Be a bit more thoughtful 

Someone told me I looked miserable the other day. 

That was incredibly thoughtful of them.

I’ve been in pain for 8 weeks and am facing a lifetime of more of the same.
It’s safe to say that that thought wouldn’t make anyone want to jump for joy.

Im trying. I’m trying so fucking hard to not let it ruin my life and be the fake happy person you want me to be all the time. But I can’t do that and I won’t do that just to please you.

I struggle through for my patients and my own sanity and I’m not in the least bit sorry if you’re not comfortable with that.
I have to get through this any way that I can and without a doubt I’m going to have days where I don’t want to pretend to be happy or that I’m coping in the slightest.

This hand I’ve been dealt it shitty and I have to deal with it in my own way.
If you’ve seen me at work you’ve seen the good days.
You’ve not seen the days I have to hold onto the walls to move. The days I can barely stand. The days I can only open one eye at a time in order to focus. The days I spend lying with my face in a vomit bowl.

You have no right to make me feel worse than I already do.

On a better note. My comfort blanket is coming home in a few months. I could write a whole post on how ace I think he is and all the lovely ways he’s made me feel better when I’ve not been well, but I don’t think he’d like that. So I won’t. But he knows how much I appreciate him and that’s all that matters.

 

I know the original comment wasn’t meant to make me feel worse but it did. So just be a bit more considerate when you say things

Yet another test 

I barely slept last night. I was up late chatting to a fellow sick kid who has been newly initiated into the club. 

Its kinda nice having someone know how shit it is to be in limbo, but at the same time i wouldn’t wish it on anyone. 

I managed maybe a few hours but for the most part it was just little 10-20 minute doses. 

In my sleep deprived haze I looked up private ultrasound scans because I can’t stop thinking about how much that prodding hurt. If pushing on something causes pain, we should probably find out what that was and why. 

I emailed someone before the clinic was even open and got a phone call half an hour later. They had a slot at 11am and if I could get to Sutton Coldfield in time, the consultant could scan me.

So I did.

It hurt, as expected and much like every other test I’ve had done, it was all normal. I paid another chunk of money to once again get no further!

I really am starting to feel insane. 

How can there be nothing? The probe was pushing against my uterus and right ovary and it hurt like hell, yet the scan was normal. 

Where do I go from here? What hope is there now that absolutely no imaging shows anything abnormal?

I don’t know what else I can even do now

Now what?

I’ve avoided writing this post for days. 

I don’t know what to say. 

I’ve stopped crying for now at least. 

The appointment on Wednesday was long and intense. I had to recite my medical history for the billionth time, which is hard enough to go through alone but then he asked me about kids and if I wanted them. I hate that question. I hate having to think about my fertility at all. I’d rather ignore it until it’s an active issue in my life. 

Then he examined me. 

I forgot how much that internal lark hurts. The pain took me by suprise and I instantly cried and from there on out the tears didn’t stop for at least half an hour.

He thoroughly went through what he thought may be wrong and the ways it could be treated. Then he dropped a bombshell. 

He’s retiring in the next few months!

That glimmer of hope I once had, had just been squashed. 

He offered to do the surgery but only after a diagnostic op which would cost the £4k. However, he wouldn’t do anything to help during that op. Should I then decided to proceed with the “total radical peritoneal excision” it would cost £25k! 

My heart broke. 

Something I thought could be easily fixed for what I thought was a lot of money was now going to be a 10hr op and cost more money than I could ever get together. Plus there would be no real follow up. 

I was back to square one. 

I cried at my GP yesterday morning. He looked at me with that sad face I’ve seen before. The one that the consultants in NZ had when I wasn’t getting better. The face that says I’m sorry but I don’t know what to do anymore. I hate that face. Doctors are supposed to know how to fix you. They’re meant to have the answers 😔

Forgive me if I don’t want to talk about this to you but as you can imagine, I’m gutted. I paid £350 for almost an hour of false hope.

I don’t know where to go from here. 

The nurses at the spire clinic took me and my motuer to one side, seperstely and spoke about another doctor who they highly recommended and also still works for the NHS. So I could maybe get in through choose and book to see him, but again up north. 

I knew something like this would happen. This was the reason I didn’t want the GoFundMe page set up before I had seen anyone. I’m so pessimistic about my health because I’m used to stuff like this. I’m used to there almost being hope and then it being snatched away. 

I’m not sure what I’m supposed to do with the money you’ve all been so kind to donate at this point. I feel like I should give it all back. 

I feel so lost right now

Sad face 

Despite people’s best efforts with cheering me up, excluding a doctor telling me off for walking funny and not standing up straight  (obviously due to my abdo pain), I have remained miserable. 

Yesterday’s post mortem cases were quite sad and one freaked me out a little as she pretty much had the same body as me, minus tattoos. Imagine seeing yourself dead. That’s what it felt like. Really creepy. 

I’m also panicky about tomorrow’s consultation. He’ll either say yes, I’m a good candidate for surgery and I’ll have the stress of that and finding the money for it. Or he will say no and I’ll spiral into a horrific depression. 

I’m running out of options. I’ve covered all bases. 

I don’t want to spend my life on hard-core pain killers. I have no idea the damage it’s doing to my liver/stomach/kidneys etc. I could be causing further damage and it won’t be detected til too late because nobody is monitoring the amount of drugs I’m taking at all.

I also do not like the prospect of being in pain for the next 30+ years, so the risk of an op feels worth it to me. 

I was fortunate enough to be able to enjoy my aunt’s wedding at the weekend in a relatively oain free manner, but my handbag was jam packed full of pain killers, antinausea, buscopan and my TENS machine “just in case”.

I want to be able to say yes to invites to do things. Little things like going out for dinner or meeting up with friends, without the fear of it making me feel even worse. 

I’ve made it to the big things. The weddings, the baby showers etc but I’m missing out on life. 

It’s 7pm and I’m in bed ffs. I’m 30 years old not 3.

I don’t know how much longer I can fake this being strong thing. I’m not strong. I’m just stubborn 

Brace yourself. This may be a long one

I needed to write something about the go fund me page and maybe do a recap of my struggle with this fun mystery pain for those who have come late to the party. 

To be honest, it took me by surprise. Meghan did say she was going to do it but I figured she’d forget and/or have something better to do with her time. 

I’m slightly uncomfortable with it but appreciate the gesture and am overwhelmed with the fact that even on day one people were willing to donate.

I’ve made no secret of being less than great with money. I was stupid in my early twenties but have great memories to show for it. Then 2013 came around and it all got a bit harder. 

I moved to New Zealand at the end of 2012, on my own, like a crazy person.

I wanted to better my life and my career and pay off the debt I created whilst travelling. 

It started off well but then in March the following year I got really sick. I thought at first it was a hangover. But it didn’t get better. The pain was intense and throbbing and I couldn’t stop being sick. After a boat load of radiation I didn’t need, they eventually found a 6cm cyst in my right ovary. 

Here starts my many many stays in hospital. 

As a Radiographer in New Zealand we only had 10 paid sick days. So that was them all gone. 

June rolled around and the same pain was back. Long story short, the op got complicated, I had a terrible infection behind my uterus and I woke up one morning to find 4 or 5 consultants staring at me, with worried looks on their faces.

“We just don’t know why you’re not getting better” 

I didn’t understand. I was fine. I kept telling them I was fine. I could still make it to the bathroom and that was my measure of being ok.

I ignored the bit where I was unable to stand/sit/lay down or keep any food down. I was fine. I could pee without assistance. 

I was later informed my bloods were intensive care level deranged but like I kept telling them, I was fine. 

I had to be fine. 

I was alone in a country on the opposite side of the world to everyone I knew and loved and my sick pay had all been used up during that first stint. These 3 weeks and the recovery time out of hospital were getting me further into debt. 

After that stay I was in hospital almost every other month, when the pain would flare up (usually at work) and someone would force me to see a doctor who would generally send me into hospital to get the pain under control.

Eventually I couldn’t deal with it anymore and created more debt by coming back home where I could be closer to family and have someone look after me if needed. (Don’t get me wrong, I had some really good people in NZ and I can’t thank them enough, but its not the same as your mummy)

I had a few good months upon returning in 2015 but then it went downhill rapidly again. Further hospital trips. This time in Worcester, where I had moved for work. Closer than NZ but still far away.

This meant more time off work for sick (as well as being signed off for stress thanks to a horrible working environment) which, you’ve guessed it- helped me create more debt!

I moved back to my mum’s later in the year and was ok again for a bit. The pain was manageable. My GP was amazing and tried all she could to get to the bottom of it, sending me for all sorts of tests but nothing ever came back positive. 

I got admitted to hospital on shift in June 2016 because my colleague had enough of me vomiting between patients and made a nurse check my stats and that was where I stayed for 3 weeks. 

They couldn’t find a cause of the pain and nobody wanted to do anything to help. They just dosed me up and let me veg in my bed. I could only shower when mum visited because I couldn’t walk that far without help and I needed a stool to rest on when I did get there. 

Long story short, mum kicked up a fuss. They did exploratory surgery, found more adhesions than they expected, cut them up and then I was right as rain again as soon as I was awake!

Things stayed that way for a few months…then I went back to NZ and it all started to go wrong again. 

So since October 2016 I have been trying my best to the bottom of this pain and find a way to live with it.

Well that’s kind of a lie, I started the hunt whilst still living in NZ. I saw a kinesiologist who made me give up sugar. At that point I was also gluten/wheat free too so that was fun.

 I tried the low fodmap diet.

 I saw a chiropractor.

I exercised. 

I had counselling. 

I had physiotherapy. 

I’ve tried hormone treatments. The pill and zoladex. 

I’m fast running out of options.

I’ve managed to become completely debt free despite all my time off sick (for the past 18 months I’ve been a locum. No work = no pay) but as you can imagine, I have very little savings. 

So this is kind of where the go fund me page comes in. 

I’ve found a private doctor at a Spire hospital in Yorkshire and naturally they don’t come cheap. The initial consultation is £350 and then if he thinks I’m a good candidate for the operation then that’s almost £4k. 

I assume my credit rating isn’t too great right now, so I’m not sure how much, if any, they will lend me for the op. 

I’m at a loss as to what to do but I’m getting so exhaustied from living with this pain. 

In the past 7 weeks I’ve had maybe 3 days at most where I haven’t been suffering. 

I have no social life. I work (because as we have established, I have to) and I sleep. I tire easily and I vomit often.

If and it’s a big IF, further adhesiolysis is the key then this doctor may be the one to fix me. 

The surgery I’ve been looking at is called Temporary Ovarian Suspension and there is a little YouTube vid for those who are interested here

I’m hoping it will fix me for a little while or at least he could point me in the right direction of someone or something that could help me gain some kind of normality back in my life.

So here is the link if you want to help me. I’m not usually one to ask people for help but I’m having to put my pride aside and rely more heavily on others lately. 

I just would like to live my life without being in constant pain. 

Thank you for reading x
 Go Fund Me Link

Ok for the most part 

Today I had the most brilliant time catching up with camp friends… and was severely punished for that joy. 

Started feeling a bit sick and dizzy around 5pm which didn’t go away with the cyclazine and was only made worse by boarding the train home. 

Thankfully the toilet was free for the journey because I spent a lot of time in there throwing up. It was not pleasant. 

Thankfully I have some pretty amazing friends who drove my car home for me so I didn’t get in any accidents. 

I’m too happy and tired to even feel too sorry for myself. 

If you’ve not experienced life of a summer camp then I don’t know if you can fully appreciate the brilliance of those friendships. 

I hadn’t seen these girls in almost a decade and it felt like I saw them just yesterday! 

The intense environment of living in each other’s pockets for 3 months seals a friendship that can last anything. 

We have Facebook to thank for helping us keep vaguely up to date with each other’s lives but nothing beats a good face to face catch up over a glass of wine. 

I’m going to leave this blog post here as I’m struggling to concentrate and I won’t do it justice. But just know, I am grateful for everyone’s understanding today and that for the most part I was able to enjoy the day as a normal 30yr old woman.