Julia: ‘P’s Get Degrees

 

It’s Meet My Peeps time again!
When I was at University, back in the Nineties, we used to say “Cs get degrees”.  It was our way of reassuring ourselves that we didn’t have to ace everything to get the piece of paper we were working towards.  It is a useful sentiment for socially distracted students, but quite a necessary mindset if you are ill.   Julia lives in Melbourne.  Her tenacious efforts mean that she is getting really close to finishing her degree; not long now!  This is such a huge achievement because she has done it all juggling study with the daily challenges of Postural Orthostatic Tachycardia Syndrome.
These days, in Australia, the old fashioned C grade has been replaced with a more politically palatable ‘P’ for ‘pass’.  Hence, ‘P’s Get Degrees.  🙂 Today she is sharing with us her story and her top tips for chronically ill High School and University students.  Take it away Julia:

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With chronic illness come many sacrifices. Many people have to give up the world of study, just like others would have to give up full time work. I am one of the lucky few who, although my methods may not be conventional, has been able to continue studying while sick.

I began doing 2 or 3 subjects at a time,(3)

It all began back in year nine with the onset of chronic and complex migraines. They started as a horrible one-sided headache once every few weeks and eventually became more and more frequent and complex. By the time I entered year 11 I was experiencing episodes of dizziness and paralysis with these weekly migraines. With my final year of school approaching I remembered thinking, ‘well, it can’t get any worse than this.’ Boy, was I wrong!

It was year 12 retreat, a 3 day trip to Toolangi with half the year level. I had been feeling a bit rubbish over the holidays leading up to the school year, but had put it down to jet lag after coming back from an overseas trip. It was the afternoon session and 36 degrees Celsius. There were no fans, no air con. All of a sudden, my head was in my friend’s lap. I have no memory of how it got there, only the clamminess, mild nausea, head feeling like my brain had been replaced with helium and that familiar feeling of a migraine creeping in.

Of course, being in the middle of nowhere, calling home and getting picked up because of a migraine was not an option, so instead I was directed to have a lie down in the teacher’s cabin. I remember taking my medication and being knocked out pretty soon after. I woke to a student teacher staring at me. This was not the end of my ‘adventures’ on retreat. The next day was just as hot and I passed out again. I was given permission to go and sit in another room with a few of my friends while they waited for my mum to drive up and pick me up. After passing out again while sitting on the ground and struggling to get back up, an ambulance was called.

This was the clearest beginning on my POTS (Postural Orthostatic Tachycardia Syndrome), despite hints of it following through my life.

As you can imagine, fainting multiple times a day and feeling so unbelievably fatigued and dizzy doesn’t go to well with your final year of high school. My official attendance for that year ended up being about 50%, not to mention the classes I ended up leaving early.

My determination to finish high school was enough to keep me going. I was not going to spend another year there! I learnt early on, that teachers were always willing to help as long as you showed them you were willing to learn. Every class I missed or left early was followed up by a simple ‘copy and paste’ email asking for the stuff that I missed. Luckily mild insomnia came in handy allowing me the hours to remain mostly up to date. Most of my studying was done in bed with my laptop on my belly.

As term 3 crept up, I realised POTS was here to stay, and the difficult decision was made to drop one of my favourite (but worst) subjects, French. The head of VCE (Victorian Certificate of Education = High School Diploma equivalent) subjects was keen for me to keep the subject because of the mark up in score that came with it. The reality though was my concentration was completely shot so, concentrating in another language was never going to happen that would mean I wouldn’t even get a mark that would warrant any sort of a mark up.

It was a difficult decision, but I don’t regret it at all. My French teacher was amazing though, she understood my love for the subject and the limitations that came with being so unwell and went on to invite me back for the fun lessons like watching the Lion King in French. I never properly thanked her for everything she did for me.

Once I finally got through year 12 there was always the fear I wouldn’t get a mark that would get me into what I wanted. Luckily though, when university offers came out I got my second preference, which was a Bachelor of Science (my first preference being a Bachelor of Biomedicine). At the time I did not realise that this was a blessing in disguise. The biomedicine course was structured so much that it would actually have been quite difficult to do part time, as I have been able to do.

My first semester was a full 4-subject load and was indented by many trips to the hospital and constant rescheduling of assessments. It was from that that I learnt a full load was not for me. I began doing 2 or 3 subjects at a time, and in my worst semesters even just doing one subject.

I’m a perfectionist and wanted to get the best marks and subsequently, best average. I worked as hard as I could and quickly learnt that this was not going to happen with attendance just as bad as high school. I adapted my study skills and would only going to non-recorded classes and the ones that were recorded would be done in the comfort of my college room.

Living on campus was an absolute blessing! This allowed me to have some sort of a social life as well as maintain my study life. Friends that I met at my college have always been super understanding and I can never thank them enough for that. In fact, I would not be still studying if it wasn’t for all their support and help.

Of course, studying part time isn’t always ideal. There have been so many times where I’ve wanted to give up and just become a professional sleeper! The frustration of my situation really started to settle in when my friends started graduating. I felt like I was falling behind in life. The reality of a never seemingly ending degree would result in many tears, but eventually I’d get over it and just suck it up. Every semester I had to drop a subject would tear my heart apart, knowing that it was then going to be an extra semester, or even an extra year. 
I’m now in my final semester, and even though I am going through another rough period, that drive to finally get that piece of paper is keeping me going.

This is my advice to those of you who are studying with a chronic illness:

Don’t feel you need to finish with the people you started with, through my epically long degree I have met so many amazing people that I wouldn’t have met if I hadn’t taken so long.

Don’t be afraid to ask for help. The number of teachers, lecturers and tutors that have gone out of their way to help me has been ridiculous. I can never thank these people enough.

If you’re at university, don’t allow your own stereotypes and judgements stop you from seeking help from student services. Register, because the people are there to help you get through and do everything possible to make your time through uni as seamless as possible,

Pace yourself. This is probably my most hypocritical advice, because I fail at this one on a daily basis. Take your time, don’t be afraid to say no to things and don’t listen to people who call you ‘lazy’ or ‘not a morning person’ when you reveal how long you’ve slept in. Those sleep-ins may be the difference between quitting or getting through!

Just remember, you don’t need to get 100% on every test, P’s get degrees!

And to those who have been there for me and helped me at any point through school or university, thank you! Thank you for absolutely everything you have done for me, whether it be sharing notes, driving me places to save my ‘spoons’ from public transport, dropping work off at home, keeping me included in social activities and understanding the weird things I’ve had to do to get myself through.

-Julia

Meet My Peeps

Pretty Little Pink Thing

Girly Post alert.  This one is all about female anatomy and my feminist sensitivities, so if you don’t want to read on, please don’t!

Ah, I don’t know quite why, but I’ve been a bit tearful lately.  Probably my hormones (the Bobby D calls them my ‘moans’… can’t think why).  And today I had an encounter that had the tears springing up fresh. Silly, because I’m a tough ol’ bird. I guess there are some things that make you feel a bit sensitive.  Criticism about any aspect of my girly bits makes me a little reactionary.

I remember when I was due to have my first baby, the Obstetrician had some concerns about my cervix.  It was covered in scar tissue.  She was worried it would be problematic when the cervix had to efface.  It took more than thirty hours from induction.  And I delivered a beautiful little Bee, followed three years later by a whopping fella, Zed.  Then, a few years ago, I had a significant gynaecological surgery.  See, a couple more years of bowel and bladder dysfunction had damaged the walls of my vagina, front and back. I still feel aggrieved that I managed to get my vagina through two pregnancies and a very large second baby, intact, only to have the muscle walls breached by a retentive bladder and overloaded secum.  Unfair, she cried!

Anyhoo, during the surgery, the rectocele and the cystocele were repaired.  My “telescoping uterus” (I imagine her as a fearless buccaneer scanning the horizon) got hitched up and stitched to my spine. A further surgery was necessary two months later, when my post-operative pain hadn’t gone away.  I had exposed nerves in the granular scar tissue caused by the initial surgery and nerve pain from the hitch-and-stitch.  It was climb-the-walls painful.  I had steroids injected directly into the site and settled in to what would be my new normal.  As time went on, the pain crept back.  Eventually, my pelvis just always ached.  I didn’t even consider that strange.  But more intense nerve pain would break through the ache and travel down my legs, burning and stabbing as it went, making walking increasingly difficult. Strangely, I didn’t even relate this pain to the earlier surgeries.  I worried that my gait issues and pain problems were signs of a neuromuscular development in my diagnosis.

Getting high dose steroids this year to suppress my immune system had an unexpected side effect.  The anti-inflammatory benefits of the steroids knocked out my pelvic pain.  I was walking normally within days.  I’ve only had to use the cane a few times since the steroid treatment began, it’s been amazing.  And finally, without all that pain down there, I’ve caught up on my overdue smear.

My GP is a really lovely woman,  and normally I love her straight talking manner.  She has this new smear taking device with a built in light.  Vastly different from the old metal cranking devices.  Ow.  But the new-fangled thingamajig was great.  And she clearly got a good view.

“Oh!  A few nabothian cysts up there!  Nothing to worry about… gosh, your cervix is not exactly a pretty little pink thing is it?”
“Probably not,” I said “…she’s been through a fair bit, I reckon.”

Why is there even such a thing as a

As I walked home, freely swinging my legs in their hip sockets, those words echoed over and over in my head.  The tears sprang up. So I laid my hand on my tummy and had a wee word of encouragement to that old girl stitched up to my spine.  You might not be a pretty little pink thing, dear Uterus, but you have done great work in your time. You cradled my two babies all the way to term, you get assaulted every month by the injustices of menstruation and still you rally.  You have been tied to my backbone and still you carry on. In my book, that makes you a thing of wonder, strength and resilience.  You are beautiful, just as you are.  Battle scarred, pock marked and cysty.  You’ve been doing the hard yards and I salute you.

I might be feeling just a tad defensive of my girly bits.

Hmmm.  Why is there even such a thing as a ‘pretty’ cervix, for crying out loud?
Enough, already.

Top Tips for Chronic Illness Patients

These are my best ideas for dealing with chronic illness.  Got some I haven’t thought of?  Share your ideas in the comments, I’d love to know your thoughts…

Picture of a girl in a robe, asleep on the sofa and the words 'top tips for dealing with chronic illness'

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Learn: find out for yourself, anything you can on your condition so you can make good decisions about your care.

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Manage the symptoms:  follow the recommended treatments given by doctors, including taking all medications at the correct times. Use an alarm system or app to help you remember.
Plan for proper nutrition, engage in a recommended exercise program if you can.

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Observe:  Know what triggers your symptoms, if anything. Learn to pace. You know your limits better than anyone else.  Sometimes, challenge your limits a little. It’s okay to try things to better assess your capabilities as they change.

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Rearrange:  Identify the things in your home that can be re-organised to make daily tasks easier. eg. We have just installed a high bench in the laundry so I don’t have to bend down to do the washing. Changing things can help you maintain more independence.

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Enquire:  Ask away! Ask your doctor, social worker and anyone else involved with your care about the services available to you.  Ask online support groups for advice. These people have often been navigating these waters longer than you.  They will have invaluable ideas to help.

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Talk:  You need to continue to talk to the people in your life who are involved in your care. Don’t give up on expressing your needs.  If they don’t know, how can they help?  Just make sure you also keep up the listening part of the communication equation.  The talking and listening is so important, especially in your primary relationship. Try not to shy away from the hard conversations, persist with them until you find resolution, because in the resolution you’ll find peace and connection again.

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Redefine: what your roles and responsibilities are.  Discuss these with your partner, family, friends.  You might need to sometimes be assertive to help people understand the things you can and can’t do.

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Prioritise:  Decide what really matters to you in any given moment and congratulate yourself for prioritising that.  See if you are spending too much energy on tasks or people who are detrimental to your wellbeing.  It might be time to take some things out of the picture.

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Plan:  set realistic goals for your day and try to adopt a kind of structure. Eating at regular intervals can be hard to manage, but it is really important if you are taking medications.  Plan your food in advance whenever you can so that it will be easy to get to and eat. You might need to ask for help to get your food organised for the day. Avoid spontaneous activities if you don’t have the supports or circumstances in place to make it work for you.

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Reinforce:  how valid and useful you are by finding ways to empower yourself.  Being creative is a wonderful way to remember how unique and special you are. It’s also a great distraction.  Find ways to express your own skills and talents and explore all the ways you are able. This detracts from the focus of all the ways you feel dis-abled.  Think of things you can do and get into doing them.  For me, it’s writing… blogging has been a wonderfully empowering tool.  And I can do it in bed!

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Reframe:   Taking a different perspective from the negative is a powerful tool of choice. Being positive can be as simple as seeing the humorous side of a situation or reaching out to someone else who is suffering with some encouragement or acknowledgement. It can make an enormous difference to your emotional well-being.

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Distract:  If you like to be in control, this one is for you.  Man-handle your mind’s focus on your illness by wrestling it into another thought pattern.  Use some strategies recommended by psychologists. Listen to music, do some art, write; get your brain and fingers busy.

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Relax:  Stress worsens the experience of symptoms and leads to increased tension.  Deep breathing techniques, massage, meditation, yoga, tai chi are some things you could try (depending on your physical ability) to improve your relaxation.

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Laugh:  it’s the best medicine. If nothing in your daily experience is tickling your funny bone, seek out laughter.  Search online for funny videos, comedy channels or TV series.

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Get support:  It’s totally normally to be emotional about being chronically ill.  Of course you are!  There is grief for yourself, but also you may find self-blame, anger, frustration, hopelessness, despair.   Seek help among those dealing with your illness.  If you can, find a support group, online or in person. But also, use the mental health help-lines or seek professional psychological help. Friends, family, fellow-sufferers and health professionals can all help you find ways to let go of the sadnesses and find a pathway through.

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Let it Go:  take steps to accept that the old definition of yourself and your old life, prior to becoming ill is no longer relevant to this time you are walking through. Let yourself redefine and create a new meaning and purpose beyond your illness.  I have found that asking by myself  “What sort of person am I?”  rather than “What do I do?” I have a good starting point for this process.  Letting go is not something you’ll do once.  You’ll let go in stages, or you’ll let go over and over.  Just keep your focus on who you are. And be kind to yourself. This letting go is tricky.
*Are you in New Zealand?  If you are and you are registered with a ProCare GP, you may be eligible for funded sessions with a psychologist (no cost to you).  You can find out more about this service by contacting ProCare Pscyhological Services or your GP.   www.psychologynz.co.nz
Some health insurance policies cover psychiatric services or there is always the option to pay for the services of a qualified psychologist.  Call your insurance provider if you have questions about it.

Chronic Illness.  Top tips for dealing with chronic illness.

Ricky Buchanan: Home Help, Help!

This post first appeared on the thread for my patient group on Facebook.  Ricky has kindly agreed that I can share it here for you.  I was so impressed with what she wrote.  I’ve discussed home help on this blog before. But Ricky’s words have grown from more than fifteen years experience with government-funded home carers and she has laid it all out so beautifully.  I just knew there would be people here who would benefit from her wisdom. Here are her five helpful hints for working with Home Helpers.

Thanks Ricky!  By the way, you can find more of Ricky’s sage advice on her blog here, she writes about empowering apple users with assistive technology:
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STOP WORRYING!
Firstly, try to stop worrying. The cleaner or home help or whatever (I’m going to write “helper” from now on) does not care if your house is messy, dirty, unhygienic, full of mess, etc. DO NOT clean up because they are coming or waste energy worrying about it. You are guaranteed not to have the filthiest house they’ve ever seen, and part of their job is NOT to judge you. If they make rude comments or anything, fire them and find a new person. You do not have spare energy to worry about that stuff!
COMMUNICATE
Many helpers come from a non-English-speaking background, and even the locals are not from your family and don’t know your preferences. They will have a different idea of what “normal”, “ordinary” and “sensible” is, to your own.Don’t expect people to pick up hints or body language necessarily. You need to do the best you can to communicate clearly and in understandable words. If you are upset at something they did, try not just to grump and be snarky but actually clearly say “You cleaned the toilet with soap, I’m glad it’s clean but could you use the Harpic next week please?”.
If you’re too tired to communicate at the time, contact the agency or (preferably) the helper directly as soon as possible and apologise for your mood and do the explaining then.If you need the helpers to be quiet, or not ask you questions, or whatever, you need to say that, too. Try to say why you need something if it’s an unusual request – I need helpers to figure stuff out themselves instead of asking things because I can’t manage to answer a lot of questions. That’s a really uncommon request! I have to be very clear that I don’t mind if they make the “wrong” decision, it’s more important to just decide for themselves and we’ll talk about it when I feel better.
There are more ways to do things that

PUT SIGNS ON THINGS
Put signs on things that your home help/cleaner is likely to use. My hall cupboard has a label to say what stuff goes on what shelf. My washing machine has the instructions taped to the front, etc. The laundry detergent has a sticker saying “only use half a scoop.” It can save you a PILE of energy if your home help can figure out something without asking you first. If they ask you anyway, tell them to read the sign.

Try to make your signs as simple as possible with not too many words and not too hard words, remember most cleaners have English as a second language and may not have very good literacy.

MAKE A LIST
If you get the cleaners to do the same thing every time, make a list of those things with instructions to help new people. For example one item might be:

Change bed clothes (change fitted sheet, top sheet, doona cover, pillowcases. put old things in blue hamper in bathroom, new things are in hall cupboard)

or

Mop floors in bathroom and kitchen (bucket and mop in bathroom, detergent in hall cupboard second shelf, use 1 tablespoon detergent and warm water in bucket)

If you get your helpers to do different things each week, make a list anyway with all the possible things on it and print out a bunch of copies. Each time they come, tick the things you want done and give them the list.  Here is a printable of cleaning tasks that might help spark some ideas.
(Thanks for the link Ruth Elbon  -Rach)

CHILL OUT
There are more ways to do things that you have ever dreamed of, and your helpers WILL do things in ways that seem totally crazy to you. They will do your laundry with dish detergent and clean your floors with teatowels on their hands and knees and leave grease on your dishes. Don’t give up though!

If something is done wrong, speak to the helper but ALSO check if you could clarify your list instructions or the labels on things to help stop that thing happening in future. Also check in with reality – it might not be done the way you prefer but did it get the job done (more-or-less)? You wouldn’t have cleaned the toilet with hand soap but is it clean now? Most things are not actually worth stressing about too much.

At first, home help often seems like more trouble than it’s worth, but it IS worth persisting. You’ll learn how to write your signs/lists so the helpers understand, and how to explain things, and you’ll find helpers you get on with and once they’ve worked with you a bit you will both know each other better.

-Ricky Buchanan

There are more ways to do things that(1)

The Pacifist and the Poppy

It’s ANZAC day, a special date in our calendar down in this part of the world.  If you are in the Northern Hemisphere, you’ll need to know that ANZAC stands for the combined services of Australia and New Zealand in the two World Wars.  Together, we joined with our allies to fight off the threats in Europe, the Middle East, Africa and closer to home.  On this date, we commemorate the fallen ANZAC soldiers.  It’s a day that stops the nation.  People attend dawn services and wear the red poppy on their lapels, sometimes alongside the service medals of generations gone before. The red poppy is the symbol of this day, as it reminds us of the battle of Flanders Field, now covered in red poppies.  A stark visual reminder of the bloodshed and lost souls of war.

Picture of a red poppy standing taller than the poppies in the field beyond. A true 'Flanders Field' full of red poppies to symbolise fallen soldiers.

I have always been horrified by war. The thought of having to go away to fight when you probably don’t want to.  Lucky for me, the only ‘traumatic echo’ I have of war, is the commando comic images burned into my childhood memories: young men being blasted into the beyond. I can’t fully comprehend that real soldiers spent their last days killing people and suffering as they watched their comrades injured or wiped off the face of the earth.  It’s a strange kind of political game I have never, ever understood.  I blame patriarchy and the male mentality for believing war is a solution to state issues. I will never sit with the ‘glory’ of war and I consider it to be a pointless, criminal waste of life.

My brother, when we were growing up, was fascinated by war, what little boys weren’t?  Where we lived in Papua New Guinea, war relics were easy to find.  There was a mount in our town of Lae, that was tunnelled out and used by the Japanese as a base hospital.  As a result, the land around the town was littered with artifacts of war.  Unexploded shells, bullets, and even, in the jungles beyond our town, crashed warplanes. I remember two particular finds.  A Japanese war helmet with a bullet hole in it.  And somehow, more poignantly, an Allies service food bowl with it’s fork rusted right through the rim. When the war ended, rather than surrender, the Japanese blew up the entrances and died inside. And like any antipodean school child, I have heard the stories about Japanese atrocities, I’ve read the books and been horrified by the cruelties inflicted upon Japanese-held prisoners of war.  But there were human souls inside that mountain who died because of war, too.  They died because they were soldier-pawns in a bigger game of war, played out by bigger men making decisions in rooms far from the fighting.

I just don’t get it.

We commemorate the bravery of those in the war effort.  Not all war effort, but WW1 and WW2.  These particular wars seem to have a sanitised, mythical greatness about them in our national psyche.  I do feel it was unthinkably brave to ‘do your duty’ if you were so unfortunate enough to be born in a time of war. And so they were. Brave beyond comprehension.  I can’t imagine the incredible damage done to so many psyches, faced with the gritty duty of firing on other human beings. My mother told me that my grandfather had a drinking problem because he had gone to war. He was away when she was born; a brand new husband and father who returned to his fledgling little family, a vastly different person.  I wonder who he would have been without that war. Who she would have been?

How far does warfare reach into the hearts and minds of the generations beyond?

Yes, we should remember them. But what is that remembrance for if we do not also begin to ask the questions that no one considers patriotic.  Why? Why did it happen?  How can we stop it happening now? And it is!  There are wars happening all over this planet, does it matter less because it is not our family members firing the bullets or taking them?  Does it matter that one of the greatest weapons of war across Africa is sexual assault and female mutilation?

War is not the only way to solve problems.  We are a race of intelligent souls, there are alternatives. There are radically different ways of thinking that could lead to a better future.

I mean no disrespect to our fallen ancestors; the terrible cost exacted by war on family after family. What I mean to say is that I can’t believe that we cannot get our act together and look for peace. Let us not create another reason for another commemoration.  That is the reason why, on this day,

I Remember Them.

I guess that makes me a pacifist.  How about you?  Do you have feelings about this? How is it that commemorations are our solemn duty, but having the conversations about how to stop it all, is not?

Anna Kennedy: Nowhere Land

Today’s guest post comes from Anna Kennedy. Anna is a psychologist who became sick with severe ME (sometimes referred to as Chronic Fatigue Syndrome) and POTS.  Here, she thoughtfully discusses the mindset that has helped her navigate ‘Nowhere Land’.  I can really relate to the part where she talks about being able to do things that used to be impossible and how she thought she would never take that for granted again. Thank you Anna for sharing your experiences here.  I know that many will relate to your journey.

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He's a real nowhere mansitting in his

This is kind of how I feel these days. I have nothing much to show for the years since ME (Myalgic Encephalomyelitis) and its sidekick POTS (Postural Orthostatic Tachycardia Syndrome) became my constant bedfellows.  During the first horror year, when I was bedbound and lost 25% of my body weight, I at least looked the part.  ME was written all over my face, not to mention the rest of me which couldn’t stand up long enough to make a quick cuppa.  But nowadays I look pretty normal.

I’ve improved to the point that I’m more moderately affected with the odd severe dip thrown in just to keep me on my toes. My symptoms are less severe, but still unpredictable and frustratingly limiting. I’m too sick to hold down a job, but can manage paced domestic tasks and the occasional social event, all accompanied by the predictably unpredictable multitude of symptoms and payback that ME dishes out just for living.  If I lived in a silent dimly lit bubble and did absolutely nothing except lie down for 6 months, I expect I may even begin to feel quite chipper; but unfortunately there’s that little thing called Life that gets in the way of that.

These days I feel a gnawing kind of improvement guilt. I guess it’s probably akin to a kind of survivor guilt, a knowing about just how traumatic this illness can be.  Though the memory of severe ME is still fresh, I am not completely confined to my bed.  But I carry with me an awareness (that I didn’t have before) of the many who count my very worst days among their very best; who’ve lived for decades in a 24-hour terror of suffering so ghastly that it’s unfathomable for those who do not live it. I feel guilty that I was completely ignorant about ME before I was diagnosed. Guilty that I didn’t use my pre-illness years working as a health professional to recognise and educate people about ME and help those who I did not even know existed because they socialised online and lived within the four walls of their bedroom.  I feel guilty for improving when my friends with ME have not or have worsened and I still can’t do anything to relieve their suffering.

I feel guilty for not being grateful enough for the improvements I’ve made.  I remember when I was severely ill thinking that if I could just manage to cook a meal for my family again, I’d be fine with that. I yearned to load the dishwasher or take out the garbage. That was enough quality of life for me I thought. But then when I got there, the gratefulness that I tried to hold onto so tightly, slipped through my fingers.  Disappointingly quickly those domestic tasks, that seemed oh-so-shiny when I was too ill to do them, became dull.  Because, when I was at my most ill, I held on to a fantasy that improvement in functioning would naturally come with feeling well. But that didn’t happen. Instead, I moved up a notch from hellish to chronically cruddy.  So, when it comes down to it, I’m still sick every day; I can just do a bit more while being sick.  And I can hide it better.

These days I inhabit Nowhere Land.  I straddle the worlds of the chronically sick and The Well.  I move in two circles, in neither of which I feel I have a firm place.  To the doctors, I’m “managing a chronic illness”; I’ve gone to see the specialists who I hear may help, I’ve diligently tried their treatments and followed their protocols (most of which made me worse).  So I’m not really interesting to them now, because I’m not a success story but I’m not knocking on heaven’s door.  They’ve run out of ideas and just sort of leave me to it. I’m in Nowhere Land.

Socially, I’m a bit of a Nowhere (wo)man.  My friends with ME, the ones I made online when I was too sick for a social life and was lonely and desperate for understanding, those beautiful and courageous souls that I’ve never seen in the flesh, they’re mostly still here.  But I let them down because I’m not online as much and I miss supporting them when they need it most. I feel like my news of doing is deeply insensitive to their continued suffering, and I’ve betrayed them in having left the hellish world they still inhabit. I wonder if they feel angry when I vent and whine in our online support group about my trials which must all seem like problems they’d give their left arm to have. Little do they know, they are the precious thread of red wool that I use to wind my way back to comfort when I get lost in Nowhere Land.

Nowadays, I can also move into the world of the well.  Carrying around my knowledge of the unseen world of the chronically ill, I spend time with my in-the-flesh people. But I’m like some kind of odd expat who randomly pops in for unexpected visits.  Of those I’ve told about my illness, some have stayed and others have backed slowly away. Some I’ve backed away from too because their disinterest has hurt too much.  Those who have stayed have been patient enough to listen to my botched attempts at explaining ME in 100 words or less, and tried their best to understand its weirdness.  They’ve borne witness to my life with ME with curiosity and empathy. They’ve been repeatedly let down by my unreliability but kept coming back for more.  And they have stood patiently still while I’ve moved between my worlds. For these precious people, I’m grateful beyond words. I don’t know that I’d have done the same in their shoes.  These special people have made room for the ME in my life and put up with me changing from a mostly spirited, reliable and supportive friend, into a friend who is present with ad hoc inconsistency at best.

To the uninitiated, I’m better, as in recovered.  Because that’s generally the well person’s understanding of illness: you get sick then you get better…or you die. There’s no in between. There’s none of this living-with-it-on-and-on-every-single-day sickness.  “Gee you’re looking well” they say, and “I’m so glad you’re back on track”.  In reality I’m still an 80-year-old wolf in 43-year-old sheep’s clothing. Look more closely and you may wonder why I’m never really seen until the clock reaches pm.  At afternoon school pickup, you will notice I’m often the mum with wet hair and no makeup who shuffles to the nearest bench while the other mums stand around chatting in groups. I half listen but I’ve got little to say; partly because my one achievement of the day has been showering and getting dressed; also because to join them would mean standing up and losing what little remaining power my body has; but mostly because my brain-o-mush means I only absorb bits and pieces: I make a tit of myself by forgetting things they’ve just told me or making vague comments that trail off mid-sentence because I’ve suddenly forgotten what I was saying.

I’m the odd mum in my village; the middle-aged lady driving the nanna cart, wearing sunglasses in winter, head bobbing wearily as I trundle towards the classroom door, pale and nauseated by the darting movements and fingernails-down-blackboard noises that delighted children make when the school bell sounds. And, when he sees me, my 5-year-old chucks his backpack down in the middle of the schoolyard because he’s excruciatingly ‘‘barrassed‘ that I’m on my scooter and furious at this very public display that I’m sick again.  He knows full well it means, once home, Mum will shove Sao biscuits and jar of Vegemite on the table and stumble back to bed where he’ll visit me with a thousand bits of paper he’s coloured in and school notices to sign and stories of the big hurt on his hand from the awesome tricks he did on the monkey bars. And all the time my brain is blank and nothing’s going in, nada, zilch. And, because my body can’t seem to produce energy for ANYTHING, I have to remind myself to move my face into a smile, and let out uh-huhs and oh dears and kiss his hurt and make futile attempts at focusing my eyes on his drawing of Batman fighting the alien dude.

Before he leaves my bed, he reaches into his pocket and pulls out another little thing he’s collected today. He’s been doing this since I first became ill, before he was old enough to speak the words of what was happening to his mother.

He places a little white stone on top of a mounting collection of feathers and rocks and shells on my bedside table, precious gifts from him to me. “Thereyar Mummy, to help you get better”. If only, if only, my darling.

Over the years, I’ve started to run out of words to explain ME.  My brain scrambles in my efforts to describe its convoluted-ness in simple terms.  Also, telling the story of ME and my experience with it makes me feel vulnerable. It’s like peeling a bandaid off a wound that hasn’t healed and waiting for peoples’ reactions: some recoil and quickly er-hum their way out of the conversation; others start to get that suspicious look of disbelief I’ve seen too many times and which never fails to hurt to the core; many show great caring which can either make me weep with embarrassed relief or go on to gush in a tidal wave of oversharing.   For those curious enough to ask more, there is, frustratingly, never a straight-forward answer to the questions that follow: What causes it? What’s the treatment? What’s your prognosis? Why haven’t I heard of ME, oh CFS yes I’ve heard of that, that’s that chronic fatigue thing? Do you know about XYZ [insert helpful suggestion of treatment or name of alternative health practitioner here]? You’re looking good, when can you go back to work/ use your spare time to paint/help out at the school fete/come jogging with me?

At times, I’ve wanted people to know about the parts of my life they don’t see. I’ve explained that when they don’t see me for long stretches it’s because I’m more ill and horizontally resting so that I can be well enough to do things again. Hoping not to sound like a whinger, I’ve provided a few details of the limited routine I follow to tread the fine line between semi-functional and not; how a “pretty good” week is still one with 2-3 days spent in bed; and how I live every day with pain and nausea and trouble being upright. They listen and nod and say kind things, but I can see they can’t really fathom how the person in front of them who looks alright has any kind of illness at all.  And I understand all this, really I do, because that would have been me a few years ago.  Listening and nodding, but inside going Huh?

So that’s where I am. Sitting (well, mostly lying) in Nowhere Land:  the world of moderate ME.  In and out of the world of the well and the sick.  Making all my nowhere plans; ideas that so often don’t come to fruition because ME has its own agenda.

But how does that song end again?

Nowhere Man, don’t worryTake your time,(1)

And, I’m reminded how very blessed I am.  I have my people, the souls behind the screen and in the flesh, the ones who buoy me, teach me, and love me.  And, even in my Nowhere Land, my people find me, and they meet me where I am.

The Unplanned Pregnancy

This post is kind of special!  It’s…glitter numbers proclaiming The Chronic-ills of Rach's 200th Blog PostHe he he!  I think that means I can call myself a BLOGGER!

It was a bit accidental, becoming a blogger. I’d been doing some writing for my cousin’s website when she joined me to the Australian Blog Chicks group on facebook. Someone there recommended a blogging course.  It made me think that maybe there was a particular way to write for the web and maybe I needed to learn how.  At that time, I was in bed for a lot of every day too, so an online course seemed like just the thing.  I enrolled in the ‘Blog with Pip’ course for May 2014.

But Dysautonomia put me back in hospital just as it began. I was devastated to miss the start, but Pip set my mind at ease and encouraged me to begin anyway. Her course materials are available beyond the course dates, it was a huge relief!  However, I quickly realised that I’d need to actually have a blog to get the most out of the course.  And that is how The Chronic-ills of Rach began.  A bit like an unplanned pregnancy. Sudden, unexpected, but nice… once you get used to the idea!

And like a ‘whoopsy’ baby, the arrival of my blog illuminated the fact that having one was exactly what I have been needing, without ever knowing it!  Blogging has been wonderful for me. I’ve been able to write out things that help other people, but in doing it I have helped myself. It’s been therapeutic, educational, stretching. I’ve had a platform for discussing important issues, an opportunity to raise awareness, a space for making personal reflections, an outlet for my creativity and the beginning of a brand new direction and purpose in my life.

As a kid, I always thought of myself as a writer, but somehow the years between then and now convinced me that dream was for someone else. Like I couldn’t legitimately claim it, or it was too late, or too lofty an idea. Over the last twelve months, post by post, I’ve been claiming back my territory. That dream is mine! I am taking it back. I’ve been using my words. Like a big girl.

Thank you for reading my blog.  🙂  A blog is just a diary if no one ever reads it and I am so glad you have chosen to click on over.  Really, thanks!  You make my day, after day, after day!  Your comments, your presence, make the writing so much more meaningful for me than just navel gazing.  I have a context, we have a conversation. It warms my heart.

According to my web host, I’ve had 1,115,155 hits since I started last year.  Woohooooo!  That number makes my mind swim.  I’m blogging from a tiny country at the bottom of the world and my biggest numbers of readers come from the US, France, Germany, China, Latvia, Australia, Ukraine, Italy and Russia, in that order. Of course, some of my ‘readers’ are probably internet crawling robots, but I don’t care (!) all are welcome here, especially if they contribute to giddy numbers like the one above.  Happy days.  I am in a celebrating mood.  Might have myself a cuppa.

Well done little bloggy baby.  We’ve made 200 posts together.  We’ve made new friends. We’ve made a difference, and if the difference is only for one person who felt less alone because of my words, then it is worth all the effort.  If you are thinking of beginning a blogging journey, I can’t recommend it highly enough.  Try Pip’s outstanding course.  Get amongst it, I promise you will surprise yourself.  Blogging is a gentle, collegial, congenial way to flex your writing again.  Why not?

And if you are a blogger already, please leave a link to your blog in the comments below.  I’d love people to find your blogs through my blog. It’s a bit like a neighbourhood block party.  Blog party!  Heh!  Leave a link and tell me how blogging got born for you.

Ciao!
Rach

What Families Do

I wrote this piece last year when I was reflecting on my changing attitude to being sick. Instead of hating everything about Dysautonomia, I was beginning to see the silver linings. To understand the value of any human experience in teaching us important things, about ourselves and our loved ones.  This piece is about my daughter, but it is also about me.  About being a little kinder to my own mother heart and not judging all the shoulda/ woulda/ coulda parenting moments.

Caring for the diverse needs within a

She was nine years old. And it was only one of the times she had noticed that something was happening for me.  I was doubled over on the edge of my bed, wracked with tremors, pushing my terrors for the future away from myself.  Carrying the ever present burden of knowing my condition was progressive and living in fear of what was to come. She came over to me and cradled my head in her arms, shushing me and stroking my hair.  “It’s going to be okay… poor Mumma” she murmured.

Her arms seemed so strong, yet so frail, wrapped around my head. An image of her tiny hand wrapped around my finger on the day she was born flashed across my mind. I thought about how unfair it was that she should be bringing me comfort.  So young, she should be out in the yard doing cartwheels with her friends.  Selling lemonade or riding her bike. Not picking up on cues invisible to most and cradling her mother’s exhausted head in her arms.

I looked up at her, filled with the wonder of who she is as a person, her capacity to love, to make me feel like her words could be true.  I looked at her as the tears filled my vision.  And as I said “I’m so sorry, honey”.  She shushed into my hair.  “It’s okay Mumma”.

Later, we talked some more about it. I explained that I wished it were different. I told her how much I wished she didn’t have to see me sick, or worry about me, or feel responsible for helping me. She reached for my hand.

“Mum, this is what families do.  It’s called loving people,”

she said, her quiet voice warm and sure. This kind of insight is rare in a child. She’s extraordinary, my girl. And she’s right.  The time comes in every family when we need to look after each other. It might be an elderly family member or a tiny baby, it might be a sick parent or a child with learning differences, it might be a broken heart or a lost dream. Caring for the diverse needs within a family isn’t the sole responsibility of a mother.  It is a work of heart from everyone in the family.  It’s what families do. Making sense of the challenges we face and delivering the love and care we need. It’s what makes families work.

I have often raged against my diagnosis.  Felt like it is a cruel punishment meted out just to us; us alone, among the throngs of well people smiling out from the glossy pages of normal life. Why is it my husband and children that need to suffer through this?  Isn’t it enough that I do? Why must it throw their lives into disarray as well?  But lately, I’ve been seeing it more often in a different light. The light that shines through situations like the day she comforted me.  I’ve been thinking about her words.

As I watch her grow, I have often thought about the hand fate dealt us. She has such a beautiful heart, my girl.  Strong and sensitive, sweet and soulful. She may have developed these aspects to her nature entirely independent of our situation, that’s true.  But when I contemplate all the challenges we have faced as a family, I know that her life experiences have contributed to the beauty of her soul. Hardship, unpalatable as it is, helps us to grow. I see that she is advanced in the knowledge of all that matters in life. Her priorities are good. Her heart is kind. There won’t be much that she will face as an adult that she won’t already have inner resources for. She’s set.

It’s true that my diagnosis has brought us all much suffering. Yet that suffering has brought a perspective that helps each one of us to appreciate the beauty of life so much more. I didn’t choose to get sick. She didn’t choose to have a sick Mum.  There is no need to apportion blame to the facts. They just are.

Because this life, this is the one we got. And it has given us a chance that many others don’t seem to have.  Through all of the moments of need and response, we have learned we can rely on each other.  We can rest in each other’s arms. We get it. For every difficulty, there is a flip side benefit.  For every compromise, respite.  Some of those benefits will be more evident in the long term.  But some, like that strength of connection between us as her arms wrap around my head, are for right now. It’s nothing to do with sickness or even wellness. It’s nothing to do with how it should be. It’s nothing to do with being a failure as a Mum or over-burdened as a kid. It has everything to do with how it just is. This is life. And as she put it: It’s called loving people.

I’m grateful to have this wonderful girl in my life. I’m grateful for the lessons in love that I get to learn every day. And yes, I am grateful for the space created for that learning by my diagnosis. There are many ways to grow as a person, just as there are many ways shut it down. If there must be sickness, then we are not going to waste any of it ignoring what it has to teach us.

It’s just what families do.

Margot le Page -What If?

watercolour splodge with the words 'What if this is as good as it gets?" in white text

This Meet My Peeps guest post is written by a friend I met in my patient group. Margot Le Page is a wonderful writer and a gutsy person.  She asks a question each of us comes to at some point in our chronic illness journey.  And answers it in a powerful way.  I think you’ll agree that Margot’s perspective is worth sharing. Thanks Margot for sharing your story here.   -Rach

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I don’t remember when I first heard this question. It’s not original.  However, I do remember asking myself.

The first time was a couple of months after a 9 hour massive back surgery to correct and stabilise my spine which was basically collapsing. I had scoliosis and ‘rotting ‘discs. I was 47.

I had led an exciting and complicated life to this point. From Oxide Street, Broken Hill to Rodeo Drive Beverly Hills, 2 marriages, 2 beautiful children. I was confident, extrovert and capable.

But, I had always been a bit sick. Nothing too major. Adenoids, allergies, appendix, basal cell carcinoma, pretty much the full a-z, all the way to ’zoans (ie protozoans my gut!) But seriously, nothing really hit me hard and I always recovered, following my Mother’s belief that we were a family of self-healers.  She should know after all, surviving an aerial gliding accident, 36 and pregnant, resulting in massively traumatic injuries including a leg amputation and the awful loss of the little girl, Helene Julia, she was carrying.

I had been given the ‘bad news about my back when I was 17. I was training to be a paediatric nurse with access to great doctors and highly respected specialists who told me it (my spinal curvature) was going to get worse and I would eventually end up in a wheelchair. I heard them but certainly did not actually believe them.  Well, not on the surface anyway. Denial can be a nice safe place sometimes.

Maybe, just maybe somewhere deep inside my head I knew those boffins were right and I proceeded to live my life in a hurry, keen to get away from that place. I sought care and treatment away from conventional medicine and explored a myriad of alternative treatments. You name it, I’ve tried it. Acupuncture, absent healing, aromatherapy, cranio-sacral therapy, osteopathy, a Russian Mystic, numerology, past-life, sacred oils, Indian Brahma Kumari meditation. (I’m sure there’s another a-z here too!)  I studied Reiki and nutrition, Pilates and yoga.  And spent a lot, I mean a lot, of money along the way.
Needless to say, those know-it-all doctors I had seen many years before were sadly, pretty right.  I came back to Australia from the US to seek conventional medical wisdom in a country where I trusted the system and had family and friends to support me.

So, there I was. Single, adult kids doing their thing, a long way from Los Angeles and my ‘other’ life, in a reconstructed body I couldn’t yet drive, barely surviving on social security, fighting a bitter divorce, needing opioids, wearing an awful shoulder to hip brace, using a walking stick…… pretty bloody depressing actually.  I cried and cried for lots of things.

And then somehow, with no tears left and a couple of truly wonderful friends helping me, my head not really together, I asked myself the Big Question. “What if this is as good as it’s going to get? Can I actually, really live like this? Maybe forever?”  The answer came… not immediately. But then I surprised myself with a resounding. “Of course I can!”. My thinking changed. I recalibrated. I thought of all the things I could do, not what I couldn’t. I didn’t feel so bad after all. I could get on a tram 600m from my front door when my drugs kicked in, and with one stop would get me to a bank, post office and supermarket. It might take all day, but, I could manage. I began to notice little things again. Cracks in the footpath where tiny daisies pushed their way through, sunlight playing through my blinds, sounds of birds and crickets….. I was all right.

11 years later I’m asking myself that question again.
5 further back surgeries, broken rods, pulmonary embolisms, dural tears, spinal fluid leaks, a craniotomy, I even had my gall bladder out in there somewhere too and my finger stitched!
I now have 13 vertebrae fused (great posture), increasing numbness and weakness in my right leg and a new diagnosis, Dysautonomia. Great?  Not.  Terrible? No.

My dear Mother, now aged 85, only 27 years older than me, currently not in great shape, has taught me so much. So, if, if, I live to her age, can I go for another 27 years like this, like I am now?
Of course I can.  Not ideal, but….. (big breath)

There will be more challenges ahead, I know that. I will no doubt ask myself the question again, probably more than once.
With less I have become more.
I am a good mother, a good partner a good friend.
I don’t mind me.
I am fortunate.

The Set Up

I’m around seven years old. My big sister has a collection of dolls that break my heart every time I look at them. They are perfectly groomed, dressed and arranged. Whenever she deems to play dolls, she spends time getting them just so, a complete change for all, a new tableau. And then abandons them until the next time.  

By contrast, my dolls are in various states of undress.  Some have been iceskating while the others jazzercise.  It’s hard work getting all those tiny legwarmers onto their vinyl legs. Over in the corner of my haphazard doll house layout, a small blonde family wearing Woodstock styled outfits coo over their blue eyed baby. The mother is wearing an apron over her floral maxi dress; the father’s wide collared, embroidered shirt is open to the waist. His plastic abs shine in the filtered light through our bedroom window, his brown eyes stare at me, unblinking. I wish I knew what he was thinking.

I’ve been playing this way for hours; my dolls are ready for bed, but there is only one bed, made from a cracker box and covered with various fabric scraps and beddings. I strip Sandy and Mandy off and share the peach nightie and bed-jacket combo between them.  I console myself that once in bed, no one will be able to see that Mandy has nothing on her bottom half. I hide Mindy and Sindy in the wardrobe wrapped in a t-shirt because there is no room in the bed for them. Meanwhile, the happy trio in the corner settle down under a fluffy facewasher. That’ll do.

As I get up to leave my dolls to their dreams, I look across at my sister’s perfect tableau. I’m not sure if her dolls have ever even spoken to one another. I ache for them.  How can they be happy if no one ever gives them voice? I send them a comforting thought,

Don’t worry, one day I might inherit you. We’ll make up some great stories, you’ll love it.

And I bounce out to the kitchen for a slice of Mum’s banana cake.

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The hubster and I were having a chat today about actors. I was telling him all about being at a rehearsal with Zed the other day and how something really struck me. It occurred to me as I watched these talented people working and re-working their scenes, that acting is a noble craft.  Ancient and important.  Those who have the talent for it are able to communicate so much through acting.  Dramatisations and enactments have passed our histories and culture to the wider community since time began.  And not being an actor myself, it was quite a revelation. I saw how clever, and how important it is that human beings have always done this.

And it made me quite proud of my wee boy, following that inner drive of his up onto the stage.  Up there with the professionals, listening to direction, pondering before a serious nod and “Got it.” Then doing it,  a nuance of difference here, a grander gesture there. He’s been cast in a play by the Auckland Theatre Company.  His first paid acting gig. We’re all a bit star struck by him.  He gets his acting passion from his Great Grandmother.  But in the generations between, none of us have travelled very far into the thespian realm, for me, it began and ended with my cast of dolls.  It is a kind of inner force he follows; undaunted by audition after audition, never knowing if this one might be the one.  I admire his ability to take rejection and keep trying. Mostly, we sit back and watch his acting interests unfold.  What will be, will be. Seeing him act is such a joy for me.

These photos are from when he acted with a troupe of older actors.  He played the young Astynax in the Trojan Women (a Greek Tragedy) opposite his Great-grandmother as Hecuba.  He is pictured below with his on-stage mother, and right, playing dead.

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So there we were, Hubster and I,  talking about that ‘thing’ actors have, the way they can travel outside of their own self and adopt other personas.  The way they can make that so believable.  Hubster lamented his lack of ability to do that, even when playing as a kid. He said that as a child, he preferred setting up his Action Men to playing with them.  It reminded me of my sister’s dolls. For me, it was always the opposite.

I would race through the boring old set up; using hardcover books for dolls house walls, positioning furniture so that it would hold the walls up.  And boom, straight in to the most recent episode. Would Sandy ever forgive Mandy for wearing her striped velour tracksuit?  And would another male doll ever join the action? (The answer to that was no.  The only man-doll I was allowed was a Mr Sunshine doll, because he came boxed with his legally married bride and infant child).  Mr Sunshine got to play more characters than just his own; given the scarcity of males. He was far more diminutive than the Amazonian’s living in my makeshift dolls house, but he didn’t mind.  He was good like that, generous with his affections.  It was perhaps not quite what my mother was hoping to achieve with the introduction of a safely married gentleman doll.

But the action, the playing, the creating of the story!  Oh, I loved that bit!  I wish I could still play like that.  Hubster commented on how these days, I like the kids to have their toys ‘set up’ and ready to go before a playdate, to maximise the amount of time they can be ‘in the story’ with their buddies. Likewise, I like things assembled before they go under the tree, because spending Christmas day fiddling with tiny screws and batteries drives me crazy. For him, that spoils all the fun. For him, the set up, the assembly, is the most fun part.

Go figure. I guess it is like so many of the personal preferences we have.  Are you a ‘set up’ kind of person, or a ‘play’ person? Crunchy or smooth peanut butter?  Sweet or savoury foods? Summertime or Winter wonders? Indoors or outdoors? Toilet roll over or under?

And what are your thoughts on acting? Have you ever done it?