double negative. People with depression and anxiety tend to use it a lot, but it only makes you feel worse. She said there's nothing I 'should' be doing, and I need to learn to say 'could' instead - and I'm not allowed to beat myself up while doing it.
"I could be doing X, and when I feel up to it, I will."
Not "I could/should be doing X, but I'm not because I'm a lazy fat piece of shit."

She asked if I thought I was fat, which seems like a bit of a no-brainer to me. She went on to lecture about body dysmorphia, but I really don't think I'm dysmorphic at the moment. I was at one point, but I think I see myself as I am now, and that is far too much.

She asked if I thought I needed help from the ED services team, and I just said hell no, that they're worse than useless. I told her that when I was diagnosed with AN by their head psychiatrist, it was my first time asking for help with it. In one appointment, he diagnosed me, told me I could "keel over and die at any moment" (no blood tests or obs anything, so I'm pretty sure he was overreacting), and sectioned me. Then when I was finally discharged, I had to keep seeing them until I reached BMI 18, never receiving any actual psych help along the way because they say your brain can't absorb it. When I stopped seeing them as soon as I reached the goal weight, I was told there would be 'conditions' if I ever wanted help from them again, which put me off ever going back. I'd only been sick for about six months at the time, and tl;dr, the whole experience was horrific and I don't plan on seeing them again.

And I had another silly problem with the mindfulness stuff. I'd downloaded the Mindfulness Skills CD, but still hadn't listened to it yet because I didn't know when to listen to it or how to 'use' it. I must sound like a total idiot when it comes to all this mindfulness stuff. So she wants me to listen to all five tracks a few times, pick the one I like the best, and try to listen to it at least once a day... why didn't I think of that?

Those who read all of that, you're a champ and deserve a calorie-free cookie.


xxBella

Give Me a Home Among the Gum Trees...

So, yesterday I finally got out of the house and went for a bush walk.

We went back to the You Yangs and did a 5km walk, which seemed to take forever at a little over 90 minutes. Last time we did a shorter walk, but it was nice to do an actual walk again. It's the first time I've walked more than a couple of kilometers in god knows how long.

For those of you who mightn't know, I have agoraphobia, and don't really leave the house except for appointments. I haven't been to the supermarket (the last place I went regularly) in nearly two years, and I haven't been for a seemingly 'simple' walk around the block in even longer. At the start of the year, I set myself the goal of going out once a month. I made it out in January, February, March and May, but I hadn't been out for the three and a half months since.

Anxiety aside, most of the walk was nice, but getting to the actual track involved rocky stairs, steep slippery paths, cliff faces, and lots of scary stuff considering my lack of balance and fear of heights. I handled it okay but I by the end I was really puffed and panicky and just wanted to teleport home. Recently I've been doing 1.5-2hrs of step aerobics, two or maybe three times a week if I have the energy, though last Wednesday I went for three hours straight (which I haven't done in aaaages).

Anyway, now for the pictures. I'm still really drained and just flat from yesterday, so I'll try to catch up on comments tomorrow.

The stairs from hell. They don't look as steep or uneven as they really are!

Obligatory selfie - proof I went out

We came across the Bunjil Geoglyph, which was a sculpture installed in 2006.
From the ground it just looks like a pile of rocks,
but from the sky it forms the shape of an eagle.

Golden wattle, the floral emblem of Australia.

One of my many Nightmare Before Christmas bags

xxBella