Feels like home to me…

Happy Valentine’s Day, everybody. Be you a lover or a hater, I hope you’re having a good day. I’ve always liked it. It’s nice to have day to celebrate love. I mean sure, we should be spreading it all year round. It is still nice to have day dedicated to getting smoochy.

I don’t have one true love this year, but I can still have a little fun with v day. Fun aside, I find this year that I am thinking about someone in particular. Someone I probably ought not to ponder over, but I can’t help myself.

Sometimes you feel a connection to a person even when it makes no sense. You go through the hurt and happy. Back to pain Then more happy. It’s impossible, puzzling & never going to work. You still can’t entirely walk away. Or is this just me?

Cléa Lala

I’m not sure why easy rarely features in my romantic choices. Perhaps I like a challenge. I do know it’s hard to give up on a person who feels like home.

I am anything I want…

I’ve had another sleepless night and I used the extra hours to clean up outstanding admin. One of the tasks I enjoy the least is dealing with the angry dms/emails etc I get from random followers who hate fat, single woman being happy & online. Recently there has been a sharp upturn in the number of messages telling me I should be ashamed, i’m a bad influence, should have more self respect… To those I say, SUCK IT,

close up of red haired woman with retro glasses &  septum piercing sipping straw in iced drink

You’re not a slut (unless you like that term) if you enjoy lots of sex. Nudity is not inherently sexual and even when it is, it is not dirty. No one has to justify their sexual agency. I’m a grown ass woman with a healthy sex drive & I give zero fucks about what anyone thinks of that.

I have a sex life. Fat women are desired. I’ve had various partners. Some were great ideas others not so much. I’ve shed some tears, discovered things about myself, been frustrated & had a fucking ball. I’m am sick & tired of the contempt for female sexuality. I’ve regretted some of my sexcapades, but I’ve never been ashamed. In fact, I’m delighted to offer some high(& low)lights in service of the sex positive feminist agenda.

There was the Brazilian bus driver turned surgeon who was fun and precipitated an embarrassing incident.

The night club bouncer I fell arse over elbow for only to have him wreck my life.

The university professor who was kind, smart, committed & gorgeous, but just not the one.

The stunning aspiring stage actor who had the sexiest curves I’ve ever seen. She soothed my broken heart, boosted my self esteem and invited me to her wedding years later.

The film critic who gave great date and turned out to be full shit.

The part time novelist who was a talented writer (& lover), but wanted me much more once he couldn’t have me.

The librarian union rep who presented as the ultimate lefty. Unless it related to feminism, then he was the laziest of ‘not all men’ misogynists.

The post man who was just a terrible rebound mistake and had to get up way too early.

The student who’s very catholic Mum popped in when were having sex on the sofa. The 3 minutes it took me to find anything to hide behind were probably the most awkward of my life.

The bar manager who got clingy two dates in despite telling me she didn’t want anything serious.

The biologist who was fine really, but always thought he knew best. Good time in bed. Frustrating conversations.

The IT analyst who wanted to move way too fast. Very romantic, but scared the shit out of me with detailed future plans.

The tax man who started out a lot of fun. Settled into something comfortable. Ended up a huge cowardly disappointment.

The electrician who was a whirlwind. Crazy night outs. Cuddly weekends watching old movies. Fizzled out fast.

The newly divorced Mum who was actually pretty incredible, but really wanted to live the party girl life. I was just too old & tired for clubbing on a Wednesday.

The rugby player who was an entirely different person in front is his friends. I met a cool, sensitive guy. Every time we went to the pub I was with a rugby boy cliche. Big nope.

The lottery fund allocator who could have been perfect if i wasn’t so ridiculously bad at recognising the nice guys.

The mental health worker who was all erudite and kind. Big social conscious. Fostered rescue cats. Was also way too interested in my scars in bedroom. Creepy & ugh.

The photographer who was exciting & hilarious, but only because he took copious amount of cocaine. Pro tip ladies coke is no friend to the old erection.

And more.

I have a favourite who blew my mind. There were crazy hot folk, guys that others thought weren’t attractive at all, relationship, flings & the odd one nighter. It’s all fine. Every (consensual) sexual encounter was ok for me. Sex is fun. It’s natural. It can be as big or as little a deal as you feel it is.

ly is posing in black underwear with red faux suspenders tights . She has her arms above her head

Safe sex between consenting adults is A OK. Have as much or as little as you want. Talk about it or don’t. Your body is yours to do with as you please. Enjoy.

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I’ll be your mirror…

I’ve been thinking a lot about relationships lately. I’m preoccupied by the dynamics of my own romantic history, but also the societal norms. The things we tell ourselves, the advice we give and believe.

There are tropes I find easy to dismiss. I know you don’t need to love yourself to have others love you. Lots of warm, kind, excellent folk don’t like themselves all the time. Self doubt doesn’t make good qualities any less appealing. Obviously loving yourself is beneficial in countless ways. Whilst you’re working on it, you aren’t exempt from third party estimation.

I’ve never bought into ‘you’ll find them when you’re not looking’ thing. I found a few lovely people by actively looking. They might not have been forever, but they were good experiences. A couple I’ve kept around on a platonic basis. It’s always struck me as daft advice. The exact opposite of the accepted wisdom on goal achievement. We tell each other to put the work in when seeking career advancement, not to buy the first thing we like when making big purchases, practise hard to develop new skills and so on. If every other life enhancement requires careful consideration & applying ourselves why should we leave finding a life partner to chance. Sure, a meet cute is romantic; it’s just not all that realistic for most people. Very few things of value fall into one’s lap. Putting yourself out there appears sensible.

There are many more obviously problematic cliches. I’d love to bin that ‘if you can’t handle me at my worst’ nonsense. It lends itself way too easily to toxic situations. Everything happens for a reason is similarly flawed. You’ll drive yourself crazy with that one. Sometimes life is random & people are fuckwits, you cannot base decisions on chaos. Trust your gut is 50/50, lots of us have less than stellar instincts. Plenty of fish in sea, tonnes of utter garbage too. Love at first sight is usually just desire. We each have more than one soulmate and karma rarely gets involved in romantic entanglements. I’m sure you get my point. I’ve had my share of passion & I’m not buying the prosaic instruction.

If you can’t handle me at my worst, you probably have healthy boundaries in neon lettering

Or am I? I do find myself stuck on some well worn pearls. I can’t completely rid myself of the notion that how we feel about ourselves inform the partners we choose and how they treat us. Nor can I discount, we get the love life we believe we deserve. Perhaps these speak to my own experiences & mental struggles. I can see how that would make sense. I often think of myself as difficult. I’m uncompromising on many points, strident, damaged. I recognise I also have more endearing characteristics. Still, you could summarise most of my amorous affairs as complicated. Kind souls with simpler offerings rarely hold my attention for long. Out & out baddies are likewise swiftly disguarded. I learned early not to let anyone smash my heart to pieces. However, I will absolutely keep coming back if you make a riddle of slowly dismantling the pieces.

I think loving me is laborious, so I choose relationships with challenging dynamics. Can it really be that simple? I know my penchant for the fickle isn’t unique & many other unhelpful patterns exist. Believe me, taking all the blame isn’t a huge leap for me. On the other hand, wouldn’t establishing that as fact encourage the beliefs that started this? Confirming that one’s perceived maladjustment is the cause of failed romance seems to solidify those negative beliefs. That strikes me as sticky little trap.

I feel there has been a shift in the focus of romantic guidance we consume. These seemingly deeper insights are definitely well intended. I think we offer this advice because we want to protect people we care for & we believe it for self preservation. Having control is comforting. Thus it’s tempting to internalise blame. If you’re at fault, you can fix it. I’m just wondering if it all becomes a self fulfilling prophecy. When think we pick the wrong people and we accept the wrong behaviour, don’t we just lower our opinion of ourselves? I worry that just leaves a person open to more manipulation & ill treatment.

We accept the love we think we deserve in black lettering on pink background

It especially gives me pause because I see it most often aimed at women & people with mental health issues. It’s perplexing. On one hand introspection totally makes sense. On the other it plays into really unhealthy existing thought patterns. Basically I’m wondering if in the guise of taking responsibility we’re actually setting ourselves up to fail.

I’m in danger of going full Carrie Bradshaw with all the relationship pondering, but what do you think? Are there any wise (or not so wise) words that have had an impact on you?Carrie Bradshaw from s&tc with text ‘when it comes to life & love, do we accept our worst reviews’

And a happy new year…

I think it’s fair to say that 2019 has been a shit show. A political nightmare on a global scale. Environmentally disastrous & frankly a genuinely worrying time to be alive. My faith in humanity has taken a battering this year.

It won’t be like this all the time stencilled onto a pavement

It hasn’t been an especially uplifting 12 months on the personal front either. There’s been loss, illness & a struggle for meaning. It has all felt a little pointless at various stages, but I made it. Here I am living & learning. Carrying on.

Woman in bed with teary eyes

The year got off to a heartbreaking start, but there have been ups. I cemented a crucial relationship & extricated myself from one, which in hindsight, I hadn’t wanted to be in for quite a while. My people have proven once again how marvellous they are. Circling around when needed & letting me be when required.

Txt conversation

There have been a few professional triumphs. I returned to public speaking (terrifying), embarked on a little social media consultation & posed for some excellent photographers. I produced writing I am proud of and my expanded audience significantly.

I applied myself to the task of enjoying life. It’s not always easy when dealing with chronic & mental illness; I’m pleased with my progress. My little ones continue to be of endless interest. I have immersed myself in the joy they bring as often as possible. I’ve allowed myself to enjoy time with someone lovely & undemanding. I even had some successful surgery.

Selection of pictures of children

Most importantly (I think), I have released myself from the need to know where I’m going. I always thought my biggest purpose was motherhood & letting go of that dream has been challenging. I felt bereft of meaning. It has taken time & wise counsel to discover that perhaps I don’t need all the answers right now. It’s ok to take some time to breathe & live. Hopefully other options will present themselves. In the meantime I can work on career goals and hopefully continue to squeeze maximum happiness out of life.

Path continued painted cement ground with foot & walking stick

So, it’s true. Life goes on. I suppose that’s as true on a larger scale as it is personally. We can still strive to be the change. Sadly, it looks like there will be lots of opportunities to test the courage of our convictions. I hope we prove ourselves brave.

Mirror image of fat women smiling

*

* Photography Credit – Megi Aben

I give up…

The universe is determined to give me opportunities to discover social faux pas. The events of the last weeks have revealed to me a host of new things that lots of people say when one talks about miscarriage. The vast majority of these comments are very well meant, but nonetheless, have considerably missed the mark.

Being open about having had multiple miscarriages seems to unfurl two main threads of conversation. The most prolific being enquiries as to why it keeps happening and what I have done about it. I think I know why people ask these questions. Partly fear, no one wants this to happen to them. I suppose people think if they know the whys they can avoid it or fix the problem. The other side being an assumption that everything can be fixed. I understand that, we are so used to living in a world where things can be cured or treated. I know from having chronic conditions that people are often confused to learn that some things can not be corrected. In the case or recurrent miscarriage this enquiry is unhelpful for variety of reasons. Firstly miscarriage, recurrent miscarriage and infertility often fall into the category of ‘don’t know’. About half of those who suffer recurrent miscarriage are unable to find a reason after testing. I am one of those people. I have had all the standard tests and investigations to little avail. I did have some adhesions that were successfully removed and I have PCOS, but no Dr I have consulted believes that to be the cause. The short answer is, no one knows. Asking this question isn’t helpful. If a person doesn’t know, you’re just underling that difficult fact by making them explain it again. If they do, they may not want to discuss such private and sensitive information with you or anyone else.

Offshoots of this such as, Have you seen a Dr about this? You should get another opinion, My friend did such & such or surely there must be something they can do, are unwelcome. I have had four miscarriages. I have lost four children that I desperately wanted. Of course I have done everything within my power to find out why and prevent it from happening again. The suggestion that I haven’t offends me. It indicates that you think I am either stupid or careless. I understand that wasn’t the intention, but please, think before you speak. It’s also important to be aware that the NHS usually won’t begin these investigations until after a third miscarriage. Not everyone has the resources to seek private medical treatment. Anyone in that situation doesn’t need nosey salt in their wounds.

The other comments this loss has garnered are of the don’t give up variety. A lot of people have reached out to tell me there’s always hope. The have shared their own experiences of loss or struggles to conceive and assured me that miracles happens. That they eventually had their baby and it was all worth it. I know you think you are helping. I know you are trying to be kind. Let me just say this, not everyone gets a miracle. We are not all able to try again. There are limits to what the body can do, physically & emotionally. There are time constraints. Relationship constraints. Financial constraints. At this moment I don’t feel like I have another try in me. Losing another baby would destroy me. Maybe I will feel differently in the future (it would have to be the fairly near future), but I don’t think so. Facing the reality of my limitations is not weak. Recognising that I can not square this circle is not giving up.

I don’t intend this as an attack. I realise these aren’t purposeful attempts to hurt. I just want to have an open discourse. I think these confusions arise because we don’t talk about this topic enough. If you want to offer support to someone who has suffered this kind of loss it will be appreciated. Simply offering your condolences and assurances that you are available is enough. Respect that everyone grieves differently and your kindness will cherished.

 

Make it up as we go along…

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…

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…

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.