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As if I’m 30?!

Time to have my yearly reflection on life?! It’s part way between my birthday and my “getting sick anniversary” and I can never remember what day I use to recap the year but now seems as good a time as any!

I have been back in work for over a year now, I’m part time, I seem to have my shifts sorted, and I am doing great! I love being back, I love being surrounded by my friends, I love being back in the place I am most comfortable. I love being able to be myself. I love being able to do a job I consider a huge privilege (most days!) and on the odd day I love being able to moan about the stresses that come with my job. Everyone has bad days, and I love being in work to get them.

I haven’t quite hit my last years record of 10 months hospital free, but I did make it 7 months, so thats a win in my book! I look back at every time I say “this time will be my last” and I sigh at my optimism…I know one admission will eventually be my last and I will get through all of this, but hey, lets be realistic! I’m going to aim to beat my 7 month streak this year. It can be done, I’m not jinxing myself, but I’ll see where I am this time next year!

I was a little disappointed this last month that I wasn’t able to go for treatment I was referred for. I was hoping I would be able to get botox in my vocal cords in June, but things weren’t meant to be and my referral didn’t go through in time for that plan to go ahead. I do have a follow up appointment in August at Preston and then another appointment in Liverpool not long after that so I will see what will come of those and what my treatment plan and goals are for the coming months.

The last 12 months have been great fun. I haven’t had quite the amount of adventures as I did the year I was off work, but I’ve made sure I’ve enjoyed myself! I travelled to the south of France recently with friends and burnt myself to a crisp in one day! I laughed so much in 3 days. Roll on the next holiday! I finally went back to the caravan to relax! I won my first game of Catan against the mother and brother. I went to Harry Potter studios twice! Once with my nephew Oliver and then with my niece Charlotte. I’ve taken tonnes of photos and know I’ll be taking a tonne more in the next 12 months! I turned 30! I have been to the theatre, I had afternoon tea! I baked cakes, and smashed cakes. I experienced single parenthood of 4 children for 4 days while my sister and brother in law went to Jamaica! I’m not cut out for 4 kids! I bought my first new car! I tried my hand at making churros…I’m not so good at it!

We’ve had hard times too as a family, we lost my Nan last year and also Adam. It’s been hard on us as a family, but it has brought us closer together, and strengthened our love and support for each other. We have learned who we can rely on, and learned not to take anything for granted. I’m more willing to live in the moment in life now, to take chances and not have regrets, to make memories with my family, to take more pictures of people I love. Every year has its good times and bad, the last year was probably one of the hardest I’ve faced, and I know that there will be more hard times in the future. But one thing is for sure, I am loved, I have friends and family around me who I love more than anything, and I will keep making memories and having adventures with them.

Here’s to the next 12 months of life. I hope it is full of love, family and friends. Because at the end of the day, that’s what matters most.

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Lesson learned…

Result for whether or not I learned that it is possible for me to survive two weeks of night shifts: Inconclusive

So I didn’t actually have to do the second week of nights! The ward was really short staffed on days so when I went in to work for my one day shift before my nights started they asked could I swap to days to try and even out the playing field. Of course I jumped at the chance! Who wouldn’t?! So no, I didn’t find out if it is possible for me to survive two weeks of nights.

I did learn that my VCD won’t play fair if I’m stressed though. I’ve definitely had a jam packed, crazy couple of weeks. There’s been plenty of fun had, but a fair amount of stress too. The result of that lesson was a 5 day stay in hospital following a MET call on my ward when I was in work and a 24 hour stay in ITU. Completely unexpected. I normally start feeling run down, or having little mini episodes for a while leading up to a bad spell. This time 0 symptoms to 100% sick 10 times faster than normal. And once I felt like I’d had enough it didn’t slow down. Thought I was pretty much aware of what was going on, but I’m finding out that the 20 minutes I am aware of is only a small part of the 2 hour drama that unravelled at work. Feeling extra grateful for the people that were on shift and helped me out or helped out others so they could help me. They’ll probably never forgive me, I’m gonna have to start baking cakes to take to work regularly to keep people sweet!!

I think it may have finally sunk in though that I need to stop and sort out my VCD whenever it starts to flare up, even just the little ones that I can sort “on the go”. I should probably take 2 minutes to stop and sort myself out, rather than risk carrying on and taking 2 weeks to recover instead. A hard pill to swallow when you’re as stubborn as I am. But I’m working on listening to people, especially if they know me as well as I think I know my VCD. They can see and hear what is going on, they pretend I can fool them, but I know that they’re just as clued up about things as I am. Time to stop being a control freak?! Maybe…

I thought I had gotten the hang of it all, and that I knew my limits of how far I can go, but then life throws in a curve ball, things happen way faster than normal and sometimes you land yourself on ITU wondering what on earth happened and how it got so far so fast.

So I’m gonna draw a line under that admission, lessons learned, I’ll be more weary now but hopefully never need to use the lessons because this is the time that it never happens again!!!….?

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What a week!

It has been a long week!

I started off the week packing up my car and travelling to Waddecar Scout Camp for 4 days with the youth from Church. I spent 4 sleep deprived days handing out plasters, taking photos, singing songs, reading Scriptures, volunteering for devotionals (Sorry Becca!), flossing, eating way more than I should have, teaching alternative ideas for first aid, laughing so much I almost couldn’t breathe, and just really enjoying being surrounded by like minded people, making new friendships and strengthening old ones.

The second half of the week was straight back to work…nights! Enough said! And when I wasn’t working I was trying to cram in all the sleep I could.

 

I’ve learned the best lessons this week though.

1/ Fluke or not, I had a killer aim when we got to shoot rifles. Became a really persuasive tool when I wanted people to go to sleep because I was tired.

2/ No matter how many times I try to climb 60 steep steps in one go, I’m never gonna be able to do it. My legs will still feel like they’re on fire by the 30th step, my lungs will feel like they’re about to explode and my ears will be ringing before I get to the top.

3/ Having to climb 60 steps every morning (and sometimes a whole lot more times through the day) makes it easier to be able to walk up 28 normal steps on my way out of work.

4/ No matter what, even when you think your car is completely full to the brim, and there won’t be any room to breathe, never mind drive, you’ll always be able to squeeze in a forgotten suitcase, sleeping bag and pair of trainers!

5/ When your car is that full, as you start to decant people and belongings out of the car, it will still look so full you couldn’t possibly have fit all that in there.

6/ When a wasp flies into a packed car, I will leave everyone else behind while I run to safety and leave them trapped, then sit back and laugh so hard I would never be useful to them anyway.

7/ Not all Americans can make American pancakes 😉 It’s probably because they’re really just scotch pancakes, and we probably had them first, they just stole the idea.

8/ If I stay up til 3.30am, I will not be nice the following day, even to children.

9/ It is possible to work a night shift after so little sleep.

10/ It is possible to feel completely undervalued and overwhelming loved at one time. And the feeling loved part wins. You’ll move on from being mad and forget about it, but you won’t ever forget when people go the extra 10,000 miles for you.

11/ I’ve been back at work 11 full weeks, and every time I think I might have made a mistake and that going back to work full time wasn’t all I had it cracked up to be, someone will always do something that makes me think “Nope, I’m good here. This is why I came back”.

12/ The people you love and who love you in return should always be your top priority. Friends and family are everything in life, don’t miss an opportunity to tell them that.

 

I’m back on nights next week, hoping the only lesson I learn is that it is possible for me to survive two weeks of night shifts!!

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5 years…

5 years, 35 admissions, 3 hospitals, 7 NIV unit stays, 6 HDU admissions and 4 stints on ITU since my first admission with my asthma/VCD. What a rollercoaster!

Last years big change was that I quit my job to see if it would have a dramatic improvement on my health. It kind of worked, I still got sick, but I stayed home in bed and avoided hospital a lot more than I usually did!

This years big change??? I got my job back 😀 I have never been so happy to go to work in my life. Being back and seeing people more regularly has brought it back how much I hated leaving, and I remember how great I had life getting my dream job on HDU straight out of uni. I work with some of the best people. I absolutely love being back, and I certainly won’t be taking it for granted.

I guess the best change this past year has been how long I managed to stay hospital free. It was about 10 months with no asthma/VCD hospital admissions. As soon as I quit my job last May, my treatment plans changed really quickly, and the change in my health was noticeable pretty early on. I do think working bank shifts had an effect on my health too, as I said earlier, if I was sick I just didn’t work. I took time off, and even though I was still really unwell at times, I guess staying in bed is a much better way to get better than dragging myself out of bed to carry on with life.

That said, in the weirdest way, work has helped me stay healthy the last few weeks for sure! This crazy hot weather, the really high pollen counts, and the fires that have been going on around the area haven’t effected me as much as they should have. Getting up and being in work early away from the fires, the heat, the pollen, and staying there until the day starts to cool off, and then heading home and staying indoors has really helped me. I notice on the drive home from work, with the windows down (UDiv doesn’t have air con) that I start sneezing as I get closer to home. I notice on my days off if I stay out in the sun, or I’m driving around near home, that it definitely has an effect on how I feel.

So being 4 weeks back into work and being admitted for 3 days isn’t going to knock me, I don’t blame working for this bump in the road, and I’m pretty happy that I will beat my winning streak of 10 months this time. I can’t believe last year I was saying 8 weeks hospital free was a major achievement, and 12 months later it is 10 months! Crazy. Now imagine how exciting it would be if I get to 4th July 2019 and have no more admissions?! It can be done…watch this space!

In the last 12 months I have been to Rome, went camping, a weekend in Haven, took so many photos, British pageant take 2, FSY Health counsellor, caravan trips, Jessica’s pool party, Clay shooting, Baked cakes, threw a Dr Seuss baby shower, Friends Bridal shower, saw one of my best friends get engaged, was Maid of Honour at her wedding, became an Aunty to 4 and have loved seeing Arthur grow and the other kiddies love him more and more, Scotland trip, Stonehenge, London Temple, Harry Potter weekend, Charlotte’s baptism, got my job back, was at a solemn assembly when we sustained our new Prophet, got a new car, got a crazy new puppy and so much more!

It’s been a great 12 months, and I’ve not taken them for granted. It was difficult at times, and the best of fun at others. I feel like I’ve had some massive highs this past year mixed in with some major stress, some life changing decisions, and some wonderful memories. Life is never plain sailing but I am so grateful for the life I have, for the experiences I get to have, for the wonderful friends and family I am blessed with. And I’m so grateful for improved health and a second shot at my dream job.

2018/2019 will be no different I’m sure!

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Everything changes!

My life has been change after change after change lately. I am not the biggest fan of change, but some things have been pretty exciting, others not so good. We will see where all of these changes take me!

I can’t believe I have one week left until I go back to full time employment. It has been over a year since I have had regular permanent employment, and even longer than that since my employment has been full time. Getting my new (old) job is one of the changes I am probably most looking forward to. This time last year I was facing what I thought was one of my biggest challenges. I had made the decision to leave full time employment and work around my own availability. Pretty quickly I not only settled into the challenge, but I had convinced myself that I was more than just surviving, I had taken on the challenge and was winning. I loved the idea that I wouldn’t ever have to miss anything I wanted to do ever again. If I had something on, I didn’t go to work. If I wasn’t well, I cancelled my shifts, I took some time for me and I recovered and got back to work. It was definitely the right decision for me in the end.

It wasn’t all rosey, it did come with it’s fair share of challenges. The weeks when I knew I really needed work, and there was just none available, were not the easiest to endure. The times I took off to stay well meant I wasn’t paid for that time off, I had my savings to fall back on but it was still stressful willing myself to get better fast enough to return to work and make sure I got some pay every single month. I also knew that this wasn’t a permanent fix. I always knew I would either have to make the jump and join an agency or try and get myself back to work. Believe it or not but I absolutely hate meeting new people. Sometimes I can do it, but I know I am a little stand offish, I don’t like not knowing people, and asking for help because I don’t know the surroundings, the way things run, or the people is hard work! Agency work might have been a great opportunity, but I wanted to have some security trying out full time work again.

Thankfully at the time I realised I needed to start thinking about returning to work, things started to “fall into place”. My health was improving, my sickness record had almost reset, my medical teams agreed things were more manageable, and my old job just happened to go back up on NHS jobs. Far too many coincidences all at once to believe that it was not all perfectly timed for a reason.

I’m looking forward to being the new girl again! I am going to use the phrase “sorry I’m new here” wayyyyyy more than people can imagine is possible, and I’m going to enjoy being surrounded by friends and familiarity whist I try to find my feet in the working world again. I honestly think it will work out, as I said, too many “coincidences” happened at once for me to not follow this path. It’s not my own making that has got me here. Im anxious about going back to work, I’d be a fool not to be. So if I turn into a recluse for a few weeks it’s because I’m saving every last drop of energy to try and get this part of my life back on track, and to make this work. If everything timed out perfect just to prove to me that I can’t do this, then I know it will be time to move on. But lets hope it worked out so that I can get on with what I love.

I’m half looking forward to missing out on a couple of things again because “sorry I have to work”. It has been so long since I have said that! And I bet the novelty will wear off real fast. I’ve thrown myself into some things the last 12 months because I knew I could, I could be there 100% of the time, I could keep up with what was going on, and it was good for me. But I’m very-nearly-almost-soon-to-be 29 and getting pieces of my life back on track in time for a new year of life makes almost being 30 seem way better!

I definitely couldn’t have survived the last 12/13 months without my family, friends, leaders, people who I have turned to for support. Thanks for remembering me, for including me and for letting me know that even though my life had changed, my friends hadn’t. I’ve enjoyed some great times in the last year because of the amazing people I have in my life. I know that the changes I’m facing now that aren’t so good, that don’t seem like they are for my benefit or for my good, the changes I know will be sad for myself and for others, I know I can face them with the love and support of the most amazing family and the best of friends.

Hopefully I’ll still have time to carry on with hobbies I have grown to love recently. I have loved the opportunity to pursue new things, to take some photos, to bake a few cakes again, and to try my hand at some other things to pass my time. I guess after my initial reclusive months starting back at work, I will eventually find a balance that keeps me sane, helps me keep up all the things I love, and helps me stay healthy and happy with wherever life decides to take me.

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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!