Confusion and laparoscopy surgery date

A lot has been happening. A lot.

So we have been to the hospital again, we are getting a laparoscopy, but the doctor I think has made his mind up about us. He thinks that they won’t find anything inside us when they look and that this is psychosomatic, or just pain for no reason.

I’m on a period I’m not meant to have because I’m on medicine to stop them from happening, a period that’s now lasted for 3 whole weeks. 27 is upset, nineteen did the hospital appointment and is upset because she feels like she failed to get us proper help. How can our doctor ignore a period that’s been running for three weeks?! Three. Weeks.

We keep thinking about the laparoscopy and our insides roll. We’re supposed to be having an endometriosis specialist come to do the laparoscopy, but it might also end up being our usual doctor. We are so frightened that nothing will be there, despite seeing blood filled cysts on scans, despite the pain that’s stopped us from leaving the house or showering every other day, despite the three week long period that’s apparently “normal”. None of this is normal, but yet somehow we feel gaslighted into believing that we have made a huge fuss over nothing… Whilst simultaneously not being able to get out of bed in the morning, due to pain and fatigue.

The Dutchman didn’t see the appointment as being as bad as we thought it was. He thinks our doctor wanted to prepare us in case they find nothing. I’m so upset and nervous, but there’s nobody else to talk to apart from the Dutchman. He’s being amazing, but we are so stretched to our limits. What’s worse, pain in our spine has returned, along with stiffness we’ve never had before. It feels like I have fallen and smacked my spine on the floor, but that hasn’t happened and there are no bruises. I’m so scared.

The younger ones and I want to help the older ones, but I kind of feel like I’m not doing well myself. We’ve asked the Dutchman to book us in for an appointment about our mental health. We don’t think we are doing that well at all, and we need some help.

We will keep you updated. The laparoscopy is on the 30th April.

Love, Sixteen xxx

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Mother’s Day musings.

I have an unpopular opinion surrounding Mother’s Day.

We’ve just had it in the UK, and there were reams of messages and photos posted on walls so people could see just how much everyone we know loves their mum and how awesome their mums all are. There were treats, trips out to spas and salons, afternoon teas…

I always feel weird when it comes to Mother’s Day. The weirdness is twofold.

One: my mother has been a lot better in recent years. She’s been less angry for no reason, more willing to listen, more supportive and less dismissive… But, when I was a child, she was angry, uncommunicative, resistant to any form of “bad” emotion from any of us (me or my alters) and was emotionally neglectful. We all have deep scars left over from this. Clara is processing hers and not doing well because of it. She always thought it was her fault that she couldn’t make Mummy happy, but it should NEVER be a child’s job to support their mother’s emotions.

Fifteen is angry because she got the brunt of our mum’s anger and fear about having cancer. I think mum would like to believe she was fine and not depressed or frightened at all, but we know better. She worked all through her chemotherapy… As a dance teacher… Can you imagine the physical and mental strain she went through?! She didn’t get help, she didn’t ask for any extra support at work… She powered through, doing me and her a lot of damage on the way.

Sixteen is angry and upset because she never got it with our ex. She knew he was bad news, but didn’t try and get any help with dealing with him. She didn’t try to get any help with mental health stuff apart from an awful Christian counsellor, who backed our abusive ex up. Sixteen is still hurt and feels she doesn’t really have a mother.

All of us want to know why she still continues to work on Mother’s Day. Why she won’t listen when we explain that we have a chronic illness, and it’s not going away. Why she keeps pushing us to get a job, because, apparently, we need one. Sitting around in the house all day is bad for us?! Who knew?!

It hurts so much when she says this, because she’s not really accepted that the Perma-Smile girl is gone and never really existed in the first place. She was a conditioned front, placed strategically in view of everyone so that they would be happy. Mum can’t see that she was a front, and that we are hurt. We can’t even tell her that we are hurt because of her, because she makes the conversation all about her.

We still love her, which is very upsetting,and we know she loves us. It’s just that the love is conditional and always has been, because our grandmother taught her that that’s how love is. You have to earn it, you don’t just deserve it. What a damaging way to raise a family.

This Mother’s Day, I hope everyone hurting like us manages to stay away from the propaganda that you Must At All Costs Love Your Mother. If your mother was abusive, there’s no need to keep loving her. If your mother was absent emotionally, like mine was, it’s ok to love her from a distance and seek love elsewhere. My dog, my husband, and the new cat, not to mention my friends and sister all love me for who I am not what I do. That’s all we wanted from her.

The other is that we could have been a mum, but the miscarriage stopped that. We still hurt. It’s easier now that we named our Fay, but the scar lingers.

Take care, everyone.

Love, 15, 16, Clara and 27.

Seriously

… the next post I see telling me that mindfulness is the cure for chronic pain, I am going to tear shit down so hard.

I have just had a panic attack over it. A bad one.

Mindfulness is NOT HELPFUL. I have PTSD, DID, depression, depersonalisation, derealisation, chronic pelvic pain, chronic back pain, a horror of hospitals and clinics, and have just read an article about how mindfulness will greatly help me get over these things.

Like, it actually said (no sources, citations or academic evidence anywhere) that it (along with CBT) would help reduce my symptoms. I just…

There is new evidence that anyone who suffers in any way from dissociation should NOT participate in mindfulness. It has, in our experience as a multiple, fucked with our sense of reality so badly that we ended up dissociating worse. It is good enough as a quick fix for stress, but anything more serious than that needs medical attention or psychological attention, depending on what the problem is.

Sitting with the pain and not judging it, allowing it to flow through me, is what mindfulness teaches that I have to do. No, thank you. I do that every damn day and I am unhappy and tired of trying not to judge my pain. I judge the hell out of it. It hurts. It has robbed me of a dance career, a job as a dance teacher, a sports massage therapist and now, I’m unemployed. Why am I not allowed to judge that? Why am I not allowed to have an opinion on that?

That’s other upsetting thing is that you’re supposed to accept your pain, according to mindfulness. Yeah, cool. Nice. So I have to learn to live at pain levels five to seven (eight to ten when I’m on my period) and accept that? I don’t have to keep fighting for chronic illness awareness? I don’t have to keep demanding research into chronic pain, and that it’s properly funded, in the hopes of finding some sort of better treatment?

I accept that I am in pain and that I have a chronic pain condition. I do NOT have to be happy about this. I do not have to reach a “zen stage of acceptance” over this. I acknowledge that I hurt every goddamn day, but why am I supposed to be ok about that? Why am I supposed to be ok with the fact that there is basically no funding going into chronic pain, women’s chronic pain specifically, yet vasectomies get allocated more funding? Why am I supposed to be ok with the fact that I have no real treatment options if my chronic pain isn’t endometriosis (which it is looking like it isn’t)?

Why are the treatment options I am given all mental health ones and not physical? Why am I not offered surgery for agonising pain and instead have to tolerate condescending doctors and articles and members of the public telling me that my pain is in my head? It isn’t. Push on my ovaries and I will scream. The pain isn’t in my head, it’s in my body.

Why do I also have to rule things out when both I and my doctor are fairly certain that the treatment I have to have (pelvic floor therapy) is not going to work? Why do I have to keep telling everyone I talk to in the medical profession that I am in physical, localised pain?

I figured it out after a lot of crying.
It’s because society wants me to take responsibility for my pain and admit it’s my fault.

I didn’t eat enough green veg as a kid. I haven’t run to the moon and back. I haven’t doused myself in kale, tried enough yoga (it also hurts a lot, btw), done enough exercise, had enough psychotherapy, walked it off, wished it away. I have failed because I’m in pain, and it must be my fault, because I’m a woman who dares to speak up about the agony I live in.

There are studies done about this. Women who are rushed to the hospital in agonising pain are told they’re exaggerating, and to please stop it or the doctor will not see you (been told this). Women who want help or advice with chronic pelvic pain are told that the reason they hurt is because they’ve been traumatised. They’re offered no physical help with this apart from the ubiquitous mindfulness drivel. Because of course, as we all know, getting a trauma sufferer to focus on the sensations of a flashback hasn’t ever made anything worse… (Was told to do this once, it backfired into a three hour long panic attack).

When will society stop telling women that their pain is their fault? When will society stop peddling crappy cures for our all-too-real physical pain? When will society stop telling us that the key to alleviating our physical pain is to talk it away through therapy? That’s not going to help.

As someone who’s been through therapy, initially we treated our body pain as body memories. It didn’t go away no matter how much we tried to think of how safe we were, how strong and capable we were, how smart we were and how much we had grown. It stayed, a lacerating feeling inside our womb. No, not our intestines, that one doctor: IBS is over diagnosed in young women instead of endometriosis, because it’s easier to tell someone they don’t know what they’re talking about instead of treating the problem. Trust me when I say that I have wished to be better and wished to dance again more times than we’ve had hot dinners. I want nothing more than to have the body back that I had last year. I don’t think we will ever get that back now.

Please, please, before you post that “mindfulness is awesome??!?!!!!!!!!” stuff, think of what you’re saying to people who cannot practice it. Please stop touting mental therapies as a cure for actual, physical pain. Please stop telling chronic pain patients that their pain is their fault, and they have to accept that and stop talking about it or anything to do with it. Please spend that effort on looking for a cure for us. I’m done with being told there’s no money and no point and I have to live like this. There is a point. There is the money, but it’s being squandered on pamphlets blaming cancer victims for their cancer, or reminding people to stop hoarding medicine, or to stop threatening NHS staff (I’ve been threatened by NHS staff twice).

Please stop making chronic pain patients accept that pain that isn’t their fault will never go away, and we should learn to accept it. Search. For. Answers. Delegate more funds.

Please.

Chronic pain warriors out there, stay strong. This system loves you guys.