Chronic Pain, Disability, Ehlers-Danlos Syndrome, health

π™Ίπš—πšŽπšŽ πš‚πšžπš›πšπšŽπš›πš’ π™³πš’πšŠπš›πš’ – πš‚πšžπš›πšπšŽπš›πš’ π™Έπšœ π™±πš˜πš˜πš”πšŽπš!

Well, I wasn’t expecting to start a diary of my knee surgery quite so soon…

Originally, I was only going to start this blog series once I was out of surgery but so much has happened since I was first told I needed an operation that I figured I may as well start this series at the beginning.

When I first found out that I needed surgery on my knee (back in December 2019) I was geared up and ready to have surgery in March after returning from my holiday, with the aim to be back in the office by July to prepare for August, which is our busiest period.

Covid-19 then came around in March and everything got thrown out the window. I emailed the medical secretaries asking to confirm that I was at least on the surgery waiting list for once electives were up and running and they told me that they weren’t able to confirm that.

By mid-April I had resigned myself to the fact I wouldn’t have surgery until 2021. My GP eventually wrote to my surgeon and asked him to increase my clinical priority because of how unstable my kneecap is and how much it’s affecting everyday life. My surgeon confirmed that my priority had been increased but that electives were still on hold so it was unlikely to happen until at least the end of the year.

Again, I was mentally prepared to have to wait until early/mid 2021 for surgery and although the thought of having to wear my brace constantly for another 8 months or so was frustrating, I had come to terms with things and was happy to wait.

And then, everything changed again on Monday 27th July…

I went to see my Cardiologist about my tachycardia in the hope that I could start undergoing tests to figure out what is causing it, so that I could start treatment sooner rather than later. I was certain that the appointment would go well and I would start tests soon but unfortunately that never happened. My Consultant was amazing as always but he explained that because of my EDS, getting a diagnosis isn’t straight forward and that he was going to have to contact all of my other Consultants so they could work out what is connected and what isn’t. He then explained that there’s a risk that if I start invasive cardiac tests before my knee is fixed, the anaesthesia team will deem me unfit for surgery and at the moment my knee surgery is top priority.

I spent the rest of the day in tears as I was so fed up at the constant lack of answers or treatment. To some, it may sound ridiculous that I was so upset but when you’re chronically ill, unable to walk up the stairs without feeling like you’re having a heart attack and are being told that you can’t get a diagnosis or treatment for another year potentially, it’s devastating.

After a long chat with my family, the decision was made to contact my surgeon’s private secretary and be put on the waiting list for private surgery. This was not an easy decision to make and I was still desperately hoping that electives on the NHS would start up in time so I could have my surgery by the beginning of next year.

I work at the same hospital I was due to have surgery at and so on my birthday there was a staff briefing, where the announcement was made that electives would slowly start up again. And then, all of a sudden, my hopes were dashed once again when they told us just how many Orthopaedic patients were on the waiting list for elective surgery. I knew in that moment that there was no way I was going to have surgery on the NHS for another 6 months at the very least.

Once again, I had to pick myself back up and remind myself that things will be okay and that if I’ve managed to cope with feeling this unwell so far, I can cope for another year.

I put everything to the back of my mind and enjoyed the rest of my birthday, thanks to my incredible friends and family who managed to make my day so special, despite being away from all of them.

I was sat at work the next day when I realised I had missed a call from my surgeon’s private secretary. After the longest wait for her to call me back, I was booked in for surgery there and then for 7 weeks’ time. Safe to say that shocked doesn’t even cover how I felt. I spent the rest of the day at work filled with intense anxiety.

Now don’t get me wrong, I wasn’t anxious because I don’t want surgery. It was more because 24 hours previously, I was making mental plans for the rest of the year, knowing that I wouldn’t have surgery for months. I was ready to apply for an interim promotion at work to commence at the beginning of October, I was preparing to not return to my family home until Christmas at the earliest, and all of a sudden, I was told that I had 7 weeks to prepare for major surgery.

Instantaneously, I felt both a flood of relief and anxiety. It was confusing and quite frankly terrifying. I was beginning to think surgery would never happen and all of a sudden things became very real in the space of 5 minutes.

Fast forward a few days and I have now come to terms with things. Work have been incredible and said that another opportunity for promotion will come up but that right now I have to put myself and my health first. They have given me their full support to work from home for as long as I need to ensure I recover properly and have banned me from returning to the office too early.

I am feeling extremely grateful that I have the opportunity to have surgery done privately as I know this isn’t the case for a lot of people. I’ve had to make a lot of sacrifices for this to happen but at the end of the day, my health comes before anything else and I know deep down that if my dad was still here, he would be saying the same thing.

So… I have just over 5 weeks’ left of work and hopefully just 7 weeks’ left of wearing my knee brace (well before it gets replaced with a thigh to ankle one for 8 weeks…).

I have a feeling these next 7 weeks are going to go very quickly as they will be full of tying everything up at work, packing up the flat to move back home and getting everything, I need for the recovery.

As always, I will be documenting the whole journey on here, so if you’re interested in finding out how the lead up to surgery is going or how I get on afterwards then click on the β€˜follow’ button to receive updates every time I post.

Lauren x

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