Appointment at the hospital…

Ok, just a quick content/trigger warning: I’m about to talk about body stuff again. We have an appointment with pelvic floor physiotherapy today and we are very frightened, so don’t read on if you’re also not doing well. X

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So, today we have a appointment with a pelvic floor physiotherapist. We are bricking it.

The doctor didn’t think that endometriosis was what’s wrong with us, but he also wasn’t prepared to give up on us. He kept saying that being in pain like we are is not normal. He referred us to the pelvic floor physiotherapist just to rule out that that’s not the problem. We all thought that pelvic floor issues weren’t our problem, doctor included, but he wants to have the experts rule it out. 

The Dutchman is coming with us, but even then, there’s that familiar horrible knot of anxiety writhing in our stomach.

I’m particularly terrified. I want to protect my system and keep them safe, but nineteen assures me she will help with that. The younger ones usually hide during interactions with the outside world, so it might be hard for them to see how much fear I’m feeling. If this doesn’t work, they’re going with hormones to stop my cycle. That’s horrible in itself as they basically induce early menopause. It’s reversible, but still… Hot flushes in this heat?! Gods.

Apparently there will be another internal exam today and that’s just the worst thing. I know we already managed one fairly well, but this is another and with very little warning. Last time was the same, though, so maybe that’s better? If I had known, I would have been stressing out a lot worse.

The hospital are working really hard. I just want answers for my long suffering team. 
27 x

Scan results.

Apparently, the MRI scan we had at the hospital showed an 8mm cyst with blood filling it. That may or may not be a problem, depending on what the reason for the cyst was. Sometimes that does happen, but the doctor also mentioned that endometriosis presents with chocolate cysts. 

We are exhausted. There was nothing else on the scan, but the hospital is busy trying to find an answer to my pain. They’re much less linear about things than the NHS was. They’re holding an endometriosis meeting on Monday, I think, and they will discuss my case and figure out where to go from here. I will be involved in decision making as well, they’re going to ring me and tell me what they want to do next.

I only remember receiving this level of care when I was a tiny child, in the UK. Since then, the NHS has been so stripped of funding that it doesn’t matter if you have cancer, you’re still put on a giant waiting list.

However… Not finding anything obvious on the MRI is just another blow to our confidence. We’re tired of getting no answers. We are very pleased to be living in the Netherlands, because none of this would be happening with the NHS. 

The Dutch healthcare system actually treats you like a person. When I (27) cried in an NHS appointment, they got exasperated and told me to calm down, there was nothing they could do, did I consider the pain being anxiety? Here, when I cried in yesterday’s appointment, the doctor understood that I was at the end of my rope and worn out from all the pain. Their attitude is completely different. 

The election results in the UK have upset us, too. A Tory/DUP coalition would force us to stay in the Netherlands. There would be no hope of going home because both parties are so anti-women, anti-gay, anti-europe that it would take many years for the UK to recover from the damage done by them. I am so not excited about Britain’s future.
We are holding on, but only just.
Love, 27 x

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

It’s been a very long time…

Well…

Time has absolutely flown by. We have moved to live in our own house with the Dutchman- it took a lot of work, but finally we live somewhere that we can call our own. We feel very safe in our new house. The Dutchman put a lock on our bedroom door, which has helped us feel calm and safe. We have control here, and it’s easy to let our guard down a bit and actually let the Dutchman take up some of the slack. He is very good at stopping us from overdoing it, pain wise. 

I can’t remember how much you guys know about our health, but we went to the colorectal specialist, who took one look at our symptoms and said we NEEDED a second gynaecological opinion. A GP from our old practice in the UK also said it was probably still endometriosis. Recently, 27 read an article about endometriosis which suggests that she’s been either lied to by the Doctor that performed her surgery, or that the Doctor was just not trained to look for endometriosis. Apparently, there are way more places that it can hide and if you’re not a specialist, you probably won’t know what to look for. Combine that with the fact that when we had our laparoscopy, the whole process literally took 20 minutes from being put under to waking up, plus the fact that there was a student in… Yeah. The picture ain’t pretty. 
27 finally has had the courage to admit that she needs help badly – our pain levels are pretty awful right now, and we have struggled to walk, nearly thrown up from the pain, had issues eating and sleeping because it’s been so bad, and finally, the last straw has been this week. I basically have had to watch her have absolutely no energy, be in a LOT of pain, struggle to bend down and fix her shoes because it hurts so much. We think she has another cyst. 

Our body hurts so much but she hurts more and we are all worried for her. Nineteen wrote most of this post, but I, 16, wrote the rest. We haven’t been around because we have been so busy, but we have also been caring for 27. She’s upset and hurting. If you guys who follow her have any advice for her, please drop us a comment. We have health insurance now, so hopefully we will get the care we need. 

We love you guys. Thank you for sticking around for the ride. Hopefully, the next bit of the journey will be less sad. 

Lots of love, sixteen and nineteen. X

(Have apology pups too!)


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