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

Reblog: World Mental Health Day

Reblog from an amazing blogger. The bit about coping really helped us today. 26 x

Mental Mummy

I was going to write a blog today anyway and then I realised it’s World Mental Health Day, so even more reason.

I apologise for any waffle, I never actually know what I’m going to write when I start these so it all just comes out in one big mess. Most the time it’s readable though, thankfully.

One of the biggest issues with mental health is, it’s rarely openly  talked about. It’s never brought up in general everyday chit chat either;

“Hi how are you doing?!”

“Well actually I’m really struggling, I have a mental illness and today I had a panic attack that made me feel like I was going to die and then I cried so much I threw up. How are you?”

It just doesn’t happen.

And even with those you are close with, it isn’t easy to talk about. Especially if they have never been through…

View original post 1,324 more words

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!)

TW!! 50 Shades of Fucked up: The truth of Christian Grey’s sociopathy

Well, hi all, 19 here. We have a tonne of bullshit going on in our lives atm, so we thought we would post this as a distraction.

I’ve said it before and will say again- Christian Grey is a sociopath. This video agrees with me. Check it out.

As far as I know, all the big cult leaders were sociopaths. Stay safe when you watch this video, a couple of scenes could be triggering. Also, the cinema sins ticker helped keep me anchored and laughing a little, just so I didn’t go back to where I was last night. Hugs to all, 19. X

Film Theory and Cinema Sins: 50 Shades of Grey Cult theory

Do you know what really grinds my gears!? TW: Religion

(With apologies to Family Guy for nicking the quote! Religion mentioned, be careful).

 

So I use Moodscope to help map my moods. Everyone in the system likes it because it helps us realise where we are with our moods and even gives suggestions for how to help lift them. That’s awesome. Sixteen wishes she had something like that when it was her, back when our body was 16, too. She feels like she might have been able to identify when she was heading for a crash and could have stopped it from being so bad.

Moodscope has a blog, which we get every day, straight to our inbox. They’re amazing. Sometimes, they make the difference between a bad day and a better one. The one problem is, they forget about trigger warnings!

This morning, one came through which we liked, but then BOOM. Religion gets mentioned- Christianity specifically. Cue scrolling frantically past the bible verses and feeling stupid, upset and slightly panicky.

Moodscope, I think, makes this mistake because quite a lot of people see religion as benign and helpful. It’s meant to be a guiding force, something to comfort and protect. Moodscope doesn’t know that religion has a damaging power above just making people feel a bit guilty for sinning.

In some cases, religion damages people so badly they will never be the same again. We know all about that and how one small thing written about Revelation can have us feeling frightened within seconds.

Our plea to Moodscope, and any other blog/info post, for that matter, is PLEASE put a trigger warning for religion. People like us will thank you.

Operation results

It’s not endometriosis, a twisted ovary or a chronic appendix. It’s a distended bowel.

I have to go back to the GP. I am also going to have to try and get them to hurry up.

I hurt. I hate to think what being stabbed would be like.

I am not allowed any more days off. I have this weekend to recover, then I’m back to work.

I have to pass my massage course, too, and I still can’t stand for any longer than fifteen minutes without severe pain.

On top of that, I have a show to help choreograph. Not only that, but I have to demonstrate too, because the kids won’t know what they’re doing otherwise.

I’m at crisis point. How am I meant to function?

Some causes for this condition van be PTSD, and eating the wrong foods. I’ve never been good with dairy so I guess I have to cut it out entirely.

What do I do now? I literally have to keep going, I don’t have a choice.

The others are all trying to help me, I’m at my wits’ end.

26 x