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.

The hurting time…

Chronic illness becomes a way of life. You don’t stop feeling bad, but you do get used to it. Humans adapt. Pain becomes the new normal.

Most days spoonies deal with symptoms that would send healthy folk to the Dr. On bad days many would be considering 999. Chronic peeps, however, muddle through. Sometimes flare ups floor me. There are days when brushing my teeth is an epic feat. Others I function to varying degrees. I work & play & everything in between. Always, though, I hurt.

I pay the price if I over do it. I carefully plan routes & venues around how many steps will be required, if there is seating, stairs & so on. I pre check menus for items that won’t make me sick. Plan meals around when meds need to be taken. I do everything tired. It’s so hard to sleep & even when I do crash I wake feeling little difference.

Selfie of women’s sad face.

I found a way to work around my illness. Squeeze pleasure out of any socialising I can manage. I have become accustomed to cancelling things I really wanted to do. The list of things my body is no longer capable of grows. It’s ridiculous how sad felt upon realising I won’t jump on trampoline or turn a cartwheel again. Especially when I don’t even have much desire to do either. It’s just another limit. Another no.

I persevere. I follow Drs orders. I try all manner of suggested remedies. Acupuncture, cbd, floatation tanks, tens, yoga, the works. Some treatments help. There are medications that work wonders. Others that I need, but that cause problems. I take drugs to counteract the side effects of other drugs. It’s exhausting, but it’s my life.

Hand holding 5 pills of various shapes & colours

It is not all bad. I have privileges that many do not. My home is warm & safe. I have access to excellent care. I am gifted with skills & talents that allow me to pursue work I love. I have safety nets. I had years of being fit & well. I went to uni, got stuck into the partying & had the chance to travel a little. I’m loved. Pleasures great & small find me. My cat is the cutest. Life could be worse. I can handle this.

Cute black and white lying on back fluffy belly exposed

Except when I really, really can’t. There are days when chronic life overwhelms me. Days like today, when every inch of me is sore. Keeping a brave face when you’re throwing up for fifth time in as many hours is a challenge. Every day my first sensation is agony. Aching joints. Throbbing head. Burning skin. Churning stomach. Each little movement hurts. Remaining sedentary isn’t an option either. My arthritic parts seize up. Leading to, yup, more pain.

Food refuses to stay in my stomach. Don’t eat & the acid bubbles up my throat. Attempt to line my raw stomach and the vomiting makes everything worse. I can’t concentrate enough to distract myself. Sleep is illusive. There’s no escape.

Burdening others with my misery triggers my guilt. Keeping it all in is horribly lonely. Pain relief doesn’t work. Positive thinking is way out of reach. Some days are hard. It is too hard be grateful. Impossible to hang onto hope of easier times. Today I’m just thoroughly sick & tired of always being sick & tired.

Plus size women in green leopard print maxi dress  with walking stick

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Just give me a reason…

I’m lost. I’ve spent this year trying to reposition my future & navigate the present. I have tried new things, met new people, considered a million & one possible permutations of the next 30 years. I remain astray.

I’ve always had an ultimate goal to strive for. I had one non negotiable role. Motherhood was at the centre of all my plans. It was a reason to do better and the motivation to persevere. I worked so hard on building a safe, comfortable nest. I fixed all the parts of me that could be corrected. Found a way to accept the parts that couldn’t. I believed I had a purpose. I wanted children powerfully enough to force myself into viability.

When it became clear that it wasn’t going to happen I was destroyed. I knew I’d have to fight hard to create some other life. I was aware it would be painful, but I really did believe I could lay a new path. Life’s been a fucking journey so far, but I somehow eventually arrive at ok. I thought I could do it again. I told myself I needed time to grieve, to heal, to process. Then I decided I must push a little. Or a lot. Get to the next step professionally. Say yes to things that scare me. Date fun people, keep an open mind, pay attention to what makes me feel good. If I keep moving I’ll stumble upon my new direction, right? Wrong.

Happiness ahead in lights

11 months of forcing myself to breath. Smiling, rascalling, writing, resting, networking, researching, grabbing hold of anything that sparks any kind of anything. Honestly, it is getting harder. There is no deeper meaning to my efforts. I’m proud of work success. I am grateful for all my gorgeous people. I have love and opportunity. My life is mostly in colour. It’s just very hard to keep the grey from seeping in. Even harder to convince myself it adds up to a reason for being.

I’m hollow with zero ideas of what I should be full of. I’m still at the reminding myself of reality stage. Checking myself daily. I don’t need to remember that gorgeous Swedish name because I won’t be naming anyone. Reading that piece on delayed cord cutting is futile. I should get rid of the paint for the spare room. Forget all my child rearing dreams & schemes. Thinking of this stuff only causes pain, but I have nothing to replace it with.

Search lights fanning out of darkness

I don’t know what to do. I’m not entirely sure I even know who I am anymore. One day at a time is good and well temporarily. It does not hold up as a long term protocol. When everyone else takes their children home there has to be something that makes my life feel significant. I need a reason. I need more.

Don’t speak…

I’ve talked about the misguided things that people say in the wake of a miscarriage. Although these things can hurt, I understand that no harm is intended. I’ve been hesitant to tackle the other side, the people who say things they know will cause pain. Try as I might I cannot understand what they gain from this. Bear with me, I’m going to do a little blog therapy.

I can’t believe this has to be said, but here goes. A person’s stance on abortion is not relevant if the have a miscarriage. After my most recent loss it was suggested that my pro choice beliefs made my devastation over the miscarriage incongruous. Actually I think they were insinuating that it was hypocritical of me to grieve the loss of a foetus when I support the right of someone else to terminate one. Let me be clear, I support each individual’s right to choose. My experiences of pregnancy and miscarriage have only strengthened my pro choice convictions. Carrying a pregnancy and giving birth is an undertaking of such enormous magnitude that it should only ever be done willingly. My desire to have a child is not in conflict with my refusal to deny others bodily autonomy. I don’t want or need an abortion, but I will fight for those who do. Using that against me at my most vulnerable moment is cruel. Choice is the operative word. I had no choice in losing my wanted pregnancies. My dead babies are not a debating point. Attempting to litigate how upset a person is permitted to be is disgusting.

Choice clouds

Equally repugnant and heartbreaking was the proffering of surprise that I would be hit so hard by a fourth miscarriage. The reasoning being that I should have expected it may happen (I did of course) and that I should have become hardened to it by now. I can’t comprehend the lack of empathy it would take to think such a thing let alone say it loud. I don’t understand how one comes to the conclusion that reliving the worst time of your life over and over would make it easier. I can’t understand how anyone would imagine that having a worst fear realised is any less awful because you knew it could happen. Forcing someone to defend their distress is cruel in a way that must be deliberate.

I also wanted to touch on a group of platitudes that are offered frequently. Variations of ‘everything happens for a reason’, ‘god moves in mysterious ways’ or ‘it’s a blessing in disguise’ are never ok. I have been repeatedly assured that good intentions lie behind these phrases and I’m calling bullshit on that. They’re just lazy and ignorant remarks. Even a moments thought would uncover how inappropriate it is force your religiosity on someone. If you somehow take comfort in believing that ‘god’ purposefully snuffs out specific unborn that’s bizarre, but your business. To impose those ideas on fragile people in the midst of trauma is wilful ignorance. It is choosing to prioritise your own comfort above that of someone who is suffering.

Blurred light

I’m incredulous that I have to say any of this. It hurts to be forced into these unnecessary conversations. These aren’t blunders, they are examples of selfish agenda pushing. There is no kind reason to pursue these topics. It’s callous & inexcusable. Don’t do it.

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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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Look back in anger…

I’m angry. So angry that it’s hard to contain. The problem is there’s no specific target for my rage. It’s a generalised, tear everything down kind of fury. There’s no release. I can’t spew my anger over unsuspecting bystanders. Keeping it in doesn’t feel like a viable solution either. Where does one put all the free floating resentment that no one is actually to blame for?

Life isn’t fair. I came to terms with that fact a long time ago. I’ve accepted a lot of bullshit. Fought crazy & illness & disability & mistreatment & loss to build some sort of something. I’ve struggled, but I’ve rolled with the punches as best I could. There’s only ever been one thing that I’ve felt I couldn’t do without. One single imperative. When you’re willing to get by without so many things, it feels so desperately unfair to be denied the thing that would make it all ok.

I watch everyone around me do the thing I cannot. Some with such ease it leaves me breathless. For others it’s a harder journey, but they reach their destination. I love those people and I love their babies, but it’s so hard to be the only one stranded.

I’m angry that I have to do this again. I’ve been tricked into hoping. Now I have to deal with the fall out. I am mad at myself for being stupid enough to believe. I resent having to submit to medical interventions. I didn’t ever want to hear someone say they can’t find a heartbeat again or look at another bloody speculum. I’m furious that I’m still bleeding and that I have to cope with all that triggers. It’s agony to be constantly reminded that my body has failed again. It’s exhausting to face the nightmares and flashbacks of all other blood. I don’t want to relive each of the worst moments of my life whilst trying to get through this one. I’m sick of blood tests and transfusions and putting on a brave face. I hate that I don’t get to opt out. I’m not strong, I just don’t have option of walking away because it’s too hard.

I don’t understand why it has to be me. Why my babies keep dying when I want them so much. Why does the universe give life to those who can’t or won’t love their children? Every time I read a horror story of abuse it feels like a personal attack. I think of all those terrified pregnant teens, the adult women who can’t feed another mouth or just never wanted to parent and I wonder why it couldn’t be me instead. I’m not angry at the individuals; everyone should have the right to choose. I’m furious at whoever or whatever makes decisions. What could I possibly have done that disqualifies me?

I see people smoking as they hold their child and I have to restrain my scream. Each impatient, inappropriate or lazy exchange between a parent & child kills me. Even the standard complaints about bring tired and tantrums make me feel like punching someone. I know I’m not being fair, but it’s like bitching about your diet to the starving. Don’t they know what a miracle they’ve created? How can they forget how much that little person needs them to do the right thing. I know it isn’t easy. Kids are exhausting and all consuming, but they’re worth it. The joy outweighs the sacrifice.

I’ve had enough therapy to know that burying your feelings is never helpful. I know I can’t dig a deep enough hole for this much emotion, but I have no idea where else to put it. I can’t lose it with every person who is rude or mildly inconveniences me. I have no desire or intention of venting on the people I love. I used to work this shit out with a scalpel. That’s no longer an option. What do I do?

Wake me up inside…

Today I saw another one of those social media that purports to offer alternatives to self harm. This time the post also claimed that sharing this information would save lives.

I’m just going to be completely honest, this bull isn’t saving any lives. These are not credible alternatives to self harm. They will not stop an ill person from hurting themselves. They don’t solve the problem of why a person might feel the need to hurt themselves; they don’t even address it. In fact, in some cases they reaffirm the idea that hurting yourself is a good coping mechanism (just so long as you do it in a socially acceptable manner).

I’ve talked & written about why these suggestions are insulting until i’m blue in the face. I see others giving excellent arguments against such advice & yet this sort of thing is still the only information disseminated in the mainstream. So, I thought I’d try to talk about what actually can help one refrain from hurting oneself.

My suggestions are more complicated & time consuming & bloody hard. They don’t lend themselves to becoming a jaunty list to share in Twitter. The grim reality is that self harm is a grind and so is quitting.

Blood stained foot

For me the first step in getting anywhere close to stopping was understanding why I started in the first place. I truly believe understanding why a person self harms is crucial to recovery. Self harm isn’t the illness, it’s a symptom of it. From the outside identifying what is distressing you might seem simple, but trust me, it isn’t. There can be layers of trauma & hurt. A person may have a lifetime of issues woven into a complex fabric of pathologies. Picking that apart is intensely painful. Having pulled on that dangerous thread, you’re going to have to find ways address those underlying problems. They don’t simply disappear under a bright light. It takes time, professional guidance & huge bravery.

And that’s just the beginning. Next you have discern what you get from self harm; how is it helping you cope. What function is inflicting pain serving. Again, this is no simple puzzle to solve. My self harm had many roles. I was punishing myself, I hated the body that had failed me, I was avoiding emotions I couldn’t cope with, the blood was cathartic, I became addicted & a multitude of other reasons. Predictably totting up all the pay offs doesn’t negate them. There is more work to be done. One must weigh how healthy each function is and decide if it enhances ones life. For instance, probably not a great idea to be continually forcing myself to do penance, however it is a good idea to not be completely overwhelmed by sadness. You must find away to live without the unhealthy whilst also establishing new mechanisms to maintain essential uses. Of course all the time you are working away at your inner self you are dealing with addiction. Self harm is habit forming. So, your journey of self discovery/healing/madness has a background of overwhelming urges & powerful compulsions. To begin with you have to fight the full force of addiction every single moment of every single day. Plus, of course, everyone has their own additional problems to throw into the mix. Maybe you have co morbidities or financial problems or a family you’re trying not mess up with your illness. Life doesn’t stop when crazy calls.

None of this easy. It does not and cannot happen over night. It involves breaking down long held beliefs & opening yourself up to being scared and vulnerable. This post is just a simplified version of a process that takes years. It involves psychiatric professionals, medical intervention, medication, therapy, a support network, a&e visits & most of all trying to be honest. I understand why it’s easier to pretend you can draw on your skin or scream at a wall until you’re better. It is terrifying to a/ begin trying access the kind of intensive help needed & b/ expose yourself to pain you’ve been desperately trying to suppress. Believe me, selling yourself & others a lie is not the answer.

The truth is there are no tips & tricks for beating self harm. There is no magic fix or complete cure. I look at it like any other addiction. I will probably always want to cut, I have to do whatever I can not to. No amount of extremely cold water will ever change that harsh fact. When it comes right down to it, for me, the driving force in abstaining is knowing that I want other things more than I want to pick up that scalpel. Oh & sheer will power. I couldn’t have come to that realisation without more than a decade of therapy. I absolutely could never have exercised this level of control over the voice in my own head without putting in all that work.

I’m not going to say everyone’s story is the same as mine. I can’t guarantee that you can ever get completely better. I’m not. I can only offer you the hard truth of my experience & my certainty that there aren’t any shortcuts. Don’t share false hope. Let’s be honest with people who really need it. Trying to quit self harm is a nightmare, but there is hope that you’ll wake up.

Don’t tell me what to do…

In this world of self care & mindfulness it seems like everyone thinks they’re a therapist. Don’t get me wrong, sharing what works for you & talking about our mental health is great. It’s just that, to put it bluntly, some people talk crap. Others just regurgitate tired old advice that ain’t helping anyone. Man alive, I’m sick of it.

I want to talk specifically about the useless chatter surrounding self harm. I’ve been hearing & seeing the same patronising advice for YEARS. The most frustrating part is it often comes from people who really should know better. So, allow me to take you through why so much of the standard advice is just plain bad.

1/ Draw on your skin instead of cutting/burning etc.

This one usually takes two forms. The first opines that whatever relief/release a person may find in hurting themselves they can also attain by simply drawing on their skin. Now, let me ask you this, if drawing lines on yourself would make you feel better would you be causing physical trauma in the first place? The answer is of course, no. The components of self harm that serve a purpose vary, it may be pain, blood, disfiguring the skin or even a need to punish oneself. None of which needs are met by drawing.

The second part of the draw on your skin nonsense is the idea that you draw something pretty (often a butterfly) where you would normally self harm. The desire to preserve the ‘body art’ is then supposed to dissuade a person from ‘spoiling’ their skin. The stupidity of this idea is obvious. If actually scarring oneself will not prevent a person from harming themselves it seems very unlikely that spoiling a temporary drawing will. Even if by some miracle a biro butterfly were enough to assuage overwhelming distress, the body has a lot of flesh. Are people to cover every inch of themselves in rainbows & roses?

Butterfly drawn on skin

2/ Have a hot bath, cup of tea, blah, blah, blah…

Imagine the kind of agony you would have to be in to take a scalpel to yourself & cut for hours. Do you think a nice bath would magic that away? The answer is no. A bath helps you feel better at the end of tiring day. It does not release you from excruciating emotional pain.

3/ Distract yourself.

The need to self harm is powerful & persistent. For some reason lots of people (both professional & laymen) believe the urge is fleeting. I often see those struggling told to distract themselves until the urge passes. This advice betrays an ignorance regarding the workings of self harm. The need to hurt oneself does not easily wane. In fact, the longer a person self harms the stronger the compulsion becomes. Often it is impossible to focus on anything else. No sleeping or eating or thinking until the hunger to hurt is sated. It isn’t possible to distract oneself from that level of intrusion. When you cannot function on the most basic of levels watching a film or phoning friend are not options.

4/ Throw away your self harm tools.

The rationale here being that if one does not have the apparatus used to self harm, then self harm is impossible. WRONG.

As already discussed the compulsion to injure oneself is incredibly strong. Desperate people become ingenious. Trust me, when you really need to, you can hurt yourself with anything. Believe me again when I say those fraught & frenzied moments are when people make mistakes. As incomprehensible as it sounds self harm can be the very thing keeping someone alive. Asking or obligating an ill person to give up their lifeline is dangerous. It is also cruel.

5/ Ping your wrist with an elastic band/hols an ice cube in your hand etc.

My objections to this one are again two fold. To begin with it’s just ineffective. Self harm is both a habit firming & escalating problem. A person almost always experiences a need to increase the severity of their injurious behaviour. This takes us right back to the start. If the nip of an elastic band were sufficient, no one would be putting themselves in hospital via self harm.

A more serious objection, though, is the message this sends. Telling a vulnerable person that hurting themselves is ok, is a head fuck of massive proportions. Self harm is never the real problem, it is a symptom. In order to tackle self harm one must deal with the underlying issues. That is hard work, time consuming work. It’s much easier just to counsel harm minimisation. In doing so, you validate a sick person’s maladaptive thought process. That mental health professionals routinely tell patients that hurting themselves is ok is a disgrace. The basic premise of the hold an ice cube/ping an elastic band technique is that hurting yourself is a reasonable response to emotional turmoil. Just don’t do it badly enough to bother other people. By suggesting someone harm themselves in a small way you have shifted the conversation from, ‘let’s help you not hurt yourself’ to ‘hurt yourself in ways that do not draw attention to the act’. It is ignoring the root of the problem & allowing a person to believe that they are deserving of pain. It’s lazy, it counter productive & it is bullshit.

Hand holding ice

If you are struggling with self harm or you know someone who is, don’t feel helpless. When you are searching for help & find only these sort of suggestions it can feel like there are no answers. Whilst there are no quick fixes, there is hope.

See your Gp. If they don’t listen or offer help, see another Gp. I know this is exhausting at a time when you can least afford a fight, but please, don’t give up. If you have a friend or family member who can be your advocate, take them with you. You deserve treatment. You deserve care.

If you have badly injured yourself please seek medical advice. Again, if you have a friend or family member who can support you, take them along. If you do not & are worried about how you will be treated taking a copy of NHS NICE GUIDELINES can be helpful. You are entitled to be treated with the same compassion & respect as any other patient. Most emergency personnel will do this, but a few may need reminding of their duty. Being able to quote these guidelines helps in such situations. As scary as this may sound, do not put yourself at risk by avoiding treatment. You are worthy of diligent medical care.

If you are not yet ready or able to see a Dr, you can contact The Samaritans 24/7.

Call – 116 123 (uk)

Email – jo@samaritans.org

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.