Joy lies in the fight, in the attempt, in the suffering involved, not in the victory itself


Thursday, May 26, 2011

Mad Cow

I wrote a post yesterday which I then deleted. It's the first time I've done that, and some of you have asked about the missing entry. I guess it was clear from the couple of lines you could read that it was a low-mood mopey post, and those reading regularly will know anyway that I've been somewhat under the weather.

Once I'd written the post, I published it and then went to read it over for editing. Put simply, it sucked. It whined on about how attached I am to being ill, and how I feel envious of my blog friends who are currently "worse off" than me (with regards to ED, or being in hospital, etc). Utter crap, something I felt for a minute and then pretty much "got over". One thing I've learnt about myself is that I don't need to give voice to every thought and feeling I have. Some of them just aren't worth the air time. And that's what was going on yesterday. Even if I am feeling low, intellectually I know that I am okay and surviving, and I don't want to be in the grips of a fullblown BPD attack or major depression. I feel extremely sympathetic for my friends who have recently suffered relapses.

Today, I'm mostly just tired and lethargic. But, contrary to what was said in my previous/deleted post, I am not too tired to keep fighting. If fighting the good fight is all there is, then so be it. What are the alternatives? None.

Friday, May 20, 2011

who will sing me to sleep

My gorgeous friend Pixie (she of the wicked blog Clouds and Illusions) introduced me recently to Kate Rusby, an amazing Yorkshire lass with a voice like an angel. The title of my second post of the day (unheard of!) is from her song "Who Will Sing me Lullabies". Almost as lovely a voice as Ms Pixie herself!

As lots of folk are, I'm preoccupied with death. I'm not sure if that's a result of, or a cause of, suicide attempts, but I tend to think it's linked. I also had a near death/out of body experience when I was 7 years old. I don't think it's healthy, to think about death and dying as much as I do... I realised the other day that my job is not helping me to change that focus. What I do each day is watch video of major roads in the state, and assess each road for hazards that may result in fatal car accidents. Basically I watch as a tree passes and decide "yes, that may kill someone if they crash into it". Then I record it on a spreadsheet. So my whole day is filled with thoughts and decisions about fatal car accidents. Death. I also have to make a record of roadside memorials. I guess they are all over the world? Where a family sets up a cross and shrine to mark where a family member (or members) have lost their lives in an accident? Cheerful work. NOT! No wonder I am morbid and preoccupied with death. No wonder I am afraid to get my drivers licence!

All the doctor talk about bleeding, ulcers, polyps and tumors doesn't help either. I realised today that I've never told my parents or Neil what song I want played at my funeral. Have I reiterated that I want to be an organ donor?? Have I told them I want to be cremated???

I thought I'd ask you guys what song you most want played at your funeral, if you've considered it. I think most of us have at some stage or another. My song is Moby's "We Are All Made of Stars".

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.)

Monday, May 16, 2011

is this a hickey or a bruise???

I'm completely in love with Katy Perry's new song "Last Friday Night", which is where the title of today's post comes from. One of the other things I love most about the gorgeous Katy is this..

I want, I want, I want! Her new perfume is just the bomb. Luckily my birthday is next month and I've been dropping major hints to Neil haha.

While on the subject of cats, I totally love the new comic from Yasmin at Cat Versus Human:

This is EXACTLY how my friends react to my cat-fluff-laden house and clothes. But what can I say, I love Charly to pieces and if she wants to sit on my best sweater or sleep on my pillows, she is more than welcome! Thank heaven I found a man who loves animals just as much as I do!

Things with me are going okay. Still exhuasted and nauseous, I have an appointment with my GP this afternoon to find out the results of my blood tests. Am going to get an appointment with Dr Paul, my lupus specialist, in the next month or so (hopefully) to see if this is a lupus flare or something else. I had a great weekend, though, mainly because of the Eurovision Song Contest, which regular readers will remember me raving about last year. I just love it, lots of Australians watch it each year even though we're clearly NOT part of Europe LOL. It's kitsch, quirky and in bad taste sometimes, but some of the music is awesome and I love learning bits and pieces about other countries. This year's winner was Azerbaijan, who were one of my top 5 acts. Neil looked up Azerbaijan on wikipedia after the win and we learnt all about their independence from the former USSR, and that the capital is Baku and the population is approx 9 million. It's a Muslim country, and they were the first Muslim country to initiate voting for women (in around 1918, so years before the US or UK!). We're such a romantic couple, laying in bed googling hahahahaha.

Thanks for everyone's support over the last few low-mood posts. I'm so grateful for this blog, and the blogs of my friends, which help keep me moderately sane! I'm also grateful for my readers, of whom I now have 103!! Thank you for reading, commenting, emailing (-:

Things I love just now...

* Cats

* Neil

* Coffee

* Blogs

* Survivor's Boston Rob - bless his heart xx

* Adele's CDs 19 and 21 (anyone who hasn't heard her, look for her Brit Music Awards performance on youtube, it's just amazing)

* Buffy

Wednesday, May 4, 2011

how many times could you have blown a kiss...

...but instead you swung your fist? My favourite band at the moment are The View, and that line is from their song "Beautiful". I like that line because it sums up how much of life is choice, and how much choice affects our self-esteem. I am trying to be more positive this week, in an attempt to re-wire my mind/body connection and perhaps feel healthier. Wish me luck!

In the spirit of such things, I am copying some of my favourite bloggers (Sarah at This Lunatic Express and D'Arty at Living In Iowa as well as the fabulous Wandering Coyote) and writing a post about the positive things in my life. It may end up being short haha! But it's something I don't "do", and should. I am grateful for a lot, and need to focus on that rather than feeling sorry for myself. So here goes.

  • My relationship with my angel Neil is healthy, and happy, and he's a damn fine bloke. I'm lucky!

  • Biological Family continues to be a positive experience, after many years of the opposite. My mum is finally in therapy, which is great for her but also the rest of us (-:

  • We recently got a new addition to the family, Roxy - an 18 month old cat who belongs to Neil's son Jarrad but is equally loved by all of us. Except my cat Charly, who is not one to play well with others... Here's Roxy...

  • My ten pin bowling team No Deal are placed second in our league, and considering we are an all-girl team that's pretty awesome! Traditionally men bowl better than women, apparently. Blah.

  • Michelle (my former housemate) and I have tickets to the Roller Derby on May 21st which will be freakin' wicked!!

  • I no longer have to take valium regularly to survive work, even though I'm working fulltime. It's a fairly dull job, but worthwhile, and I'm left alone doing it. It's quiet and low stress.

  • I have an appointment with Doctor Graeme, my lovely GP, on Friday and will be able to organise some blood tests and a referral to my Immunologist Doctor Paul. Steps towards better health!

  • I am incredibly fortunate to have support from this madosphere, the mental health bloggers, who are terrific and wise and funny and brave. Thank you!

I have to admit, I feel happier for having made that list. It cancels out all the worries and stresses I normally have on my mind. Maybe I will have to make it a regular thing. Neil and I are currently in the midst of a Buffy The Vampire Slayer marathon, after seeing the original movie on television a couple of weeks ago. I have all the DVDs (and Angel). My latest saying has become "What Would Buffy Do??" when I get negative. While I'm not planning on taking up staking or kick boxing, having an attitude of strength and survival is all-too-important.

Monday, May 2, 2011

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. 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".