Plans plans and more plans! — July 25, 2017

Plans plans and more plans!

It’s been a couple of weeks since I last posted and I’ve been pretty busy with life and health things so time for an update?!

First of all, Rome was amazing! Really busy, really really hot, really really really tiring but oh my goodness, it was all I imagined and so much more! Crossed a few things off the bucket list 😀

Had the time of my little life, and ate loads of great food!

I ended up taking about 3 weeks off work including the time I was in hospital so I had a bit of time to get over my admission, go to FSY training in Nottingham for the weekend then off to Roma. Life is a bit of a whirlwind lately. Lots going on with family and friends, and I’m glad that I’ve had some good days and great memories in amongst all the crazy parts too. I’ve been back working night shifts, and managed my first long day shift in over a year! It flew by, but I’m not making a habit of them!

Because of my last admission, I missed my second Speech and Language appointment. I was a bit annoyed with myself missing it as we seem to be getting a fair bit done in them. No new speech therapy, but a quick check over my technique, a few questions about when I do the exercises, how many times etc and thats the main point of the appointment over. But my speech therapist has been amazing recently. She used the appointments more as a way to coordinate all my care and plans. I was glad to make it to my third and last appointment. We went over things I had questioned in the first appointment, she had sorted everything and had all the answers and plans that we discussed, and she had more. I answered a few questions which the consultant had asked her so that they can discuss again in another MDT meeting before seeing me and planning what to do next. But we went through the list of things that were being thrown around as possibilities.

1 – same as what always happens at the end of a speech and language course, I need another nasendoscopy and SLT always book me onto the list were my consultant will be present too so we can discuss and move ahead without having to wait for weeks and weeks for a clinic appointment.

2 – they want to see how midazolam effects my vocal cords. Apparently when other people have IV midaz with VCD it usually tightens their vocal cords, making matters a whole lot worse. But for some reason it works for me. I told her it’s usually a whole load of midday before I fall asleep and it makes everything settle, sometimes for good, sometimes just for a little while and it flares back up again pretty soon after. So I may or may not be having midazolam during the nasendoscopy if we can set off my VCD and see what effects it has.

3 – she asked if I wake through the night and/or get VCD attacks during the night. I said yes straight away, when I’m really unwell with my VCD it always flares during the night which can lead people to think it could be my asthma. Up until very recently it has always been thought that VCD does not effect people during their sleep as you’re relaxed and so your vocal cords shouldn’t be strained or effected during this time. Apparently my consultant was really excited when he thought I may have nocturnal symptoms. I wasn’t so excited to find out that there is recent evidence that VCD can flare during sleep because I’ve always been told that the worst that could happen to me during an attack is that I will pass out from lack of oxygen and then because my body is essentially in sleep mode, everything relaxes and the VCD attack should be sorted and you are safe at least until you wake up and it flares again. If they now think it can happen during sleep, is that still the worst that can happen? Can they rely on the fact that if I were to pass out it would all sort itself out? I didn’t think of this during the appointment so I didn’t get to ask, but its on my list for August!

4 – Because I have night time symptoms they may send me for a sleep study. I don’t know what will happen there, I don’t always get symptoms of a night that I can tell, so not sure what the plan would be with this.

5 – I need a repeat 24hr pH test and the other thing I went to Salford for a couple of years ago. Preston will be doing the tests themselves so they want to repeat mine and see for themselves what goes on.

6 – I could be a guinea pig to trial CPAP for VCD. I would have it at night and then also for during an attack. Follow my usual steps of increasing exercises, heliox plus exercises, and then add in CPAP before my usual last step of hospital for midazolam. Apparently the idea is the pressure from the CPAP would force open my vocal cords when they’re closing over, or at least force in some air. I don’t know though, thats not how we have ever used it in work, but I’d be their guinea pig so if it doesn’t work then at least we tried.

So yeah, lots of things for them to be thinking about and I could end up doing all of the above or only a couple. We will see. But if we don’t trial all of them, I’ll always think that the one we missed could be the one to fix it all. I’m a try anything type of person, if it could help, and improve my quality of life then I am all for it, no harm in trying!

Anyway, I’m not long home from camping in Wales and my bed is calling my name!

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x

 

 

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4th July — July 3, 2017

4th July

Tomorrow marks 4 years since my asthma went crazy and i was first admitted to hospital for a week. I’ve been writing a post around the “anniversary mark” for a few years and I guess it’s kind of a sum up of the past 12 months and a hope for the future months. I would post tomorrow but I have other plans 😀 and I’ll be happily exploring Rome with my brother. Definite improvement from 4 years ago!

So what has happened this last year? Well the big one is I left my job. Hanging on to that job was something I was always so proud of and every year I’d just think, well at least I still have my job. Well not any more! But you know what…it’s been one of the best moves I’ve made. It hasn’t been plain sailing, it definitely did not go to plan, and it was a complete last minute decision before my options were chosen for me and I may have lost my career as well as just my job. I made the move and handed in my notice, literally days before I was going for a big meeting to find out my fate. I was unbelievably stressed out with everything, I was crying all the time, I wasn’t happy at all, and I just thought about losing my job constantly and thought I had no way out of the stress. The day I decided to give my notice I literally cried my way out of work, thinking there was no way I could work 8 weeks notice, so in my mind, that was the last time I would work on HDU, the thought of going back just to leave was not something I wanted to do. But after I wrote my notice and actually gave it in, I can’t explain the immense relief I felt knowing I had taken control, I had some time to try and sort something out, and I was probably going to be ok. I worked a lot of my notice, I was off sick at times still and I didn’t feel guilty once for calling up saying I wasn’t well. There was no worry about the consequences, I was leaving anyway, I could start caring about myself a bit more. I think it was around 2 weeks left of my notice when I worked my last shift. I was admitted to hospital, stayed in for about a week and then took the following week off to recover.

Instead of a permanent placement, I applied for the staff bank, and after a couple of weeks off I bit the bullet and booked myself some shifts in work. I’ve only worked in A&E for 3 shifts, and then all the other shifts I’ve had have been on my own ward! I worked for 5 weeks doing nights, earlies, lates, and I was doing good. It had been about 8 weeks since my last admission (double what I was previously getting out of hospital) and then I was admitted again. No big deal, I was out after 2 nights, and back into the swing of life.

8 weeks hospital free is a major improvement for me lately. It got to the point where I would approach 4 weeks and know my days of freedom were numbered! But I definitely think a reduction in stress, choosing my own shift patterns, and throwing myself back into a social life, enjoying time with my family and friends, really helped me to keep control for a lot longer.

So since last July I have had 9 admissions, 1 involved ITU and 4 have been to the NIV unit. I have had further tests in Preston and some new treatments, 2 courses of speech therapy and a plan to review soon and update what is going on. My asthma has been well controlled (everyone please touch wood for me!!!) and it has only played up occasionally with colds and hay fever.

I have also had some great times in the last 12 months. I cut my hair to make a wig, I raised a whole load of money in the process, I’ve baked more cakes, I’ve rekindled friendships, I travelled to Essex to see one of my best friends’ little boy be blessed, I’ve started up a new “hobby” and it’s going pretty well, I’ve took control of my life, I have been to FSY training and took myself completely out of my comfort zone! I’ve been out for meals with friends, I’ve been to the caravan 3 times already this season, I went kayaking on the lake and had a total mama mia moment, I was involved in a Christmas play, I’ve been to conventions with friends, I got lost in the woods, I went trampolining! I picked giant pumpkins with the kids, I made the most epic halloween costume (with the help of my fab sister!), I went to Harry Potter Studios and overall I’ve literally had the time of my life. How I managed to fit all that in and 9 hospital admissions, plus work, I’ll never know, but I did it.

I am so much happier with my life right now. I get to spend time with my family and enjoy good quality fun days out, I also get to be home to help out when I want to and when I’m needed. I can choose if I go to events or miss out and take shifts in work, I can choose my availability. I wouldn’t be here in this great place, excited to be off to Rome tomorrow without the help of my family. They are simply amazing and I’m so glad I get to be so much more involved now that I’m working bank shifts.

My plans for the next 12 months? Just keep swimming. Keep slowly plodding along getting longer and longer out of hospital, and enjoying more and more time out with friends and family. I get a new niece or nephew in December, I hated being so sick when Jessica was a baby, I ain’t doing it again for baby number 4! I want to knock another 3 goals off my bucket list (I usually say 2 a year but I am already going to do those in Rome this week!) Keep putting myself out there, get out of my comfort zone more often and just enjoy life as best as I can!

Thanks for all the support guys! Til next time! xxx

 

International Nurses Day — May 12, 2017

International Nurses Day

Happy International Nurses day to all the great nurses that I know out there, to the nurses I have worked with, who have looked after me, and every other nurse who has made a positive impact on somebody’s life.

Nursing is such a privilege but also a really difficult job. I have had the great pleasure of working as a high dependency nurse for the last 6 years and 3 months and today marks the end of that adventure. Although the last year or so hasn’t been the most pleasant to go through, I definitely look back on my time as a HDU nurse overall as amazing experience. There have been good times and bad, I didn’t think a job could be quite so stressful, but then it also brings the greatest rewards.

A lot of my memories of work are full of laughter. The highlight of my whole time there was a night shift with one of my best friends, we were in a room together with 2 patients each and everything just went crazy all at once. We had 3 patients we needed to sort out at one time, we were tired, the patients were confused or shouting out, it was early hours of the morning and we stood in the middle of the room just wondering which problem we had to sort out first. I’ve never laughed so much afterwards, I think that night shift made us completely delirious! Night shifts didn’t agree with me at all! When I first started driving I offered somebody a lift home in my car after a night shift, I bet she regretted it after we got into the car and the first thing I did was back straight into a van parked behind me! The man in the van found it funny, but I never did take that person home again! i wonder why?!

One of the people I work with is the funniest person I have ever met in my entire life. She literally made me laugh every single shift we worked together. Without fail she could make any shift fun, even if the ward was absolute bedlam, you could always count on her to keep everyone going. Even if the only way she could make people laugh was by insulting me, pointing out my moon head, or apologising to patients that they had to have a Mormon look after them because she couldn’t find anyone better to help. I’ve never felt so “accepted” as I did by being insulted so much!

Some days we have to make the days pass with laughter, nursing is a tough job, and if you’ve been a patient and listened to the nursing staff talking to each other, you will realise they are completely normal, insane people. We talk about things happening in our lives, whats going on on the ward, our plans etc, but then we also find out exercises to banish cellulite, or laugh when a certain someone confused the word claustrophobia with chlamydia and shouted that they had the latter loud enough for everyone around to hear!

I’ve stood a patient up from a chair to get them into bed and the flood gates open, all hell breaks loose and it splashes up your legs, on your shoes and tights. At the time, you think it is soaking deep into the layers of your skin never to be scrubbed off in your lifetime, but it sure makes everyone laugh. I made a quick stop to Tesco on the way home, took my tights and shoes off, threw them away and went home wearing a new pair of shoes with no tights on.

I’ve had more nicknames in work than I have in my lifetime! Cainy, Miss Cain, Jo Bob, Josephine, Josephina, Sick note, Moon head, Mormon sl……I’ll leave that one there! But seriously, some people didn’t know my name was actually Joanne because I go by Jo or one of many other names. One of the girls from work actually came to visit me on the ward once when I was a patient and asked if Josephine Cain was on the ward!

Did you know they made a brand new tape for the hospital that wouldn’t pull hairs when you pulled it off a patient? Well they didn’t, but that didn’t stop me from persuading someone that they actually had invented it and quickly sticking a huge piece of tape onto her arm then laughing for so long as she tried to pull it off.

Sometimes patients cause all the laughter, sometimes on purpose and other times they don’t know. I’ve had a patient convinced the suction was his magic stick of power and proceeded to try and poke and stab everyone with the magic stick of power. Didn’t end too well when we tried to get the magic stick of power off him so he couldn’t hurt anyone but it did make us laugh later. Or that one patient that insulted everyone in the worst possible way, but then went on to embarrass me way more than I thought imaginable. She had to pick the most innocent one to insult so horribly! I didn’t live down what she said for weeks, and it still gets brought up from time to time.

We’ve flooded rooms with blocked sinks, compared scratch marks off patients, walked around with wet feet all day after showering patients, I’ve educated the staff with all my mad skills of knowledge about the pylorus. A young patients family asked me what happened during the operation the patient had had, and what had been taken out and what was left behind. I read the scribble in the notes not making head nor tail of it and said “well she’s has a pylorus preserving pancreatoduodunectomy, so whatever the pylorus is, you still have that!”. Honestly. I am a fully trained nurse. I am capable of looking after patients, no matter how bad I sound! I quickly found out what a pylorus was, and kept my head down the next day when posters appeared around the ward labelling different parts of organs and the pylorus was highlighted. People were asking why they were up and who didn’t know what was on the posters. It was me guys! I know now though! And I tell everyone.

I’ve always tried to enjoy my time in work, we always try to make the day fun because sometimes the things happening around us can be so stressful, we can’t let it take over and effect us too deeply or we would never be able to face another day of work. We really do get to know some of our patients and they become part of our HDU family because they’ve been with us for months. We have some lovely patients and relatives that I will never forget in my lifetime. I have learned so much from nursing patients, interacting with families and working along side a great team of people.

I’ve had the unfortunate experience of being looked after by my colleagues too. Every single person made those times easier. Parts of it will also live with me forever, and I definitely changed the way I nursed after the experiences I had. I knew what a good nurse was, how it felt to be a vulnerable patient, and I know just how amazing some of the people I work with truly are. I already knew they were great working alongside them all, but receiving care shows me that our patients would know what I did, that these people are not just doing their job, they aren’t nurses for the pay, they truly care, and are amazing people.

I made friends in the strangest ways sometimes! Like the time I honestly thought my lack of knowledge had caused a patient to get sick, the patient was always safe and a sister helped out and sorted everything, but at the start of my HDU career I thought it was over! I cried in the cupboard when someone asked me was I ok, and that happened to be the start of a great friendship! Another person was literally just as sarcastic and “jokingly” mean as I am and we clicked right away with our mutual love for sarcasm and food. I’ve loved corridor chats with my favourite mentor, being in a bay with my carer, causing trouble and having fun wherever I went. I swear most of the people I worked with probably thought I was uncontrollable and a pain! I know you all think I’m stubborn too, and I am, I am so strong willed, I was determined to carry on in work.

So I’m gonna finish this by saying THANK YOU to the amazing nurses I worked with. To the amazing friends I have made forever! I haven’t mentioned memories with everyone but trust me, I have so many great memories, nobody would read this far down if I mentioned everything. To anyone who has nursed me, thank you for your help. I literally wouldn’t be here without you! To anyone who gave me words of encouragement or support, or let me cry, thank you, you kept me going. To people who have met up with me outside of work, who have visited me when I’m sick, thank you! You made me feel loved and missed. To anyone who let me have fun in work, or laughed along with me, or made me laugh, thank you for letting me be me, and be comfortable and happy in work. To anyone who ever taught me anything, thank you! I would have had way more embarrassing moments of not knowing what was going on without our help. To all my friends, thank you. I’ll miss working with you so much! It’s been a pleasure, even the hard times, and as much as I wish life hadn’t gone this way for me, I wouldn’t change the last 6 years for anything.

Are you sure it’s only a 3 out of 10? — April 19, 2017

Are you sure it’s only a 3 out of 10?

I guess a new Preston plan deserves a blog post?! After all, I’ve been waiting on Preston to try and help me for 3 years now…or there abouts!

Today I had my 29 millionth nasendoscopy. Feels like I’ve had that many anyway! Probably only had about 10-20, but the more I have them, the more pointless they seem. Why do they insist on checking I still have vocal cord dysfunction so many times when they aren’t going to do anything about it? I had one a few weeks ago during my last admission in Aintree. They’ve never seen my VCD before with the scope so they had a go, and guess what, I’ve got vocal cord dysfunction! Shocker! It’s so depressing constantly battling to get help with my health, having such frequent admissions, losing my job, taking loads of medications and literally getting nowhere, with everybody trying to pass the book to someone else and nobody really seeming like they want to help.

Today was in Preston again. I’ve recently completed my third round of speech therapy or “intense therapy” as they call it. When I started this round a few months ago, we upped how often I do my vocal exercises (and no, it’s nothing like Sharpay on High School Musical…thankfully!). Infant, I’ve only been “caught” doing them 3 times in the last few months I’ve gotten that good at doing them as I go and not drawing attention to myself. So I used to do the exercises two or three times a day like my last speech therapist advised. This time, I was told to increase that to doing the exercise five times, 20 times a day! As I’ve said before, my VCD pretty much comes back as soon as I stop during an attack, its the same when I’m just maintaining things. Doing the exercises and my airway is nice and open, stop and it takes 2-3 breaths for it to start tightening up again.

So onto today, nasendoscopy 29million, I refuse the local anaesthetic spray because that is the worst! Then they put the camera up your nose and into the back of your throat until the camera sits just above your vocal cords and they can be seen on a screen next to  the bed. I couldn’t see the monitor though during the test. They asked me to just breathe for a bit, and then on a scale of 0-10 how would I rate my VCD. Clearly a 0, I did’t feel any different to normal. Then I had to count from 1-10 out loud, say eeeeeee and a few other things, and again they ask on a scale of 0-10 how is my VCD. Again it was 0, no different to how I normally feel in everyday life. Next step was counting from 1-10 but getting gradually louder until you are shouting by 10. Then on a scale of 0-10 blah blah blah, still 0. The speech therapist in the room then asked my consultant if they could push me further and use some deodorant to see how I responded. He asked was I symptomatic or wheezing and the speech therapist said no not at all. She sounded a bit surprised but they went on and sprayed the strongest mens deodorant my nose has ever experienced. I purposely breathed it in through my mouth in the hopes I would react to it. I was so not ready for a negative test after all my admissions lately, I was not getting told everything was ok today! And then they asked after a few breaths of the grossest smell ever, on a scale of 0-10….I said about 3. They told me to turn my head to look at the monitor, “are you sure its a 3/10?” and I could see my vocal cords really tightening up on the monitor, but it definitely felt like a 3, it didn’t feel that bad! We then went through all my exercises so I can see it on the screen that when I do them my vocal cords do open up to let air in, but then we could see after a few breaths it does start to reverse again. Apparently my 0/10 when we first started was worse than what most call a 3/10 and so they said if I wait for 10/10 before I give in and go to A&E they aren’t surprised at all because it would be some major tightening to get me to that level. I do wait until it’s bad, because for the last 3 years everyone medical has been telling me I should be able to control my VCD myself, without need for hospital or any intervention. I wait until it’s an 8+ when I’ve got a stridor and you can hear me before you see me! I know at that point I can’t control it myself, that I do need help. And it seems like they finally understood that today.

So everyone agreed, my VCD is worse even after speech therapy again. I am starting on some tablets that effect the nerves in your body with the hope that my throat and vocal cords will become less responsive over time. As soon as my GP gets this report I need to go and see them so that I can start on that, and then the dose will be increased a few weeks later. In the mean time I have to go back for another round of “intense therapy” and then after that have my 29 million and 1st nasendoscopy to see how I respond to it all. If it’s not improving enough, or at all, then they will discuss further medical interventions. A lot of people have been asking me if they will consider botox in my vocal cords but my consultant mentioned it today and said he doesn’t like doing that, and does’t think the benefits outweigh the risks. If they opt for the botox option it would be injections every 6 months which would progressively just paralyse my vocal cords/throat and I would eventually lose the ability to swallow, but not before I started regularly aspirating and developing frequent chest infections and pneumonias and therefore worsening my asthma. So it’s not a decision he will take lightly. And hopefully that means theres a different option he’s just not even mentioned that will be my little miracle cure and sort me out!

But for now I’ve got to buckle down and get on with it! Increase the number of times a day I do my exercises even more, trial the tablets and more speech therapy sessions. Apparently it’ll be another 3 years or so before I get control over it all properly, and thats if everything goes to plan! Let’s hope I can do as I’m told for once in my life hey?!

You know nothing can last forever! — March 18, 2017

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.

Find happiness in 2017 — December 31, 2016

Find happiness in 2017

2016 hasn’t been the worst year for me. I know it could have been a whole lot worse. And for that I’m so thankful! 

  • I’m still working 🙂 and I’ve actually been in work a heck of a lot more than previous years! So I kind of achieved my goal for the year which was to be in work more. I more than halved my sickness absences and if that’s not an achievement then I don’t know what is! My record still isn’t great but I’m headed in the right direction, maybe 2017 is the year it will work out! 
  • I’ve had so many great adventures and firsts! I should have known it would be a fun year when we got stranded in the snow in Nottingham for a night in January! I’ve been to London. I saw a west end show, Wicked! of course! I went to Harry Potter world. I was a tourist in my own country for 2 weeks and it was great! One of my best friends came over from Canada to visit and we had an amazingly fun time! We saw Harry Styles home town and the bakery were he worked, took a train to the top of snowdon, visited church history sites in Preston, we went to Lyme Park and dressed up, Cheshire ice cream farm for ice cream, Rhyl, Conwy, Londonnnnn! I had a great time with Laura and Pam and didn’t want them to leave! 
  • I went to the Temple 🙂 and I love it there. 
  • I was a bridesmaid for one of my bestest friends Ashleigh! Got to be part of her crazy dance idea for her husband too haha! And then when she finally came back up to Liverpool we found out she was expecting a new little addition to the family! And I can’t wait to meet the handsome little man in 2017! 
  • Ive had fun days out with friends and family. Ive really found out who my friends are this year, and not in a negative way! So many people have been there for me and helped me. I definitely have great friends and family. I’ve been out for meals, the beach, the pine woods, to see the Grinch in Sefton park, weddings, conventions, dances, safari park, bbqs, I was in a play!, baby showers, parties etc etc etc. I’ve loved it all! 
  • I got a new car! I miss my Jef don’t get me wrong, and I hope he is happy now with a new owner, but Deb is great! She’s beautiful! And I’m looking forward to many more adventures and car music videos with her! 
  • I made a wig with my hair! Cross that of my bucket list! Best thing I’ve ever done. It felt so good to be able to give something to help someone else, and all the support I got with sponsors was amazing! I raised over £500, thank you! And I like my short hair now! Think it needs a trim again soon, it’s starting to grow out fast!

So yeah, life has been pretty fantastic at times. It’s been a great year for positives, and it’s had its down sides too. But so does every year. And it’s best not to dwell on them, to smile about the good times and move on to the next year. I hope I have many more adventures and good times in the next 365 days, I hope I keep strengthening bonds with family and friends, and I hope my health improves. 

Merry 2017 everyone, may it be better than last year, and as I’ve said before to everyone who reads this, I hope you have a happy 2017! I wish you not what you want this year, but what you need. That whatever life throws at you, you will have the courage, strength and determination to face it, and do so with a smile. That way, you’ll find happiness even in the sad times. Much love to you all! Xx

I don’t want to be a pie… — November 27, 2016

I don’t want to be a pie…

I know a lot of people aren’t happy with the choices I’ve made in my life recently. But I feel that if people understood why I’ve made those choices, they would realise I’m as unhappy about some of the things I do as they are. If not even more.

I can’t stop evaluating my life recently. Thinking about what matters most to me, what I feel like I’ve accomplished, what I hope to achieve, and what I know I can do better. Have you ever had one of those moments, like in Chicken Run : “me whole life flashed before me eyes”? Sometimes it’s not even a moment, it’s a day, or a week, or an hour. Whatever it is, when my whole life flashes before my eyes I don’t want to think “it were dead borin'” I want to know I did all I could and made the most of it.

I always want to make sure I’ve fought my hardest. I never want to give in and let anything beat me. No matter what happens, even if things don’t go the way I want, or how I plan, if at the end of it I can say I gave it my absolute best and I didn’t sit back and let fate take its course, then I’ll be happy. I want to grab life with both hands and make the most of it. I don’t want to sit at home and miss out on things because I’ll probably have to pay for it further down the line. I don’t want to stay in bed when I know I can roll right out, get dressed and face the day, smash whatever comes my way. Even if it’s a struggle, even if it feels like the hardest thing in the world, I know I have to do it. I probably sound like the most stubborn person, and in a way I think that’s a good thing. There’s a quote I love that says: When life gets more than you can stand, kneel. How can I expect to kneel down and pray for help when I’ve not given it my all? I can’t expect everything to be done for me, I have to try my best and then I know I will be helped with my shortfalls. 

Even if I’m unhappy, I want to make others happy. I want to help make other people’s struggles and difficult days better. I’ve had so many people be the answer to my prayer. Have you ever got an unexpected phone call, or text, and it’s just what you need? I’ve had so many. I hate it when I get the feeling that I should talk to somebody and I put it off, only for that person to message me a day or two later and all I can say is “oh I’ve been meaning to message you!” Surely it would be so much better to be the message out of the blue for them, instead of having that little feeling of regret when you know you should have made contact first? Or what about those days when you really can’t face the day, you’ve got that Monday morning blues or something and you drag yourself to work, and there’s one person there who is going out of their way to help you, or even doesn’t do anything out of the ordinary but manages to make your day that little bit brighter? I love the feeling I get when I’ve felt like I’ve made a difference in somebody else’s day, when I’ve helped somebody in work that has been really busy, or when I’ve held someone’s hand that was worried or anxious, when I’ve been able to listen to somebody’s concerns and say “I’ve been there, I understand.” Service is meant to be selfless, but the more selfless service you give the more you are blessed. Try it, just try to brighten somebody else’s day without improving your own. You can’t do it. You will always feel better for it.

Family comes above everything. It’s old news to anyone who knows me or has read any of this blog, but I’ll say it again because it’s truer every day. I have been blessed with the most amazing family. I’m one of the lucky ones when it comes to family. I’m surrounded by them. We have 11 for dinner a lot of the time. My mum, dad, brother, sister, brother in law, nieces and nephew are the best. They are perfect for me. They do so much for me, they make me who I am, and support me through anything. We have extended family all around us. Just this evening we went for a meal with family and there was an entire section reserved for us, and we weren’t even all there, there was still people missing. It doesn’t matter how long we go without seeing each other, my family are the best. We fit right back in as if we hadn’t been apart. And who could forget my friends? After all they are the family we choose for ourselves right? I have the best friends ever. I have the perfect mix, they’re just the right amount mean, caring, loving, sarcastic, joking, and supportive to get me through anything! I class so many people as my friends, people from work, from growing up, from church, online friends, when someone has helped shape me into the person I am today, when you show me you care, worry about me, support me, encourage me, you’re my friend. There’s no getting rid of me. I never want to let my friends or my family down. 

So aside from the fact that I’m stubborn, and that I don’t want to be “dead borin'”, I make my choices based on those points. I don’t want to let people down who invest so much into me, I don’t want to disappoint my family or friends. I want to help other people, I don’t want to sit and wallow in self pity or be a burden to anyone. And I want to give life my all, have all the experiences and try my absolute hardest to succeed, knowing that if I do this, I’ll be blessed to have life go the way it is supposed to, even if it’s not the way I want it to go. And it’s definitely true that life has thrown me some curveballs lately, but I’ve stuck at it, and I feel that I can hold my head high and say I’ve faced it in the best way I know how.

Home and happy!  — April 28, 2016

Home and happy! 

I said I’d update when I was home and happy so here goes! 

I got home Wednesday night and went straight for a bath, which is usually my first step in the whole dehospitalisation process. (I swear that’s a real thing!) I had every intention of getting out of the horrible patient feeling, and getting back to my normal human self. The plan was a bath to relax and get rid of every last bit of sticky left over from the tape and dressings that have been covering my hands and wrists for a week, wash and condition my hair, and then to dry and straighten it so I could look and feel a lot better. Not a chance! 

I did get a bath, mandatory lush bath bomb included, and managed to get the majority of the tape marks off. (I was actually gutted when I found little bits I’d missed today!) But the whole idea of drying and straightening my hair?! I didn’t even want to brush it but I knew I had to! Thank goodness I’d conditioned it so it wasn’t as tatty as it had been. If it had been nearly as bad as when I had a nurse brushing it for me at 2am because I looked a show, then I definitely would have just tied it back up wet and knotted with the plan to attack it another day. 

After that drama, it was time for a film (The Proposal) and bed. I didn’t sleep well through the night, it took ages to fall asleep, I woke up what felt like a million times, and at 5.30am I was about to give up hope. Next thing I know, it’s after midday and I’d just woke up 🙂 rolled out of bed for a couple of hours then went back to bed to get warm and woke up after 6. I was so shocked. I didn’t nap once in hospital. Normally when I’m in, I have at least an hour every afternoon, but this time I didn’t have anything. Must have been because I was flat out most nights with all the drugs I was given. 

So that ruined my plans of organising my life today. I definitely have to wake up in the morning tomorrow and sort out things like seeing the doctor, replacing my heliox supply, maybe reuniting with Jef?! 

This hospital admission was so much different to any of my others. The VCD part has never really been that uncontrolled before. I know it’s always played a part in my breathing problems, and I think it was a big factor in my admission in feb too but not to the same level as this past week. I’ve always thought of VCD as my lesser problem, I guess I’ve always looked at it in the same way I used to look at asthma when it wasn’t a problem for me. But now I know it’s definitely a problem, and maybe even a bit more worrying because not everyone knows about it. Even when people do know a bit about it, there’s not really a lot that can be done to help. I sent my respiratory team everything I have on VCD because they didn’t really have anything about it, and they want to be able to help me and any other patients that they may have with VCD. 

I’m glad they treated me the way they did this past week, whether it’s something they can keep doing on future admissions I don’t know, but I’m glad I don’t remember a lot about the horrible parts of my stay. A plus side to all the things I was given was that they had an effect on memory. I may have still struggled for a while, but I woke up every time remembering the start of the attack, remembering people coming to help, remembering them giving me some medication, waiting, and then giving me some more, and then I woke up. I know for definite that on one of the occasions I struggled the whole time until after I woke up, I’ve not asked about the other times. And for now, I’m content with not knowing. 

All as I do know is that once again I’m so grateful to the staff at the Royal for everything. There were some amazing staff who helped me way more than I think they realise. I would trust the nurses and doctors with my life over and over again. And I even survived the Junior Doctors Strike that was apparently “putting patients lives at risk”. I felt safe with the junior doctors there, and I felt just as safe when they were on strike. I’m forever in debt to the NHS, they’ve saved my life so many times now.

  

Asthma, VCD and confusion — April 24, 2016

Asthma, VCD and confusion

I’ve not blogged in so long about my asthma! 6 days into my latest admission feels like a good time to update everyone! I’ve been admitted regularly still but got pretty fed up of how monotonous it all got so didn’t want to bore you all anymore than I had to! 

This admission has been pretty different to normal. My VCD is playing absolute havoc with my breathing and I’m having attacks really regularly. So far the only way they’ve managed to break the episodes is with a big whack of midazolam to relax all my muscles. Even then I can still be struggling along for hours. I didn’t wake up from one dose (which was pretty big) for a good 12 hours or more. They’ve given me drugs while sat in a chair and ended up having to pick me up and put me on the bed so I didn’t slide onto the floor. I’ve had another head CT because I was not responding for so long. There’s been loads of emergency MET calls, high NEWS scores, blood gases, needles, meds, nebs and a few cylinders of heliox. I’ve had the usual horrors that happen when you’re unresponsive and can’t do anything for yourself too. One nurse told me not to worry what had gone on while I was unaware and to be more bothered about the state of my hair! Don’t worry she brushed it and braided it for me!

I’ve got to admit though, the worst part was when they were trying not to give me midazolam and gave me regular lorazepam instead. I’ve never hallucinated or been so confused ever, and I never want to be again! The hard part about it is, it all happened. To me, it was all so real, and still is. I can obviously tell now that I wasn’t being tortured every time I slept, my phone screen had not suddenly become 3D or bent, I was not on a spaceship being forced to be on the red team when the blue team were destroying us, and my oxygen tubing didn’t talk to me. But I can still remember a lot of it! That’s probably not even half of what was going on! I’ve tried figuring out where I got some of the thoughts from, and what I could have seen or heard and warped it into what my brain remembers. It’s weird how sometimes a drug can make you forget everything that is going on, but the times when you could really do with not remembering it lets you hold on to those memories! Thanks brain! 

Thankfully, the confusion is over, I’m trying my luck without that drug for now. It’s only been offered a couple of times since, and not having it is working most of the time for me so I’ll go with that! I’m still on the NIV unit (the step down unit on the respiratory wards, or is it step up? It’s like a mini HDU that’s not a HDU.) I’m still hooked up to monitoring, and I’ve still got jelly legs whenever I walk. I’ve known most of the nurses looking after me for almost the whole time I’ve been getting admitted here and they couldn’t be better, they would do anything for me. Someone bought me a magnum when the ward was really hot, someone else got me her own mug from the staff room and made me a hot drink. Some of the nurses just sit and talk to me for however long I need. It’s a good ward! And it’s definitely great to have someone understand what you’re going through, to offer words of encouragement and advice, and to make you feel like you can talk about anything and not have them think you’re crazy, or laugh at you. 

It does get hard to stay positive, I’ve put my family and friends and even myself through so much now. This week has definitely took it’s toll. Thanks for all the help, thoughts, encouragement, messages, visits etc etc. It does mean a lot to us all.

  
And that’s pretty much it, I’m just sat here slowly improving and waiting to get sent home 🙂 still colouring in the same little page I started days ago! Hopefully I’ll remember to update when I’m home and happy! 

Journals — January 3, 2016

Journals

I go through phases in my life where I love to journal. There are times I would rather do anything but! Recently I started my 6th journal since I very first started way back in 1998, aged “8 and 1/3”. I often look back through the books, read the odd random entry. Sometimes I get carried away, I flip to a random page and start reading, and I don’t stop until I reach the end.

I did that tonight. When I write in my journals I sometimes don’t see the point. I don’t get why I write what I write, what use it has. But tonight I read months worth of entries from my teens. It’s sad for me to see that I’ve not always been the person I am today, but I can clearly see how what I went through has shaped me into the person I am today. And I realised something as I sat reading about all my troubles I had back then. I realised that through everything, I’ve always had the constant love of my family. Friends come and go, not everyone stays in your life. You can’t always please people, but no matter what, my family is written about in every book. They are my constant. They are there for me even when I don’t realise. 

I see now, more than ever, how much my parents and family love me. How much they sacrifice for me. What they go through when I’m sick, how they drop everything to be there for me. I’m blessed. I know that now, and I will know it for the rest of forever.