I've written about getting on and falling off the exercise wagon a few times now. Before I met Adam I was really enjoying it. I was committed - getting up early to use the elliptical trainer at the gym, and I loved the changes to my body. I made modifications to suit my skin. And I was glowing.
But then I found myself without a car, with little time, the endorphins I got through pushing the pain barrier replaced by endorphins of love. Then I went overseas. And I ate. I came back and I ate some more.
I fell deeper in love, content to sit on the couch. I've written more - that never takes place on a treadmill - always in bed!
I got really sore. Last year was one of the sorest of my life.
Since early 2014, I've been to the gym more times to use the shower when mine was broken than to use the equipment. And that shower made my feet sore - I picked up some nasty from the communal recess.
So many excuses (and legitimate reasons) not to move. My metabolism has changed since hitting 30.
And lately, I've felt fat.
I look in the mirror, unhappy with my body, not feeling I'm the right size for me. I've never had this issue until now. I've always been ok with my size and shape.
My skin hurts as it presses against bulging fastenings. My arms wobble and my tummy is far from the toned pride I had in my early 20s.
Fat hasn't been a way I've ever described myself. And I know worth is not determined by dress size or body shape. So with feeling fat, I feel guilty, because I am aware I have thin privilege.
Most sadly, I've been looking at other women and comparing myself - thinking I'm not as slim/toned/gorgeous as them. Which is completely stupid of me because that's not what I'm about. I'm about loving my body and appearance and encouraging others to do the same. I guess I have the same vanity as everyone else.
I've never compared my appearance or been concerned about my size because I thought that was trivial when I had health issues to manage. Plus, I feel comfortable with unconventional beauty. And I feel it's an expectation I am happy with myself, considering I label myself an appearance activist. But now I catch sight of a tummy roll in photos and I want that conventional ideal. Again, the guilt nibbles.
As the reality of fitting into a wedding dress has drawn closer (less than six months!), I know I've got work to do.
All of this negative self talk aside, it's for my own comfort that I need to tone up.
So I've been gently easing back into exercise and eating better. Not back at the gym yet, but once I settle back into my new job and manage my time better, I'll go. I will. I want to feel that rush again, to kick those goals of running through songs and for my skin to glow. I want to have more energy for life. Because burning energy gives me more energy.
This last month I've been on long walks, short runs in my neighbourhood, done lunges and squats in the park and skipped like it was 1989 when I did jump rope for heart. In my previous job, I walked to and from work each day. And I've done incidental exercise, walking to get groceries instead of driving there.
I feel better. Happier about my body, even.
Not liking my body is out of character. I want to look in the mirror and see what my body can do, see tauter skin, and see what Adam loves about it.
I've stocked up on cute active wear - it makes me want to move. Proof looking good can make us feel better about ourselves.
I took a cheeky selfie in my active wear recently, and liked what I saw. My skin was clear and my body felt good - more toned and on the verge of a glow. It's a start.
The impostor syndrome haunts me. "Is this my life? Am I really writing and speaking about my passions?", I sometimes ask. Am I qualified? Am I nice enough and a good role model at all times? I keep thinking I'll get caught out. Not that I think have anything to get caught out for, but I worry that someone will comment on something that I've written, saying 'I saw her once, she was really rude to this sales assistant'. I am flawed too.
I remind myself that people won't always like (which is different to won't agree with) everything I write, and sometimes I tire of having to validate that stigma and intrusive comments really do happen. But that's ok. Because I am ok with myself.
Sometimes I worry about being a health blogger - especially this week. It’s a huge responsibility to have people read about my life and take advice or comfort from it. I want to show my integrity.
There's a rise in health and wellness bloggers - many of which have reached celebrity status. And celebrities have now reached medical practitioner status. As my friend Anne Marie said, introducing this article, "get your medical advice from a doctor, not from a celebrity" (or blogger). These people are not qualified to dispense medical advice or treatments - they are social media celebrities.
"What's dangerous here is not just the people who damage themselves with their inauthenticity but the damage it does to those following, admiring and emulating."
If you are following advice from an illness or heath blogger, and you think something doesn't add up, check your facts. Ask your doctor. Seek qualified treatment before it does you harm. Emma Stirling, registered dietician, has written a great blog about reputable information on cancer treatment here.
I don't have cancer and I don’t practice alternative treatment over traditional medicine. But I do have a lifelong, severe chronic illness and people look to me for advice. I feel that I have a responsibility to you, my readers and social media followers, never to provide advice that might damage your health. I always write my truth, which doesn’t mean it will apply to all readers.(And I don’t write this to discredit myself, but in the interests of disclosure, I am qualified in Communications and eCommerce, and only have lived experienced with Ichthyosis and disability.)
I always want to be authentic and transparent. I want you to know that some of the donations for the Australian Ichthyosis Meet have now gone towards the Foundation for Ichthyosis and Related Skin Types. The me that you read on my blog and see on social media is the me in person. Sometimes I put some flowers in the shot for a photo, but it's all my life.
And I never want to sell you treatments or life-practices to help Ichthyosis (or any other illness). I won’t be paid to promote pharmaceutical products, or feature affiliate links to over the counter products. (Sometimes I will promote non-skin related products through a sponsored or affiliated post or ads, but I will always disclose up front.)
I am not a doctor. Or a psychologist. I can't provide a diagnosis. There are many types of Ichthyosis and there are many treatments that work differently for different patients. What works for me might not work for you or your child. And I don't want to risk that. And I will never claim that going to a hot spring or taking a juice cleanse will make you well.
I believe in, and promote healthy eating, but that is just one part of health management. I never want to seem like a medical authority. While eating whole foods makes me feel good (and has a positive impact on my skin), my Ichthyosis is still here - it’s not cured because I eat salmon and cheese regularly (they both give me GREAT skin!) Sure I can share what's worked for me, or how I cope emotionally, or write about my experiences of discrimination, all of which you may relate to, but in the end, people need to get the accredited help they need. I have written about my treatment regime, but I have and will always suggest you seek medical opinions before trying new things. I will also suggest you see a counsellor.
There has been a few times that I have been contacted, urgently, to provide advice about a treatment for Ichthyosis, or even a diagnosis. When I have told them I am not a doctor, and that I don't live in their country so I'm not even sure if the creams I use are available where they live, and suggested they talk to a dermatologist, they dropped me like a hot potato. I was not useful to them.
Last year I was contacted by a woman who expected too much of me. She had diagnosed (and then undiagnosed) herself from my explanations of Ichthyosis. And she wanted more emotional support than I am qualified for, and when I told her I couldn't provide it to her, she said I'd disappointed her. She said I'd put myself out as a role model, and she saw me as a support person, but didn't provide. My heart sank. While I know I didn't fail her, I still felt as though I did. It upset me a lot.
These examples are burdens on genuine illness and health bloggers. And they can hurt.
I admire those illness and health bloggers who are genuinely making the world a better place by responsibly sharing their stories online. And I am disappointed in those who take advantage of the vulnerable. There is no health blogger’s rulebook or union. I’m winging it. We all are. So I’ve made my own pledge to do the right thing by health bloggers, my community and my values.
I am a health blogger. I will:
Be truthful about my illness, and accountable to the charities and causes I support.
Maintain respect and privacy for the professionals who treat me.
Always encourage a healthy diet and lifestyle in conjunction with medical and psychological support.
Link to support groups that may help you.
Never claim a food or life-practice will cure you.
Never receive payment to endorse prescribed and over the counter treatments that I use for my skin (this includes affiliate links).
Write about what has helped my skin, but always provide a recommendation to seek advice from your doctor before trying new things.
Own my writing and my mistakes.
Acknowledge that all patients have different symptoms and levels of severity - and what works for me might not work for them.
Continue to foster a positive, supportive and educated online community.
Seek help if I am experiencing vicarious trauma from others sharing their stories.
I have a chronic illness and I love myself sick. Sarah Wilson believes self-hatred is making us sick.
Sarah Wilson describes herself as a "blogger, author and wellness coach". She is perhaps best known for her editorship at Cosmopolitan Magazine, host of season one of Masterchef Australia and I Quit Sugar evangelism (oh they all seem like a contradiction don't they?!).
Note that I didn't list qualified nutritionist or medical practitioner in there? Because she's not.
She wrote a news story titled 'Is self-hatred making us sick?'
She writes:
"When I’m asked, as I often am, "What caused your disease?" I have to be frank and say – once all angles are ironed out – everything points to … anxiety. Or as I like to put it, a profound, visceral, itchy dis-ease with myself."
This story was an extension of a blog post titled 'could female self-hatred be the real cause of autoimmune disease?'
She's quoted Dr. Habib Sadeghi, who she describes as "an American 'healer to the stars'". Dr Sadeghi believes self-hatred is the real cause of chronic disease in women
"Self-hatred causes autoimmiune disease, which, boiled down, is the body attacking itself"
Furthermore:
"* So how to heal? With self-love. I rarely know what this means and it mostly seems a bit "motherhoody" to me. But I can see how key it is. You can do all the tests, elimination diets and treatments you like, but, boil it all down, there’s always a sneaking feeling that it’s more than the gluten or the toxin or the hereditary predisposition. Right?
Sometimes I sit and really feel what’s behind a flare up. The only feeling there, behind the pain and shitiness, is a cringy, self-flagellating, forward-lunging anxiety. It’s always there, whatever the flare. The same feeling"
I have a chronic illness and I love myself a lot. I look in the mirror and see a beautiful smile, and I'm proud of my accomplishments. The cause of my chronic illness cause is genetic, not due to self hatred.
Sarah, I was born with Ichthyosis due to a gene mutation. Ichthyosis affects my skin and also my eyes, ears, temperature control, metabolism and immune system.
While I am happy, I also know a lot of people with Ichthyosis who aren't happy with themselves and haven't accepted the condition they were born with. This hasn't caused or worsened the condition. And many parents blame themselves for passing the condition on to their child. Another source of blame is the last thing they need.
"The inherited forms of ichthyosis are caused by mutations in genes passed from one or both parents to a child. In some cases, the parents themselves do not have the condition, but carry the genetic mutations."
"Netherton syndrome is caused by mutations in the SPINK5 gene. This gene provides instructions for making a protein called LEKT1. LEKT1 is a type of serine peptidase inhibitor. Serine peptidase inhibitors control the activity of enzymes called serine peptidases, which break down other proteins. LEKT1 is found in the skin and in the thymus, which is a gland located behind the breastbone that plays an important role in the immune system by producing white blood cells called lymphocytes. LEKT1 controls the activity of certain serine peptidases in the outer layer of skin (the epidermis), especially the tough outer surface known as the stratum corneum, which provides a sturdy barrier between the body and its environment. Serine peptidase enzymes are involved in normal skin shedding by helping to break the connections between cells of the stratum corneum. LEKT1 is also involved in normal hair growth, the development of lymphocytes in the thymus, and the control of peptidases that trigger immune system function.
Mutations in the SPINK5 gene result in a LEKT1 protein that is unable to control serine peptidase activity. The lack of LEKT1 function allows the serine peptidases to be abnormally active and break down too many proteins in the stratum corneum. As a result, too much skin shedding takes place, and the stratum corneum is too thin and breaks down easily, resulting in the skin abnormalities that occur in Netherton syndrome. Loss of LEKT1 function also results in abnormal hair growth and immune dysfunction that leads to allergies, asthma, and eczema."
There is currently no cure for Ichthyosis, but I can't tell you the amount of times people have offered me Noni juice, magic pills, prayers, happiness retreats, and advice about elimination diets to cure me.
This year has been the best year of my life. Travel, meaningful day job, an engagement and awards, and I've loved myself sick. I've got so much love around me. But it's also been the sorest. I can't tell you how sore I am, even now. Days missed at the gym. Hard to get up in the morning. Bloody, painful legs. No amount of happiness will make me feel better physically. It's up to my body to heal itself.
I've never told myself I'm ugly or no good or self harmed. And even if I was self loathing it would not change my Ichthyosis.
I take pride in my appearance, further myself in my career and education, surround myself with amazing people and reach for the stars. And guess what? My face is still red.
I believe in the power of positive thinking but I'm a realist. I believe in the power of positivity in addition to a good medical team and plan, and a realistic perspective.
And a chronic illness like mine means there will be times I am down. That I wish this wasn't my lot in life. I don't want to be stared at like a freakshow. I don't want to be in pain. And that level of 'negativity' is perfectly normal for people living with chronic illnesses.
I don't want to be told by someone with NO medical qualifications what's caused my genetic, rare chronic illness. What's love got to do with it?
Ichthyosis wasn't caused by a lack of love. My parents love each other very much - they moved countries to marry.
Ichthyosis was not caused by Jesus or sin. (The burden that muse be on religious believers thinking they've sinned to cause illness must be unbearable.)
Ichthyosis was not caused by diet or environment. (Of course what I eat helps me to manage my skin better. But removing a whole food group will not cure it. The same goes for the environment - shady, low allergy areas are best for my skin.)
Neither can Ichthyosis be cured by love, faith, food or positive thinking. I can change my lifestyle but I will still have Ichthyosis. I will still have red, scaly, painful skin.
My friend Camille has an autoimmune condition called Hypogammaglobulinemia - also called CVID. She was on the lung transplant list for 18 months. I never heard her utter a word of self hatred. It took a transplant to save her life, not a positive attitude. When I read Sarah's attitude towards chronic illness I feel for people like Camille.
Sarah has a dangerous message to be spreading, especially to a large and maybe vulnerable following. She's dismissing those with serious illnesses, shaming them into thinking their attitude is not positive enough to make them well. This evangelical movement that Sarah has started is worrying. It's medically unsubstantiated and belittling to medically diagnosed conditions.
Her writing about self-hatred is victim blaming. It reeks of harden the fuck up. And the chronically ill don't need this attitude. We need compassion and understanding and the permission to manage our conditions our way.
If you're desperate in finding answers and treatment for your chronic illness, please go see a doctor.
(Postscript - while I am a health blogger, providing information, advice and support to the ichthyosis community, I've never made unsubtantinated claims. My story is based on my personal experience and I acknowledge that everyone manages the condition differently. I am not a doctor or counsellor and always encourage blog readers to seek professional, qualified help for their conditions.)
A few people with Ichthyosis and disabilities have asked me how I maintain a full time job and how I talk to my managers about my condition. So here's my employment story.
I have always wanted to work. I think working is very important. Working has helped me become more confident. Working also helps me feel valued. I also enjoy the social interaction. And it allows me to live the life I want because I earn a wage.
I've been sore for the past six weeks or so. I have been in hospital, had a full week off and days off here and there. Every morning when I wake up, my skin is in pain. It exacerbates in the shower and through the day it gets tighter on my legs, and weeps. One afternoon recently I was feeling extremely sore and told my manager that I was sore and I'd leave a little early to rest, and asked if I could take my time starting work the following day. I don't want to speak to soon but I had a half hour sleep in the next morning and didn't rush for work. I felt one thousand times better and less sore than I have done any morning (or day) these past six weeks. Here's to rest and a supportive workplace!
On perceptions
Sometimes I feel I have to prove I am not just a red face. I have to prove that I can work hard, that I am smart and educated. I am very outspoken and don’t let my appearance hold me back. I am also mindful of the perceptions of having an illness that appears the same to my colleagues every day. While my face might be the same level of redness each day, my level of pain differs from one day to the next. I might be smiling but I'm in pain. I might have been well yesterday but it's hard to walk today. I worry about the perception of sick leave – what if I feel fine one night when I see a band but wake up the next morning with awful painful infection (due to no fault of my own)? What will my colleagues that don’t know me so well think? It's hard.
My first job
My first job was a casual role at a large department store. It was a big boost to my confidence. I worked at the store for over three years while studying at university. Work was so different to school. I made many lasting friendships. I often wish I had started working in a casual job sooner.
My first job helped teach me professionalism. It was obviously a very public role and I was faced with constant questions about my illness. I grew more confident in handling these questions. I was always careful to represent the store professionally while also ensuring I was being respected.
Once I was called a “lobster” by a customer while I was in uniform. This upset me. But I was unsure about whether I was allowed to respond. The store manager and I discussed my situation. He gave me permission to tell someone that I did not want to serve them if they were rude. It was reassuring that my colleagues were willing to stand up for me.
My day job
I work as a public servant - I have done for 11 years. I have chosen this employer for many reasons including the leave conditions and diversity policy which is accommodating to my condition. I don't have any physical workplace modifications as such - except I do get a new keyboard and mouse regularly because of the germs - but I do have modifications that involve understanding and flexibility - that goes too ways. When I'm at work I put in 110%. When I'm not able to, my workplace understands.
I have access to flex time at the public service. I use this to attend scheduled hospital appointments so it doesn’t eat into my sick leave. If I wake up sore, text my manager telling them I’ll be late and take my time getting into work, and leave early if necessary – again, taking it off my flex balance. By not pushing myself to do a full day, I am looking after my health, allowing myself to rest and recover, saving me (and the workplace) sick days.
I have also been able to obtain a long term doctors certificate for a recurring illness to use for five days of sick leave a year – while it’s not additional sick leave, it means that I get an extra 5 days where I don’t have to go to the doctor to get a certificate for my recurring illness. Proudly, I only had 12 days of sick leave last year – and about 8 of those related to my skin.
I learnt that not every job is for me, even if it is office based. I knew that I couldn’t be a marine biologist or a doctor because of my skin, but I never thought an administrative office job would be challenging.
I have had roles where my health suffered. For example, I found it difficult to cope with tight service standards. I often had to take leave for hospital appointments. There were also sometimes unplanned leave when I could not work because of my illness. My absences made it difficult for my colleagues because my work would pile up. Sometimes I would be questioned about why I was taking so much leave. Those experiences brought my confidence down. My health also worsened. I had to take time out and get the support I needed.
Once I found a role that suited my interests and skills - and a bonus to have amazing managers - my health improved so much. There's a saying that if you enjoy your work you'll never feel like you're working. And my career has been that way for years now, give or take a few months.
One of the best things I have learned in my career is to be upfront about my disability. I've told my managers and colleagues what it means for me. I have also talked about my limitations and (most importantly) my strengths. I have told them that there are hospital appointments I have to attend. There will also be days where I am not well enough to come to work. They understand that.
I have made a decision to be really open about my condition and needs. I acknowledge that disclosure is optional but in my experience, disclosing my Ichthyosis (there's no choice not to!) has helped. When I get a new manager, I talk to them about my skin, what it means for me and what it means for them as a manager. I've given them medical and anecdotal evidence about my condition and invited any questions. I also let them and the team know when I'm leaving for hospital appointments. Regular hospital appointments (bi-monthly) are generally scheduled first thing in the morning or towards the end of the day so I can go there straight from home or from work.
I only take sick leave when I'm sick - because I can't afford to waste it. For many years now my sick leave used to run out and I'd use annual leave or purchased leave when I'm sick. The supportive workplace and enjoyable and suitable work has meant that I'm able to roll over my sick leave. Yay!
I've also become involved with diversity and disability initiatives in my workplace.
Freelance work
Freelance writing and speaking is work too. And I feel super busy - always. I come home from my day job and work.
I prioritise my life (in relation to work) this way:
1) My health
2) My day job
3) Every other commitment.
If I'm not well enough I say no. If I can't make a deadline outside my day job I say no. I hope editors and blogging partners understand.
I'm also mindful not to be perceived to be doing other work while I'm on sick leave from my day job. My own values dictate that I'm always seen to be doing the right thing when it comes to my day job - after all they pay me so I can do all the other fun stuff. I will do a little social media for myself at home, but generally I don't blog about big issues or write or speak for others when I'm unwell. Lately I've been organised enough to have a heap of posts batch-written and guest posts to go. So the pressure to produce blog content has subsided a little.
I've been careful to balance my day job with my freelance work, advising the media department of any publications I feature in, talking to my manager about my goals inside and outside my day job and also talking through situations where there may be a conflict of interest. I've familiarised myself with social media policies and public comment policies - and am mindful of these in everything I do. However I still have a voice - most recently attending a protest to save ABC Ramp Up - I was I interviewed on the news but made careful decisions about what I answered in relation to the protest and the importance of disability media and also government policies. It can be tricky.
On discrimination
I need to be careful what I write about here - but there has been times when I've felt very uncomfortable with peoples' reactions when they meet me. For quite some time I was 'the face' of my building, in a very internally public role. I never had overt reactions, but living with a facial difference for my whole life has meant I'm good at reading expressions and recoiling body language. I always go to shake peoples' hands and look them in the eye and haven't been afraid of leading a discussion or speaking in front of a workplace audience. One woman told me she couldn’t handle looking like me, but I laughed that one off and turned the example around and used it in a skit in my community TV work.
The times I have felt uncomfortable have been met with wonderful support from managers and peers after I've spoken up. As I said earlier, I'm fortunate to work somewhere with a diversity policy.
Balancing it all
I make lists, schedule hospital appointments in my calendar and try to prepare food for the week on a Sunday. I am a big believer in eating well to be kind to my skin, boost immune system and maintain energy so I take home made lunches to work - so I know what I'm eating. The slow cooker gets a lot of use in winter!
Resources
Changing Faces' What Success Looks Like initiative has got some great resources about talking to your employer about your facial difference - which can apply for all types of disabilities I think. It also has some tips for employers when interviewing and working with people with facial differences.
Look for employers who are supportive of diversity.
Choose a job that suits your health. Consider the pressures, the shifts, the type of work. Go part time if needed.
Be upfront about your disability. Disclosure is optional but it can also lead to better support and understanding from your employer.
Footnote
I'd like to acknowledge just how hard it can for people with disabilities and chronic illnesses to get into the workforce. The physical and attitudinal barriers are astoundingly disappointing and there's a distinct lack of opportunity. There is still bigotry and fear around disability. I really hope the barriers to employment are lifted in my lifetime.
Tell me: have you experienced barriers to employment? How do you talk to your managers and colleagues about your disability or illness? Are you confident to?
After I came out of hospital earlier this month, Adam would sit on our bed and tuck me in, making sure I was warm. He brought me my antibiotics on time, and breakfast in bed too. He carefully pushed the hair out of my eyes, cupped my face in his hands and kissed me. He would let me sleep in so that my shower was warm and bring me breakfast in bed. The love in his eyes was so sparkly. He's with me in sickness and in health.
Getting used to my skin has been a challenge for him - and for me. I wrote about the adjustment here. I've never been more aware of my skin than when someone else tells me how it looks and feels from their perspective. It's been snowflakes on undress and the bearded lady in the morning. It's been confused temperatures and surprises at my voracious appetite. He's held my hand through blood tests and cannulas and seen my legs bloody and raw during infection. Still, he's stuck by me.
The reality of Ichthyosis is that it's complex and needs explaining to new people. Just googling it is Russian roulette - there could be an image of a deceased foetus or an alarming statistic. And so this is why I tell my own story here, on my own terms - so people understand it better and don't take sensationalism as gospel. I never want to create fear around Ichthyosis. That fear creates assumptions and prejudice.
Friends with disabilities tell me the times when their partners have been praised for being brave.
Courageous for supposedly giving up an ideal life to be with them.
Saints for looking after them.
Confident for holding their lover's hand in the street.
It's a shame they're settling.
Fortunately none of those things have been said to me, yet. But I wonder if people are thinking that?
The last thing I want is to be a burden on my love. That's one of the biggest insults a person with a disability can receive. A burden. A liability. Dependent. A leaner. Like Graeme Innes (former Disability Discrimination Commisioner) writes, the concept of leaners and lifters is one that I don't accept.
While there's a certain amount of time he will spend caring for me when I'm out of action, the majority of time I'm very active - managing my own self care, working at my day job and writing and social media to pay the bills and for luxuries like clothes and travel, and enjoying life. I've built independence and resilience and budget for my medication and have chosen an employer with adequate conditions to cover my needs. I have managed. And we will manage together.
Of course there will be times when the roles will be reversed and I will be visiting him in hospital and cooking him chicken soup when he's congested. I'm with him in sickness and in health too.
Maybe I wasn't the girl he imagined he'd spend his life with. Perhaps I'm a little more high maintenance than he expected. But every day he tells me I'm beautiful and he loves me. And I love him. Together we will make it through.
As I wrote earlier this year, it will be hard but it will be worth it.
-
Adam writes cute poems for me, and this is one of his latest. I prettied it up through an app to treasure it forever. I am so lucky to have found this beautiful man to love!
Sometimes I tell the world something to keep myself accountable, or to help my goals happen. I've done this in two forms this past week - things are happening and I feel great! It's also helping my steps to positive life change.
I wrote last week that I had been to the gym for the first time in years. (And that post was republished on Mamamia - thanks Jam!). I wasn't sure how long I'd stick it out, or whether I even should write this post as it's only been a week. I felt so unsure of whether I'd stick excercise out that I bought that cheapest sports bra, telling the sales assistant that I only wanted to spend $20 because I was unsure of my level of commitment to exercise. But I've done it - I've exceeded my own expectations - and others' too. My Mum told me she thinks it's funny, Dad said I've "been exercising like mad" and my previous manager who's known me for eight years had to sit down when I told her. My friends are giving me a lot of encouragement to keep going. Someone suggested I might like to run a half marathon in the future. I laughed and laughed, telling her I'm just focused on surviving the next hundred metres.
I knew I had to start exercising. The doctor told me I should, and I saw myself in a photo recently and wanted to look leaner. So I did. I started off at the gym doing exercise that I thought I could manage. A bit of brisk walking on an incline, gentle cycling, 10 sit ups. I went to a Body Balance class (which I did a few years back, back when I was first blogging). Admittedly I couldn't stop thinking of food during that class.
Somewhere between feeling hesitant about starting because of the pain exercise might cause me, and the smile I broke into when I found myself running on the treadmill, I realised I could do a lot more. My body's a lot stronger than I think it is. And I also realised, I can fit it into my day - 30 to 45 minutes is a good investment in myself, and not hard to make time for.
Since last Thursday night I've been to the gym six times. As this blog post clicks over to published, I'm at the gym. I've done lots of walking and cycling - I've moved 16 kilometres this past week. I've done a total of 250 sit-ups and a few dozen arm weights. I've stretched my body with some yoga and Pilates poses (and one of my proudest moments was being able to clip my hair up into a neat twist while sitting in a pose!). I've pushed myself from walking to running - first walking more than I could run, then equal parts, and then running more than I walked. First I ran 500 metres, then 600, and then 1000 metres. One kilometre! Without stopping or getting out of breath. It felt so good. I've heard about endorphins and now I've felt them.
I don't worry how I look - or about what anyone else in the gym is doing (except that lady who doesn't wipe ANY of the equipment she's used - yuck!), I just focus my eyes straight ahead, looking at the metres clicking over. I don't count calories burnt. I pace myself with songs (P!nk, Eskimo Joe and Darren Hayes' side project We Are Smug have been on high rotation on my iPod), and hundred metre intervals. Just another song. Just another 100 metres. I find myself smiling a lot when I hit these little milestones. I can do more than I thought.
I have been going to the gym in the morning - I have a system worked out that is best for my skin. Get up at 6.00 am, wash face and dry bits of skin, comb hair and tie it back (it's surprisingly lengthy now!) and get dressed for gym. While many people with Ichthyosis have trouble staying cool when exercising (because we don't sweat properly), I have trouble staying warm (and flexible). My skin gets so dry when exercising. My skin is like powder inside my clothes. So I wear long leggings (7/8 ones are full length on me too!), a tank top over a tight long sleeved tee, and a light warm jacket for the majority of my exercise time. When I get home, I have a shower (the best shower I've ever felt), put my cream on, and go back to a warm bed (with heater or electric blanket on) for half an hour. I eat a high protein breakfast - this week has been a slice of frittata packed with veggies, plus a small serve of wild rice, pumpkin and kale. I still fit my social media time in before my day job - I do this in bed - and I am well rested, moisturised and warm.
I feel SO energised when I set off for my day job, and throughout the day too. The endorphins make me buzz. I feel a lot happier than I have been. And I'm sleeping well too. The other night I slept from 8.00 pm until 6.00 am, and then had another sleep for an hour!
I feel that my mind does not relax most of the time. I'm always on the go - reading my phone and a newspaper at the same time, thinking of three things at once, writing several things on the go, eating and watching TV or reading. But for that half an hour at the gym, on the treadmill, I am focused on my whole body. Every breath, every step. I just focus on my next step, the way my body is moving and the way I am breathing. It's wonderful.
Even though it's been a short time, I feel like my posture has improved, my tummy is less jubbly, I feel strong and disciplined. I'm eating more (good food, and not being tempted by naughty snacks), and my skin is feeling (and looking) good. That picture above - that's after one hour and 20 minutes of exercise. Radiant.
I'm stronger than I thought, I can work harder that I thought, and this is less painful than I feared (though on Tuesday my body was so, so sore all over, except for my skin!). It's a new kind of pain, a beneficial one - and for once, I know the reason for it. I am titanium. We all are.
Maybe I'll keep writing about exercise here, if only to keep me accountable. I'm so glad I've started, again. I can't wait to keep going.
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I've done a heap of guest posts recently:
A big thanks to Rachael from mogantosh who invited me for an interview on her blog this week - she called me an interesting person! I particularly liked writing the five random things bit.
While not a sponsored post, but a commissioned one, I wrote about body image on Mamamia last month.
And finally, I wrote a post on the new Australian health resource site Health Engine.
Also also, thanks to Maxabella for listing my post as one of her favourite reads of the week in her Maxabella Loves weekend linky (one of MY favourite reads of the week!).
June is the Heart Foundation's Go Red for Women month. Heart disease is No.1 killer of Australian women. The Go Red for Women campaign is designed to raise awareness about women and heart disease, encourage women to understand the risks and make healthier choices to reduce their risk. It’s a great opportunity to find out how you can improve your heart health and help other women do the same.
As someone with a chronic illness, it is easier to focus on maintaining my skin condition at its optimum than monitoring my general health. The pain of my skin is so obvious - and the stress my heart and other internal organs may be under is not so obvious. But, like I wrote in April after going to a Heart Foundation cooking class, whole of body health is so important - especially heart health. I don’t want to be slowed down with poor health. I want to be present for my friends and family. I want to continue to enjoy the great life that I’ve created for myself. And so following on from that post – writing things down for the world keeps you accountable, right?! – I made an appointment with my GP, to get an overdue examination.
We talked a little about heart health. The Heart Foundation outlines the things you should discuss with your GP in this document. I didn't know that 90% of Australian women have at least one risk factor for heart disease, but on learning this fact, I did know that it'd be likely that I'd have at least one risk factor. And my appointment with my GP confirmed that I did.
The GP listened to my heart (just like Roxette sang) and took my blood pressure (normal – though it’s usually very low when I’m in hospital). I was pleased to know my blood pressure is optimal for low heart disease risk.
I was weighed and while I am not overweight, my GP encouraged me to lose a few kilos and to tone up a bit, so I can get back to the lower end of the BMI index. I’ve been mindful of my food intake (especially when at home) and plan to resume dance class next term. We talked about losing five kilos slowly and gently, which I think is doable. Weirdly I have been dreaming of getting my body moving – I dreamed of running on the treadmill the other night. It’s a sign. I still have a gym membership...
My GP asked me more questions about my lifestyle. I told him I am not a smoker (never smoked), drink moderately and eat a balanced diet full of fresh whole foods - which are all positives for good heart health. I have stocked up on porridge supplies for breakfast at my desk - five grain oats, nuts, LSA, chia, dates, plain yoghurt and frozen berries plus whatever fresh fruit I have on hand. I love starting the day off so well.
I then braved it and had a blood test which covered iron, cholesterol, diabetes, lipids, vitamin D and my liver. I am pretty hardy when it comes to medical procedures but I don’t do blood tests very well. Ichthyosis means finding a vein can be very difficult – and I panic and it hurts even when the nurse is feeling for a vein, and then I cry. The nurse at the GP clinic couldn’t do the test while I was there because she couldn't find a vein, so I went to the pathology clinic at the hospital before my dermatology appointment. Fortunately the pathology nurse was a pro and she found a vein straight away, used a butterfly needle and it was all over in a minute. While I felt very faint, I didn’t cry. Or “cryperventilate” as a friend termed. Hah!
My blood test results will be in on Saturday - and depending on the results, I will make some more small changes to my lifestyle. (And Saturday is also when I go for that pap smear I've been putting off never had.)
It feels good to be to be taking responsibility for my whole of body health. It's not often I voluntarily have a blood test and put myself at risk of cryperventilating. But I know that results of my blood test along with the discussion with my GP, doing more physical activity and cutting down on the cheese and pork belly (to slim down my belly), will help me create a better lifestyle for a healthier heart so I can continue loving life for a long time.
To find out more about Women and Heart Disease, you can read the facts in this brochure from the Heart Foundation.
You can also call the Health Information Service on 1300 362 787 during business hours (local charges apply). Ask them any questions about the concerns you have. And if you think you are experiencing the symptoms of a heart attack, call an ambulance immediately. A false alarm is the best outcome.
Disclaimer: I was paid to write this post and used medical information about heart health supplied and endorsed by doctors at the Heart Foundation and from my GP. My choice of GP was my own and the opinions expressed in this post are my own.
Because sometimes fun word games are played on Twitter, and I knew the picture of hospital food would eventually come in handy. The mashed potato was always the best bit.
I spend so much time focusing on the health of my skin that I don't seem to focus on my whole of body health. I spend a lot of time seeing dermatologists, eye and ear specialists and the infectious disease unit to ensure my skin condition is under control.
And yet I seem to neglect other parts of my health.
I'm not much good at going to the dentist - I think 2007 may be the last time that I went. It's honestly too expensive. Julia, we need more affordable dental healthcare in Australia. I eat a healthy balanced diet (though do indulge) and am mindful of eating whole foods, but don't exercise regularly. I've never had a pap smear. I don't check my breasts regularly. I remember to take an antihisthamine every day but forget my vitamin D supplement. And I haven't ever had my cholesterol or blood sugar checked. I tend not to take painkillers until I feel on death's door, and I am not sure how to manage my asthma properly. My skin is the organ I am most aware of and gets the most visibly, recognisably and painfully affected. Because of my rare condition, sometimes it's easier to just see a dermatologist than go to a GP who doesn't always understand my condition or focuses on it rather than the ailment I present for. Because sometimes it's too hard.
I was at a Heart Foundation bloggers event last week - a cooking class coordinated by Brand Meets Blog. Lots of lovely bloggers connected (Kim, Amanda, Toushka-Lee, Emma, Kerryn, Heather), we drank some wine, and we cooked some yummy healthy food with the help of a chef. The food was great!
We snacked on Lima bean dip and crudités...
And Sandra and I paired up to make a Moroccan mixed grain salad. Sandra has mad chopping skillz. Meanwhile I toasted some almonds.
And an amazing Vietnamese chicken coleslaw. The best. Kerryn has uploaded the recipe here.
Mackerel. I wish my skin had this beautiful luminescence. It's so important for me to eat oily fish, and mackerel is a great source of omega 3 and good fats for my skin.
Our plated up meal.
And a beautiful poached pear in red wine with orange honey yoghurt.
While cooking with a wide range of fresh healthy produce to ensure a healthy diet wasn't anything new to me, it was really great to talk heart health with Dr Lyn Roberts AM, CEO of the Heart Foundation. She was so warm and knowledgeable. It was interesting to hear that women don't consider the risk of heart disease as much as men, and that if you think it's an emergency, call an ambulance - a false alarm is the best outcome. We learnt about the signs of a heart attack and it was reinforced that to make a healthy lifestyle change, it is best to start with small steps and build on these incrementally. This may mean small blocks of exercise leading to larger blocks, or reducing your intake of a bad food each week.
One of the things I raised was that because of my Ichthyosis, I tend to focus on this chronic illness rather than the health of my whole body. Dr Lyn Roberts emphasised that it's so important for people with chronic illnesses to make sure all aspects of your health is in check. It made me realise the importance of finding a great GP and ensuring they understand your chronic illness as well as them seeing that you undergo the regular checkups.
The Heart Foundation bloggers' class taught me about heart health, but it also made me think about how important it is to look after my whole body - not just my skin. And I am going to make those incremental changes very soon, starting with a check up at my GP, stat! And then I plan to do a bit of exercise each day. It can't be that hard. It will be worth it. I want to keep living this great life to the fullest!
Tell me, are you good at maintaining your whole of body health, especially if you have a chronic illness? Have you had a lifestyle change for your health? Do pap smears hurt?
Disclaimer: I was invited to the Heart Foundation bloggers' class by Brand Meets Blog. I was not paid to write this post.
