relationships

Make it up as we go along…

~ somethinginthewayshemoves ~ 2 Comments

Historically, relationships have been a fairly fraught affair for me. I have found myself involved with various types of difficult men. I never quite managed to align my expectations with theirs. Someone always felt short changed or infuriated or plain hurt. 

I’ve had men who wanted to control or tame me. Guys who loved my weirdness until they realised it was permanent & the novelty wore off. There have been proposals; both accepted & rejected, but I never did make it down the aisle. I’ve fallen hard for those who could not make me a priority & struggled to breathe with those who couldn’t focus on anything else. 

I’ve dumped so many men for so many reasons. The tiniest of infractions & the hugest of betrayals.   I’ve disappointed by being too ill or too strident or too independent or too me. Their lack of strangeness or loyalty or compassion has disappointed me right back. To be honest I had given up on the idea of finding someone & just being happy. I watched everyone I know meet someone & like them & build a life & make it work. 

I thought, maybe, I just wasn’t built that way. All my love songs were heart wrenching. And so very complicated. 

Then I took a chance on a cheeky smile with a social conscience. This time, romance is easy. For once we might be on the same page. After all this time, I met someone I liked & I want to see where it can go.  So far it’s taken me to fun & comfort & excitement & care & trust. Oh & access to a really sweet arse. 

Sure, we bicker. He is full of nonsense. He never picks up his socks. He always wants to debate my veganism. I have tell him to suck my dick way too much, but I feel like we’re on the same team. I don’t feel pressured to be anything other than I am. We’re just taking life as it comes & it feels good. 

A day in the life…

~ somethinginthewayshemoves ~ 3 Comments

This morning I was rudely awakened at about 3am. The ill mannered culprit was pain. This time it was intense & centred in my stomach. So, i got up, took my stomach meds, some painkillers & hoped for relief.

Relief was not to come. I lay in the dark for half an hour waiting for the medication to work it’s magic. My body was having none of it, a wave of nausea washed over me & I knew I was going to be sick. I ‘rushed’ to the bathroom where I proceeded to vomit repeatedly. Each violent wretch sent pain shooting down my back. An hour later I’m sweating, dizzy, sore & unable to get off the bathroom floor.

All the throwing up had triggered some hefty heartburn & reflux, but meds weren’t  an option for fear of kicking off more vomiting. I slowly picked myself off the floor & retreated to the living room. Once situated on the sofa, I turned out the lights & put Joni Mitchell on low.  Over the next several hours,

I tried breathing exercises,

put on my tens, 

paced, 

drank mint tea,

curled into ball,

took more medication, 

vommed more medication 

watched the sun come up

& resigned myself to having a rough day. 

That’s exactly what happened. Today was a riot of pain. My stomach continued to be a nightmare. My back ache progressed into agony. I was intermittently sick throughout the day. Thus I had to cancel appointments. Most of the writing scheduled for today wasn’t even attempted. More housework piled up as I struggled to control my pain & rising panic. An acute flare like is this stressful because I never have any idea how long it might last. I could be in better shape tomorrow or I could be in hospital. I live alone & I work freelance; if I don’t do it, it doesn’t get done. I worry. A lot. I grow concerned about 

staying solvent, 

my professional reputation,

keeping my home presentable,

keeping myself presentable,

how I will keep important appointments,

letting my loved ones down, 

losing control of my mental health, 

Basically, I worry about everything, from the state of my kitchen floor to the state of my relationship. Of course all this stress is detrimental to my health. Especially with regards my to stomach problems, stress is the enemy. Likewise, stress is an anathema to sleep. Lack of sleep makes illness more difficult to cope with, but of course pain & illness also make it harder to sleep. If I can’t manage my anxiety it will spiral into panic attacks & depression. Any decline in my mental health reduces my productivity, my ability to leave the house & my chances at engaging with the world positively. Around & around I go. Symptoms exacerbate symptoms all adding up to an almost permanantly exhausted, scared, sick & sore me. 

And this is my life. This level of illness is not rare. My good days are not pain free. I don’t know when the bad times will hit. I wake up every morning with no idea if I’ll be able to get out of bed. Chronic illness is fucking nightmare. It forces you let people down, to miss huge chunks of your own life & to live that life always walking on broken glass.  

Let’s talk it over…

~ somethinginthewayshemoves ~ 3 Comments

Chronic illness is a bitch. The pain, the uncertainty & incapacitating symptoms are all a daily battle. Oh, but there is so much more. More that isn’t really talked about outside of spoonie circles & I thought it was about time that changed.

Obviously chronic illness covers a huge range of conditions & everyone’s experience is different. Thus I talk from my own personal view point with some input from fellow spoonies. Here are some of tricky issues that we’re quietly dealing with.

Travel

I mean any & all travel. From trying to get a bus to a hospital appointment to trying to cross the globe. The world is not spoonie friendly. 


Have you ever sat in those seats at the front of the bus that are meant to be reserved for ‘elderly & infirm’. I’m sure you tell yourself it’s fine because you’ll move if someone needs them, right? Well, you can’t always tell by looking that someone needs that seat. Having to explain yourself & ask a stranger to move is not easy. Thus I have collapsed on buses, cried from pain & just had to get off because I couldn’t stand any longer or make it to a seat further back. Which is a pretty good good analogy for trying to get about with disabilities. It can be hard as fuck without anyone noticing. 

Being chronically ill means planing every single outing in detail. Working out if you can manage to get to a bus stop or from a station to the place you’re actually going. Thinking ahead about stairs & where toilets are. Planning when you’ll need to eat, if you’ll be able to eat & how meds will work around that. Worrying about queues & how slow you move & often you’re going to have to sit down. 

I can’t tell you how many times I’ve not participated in something I wanted to because the logistics were just beyond me. 

Relationships

Whatever your illness there will always have to be that early days conversation about what exactly is wrong with you. In my case I have scars to explain & a whole bunch of fairly scary details to talk about. In the beginning I thought that would be the hardest bit, but it so isn’t.
The worst part is all the normal things that are so much more complicated for me. I am completely aware that sometimes I’m no fun. I say no more often than most people. I have many (too many?) limitations. I’ve adapted to that, but I never know if others will. 

It’s scary & stressful to try someone new. They might well get fed up accommodating me. Every time I say I can’t make a social event or have to admit that I don’t fell well, I worry. Maybe this is the point they’ll decide a spoonie girl friend is just not worth it. The truth is, I wouldn’t actually blame someone for having those thoughts. After all, life is for living .

That’s the real kicker, it’s not a problem that can be resolved. Wanting to live a life that I’m not fit enough for doesn’t make anyone a bad person. It’s just another thing I (we) get to think about when I can’t sleep. 

Side Effects

Sometimes the treatments are worse than the illness. Almost every medication I take produces a side effect that impacts on my life. In fact I take medications to help with the side effects of my medications. I’ve taken drugs that have made me vomit, itch, gain weight, lose weight, have double vision, dizzy spells, palpitations, acne, the list goes on. 


Every treatment one is offered comes with a list of possible side effects. Chronic illness is a constant balancing act. How much relief will I get from my symptoms & will it be worth the new problems it will cause? 

I often illustrate this problem like this.

Severe anaemia can cause itchy skin & angina. 

A blood transfusion & opioids can treat these complaints.

Guess what a major side effect of both transfusion & opiates is, yup, really itchy skin. 

Welcome to the conundrum of chronic illness. What cures me might well kill me to. Fun!

Money

Hardly anyone likes to talk publicly about their finances. It’s awkward & it’s private. I hate talking about money, but honestly with regards to disabilities, someone has to. Having any kind of disability almost always screws you financially. What work you can do is limited. Employers will silently discriminate against you & the current  government will loudly throw you to the sharks. All the while ones disabilities will incur extra costs at every turn. In terms of cold hard cash, illness will cost you. Lots. 


The Embarrasment Factor

Never underestimate the power of embarrassment. All of the things I’ve discussed here can make a person feel really small. Be it feeling red faced about a misbehaving stomach or the facing soul destroying humiliation of having to justify your right to be alive at an ATOS assessment. Humility is a lesson spoonies learn over & over. 


Imagine how you felt the last time you farted somewhere you wish you hadn’t & the feeling of falling over on a crowded street & having to talk to a dr about a really cringey complaint & admitting you’ve failed at something important & having to tell the world that you need help with things everyone else can do. Now imagine coping with some combination of all the above every day. Welcome to my world. 

Swallow it down….

~ somethinginthewayshemoves ~ 5 Comments

I’m struggling to believe that Jagged Little Pill is twenty years old this month. How can two decades possibly have passed since Alanis first got angry? More importantly how the hell did I get so old?

  

Jagged little pill has always been special for me. From teenage not quite angst to bonified adult pain, Alanis has had my back. So, I thought I’d pay tribute to an epic album & the journey we’ve been on together. 

Let me take you back to the start.  I’m 14yrs old & life is good. I have lovely friends, great home life, I do well at school. There is no teenage misery for me. There is however, frustration; a sense of being on the brink of life. I’m beginning to build a picture of what I want from life. I’m challenging some the things I’ve been taught & I don’t feel like my life view is taken seriously. In amongst all the vexation is an excitement. Possibilities are starting to fizz, I am aware of the power of youth & I can’t wait to weild it. I see right through you encapsulated all that I was feeling & I took every opportunity to sing it at the top of my lungs. 

Fast forward a few years and I’ve finally extricated myself from an unhealthy relationship. I’m heartbroken & angry. Angry that someone has been so cruel & furious with myself for allowing it. It’s Alanis to the rescue, I am certain I’m not the only woman who played You oughta know at full blast, cried her eyes out & felt a little better. 

I had some dark days in my twenties. Dealing with the trauma of miscarriage & resultant depression whilst trying to hold my life together took it’s toll. I became really ill & eventually had to ask for help. The lyrics to Mary Jane really touched a nerve back then. The realisation that I had to admit I wasn’t ok was a hard one, but there was some relief in listening to words I could relate to. It’s amazing how powerful just not feeling alone in your predictament can be. 

Anyone who has experienced difficult periods will tell you that it makes you really appreciate good times. When you’re fighting through bleak lows of severe depression the first glimpses of being ok are beautiful. The relief of finding that right now in this minute you are content makes you want to sing & dance. Hand in my pocket is the perfect tune to accompany this feeling. It’s not about joy or any of the big feelings. It just perfectly sums up the sensation of knowing you can make it. It feels good to believe that  ‘everything’s gonna be fine fine fine’.

A big part of maintaining happiness is knowing when to put yourself first. I have not always been great at this. Knowing when to say no was a hard lesson to learn, but such a valuable one. Walking away from toxic, all take & no give relationships was like shedding dead weight. Suddenly Not the Dr made so much sense. Reaching the conclusion that I was not responsible for other people’s happiness freed me to enjoy the peope who mattered. Sometimes you have to let go. 

You learn is bitter sweet. It signifies getting to a place in my life where I  I’d learned from all my trials. It’s nice to feel in control. In an unfortunate twist of fate mastering one set of problems coincided with the onset of others. This song also represents my chronic illness. The notion of a jagged little pill brings to mind both the handfuls of meds I must take & the metaphorical swallowing of hard to digest facts. 

After all that serious stuff this post needs a little love. Head over feet celebrates that moment when you know for sure that you’ve picked a good one. There is something wonderful about the kind of love that comes without a fuss. Head over feet is all about the bliss that comes with being with someone who treats you right. 

There you have it. Jagged little pill has been my musical friend for many years. There aren’t many thing in life that you love as much at 34 as you did at 13 & this is one. Every time I hear this album I still get all the feels & for me that’s the mark of a classic.