Don't give up

When I woke up on Thursday I still felt exhausted even though I had slept pretty well. I think it was like an emotional hangover from Wednesday.  

I decided that the best thing to do to cope with how I was feeling was to blog. So that's what I did for the next 3 hours. I needed to finish off the post detailing my barium tests and episodes; I wanted to do this so that my story was complete. I also wanted to write about Wednesdays ward round while it was still fresh in my mind but without all the high emotions I had felt on Wednesday clouding my judgement (and writing style!)

I spent hours writing, pouring my heart and soul (and tears) into the blog posts. I find that writing these posts is very cathartic and it also helps me to have something to go back to- to help me remember the details of a day or an event after they have passed. And of course you guys love reading them too!

While I was writing my sister text me and asked me if I had looked at Facebook. I hadn't because the Facebook app on my phone was playing up and not opening and I had no 3G signal to look at the website through the Internet. 

One of the ladies on the ward was going down to Costa to have a coffee and use their wifi and asked if I wanted to join them. To be honest, I didn't have the energy and felt so depressed I could barely speak but I thought it would probably do me good to get off the ward so went down with her. 

This lady is lovely and knew that I was feeling really low so didn't press me for conversation but instead we sat in companionable silence, each looking at out respective devices, tapping away on emails and blogs. 

Remembering what my sister had said about Facebook I tried to use the Costa wifi to get onto the site but for some reason the wifi would not work on my phone (bloody typical). I asked my friend if I could use her laptop when she had finished and she agreed, asking if I wanted company or would prefer to be alone. 

Wanting some alone time, my friend went back to the ward and I logged on to Facebook. Imagine my surprise when I saw a message from one of the school mums saying that she was changing her Facebook profile picture to support a friend (me) who was having a difficult time and had asked her friends to do the same to show me support and to tell me not to give up. This was the picture she put up. 

And as I scrolled through my timeline I could not believe it when I saw that so many people had responded to her request and this was basically what I saw...

There were loads more than this but this just gives you an idea. I continued to scroll down and down and realised that I was crying. Huge, fat tears dripped down my cheeks and my chest heaved. I was sitting in Costa sobbing my heart out, completely overwhelmed by the support I was visually seeing from so many people on Facebook. I could not believe what my friend had instigated and although people do tell me that they care and that they're here for me, to have such a demonstrable display was just what I needed to lift my spirits. 

I don't think I can explain how low I was that day. I literally struggled to speak, to move. I was on complete autopilot and I felt as though after hearing the Drs thoughts on my situation on Wednesday my body had shut down to prevent it from being hurt any more. 

Realising how many people were behind me, willing me on, there to pick me up, even if just in an online capacity and not a literal sense, gave me hope. People didn't think I was mad; nobody thought this was all in my head. I couldn't just give up. I had to fight. 

So I changed my profile picture to this to say thank you and show everybody that I hadn't given up. 

I went and sat in the hospital chapel for a while to gather my thoughts as I find it very peaceful and calming in there. Feeling a little better (and in need of pain relief) I decided to head back to the ward. Who did I bump into in the lifts? Kitty. 

She took one look at me and just held my hand. She didn't know about what had happened but just held my hand, not saying a word all the way to level 9 and gently guided me to the ward. 

We sat in the dayroom, me crying again and feeling utterly desolate. Unable to speak I handed her my phone with my blog post of 'The Conclusion' loaded up. 

As she read she shook her head, tutted, reached for my hand and began to cry a little herself. And then her eyes glinted and she took a deep breath. "How dare he! How dare he speak to you like this. We will sort this out. You need to fight this" she told me. 

"I don't have any fight left" I managed to say in between my tears. "Well I have enough fight for us both. Do you want me to help you?" And I nodded and so the fight had begun. 

Kitty herself has had experience in fighting hospitals to receive proper diagnosis's and treatment so she was the perfect person to be helping me. She began by drawing up a list of things we needed to do and I worked on questions that I would like to have answered by the Dr concerned. 

While I wrote slowly, still struggling with my low mood, Kitty was like a woman possessed scribbling furiously on the pages. Leaving me to work on my questions she headed off to find the PALS office (patient advice and liaison service) to speak to them about my experience and find out if they could support me. 

She came back with leaflets, and having found the PALS office empty had left a voicemail on their answering machine. 

Behind the nurses station is a giant board detailing all the beds, who is in them, what team is looking after them and an estimated discharge date. Walking last it I noticed that next to my name an estimated date if discharge of 21/03/14 had been written. 

In a complete panic I text Hubby and told Kitty, afraid that following Wednesdays ward round my Doctors were discharging me, thinking it was all in my head and that I no longer required any care or treatment. Kitty told me that there was NO WAY I would be going home- I was not well, it was not in my head and that it would be unsafe for me to be at home in my current state and with the unpredictability, duration, frequency and intensity of the pains. 

Kitty received a call back from someone saying that the PALS coordinator was unavailable but that they could take down the details and pass them on. With my agreement to act as my advocate Kitty went off to discuss my issues and concerns. 

By now I was exhausted, lying in bed, wondering how it had all come to this. Kitty came back and said she had given them all my details and that they would look into it. They couldn't stop me from being discharged- if my doctors felt I was medically well enough to go home then it was their decision to make but they could help me address the issues and concerns that I had, even if I was no longer an in-patient. 

It soon became time for Kitty to go and she helped my gather up all of our notes and leaflets, leaving with me two books to read and some arts and crafts stuff for me to do with the kids when they next visit. 

She really is so thoughtful and such a genuinely lovely person. I've only known her a short while but I'm very lucky that she came into my life. 

We were waking to the lifts when the Ward Manager came after us, asking if we had 5 minutes. Intrigued, we said yes and followed her back to her office. It was a bit like being called into the Headmasters office at school. You know how you get those butterflies in your tummy and sweaty palms and start thinking what you could have done even though you know you've not done anything naughty!

So we sat there and the Ward Manager said she had received an email (we think from PALS) expressing concern that I was being discharged and asking if that was definitely the case. This was obviously as a result of Kitty's work that afternoon. 

The Ward Manager assured me that I was NOT being discharged and that they had to put estimated dates of discharge on the board to essentially 'tick a box' (my words not hers). 

Knowing that I wouldn't be going home in my current state and left to fend for myself I breathed a sigh of relief. Kitty and I sat and talked with the Ward Manager about what had happened on Wednesdays ward round and she said she was shocked by what he had said and how he said it, especially after she herself had witnessed these episodes herself many times. 

I like the Ward Manager. She genuinely cares for her patients and her nurses and will do whatever she can to look after them. She has say with me during my episodes, rubbed my back, got my pain relief quickly- she has been fab and I can't sing her praises, or that of the nurses on the ward, enough. 

After the meeting Kitty finally went home. I've no doubt she was exhausted by the afternoon too but she promised to come back the next morning to help me to prepare for the meeting that had been arranged between myself, the Doctor and  my Hubby the following evening. 

I flopped onto my bed, feeling slightly better than I had that morning but just so, so tired. But when I rang Hubby to update him on the day I was in for another shock. He had received an email that shocked and frightened me and sent my reeling. I will tell you all about it in my next post. 

NB x