Monday, November 28

if i talk about a rubber band, they might understand.

I like to think of myself as a rubber band. When I was born, I was an uber flexible rubber band who could spring back into original shape with ease after being stretched. I would play hard all day, and then have a good night’s sleep: by morning I was ready to do it all over again. Stretch, relax, stretch, relax.
When I tuned 16, I began stretching my band far – really far.Too far.
I rose at 5.50 am every morning.
By 6.30 am I was leaving the house for the train station.
By 8.30 am I was in Melbourne, sitting in my first class of the day.
At 4.15 I was doing my homework on the train home.
By 7.00 pm I’d eaten family dinner and begun my 2 hours of flute practice.
At 9.00 pm I was making lunch for tomorrow, about to shower and crash into bed.
I repeated this sequence of events every day for 3 years.
 I couldn’t seem to find time to relax, to let myself come back into healthy shape. I abused my elasticity. I just kept straining and stretching myself, until I was breaking and brittle. Perhaps another rubber band could stretch farther than mine, but that isn’t the point: I wasn’t taking care of my own band’s capacity.

Recreation we must have. Otherwise the strings of our soul, wound up to an unnatural tension will break. 
           - A quote from a beautiful book by  Elizabeth Prentiss-
The third year of extreme stretching, I snapped. I’d stretched the band too far, and it wasn’t about to ping into shape anymore. It lay lifelessly waiting for a repair. Eventually with the help of doctors, it was rejoined....but alas, it is no longer stretchy as it used to be. It simply can’t cope with stretching like before, and is on the verge of breaking again if I’m not vigilant about protecting it.
Most people are capable of going to work for 8 hours every day, seeing some friends, cleaning the house, doing the shopping and going out for enjoyment. I’m not – I simply do not have the resources to do those things anymore. If I do too much I feel I’m going to snap again and there are speedy and awful results:

  1. I lose the plot emotionally. I have a panic attack. I cry because I feel helpless and worried that I will snap again. 
  2.  I become physically exhausted. I have a headache, a neck ache, faintness and an irritable bowel. 

It has become a very central goal in my life to avoid bringing about these feelings for my sake, and for the sake of my husband! And I have learnt that by managing my life extremely carefully, I can keep myself from experiencing these issues.
Pacing. That’s what we call it. And to be honest, I find pacing one of the hardest things about being’s a daily battle, my brain wants to do so much more than my body... it’s infuriatingly limiting, and often misunderstood by others. 

I know what my body can handle at this current stage in my recovery:
Three big events per weeks.

  •  Alexander Technique lesson. This requires me training into the city and training back – a 3 hour trip. 
  • Going to church. Social situation and concentration required, so extremely tiring. 
  • Spending time with a friend. Great for my emotional health, often results in headaches and temperatures if more than a few hours.

So those are the biggies. They fit around the nonnegotiable regulars which are exercise every day, 1.5 hours of flute practice....and lots of wife-ing of course.
When my week looks like the one I have just outlined – I can cope. I can even feel well when I’m at home. I don’t feel that I’m being stretched to dangerous levels.
But often my week looks like this:
Person no. 1 wants to catch up as we haven’t for sometime; they are kind and want to encourage me in my sickness. They are likely to stay for over an hour which will be exhausting.
Person no. 2 is my close friend and I feel inspired and rejuvenated when I spend time with them.
Person no. 3 drops on me at the last minute a ‘social thing’ I should be doing.
Suddenly I’m in turmoil. I can’t cope. I feel utterly guilty because I should catch up with Person no. 1 and they are so keen to see me, even though personally I don’t want any more social time. Person no. 2 I really want to see, but I can’t do both so how do I decide? And Person no. 3 should know that I can’t do last minute things (last minute being less than a week before) because that would require me to cancel some of the ‘big things’ in my week so that I can attend without suffering for it. I know that if I say ‘yes’, I will suffer and feel ill – yet I have fear of saying no because I hate being a piker all the time.
I’m not feeling sick right now....but I will feel sick if I do that thing, if I say ‘yes’.
Pacing is actually about not letting myself get to the sick/can’t cope stage. So I have to say ‘no’ as a precaution. I have to even choose to only see people who are ‘good for me’ because the other people use up precious energy...more feelings of guilt.
So when it comes to organising my week, I struggle. I agonise over every little decision and fine tune my week until it’s manageable. Sometimes I fail at that, and suffer for it. People are tiring, some more tiring than others, so I have to monitor how long I see them for – and awkwardly set specific times for the end of visits. People who arrange things late make me on edge: I can’t do it if I didn’t work everything else around it. When something is canceled, I literally do a dance. I am overjoyed that I can just stay in my little house where I have the most chance of feeling well – and concentrate on exercise and flute.
How I love feeling well! But how I hate how few things I can do for others, and what a big deal each thing is – I wish I were better at pacing. I wish I were more thick skinned in saying ‘no’– I am so blessed to have three wise people who spur me on...who say to me, “you just have to do it. It’s the only way you’re going to get better.” Sometimes, the sad reality is that I need to sacrifice events and relationships so that I can feel well and continue to heal and recover.

Please let me protect my rubber band, don’t make me stretch it too far.

Friday, November 18


I have just returned from a delicious few days holidaying on the Peninsula with my hubby. The sun shone, the sand was perfectly crumbly, and the food complimented the views. Even my body was considerate to me, despite the lack of sleep, exercise and diet. We had time to wander, and lie on the beach for hours (and moisturise our pink tender wounds), and day we were looking back at all the practical disasters we’ve had this year, as we’ve ‘adjusted’ to being grownups. I haven’t laughed so hard in a long time. 

Out evening stroll along the beach...
About two to three times per week for our whole married life I’ve said to Ben, “I just wish I was a little girl again.” Anything but being an adult would suit me. I’m not really sure if my being well would alter these thoughts because I became sick at 18, which is pretty much the start of my adult life. As I have never asked anyone else if they wish they were children again too, I am ignorant as to whether these feelings are common or absurd.
My childhood best friend always wanted to grow up, but I was perfectly content with being a kid. I had grave fears about all kinds of adult things. Once when I was small, my brother and I had to share a double bed when we stayed the night somewhere. I knew that if a man and a woman slept in the same bed, the woman might get pregnant - and I was very concerned that lying next to him would result in my conceiving. What a fearful night! A few years on and I used to lie awake worrying about how to get a job when I was an adult. Could I just walk in and ask for one? And if I had to write a thesis one day, how would I conceive an untouched topic? I was sure I’d be bereft of ideas. {Perhaps this is the unique concern of children with a parent writing a PhD}.
 And actually, I don’t look back and laugh at those ‘childish’ concerns – because, my oh my, I have found life to be just as complicated as I feared, if not a little more. Maybe some people do slip gracefully into adult life – but not I. I have taken my clumsiness right along into this next stage. Of course, I am but a mere 20 year old and there’s a chance I will adjust in the coming decades.
I moved out of home when I had just turned 18, a thoroughly respectable age, though I returned every weekend... But I shall make a confession. I used to feel quite proud of myself if I managed to get to university of a morning, dressed, fed, and with phone, wallet and keys. It blew me away that I was capable of cooking, washing and studying! I should qualify that I cooked one big meal once a week, I took most of my washing home, and phoned dad whenever there was a problem. I managed to lose my phone on the train. But my then boyfriend came and rescued it. I was harassed on the train, but then I called my dad. I left my flat keys at home, but then my flat mate let me in. I forgot to report to centrelink, but then I went in and restored it. Yes, there were issues, but overall I didn’t make a complete fool of myself.
Married. I really thought that my year out of home had prepared me for it. First there was us owning our first car, our darling Brum, who is older than us. Ben does most of the driving owing to my legitimate fatigue, and my fear of speed {by speed, I mean anything faster than 50kph}. I hate to admit it, but we have had the call the RACV no less than 7 times in the past year. Seven. Admittedly, one of those instances was a legitimate break down. The rest were owner error. Keys locked in the car, Ben’s favourite. He likes to apply that one to rainy days so that we get to hug each other under a tree for 2 hours straight. Lights left on. That’s a favourite for rainy days also, or prolonging evening dates. Running out of fuel in the middle of a three-lane round about... This is excellent for extreme humiliation and dreaming of holes in the ground.  I added to our car disasters a parking fine – I only overstayed by 3 hours, but hey. Fortunately, my letter of apology was accepted and although I shouldn’t “expect such lenient treatment in future”, we were let off. 

Our rental really was going well for a while there. We payed our rent every month. We cleaned the house for inspections. Then I felt the urge for an indoor furry friend and chose one with destructive qualities hidden behind the floppy ears. Winter Joy. But we never say the ‘Joy’ part because that just isn’t an appropriate name for her. I convinced the real estate agents that rabbits really were so very small and docile they couldn’t harm a fly, wouldn’t make a noise, and that she would be supervised at all times. {I believed all I wrote at that time}. She soon decided that bathroom door, kitchen skirtings, borrowed books, furniture, cords.....and worst of all, flawless curtains were more satisfactory foods than hay and carrot. She is the craftiest of creatures and sneaks out unawares to do her naughties.  Oh the mortification!!
The first time we had a couple in for dinner – well that was awkward. The meal was really not as good as hoped, we dished up by slopping food all over the plate and table, and I forgot to offer them drinks because I was so busy talking. Still trying to figure out how to be a hostess, it’s really must be something you learn. I have found a couple of “absolutely delicious recipes on the internet” as I told Ben, and with huge enthusiasm tried to cook them. When Ben sits there silently and then says, “It’s interesting,” I know there is something wrong. Disgusting. A burnt tea towel here and there, me dropping everything, and the oven left on overnight twice.
Other incidents include the gardener who gave me an earful about my overgrown garden (when I was so sick and didn’t know that tenants had to garden).....and my resultant crying in the bathroom to hide from him. Feeling awfully uncomfortable when we stayed in our first hotel, with no idea what to do - We were so out of place. Never knowing what to write to official people and friends when it comes to tricky issues.
The amount of times I’ve wanted to curl up in a ball and come out a few years later when all has been forgotten is uncountable! It’s all incredibly complicated; every new situation I feel like I’m drowning. Ben says this to me when I am overwhelmed by how complex it all is:
Firsts are always hard, but seconds are better.
And it’s true. We haven’t had a car mistake for ages, or a bad meal...I’m practicing the hostess thing. I’m gradually (as in, handicapped snail pace) learning not to take people’s comments personally. Every time we have a 2nd or a 3rd chance at something it’s ever so slightly better than that first mind shuddering time. And sometimes we get past our embarrassment and just laugh it off which definitely alleviates some pain.  
The other wise thing that Ben reminds me of when I am in one of my, “I wish I was a little girl” moods is that if I were a little girl, I couldn’t live with the man I love, or have adult relationships, or enjoy responsibilities. I’m not in Neverland, and when I am in rational unmortified state, I do truly like being a grown up. Never ever give up!

Wednesday, November 9

POTS for dummies

This day, the 9th of November, was a momentous day in the life of me. I swam a kilometer - 40 laps. This is not just momentous because I am the un-sportiest, clumsiest, and most water fearing girl I’ve met. It’s momentous because 4.5 months ago a specialist told me that if I strenuously exercised every day, I would regain my health. And he spoke to me of a much improved patient who swims a kilometer four times per week, to which I felt a certainty in my stomach that I could never do anything like it.
Try to picture this situation. Me, sitting in his office, skinny, weak, and tired – so sick that I had wanted to lie on the floor in the waiting room before seeing him. He knew I was here because I had been diagnosed with Chronic Fatigue Syndrome, and because a friend had recommended I see him after she had been re-diagnosed and consequently recovered. I certainly didn’t expect this specialist’s first question to be, “Are you abnormally flexible?” Really, you’re asking me about my flexibility, how on earth does this relate to my being too sick to go do anything? I delayed my questions, and said that I was somewhat flexible, and had been able to do the splits when I was dancing. He asked me about other unique stretchy positions I might be able to reach, and we tried some. The conclusion was that I was abnormally stretchy, and he had known it from shaking my hand at the door, as it crumbled in his as it compressed.

Then we spoke for a long time about things like my having had Epstein Barr Virus two years ago, my circulation problems, and all the illnesses in my childhood and family. Next we discussed the odd symptoms I have. How surprised I was when he asked if I ever had a sore jaw, and a million other strange things which he saw regularly in his patients. I was overwhelmed by the fact that so far he had told me all that I was feeling, and I had told him nothing!
It came down to him explaining that being ‘abnormally stretchy’ results in stretchy blood vessels too. When the blood goes down into my legs, it stays there because the vessels enlarge instead of remaining firm and pushing the blood back up. As I have been sick and lying down for some time, I have no muscles to help push the blood up either. Therefore, I don’t get enough blood to my other vital organs (i.e. my brain) – hence I always feel like I will faint, and so sick. He really believed that most of my symptoms would ease if blood could get around; though he said gut problems he did not yet understand.
Next he told me that there is no cure for making blood vessels less stretchy. Grrrrrr. But – if I strenuously exercised every day, I would strengthen all my muscles and they would then help the blood to move around. Nice theory doctor, but how am I, who struggles to stand up, supposed to exercise? And won’t it make me worse? Every doctor has told me to rest!
This is what he said: You can’t make your blood vessels less stretchy, and you can’t make them stretchier. If you believe this is the cause of your problems and they can’t be made better or worse, then exercise can’t make you more unwell. Believe me – look at all my patients. You will feel some small improvement in two months.
So here began my somewhat skeptical yet very determined entrance into the world of exercise. I began with just six laps in the pool, completed in a speedy twenty minute time frame. Exercising horizontal was a requirement, as this meant the blood wouldn’t pool in my legs. I got an exercise bike. I bought weights. I recorded my minor achievements in my diary. And ever since, my days have revolved mainly around exercise, with all other pursuits forced to fit around that. I have turned into an exercise junkie since being diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Do I enjoy my exercise? Well, let me ask you you enjoy exercising when you feel sick?
The test came that first day after the appointment. I was lying on the couch with a terrible headache and sore stomach, not to mention exhausted. I absolutely didn’t think that it would be wise to exercise – everything would get worse from putting my body under the strain. It so much less appealing than it had seemed before. With much coaxing and encouragement from my husband, I very distrustfully and resentfully donned my togs and went to the pool. I swam six laps on a kick board, and it felt like I’d just danced for three legs ached.  I emerged, and to my great surprised, my headache had left me, my stomach felt normal and I felt very physically demolished, yet good.
Please don’t think that I was convinced after that episode. I was not. It took a lot more coaxing and groaning and tog donning and flailing in water to convince me that this would help. I am not remotely sporty, and I detest exercise, if it’s not performed in a classical ballet class in leotard and bun. But, I am now fully convinced. The only problem is that I still kick and scream at the idea of going for my swim, hopping on the bike, doing my weights. It just doesn’t get any easier leaving my warm snuggy home to go and work up a sweat, and huff and puff.
My doctor was right however. I have not gotten worse; instead I have improved more than I dreamed I could in this time frame. No, I am not cured, and I have plenty of crappy days. But I’m making tiny steps and rejoice in each one. It feels like just yesterday I was in awe of the sick girl who could swim a kilometer, and today I reached that goal. Now I’m aiming for two.  

Ps. A few facts about my illness for the curious:

- I was born with stretchy blood vessels, so this is something I will always have to manage.
- It seems that it was bought on by my familial history, Epstein Barr virus, and an inability to recover from this as I was overworking and stressed.
- I was tested with a 72-hour heart monitor, which revealed that my heart rate is good when lying down, but rises abnormally high when I stand. This confirms how much stress my body is under when I am upright and is a definite sign of orthostatic intolerance.

Thursday, November 3

making blah days count

Blah days are impossible to escape, and I highly doubt a human being has ever had a life free of them. As you may have gathered from reading about my life, I have had a few blah days slash months. I would define them as days where it seems impossible to carry on with life’s normal activities. You don’t have to have CFS or POTS to know what I’m talking about – bouts of depression, the flu, the headache, unstable mental state, burn-out, heart break and other debilitating ailments fall into this category. The key is to accept that this day will not resemble other days, and for your mental and physical well being, it will be best if it doesn’t. (If you are chronically ill replace ‘day’ with year or decade).
While it’s good to have a strong sense of duty and self discipline, it can lead to strife if there is no off-switch for the case of legitimate ‘blah days’. I often forget that self discipline is just as necessary for inhibiting my desires to overwork as it is for motivating myself. I do Alexander Technique lessons (which I will deal with in another post) and my teacher used to encourage me to cancel lessons just so that I learnt the skill of inhibiting my compulsion to ‘do the right thing’ to the detriment of my body. You gain nothing by pushing through, because chances are you will crash and burn in the end, and spend much longer recovering from that than if you let yourself rest now. My parents did tell me this, but I decided to learn it the hard way.
 My bossy and over developed conscience has significant issues with days out of routine. It drones in my ear over and over, “You need to do your flute practice!” or “If you don’t do your exercise today you’re a hypocrite for saying you exercise six days a week” e.t.c. So I have to attack my conscience with a stream of logical statements. (I should be a psychologist). Pow, I hit it with truths such as; a day off practice will do absolutely no harm in the long term and I’m not prone to laziness. The latter part of that statement is crucial – if your feelings are out of character then you know you haven’t got a bad case of laziness. Do be prepared for repeated attacks throughout the day, but keep firm and courageous. Bam, Pow, just hit them hard. Annihilate them. It helps me to have a friend to encourage me that my decision to take it easy is wise. In the past, the nasty buggers (guilt thoughts) have made me doubt if I’m even ill...or is it just in my head?! I used to test if I was for real or not by going flat out like a well person. Usually, I was shriveled up in bed by lunch time or before, unable to move for many hours. The proof was comforting if a little uncomfortable.
So, sense of duty has been switched off, thoughts have been radically destroyed and you wonder how to use this period of time...

It’s crucial that you don’t get bored. 
Boredom + said ailment = crying mess of a person. 

-  Pillow, blanket, teddy bear and classical music is my regular.
-  Drink cups and cups of tea.
-  Watch an inspirational movie, though not too sad in case it propels you into further misery. I suggest, “The King’s Speech.”
-   Sit in the sunshine wearing very little. I believe the sun has remedial benefits far greater than production of Vitamin D.
-   If you can read and have a good book, do some of that. I find psalms sad and real and soothing. Audio books are wonderful inventions for the seriously ill.
-  Go for a gentle stroll and literally smell the roses. I often stop Ben in our walks and say, “Wait on, I’ve just got to smell this rose here.” It’s always worth the time!
-   Create something so that you have a sense of achievement - for me that is knitting, sewing, card making, painting, collage...
-  Spend time with someone whose company is enjoyable and invigorating; someone who doesn’t mind that you’re not vivacious and lively. For me that’s my husband who listens and makes me smile, and my best friend who makes me laugh hysterically no matter how ill I feel.
-  Write me an email, you will be sure to get a reply.
-  Read about someone who is suffering more than you to shift your focus. When I read about paraplegics, those with mental illnesses and cancer I just go “wow, I’m here, I’m moving...I’m just without energy. I’m so grateful that my ailment is so mild in comparison.”
-  Think about life. Think about what you’re doing here, and what’s important. I did a lot of thinking and decided that quality of life is a lot more important than success in life.

Surviving and persevering really does depend on how you use your down times – I’ve had days where I let myself lie bored and despairing for hours on end. I can assure you that I got to the end of those days and declared them wasted. None of these suggestions can take away the pain, but they have helped me to make the blah days count.