Sitting Out Swimming Sports

I stood at the checkout with my son’s warm hand in mine. I could see, over at the next checkout, another mother from our school. Her son was with her, too. We didn’t talk, but there was a wry grin exhanged between us.  We both knew why our boys weren’t at school.

Today is the Swimming Sports Carnival.

I phoned in his absence this morning, mumbling something about his ears. I took him to the doctor soon after, she looked in each of his ears, hmmming and adjusting the ottoscope before confirming what I already know. His ears are fine.

I remember one of these days a few years ago. My mildly dyspraxic girl, still grappling with learning to swim, was standing terrified beside a six foot deep pool. It was competition day. She was crying and begging to be let off. The teachers responded with grim determination. The bank of stopwatch officials waited with barely disguised impatience. The whole swimming complex seemed to sigh with frustration. I was not allowed to go to her, poolside, to help calm her down. The whole school waited until she eventually got in the pool. An older girl was already in the water with a pool noodle, waiting to tow her the length of the lane. What is the purpose of this kind of showy display of ‘you WILL do it, even though you can’t do it?’ Who does it serve?  Near the finish line, myself and some of the sympathetic parents around, erupted into applause. And my beautiful daughter emerged from the water, dripping with shame.  She smiled a wobbly smile at me and slunk back to join her class on the bleachers. I went out behind the swimming pool complex and cried for her. It was an awful experience.

This picture is from last year, when she was delightfully astonished to place first in her heat.  One day, I might see a similar smile on my son’s face, when he swims well enough to enjoy competing. But this year, he and his perfectly fine ears are sitting out the indignity of race day.

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It has always baffled me why P.E teachers are so hot on participation. Why joining a competition even if you are not competitive is such a religion to them. My kids are both involved in sports, both are involved in their schools’ wider culture. I entirely endorse the idea of being there to support your classmates, your school house, your peers. And this is why it bothers me so much.  I have spent too much wasted time on the phone talking to the PE staff at school about this. Going around in circles. Banging my head against a brick wall.

The compulsory nature of Swimming and Athletic sports days (and the dreaded Cross Country) means that you are effectively forced to stay away if you are not going to participate. Or lie about an injury or illness that prevents you from swimming or running. It’s madness. To me, that is teaching kids something far worse than not racing. It’s saying that if you are not like those people who enjoy competition, you should hide, you should make excuses.  It’s saying that you should suffer for a day because you are not like them. Suffer in competition, or suffer in silence at home. It’s saying that your voice of encouragement and cheering from the sidelines is only valuable if you have also competed. It’s bollocks.

We are not all the same. I would never dream of asking my kids to compete in showjumping horses until they are competent in the saddle. I would never expect a dyslexic child to enter a spelling bee, or drop someone with agoraphobia in the middle of the desert. I think there is a cruelty to the one-size-fits-all environment of our Education System in relation to PE. And I think it needs to change.

So today, we are sitting out the Swimming Sports in silent protest.  I feel resolute. I know I am not the only mama out there feeling this way today. I sit here in solidarity with all of them. With you, if you have ever felt the frustration I feel.

Here’s to the others. The non-competitors, the slower starters, the ones who always bring up the rear, to the ones whose genius is not defined by physical test of speed; whose gentle souls are built for fairer things.  They are not failures for not being sporty, they should not feel ashamed. Sporting prowess is simply one kind of genius. Take it away Mister Einstein.

fishtree

 

 

 

Jenna Lovell -Instinct & Intuition

Welcome back to the ‘Meet my Peeps’ Guest Series. I met Jenna Lovell through an online Chronic Illness bloggers group set up by Carly Findlay. Jenna lives in Tasmania, a part of Australia very dear to my heart. When I put the invitation for my series of Guest Posts, Jenna jumped in.  I am so glad to bring your her words and wisdom. Through her blog, coaching with clients and speaking at events and conferences, she shares her story of living with a rare genetic illness and how she has changed her health and life. Jenna loves mail, so pop over to her corner of the internet and say hi:
www.mymissingfactor.com
jenna@mymissingfactor.com
https://www.facebook.com/mymissingfactor
https://instagram.com/mymissingfactor

Thanks Jenna for contributing, I really value your input!    -Rach

The biggest thing that has changed for(2)

I was 16 when I was diagnosed with a rare, inherited bleeding disorder called type 1 Von Willebrand Disease. Like those with haemophilia, my body doesn’t produce enough of one of the essential clotting proteins, and I’m susceptible to bruising, nose, throat, gut and colon bleeds, and as a female with this diagnosis, my periods are severe in every sense. While I’d definitely invite you to take a read of my physical symptoms, Rachel has invited me to share with you my other experiences – managing the mental, emotional and spiritual challenges having a genetic illness throws your way.

This story really starts long before my birth, with my mother’s experiences. While she experienced all the same symptoms I do, she was never diagnosed. She had to struggle through monstrously difficult periods, excessive bruising and other symptoms without a diagnosis or a hint of medical support. I’ve found out in recent years that for women of her generation, that was far from a rare experience (though thankfully its pretty rare now here in Australia). Fear and anxiety about engaging with doctors is common among those of us who had to wait until later in our lives for a diagnosis, which makes getting care and support an anxious task, despite its necessity. So after a few years of horrible periods myself, the decision was made to ask doctors about it, but that definitely brought nerves. We knew my mum had never been given the attention she needed, and had no idea if I’d get the right support or not.

Luckily, my GP is fantastic, and referred me to two equally skilled specialists who dispelled any fears or concerns about their approach, and were able to provide me with my diagnosis. Of course being a teen at the time, my struggles didn’t stop there. It took around 2 years to find the right combination of medications to manage my bleeds and for them to settle down to the most under control point I’ve had them, but in that time, I had a lot of time out of school, I missed social events with friends, I had several teachers talk to me about my attitude and commitment to school work, which prior to my diagnosis I had no good reason why it was slipping. I had the worst of my symptoms during the most important two years of high school (years 11 & 12), so I have no doubt my illness during that time impacted my final grades. Its only been in the last few years that I’ve made progress in creating and maintaining new friendships – after struggling with this in high school due to my constant absences and subsequent loss of friends (and even relationships with my relatives). Even after being diagnosed, I struggled for a number of years to explain my diagnosis and symptoms given the primary issue I deal with is my menstrual bleeds. I felt embarrassed to talk about the details, to mention my condition to others, even when it was needed because of the social taboo about talking about our reproductive systems.

It will come as no surprise to you that as a teen and young adult this put a massive pin in any plans to have dates! I often find it ironic that the primary class of drugs used to treat female bleeders is contraceptives – trust me, with periods like mine, you don’t spend time thinking about sex or anything related to it! I was also scared and worried about telling boys and men about my diagnosis and symptoms for a long time – would they understand it, would they think I was gross, would I have to explain far more to a male than a female, thus extending the time I was talking about my periods to a male, probably in public!

I also went through a period of almost 10 years after my diagnosis that can only be described as my cognitive dissonance days. While I don’t skip taking my medication, for roughly a decade, I continued to have period-based symptoms, large unexplained bruises, and an unrelated but constant string of colds, flus, chest infections and even a few rounds of pneumonia. On paper, I may have looked ‘healthy’ – my weight was in normal ranges for my height and age, I was diagnosed by treated for my bleeding disorder, but I was ignoring a lot of signs. Clearly, my immune system was struggling, and I just didn’t feel great – inconsistent energy and frequently tired, struggling with an undiagnosed gluten sensitivity, and I felt lacking in strength, both emotionally and physically. At the root of this was deep seated apathy – I took no care of my body and I didn’t listen to any of the (now glaringly obvious) signs it was sending my way. I didn’t care about my health that much because I didn’t think I needed to.

So what changed for me?
A number of new experiences in the last few years have seen me revolutionise my relationship with my body, health and myself:

  • I’ve become connected with the patient support community for people with bleeding disorders. I have to say this was a turning point in me finally accepting my condition and myself. There’s nothing like other people who go through what you do, they just get it. Some of the people I trust most in the world come from that community, and I can say I wouldn’t be the same without them.
  • A local Hobart-based business, Barrecode, also has a lot to answer for! This low-impact strengthening workout has not just seen my physical self improve its condition, but I now also trust my body to do physical things, and know it can be challenged and not fail on me. The owner, Christie, also introduced me to new eating philosophies that have supported my exercise and general health, but also allowed me to better understand my body and its needs.
  • Meditation. Bet you’ve heard that one before, but by gosh has my personal quiet time made such a difference! In a physical sense, I use it to manage pain, but its also been fundamental in me coming to a new relationship with my condition, with experiencing pain, and developing my intuition which has helped me make better decisions in all parts of my life.
    The biggest thing that has changed for me? I now trust myself – wholly, completely and over anyone else. I trust my body and I can work together to make me healthier every day, and my instinct and intuition will always provide the best outcome.

-Jenna Lovell

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

Trapped

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“I hope you don’t feel trapped”.  I say to my hubster, blowing the steam off my cup of tea.  It’s the quiet time of the evening.  We are alone in the living room, we’ve been talking about our days.  We’ve discussed future proofing the next new car purchase against the possibility of needing mobility wheels for me. We’ve talked some more about IVIG and our optimism about it, we’ve discussed side effects and risks.  We’ve mourned the end of our channelopathy hopes.  It’s not an uncommon intensity of night time conversation for us.

And then, I see him objectively, for a split second.  This lovely big guy, greying around the temples.  So tired.  So sad.

“That’s exactly how I feel,” he says.
I panic when I hear that.  I think I was hoping for him to say “of course not” or “-whatever!”.  But I can always rely on him to be direct.  It’s his talent to cut to the chase.  My heart hits the floor. In my head, our conversation escalates to custody proceedings in T minus two seconds.  He wants to leave but he can’t.  Oh no!  He’s with me out of obligation?  I should offer to leave him.  Give him his freedom.  No!  I love him!
He watches me spinning into divorce infinity inside my head and reaches out his hand.
“Rach.  It doesn’t mean I want to leave you.  It doesn’t mean I don’t love you.  Differentiate. You are not your illness.  I don’t feel trapped by you.  I feel trapped by what is happening to you; to us. And I am not going anywhere”.
I stare at him.
He is extraordinary.

Here’s to all the partners.  To all the people shouldering big burdens just because they love someone who is sick. Here’s to the parents, the caregivers, the kids and the circle of people who surround us.  We are not sick on our own.  We are sick and the consequences of our illnesses are shared with anyone who loves us.  We wish it wasn’t that way.
We wish you weren’t trapped too.

Here’s to the ones who love us.  The ones who aren’t going anywhere.
You are beautiful.

Thank you.