A little rant

There’s a huge vulnerability in being chronically ill. You spend an awful lot of time alone and all your energy goes into pretending to be ok in order to just get through the day. Your interactions with people are limited as there’s just no energy left in you to try and go out to socialise.
Despite this, I have managed to maintain some very good friendships with a handful of amazing people.

It would appear however, that my definition of friends is very different to those who I thought I was friends with. But that’s ok.
I first learnt this when I was in New Zealand, but they were people who started as work colleagues, so there wasn’t that bond of over 10 years that supposedly made them actually care due to years of history.
Now I’ve learnt that you need to be part of a group chat in order to be remembered as existing at all. Isn’t that cool!

Whilst I was off my face on morphine in hospital, on that terrible ward, I heard from so many people who I haven’t spoken to in years. People I’m not particularly close to but had worked with in the past or gone to school with etc, yet my close group of ‘friends’ were nowhere to be seen or heard of.
If a friend of mine was sick I would drop everything to spend some time with them or at least text and see if there was anything I could do, but that’s apparently where we differ.

I’m happy with my handful of truly good people I hold close to my heart and would do anything for them and know they would and have done the same in return.
I’m very lucky to have these people in my life and anyone else around is a bonus, but not something I am willing to waste any more energy in maintaining when its one way.

I’m excited to have this new lease of life finally and I’m not going to take it for granted

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One week later!

Holy moly I cannot tell you how good I feel. It’s like I’m a whole new person. All that pain is a distant memory. Haven’t so much as taken a paracetamol the past few days!

That doctor was a miracle worker. If anyone has gynae or adhesion problems I would highly recommend Dr Raghavan. She’s so neat too, look…

God knows what’s happened to my belly button now though. It’s been pulled in a few too many times I think.

Anyhoo, if you’re free next week let’s do something because I am so very, very bored now I’m better and can function as a human 🙂

Love you

X

Post Op Fun

The difference already is amazing. I no longer look that lovely greenish colour I go but doctors fail to see, like brown people can’t look sick or something.

The pain has mostly gone. It still feels a bit bruised and tight on my right side but nothing like it was before. I can sit in a chair without wanting to cry! Thats a pretty amazing feat. Driving was always one of the hardest parts of my day. Taking enough drugs to be comfortable yet safe behind the wheel was a tricky calculation and often one which required a hot water bottle giraffe.

Im pretty sure the giraffe didn’t do much but serve as a distraction but if it got me through the day, I was willing to go with it.

Yes I took a hot water bottle giraffe to hospital and walked around with it firmly clamped to my side whenever I walked from A&E to the main dept for the staff room. I couldnt have given a crap about the dodgy looks. Those people should have just been grateful I was still coming in at all. Lunchtimes were spent curled up in the most uncomfortable looking positions, mentally preparing to go back to help those who claimed to be in more pain than I.

I nearly lost it the day I was admitted as my patient was being a complete wuss and I was obviously hurting more than they were. Grr. Ungrateful unwashed.

Anyhoooooo. Im way better. If we ignore the hormonal implant hell and morphine stoppage.

I have hot flushes one second and then will be covered in goosebumps the next minute. Its so hard to know whats going on inside my poor confused body right now. After heavily relying on morphine for the past month or so, to suddenly not need it anymore has completely thrown it off wack. Id like to thank Netflix’s “Stranger Things” for making my fear of the dark worse too. That’s definitely helping with the insomnia- worrying about getting trapped in the Upside Down. Thanks guys!

But yes, as far as I can tell at this stage, the operation was a complete success and I feel amazing in comparison to the hell I had got used to existing in.

Even managed a couple of tiny trips out of the house. Nothing exciting but more than I could have mananged before.

Cant wait to get back to having a life beyond work and sleep again. Not that I wouldnt be greatful to be doing either of those two things right now.

Thanks again for everyone’s support and well wishes and everything you’ve done for me through this. Its been overwhelming. You all more than make up for the lack of interest my own father has in his childre. You’re good people

 

 

It’s done :)

Good evening.

Sorry this one has taken so long but the whole day has been a foggy haze and I’ve forgotten chunks of it already.

The day has flown by. Came in at 7.30am and was operated on at about 9.30am. I spent most the day in and out of sleep.

All went without a hitch as far as I’m aware. It was done keyhole and all my organs are in tact. As suspected there were a lot of adhesions. My bowel was stuck to my abdominal wall and my right ovary/fallopian tube was a big balled up mess of scar tissue.

My consultant sliced and diced her way through it as much as she could and as far as I can tell already, she’s done an amazing job. Im barely bloated  (less so than if I’d eaten noodles) and I’ve only taken paracetamol and 5ml oral morphine since the operation! Thats bloody amazing! Tomorrow will be the teller though.

Im staying in for the night, on a swish new private ward. I got lucky as theres no beds for me anywhere else apparently. That or all mums whinging last time I was in did the trick and won me an upgrade.

Check out my fancy dinner and mums coffee

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I have ensuite, air con, a duvet and a fancy breakfast menu to choose from. Praise the lord for the freeview tv as the wifi is down and therefore I cant use netflix on my laptop.

I feel amazing. Which is a bold statement and something I may swiftly retract tomorrow, but I really do. Dont get me wrong,  Im still in pain. I have a pounding headache. My incision sites are a bit sore and my I can feel the air pushing up under my diaphragm but I feel soooo much better than I did before going into the op.

I have a week to get over this one before some other gynae doctors poke around at my insides. Yay me. Havent really mentioned this bit but the other week when I was in hospital my GP informed me my recent smear test came back abnormal. Im sure it’ll all be fine. Theyre doing a biospy next Thurs and if there’s anything dodgy they just burn away those cells. Simples.

Fingers crossed after that I can get my life back. I miss working and I need to be fighting fit for my trip to NZ in Sept.

 

Sorry to those wanting funny stories about my neighbours, but I dont have any. Plus everyone that has looked after me today has been really really nice. I’ll keep my eyes peeled for something tomorrow xx

 

Final thoughts before the big op

Tomorrow’s the day!

Tomorrow a couple of surgeons are going to slice me open and have a look inside to see if they can see anything abnormal. They’ll investigate this “mass” they’re avoiding talking to me about (I’m really hoping for a teratoma. Hair, teeth, the works!) and possibly cut up all the cobweb-like scar tissue sticking all my organs together.

Am I worried? Yes. But I’m scared of it not working or the other extreme happening and leaving my mum behind, alone. All the bits in between I’m ok with. I’ve thought about all the possibilities.

*I could lose the right ovary and fallopian tube- I’ve already been told the whole kids thing may not be in my future and that side is the evil side anyway.
Plus I’d happily never have sex again to be honest and I’ve already started looking into the adoption process as a single mother 🙂
I’ve made peace with the possibility of not carrying my own children so if I lost the whole reproductive system I don’t think it would affect me much anymore.

*I could end up with a stoma bag -Already named it Ren and Stumpy! I can wear the smallest bikini ever and not feel self conscious about my fat bits as everyone will be looking at my bag!

*I could get another infection and end up spending weeks in hospital-Not ideal but I already cant work because I’m on so much morphine and therefore cant drive. I’d just be bored in hospital instead of at home. Plus I got more visitors in hospital than I have had at home!

Any of these options are preferable to the operation not working. To them going in, not finding anything abnormal and then me spending the rest of life with this unknown cause of crippling pain.
That’s the thing that scares me most.
Before I was admitted, before it got so bad. Heck, before I even did that 50km trek my doctor advised me not to do, I was looking into going to Sweden to Dignitas for assisted suicide.
This is my last hope and I am terrified it will not work. I’m out of options and most doctors but my GP gave up on me a long time ago.
I want my life back. Or at least some form of a life where I can at least leave the house alone without fear of collapsing or crying because the pain is too much and I cant lay down.

Keep your fingers crossed and I’ll keep you updated tomorrow when I meet the new people I get to spend 24hrs a day with until I’m unleashed from the hospitals grasps.

X

Have you any idea how lonely it is to be sick?

Have you ever thought about what it’s like to be a patient in hospital. Not the being sick part but what it does to a person mentally?

To have your interactions with non staff members or other patients be completely dependent on whether somebody else deems you important enough to visit that day.
To feel like you just stop existing because you’re trapped in a hospital through no fault of your own.
Its like a little prison. But way less interesting than OITNB.

I was in so much pain and so unsteady on my feet that some days I was unable to simply walk to the bathroom on my own.
I couldn’t shower without sitting on a shower chair or having someone else to help carry my stuff to and from the bathroom
The days I was attached to a drip stand were the steadiest days.

I currently can’t go a day without two different types of morphine and a bunch of other drugs, just to make life bearable.

I don’t think people see me as someone who is particularly weak or vulnerable but after 3 years this shit has worn me down, physically and mentally.
Im sad and I’m lonely and I feel like some of my friends don’t actually care. Which is a crap feeling but something I already went through in NZ and quickly learnt who I could lean on. (I could write whole books on Kristina but that’s not for now)

No matter what state I’m in, a simple text to let me know you haven’t completely forgotten my existence makes my day. Just to know that actually people do care about me in a way that’s not just for show publically on facebook, but genuine.
Those who have visited or messaged, or sent someone over to check on me on their behalf mean the world to me. I may not have been in the best state or able to hold a real conversation but know this, it made my day. Truely.

Being poked and prodded daily for those last two weeks was the least amount of fun I’ve had in a long time. Having to repeat my story to every new healthcare professional that came to look down on me in my bed was exhausting.
Some had pity in their eyes but most seem uninterested. “If you’ve managed for so long, why should we bother doing anything now? You’re not exactly writhing around the bed in pain!”

Im so very, very tired of it all now. All the pain is exhausting and no I’m not someone who is going to ham it up and make a load of noise about being in pain. I’ll quietly suffer until I can’t take it anymore or whoever is with me decides that enough is enough and they force me to see someone about it.
I’d been doing so well at pretending to be ok for weeks. Bloody Martina making someone in A&E check me out and trapping me in hospital for 2 weeks.
Most if not all of my hospital admissions have been the result of someone else deciding I was in too much pain to cope alone. Many of the admissions have been whilst I’ve been on duty, proving I’m a tough nut and really good at hiding how much I’m hurting.
It’s a big fat lie and I’m not as strong as I pretend to be.
Please remember that.

How did we get here?

Here’s a quick background in case you’ve missed the last 3 years…

In November 2012 I moved to New Zealand on my own.

In March 2013 I had a 6cm hemorrhagic cyst inside my right ovary, which they drained.
At first they sent me home telling me to get my gallbladder scanned via a GP appointment. I had that checked out by a colleague, all was fine. A&E sent me for a CT scan to check my kidneys this time and low and behold it was my ovary so I finally got an ultrasound of the right place and a diagnosis of my problem.

In July 2013 I had my appendix removed.
There was nothing wrong with my appendix. It was just the same pain I had before and my ultrasound proved useless in finding anything wrong with me.
I struggled with the pain from the moment they let me out of hospital, after they “fixed” me.
I tried everything I could to fix it myself, thinking I was just constipated but nooope. I had a massive infection between my uterus and my rectum, so was incredibly uncomfortable.
Another trip to CT followed and they kept me captive for 3 weeks whilst the antibiotic combinations failed at making the infection decrease.
Then one day, it spontaneously started draining and I started feeling more human.

Only after Id been let out of hospital did they do an MRI to see if there was a fistula. By then the draining had stopped and it showed nothing but the damage to my fallopian tubes from the infection.

I was told to start a fund for IVF if I wanted to have children.

For the rest of my time I was in New Zealand I got this random right sided pain every now and then and spent weeks upon weeks in hospital just for the pain relief. They were unable to find a cause on any imaging modality and settled with the decision that “some people just have pain” and told me not to drive myself mad looking for a cause.

I wasn’t ready to give up that easily so I tried alternative options. I saw a weird healer guy with crystals and stuff. I had food allergy testing, I cut out sugar from my diet, I started the low FODMAP diet, I exercised, I tried chiropractors, I had counselling and the doctors put me on antidepressants because when the flare ups were bad I could literally do nothing by lay down.

I thought I found a connection with food, but that theory no longer stands. Those are completely different pains and symptoms to contend with.
Yay lucky me.

Eventually I had enough and moved back to be closer to family and friends. Going through this on my own for 2 years was all I could stand. I needed more support.

I managed almost a whole year pain free until June 2015, when I got sick again.
My original thought that sex put me in hospital was proved true and thanks to my then boyfriend I ended up pretty ill again.
However, that theory doesn’t completely stand up either as I avoided it for a whole year and now look where I’ve ended up!