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.

 

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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. 

Swallow it down….

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. 

Big is beautiful….

The Cosmopolitan website featured an interview with two fat women that caught my eye. Cosmo is not usually a publication I favour, but this interview was a rare beauty. An honest & mostly positive account of life as a plus sized woman. The article was a big hit with the plus size blogging community & a number of bloggers have answered the questions in their own words. I have decided to join the pack because the world needs more body positive voices.

How do you feel when other women around you complain about feeling/being fat?
This is a hard question for me because I have such mixed feelings. Of course it can make me feel bad when women who are much smaller than me complain about being fat, but I don’t think I have the right to police their thoughts & feelings. I am learning to love my body and I would like others to feel the same. However it’s not my place to tell others how they should feel about their bodies. I will always be supportive & body positive, but I’m not going to censure people for having insecurities.
How has your body image changed since high school/college?
I was slim when I was younger. I started to gain some weight at university, but I was far from plus sized. Despite that I always felt fat. I believed I was the biggest in my group of friends, wouldn’t wear certain types of clothes and generally didn’t feel very attractive. When I look back at pictures I realise this was nonsense. When I did actually become fat there wasn’t a huge shift in how I felt about myself as I already thought very negatively about my body.

Have you ever tried dieting? What happened?
Yush! I have dieted on & off for years. I am very successful at losing weight, but have never been able to maintain the loss. This is mostly because dieting always becomes very extreme for me. I start off trying to stick to a healthy eating plan, but it descends into a crazy regime. I usually end up restricting myself to about 500 cals a day, which anyone will tell you is not sustainable. I have also occasionally resorted to making myself sick. I’ll be honest, I feel fantastic when I lose huge amounts of weight. It just isn’t worth what I do to myself to achieve it.
Do you think in your case your weight is partly or entirely genetic?
I don’t think I have the kind of body that is ever going to be skinny, but no, my weight is not genetic.
Do you consider yourself healthy? Have there been instances where people assumed you were unhealthy?
I’m not healthy, but that has nothing to do with my weight. I am plagued by a number of chronic conditions, which greatly impact my life. On the other hand my cholesterol level is very good; my blood pressure is low and so on. Losing weight would not improve any of illnesses I suffer from.
Are your parents both supportive of the weight you are at? Have they always been?
Neither of my parents is ever cruel or forceful about their desire for me to lose weight, but I am aware that they would prefer me to be smaller. They have both been very happy when I have lost weight in the past.

How do you think retailers can improve clothes for plus-sized people?
Basically, I want the same clothes as smaller women. Just make all your clothes in bigger sizes & let me decide how I want to dress instead of making assumptions about what fat women want to wear. The only retailer I am aware of who do this are ASOS. I highly recommend their curve range. Oh & stop charging me so much.
Do you think plus-size women are judged differently than plus-sized men?
Yes. There are so many visible fat man on tv, films etc. Large men are portrayed as successful and attractive. You often see very fat men with gorgeous partners and fulfilling lives. On the other hand fat women in the media are usually the joke. They’re the stupid big women who thinks someone might be attracted to her (haha, gross) or the miserable failure. Male actors are allowed to be fat in a way that women are not. There is one version of female beauty in mainstream media and it is not fat.
Do you think there is an assumption made/stereotype that exists about plus-size people? How would you respond to it?
Lazy, unattractive, unsuccessful & unpopular. I respond to that by living my life complete with friends, accomplishments & hot men.
Do you think there is ever a right way or time to express concern about someone’s weight?
Do you suspect that someone has an eating disorder? If not, no.
What are the worst things people have said to you about your body?
I think I have been lucky in that I don’t often get negative comments about my weight. I’ve had men I’ve turned down resort to fat slurs. Similarly I have had a few people throw some names at me during arguments/disagreements. That doesn’t happen often & I tend not to keep folks like that in my life.

What have people said (or do you wish they’d say) that would complement your body or appearance?
I want to hear the same things as anyone else. I don’t need specific compliments because I’m fat.
Do you find yourself hanging out with women who are closer to your size?
Nope. I have friends of all shapes and sizes. Physical attributes have no impact on whom I form friendships with.
How has weight affected your sex life, if at all?
It hasn’t. To be honest I think I have a more active & exciting sex life than most of social circle.
When you’ve been single, has your weight affected your dating life?
Only in that I haven’t always felt attractive. I get the same amount of romantic attention fat as I did thin. It hasn’t stopped me dating anyone I wanted to date. Nor has anyone I’ve been in a relationship with ever had a problem with my size. I am sure there are people who look at me & think yuck, fat. Since I have no desire to date anyone harbouring those feelings it has no impact on my life.
Do you feel weird if the guy you’re with only dates larger women?
I would if he was only with me because I was fat, but that goes for any other single attribute. I want a person to want all of me. Having said that I have no problem with someone being attracted to larger women. If I did I would be saying there is something wrong with being fat. Why shouldn’t folk prefer fat women? As long as that’s not the only attraction, it’s fine with me.

Do you feel weird if he’s only dated slimmer women before?
No. I’m not really interested in who he’s dated before. He’s with me now; he clearly likes & fancies me. Who cares about the past?

You can find the original interview here
http://www.cosmopolitan.com/sex-love/fat-women-real-talk