He loves all of me, and all that I leave behind.

Since being with Adam, I've come to see what it means when someone truly embraces my skin condition and my appearance. He doesn't look past or love me in spite of the way I look. He doesn't accept or tolerate - those terms are condescending and suggest someone has to accommodate a disability. He loves me. He loves all of me, and all that I leave behind.

Adam calls me his flaky strudel. He once told me that he finds pieces of my skin in his pockets, allowing him to carry me with him. He looks at me adoringly, with whatever face I've got on. In the morning, his beautiful face beams at my just woken up face - taut with yesterday's skin. I'm feeling my least beautiful and he looks at me like I'm a supermodel. When my new face is on and I'm feeling good about myself, he'll say, "you've got something on your face. It's beautiful." And my heart melts. Every time.

I imagine it would be such a lot to get used to - dating then living with someone who sheds so much skin, whose skin is a combination of dry and oily all at once and who’s always feeling some element of pain. I admit to being high maintenance - merely because of my skin, which is out of my control. This high maintenance usually involves me being too hot or cold or itchy or sore. But Adam has stepped up - feeling my body for a temperature (or just a chance to cop a feel!), pulling skin from my hair or ears, and never complaining how much of my skin and cream ends up on him. He’s here for me in sickness and in health. Ichthyosis causes incredible self consciousness in the patient, and it seems intrusive for those around us. I say that with absolutely no apology, though. (More about that in a future piece from me.)

I was reading a blog post by a blogger called Mom of 4 is Tired on the weekend. I immediately sent this passage to Adam, saying that the blogger could have written this about our relationship.

"Who is telling you that your body isn’t the ideal?

Only people who don’t really matter. Only people you don’t know. Only that same voice in your ear that is telling you you ‘re not a good enough mom or worthy of a raise or shouldn’t go back to school or wear that dress. Are they invested in you? Are they worth believing?

Who is telling me, telling you that your body is exactly right?

Only the man who lays down to sleep with you every night. Only the one person who sees you naked every day and would throw down whatever he is doing to meet you ANYWHERE, ANYTIME for a quickie."

This passage resonated with me so much. A year and a half ago, I'd have resigned myself to a life of singledom, that I'd never experience this true love. Now, I am so lucky. Adam wants to touch me when I feel least desirable. He looks at me in wonder - no matter how I look. He holds my hand proudly, wherever we are. He's never made me feel like I have to apologise for being me. What a privilege that is - though it should be the norm.

I don't think happiness and the pinnacle of disability is finding a partner. And I say that even when I have - because I lived independently for so long. I developed the strength to love myself on my own, and I never thought I'd need a man to affirm my beauty. But the way Adam sees me is so powerful - for me, and for everyone who doesn't see what he sees.

We set our wedding date on the weekend - 20 March 2016 in Melbourne. Such a happy moment for us, and such a happy time we have to plan. Gosh I love him.

 

 

'Someone will come along one day'

It's been hard to title this blog. I want catchy, but I don't want pity (self pity, or your pity). I want honesty. I want it to reflect what this blog entry is about. Humour won't really do. Or will it?

'The struggles of finding love when you have a chronic illness'. This sounded too university assignment-like.

'You didn't tell me you were THAT red'. Yes, that's been said to me before.

'Someone will come along one day'. I think this suits. Affirming and something that's been said to me numerously.

I was reading an interesting blog that I identified with over the weekend.

Todd over at Thoughts of a Frustrated Visionary writes about the challenge of the difficulties of being disabled and finding romance. While my own experiences are different to his, I completely agreed and empathised with this.

'Well then imagine what it is like [the difficulties ] for you or someone you know to find a partner, then add a physical disability into the mix'.

Lots of people say to me 'you'll find a boyfriend, you've just got to give it time'. Or 'someone will come along and love you for the person you really are'. Sigh.

This all may be true, and very kind, but in reality, it's difficult for some people (boys) I meet to get over my appearance.

I'm not saying that about everyone I meet because the majority of people I meet do look past my appearance. I've got wonderful friends and colleagues who treat me like a 'normal' person, which I am forever grateful for.

But finding a partner can be hard. And it can make me sad.

This isn't a woe is me blog entry. I'm not feeling sorry for myself. I simply wanted to write about this topic because Todd reminded me of how it feels to have the challenge of having a disability (or chronic illness, in my case) and finding love.

It's not too bad being single. I don't have to share or compromise. But sometimes I just want to share my life with someone. To go to the movies. To cook dinner for. To feel loved just knowing they're in my life.

And it's not like I do much about fixing my singledom. I don't look at the odd online dating site kiss or message I receive these days, because honestly, they are probably '36, average and looking for a bit of sexy'. I am not out at nightclubs on a Saturday night - I am at home drinking moscato in my pyjamas, watching Love Actually and reading magazines, eating cheese. And I don't belong to Rotary or a chess club. Nope, I'm not putting myself out there.

I have had boyfriends in the past. Four in fact. These have all been fine about my skin condition. Even the yucky everyday stuff. One boy was so fine he marvelled at an ant carrying a piece of my skin across the hardwood floor and was fascinated by this so much that he watched it for five minutes. He also told me that one day my skin cells won't have anything to renew anymore and that I'll spontaneously combust. Sometimes he was so fine about it that it became more about my skin than me. But he meant well :)

I've even pashed the odd (in nature!!) guy at a pub. A great boost to the self esteem (once I became mature enough to know that it wouldn't eventuate to more than a pash).

I sometimes think that certain people don't expect someone like myself to have a boyfriend. Once, I changed my Facebook information from single to a blank relationship status, and it then said 'Carly is no longer single'. Even when I was still single. Lots of friends 'liked' this, but one person from school commented 'It's about time'. It may have been good natured, but I wondered whether she thought I've been waiting for love all my life.

Most of my loves have been unrequited. The crush can be fun, for a while. But moves are made (usually on my part – did you know I've given three valentines cards and presents?! - and sometimes on theirs) and then I am left feeling a little bit devastated that I love them more than they like me. The positive letdowns have been quite flattering, and a bit too gentle, really:

'You were brave to tell me how you feel'.
'That made my day'.
'You're too fucking special'.

Sigh.

With these ones, I know they looked past my appearance because they were good people.

But then I wonder how long it will take for me to admit my feelings for someone and they reply 'you're a great girl, yes, we should go out sometime, I'd love to get to know you better'.

I'm not a jealous person. Sometimes I wish my life was a bit more like others, where I didn't have to worry about my skin getting in the way of doing things like going out or wearing certain clothes, or even going to work, as I have mentioned before. But there are times where I have seen people with disabilities in relationships and wonder why I can't be like them. In a relationship AND with a chronic illness? Loved my a partner unconditionally. I feel bad for thinking this. Everyone deserves to be in a loving relationship.

I think I'll know when I meet the man of my dreams because he would have taken the time to get to know me under my exterior.

Movie and shopping - the I Love Me date

As mentioned earlier, I spent today at the cinema and then shopping it upat the local massive mall.

I LOVED the film Valentine's Day. It didn't take much brain power, and it was really sappy in parts, but it was a great escape and it made me laugh and feel warm and fuzzy.

I did notice it was a lot like Love Actually, even though Valentine's Day was directed by Barry Marshall and Love Actually was directed by Richard Curtis. The part that reminded me the most of Love Actually was the little boy with the crush on his teacher. I don't love it as much as Love Actually, I don't think I could give my heart fully to another movie, but I will be watching again, if not buying it on DVD.

Another thing I thought about the film was most of the female actresses had high cheekbones and thin lips or narrow faces. Julia Roberts. Jessica Biel. Anne Hathaway. Jennifer Garner.

I recommend seeing the film at the cinema. It is nice. Boys may be bored, but there are enough female characters to distract them from the plot.

I think my favourite part was the Julia Roberts blooper at the end of the film in the credits - she's been down Rodeo Drive before.

After the film, I shopped. I have done some serious walking, enough to believe it's fine not to go to pilates tonight.

I believe shopping is my true love.

If shopping was a man, I would marry him. I love shopping.

I love finding bargains. I enjoy buying a few cheapish things on a shopping trip, but then I see something in Country Road or Cue and wish I had not spent my money on three items from ValleyGirl. I try not to spend too much.

Today I went shopping with the gift vouchers from my birthday and Christmas.

I really wanted to buy some CDs and DVDs from JB HiFi as I had a voucher to burn there. But there was simply TOO MUCH CHOICE! And being the bargain hunter I am, I didn't want to spend $30 on the Julie and Julia DVD when in a month or so it will be half that price. (Why are the prices of CDs and DVDs constantly fluctuating?) I picked up Bertie Blackman's Secrets and Lies, The Frames and the Swell Season, and Little Miss Sunshine. And I really wanted to buy Taylor Swift's CD but I was scared I'd regret it.

I was shocked to see Natalie Imbriglia's classic 1997 album (IMO) Left of the Middle for $4.99. Shocked! It is worth SO MUCH MORE THAN $4.99.

I walked around the store with the CDs and DVDs for a while. And I walked out with NOTHING. Too much choice means I can't make up my mind and so I leave empty handed, only to suffer non-buyer's remorse when I arrive home.

I did have luck with buying clothing though. My lovely managers gave me a massive mall gift voucher for my birthday and it could be used at most of the stores. I spent it in Temt and another cheapie shop. I looked in my FAVOURITE STORE OF ALL TIME, Cue, but everything on sale is really 80s looking and everything that I adore is well out of my price range. So I satisificed (a word I learned a few minutes ago in the Sunday Life magazine supplement with the Sunday Age = satisfied X sufficed) with buying from cheapie shops.

This is what I bought with the voucher plus only a little of my own money.

A pleather jacket from Temt. I wanted a jacket I can wear over a dress as well as with jeans. I like this one.

A sundress from I'm not sure where. I've been eyeing it off for a while now.

I adore the print.

A silver and cream top from Temt. I love silver.


I like how you can buy things for $10 that don't look $10. I enjoy the hunt for expensive looking cheap things.

Last night a friend came over and I cooked us a massive lasagne, full of vegies. It was delicious and there is lots left over for tonight and tomorrow's lunch.

I had a nice weekend. Hope you did, too.