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.

Booked for surgery

Yesterday had a bit of shock in it, I went off to see a sinus specialist and I’ve been booked in for surgery! Sometime in the next three months the hospital will call and arrange the date. That does make it quite difficult to plan for. I’ll be having septoplasty, ethmoidectomy, antrostomy, and tonsillectomy. The first three are surgery on the structures of my nose, hoping to improve the functioning of my sinuses. The last I’ve already had as a child due to severe and chronic tonsillitis, but enough tissue has regrown that I’m getting bouts of it again frequently.

I wake up most mornings feeling like someone has punched me in the face. I’ve never had troubles with my sinuses until 2 years ago, when severe facial pain was misdiagnosed as TMJD (pain due to tightness in the muscles of my jaw) – which I also suffer from chronically. Unfortunately, in that case, I actually had an infected tooth that had developed into an abscess. The infection went unchecked for long enough that it breached through my gums into my sinuses and caused a severe sinus infection. I was very, very sick and in terrible pain! Fortunately my doctor became concerned and ordered a cat scan which revealed the problem. I went onto steroids and antibiotics for the infections and had a root canal on the dead tooth.

One year later and I’m getting constant sinus infections. That winter my immune system crashes and I develop along with sinusitis, laryngitis, tonsillitis, bronchitis, and severe inner infections in both ears. I am profoundly ill for three months, and in recovery for longer.

Two years on and I’m suffering severe anaemia due to unmanaged endometriosis, chronic facial pain, and constant low grade sinus infections with the occasional flare into a full blown severe infection needing antibiotics. The structure of my sinuses has been altered so they no longer drain, despite treatment with steroid sprays we can’t make the chronically inflamed and swollen drainage do it’s old job. So sinus fluid stays trapped in my face, as stagnant ponds ready to host the next infection.

Fibromyalgia for me has brought with it not only a fragile liver that no longer processes many common medications I used to handle fine, it’s also shut down my mucous producing cells. This means things like – I don’t produce enough saliva, and without sufficient saliva to protect them, my teeth decay at many times the rate of most people. So there will be a lot more dental work and infections in my future. An average year for me has between 5 and 11 new caps and fillings applied to my teeth, under minimal anaesthetic. With this in mind and the potential for chronic tooth infections to be travelling into my sinuses, the specialist was unhappy about proceeding with any more conservative approach and booked the surgery on the spot. I’ve also been advised to avoid extraction of any top jaw teeth at all costs and continue to use root canals as the teeth die,as any extractions risk creating holes into my sinuses where infection can travel from my mouth.

I’m off tomorrow to a TMJD specialist dental surgeon to discuss the role that TMJD is playing in the chronic pain, and for a specialist opinion about shadows on my xrays that may be chronic infection at the roots of my teeth, or may be merely scar tissue from previous infections. Obviously you handle those situations quite differently, so it’s important to assess them correctly.

All very well and good, but the last times I’ve had minor surgeries, things have been pretty rough. One was the extraction of 5 teeth and a salivary biopsy. I wound up with no pain relief after 24 hours as I was psychotic as my liver began to break down. The pain was intense as stomach acids ate into the 6 wounds in my mouth, the vomiting caused by allergic reactions to the pain relief. I remember sobbing on the floor thinking that if childbirth was going to be worse than this, the vivid feeling of biting deeply into red hot coals, then I would never be able to be a Mum.

Another surgery was supposed to be day only but I wound up in hospital for a week with allergic reactions to the anaesthetics and everything else. It triggered a major fibro flare that saw me into a wheelchair for mobility for a long time.

So, I’m nervous! This could be great, I am very frustrated by being constantly sick and run down with chronic infections and pain. On the other hand, I am probably in for some pretty bad pain, allergic reactions, and possibly another med induced psychosis. The breezy 10 day recovery time suggested in the literature may extend considerably for me. And the whole hospital experience is one I find pretty traumatic.

The plan is to keep my inner kids away from the whole experience as much as possible as they’re scared. With the exception of the 12 year old who is the only one of us who handles hospitals. Rose will take a couple of days off work once we come home, and we’ll plan for the possibility of an extended hospital stay if it’s needed. Apart from that, mindfulness, being present, managing the anxiety around possibly getting very sick again, and spending time doing fun things with friends. Focusing on healthy eating and exercise with the idea that the better shape I’m in, the better I’ll bounce back from the surgery, and continuing with my business plans. I’m so lucky to have friends and family who care about me, it makes such a huge difference to handling scares. I won’t pretend I’m not spooked and in need of some extra love – cuddles from Rose, dinner with Mum, killed a lot of zombies with my sister last night (Left for Dead 2, best game ever!). But I’m also determined not to let anxiety cloud my days and steal my joy. Life is still good! Carpe diem. ūüôā

Health & pain

Rose and I are carefully putting some thought into our health, moving gently around mindfields of food issues and body image and social pressure. We are finding some things that are working for us without triggering bigger problems than they solve, which is saying something. ūüôā

So far, we’re eating a lot of rainbow salads and other good foods, without worrying about restricting anything. I don’t do well with restricting and am vulnerable to binge/starve behaviour. So this gentle approach is working well for me.

We’ve also started exercising regularly. Rose loves swimming and I’m finding, to my joy, that swimming seems to really suit me! I’ve swum a little over a kilometre last week without any significant increase in pain! The lack of load bearing on my joints seems to make a big difference. I love having an exercise buddy and I’m feeling excited about building my capacity and my fitness. I’m hoping to gently increase my quantity of exercise with swimming and walking Zoe.

Exercise is a tricky one for me, too much leaves me shattered with fatigue and pain. Too little reduces my muscles tone and slows my metabolism in ways that leave me sicker. This is a common dilemma for people with fibromyalgia and chronic fatigue.

It’s very important to me to maintain my happiness with my body, it’s taken me a long time to feel content and settled in my skin and I still have bad days at times. There’s no point in me being successful with a fitness goal only to have my brain collapse. My aim is some more energy and better conception/pregnancy.

Unfortunately the endometrioses seems to have returned and I’m once again very sick for days each month. This is forcing me to either return onto the meds, which are associated with slow but steady weight gain, or step up my plans for parenthood. I’m ambivalent and wrestling with the options. One possibility may be going back onto the meds with some dietary modifications to try and reduce their impact. It’s a hard call.

In the meantime, I’m enjoying all the extra swimming and hoping it will pay dividends in increased fitness and pain reduction if I pace it carefully. ūüôā

Making marks

I was really sick at at college on Monday. Shaky, exhausted, nauseated, and really struggling to focus. I didn’t get much sleep the night before, and my plans to park by the tram stop and get in that way didn’t work out because all the parks by the tram stop were very time limited and didn’t give me enough time to get in and back again. In Drawing class we were investigating different ways of making marks with willow and compressed charcoal. I really struggled to stay focused and keep getting teary and needing to slip away to cry. I hate not being well enough to enjoy college. My tutor at the end of the lesson asked me if I was bored and I’m glad he did because I was glad to clarify that I was just sick!

I kept trying to figure out what was making us so sick, (apart from the usual) and if it was a parts based thing and we could switch. Sometimes I felt better for a bit when music was playing but I couldn’t seem to stabilise and make anything work. I think I need to find out replace my MP3 player and eight that helps keep me anchored if that was the issue. In the end I just let it roll over me and did my best to get through the day. Sometimes taking the pressure off is the best you’re going to get.
image

It’s an interesting process to see how many limiting ideas I have about art, and how little I let myself experiment when I’m anxious about the cost of the materials. How every piece must be good enough to justify the time and money spent on creating it. It’s not surprising that I find myself blocked and shut down with these mindsets. I’m hopeful about clearing my head more so I can be more creative and explore my favourite materials.

These were some of the marks I made with this process that spoke to me:

image

image

image

image

image
Rose was wonderful she made me this great lunch, dropped me off and picked me up after college. I was fragile and distressed so she took me home and read Harry Potter to me until I slept.

Music is my drug of choice

Last night I went out to a new goth club. It was over 40C again here yesterday and I was bone tired, with that hot, angry restlessness that makes relaxing not just difficult but very unsatisfying. I met up with my shrink earlier in the week, who told me that I’m stressed and driven because I’m involved in so many ‘start up’ projects, all of which are high risk and take loads of work. She suggested that every project needs money and at least one partner to make it work without it killing me. I also met up with an amazing guy from Scotland, Ron Coleman, who said roughly the same thing but with a whole lot of practical suggestions and details about how the hell to do that. Damn exciting!

My shrink and I¬†also talked about¬†‘adult days’ which are days where I have to be responsible and run things. It’s not that great a way to describe them, since some of my adult parts are decidedly not useful on adult days (like me!)¬†and some child parts are, but it’s what¬†we’re working with at the moment. I wind up with too many of them. It becomes like a parent who never gets a break, stuck in parent mode 24/7 and starting to crash. I don’t get a lot of days off from this. Everything gets scheduled. The anxious driven-ness can turn even fun and play and friends into work, something¬†we have to do. There’s not a lot of room for going wild in any form.

Last night I went to a new goth club, and let a little bit loose. Many multiples will tell you that different parts handle things like alcohol differently. My system seems to have two settings – can’t handle it at all, no upside, no good feelings. The first drink makes legs prickle and any more make us sick. Or there’s me. I can’t seem to get drunk. I’m 30 (or at least, the body is) and I’ve never¬†been drunk. We’ve been psychotic. Or high from allergic reactions. But never just gone out and got a bit plastered. This irritates me. I pushed things a bit last night and found that I never seem to get to a place where I feel anything. I don’t get sad, or giggly, or feel more relaxed. I just drink things, which to me taste like cordials. To the rest of my system taste like kerosene, mainly. At some point, if I drink enough, I throw up. That’s so bloody disappointing. I’m sitting in a club, dressed up, that mix of hyped and insecure that’s just begging for some alcohol to wash away the sharp edges, and I’m waiting to feel something. Nothing kicks in. I find myself thinking wistfully of the last time we had a local anaesthetic at the dentist and took all evening to get our head screwed on straight again.

Then Nine Inch Nails comes on and lights a fire in my bones. I get up to dance next to a speaker pounding bass through my body¬†like an electric current, the air tastes of smoke machine and I’m shortly deaf in my right ear. And it feels fantastic.

I love the contrast between the expectation and the reality of places like this. There’s no Matrix style stripped back nightclub full of harsh and frightening people. There’s¬†young ones and oddballs and freaks having a good time in a safe place.¬†A few dancers have come from a fancy dress party. One is super friendly and still has green body paint in his eyebrow. We commiserate about how difficult the green is to wash off. Another is still wearing his Crocodile Dundee outfit. He is fearless and theatrically acts out each song. During Billy Idol’s White Wedding he’s on his knees proposing and bouncing himself off the floor with one hand. People laugh and smile at each other, close their eyes to dance. The room has no air conditioning and feels like a furnace. I’m sweating everywhere. Even my wrists are beading sweat to drip off my finger tips. We dance and escape to the air con downstairs or the crowded beer garden, then dance again. I can’t dance as much as I’d like, so I take photos and amuse myself by irritating people following me on twitter who are used to sensible, thoughtful tweets about mental health.

Weirdly, this morning, no hangover. I’m the brightest and most cheerful person in my house. Considering that most mornings we feel pretty crap, and some mornings we get a really bad fibromyalgia ‘hangover’, this is weird, nice, but frustrating. I’d swap in a heartbeat, it would be much better to have the kind where you have a decent night first and¬†no one to blame but yourself.

So, for now, I’m chalking that one up as a highly successful experiment and looking forward to more. Music makes me feel great. Alcohol is expensive and mostly irrelevant. I need better boots. ‘Not adult’ time is good for me. Cool bananas. I can work with that.

image

image

image

image

image

 

image

Punch drunk

Ever have those mornings where you wake and feel dazed, shuffle back into a life that seems to be a bad joke, a series of punchlines at your expense. There’s this sick feeling in your gut and an emptiness in your chest but in your head is a moving headache like a dog that can’t lie still, and an anxiety that’s kind of a high pitched whine in your ears. Everything that seemed easy a week ago is hard, your hands hurt, your eyes are not your eyes but some old gritty hand me downs from before colour was invented. Your knees ache.

The song in your heart is gone, there’s just a bucket of something unidentifiable that smells of dead herrings and an IOU from a¬†nightingale that’s flown south. The world is empty and pointless for you, amazing things are happening out there, brilliant conversations and intelligent people making art and changing the world. It’s all beyond you. You wake into the backwaters of cultural development, the Siberia of party invitations. The world expects you to attend anyway, and sends you final demands and tweets. I’m not at home, you say, I can’t come out to play. I’m a facsimile of me, you’ll be terribly disappointed. When¬†you open¬†your mouth, toads and tax forms fall out.¬†Your hands are sticks with no poetry left in them.¬†You must have left the plug out in the bed again and it all drained away while¬†you were¬†sleeping.

The world takes too much out of you, needs to much courage. All these things¬†you’re supposed to be doing weigh in on¬†you like snowfalls on the roof, like being asked to come outdoors into the blizzard and make the world warmer. You’ve two pieces of coal left in the burner, half a packet of porridge and a soggy onion.¬†You’re wearing socks on your hands and trying to listen to a radio that’s held together with duct tape. Keeping¬†your world running is taking everything¬†you have,¬†you can’t shovel through 10 feet of snow in front of your door and do anything about the blizzard.

There’s a desert in¬†your brain where no rain falls, no plant grows.¬†You would hate yourself if¬†you could find the energy. Under¬†your arm there’s this missing rib and the gap still aches.¬†Your eyes have seen the dust beneath the couch. Ever have those mornings?

… No, me neither.

Heatwave

We’re in a heatwave here, 5 days in a row at or over 40C. My place isn’t ideal for this, although I’m a lot luckier than some people. Spare a thought (and some change, or a cold drink) for all the people on the streets at the moment.

Fibromyalgia stuffs up my ability to regulate my body temperature and makes me vulnerable to hot and cold weather I used to simply enjoy or ignore. I get heat stroke very easily now. It makes weeks like this extra tough, I want to be able to keep working and functioning and really my top priority is staying well enough that I don’t need to go to hospital for hydration. I’ve had some very bad summers where heat stress stops me sleeping and brings on shakes, vomiting, and migraines.

So we’ve adapted the unit as much as possible before this hit. Zoe has her crate in the lounge with her own little fan. I’ve put up an extendable towel rail and pinned a curtain to it to keep cool air in the lounge room and stop it all dissapaiting into the dining room and kitchen. The west facing kitchen window is blocked with a silver foil car window shade. I’ve bought and badly installed a basic dripper system for my potted roses. It’s not pretty as it’s coiled around the pots and stuck down with silver gaffa tape, but it seems to be working. I have a fridge full of cold bottled water and salad ingredients. I keep the bath half full of cold water and get in it frequently. The massive fan on my bedroom wall helps a lot once you’ve got water on your body.

Zoe and Tonks are doing ok. Rose’s place doesn’t have good air con and her cat Baby has been losing condition lately, so we’ve relocated her to my sister’s place where she’s in the cool, hiding behind the couch, and hissing at Kiki. Rose is doing ok now that her cat is in a better place and eating and drinking again. So everyone’s okay.

I’m so depressed I can hardly function. I am supposed to finishing this backlog of admin and filing it with all the appropriate, terrifying organisations. I’m running out of time and it’s so overwhelming. I’ve spent the past couple of days in a teary misery of self loathing and nausea. I’m certain that once I’ve sorted all the figures out that I’ll owe money somewhere, partly because I’ve forgotten or misplaced paperwork showing where I’ve spent it, and partly because I was supposed to have organised all this paperwork before I started trading so I’d know how much to put aside each week, or at least been self disciplined enough to put some aside anyway to manage it. Having said that it’s not that I’ve been very frivolous, it’s hard to¬†second guess any of my decisions or purchases and see what I shouldn’t have done (or not done yet, maybe that’s more the case? Timing rather than choices?)¬†So my business working and being successful is actually just making me feel more scared and overwhelmed and like a failure for doing such a poor job of managing it. I hate being self employed sometimes. ūüė• Today I want to go back to every bright and cheerful person who ran the cert in home business I did last year and break one of their fingers for every time they said ‘It’s easy!’

It’s been a big week. I had a (great) final appointment with a counsellor, who I didn’t see very often but has been really helpful. I want to write a post about it when I can think straight again. I just found out a psychologist I started seeing so that I would have someone to talk to when the counselling finished up is retiring this year anyway. I’m so sad. There’s so much knowledge that I won’t be able to access when I get stuck and run out of resources. I was coping okay with the loss of the first one, but losing the second feels like more than I can handle dealing with at the moment.¬†I read some really distressing things in a parenting forum I was part of, where people with great intentions are encouraging practices for each other with their kids that are highly destructive. I left a warm but concerned reply, but those in an ‘expert’ role in the group encouraged parents with hysterically distraught children to keep doing what they’re doing. I¬†had a pretty strong¬†body reaction¬†when I read it. I don’t have enough head space to think any more about it or respond again but’s stayed in my mind and is very distressing.

I’ve navigated another psychotic episode and done really well but it’s still left me rattled and trying to figure out how to get ahead of them and stop them happening in the first place (if I can).¬†I’m finding the pull to make the kind of art where I don’t need¬†to consider¬†what¬†anyone else wants or feels (face/body painting is all commissioned work, a series of small commissions where¬†you try to gather¬†what they want or like and¬†make it¬†for them, and give them a good, fun, and respectful experience) is strong at the moment, it’s hard to focus on anything else. It’s hard to focus at all.¬†Until I have cleared this backlog of admin it’s frightening to be doing more work and adding to the weight of the problem. It’s hard to stay professional and engaged.

One of my bright ‘preparing for the heatwave’ ideas was to buy a bracket to wall mount my exciting new (well second hand, but a Christmas gift, so new to me) flatscreen TV. This turned out to take half of the day yesterday. It’s larger than my old one (well, longer, it’s much smaller in depth) and didn’t fit in the spot on the wall where the studs are to screw it into, without moving a dresser. Which meant moving a bookcase. Which meant a whole stack of stuff is now piled into my dining room, studio, and all over the lounge. My house went from being pretty organised and comfortable to half trashed, and I’m too wrecked to do anything about it. It took ages longer than I thought it would, and while it’s kind of been successful, the TV sinks to the left by about 15 degrees and we couldn’t figure out how to fix it. On the upside, the old TV took up about 1/4 of my lounge room so there’s so much more space in here now. The screen is big and pretty and I can’t wait to re watch all my old favourites on it again – Bladerunner night is definitely on the cards. On the downside my unit is a mess and you have to tilt your head to the left to watch TV.

Lots of my lovely friends know that I don’t handle the heat well and keep offering to be helpful but I am so stressed and confused and switch-y that co-ordinating anything, especially as it has to include Zoe (can’t leave her in the back yard in this weather) and preferably not involve me turning up to their place as an overwhelmed ten year old who sobs hysterically on their couch all day, is just beyond me.

I don’t have much in the way of perspective when the weather is like this, as you can see. The only thing I feel I’m doing well on any level at the moment is this blog. I don’t know why but for some reason I’ve been very inspired about writing it lately. I’ve also been getting some really wonderful feedback (most of which I am too overwhelmed to reply to) but it helps me feel that I’m doing something good in the world, getting something right. The blog is possibly going to be the first draft of a book, which is a very inspiring thought.

I’m going to pay my phone bill. And reply to a couple of urgent emails, even if just to say ‘I’m sick, sorry, I’ll get back to you”. And have another cold bath. And probably cry again. But there will be passionfruit and cold water. Hanging in there.

Everybody’s tired, Dave

(Red Dwalf, anyone?)¬†Rose is tired, lugging around a moon boot and crutches, I’m tired working a lot of hours and not getting enough down time, the weather is hot so even the pets and plants seem tired. We trekked off to have Rose’s ankle cat scanned today, a friend kindly came round and did our dishes as my birthday gift (I’ve been saving that coupon for awhile) we’re trying to figure out what we can do about the Christmas gift situation as Rose is broke and won’t be able to earn money until next year sometime when her foot starts cooperating again, and I bought some stone fruit from the local market, which was lunch.

Rose is currently trekking around the kitchen in her keenness to be useful and making dinner for tonight (roast) and soup for the next few days as it’s forecast to reach 40C here this week and during that weather I do not run the oven under any circumstances. I think she’s mad and keep trying to persuade her to put her moonboot back on (too hot and heavy) or use her crutches (hurting her underarms and really inconvenient) or let me help (…) but sometimes one just has to shut up and go blog instead of trying to be sensible.

We had a funny little moment a few days ago when the reality of weeks off work and needing help to do basic things like shower suddenly hit Rose like a bucket of cold water. She said to herself with some shock “Oh gawd, this means I’m going to have to be careful and think about everything I want to do in terms of how much energy it will take and how much pain it will cause!” I was driving at the time and just gripped the steering wheel a little tighter and smiled to myself. The penny dropped and she looked at me, we both laughed. I’ve had fibromyalgia, endometriosis and other chronic pain conditions for more than 10 years now. It’s rare for me to not be in pain already when I wake up in the morning and for pain not be present, significantly, when I go to bed at night. Sickness and exhaustion are common parts of my life.

There’s a cool little explanation going around the net called The Spoon Theory. Trying to explain chronic pain and fatigue to people who have not been sick is always difficult. This approach is great, although to me it has one obvious limitation – that is the assumption that all of life is about giving, or using up, energy. I’ve spent a lot of time around people who think like this and for me, it doesn’t work.

People are not finite supplies of internal resources that recharge overnight only to be spent again every day. We are parts of much greater wholes, members in complex ecosystems where energy flows in and out and between every part. Some things take almost every bit of energy I have available to do, and yet in spending it, I am recharged. Not just resting, but meeting crucial needs for closeness, meaning, belonging, love. My volunteer work costs me much energy and yet gives me so much back. Relationships can be exhausting but are also a source of deep joy. Being involved, living, learning to re-interprete pain and exhaustion not as cruel bad luck, but as the cost of being alive, a price I willingly pay to live a life that is deep, passionate, abundant, and vital. Learning how to go gently and get out of the boom-crash cycle of spending energy into the red and making yourself constantly sick is incredibly valuable. But beyond that, conservation becomes miserly. Pain is part of being alive. Spend your spoons wisely yes, but do spend them! Be part of things that give you spoons back.

Ear Lizard week

It’s been a long week. I took Rose back to the hospital earlier for more xrays, this time they showed a small break and loose bone fragment. It was all pretty rushed and not exactly thorough so we followed up with her gp the next day and got some better pain relief (for her) and a referral for a cat scan next week.

I’m really tired, far more than I expected to be. I suspected a mild kidney infection but tests say no, it’s just fibro putting the boot in. It’s a handful trying to finish Christmas plans, keep work arrangements, and pick up the extra work of household chores and care for Rose. I was hoping to put up my tree and do some Christmas cooking but I’m trying to keep the pets and us fed, get the dishes done and find time when Zoe is indoors to hang a load of washing. A shower would be nice too. I have no idea what is going on with my gift plans, I just keep buying things and shoving them in a box in my wardrobe. I probably have 17 gifts for one person and nothing for anyone else. I certainly don’t have any chocolate. I usually like this time of year. Ah well.

Keep thinking what this will be like to deal with with a baby too, that’s a depressing thought. Can’t find time to blog or journal, snatching minutes to read before bed, pretty chronic pain and sleep deprivation, and carefully balanced plans where things get really difficult if the dishes don’t get done on time because the next 5 days are busy with other important things and now we’re all eating off paper plates and using the camping cutlery.

And just to illustrate the point that is hazily surfacing through this ramble of a post: ‘life is weird’, have a photo of an ‘ear lizard’ I painted on a kid recently. It was the kids request. No, I don’t know what an ear lizard is either.

image

Merry Christmas everyone.

Fibro hangovers

Days like this are blah. I feel like I was up most of the night drinking and dancing. I was in fact, painting kids faces at Adelaide Zoo, then hanging around with some friends in my dragon onesie. Not a drop of alcohol has been imbibed by me this week, yet this morning I wake with dry mouth, furry tongue, headache, heavy limbs, and bad body pain. Fibromyalgia can give you hangovers for parties you didn’t go to. I feel awful and I have admin already overdue that needs attending to. On the upside, with some ibuprofen, time in bed, and lots of water I’ll bounce back okay. Looking forward to a celebratory dinner tonight with family and friends. Dimly aware that the rest of the world is off doing things and being productive. It’s a beautiful day out there, I wish I had a bed in the yard still I could lie on and nap in the sunshine. I’m drugged with phenergan and drowsy with bad dreams. Sometimes the kitten comes and sleeps next to me.¬† Life will just have to go on without me for a bit. I’ll catch up soon.

I got a stack of medical test results back recently which are mostly good expert that I’m running extremely low on iron and vit D, which my gp reckons explains the dizzy nausea episodes I was getting, and possibly some of the worsened joint and muscle pain too. Hopefully with some supplements and more red meat in my diet things will improve.

Ah well. I’ve been working hard lately. I’m proud of myself.

Thinking of a future with a disability

Today, I stayed in bed from midnight until 4pm, resting, sleeping, and reading. Rose came home to me after her night shift and it was lovely to have her company, sleeping beside me. She turned up with a bag of groceries and chocolate milk, and hugs for her very tired and overwrought girlfriend. Then friends came round for dinner and brought a big bowl of home made pasta with them. Rose made a salad, and I washed all the dishes from the week and made homemade soft serve icecream. We played cards. By the end of the evening, I felt almost human. It’s so regenerating to be the recipient of such kindness. Another friend gave me a massage earlier in the week, and I was fortunate enough to be given a bunch of free tickets to go and see Cavalia, an amazing acrobatic show with horses, so I went with a bunch of friends and family. It’s delightful to be able to be generous with good fortune, and to have such caring friends who are likewise generous with their time and love.

I’m also reminded that pain management needs to be more of a priority for me with me work. The extra work I’ve taken on lately has been wonderful, but I’m not coping well with the pain it creates. High levels of constant pain wear me down emotionally, I become easily distressed, teary, anxious, and depressed. I need to be more assertive about predicting it and doing things to manage it.

I’ve been thinking a lot lately about having fibromyalgia and how it impacts my life. Weeks like this one, I realise that I am not like other face painters or small business people. I have to close bookings when I’ve reached a certain number of bookings in a week, not because I’ve run out of time, but because I’ve reached my limit of how many hours I can paint and still manage my pain and energy levels. This is hard to face. I’m a small business owner and artist – with a disability. I need to remember this and work around it, not throw myself against the glass wall of my own limitations and leave myself so ruined, and so vulnerable to other people’s misperceptions.

Likewise, I’ve been giving a lot of thought to what kind of mother I would be. There’s many things from my childhood I don’t want to replicate for my kinds – chronic loneliness and alienation, unaddressed trauma, shame… but there are many things I loved and do want to bring to life for my kids. Amazing birthday parties, brilliant creative play, superb organisation skills, learning to care for our home and belongings so we didn’t live in the kind of broken down home that so many other low income children do… there’s a wonderful legacy of fairness and play and adventure I want my kids to experience.

And I have fibro. I can’t live up to it. I can’t be the kind of mum I want to be, put in those hours, with that dedication and passion and effort. I’m grieving this. I have to find a new idea of success, new dreams about what being a great mum might look like for me. I need to reach out to other members of the disability community who are parents and find a path I can be excited about. I need to write an exciting and hopeful future around my limitations.

This is a big shift from my previous ideas that I would keep looking after my health until it was better, get full time work, build some strong financial foundations, and then have kids. I might not ever be able to work full time. I need to work out what being a mum would look like when I’m living in public housing, on welfare, with chronic illnesses, and how to engage that dream in a way that makes the most of what I do have, of my skills and passions and wonderful friends, and limits the bite of poverty, sickness, homophobia, and all the other risk factors I can’t change.

So, tonight, I’ve been thoroughly loved up by some of my very important people. My body is still tired and sore, but my head is clear, so I’ve used the time this evening to tackle another box of paperwork:
image

I’ve recycled an entire box of stuff I don’t need anymore;
image

packed another box with things that just need to be filed, and created a small stash of things that need urgent attention. I’m very proud of myself. And now, for bed, to sleep, perchance to dream.

See more like this:

I need a drink

Today was hard. I want to use a lot of swear words but I’m being censored internally. Working a lot lately, trying to keep up with some big new work opportunities, that generate a hell of a lot of admin for us. So my life is currently gigs and admin with the occasional housework and sleep. Nowhere near enough sleep.

If we have the excitable ones out it works okay, they thrive under pressure and work like dogs. Today sucked however, it was freezing cold and wet. It was supposed to get warm and sunny but didn’t. We left our jumper home, so slowly chilled through the day. This is not at all good for pain levels with the fibromyalgia. Due to the weather there was hardly any work, which is emotionally exhausting. You’re on display the whole time and have to stay cheerful and friendly, even if the occasional nutty person treats you like scum (why is it some people think face paint should always be free?). There’s always some wonderful people which is usually enough to make the day worthwhile. But a 5 hour shift, very cold, in a lot of pain, for very little pay, and an hour and a half driving either side of it after a previous two days of work, pain, and sleep deprivation was too much today.

I also got into a conversation with someone who thinks face painting is easy money, and someone else was clearly a bit confused that I find the drive home really hard. It is so depressing some days to deal with the chronic pain and invisible disability, to be held to standards I can’t meet. More than depressing sometimes, triggering. We were rocking quietly the whole afternoon, a major warning sign, we’ve learned the hard way.

Between lots of coffee and more food than I wanted to eat I was able to get back down the freeway without having to slap myself on the face to stay awake like I had to the previous week. I got to Rose’s place where she was just waking up after her night shift to put on some dinner. We crashed into a shaking, weeping, exhausted, nauseated mess. It isn’t helping that Rose and I are both working hard and at different hours so most of the time we spend together one or both of us are trashed and sleeping on a couch. Dinner was beautiful, I’m so lucky to have a girlfriend who’s an amazing cook. Rose napped and I watched the box feeling like I had a javelin in my back. Crashed into a weepy conversation which was badly timed and going nowhere good, switched, played around a bit before Rose went off to work, then went hunting an open bottle shop because sometimes too much sobriety is bad for your health.

Adelaide is lousy for that, at only 10pm nothing was open except for a bottle shop in North Adelaide, which turned out to also be shut but hadn’t bothered to update it’s hours online. So, I came home with 4 litres of milk and a bag of salt and vinegar chips, which wasn’t what I had in mind. At home I raided my liquor supply, which considering my hopeless liver severely restricts my drink intake, is in pretty good shape, and decided the evening would look better through the bottom of a large glass of black sambuca and ice.

I was right. I’m now in bed, wearing an old jumper of Rose’s, with a kitten, watching Dirty Harry. I feel pissed off and sore, but a hell of a lot more stable. Nobody will be cutting tonight. Boots firmly on the ground.

Some nights you weep

Yesterday I got just enough sleep (4 hours) to pull off my day of work at Monarto Zoo, but not enough to feel okay. I was able to get to sleep much earlier than my current usual time of 6am with the aid of warm milk, growing chronic sleep deprivation, and Rose kindly reading to me over the phone (which seems to be the only reliable sleep aid I’ve found so far). Sadly I then woke, entirely unnecessarily at 6am. Zoe was then very painful and I nearly strangled her. The morning was spent sobbing in bed in frustration as the lack of sleep set off severe fibro muscle pain and nausea.

My sister was sleeping over and came in, our two kittens trailing her to romp on the bed. Funny how just the night before I’d been discussing with a friend the different way people cope with someone not feeling okay, and how it often seems to be the way you try and do something like be companionable or cheer them up that matters most to whether it feels warm or dismissive.

There’s been so much going on for me in the past few weeks. A funeral, a range of new work, Rose is having a shift change at her work that will hopefully be much better in the long run but messes up my calender in the short run as I was booking things in around shifts that wont be happening anymore. Painful stress in some very close friendships, difficulties with Bridges and DI things. I’m doing my best to give all these areas the time and attention they so deserve, and to bring my very best skills and patience and courage to them. I’m very tired, and doing my best to be ethical and to be an advocate for myself. Sometimes when relationships break down there is this strange and painful space where for some reason, caring about it and being hurt about it is not seen as evidence you cared and were invested, but is construed as you being overly emotional and difficult. This morning I had run out of the ability to think over all these hurdles and maintain an even emotional keel. There is at times, just a keening pain, and it hurts so deeply that it’s impossible to imagine that life can be wonderful also. When it comes over us it takes away everything else and leaves me breathless and suicidal.

It was good to have a space where I didn’t have to be okay or have an adult, intellectual perspective. To reach out and just lay a hand on my sisters shoulder and feel the warm presence of another person seep into me, like warmth, grounding and connecting me back to a sense that my life was meaningful. I made us coffee and banana smoothies, then went and stood barefoot on my lawn to water my garden. My poppies are in bloom. Then I dressed and drove up the freeway to work, and painted children, and read a book in the quiet times, and ate a little, and drank a lot, and drove back to Rose’s place to share in a pizza evening she was having. I was trembling with exhaustion and we went to sleep holding hands until she needed to go to her night shift.

1-2013-09-29 09.30.51

Home after, and tired and sad and wishing my life did not hurt so much. Wishing I lived in a caravan or tent and could hear the wind. I’ve been broke and out of antihistamine for days, my skin is red raw with hives. They are especially bad when I’m under emotional strain, or grieving. I used to describe them in poems as my skin screaming.

There’s a path forward and it has beauty in it. Some days you sing the road beneath your feet, some nights you weep it.