After the hospital today.

Guess who’s pelvic floor muscles are perfect?! (The physio literally said that!)

Guess who doesn’t have pelvic floor issues?

Sadly, guess who’s back on the diagnostic ladder?

Yes, it’s your favourite system. To be fair, the hospital apologised for the fairly long wait (next appointment is the 1st of August) and our physio was lovely. The internal exam we had also didn’t hurt at all! The physio said we should be very proud of such a huge accomplishment. She’s not wrong.

As always, the Dutchman was there to hold our hand and let us know where we were. 2017, safe with him, living in the Netherlands. 27 managed to surface and do the whole exam with the rest of us, which was good as she managed to stay present through the whole thing. We also managed to have a laugh with the physio and stay calm.
Sadly, after all that anxiety, 27 and our body has absolutely crashed. It’s your friendly neighborhood nineteen writing this for you guys to read. Please let me know if you spot 27 acting really depressed or suicidal, she’s been very ill with that recently and I have to make sure it’s not just sixteen who’s alone in protecting her. 

As for me? I hate seeing 27 so fragile. She fights for us all every day and doesn’t really get much in return. Her anxiety is literally through the roof a lot of the time, and I just want to see her safe. It’s funny, usually she does this for us all, but this time round, it’s me, helping her. She deserves the rest.

So, now that long wait. If anyone has tips for easing our pain (besides heat packs as some days we live with one of those attached to us), please drop us a line in the comments.
Love and spoons, nineteen. 

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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. 

Another May Day.

Today is the ninth of May. It won’t really matter too much to many people out there- just another ordinary Tuesday. The only reason it might matter at all is if, perhaps, you have an anniversary today. Maybe you got married today, a child was born, you got that incredible job or you met someone you knew was going to be a friend forever. Maybe you travelled on the holiday of a lifetime. Whatever it was, I hope it was pleasant… Because, sadly, not all anniversaries are.
For many people who have been traumatised, specific dates and months are fraught with difficulty and upset. Ask anyone who was in London on 7/7, but not actively involved, where they were at the time of the attacks and they will, most likely, tell you where they were, what time it was, when they saw the news. It’s the same with any trauma, unless you happened to be the one suffering through it.

I’ve noticed that trauma survivors are able to tell you what happened to them, but sometimes they are super hazy on exactly when it was. Others can give you a clinical description of exactly what date and time it was when their trauma happened, but have little to no idea what happened. I’ve also noticed that victims of repeated trauma are super confused about timelines, which is even more impaired when you realise that a lot of repeat trauma survivors tend to have an identity disorder, an anxiety disorder, PTSD or some hellish combination of all three. These disorders play havoc with your internal clock and quite often, you have no hope of figuring out what’s going on.

My observations have told me that those who have had repeated trauma happen to them can’t frame timelines well, whereas people who have had a single trauma happen to them mostly can tell you exact details about what time, date and place they were at or in when it happened. Of course, there are exceptions, but psychological studies tend to theorise that having a single trauma usually timestamps itself on someone’s brain. Repeat trauma generally impairs this ability.
I am a combination of both.
The younger alters in my system kept my secrets for years, not telling me when bad things had happened because they were trying to protect me. Timelines have been hazily bashed out as we have learned to communicate as a system, so we all roughly know how old we were and what happened when. Sometimes we still get confused. However, weirdly enough, exact traumas still have dates attached to them… Dates like the 10th September and the 9th May.

We broke our back on the 10th September, and the ninth of May marks a whole year of suffering from chronic pain. 

It’s true we have been in pain in some way for most of our lives, but this affected me really badly. I think it’s cause I fronted whilst the trauma was happening. Being told countless times that I was imagining my pain was soul-destroying, especially after having fought so hard for my health in various other ways. I wanted to protect my system against what was happening, especially 19, because she’s fought so hard for us before. I wanted to spare the younger ones the trauma. Sadly, I traumatised myself instead.

I am seeing the doctor here tomorrow, and there’s so many things writhing around in my head I just don’t know how to begin to list them. What happens if I’m dismissed without any real answers again? What happens if even the Dutchman can’t get them to see reason? I have faith that he will do his absolute best to help us, but I worry that it’s not going to be quite enough. 

The Dutchman tells me that actually, in the Netherlands, things happen far quicker than they do in the UK. There’s much less waiting and more time spent being treated, people in the profession are less likely to be condescending, and things are overall much less stressful. I want to trust that he’s right. I know he would never mislead any of us or lead us astray. I just want his experience to be because he lives here and not just because he’s a man.

Wish us luck. This is a horrible anniversary today, and we want to make it through as unscathed as possible, especially me. 
Love, 27 x

So basically…

Today we are all exhausted. We hurt really badly as well and we suspect we will need to sleep soon, despite having woken up at eight.

This is not fun. We at least are pleased that we have a medical appointment soon, but we are also scared of it. What if we get told the same stuff as before? 

Fingers crossed that it will be ok.

In the meantime, there’s wedding prep to be getting on with. It’s been a bit of a struggle to do things from the Netherlands, but worth it just the same.

The cats we seem to have made friends with don’t want to leave my side. I love it. I miss my puppy but I know that the cats are looking after me in their own quiet way. I keep trying to befriend a cute little black kitten but he is shy, so we have been taking it super slow. He actually took food out of my hand the other day! Progress.

All in all, our days consist just trying to keep us all afloat at the moment. We are trying hard to keep fourteen and fifteen sane, because it’s May, and we are also working on keeping 27 grounded. She’s frightened of the medical stuff. Hopefully nineteen and I can kick butt when we go to the appointment next Wednesday.

It’s weird to type to you guys. I feel like I know you through the others, but it’s strange to finally talk to you. Nice to meet you, anyway.

Love, sixteen x

Life update: All sorts of news.

Hi everyone!

Since my last few posts, life got incredibly busy. I had to stop posting and start using all my spare time to keep up.

So, pain wise- still in pain. We went to the stupid bowel clinic appointment and were told two things:

  1. This isn’t bowel related. The distended bowel was probably caused by starvation before the op, as it’s the most common cause of distended bowel without illness. If it had been a partial or complete blockage, I’d be feverish, vomiting and incredibly sick. He also said there was no way he would put me through all these horrible tests just to prove it wasn’t my bowel as I have virtually no bowel symptoms- everything is fine.
  2. He said that the hospital had maybe missed something and I needed a second gynaecological opinion, as this is clearly gynae related. I felt so vindicated (So did I, I went to the appointment for 26 and nearly fucking airpunched right in front of the guy when he said that! 19). He said that his hospital would be better for gynae and that they would take more time over diagnosing and assessing us.

So basically we left that appointment and decided that we weren’t going back to the doctor’s again because frankly, we had had enough. No more bullshit referrals that take six months to go through, no more cranky consultants who insist that we are perfectly healthy and nothing is wrong. No way. We had an alternative plan.

 

Co-inciding with our visit to the doctor was another challenge- the dance school show. We hurt every day and spent most evenings sitting flat out on the couch or pulling ourselves up to bed. We have crawled up the stairs more times than we can count. We have had several horrendous periods and cried from the pain, but somehow managed to choreograph everything for the show, get it done on time and perform (craply, but still actually be on stage to dance) for three nights on a trot. After that we literally did as little as possible in classes. There was no way making it through adult ballet on Tuesday night was being prefaced by teaching flat out. We struggled through to the end of term and managed, somehow, to make it.

 

Another thing that has happened which we are still in happy shock over is the fact that our fiance, the Dutchman, signed the mortgage papers and bought the house. It’s been the wildest of rides! We all never dreamed that we would EVER own a house, ever, but this has been a dream of ours for as long as we can remember. Owning a house would have been a pipe dream with the tiny pittance we have been able to earn as a dancer and as a teacher, but the Dutchman has had solid, stable jobs for years and has been able to save. We now are the proud owners of the house his auntie and uncle owned, a house that the Dutchman’s father grew up in, and a house that had been in quite the state of disrepair. His parents have been an immense help. They have been working at the house day and night to fix it, the Dutchman has been working on it every spare moment he’s got, and then so have we… what, did we not mention the key fact here?! 😉

We have officially moved countries. We live in the Netherlands now!

The country we liked so much when we visited at eighteen is now our home. This is, bear in mind, the first country in the world to legalise gay marriage, a country with progressive attitudes and friendly residents. A country whose environment and scenery brings us peace and happiness, and the language- lord, what a challenge, but so worth it! The younger ones (14, 15, 16 in particular) are frigging ACING it. I’m so thrilled when I hear them start to speak Dutch and the Dutchman’s friends get what they’re saying! Not only this, but it looks like health care wise, they outrank the UK by miles. The Dutchman says that quite often, people come from other countries to the Netherlands and the doctors here are shocked that things have been missed- sometimes small things, but other times things that should have been obvious. Problem is, when you have a healthcare system that has been systematically drained of money and its problems blamed on patients, things will be missed as there’s no time to look properly. We are ready to go back and try and get ourselves fixed properly. The Dutchman has promised to help as much as he can.

 

Alongside this is another huge milestone: we have finally finished seeing Dr K. Gods do we all miss her. So so much. I think she’s not aware of how much importance we have all placed on some of her teachings, but we do know that she is aware that she’s saved our life a couple of times since we started to see her. Nineteen became really upset that we had to leave, as she feels like she’s been horrible to her (when she was a voice) for longer than she’s been nice to her, but Dr K has reassured us all that she thinks we are brave, strong and good. She’s really pleased with our recovery, so much so that we now don’t really come under the DID category officially- well, more so the final D for disorder. We are a dissociative identity, but we function as a team. We are solid as a rock that way. As an example, we recently had a family member de-friend us on social media because apparently, they didn’t like what we posted, calling it “generalisations” and “opinions”. We went into meltdown for a day- but, actually, are now doing really well. We even managed to bounce back the next day fairly well, functioning enough to work on the revision and documentation for our massage course.

 

That’s another thing that’s happening- we are THIS CLOSE to beasting the final exam from our massage course. We are so excited! We have less than a week now, but we will be fine, we suspect- we feel quite ready. We have spent a lot of time updating client records and sorting out requisite information, revising anatomy and physiology, health and safety, and a ton of other stuff. It’s been a challenge and we have spent a lot of time in bed due to also trying to fix the house, but we are slowly getting there.

 

It’s been a challenging journey, this past couple of months. There have been a lot of incidences where we have wanted to throw the towel in, but there have been other wonderful things that have made up for it. Watching my sister find a new boyfriend who absolutely treasures her has been so beautiful- they give off the same vibes that the Dutchman and I did when we first got together, it’s the best!- and seeing her so happy; having the Dutchman stay over for his two week holiday, going reverse trick-or treating (we might explain how that works in another post!); having hilarious moments with my sis, the Dutchman and my sister’s new boyfriend… it’s been lovely. Add to that the fact that my sis and the Dutchman are so good as brother and sister, it’s melted all of our hearts! She burst into tears on Christmas morning when she gave us new wall art that she’d made, so we could hang it in our new home, and we cuddled her until she felt better. It was a bit of a bittersweet Christmas as we left on Boxing Day (Tweede Kerstdag for you langophiles!) but she loved having us around and all of us got on really well- her new boyfriend is Latvian, and brought a ton of lovely, delicious Latvian goodies over for Christmas! We had a lot of fun times all together, playing Speak Out (which had everyone in hysterics), eating the lovely Latvian food that sister’s boyfriend (let’s call him V) had made and brought. The family had a lot of innocent fun this Christmas, and lots of lovely presents were bought for the Dutchman and I for our house: we were bought curtains, had a clock made for us, wall art made for us, a cool Harry Potter themed doormat and amazing new kitchen knives! We have been so lucky and so grateful.

 

We are all learning, too, to work as a whole more often. We seem to be able to split still, and we are all able to come out and be called out by the Dutchman, but quite often we work as a whole. We are more likely to split if someone throws a trigger at us, but sometimes we come out individually just to say hello to someone we love- the Dutchman knows each of us by our quirks and the voices we have. The lovely thing about being with him every evening and every morning is that when something hard happens, he’s there helping us at every turn. We had a bad trauma anniversary recently, and nineteen was particularly unhappy as it happened to her, and he cuddled her til she felt much better. He never stops being amazing. We have played Mario Kart with him, laughed at stupid Youtube videos together, worked in the attic squished close and have been to watch New Year fireworks with him and his awesome crazy friends. This new life we have here has been so amazing so far, even though we have not been here so long and we are still in a lot of pain. The best thing about being here is that we know, at the end of the day, he comes home to us and we all get to wrap him close, feel his beard against our cheek, and kiss him.

Chronic illness: Tiredness edition.

Hey all, it’s 19. I am tired.

I didn’t used to be tired. We were a bundle of energy back in May, happy to chase small children around, work out at the gym and throw ourselves into anything physical. Now, we struggle to get to midday without a nap.

 

That’s literally what I’ve just had us all do. I’m exhausted beyond mere sleepiness, so a nap has been had. Sadly, I am STILL tired, and more than a little upset by how much I am tired. I’m helping 26 battle constant pain, exhaustion and depression and I quite honestly have no idea why we are all so so exhausted. We are sleeping at night, and we are actually eating.

We are having to teach tonight and we really just need a break. Sadly, we can’t have one.

What do you guys out there do to escape the tiredness that is in your lives? We used to exercise but now we can’t, se we need advice.

 

Thanks for your support through this awful health rollercoaster. I’m agreeing with that Dr the other day- it’s probably Endo, and they probably saw the distended bowel first (maybe that’s got Endo on it) and though that was it. Sorry folks, it ain’t. The first doctor we saw back at the hospital has a suspicion that the cyst (the mammoth one) was an endometrioma. I mean, Jesus, we’re a fucking classic case. The Dr the other day on the phone to 26 says that she used to work with the doc who signed us up for the laparoscopy, and basically said that you don’t need to see the nodules for it to be endometriosis. We have an appointment booked with her to discuss our options.

 

The Dutchman is of the same opinion we are- get rushed off to hospital when we arrive in the Netherlands, and then we will see what they have to say in their wisdom. I’m not giving up yet.

 

Stay cool everyone, 19 x

News- this could still be endometriosis.

Hi all, 26 speaking.

Huge news- spoke to a doctor about my pain. She immediately thought it was Endo, even after the laparoscopy result, and has prescribed me new meds and wants to talk about treatment options at my next appointment. I’m crying in relief. I don’t think this is bowel pain, I never have. I bet they didn’t find Endo nodules when they operated cause they were in there for 30 mins.

Please gods let me have answers soon.

26 x

 

(PS- looks like the Dutchman and I may have a house! He’s signing mortgage papers tonight!)