like playing solitaire in a cyclone

Sick, sick, sick.
Tired, tired, tired.

After three weeks of 100% attendance, I had yesterday off work. Just could not go. I know I don't need to explain this to anyone from the madosphere. Anxiety, depression, anger, self-injury, self-inflicted post-binge comedown...we've experienced it all, eh?? And there are any number of reasons to go back to bed and pull the covers up over our heads rather than get up and go to work. Sigh. I'm just so damnably SICK of being sick, physically and mentally. I'm completely over it. I sometimes look at people I know who have strong work ethics, positive attitudes and iron-clad constitutions and I just want to kill them!! Jealousy is overwhelming. I want to be really well, not just a little bit, copingly well. I want to have true energy, not fake caffiene-induced bursts of effort.

All this whinging does nothing, so I shall stop it. I went to see my doctor on Monday after work and he showed me the results of the blood tests, which aren't good. Not only am I in all likelihood suffering from a lupus flare, I am also extremely anaemic and possibly bleeding internally (therefore causing the anaemia) from an ulcer or bowel polyp. Polyp is such a funny little word. Anyway, I have to have a gastroscopy and colonoscopy, but can't get bookings for them until late July (and that's in the private health system). So I just have to wait, and take massive amounts of vitamins and minerals in the meantime hoping to raise my iron levels. I will see my rheumatologist Dr Paul sometime in the next couple of months to update him on this latest information and see if he has any insight. A couple of other areas of the blood count were abnormal too, in ways that can represent a lupus flare.

In some ways, lupus reminds me of Borderline Personality Disorder. It tucks itself away, hidden somewhere deep inside so that you think you have it licked. Then when you relax, pat yourself on the back and congratulations for a job well done then BAM! It comes back full force, and makes a total fool of you. I can fight it, and strategise against it (immunosuppressant, anti-psychotic, NSAID, anti-depressant, mind/body medicine, DBT, CBT, therapy, meditation, rest, blah blah) but in the end, it never, ever, ever goes away. Not permanently. Not for any length of time. Just long enough so that you take your eye off it for a second, and thus give it chance to take over again. I'm just so damn tired of having to be VIGILANT.

Yesterday's "mental health day" off work was made marginally better by the arrival of a fantastic parcel of zines I bought from Sarah at This Lunatic Express. I think most of my followers also check in over there, but for anyone who doesn't know Sarah, she's a great writer and has experienced a lot. Her zines cover all aspects of her eating disorder, BPD, bipolar, anxiety, hospitalisations and more. Reading them made me admire her even more, she is brave and honest and I need a kick up the ass for feeling so sorry for myself when people like Sarah have a lot more to deal with than me. Get her zines, people. Read them. She rocks.

This morning I got up and showered and dressed, then laid back down in bed. "I can't go today, honey" I said to Neil. He hugged me and said "You need to go to work, babe. You need to try, even if you come home during the day if you feel bad." I didn't know whether to slit his throat or hug him back. "Otherwise, it just gets too easy to say "I can't" and no longer try," he continued. Hating him, loving him, knowing he was right, I got up and went to work. He's right. For me, it does get easier the longer I avoid things. And I need to work. Financially I just can't afford to go back to the way things were unless it's completely 100% unavoidable. Today it wasn't 100%. Tomorrow, who knows...

(Title from Darren Hanlon's song "People Who Wave At Trains". I like to wave at trains, by the way. Not local, public transport trains, but definitely long distance holiday-maker trains. When I travelled across the US on Amtrak trains I loved waving out the window to the little kids who waved to me. Good times.)

we wear our bruises like watermarks

Thank you so much to be darling friends for your comments previously. I wish I could say things have improved. They are made markedly worse, at the least complicated, by the re-appearance of my lupus in a hideous whole body flare that threatens to render me inert. (FYI - Lupus, or Systemic Lupus Eurythematosus is an autoimmune disorder, whereby the body's immune system attacks itself, eg: organs, joints, skin, rather than attacking external threats like bacteria or viruses. It's usually hereditary and incurable).

I'm not foolish enough to gloss over the connection...mind/body medicine is one of the things that cured my fibromyalgia (kind of similar to chronic fatigue and sometimes connected with lupus) and helped control my lupus, so I know that what I think and feel is reflected in my physical wellbeing. The fact that I've been struggling with some emotional issues has left me fatigued and rundown, and a perfect target for a lupus flare. So far it has shown up as joint pain (particularly my hands and right knee), constant nausea and neck pain. I'm lucky, in that my degree of lupus is very mild (so far). I am medicated for it, which helps, and thus far my autoimmune system hasn't attacked any serious organs. I know people who have kidney and liver or heart disease from lupus, and people who have lost eyesight and mobility. My paternal grandmother died because of it.

Anyway. I am now feeling even sorrier for myself, and struggling even more to maintain a positive outlook. I am even tireder than I was when my problems were "just" mental/emotional. The way I beat fibromyalgia and controlled my lupus in 2005 when I was first diagnosed was through fairly strict mind/body medicine - predominantly meditation and diet, as well as the medication.

I just don't think I have the energy it will take to get well again.

Last time I was ill, my mental state was strong, I was in (what seemed then to be) a supportive marriage, I was barely working in a casual job. Basically, I had a lot in the positives column. Now...it seems like things were just starting to take shape for me in my new work/home, and BANG, life throws me a curve ball. Ain't it always the way.

Neil is even more concerned than before, now I'm even more bedridden and exhausted and complaining. I have to make an appointment to see my specialist and find out if my medication needs changing. There really is only one medication for lupus (Plaquenil) but maybe I need more, or something new might have become available. I was so complacent and cocky... I thought I had the lupus whipped.

My mental state has kind of taken a back seat at the moment. I'm feeling okay, coping mostly with work and getting on well with my adorable man. Big picture is kind of blurry. Finer points are kind of rough round the edges. I haven't felt BPD-ish for quite some time, which is mostly (I think) due to the basic CBT/DBT I have ingrained in me, as well as the medication and a strong relationship based on honesty and boundaries. But the scary part is, I feel like I may be slowly unravelling. If I have lost control of my physical health, is my mind the next thing to go??

Title from Perth band Birds of Tokyo's song "Plans".

you're an angry blade and you're brave

A small update post-conference. It's been, it's done, seemed moderately successful apart from the usual technical glitches and no-shows. Sir J has moved on to his next "gig", and I am enjoying a well-earned day off.

Tomorrow I have to go and have the MRI I've been avoiding most of the year. Dr A has often said it would be useful to see what effects, if any, my lupus has had on brain function (and, ergo, depression, headaches, mania, moods, etc). I guess it will be interesting to know if any lesions are present, not that there's much they can do about them. Maybe it will turn out that I have a cabbage in my head instead of a brain haha.

Increasing my dose of fluoxetine has not helped my OCD or binge eating at all, and Dr A is suggesting a mega-low-dose anti-psychotic be added to the mix. I would then reduce to my previous low dose of fluoxetine, as the Abilify (or whatever) will be activating enough. The meds merry-go-round is so annoying, and confusing. But it would be good to not be a slave to the trich and binge rituals... Any feedback or advice from y'all would be welcome, as I know Abilify is something lots of folks have tried. Apparently the risk of weight gain is less than with other a-p drugs?

So much going on, no wonder I find it hard to sleep through the night. I am determined to not start medicating for sleep, though, as I know it's a hard road to come back from. This may sound like a negative post, but I'm feeling well. Relieved the work situation will now wind down slowly until December, when the Foundation closes for a month.

(Angry Blade - Iron & Wine)

The Reinvented Self

The week continues on it's merry (somewhat TOO merry perhaps?) way. Sweeping the patio, walking the dog, cooking, cleaning, job interviews. It's all go at the L Ranch. There's a small and hellishly contrary part of my brain that is fighting it, still. I am trying to resist the inevitable analysis...is this energetic and cheerful person actually ME? Is it "normal" for me to feel hopeful, positive and motivated, all in one day? Is this one of those SSRI-related manias I've heard so much about? All I can do is be vigilant and document any out-of-character behaviours.

The medication is also supposed to have a positive effect on impulse behaviours; sadly so far my trilogy of tragedy (derm, trich, binge) are still firmly in place. But I have been able to go three or four days without harming in these ways, so I think the CBT is helping there. I am trying to distract myself and find other outlets. This week I started drawing, which I've always wanted to try - bought one of those "Drawing For Dummies" type books and so far I'm loving it. I am typically BPD in that I adore new hobbies haha!

Dr A has written a referral for me to have an MRI - apparently lupus/SLE can cause brain lesions and other nervous systems problems, and in 10% of lupus patients the disease causes personality disorders, depression and/or psychosis... Um, maybe that's something I would have found useful to know 5 years ago? Twenty years ago?? I seriously doubt that my lupus has impacted upon or caused my mental illness. Even if it has, the treatment (for the vasculitis or lesions) is masses of corticosteroids, which I refuse to take. But the knowledge will be powerful, just the same. I can't believe that the rheumotologist, haematologist, allergy specialist and previous psychiatrists have never mentioned an MRI...