TW: No help from anyone

Just a word of advice- don’t get sick in the UK. Just don’t. I am not allowed a second opinion of the golf-ball sized cyst on my ovary, I’ve been told to go to the GP if it gets worse or stays the same. The GP today then told me that I should go back to hospital with the cyst and parroted the same thing as everyone else- apparently this will go on its own.

I can’t fucking work! All of us are in horrible pain. We used a wheelchair to get around last week. We can barely walk unless we use a cane. We are feeling sick a lot, we don’t want to eat, we are tired after a tiny bit of exercise…

But no, apparently we are just a set of ovaries and might want kids some day, so there will be no surgery to remove something that is fucking up our life RIGHT NOW.

Don’t get sick in the UK, just don’t.

TW: Hospital.

Hi all- massive TW for this post. We discuss hospitals and various traumatic things that happened there. Shout out to the nurses, who were wonderful in every way.

Monday the 9th May. We are in the gym, feeling happier than we have done for a long time. I’m on the leg curl machine, and pull myself up higher on the machine- there’s a sharp pain on the right hand side of my lower abdomen, and suddenly a gush of blood. We freeze. What. The. Fuck.

The pain is too bad to do another set. We are upset as we climb off it, and head for the chest fly machine instead. We do a couple of sets before the pain gets even worse, and then realise we aren’t well enough to keep going. We finish up, go home, and try to deal with the pain. We go and teach, too.

Tuesday 10th May. The bleeding and pain is worse. We feel awful, and triggered, and the younger ones have realised that we are not on our period. What the hell is happening, they want to know? I explain to them that it’s the ovarian cysts that caused us so much pain last August, and they are still scared but get it. Nineteen is feeling upset and unable to eat. We still go teaching, in awful pain, but we feel like it might just go away by itself… We hope.

Wednesday and Thursday, 11th and 12th May. The pain is pretty much unbearable. 19 has her flip out and we are all exhausted, in pain, wrung out and needing rest.

Friday 13th May. It gets so bad, we call the NHS non-emergency number. They are concerned by our symptoms and try and get an ambulance out, but we end up going to hospital driven by our Mum. We’re all scared at this point. The Dutchman arrives, and we spend the whole time after mum has to leave in his arms. Sadly, we are discharged with painkillers and sent home to book another ultrasound scan.

Saturday and Sunday, 14th and 15th May. We exist in a haze of pain. Making breakfast on Saturday, we pass out and the Dutchman carries us to the sofa. He continues to care for us in every way over the weekend, taking our minds off the horror that’s going on in our own body.

Monday 16th May. We end up at the GPs, and she’s so concerned that she sends us to the hospital. We have to go through an internal exam. It’s one of the worst things we have ever experienced. The Dutchman kneels beside our head, squeezing our hands and telling us it’s ok, we are safe. It hurts. He tells us he’s still there and he loves us, and he isn’t going to go away. We are admitted and they arrange an ultrasound scan for the next day. The Dutchman has to leave, but he Skypes us when he gets home to make sure we are ok.

Tuesday 17th May. The ultrasound shows a golf-ball-sized cyst on our right ovary, just like we predicted there would be. We knew there was a cyst. We have all been feeling unable to eat, and the pain is on the one side. However, we have a sinking feeling about this. Although there’s no cancer detected, we suspect that it is probably not going to make the doctors do anything. Later on, we try to get out of bed because we think we’re going to throw up, and pass out entirely. When we come to, there’s a concerned team of people present and a doctor there, and a drip and cannula in one hand. The younger ones hate that. It hurt for them to get it in because our hands are so bony. Nobody knows what to do about the cyst, nobody has any information or advice for us. We are point blank told that there’s no way to prevent cysts and that it’s not being drained.
Wednesday 18th May. We realise the only way to get any advice is to ask for it. There’s an amazing nurse who eventually comes to talk to us and give us options to help prevent the cysts from coming back. We are released with a handful of painkillers again, and told not to worry, all women get cysts due to their monthly cycle and sometimes, some women’s hurt a bit. This is past that, though. There’s a golf ball sized cyst sitting inside us and refusing to budge. It’s been there over a week. We are all scared and hurt and upset, nineteen is fuming, we all are at our wits end.
Thursday 19th May. A week since nineteen had her meltdown. The cyst is still there. We are glad to be home, but the full horror of hospital has started to sink in and we’re terrified of what we remember. We all continually flash back to the internal exam. It was horrendous. For any person who hasn’t been through trauma, it would have just been embarrassing and uncomfortable, which is bad enough. For us, it was torture.
Friday 20th May, today. We are sent a letter informing us that due to the fact we had been in Accident and Emergency and were prescribed medicine, we are to be charged for this. £8.40, “as you would be if you had visited your GP.”
The callousness of this hurts us. We were in A and E because we were really ill, not swanning in complaining of a common cold. We don’t mind paying, but there was no expression of sadness for us having to be in A and E, and the letter is callous in its tone. Moreover, we are scheduled another scan and an appointment for something not mentioned in the letter in June. JUNE. That’s a long bloody time to be left in pain. There’s a little unconcerned light-hearted statement about having an internal scan, and the probe would be, “about the size of a tampon. I don’t care. None of us do. We are not having anything like that happen again. They saw the cyst on a normal ultrasound, that internal one is unnecessary and downright abusive.
We can’t handle this. We have been thoroughly retraumatised by the whole experience. The Dutchman has offered to ring them for us and find out why there are two dates on the letters, and to explain that there may be adverse reactions to demanding inappropriate scan techniques. The letter mentions the normal way of scanning first, which we are fine with. Why is there the need to be so flippant about the internal scan?

 

We’re all really struggling and upset still. On Sunday we are supposed to be flying out to see the Dutchman. We hope that it works out ok, if the cyst bursts in mid-air we will be in trouble.

 

The only thing that’s comforting us right now is the thought that in two days, we get to be with him again. There’s our dog curled up with us, and our family have been very supportive. We are just praying that the pain gets no worse.

TW: Pain and panic and hell in my own body.

Sorry I’ve been AWOL. I was doing really well.

I’ve been working at the dog kennels my auntie has recently bought, I’ve been busy with my best friend’s hen do, and living life and having fun. I feel like I’ve been doing so well and I’m so pleased that I have been managing so well.

I planned, in my therapist’s words, “a fairytale hen do,” and I enjoyed it so much. R’s face lit up in childish excitement, her eyes sparkling prettily and her smile glorious, as I unveiled each surprise. I’ve been her friend since we were eleven and I really wanted to show her bow much I care for her and respect her.

She had a brilliant time. We all did- me, my sister and her. My sister and I came home, we started unpacking, thinking about doing washing and sorting the house out for when my grandmother and uncle came to visit us the next day, and

WHAM.

I was suddenly crippled by pain. I curled up on my bed, gasping. It felt like the chestburster from Alien was clawing its way through my skin out of my womb. Pretty sure at this point it was a body memory, I pulled myself higher up the bed and willed it to go away.

It got worse.

My sister came in to ask my advice over something and was met with the sight of me unable to move, shaking and wide-eyed. She decided then and there we should phone the ambulance, but I didn’t want to. She decided on the emergency doctor instead.

Three hours later (yes, three hours of me being unable to move due to pain, screaming at times, crying and blacking out) the paramedics finally arrived. They were, as usual, amazing, and decided it was off to hospital with me. They got me into a chair in the ambulance and I told them what had been going on with my symptoms, and also managed to disclose what my ex did to me, and the miscarriage. The paramedic, a male one too, took me seriously, commended me on my bravery, and gave me gas and air to take so I would be ok and I would relax.

I got to A and E (ER for you American readers) and I was delivered to the Triage area and waited there. I was seen after about twenty minutes by a very grumpy nurse, who didn’t let me explain very much about why I was there, didn’t take my pain seriously and gave me a handful of painkillers to take.

The ordeal really began then. After two and a half hours of waiting, where I was denied more painkillers, not told whether or not I was allowed to eat or drink so I couldn’t… I finally saw a harassed male doctor who informed me I had pelvic pain which was, apparently, common in young women (bullshit, it really isn’t that common), and apparently it would go by itself. Here, take some painkillers, stop over-exaggerating, and go the fuck home.

I was sent home in pain.

I’m still in pain.

This whole experience has taught me something: In the UK, the NHS is fucked. We have doctors who won’t help because they have to tick boxes and avoid expense. We have a mental health service with too many psychiatrists and not enough psychologists. We have paramedics who should be paid what a consultant is paid, because I have quite frankly not met many consultants who knew what they were doing.

In the meantime?

I am living each day exhausted, hurt, and upset. I am trying hard to reassure fourteen-year-old me and fifteen-year-old me that we are ok and we won’t die. I have to ring up tomorrow and talk to the people who may have to do, along with a normal ultrasound scan, a trans-vaginal one, and explain why the appointment may take longer than they expect. I am left picking up the pieces of a broken system which does not, on the whole and excluding a few professionals working within, care at all about me or why I am in pain.

Endometriosis has been mentioned, and I am wondering whether the person who gave me her opinion could ne right.

I am anxious, upset, frightened and craving to have J’s hand in mine this Sunday. I’m praying it will all go well, and I will have a solution to the problem soon.

I’ve lived in pain for so long- my back, before that horrific periods, now this. I can’t go on in pain all my life. I don’t have much left if I lose my body.

Still worrying, still wondering.

I’m going to go to therapy tomorrow and talk to Dr K about the last post I wrote. I still feel like there’s more to talk about with it. I think it’s still bothering me because I feel like the mania is clouding my real feelings. I want to cry but I can’t. I want to get upset and hide in a ball but I can’t, because I get distracted and suddenly I’m laughing for no reason and feeling cheerful, but it isn’t real cheerfulness. It’s some sort of bubbled effervescent fizz, tasty but short-lived, and there’s the speeded-up-ness and the irritation to contend with. I get worried when I’m like this because it’s dangerous. If something catastrophic was to happen I would be energetic and capable enough to do something drastic. I don’t want to not be happy, I just want to not be this frenetically speeded-up.

The thing that’s been bothering me today, apart from my mania and the thing I wrote about last time, is my scars. I know that compared to others, they are not big. I know that the ones on my legs and hips are pretty small compared to some. The problem is, the UK has been experiencing a lot of warm weather recently and I’ve been peeling off my customary, long-sleeved layers. I am seeing more of my scars, and I still can’t like or accept them. I know that J calls them my battle scars, that Dr K says that they’re not big or visible, and that scars are good things in some cultures. I want to believe that they are acceptable and that I am not this shredded mess. The scars on my hips actually disgust me still. I hate them.

J has never criticised my scars. He has never criticised anything about my body. He is always lovely and sweet about me, and he would never make me feel uncomfortable- so why am I making myself feel this way?

I’ll start again on the vitamin E oil again, and I am going to talk to Dr K about these feelings too. My mum might have hit the nail on the head- she said the reason I might feel so bad about my scars is because I have a lot of horrible memories that surface whenever I see them. The ones on my arm remind me of that time I wrote about here: https://battybeth108.wordpress.com/2013/06/26/bad-day/ That day, I wound up in A & E because of my self harm. The ones on my hips remind me of the early days of my depression, of the later days just before I met J, and the later days than that just before I went into hospital. The faint ones left on my calves remind me of being thirteen, fourteen, fifteen and sixteen. I hate the fact that each set of scars throws my mind back in time to when I was at my worst. I hate how they look and what they make me feel.

If anyone has any suggestions about how to help myself come to terms with what I’ve done to my skin, and maybe some help as to trying to reduce the appearance of my scars, it would be welcome. I feel so guilty and upset when I think of them- and then, worse still, I get distracted all over again and when I next think of them, I haven’t dealt with what I’m feeling so I go back into those feelings again.

Apologies if some of this makes no sense, but I’ve taken over an hour to write this because I’m just so distractible and my head is everywhere. This is what I hate about mania- can’t concentrate for five minutes solid.

Admitted- the beginning- Part Seven.

I said when I got out I would write up my journal entries. Here goes the first one.

April 24th, 17:31.

Voices are on at me still non-stop. Being admitted. The mental health nurse said that I was a concern. Dr K got me to come here because she was worried for me.

The RAID team got called (Rapid Response mental health team) and now I’m waiting for a bed.

The voices are so angry with me! They want me to die so much. I don’t want to kill myself but they keep wanting me to.

I really hope this fixes some of this or I might die.

April 25th, 00:59.

I have been admitted.

I’m absolutely exhausted. I want to sleep but my brain is on fire, so I’ll be writing until I feel a bit more tired.

I’ve been taken to A&E before, like I’ve written, but I’m not sure it’s ever been as stressful as this. I was in such a state with Dr K at my appointment, she taught me some breathing techniques with a relaxation technique, then she rang the RAID team to let them know I was heading across. She talked to mum, too, and we got to A&E (ER for my American readers). The lovely Triage nurse saw me and told me that they would keep me safe. That was nice. Right then, I felt anything but.

The good part about being assessed was that I didn’t have to keep saying all the bad stuff in front of my mum. I felt believed, respected and valued.

I’m in Ward 3- have my own room with a little ensuite toilet. Not sure how I managed that but it helps with the paranoia. It’s a mixed ward but the men can’t come down here, so that’s a bit relief.

I saw the consultant- she was very kind. She has taken my blood and done a full mental health assessment on me.

I rang R and J. Both were awesome. Told Mr Robot about all of this too, and Harley Quinn and Y.

Oh, I think I actually feel tired now. I will end up writing more tomorrow.

Admitted part 5

So, lots to tell.

So far, I’ve met some fellow voice hearers, some other women who have had experiences like mine, seen what happens when someone has a flip out, and done gardening. Odd list of stuff I know.

I’ll explain.

So I was nervous and ran to my room the night I got there. I felt like there were eyes on me, staring at the new “inmate”, and the voices agreed. I locked myself in and slept fitfully.

The next day was strange. Some of the people in here don’t follow a logical chain of thought, but it is strangely refreshing and interesting to get used to. My friend Rocker (not his real name, I want my new friends to be safe) was one of the first on the scene to talk to me. He sometimes finishes a conversation with you that he has obviously started in his head, but I like that. I do it myself occasionally. He is kind and generous, bringing little treats into the ward like chilli breadsticks and Coke. He also brought in a bubble gun last night. He filled it with hand gel and it broke- we were all amused by that!

Next there’s Sunbeam. She is struggling with addiction and voices, but still managed to talk to me, sharing her dinner with me one day when she couldn’t finish it. From then on she and I have been friends. She is the salt of the earth, a good person throughout. She speaks slowly and moves slower, but she has been so kind to me and calls me babe. I find that endearing.

There’s Rita the coach driver. She has shared experiences with me so we both know where we stand. She has told me if ever I am feeling blue to go and find her. I had a nice afternoon watching ‘On the Buses’ with her, and an evening watching ‘Lewis’.

There’s also Foxglove. She and Sunbeam both picked up on me two evenings ago, pacing the ward at night because the voices wouldn’t let me go to sleep. She has asked me about my voices, and always seems to have time for me. We are relatively new friends but I’m hopeful we will keep adding to our friendship. She likes gardening and is usually able to give me a smile.

There’s Vincent Van Gogh. He is a truly lovely guy, until his voices make him threatening by making him yell, or lash out. Just this morning he was sitting next to me, talking about my voices with me, and telling me the bad dreams I had all night will pass. I feel awful because when I was triggered once, I couldn’t have him pat me on the shoulder to cheer me up- the good news is that when I apologised he was fine with it. He taught me about deep breathing and talked me down from my fright.
There’s a guy who I think I’m going to call Uncle. He reminds me a lot of someone’s trusted uncle, of course, and he always has time to sit with someone and tell them to believe in themself. I often feel a little better for chatting to him- he makes me feel less crazy because he is so calm. I have never seen him lose his temper.

All in all, these are the people I talk to the most. The nurses are all really fantastic. Pixie is in charge of activities, and Auntie let me in the first night I was admitted and fed me  cups of cordial to stop me dehydrating. There’s also Ma Ramotswe, who is young and sweet and she has two children she was telling me about. The head night shift nurse is Matron, (even though she isn’t, she just has a great no-nonsense manner about her that somehow reassures) and she helped me last night to sleep. I was pacing and pacing, the voices telling me I brought them on myself and I was making it all up for attention, and she saw my distress and brought me the wonder syrup that helps me sleep and dull the voices.

So far, I have seen most of my family. My sister brought me her favourite minion t-shirt, and painted a picture alongside me. My mum drew me a weird blobby awesome zentangle-type-thing, and I painted it in. My nana has been and so has my southern uncle and gran. The auntie who has been inpatient before is coming today.

This morning, Uncle and I saw a bluetit- he has hung out bird feeders to attract the local birds. The one we saw had a clump of grass in its little beak, and it flew to the basketball net and fluttered down the pole.

“See,” Uncle said, “aren’t they resilient? They make something out of nothing.”

“Yes,” I replied, “they are. It’s a lesson for us all.”