You know nothing can last forever!

Life isn’t exactly going to plan right now. Not that it has ever really followed my plans in the first place, but this is all time crazy levels of spontaneous combustion sort of not going to plan.

My health is still not sorted. My Vocal Cord Dysfunction (VCD) has literally just gone right out of my control. Hospital admissions have become much more frequent and ive deteriorated faster each time and it’s all down to my VCD.

Normally when somebody has VCD attacks and your vocal cords start to spasm and your voice goes croaky, strained or changes in some way, or your throat feels tight, you start breathing noisily etc. when this happens, usually carrying out some simple exercises can open your vocal cords and make it easier for air to pass into your lungs. Once everything has settled down, that’s it it’s over.

Not for Joey here! I’ve previously managed to get full control of my VCD. About a year ago I had a nasendoscopy that showed my vocal cords were normal, they responded normally to stress, they didn’t overreact to any stimulus and I could breathe along happily with my vocal cords working great. Now it’s not controlled at all. My most recent nasendoscopy showed that my vocal cords were closing over when they shouldn’t just with normal breathing. I didn’t have to do any of the usual talking, shouting, spraying deodorant etc. to get them to respond. They were just closing over when I was normal breathing. When I was sat in the waiting room before my appointment I watched a woman drink fizzy drinks and eat two ice creams because she knew that would make her vocal cords react and then it would be seen on film in the test. I thought she was crazy! She must have been desperate to actually purposefully bring on a reaction; you wouldn’t catch me doing that for anything! But there I was reacting away without really knowing it. No wonder my control was way off.

Another thing that normally happens when people have a VCD attack is that once their attack is over its done. Or when they are doing the exercises and relax the muscles etc then the vocal cords respond well and stop closing over. Mine don’t. It’s a horrible feeling. It really annoys me that I can be having a VCD attack and then start doing my exercises to get control, things seem to be going ok and then the second I stop my vocal cords kick straight back into action. Even sometimes after Heliox or after midazolam when I’ve been completely knocked out, as soon as I start waking up my vocal cords go mental all over again. It’s so tiring. That’s the worst part of it all, just thinking you’ve gained control and the end is in sight then nope! Time for the vocal cords to spasm again.

As horrible as it sounds I manage to stay relatively calm most of the time. I’ve been told the worst thing that could happen is that I would eventually pass out, at which point my muscles would relax and I would be able to breathe again. Not a perfect fix but if they can literally just get everything to relax it stops and I am safe. That doesn’t mean that as soon as I start waking up my vocal cords wont overreact again and things start up again, but VCD can’t kill you. That’s positive!

Anyway, this wasn’t about my VCD. Although I don’t think I’ve ever really wrote about it so people may not know what it really is. If you’ve heard it, it sounds just as horrible as it feels, but really, VCD isn’t too horrendous so long as we keep my asthma under control so we only have one airway problem to deal with! What this was really about was how this is all affecting my life.

I’m 27 and a HDU nurse. I am regularly admitted to hospital, anywhere between 10 weeks and 2 days between admissions and my admissions have been 3 days – 6 weeks long. Most recently I’ve been admitted every few weeks, a lot more regular than it has been, which is probably down to winter viruses, a hectic life and loads of stress piled on top. Because of this, you can imagine it’s not easy to hold down a job. How I’ve managed to keep mine for the last 4 years is beyond me, but I have. I’ve never had the luxury of being able to call in work sick for a cold or a virus or feeling really run down. I have had to save my sick days for major sickness in order to keep hanging onto my job as long as I could. I have literally gone to work with a stridor, or wheezing away feeling absolutely awful, but knowing I had the energy to roll out of bed, get dressed and do my best to make it through 8 hours until home time. Sometimes it worked, other times it didn’t, but boy did I try!

I’ve always felt so conflicted going off sick. On the one hand I know my limits, and I have never put my patients at risk in any way. When I’ve had enough I know it’s time to give in and go home (or to a&e if it’s that bad), but then I’ve always worked so hard to stay in work because I love HDU nursing and I wanted to do it forever! Or at least for my foreseeable future anyway! But that is no longer possible.

When I first started blogging I wrote a guest post for a friend about how I managed to work full time as a nurse and manage severe asthma. I said I would keep fighting to hang on to my job as long as I possibly could. That eventually meant that I dropped some working hours and went part time last year to see if I could improve things. I also changed my shifts from long days to shorter shifts more often to see if that could help at all. But eventually the stress of fighting to keep my job has got the better of me. My health has definitely gotten worse as my stress levels have increased, and I have finally decided to listen to the tonne of people in my life who keep telling me my health is more important than my job.

As of yesterday I gave my 8 weeks notice in to work, and so as of mid-May 2017 I will no longer be a HDU nurse. A job I loved for 6 years is finally coming to an end and as always I have mixed emotions.

I cried and cried thinking about leaving, and knowing that it was me that needed to make the choice quickly before it was made for me. I have a bit of a plan, but I really don’t want to make my life aware of it because it always does something to go its own way! But yeah, my main thing is to go with life, see where it takes me, focus on getting healthy and somehow get by in life, and maybe one day get another permanent post as a Nurse.

On the other hand, I am so relieved. My future has never been more uncertain, and I no longer have something to fight for, but my struggle is over. I no longer have to feel guilty for being ill even though I can’t help it. I don’t have to get up and muster every ounce of strength I have to go to work and fight through another day instead of using that energy wisely and resting and building my strength in the hopes that my health won’t deteriorate.

I will be so sad to leave. My colleagues have become some of my best friends and like a family to me. I will miss so many people for so many reasons. It’s times like these I wish my entire life had been filmed and I could watch a little montage of the memories back, with some sad or motivational song in the background! But that’s not how life goes unfortunately. And I doubt anyone would have watched the movie if my life had been one! Instead, I’ll just live with the memories, and remember all the fun times, the laughter, the tears, the jokes, the hard work. These people have been with me for some of the most horrible things I have witnessed. They’ve been there when I’ve took myself off to cry in a room out of sight because a patient died, or because we broke bad news to a family, or because whatever we were doing wasn’t working. I’ve been part of a team that has saved lives, that has given lifesaving treatment, that has literally brought someone back from the brink of death. I’ve gone off work for a few days expecting not to see my patient again, and then come back to find that same patient sat in bed eating breakfast.

My colleagues have also been my nurses. They’ve looked after me when I was critically ill, when I was the one needing HDU care. They’ve insulted me, joked with me, built me up, given me confidence, taught me, encouraged me, dragged me through the tough days and loved me for who I am. I wish I didn’t have to leave the job I wanted to do forever, and the friends that helped make the days pass quickly whether good or bad. But I have to. My days are numbered 😦 but they most definitely won’t be rid of me for good!

Being a nurse is an absolute privilege. Caring for people when they are at their most vulnerable is such a humbling experience and nurses have the power to literally change lives, not just through the treatments they provide, but through the care they give and the way they treat people. I just hope I can find something to do with my life that is just as rewarding.