Saying Yes

"Sit down drink some wine. You are going to be fine". A little out take from date night a couple of days ago. I couldn't drink wine for a lot of years when I first became ill. The last year of two I started having a glass again and it's been okay. I figure if I'm going to be ill anyway why not at least have a bit of a fun reason for feeling so crap. Sometimes you have to balance up life and decide what's important. What brings you joy. And what things are worth the price of payback. And there is always payback. But there's something satisfying when payback is something you enter into willingly rather than it being foistered on you. It's a bit of a "Fuck you!" to the universe, my body and life in general. And it feels damn fine. I do love this old @asos_au dress for its pop of colour. #dysautonomia #upanddressed #dysautonomia#chronicillness#fashion #frockingup #fashionblogger #ootd #wiwt #everydaystyle #40plusstyle #disabledfashion #disabledstyle #ruraldisability #ruralstyle #ruralfashion #Australia #gippsland #greenhair #Spring #chronicstyle #chronicfashion #365dayswithdisability

A photo posted by Michelle Roger (@michelle_roger) on Nov 26, 2016 at 8:57pm PST

It's been a huge few months. I look back and I realise I've squished a lot in. I've pushed myself. Gone with my life motto of "Fuck it!" and said yes to things and put myself out there. It's been exhausting and exciting. I want to say it means I've been riding a good patch. But I haven't. Not even remotely. But I've done things. And that is rather glorious.

If I wait for the good patch  I'd never do a thing. I'd still be lying here in bed like I am today. Waiting to get to that point where I feel well enough, or at least on that even keel for a bit, where I feel up to doing something, anything.

Instead here I am. Typing on my dog drool stained laptop, lying in my darkened bedroom, swallowing down vomit, and writing a long overdue blog post. I want to say I've worked out pacing but the last four days of pushing way past my safe physical limits in Melbourne put paid to that that lie. In reality I hate pacing. Hate it with a passion.

I try. I really do. I tell myself I'm going to do it. I write blog posts about it. And then I fall back into old habits. Why after 10 years of illness and increasing disability, and my psychologist training, do I still fail to follow what I know are the recommended ways to manage energy in a life of chronic illness?

Time and again I fall back to spontaneous leaps of frantic action, followed by spectacular falls. But that can occur because I decided to sit on a couch or pot a plant, so I might as well push it, get dressed up and sit in a bar on a Friday night and have a glass of wine with my husband.

Payback is an unavoidable consequence of living.

No matter if I pace, or embrace my inner Mayfly, payback is there to greet me. And I'd rather embrace "Fuck it!" and go out in a blaze of glory aka fall flat on my face as I lose my tenuous grip on bodily control and am once more reduced to a messy, weakened pile of symptomatic sludge.

Because if I wait it'll never happen.

'No', is easy is some ways. Just like excuses.  And I have an extensive list of very valid ones. 'No' can be a really healthy option. When I first became ill my inability to say no was a burden. I put myself last and kept trying to be the woman I was before my body reached the point of no return. I became sicker as a result. Everything I did was half-arsed (actually one eighth-arsed might be more realistic). And I beat myself up for my failures, while simultaneously trying to meet yet another now unattainable role. Because I was conditioned to always say 'yes'. Because I was the go to. The confidant. The one who could always be counted on in a crisis or to pick up the slack. I was the solver of problems and completer of tasks. 'No' wasn't in my repertoire. But now? That useful purpose is lost and mired in unhelpful behaviours.

No is best friends with my anxiety. No is my easy out. When my self doubt rises to choke me or when I lose sight of myself, no reigns supreme. At times the sheer overwhelming nature of illness means 'no' continues to be a survival mechanism, a route to self care. But more often than not, it is also the path that stops me from being part of life. It allows me to crawl up in a space that has the dual process of safety and respite, whilst holding me tight in a really unhealthy frenemy trap.

I walk a fine line with no, with pacing, with "Fuck it!" I make many mistakes along the way. But I am finding that when I embrace the "Fuck it!" side of the ledger I am happier.

Every scrap of payback becomes bearable because it is an issue of my own making. 

And every time I try to force myself down the sensible road of pacing I am more uneasy with myself and my world. Sure there are times where it makes sense. I'll give my old professional self and all the professional and personal advisers a nod and say, yes, pacing helps. It is part of my recovery process when I hit the really bad patches. The patches where a flare is measured in months rather than days. When I think I'm managing things and my body sees that as a "challenge accepted" moment. Those are the times that pacing help. But outside of that?

For me it is not a salve to pain and malaise. It binds me tight and sits uneasily on my shoulders alongside all the other burdens of illness. So I continue to tread, shuffle, stumble, and crawl my way through life with spontaneous short-lived moments of glory.

I drink the glass of wine. I say yes to a talk. I stay up until midnight and roll around the streets of Melbourne. Or eat all the things I shouldn't at a Korean BBQ because it tastes so so nice.

And damn it feels good.

Michelle

Three things I am glad I said yes to are linked below.

Firstly, I agreed to be part of the Fully Sick Podcast with Jenny O'Keefe. I'd listened to earlier interviews Jenny had done and loved, a) that it was all Australian stories, and b) that it was far more conversational than a regular Q and A. Jenny is such a lovely person and so easy to talk to. I probably said too much and I know I wish I'd rephrased or expanded in certain parts. But hey if I didn't beat myself up and over analyse my actions and words after everything I do it wouldn't be me. Plus, I blame the fatigue and brainfog.

Secondly, I agreed to be part of the Digital Writers Festival 2016. I was part of a panel with Anna Barnes and Katerina Bryant discussing Chronic Illnesses Online. I will say that pushed me. I was exhausted, had some family dramas going on and that disconnect of talking via the net, vs in person is still really hard for me. Not talking on the phone hard, but still a struggle and quite exhausting. But both Anna and Katerina were lovely and I'm glad I had the opportunity to share the time with them.

Thirdly, I agreed to be part of the Her Words interview series. And not only agreed, but put myself forward, which is so far from my normal behaviour I still don't quite believe it happened. It was an exhausting and long process, plus I'd spent the night before and that morning, wrapped around the toilet bowl in our hotel room. But the women involved were amazing and encouraging. It was a safe space and a space where their dedication to diversity and supporting women's voices was clearly evident. I ended up feeling like death not even slightly warmed up by the end, but also energised and excited. Nothing like being in a room of people who all just get it. I spoke about Self Love especially rediscovering it after becoming chronically ill.

My first reaction for each of them was to say no. But I said yes. I pushed through, crashed after, and was glad that I ignored that first reaction.

A path to nowhere.

[Image: A concrete path stops sharply ending in green grass and worn dirt. A woman's lilac compression stockings knees and edge of black and white skirt are seen alongside the joystick controls of her electric wheelchair.]



Once upon a time there was a disabled woman who lived in a medium-sized country town. After years of dependence and isolation she was finally bequeathed a magical wheelchair. This wheelchair had the power to bring back her independence and allow her to access the world around her in her own time and without a man servant/husband/son to push her. She would no longer be bound to the whims of time off, or after hours, or being propped where her man servants decided to prop her instead of where she wanted to be.

The disabled woman was excited to receive her chair. She promptly hopped in and took her first ride to freedom. She rode around her housing estate and promptly stopped as the foot path ended in a pile of dirt and stones and a busy country road. Undeterred she tried for another path only to find that too ended in grass and little more than a foot worn dirt track two hands span across. Undeterred she once more took off only to find all other exits leading to the main road between her town and the next. Dirt and gravel or thick potholed grass instead of foot path. Trucks carry livestock and farming goods thundered towards her at speed. The woman could not leave her housing estate. She was once more at the whim of a single car that could carry her chair or a public carriage service that could be employed to lug her for a substantial price where she wished to go. If it was available. And she wasn't in a hurry. Or knew the day before what she needed to do and had booked in advance. The disabled woman was frustrated and sad, and full of expletives and rising anger.



Earlier this year a path was proposed that would lead from the housing estate I live in to the rest of the town. I was excited. Such a path would mean that I could finally leave my house unaccompanied and go for a coffee, to the library, local gallery or take a turn in the park. I filled out the surveys and attended the community consultation sessions. My husband spent time on the phone and filled in the same surveys. I went to the council meeting and had my say, as did my husband. Whilst I was not happy with the eventual route the path would take due to it's isolation, I resigned myself to the fact that this path would still at least allow me to access town and I could always invest in a tasar or add a battering ram to my chair. It was supposed to start being built by the end of 2016. But week after week went by and none of the usual signs of an upcoming infrastructure build eventuated. So I contacted my council. I was informed that not only would construction not be starting by the end of this year but that tenders would only be sent out early 2017 for the first half of the path only. First half. Not even the whole path. Not to build. But for the tender process. Which will take, well who knows. The second section. Well at present it is supposed to be completed at some point within the 2017/18 financial period. But there'll be a first half. At some point. I'll get to roll along to another edge. Another slab of concrete ending in grass, gravel and frustrated access.

At the council meeting I tried to impress on the councillors that this path was not just about an alternate way to walk kids to school or a pretty walk to run with your dog, that for people like myself it is about a lifeline to the rest of the town. That this path represents the removal of a financial impost (the use of an accessible taxi service to carry me and my wheelchair) that other members of the community need not pay thanks to the choices that come from being able-bodied or being able to drive. That at present to simply go into town independently to have a coffee I am already slugged with $30 long before I consider a long black at my local cafe, or head to the library to check out a book. That a need for the hospital or medical centre would also attract the same fee. That this path represented an independence that has been lacking in my life since moving to this town nearly three years ago. That as much as I want to participate in my community I am bound by costs with no alternative offered up. That dependence is foistered upon me by the lack of a path. And that I am not alone. There are disabled people, frail people, people who at present are not disabled but could become so at any point in time. And that all of these people required a path for the most basic of needs, access.

Image: an empty council chamber. Blue-grey carpet and a circular wooden table set up with microphones, coloured water bottles and name tags sit in front of a lectern for community members to speak. A lectern as I found out not set up for members of the community who may be in a wheelchair and unable to stand.]



I am resigned to my concerns about safety being wiped away by “there'll be lights” (how that helps in the day I'm not sure) or that there was a reliance on the presence of other users (which will primarily be early morning or after work, not at all during the day). That the path is now to run through an isolated park situated next to open farm land and behind an industrial area and stock yards, because this is a “prettier location” a supposedly safer location. I am not resigned to the fact that this path is not seen as a form of accessibility rather than a nice place to walk the dog or kids to school.

I received this email on the same week as the council was celebrating Social Inclusion Week 2016 with events on all week. None of which I could attend without paying the roughly $30 for a round trip to town. And I sit here with International Day of People with Disability coming up on the 3rd of Dec trying not to get angry about access, (or that after contacting my local council again I am told that there are no events planned for IDPWD on the 3rd. )

To add insult to injury this story about the giant sink hole in the Japanese town of Fukuoka. A giant sink hole involving significant engineering filled in a week. A week. That such a large and important project could be rectified in such a short turn around and my local council can't build a path for two plus years.



Do I hassle my council again? A tiring process that involves large walls of red tape to beat my head against. Should I attend another meeting to be say my piece, when I know I will be ignored or patronised (eg last time I was there a councillor suggested that I and a member of council who was also a wheelchair user could race together at the opening of the path). Should I see them go wow I hadn't considered that, but I'll ignore that factor anyway. Should I have to? Should I or any other disabled person living in this large and expanding section of town have to fork out even more money to do the most basic of activities such as going to the doctor, to buy some milk, or have a cup of coffee? All activities which support local businesses.

1 in 5 people live with disability. 1 in 5 people rely on basic things such as pathways to access their community. Don't talk about social inclusion when you are delaying pathways that would increase inclusion. Don't talk about social inclusion if I and others in other sections of the town without paths, pay $35 for the privilege of a coffee at a local cafe by virtue of my disability. Or are left to stay home yet again doing loops of a housing estate trying not to go stir crazy.


Michelle