2018 week 1!

This week has been a good week for the Cain family! Definitely a great start to 2018.

We didn’t start the New Year off together, Richard was in the Isle of Man, I was in a hotel in Wigan with friends, Mum and Dad had stayed home to see in the New Year and Nicky and her family stayed up to see midnight in their home.

Tuesday was a great family day. We got Oliver, Charlotte and Jessica for the day, and Mum, Dad, the boys, Christine, Lily and I all went to Southport to let the kids play in the penny arcade. They all had a great time playing on the games and winning some tickets, followed by food and then home.

Charlotte cashed in her Christmas present from me which was a pamper day using all the pamper things I got her for Christmas. We started off with a nice warm Lush bath, followed by foot spas, facials and nails. She loves a bit of one on one time so I think she enjoyed herself!

We finally got Richard home after a windy few days delaying his boat sailing home from the Isle of Man! Thankfully he was back in time for the weekend of fun!

Saturday was Charlotte’s 8th birthday. Turning 8 is a big deal to Mormons. It’s what we call the age of accountability, when a child reaches the age were they can choose right from wrong, and when they become responsible for their actions. Because this is the age of accountability, 8 year olds (and over) can choose to be baptised as a member of The Church of Jesus Christ of Latter Day Saints. It was a lovely day surrounded by so many family and friends. My Mum and I were giving talks at her baptism service and so we sat on the stand and could see just how many people were trying to find seats in our little ward! Charlotte loved her day, and it was great seeing her Dad baptise her and all of her Uncles, Grandads and her Dad and 2 family friends stand around her and confirm her a member of the Church and give her the Holy Ghost.


And as if that didn’t make the weekend special enough for our family, little Arthur was blessed today in church. In our church, we don’t christen babies. We wait until they are 8 years old for baptism, and we bless babies and give them a name, and then that child becomes a child of record in the Church. They go through the church programs for the children and hopefully when they reach 8 they will choose to be baptised. They get a nice little blessing too at the time of being officially named and Arthur’s Dad blessed him, and in the circle providing the blessing again was all of his Uncles, both Grandads and two family friends.

Both days had a little gathering afterward to celebrate Charlotte and Arthur on their special days, and it was nice to have friends and family around to show them both they are loved!

Today sees Richard back off to college ready to start back tomorrow, and next week the boys will be back at school and life will be back into normal routine after a great Christmas and New Year and some fun family times! Let’s hope next week is just as enjoyable!

General update, Hospital, Tests, VCD

24 hour pH test

Oh my days! As if the last time I had an oesophageal manometry and 24 hour pH test I said it was nothing! (Last time it actually was fine!) this time…a whole different ball game! I had my first one done in Salford and the nurse in Preston said she had moved from there recently. She said the equipment at Preston is a little more “bulky” 😩😩😩 she was not lying! The oesophageal manometry has the bigger tube and this time she put it in to a certain point (my eyes watered like mad it was so uncomfortable!) and then she taped it in place and made me have sips of water every so often. None of the pulling it out a cm at a time like last time. Thank goodness though, because I managed to find a position to hold my head that stopped me wanting to throw up the whole time and I just took deep breaths and closed my eyes the whole time. Horrible. Stung even worse coming out! 

Then for the pH test she put in a smaller wire that monitors pH near the back of my throat and then at the end of the tube near my stomach. It’s all measuring fine so I’m guessing I don’t have reflux and will hopefully get to stop some of my meds finally! I can feel the wire constantly though! It’s quite sore at the back of my throat and it’s made eating a nightmare. Roll on 9.30am when I can get it out! I’ll be there waiting for the clinic to open I think to get it out in the morning 😂

So yeah…anyone who came across my last blog about the test before they went for there’s and were shocked to find it was worse than I had said…I’m in the same boat now! 😂 seriously though…I’m gonna suggest to Preston they invest in the same stuff as Salford! Although apparently the Preston equipment is better?! I don’t agree 👊🏼

  Roll on getting this out! 

Asthma, General update, Heart problems?!, Hospital, Uncategorized, VCD

My lungs and airways are good…but my heart’s gone crazy?!

It’s been a couple of months since I updated on here I think! I’m terrible at posting on my blog this year, but then things got pretty stressful at the start of the year and real boring and monotonous for the second half…with my health anyway! I think my last post was about all the plans they had to treat my VCD, and then I went to my next appointment and my usual Speech Therapist wasn’t there and they back tracked on everything! So I got another appointment through with my usual Speech Therapist who gets things done, she said she was pretty annoyed they had arranged the last nasoendoscopy for the week she was on holiday, she looked at the results, and said she would speak to the consultant again and get everything back on track with the plans for new tests and treatments!

So…that brings me to pretty recently. I had a clinic appointment for my asthma and they are the people who first found out about my VCD and referred me on for the experts to have their input. Well, the asthma guys decided that maybe my inhalers could have been effecting my VCD all along – they put me on these inhalers when everything flared up over 4 years ago, and aside from a couple of months on a different inhaler because I was seen at a different hospital, I’ve been on the same inhaler for 4 years. And I use it every single day. My asthma was too bad for me ever to even be tempted to just not take my meds. So they thought a while back this could be the problem, and when I had my review most recently, they changed my inhaler! So I lost my cool pink Fostair inhaler and they have taken one of the parts of the inhaler out and put me onto QVAR, with the hopes that the added part in the Fostair was the whole cause of the problems, and maybe changing it might solve everything!

They also wrote to my GP to finally start “slowly increasing” my Amitriptyline dose from 50mg up to 150mg!! So I had to wait a couple of weeks but about 3 or so weeks ago my GP “ever so slowly” increased my dose from 50mg to 100mg. I lost days of my life! Honestly! The first time I took it I slept the whole of the next day! Then I took my evening meds again and was out for the count all over again! It took at least a week but I got myself from total zombie state to napping through the day to actually being able to function in society pretty well!

Right up until last week!

It’s winter, it’s not uncommon to feel run down in November when you have asthma, VCD, or when you just attract as many germs as I do! But hey, so far, I am still doing good! My breathing and VCD has not caused me to be admitted to hospital since September! If I make it into December then I’m sure it will be the longest I’ve managed to control my asthma and VCD for a long time. But I digress!

So a week ago, I picked up a long day shift in work. Hallelujah! I haven’t worked much this month so feeling a little run down was not gonna stop me! I went to work, was happy to see I was in with good people, and I knew the patients, bonus! A little into my day I felt like my heart was racing a bit, I didn’t completely ignore it and people knew my pulse was up but I just took it easy…er than normal and sat down between jobs. My day wasn’t difficult. After 6pm we had a number of jobs to do all at once, when we were behind the curtains with one patient, the next patient was already shouting for us to go help them. So me and one of the loveliest people I’ve worked with got on with it, weaving in and out of curtains, between visitors etc. and I just didn’t feel good at all. I started shaking, my head was pounding, my heart was racing so fast and I couldn’t catch my breath.

I still think I panicked. But hey, I’ve never felt like that in my life. I went into the staff room, openly admitted I didn’t feel good. They checked my obs and my heart rate was 160! For no reason. I agreed to everything anyone suggested and that is so not me. But this was completely alien to me, I’ve had fast heart rates after a tonne of medications, but my breathing is normally so bad I don’t notice so much. This was just odd. The ward put out a Medical Emergency call for me and nurses and doctors quickly came to see to me. I had an ECG, was put on a trolley (the shame!) and wheeled to A&E resus, apologising the whole way there thinking I was just having a panic attack or something. Literally everyone who came in to me, I couldn’t apologise enough, I felt like a time waster, but I didn’t feel great! I could speak in full sentences, even the resus staff agreed this was new to see me talking, cooperating and responding to everything. I had some bloods and was put on a monitor and literally spent the whole night trying to “chill myself out” and keep my heart rate down as low as I could get it. They told me I was waiting for a bed on the Heart Assessment Unit and that I couldn’t move from resus until a bed with heart monitoring was available.

I didn’t sleep much, but I did chill myself out eventually. My heart wasn’t agreeing with relaxing but I tried. We got on top of the massive headache I was getting, the nausea that that was causing, and I stayed in bed most of the time to try and let things settle. By morning, every time I moved my heart was still racing. I could get it into the 90s if I stayed completely still, but if i turned my head to check the monitor or moved my arm to check my phone, my heart was right back up there. It was crazy!

The doctor came to see me in the morning and said if my ECG had settled and my bloods were more normal that I could go home to rest. My ECG showed sinus tachycardia and prolonged QTc but it was more normal than the night before, and my potassium had come up from 2.8 to 3.4. Still not normal but I’d had a lot of potassium overnight and I was set on going home to eat a tonne of bananas! My magnesium was off too but that’s all related. And I was dehydrated still even after 4 litres of fluid IV overnight! I’m not a big drinker but that was crazy!

So I got home, I could feel my heart racing whenever I walked, I could feel it skipping around when I was sitting down or talking. It didn’t feel great but after a couple of days it’s gone. I quickly got fed up of bananas and drinking loads, and the vitamins I’ve started taking demo aren’t making any difference (I’ve got my first ever cold sore and mouth ulcers now too!)

I have an appointment in 2 weeks to go get a 24 hour ECG monitor on so they can see if anything is going on with my heart. The prolonged QTc they said will be caused by my increase in meds for my VCD so I don’t know what will happen there. It won’t be left too long though as I have an oesophageal manometry and 24hour pH test on Monday/Tuesday and a clinic appointment for VCD review two weeks after that. So hey. My VCD has been great *touch every bit of wood possible….and my head for good measure!* but maybe the meds sorting that out aren’t playing well with my heart. If that’s the case then I’m hoping there’s back up plans for VCD treatment and they don’t let it go back to what it was! So for now, 24hr pH monitor, 24hr ECG, back down to 50mg of Amitriptyline (and no sleep for Joey!) and we shall see where that leaves me before Christmas.

I can’t be sad about it though, in 12 days I’ll be an aunty to 4 little beauties when my sister has her fourth and final little bundle of crazy gorgeousness! I’m excited for a boy again! I’m used to baby girls around the family, another crazy quirky nephew is going to just be a tonne of fun!

Live life to the fullest everyone! Count every single one of your blessings, and then count them all again. Be grateful for your abilities, your body and your health…even if things don’t quite work how they’re meant to!

General update, Hospital, Tests, VCD

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!






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

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?

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?!