Endometriosis & adenomyosis 1

“Extensive and severe” are not the words you want to hear when a doctor gives you a new diagnosis. Frankly, I personally feel that I have reached my quota for diagnoses, and that if anyone wants to give me a new one, they should have to trade in an existing one. Pick a card, any card… Sigh. So, I’ve been having as bunch of tests over the past few months to check up on my fertility. I’ve already been diagnosed with mild endometriosis, and donor assisted conception can be wearying for both families involved so we wanted to do all the checks we could and get any treatments needed before wasting a lot of time trying to conceive if there was a problem. So far a lot of the news has been good; I have healthy ovaries and lots of eggs. A few weeks ago Rose and I received the news that I have severe adenomyosis. It’s a bit hard to process, and I find it harder to share about physical illness and disability than I do about my mental health, so I’ve sat on it for awhile.

On the one hand, having a name for it makes no difference to what I’ve already been living with. On the other there’s a huge weight of sadness and fear. Perversely, there’s also a sense of vindication. I was frequently ignored and had my terrible symptoms downplayed by medical people and others, especially as a young woman. It was devastating and made me feel profoundly alone and overwhelmed.

A crash course in the conditions, not for the super squeamish. The womb has three layers, the outer one is muscle, then there’s a layer of tissue, and lastly the inner layer which is called the endometrium. This is the part that grows and swells up ready for a pregnancy, and then sheds and bleeds every month as a period. A healthy endometrium is essential for a fertilised egg to implant (that means link up to the womb via the umbilical cord) and be nourished and grow. In endometriosis, (endo) little patches of endometrium grow elsewhere in the body. Most commonly they are elsewhere in the pelvis, such as growing on the ovaries, intestines, and other organs. More rarely they are elsewhere in the body such as the lungs. It is very rare, but possible for men to have endo.

Nobody knows for sure how or why these patches occur. They’re like weeds, growing all over the place where they shouldn’t be. The big issue is that they try to function like the endometrium does, every month they swell up and then shed blood. This blood doesn’t drain away the way a period does, so there can be issues with pain and infection, and sometimes they can chew into places such as ligaments or patches of nerve cells. They can cause fibroids and adherence where tissues glue together, such as sticking the ovaries to the pelvic wall, which can cause worse pain. If the affected tissues are delicate areas such as the fallopian tubes, endo can compromise or destroy fertility. It’s also common for the extra blood loss to cause iron deficiencies. Endo is usually diagnosed through a laparoscopy, a surgery where the gut is checked out with cameras through small holes in the skin around the belly.

Treatments for endo are more usually about managing it rather than curing it. There’s a range of options from surgical removal, using hormones such as the Pill to prevent periods and therefore stifle the endo growth, dietary changes and so on. Some people find some approaches way more effective for them than others.

Adenomyosis is similar, in that again it’s the endometrium cells growing where they shouldn’t. With adeno, the endometrium invades the tissues of the womb itself. Pockets of endometrium cells swell and bleed into the tissue. In severe cases, all the womb is affected. It’s swollen and heavy with the pockets of extra cells, there are issues with pain, excessive bleeding, and cramping of the muscle layer. In some cases the adeno prevents the clamping down on blood vessels that supply the womb, causing chronic pain and bleeding problems. With severe blood loss, the body struggles to replenish the supply of red blood cells and severe anaemia can result. There’s only currently two ways to diagnose adeno: one is performing a hysterectomy, that is, taking out the womb, and then examining it. This is obviously not appropriate for young people or those hoping to have a child. The other is through an MRI scan, which is not quite as conclusive, but gives a lot more information than other scans such as ultrasound.

It’s only been fairly recently that adeno had started to be diagnosed, so not very much is known about it and sources of information are conflicting. It may increase failure rates of implanting embryos, miscarriage, preterm labour and other fertility challenges. Treatments are very limited, in some cases surgical removal, or hormone blocking to shrink the growth – sadly this only has a very temporary effect. Three months of hormone blocking will provide about three months of adeno-free cycles.

Both endo and adeno usually respond really well to pregnancy, and it used to be common for daft doctors to suggest pregnancy as a management tool. This is partly how the hormones help -they mimic pregnancy in the body and when taken continuously (without sugar pill breaks for ‘periods’) they suppress the growth of each. Both endo and adeno can be odd in that how severe they are and how bad the symptoms are don’t always line up. Some people with severe endo have few or no symptoms while others have mild endo but suffer terribly. The location of the endo may have something to do with this – for example endo that chews into areas with a lot of nerves may cause a lot more pain than endo in areas without many nerves. Some people have awful periods and problems with pain and no clear cause can be found, which can make figuring out a treatment incredibly difficult.

So, we have no way of knowing how the adeno may impact our baby plans. I’m having a lot of trouble with experiences of severe depression when we make even minor changes to my dose of hormone to manage these conditions, so at this stage we’re avoiding the hormone blocking treatment because I think my head might fall off or spontaneously combust. We’re tailoring my dose down carefully, hopefully in a couple of weeks I’ll be completely off the pill and ready for my first cycle! I’m taking iron supplements already as the severe bleeding leaves me badly anaemic, which is not good for me and particularly not good for a developing baby. We’ve also made the call that my efforts to be restored to a ‘natural’ cycle at some point are pointless – when I’m not trying to get pregnant I’ll be using hormones to keep these in check. The longer I’m off the pill the worse the symptoms get, so we’re hoping for a 6 month try at pregnancy then we’ll re-evaluate. We’ll be tracking iron levels pretty closely and if I’m lucky I’ll get pregnant quickly before the adeno makes it impossible to work. If I’m very lucky I’ll also have a good pregnancy! Lots of unknowns, but a little more information than we had before. And certainly all worth it for the chance at being a Mum.

Drawing class – maize

Rose and I are both sick with a tummy flu, and serious case of the doldrums. Siiiiiiiigh. I’m finding being sick so depressing it’s hard to breathe. I’ve had a bad headache for three days now. Or one month, it’s all blurring in together with sinus infections and surgery. I saw an ENT at the hospital the other day, he’s happy with the surgery and said everything is healing well. He also said I shouldn’t still be having facial pain and should see a neurologist. He was a bit of a dismissive ass, to tell the truth. Everytime I hear about how people with mental illnesses would be so much better off if they were treated the same as people with physical illnesses, I kind of want to laugh, in a hysterical, jaded, painful, coughing-up-a-little-blood kind of way…

I don’t really know what to do with that. I know I have issues with chronic tooth infections, and I’ve had basically two years of sinus infection near constantly. I also have issues with TMJD, pain caused by muscle tightness in the jaw. And I’m nearly four weeks out of surgery. At this point, I think it’s pretty reasonable that I’m still in some pain, and if the surgery healing isn’t causing it, likely one of the diagnoses I already have is. Despite a letter from the jaw specialist, and me reminding every single person I saw about this op, including the damn surgeon himself in the actual theatre, the request to scope my left check while I was under and check if there was infection or just scar tissue showing on my xrays was ignored. So I’m going to have to go all the way back to my dentist again and try to figure out if my root canal has gone bad and infection is eating my jaw, or if nothing is wrong and we leave it alone… Bastards.

In Drawing class, which I think I’m still just possibly attending often enough to maybe pass, we were instructed to make many multi media images of a single item. I chose a dried cob of maize.

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This last one is my favourite. I love inks. (They’re painted on white gesso)

Our greatest adventure

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Rose has the best taste in baby clothes, she came home with this little gem the other day. It reads “this is our greatest adventure”. Couldn’t agree more. It’s beginning. I’m finally recovered enough from surgery to begin walking again. I’m tapering off my high dose contraceptive pill to a low dose one (quick changes in hormones send me into severe depression). And I’ve started on folic acid, iron, and skin care for stretch marks (dry skin, eczema, dermatitis, hives, hot weather, and pregnancy weight gain do not make for a happy person).

It’s scary, exciting, wonderful, confusing, sad, strange, moving, and uncomfortable. Definitely an adventure. We’re making our maps up as we go, having amazing experiences, getting lost, sometimes falling off cliffs. There’s no one I’d rather be off exploring with. 🙂

Our family van

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Rose and I have bought a van! Eep! It’s a Mitsubishi Starwagon, and we’ve called her Luna. 🙂 What’s so exciting about her is that she has a row of back seats that fold down to form a platform we can put a bed on to go camping! This is the best of both worlds for us, we can camp, and also put baby seats in the back. It has air conditioning and power steering which is perfect for me, it drives as light as a cloud and is easy for me to manage even when I’m tired and sore. We’re very excited about it!

We’ve had to borrow money to buy it, we’ve been able to save a lot this year but not enough for a swish vehicle like this. We’re waiting anxiously to hear whether Rose will have her contract renewed at work. If she does everything will go swimmingly. If she doesn’t but land one of the other jobs she’s been applying for, we’ll be okay. If she winds up unemployed for a stretch, we could be in trouble and may even have to sell it and buy something something cheaper or drop to one car between us. Fingers crossed! It was a big decision and we talked loads about it and crunched all our numbers and thought about everything else we could buy with our savings… And made the call that a second home on wheels would take some of the stress out of moving us both into my little unit. So we’re going to try!

One step closer to starting our family. 🙂 And we have two running cars again! I can go out during the week while Rose is at work and run errands! Life is so much easier. 🙂 As soon as we get the bed base braced we can go for a camp – I can’t wait!

I’m still very tired but slowly continuing to recover. The last few days have been kind of all weather in one day, lots of stress with loved ones going through really rough situations, intense conversations and so on, but also fun times, moving times, a walk on the beach, ice cream, and the end of season three of Buffy. I’m tired, grateful it’s bedtime, and looking forward to a new week.

Green light

I’m sitting outside my GP office and I can’t think straight. The last of my blood tests is back and I have a green light to start trying to conceive once I’m feeling better. I’m immune to everything I need to be immune to, not infected by anything I shouldn’t be, my liver is working at full capacity after the surgery. The only test left I could do is to see if my tubes are clear but given that it’s expensive and incurable and unlikely Rose and I have decided not to.

It’s been an interesting few months. I’ve received mixed news on the pre conception tests, mostly positive but some distressing. The process of trying to conceive could be very difficult, drawn out, and painful. Almost none of the meds I currently use are regarded as pregnancy safe so that’s going to be interesting as there’s no substitutes. And I can’t give birth to our baby in South Australia if we want Rose to have legal recognition as their parent. I don’t know quite how we’re going to manage this.

But we have a green light.

Oh my god.

New resources

Another day working on my free community resources. I’m still crook but able to get things done, albeit slowly. Very focused on the work today but also very dissociative and spacey. Hoping tomorrow will be easier.

Today I have

I would love to hear your thoughts. The DI site is almost to the point where I’m happy with it and ready to move on and properly flesh out the Hearing Voices site, then I can get on to the Homeless Care site and back to my own Business development. Tired! But happy with the progress.

My new brochure!

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First print run of my brochures advertising a talk I give! You can read it in full on my business website sarahkreece.com.au. Very excited. I was sick all night and spent the morning in bed, but wound up having a really nice day. Lunch with a friend, tremendously excited about my brochure, and returned all my overdue library books. 🙂 Very successful day. 🙂

Humming

Humming with happiness. Starting to get better! Reducing pain killers finally. Had a wonderful face painting gig in Stirling today, dappled light through trees, so peaceful. Well enough this evening to update the DI website a little, yay! I’ve added some new pages and I’m working on fixing up all the language to be consistent across all the pages. I’ve settled on using the term ‘people with multiplicity’ as the best inclusive, non clinical description I can think of for now. I’m still using parts for alters which I know some people hate but I can’t think of anything better. ‘People’ just gets seriously confusing because it’s so hard to work out whether we’re taking about alters or other people in different bodies! Work in progress!

So I have a few new pages up:
A note about language
Transgender & Multiplicity
Memory & Amnesia

Feedback would be most welcome. I’ve also finally decided my flyers for talks are ready, and two are now uploaded to my business site! There so much still to do, but it’s so very exciting to be well enough to make a start. 🙂 You can check them out here:

Talks and Workshops

Tomorrow I’ll be resting and working on some housework. I get to snuggle and hang out with Rose all weekend. 🙂 Things are looking up!

Homeless and happy

Zeusy's new friend Zoe & her human Sarah, outside the Hindmarsh Library.              It was nice to meet Yew both !!!

The other day I ran into a travelling artist Novak Tonkin and pooch Zeus. He asked to take a photo of Zoe and I for his flickr page which is here. He photographs his travels and people he chats with as he bikes around Australia. Great chap to have a chat with.

Once again. I’m struck by the difference between different experiences of homelessness. Some of it is about choice, some of it is about community, and a lot of it seems to be about skills and resources. I wish I’d known half the things this guy knows when I was homeless. How can we change experiences for people who are struggling? Surely part of it is linking people to peers who are coping, and sharing those skills.

Jumping at Shadows

I got really sick in 2001. It took another two years to get the first diagnosis that made any kind of sense – Chronic fatigue syndrome (CFS). Two years again to fill out more of the picture with diagnoses of Fibromyalgia and Endometriosis. It wasn’t until 2007 that severe Dissociation started to round out our understanding of my perplexing and severely disabling experiences. There are still some unknowns. For example, we know that none of the mucous producing cells in my body work very well, but we don’t know why. It doesn’t fit with any my existing diagnoses and I test negative for the only other diagnosis offered, Sjorgens. So I live with dry skin and dry mouth that destroys my teeth and dry eyes that cause widespread nerve die off and means I have to be very careful about caring for them because I can’t feel it when an irritant gets into my eye. The only other possibility offered to me is chronic anxiety destroying mucus function due to PTSD, which I developed as a child.

Today, it’s day 14 after the surgery and I’m home on the couch, completely exhausted and scared. I have some very, very bad memories, and at times like this I get scared. CFS and Fibro are diagnoses of exclusion. That means I spent years getting tests and seeing doctors. We learned things the hard way. Like that my liver doesn’t seem to work so well. Or that I’m allergic to opiates. I tried a lot of pain killers under desperate circumstances before someone figured out it was the whole drug family I can’t process. At one point, my health was crashing so fast and so catastrophically with no answers that a specialist warned me they might be figuring out what was wrong with me in an autopsy. My mother was told to be prepared for a funeral. There was so much fear. Bone deep, soul killing, trembling but nowhere to run, and no one to fight, and no point in screaming, and no escape, fear.

There’s host of horrifying memories. Lying on the floor vomiting due to an allergy to Digesic, stomach acid burning in the 6 stitched holes in my mouth, the sensation something like biting down on burning coals that don’t cool. Screaming, unbearable agony.

Memories more banal, the daily suffering. Not leaving the house in months except to see doctors. Being told everything was in my head and I just needed to exercise more. Passing out on the footpath while walking, trying to manage Depression I didn’t have. Endless rounds of job applications for work I wasn’t even slightly well enough to do. I remember months of severe dental pain, living on milkshakes and blended peas. I remember baths in my clothes so a family member could come in and wash my hair because I was too exhausted to lift my arms that high. Old friends asking me in bewilderment “What do you do all day?”, new friends telling me they wished they had CFS so they could have a holiday. Crying with frustration and wishing desperately for the day I would be well enough just to do half an hour of cross stitch a day, for my sight to return and the pain lessen and a tiny bit of energy to come back, not enough for a life, just enough for a tiny, quiet hobby to give some shape to the endless days. I would have given anything, just for that.

So there’s terror, and memories of terror, and a kind of survivor’s guilt. I know many people are still living in their nightmares, lives shortened by illness, chronic pain and disability destroying dreams and caging a big hopeful heart in a dark place.

Today I’ve been scared. I had a terrible down turn in my life after a surgery previously. It was to remove infected teeth, I was told the abscesses were drip poisoning me and I’d be much healthier after the op. Instead I had allergic reactions to everything and my health crashed. For the next few years I needed a wheelchair or electric scooter to be mobile most days, I was so exhausted and in such terrible pain. It doesn’t take much to bring back that fear.

So today I’m reminding myself that those days are gone. Even if I got really sick again, it won’t and can’t be like it was. I’m no longer lost and bewildered in a dark woods full of monsters. I know the territory now, I understand the need for grief, the place of rage and humour. I’m not being tormented by a mad lover or spending energy desperately trying to hold onto empty friendships. I have names for what is wrong with my body, I have a safe public housing home to live in, a secure income on welfare, a lovely doctor who looks out for me. The nightmare that scares me is just a memory now, I’m jumping at shadows. So I sit here on the couch with my white and orange dog, and we eat Zooper Doopers and watch Buffy and life goes on. The fear that was choking me settles. The trembling in my bones calms. This is my life now, and sometimes it’s scary or painful or hard. But those terrifying days of loss and torture are gone. I made it through.

Prodromal

Well, yesterday was trippy. I’ve identified that I’m currently prodromal, that is, vulnerable to developing psychosis. Well hurrah. I thought I’d got through enough of the surgery recovery to no longer be at risk, but apparently not. I’m allergic to anaesthetic and opiates, and I don’t tolerate antibiotics particularly well. The last few weeks I’ve had way too much of all of them. Psychosis is a symptom of liver stress. The hospital was supposed to check on my liver with a blood test before sending me home but the doctor who discharged me was a… was in a hurry and couldn’t be bothered. Rose took me to the GP a couple of days later but he couldn’t draw any blood from me. I haven’t been able to get to a blood centre since. So I’m assuming my liver is bouncing back as usual but don’t really know.

Yesterday was hot (38) and I was exhausted after working on the weekend. I spent the day hoping to be able to get to my night class at college and feeling increasingly despondent as pain levels and exhaustion stayed high. In the end I decided that if I moved slowly enough I could manage it. So I got dressed and headed out on the bus. That’s three of my risk factors right there: heat stress, liver stress, and exhaustion.

There’s about a 700m walk from the bus stop to college, through town. This was almost beyond me, particularly in the warm weather. I took it slowly and accepted I might be late, and brought coins to buy a cold milk chocolate from the canteen once I arrived.

On the way I passed the strangest sight. A considerable amount of blood was spoiled in the gutter and dripped onto the sidewalk. It was dark and fresh, not yet congealed. Head wound kind of blood spill. I looked around but couldn’t see anyone injured. The crowds were all rushing to get home from work, I’m the only one who stopped. There were footprints tracking the blood over the pavement. It was such a jarring sight, so unexpected and dramatic it felt like it jarred me out of sync with everything else.

That’s a familiar feeling.

I had a big reaction to the blood, similar to the one I usually have to needles. That’s new. I could see blood on my hand and my head got very noisy suddenly. I tried to conjure the soothing images I used to manage the drips in hospital recently, not only couldn’t I hold the images steady in my mind but they dissolved and transformed into drowned children on a moor. Distress compounded – the old story – a trigger, a trauma reaction, and panic about the trauma reaction. I was seriously stressed at the prospect that my needle issue seems to have spread to a major reaction to the sight of blood also. I managed to strangle that train of thought as not helpful at that point, and talked myself down out of a panic attack. I limped on to class. The sense of being out of sync persisted as did a sense of high agitation.

I bought chocolate milk and soft banana bread. Food and drink are very important for reducing psychosis! I sat in the air conditioned room and the lecture began. Unfortunately we were studying the shift from neoclassicism to romanticism and a number of the slides were highly disturbing artworks such as Goya’s war prints. I find these moving and distressing when I’m not triggered. In an existing state of high arousal they were intolerable. I was struck by how little we talk in mental health about managing agitation when that’s often the precipitating aspect of crisis. It’s despair plus agitation that’s so dangerous, mania plus agitation, anxiety plus agitation. Is also one of the experiences the mental health system is so so poor at managing. I’ve sat with a distraught friend in ER, so wired she couldn’t lie still, and supported her to pace off the adrenaline around the room. Every time a staff member came in they made her lie back down where she shuddered and twitched and moaned. As soon as they left I told her or was fine to get up and pace again where she felt calmer. Eventually she naturally wore off the energy and was able to sleep.

So I let my legs jitter and hands shake and focused on the lecturer instead of the distressing PowerPoint and contemplated whether I would be better to leave class and try and get a lift home now or less distressed to just ride it out. Rose was on standby. I stuck it out and finished class and Rose collected me. A strange split state came over me. One moment I’m entirely settled, lucid, connected, grounded, except for the lingering sense of being out of sync. The next I’m scattered, full of awareness of things I know no one else is perceiving, flashes of images, feelings like a storm. They’re distinctly different. Over a few hours the scattered state diminishes but the settled state isn’t quiet normal either. I’m restless, energised although exhausted physically. There’s a curious desolate loneliness I’m learning to associate with psychosis, I feel distant from everyone and resentful of friends who haven’t reached out. And a detached amusement that feels dark and wild and slightly dangerous.

Rose is stellar. I’ve written before at more length how I approach psychosis and it works very well for me. The short version is: Eat, drink, sleep, rest, listen to your impulses/inner voice/intuition (but think it through before acting on it), and don’t panic. Pretty much the same applies to someone playing a support role. Holding the space, not panicking, remembering what works, and talking to me like I’m still Sarah are my key ones. She also tunes in and keeps an eye on me for new triggers – psychosis is weird in that stuff that normally doesn’t impact you can suddenly trigger it. I’ve spoken with people who have smoke alarms talk to them or all kinds of strange things. Sometimes trauma links can be figured out, sometimes there’s just the strange surrealism of dreams. I’m careful around anything with spiritual, religious, or paranormal content. Avoiding is perfectly fine at this stage. Buffy however is okay for me, which is how I’m spending today. 😉

Rose and I actually had a really nice night together. I slept well with some phenergan. Today I’m exhausted and a little bored and over heated and taking it very easy. Rose is at work sending me possible baby names in her lunch break. It’s not exactly the most terrifying crisis ever. I’m eating icebocks to numb my throat and finishing the second season of Buffy. This is what it can look like, almost dull. Responsible. I’ve never lied or concealed my prodromal state. My people don’t terrorise me by taking away control. There’s trust and honesty, the kind that will make me a safe parent, the kind that make me a decent partner. We work together, and suddenly the bogeyman isn’t so horrifying after all. Such is life.

Sophie turns 2, with cake

Sophie, my gorgeous god daughter, has just turned 2. Rose arranged the gifts this year, and I decorated the cake. Rose put a great deal of thought into the collection of presents, and none was more appreciated than the mini trampoline she assembled from flat packed with only a few bruises and cursing before the big reveal. Sophie has christened it Bounce and it gets a good work out. She was extremely difficult to photograph! She’s reached that age where the only time she’s still is when she’s asleep. 🙂

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I somehow pulled off 9 hours of work in total yesterday over 2 busy gigs, between exhaustion and the post surgery pain I was in no for state to bake a cake like I’d arranged. So we did the next best thing, Rose arranged a mud cake from the local Cheesecake Factory, and bought me ingredients for an excellent crusting buttercream frosting, and I decorated it this morning. I’ve not done a lot of this kind of piping work, but Sophie’s Dad specifically requested buttercream as she really enjoys it, and I’m personally a huge fan of cakes with minimal fondant ie ones that actually taste good as well as look pretty. So I decided to pipe a bouquet onto the cake. Finished with her name and sprinkled with a little edible gold glitter, out turned out pretty special. 🙂
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My garden in bloom

Welcome to a sample of glorious blooms from my garden!

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I’ve had the most magnificent poppies this year, they self seed and scatter themselves across the garden. I adore poppies, they’re so beautiful.

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My only yellow rose ‘Kabuki’

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A gorgeous purple rose ‘Lady X’

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White irises, French lavender, and white daisies

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Tonks loves sunning herself in the garden.

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Pink hollyhocks

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Nasturtiums and pansies

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Rose ‘Olympia’ I think

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Rose ‘Mister Lincoln’

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Beautiful geranium

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Lemon thyme in bloom

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Red calla lily

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Nasturtiums

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Rose ‘Black Beauty’ – my absolute favourite!

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Rose ‘Traviata’

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Gorgeous ‘Black Widow’ daisy

I love my garden. It’s so peaceful. I’ve lost a couple of roses to a nasty virus and will replace them next winter. A few have yet to bloom this year, such as Lady Phelia. I’m planning to buy anemones and more irises next year, and I’m looking forward to seeing the frangipani finally get big enough to bloom… There always something to look forward to in a garden, always something that carries you into the future.

In other wonderful news, my eye sight has finally cleared up enough that I can read again. I think the past week was the longest break from reading I’ve done since I was a kid! I usually read every day and I’m much happier for it. I’ve dug out some Terry Pratchett which is suiting me perfectly. Things are looking up!

Today is a very busy day, I’m working as a face painter at one gig all day and another that’s expected to be very busy all evening. I’m really nervous about how I hold up – wish me luck!

Baby Steps

Oh gosh, today I have actually been well enough to eat breakfast in my garden, and do some work on my computer! Which is incredibly fortunate, as I’m booked into two long gigs tomorrow for work. I’ve been updating my website, sending out invoices, sending in homework for college, and catching up on emails. I’m so excited! I know it sounds crazy to everyone who hates their job and being stuck in 9-5, but I’m so, so excited to be well enough even to get a little bit back into work! 🙂

Determination

Oh dear lord, that was a hard week! 8 days post op and I’m still having trouble with the pain, but my headspace is markedly better. It’s been so demoralising to be so sick and in such pain. 😦 littered by all the ideas that haven’t worked, sometimes my future seems very bleak. I don’t want to live on support for the rest of my life but chronic illness just tramples everything I set up. So, I’m working on not failing my art classes at college, and I’ve been distracting myself by looking at pretty things on Etsy. It’s been inspiring. 🙂 I love sculpting my pendants and I’m really enjoying working in the smaller scale, which is good considering my studio space is very small at the moment.

I’ve also been lucky enough to arrange visitors every day, which has been really helpful, ditto actually getting out of the house here and there. Today I’m really excited about going to visit Sound Minds, the local hearing voices group. I haven’t seen them in ages and we set this date months ago. I’m bringing a very sad anime called The Children Who Chase Lost Voices to watch. They’re bringing ice cream. 🙂 I’m going to get through this!

Chronic pain

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This is the chair where I’ve been living since Thursday. We go back a few years. I got it from eBay for $30 a number of years ago, and it’s been dragged through house moves and stashed during homelessness and followed me around all over Adelaide. A comfortable chair is desperately important when you have a chronic pain condition. Doubly so because with the fibromyalgia I have lost the ability to regulate my body temperature (this is common with many chronic conditions such as MS). This impacts me by causing deep pain in cold weather and heat stroke in warm weather. When I’m particularly unwell I move into heatstroke when the temperature is over 30, which happens an awful lot in South Australia. Many of the places I’ve stayed in only have air conditioning in the lounge, so if I want to stay out of hospital I have to sleep there through heatwaves. A comfortable chair that opens nearly flat is essential. I’ll still be horrendously unwell with fever, shakes, vomiting, weakness and so on, but under a wet sheet and if I can keep some fluids down it means managing at home which is generally much kinder to me.

I’m currently bunking in my chair because I have to sleep with my head elevated or the pressure in my sinuses gets intense and makes the pain worse, and I also have more problems with bleeding. It’s on its very last legs though, one arm has actually fallen off and is only held on by the fabric. It groans and creaks and is very difficult to put up or down… I’m half convinced that one night soon it will simply collapse under me and skewer me on terrifying springs and coils and inner workings…

I’m struggling to manage the post op pain. This morning when I found myself in tears despite ice packs and a slushie and ibuprofen, I relented and took 3 mg of codeine. It’s been enough to take the edge off and so far no hallucinations so my liver must be hanging in there.

I’m so aware of the veil of civilisation that buffers me from the anguish of my conditions. How fortunate I am to have a soft chair and a padded mattress and access to surgery and pain relief of sorts. Born into a poor country or an earlier time I would simply be a statistic, chronically ill, completely incapacitated by pain, finally killed by infection. Here and now, as deeply frustrated as I am by my limitations, I’m alive. I’m able to put some things between myself and agony, to stuff a wool lined chair and a box of antibiotics between me and the void. My life is full of relationships and books and art and using what I have to try and make the world a better place. I’m connected to my community, and I have a sense of the future. There’s so many other timelines where Sarah doesn’t make it this far. She kills herself at 10, or in a suicide pact at 19, or overwhelmed by intense dissociation, disability and loneliness at 23.
I’m still here at 31, trying to figure out how to be a good Mum with my disabilities, a loving partner, a loyal friend, an artist. My world has stopped completely while I’m so sick, I can’t manage my business or work on my assignments or visit my friends or clean my house. I live in this chair, blessed by visitors and the kindness of friends and family, utterly dependant and mostly helpless. But it is not meaningless. It is not about the limitations. I love and am loved. I’m touched by fire, kissed by darkness. Pain weaves itself through my life with the darkest of leaden threads and the brightest of red screams. I’ve also known ecstasy, wept with joy, been given gifts I can’t possibly repay, known the passion of laying with a woman who loves me, and the simple contentment of holding a child who feels safe in my arms. It’s been a full life, and I value it. Pain takes a lot away but it doesn’t take everything. It exists alongside quiet contemplation and the heights and the wilds and the little pleasures. It can be part of a deep experience of life.

I’m really good at moving house

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Right? Obviously. One does however, downsize collections when trying to move a girlfriend, her cat, and hopefully a baby into one’s two bedroom unit. I’m making great progress, this is what I’ve culled so far:
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Rose for her part is trying to bring with her an additional two cat trees (I’ve already got her largest one here; apparently cats need a climbing tree each), a massive 8 seater couch, and a really impressive 12 seater dining table set in solid wood with rainbow coloured chairs.

Yep, this is all going to work fine.

Phobias ain’t phobias hey

Post op pain is a bitch. The ENT was kind enough to warn me that the procedures I’ve had done tend do two pain spikes, around days 3 and 7. Forwarned is forearmed, it helps a lot if you know to expect it and aren’t panicking that something has gone wrong. Mornings and late night are my worst times, which is usually the case for any of my conditions. Peak functioning and lowest pain is afternoons, best time for visitors, appointments, eating, and uncomfortable procedures. I’m have to drown myself on a regular basis with salt gargles, sinus rinses, and sinus sprays. This is the ickiest post op I’ve ever done, I spit blood and drip pus and generally ooze. It’s truly delightful.

I’m concentrating on staying out of trauma memories as much as I can. The difference when they’re triggered is huge, my whole perspective shifts and I feel physical pain more keenly through the lens of helpless misery. I also struggle with body memories such as feeling drips and needle pain that isn’t current, I radiate distress so people are stressed and alarmed around me, and I can’t access most of my skills to manage the situation because I’m so overwhelmed by emotional pain. Humour is currently my ally! Nothing breaks the state more effectively at the moment. As I deliberately look for something absurd to focus on, I can feel myself back swimming away from a dark vortex, and color returns to the world. I don’t understand it all yet but I’m trying to pay attention and not the details so I can unpick it later because there’s something very powerful in this.

My capacity to manage the needle phobia has run out for now, sadly. This op was my first time using fentonil for pain relief, and I should be getting as blood test done to see how my liver coped with it. Unfortunately the hospital needed my bed and moved me on without follow up, so yesterday Rose took me to my GP clinic. I can be really difficult to draw blood from, phobia aside my veins are good at hiding. After several harrowing minutes on each arm the GP gave up and I’ll have to drink lots and try again on Monday. Unfortunately this means we don’t know how my liver is going so taking any codine is an unknown risk. Hence high pain levels. The techniques I used to manage the drips in hospital just didn’t have traction, like they hadn’t recharged. My hands dripped with sweat and I shook. But it was brief (ish) and I recovered pretty quickly.

When I’m back on my feet I’m going to a hypnotherapist to try and make some sense of this. There’s a lot of needles in my future! On the plus side, the progress I have made will give up somewhere to start I think. I had a really, really bad reaction to a blood test as month ago and clicked that I don’t think I do have a true phobia, rather blood tests and needles seem to trigger a massive trauma reaction complete with flashbacks. That might explain why the phobia approaches haven’t been working for me. In hospital I used visualisations based on attachment needs to great effect, and found that whenever pain spiked I could concentrate and determine what were current sensations and what were memories to be brushed away.

Anyway. So yeah, stuff. I’m taking notes and I’ll follow up later. For now I’m distracting myself with a Buffy marathon and stopping my jaw seizing by chewing licorice bullets. Tonks is being a crazy moth hunter and stalking the unit with gusto. Zoe is a total couch potato who will snuggle with any discarded clothes, socks, or, if she can find him first, my stuffed lion toy. Good company!

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Pain, & truth, & holding onto the stories that heal

I don’t much appreciate the hedgehog that’s living in my throat, and whoever sneaks in while I’m sleeping to stuff skewers in my ears and glue in my sinuses is not on my Christmas card list. Ah, post op, that unique combination of pain, boredom, and day TV. I’ve still got laryngitis which fortunately Rose thinks sounds sexy. I’m sure that helps with the regular top up of slushes!

Have an out of sequence blog post I wrote before going in to hospital. I’m not coherent enough to edit so I take little responsibility for the content.

I’ve had some lovely responses to my recent post Fear, grief, & chronic illness, telling me that other people too, don’t always find a positive approach helpful, that letting their pain speak limits its destructiveness, or that hearing my own vulnerability is in some helpful. I so needed to hear that.

I try to keep this blog as real as possible and sometimes that feels like an endless task of painting pictures of myself and the way I see the world, then pulling them down again to paint another one that’s more complex or shows something different… and I feel this suffocating pressure to only show the successes and the positive, or only share the pain after it’s been digested and finished with and turned into something palatable… it feels both incredibly vulnerable and somehow deeply urgent to defy these pressures, like fighting upwards through water to get to air where I can breathe again. But the water constantly rises and the struggle is often present for me. I don’t know if that’s a function of my culture, of the way social media works, or of the mental health culture… perhaps it’s a little of all three?

Certainly we fear pain because we’ve turned intense pain, even grief, into mental illness, which means you are not well and should do things to become more well. Intense pain is at times necessary, needed, appropriate. A rational and human response to life. Add to this the pressure of peer work where you are supposed to show that you are now ‘well’ and provide hope for others by successfully remaining well. Social media can be a fantastic vessel for connection, but it also comes with pressures and vulnerabilities. People sculpt their online image with the attention of a company to their brand. They live in fear of the enthusiastic judgements and criticisms of public life, and they try to show their best side and most successful parts of life. The reality of their self and life becomes increasingly divorced from their public image. Often they police other’s sharing also, shaming those who express hurt, confusion, loss, or other ‘private’ emotions and experiences. This is not to suggest that people who prefer not to share deeply personal things or distress on social media are wrong or deceptive, merely that people draw the lines between public identity and private self in different places, and that a competitive culture of presenting a successful public self can be difficult to navigate. The lines between authenticity, duplicity, intimacy, and privacy can be a challenge to determine. Ultimately, most of us want a sense of connection but fear of judgement and hope for respect and admiration can be big obstacles.

Back to navigating pain. It’s not a complicated concept – go down into the pain and hear what you need and do it, and it will ease. And yet I find myself over and over again losing this approach, forgetting that it works for me, and I never hear it from anyone else. When I’m struggling responses range from the positive thinking to the hang in there, and there’s nothing wrong with that – people share what works for them, or what they think may help. But I never hear – go deeper into the pain, stop avoiding it, downplaying it, ignoring it. It’s real, it counts, it needs attending to. Surrender to it, and it will pass through you and ease. Over and over again I stumble onto the discovery that by letting go from the cliff I’m hanging from, I don’t die, and the world doesn’t end. I fall into it and it hurts and I come through it. I still haven’t found any way of fixing this knowledge into my mind or life.

I think this one of the biggest challenges of having a belief that doesn’t have a lot of cultural support. Sometimes the process of undoing one belief and building a new one feels like I’m deprogramming from a cult while I’m living in the next town over. It’s really hard, and there’s plenty of triggers around that reset my old beliefs so I have to wrestle out of them all over again. I think anyone that’s come through any kind of abuse, particularly entrenched in the local culture (school, family, church, club) and minimized, struggles with this vulnerability. You are given stories to understand yourself and your world that do you harm, but that on a deep level you continue to believe and fear may be true, even when you’ve decided that other stories are more accurate. Contact with these old stories (being molested isn’t ‘really’ sexual abuse, kids only cut themselves for attention, you’re a drama queen, you’ll never amount to anything, all mothers adore and do right by their children) can either trigger a major response – kind of like an immune response, or sneak in under your guard without you noticing. In the major response, you encounter a foreign story and you are half infected by it and half fighting it off. The more vulnerable you are to infection, the more dramatically you fight, and the more internal struggle you experience! The other option is much more subtle, a slow insidious poisoning where the story seeps in and takes hold and becomes your own without you noticing or putting up any kind of fight. Weeks or months later you find you’ve taken on their perspectives “I’m useless and lazy and never try hard enough” or internalised their ideas “I’m only bulimic, if I was really dealing with an eating disorder I would be anorexic” and are starting to live from them as if you believe them.

It’s so hard! It’s made even harder if you have little support for your new stories, if you are in regular contact with people who believe and push the old stories onto you, and if they have any kind of power or authority over you. Other things that can make it harder to keep your own beliefs is if you don’t really believe your new ones (eg. trying to use over the top positive affirmations “Every day, in every way I am getting better and better” can be a much more vulnerable position because the new stories are so unrealistic and unsophisticated with no room for back steps or grace for human flaws or bad days, that every day life can constantly provide you with enough evidence that your stories are not true that you are forced either into constant internal conflict or severe denial to maintain them). Self loathing and self doubt, which obviously spring from particular stories about yourself can also make this process more difficult as they naturally undermine all your other beliefs and endeavours and make you prone to hearing bad things about yourself as true and good things about yourself as untrue. A lack of emotional skin, which can be about trauma but is also often related to social power – the less we have, the more important others opinions become for our survival, also increases our vulnerabilities to living according to other people’s stories, and often these stories suit the other people and not ourselves.

This is where I come back to authenticity, and to the idea of truth. Truth is often complex, and we like to boil it down. We try to sum up our childhood, our relationships, people we’ve known, as if we could weigh the good and bad on scales and come to a definitive number. The reality is that this process obliterates and obscures truth. Finding truth is not about boiling down but about opening up. It doesn’t sum up all the complexity in a neat conclusion, it lays each piece next to each other, side by side, not over lapping. A simple example: my childhood was terribly painful. I was devastatingly lonely, witnessed violence and abuse, was traumatised by death and loss, suffered chronic suicidal impulses from the age of 10, and struggled with nightmares, self hate, guilt, grief, sexuality, gender identity issues, bullying, undiagnosed multiplicity, severe dissociation, and major trauma. That’s one story. It’s all true, all verifiable. My childhood was also wonderful. I was given free reign to be incredibly creative and adventurous, taught skills and resilience, offered freedom to explore rivers, climb trees, sleep out on the roof, light and cook my own meals on fires, wear wild clothes, explore artistic pursuits. I saw deserts and mountains, swam in icy snowmelt rivers, watched a meteorite shower, built a hay bale cubbyhouse to sleep in, stayed up late to watch lightning, nursed an injured baby goose for months in the pocket of an apron, ride motorbikes and go karts and beach buggies, go rock climbing and abseiling outback, bucketed hot water into a bathtub once used for stock feed in a paddock, and had a hot bath outdoors in the rain with my sister. This is also all true. People often try to ‘sum it out’ as if the good might outweigh the bad or vice versa. I’ve found that when one story obscures the other, I lose some important truth. It’s not or, it’s and. My childhood was wonderful and painful. It’s headbending, but its a key skill to be able to tolerate the tension of more complex stories like this, because single-note stories, black and white stories, often distort and conceal some truth that we need. There’s freedom in the contradictions.

Hanging onto them, even when they’re as accurate as we can craft them, as undelusional, as informed, as balanced as we can manage, can still be tough. This is where good therapy can build you up and be another voice of support (“I know your father says that you’re weak for being raped, but I also know that’s not what you believe and not how you feel about other people who’ve been raped”), or conversely where bad therapy can take your head apart (“You are manipulative and faking your issues for attention”). I also use a number of other sources of inspiration. My favourite artists adorn my walls, I reread my favourite books every year and own the movies that inspire me and inform the stories I choose to tell about myself and my life. For me, it’s about poetry, about heroes like Cyrano de Bergerac, Bradbury, Amanda Palmer, about the love of children, about all the things we use to anchor us in our beliefs and weather the tides that pull us off course and plant traps in our minds.

I’m alive

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Rose has just left for the night. I’ve come through the surgery! My lovely visitors have bought beautiful gifts and made me smile far too much for someone with stitches in their face. The pain meds have stopped working very well which probably means my liver has had enough for now but it’s tolerable. I’m full of lines which keep blocking up but a new approach to the needle phobia is keeping things reasonably quiet inside. All in all, I’ve felt better, but I’ve also felt a lot worse.

Buoyed and touched and grateful for all the mad lovely people in my life wishing me well or reaching out to support Rose (who has been AMAZING). Rocking the orange eyebrows and tampon-on-face/world’s weirdest mustache.

Off to surgery!

I’m off to hospital at 9am tomorrow morning, for several hours of surgery on my sinuses and removing what’s regrown of my tonsils. At least, that’s the story at the moment. Apparently some people are being cancelled even after waiting in the hospital in a gown and slippers for several hours, so I won’t really know it’s going ahead until I’m wheeled into theatre.

I’m nervous. We’ve got the best ‘coping in hospitals’ part around, ready. Anaesthetics scare us, always afraid one day we won’t wake up. Resisting the urge to write wills and try to have all Christmas presents prepared, just in case…

I’ve scheduled a few posts for the week here, so there’ll be content happening, but maybe not updates for a little while.

I keep remembering things I meant to do before hand. 😦 I have been feeling a bit better today, and I’ve been able to sweep, mop, clean the bathroom and toilet, and finish some hand made gifts. I started the day playing with Tonks in bed, this is her favourite toy, it’s a tiny turkey on a string. Rose often does this, and it’s a cool idea. Ever since doing some intense processing around attachment, things have improved and I’m connected to and enjoying the company of my pets at last. 🙂

2014-10-07 08.51.45-1There’s so much I want to do. Art projects are calling to me and the garden needs some fertiliser and I want to finish a business project and the essay that’s due next week… and I want to snuggle up in bed with Rose and talk about our family and tell her how much I love and admire her and how glad I am to be with her.

Hope I’m home again soon!

 

 

Fear, grief, & chronic illness

I’m scared. I’m really sick, again, or still, depending on where we draw the increasingly fuzzy lines between one sinus infection and the next. The doctor I saw today confirmed I have laryngitis as well, and was worried I will not be well enough for my scheduled surgery this Wednesday. We’ve added steroids to the antibiotics and prescription for rest and fluids. With a present infection I’m also running a much greater chance of post op infection. I’ve experienced that before, severe secondary infection after having my tonsils removed at 10. I’d prefer not to do a repeat!

It’s hard to keep my spirits up. This week was set aside to get everything ready for my recovery period post surgery. I wanted to mop and clean and make sure there was blended food in the fridge and take as much of the load off Rose as I could. I also wanted to get my library books back, and finalise the essay and tutorial due next term in case recovery knocks me off my feet for longer than expected… So much for those plans.

I’m in a vulnerable place with my business. I’ve just emptied out the beautiful studio we had to close. I let a good friend down. I never even put a launch together for it. Everyone was really enthusiastic about it, but not enough to visit. I was sick and busy. Another learning curve, another failure. Something else to keep me up at nights. I’m so sick all the time. How am I ever going to make any business work? I keep trying. I’m working so hard and it’s just not enough. ‘I hate myself’ is a constant quiet drone in my head. There’s always so much fodder for it. There’s too much against me.

I’ve added mental health to all my promotional material but not had a chance to launch that side of the business yet to generate some work. In the meantime, my face painting business which was getting really busy has gone frighteningly quiet. The booked and cancelled surgeries are costing me work with long term clients, my bread and butter relationships. And maybe I’ve made a terrible mistake and people are too frightened by the new marketing to hire me. It’s too early to tell what’s costing me the most, I have to wait for surgery to be done then reassess, because the illness and hospital will keep destroying anything I set up in the meantime. A small business like mine is so vulnerable to any perception of unreliability. I’m so replaceable. My sickness is tearing apart everything I build.

So, hopefully, after I recover, I’ll find that place of hope again and keep building, and something worthwhile will come from all this hard work and heartache. And if I keep being sick, I’ll have to change it all again. Move to product creation instead of service delivery, something I can do even if my health keeps crashing. I’m so tired and so discouraged. 😦 I’m doing everything right and it’s not enough. If I could just disentangle the grief and self hate and overwhelming sense of failure and the gap maybe then I could breathe.

This really hurts. It’s like being down the bottom of a deep pit. It’s so painfully lonely. I know other people handle their pits with positivity, or that other people have deeper pits, but somewhere in claiming the right to my own pain and fear, to name it and call it what it is, to express some of the bitter disappointment at how things work out, I find strength. It’s my story. I don’t need to compare it to anyone else’s, I don’t need to win some ‘tragedy of the year’ competition to feel hurt, I don’t need to handle it in some publicly approved way to have the right to be hurting in public or to reach out.

The funny is, when I let myself own my pain, the loneliness eases a little. The gap becomes a thing I can navigate again. I can find humour, wear the loss a little more lightly, present the face of disability the world tolerates better – articulate, insightful, optimistic, discrete. Carve myself some space to grieve. There’s so much grieving in sickness.