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Dear best friend

Dear Spud,

 

As you’re lying beside me snoring and making dodgy sleepy noises (I just poked you to check you are breathing by the way), It reminds me how lucky I am to have you.  It’s not easy being friends with me. I have a lot of baggage. But when you have as much going on in your life and you’re doing as much as you do for me is one of those things that is just amazing.

On the 11th March last year you posted on a support group we both use saying you had been transferred to my local hospital and I asked if you wanted a visitor.  You’d been quite poorly yourself and were quite far from home. I remember bringing you smoothies and juice, a colouring book and markers and a small cuddly frog (there may have been other things, but I can only remember those and you turning down a bacon sarnie on the basis you’re a rabbit). It was the beginnings of a friendship that I hope I’ll never lose. I didn’t expect to speak to you again for a bit when you were discharged because you’d been really poorly. Although I was worried about you, I thought you needed some space. But you messaged me when I posted a message on Facebook saying I was having a rubbish day and felt poop, both mentally and physically. This was only about 3 days after you had been discharged, so as much as I was pleased you’d messaged me, I was totally surprised. But it was yet another reason why I think you’re fantastic. You spent ages talking to me that night and I was able to go to bed and not have a total meltdown over something, that looking back, probably wasn’t actually that big a deal. But a year down the line, I’ve totally lost count of the amount of times you’ve done the same, sometimes even staying up until silly o’clock with me.

I remember getting the train to come see you about 3 weeks later and we spent hours just sitting talking and putting the world to rights. We both talked about stuff that I’d never even spoken to my lifelong friends about. But I trusted you as if I’d always known you. I think because we’ve both been through so much and have similar health problems, we just got each other. You understood what goes through my head when I get frustrated about the restrictions my asthma and joints place on my life. Very few people truly understand that, and it was so good to finally have someone that I didn’t need to try and explain myself to when I didn’t have the energy to do something that most people would expect me to be able to do without hesitation. And you knew about “The Spoon Theory”. Bonus. I know there’s other people around me to talk to. And I feel truly grateful to have them. But I don’t know. You just understand so much more. You understand the fear of ABG stabs in A&E. The fear of cannulas in certain places and the fact that sometimes I just want to stay in bed and not move because I just don’t have the energy.

In January this year, my mental health crashed in a big way. I overdid it with revision for uni, staying up until 2/3/4am and getting up about 8am again for about a week, it was my stepdad’s 2nd anniversary and things were going downhill with my chest, fast. This triggered a breakdown for me, and you were the first person who picked up on it and acted on it. You helped talk me down when I was psychotic, and drove over and dragged me to the GP about it when my exams finished. I don’t think I’d have had the guts to go on my own, and although my flatmate would’ve taken me eventually, I didn’t tell her how bad things had gotten and I don’t think she’d have gotten the message across in the same way. But you started the ball rolling in getting me the proper help I needed. You stayed with me for about 2 weeks in total, and every night when I was having a nightmare, you’d wake me up, help me calm down and then get back to sleep again. When I was absolutely terrified of something most people would consider stupid, you didn’t patronise me or make me feel small for it. You took me back to the GP again and again until they finally started doing something. I went through a phase where I seriously struggled to take any of my medication, which when you have multiple medical problems, isn’t really a sustainable scenario. You helped me get to a point where I was able to take most of them, and when I went into hospital with my chest, you made sure they knew I was struggling.

When I had surgery last month, you came to stay. You got up at 7am to be at the hospital with me before they brought me down to theatres because you knew how scared I was. You demanded they let you into recovery afterwards despite the fact they don’t normally allow it. When the anaesthetist changed everything they had promised me the night before the operation, I was 90% close to telling them they weren’t doing the operation, signing out and going home. I was scared beyond belief. But between you and Nugget, you got me to a place that I was able to get some sleep and wasn’t completely terrified. I’d let them operate. You made sure that the staff knew I was scared and have done so many times beforehand.

Things have been pretty rubbish in my life lately, but things haven’t exactly been easy for you either. You’ve had a lot to deal with in terms of your own physical and mental health, and have juggled a job, lots of health problems and coming over to see me at least once every 2 weeks since January. Most people wouldn’t have done the amount you have for me, purely because you have so much in your own life to deal with. But you stuck by me. And as much as I’ve told you it over and over again, I don’t think you truly understand just how much this means to me. Life’s difficult when you have a chronic illness. Looking after yourself takes up so much energy, but when you add in looking after other people, it increases the energy need tenfold. But you do it and don’t moan about it or make me feel bad for asking.

I feel safe with you around. Things aren’t as scary and I know that when I have a nightmare, panic attack or become psychotic, you will help as much as you can and if you can’t help at the time, will make sure Nugget knows I’m struggling. I know lately you’ve had to make some pretty tough decisions for me and I know you think I hate you for making those decisions, but things couldn’t be further from the truth. I’ve been the person having to make tough decisions that you’re not sure are the right ones, but I promise you from the bottom of my heart, I’m not angry and I’m not bitter. And I will never, ever hate you for making those decisions. If anything, I’m thankful that you made them. Because as much as it might anger me in the short term, in the long term I know it’s the right thing.

So thank you. Thank you for sitting with me in A&E. Thank you for making me be sensible when I want to sleep and should be taking steroids and drinking Lucozade (and stabbing me with hydro when I throw a strop and don’t take my steroids). Thank you for staying up until 2am and talking me through a psychotic episode. Thank you for being able to explain things to my GP when I can’t. But most of all, thank you for being someone I can call my best friend, who I can pour my heart out to and will never, ever judge me.

Love you Spud.

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Going to university.

So, I can finally say I’m starting university! I’m going to the University of Salford in September to study Biomedical Science. I just need to send off my birth certificate to the student finance people, finish my DSA application and it should be all sorted!

I don’t know whether I’m excited or terrified to be honest. It’s one of those things that I’ve been waiting so long for now that it just seemed like it was never going to happen, and now that it’s here, it’s scaring the crap out of me. So, so much can go wrong as far as my health is concerned. I’m scared that my chest is going to cause havoc and I’m not going to be able to keep up. The university have been great and have put a really detailed support plan in place for me, and are being really accommodating, but it’s still daunting. Uni is hard enough for healthy people, but unfortunately I have to accept that I’m not healthy.

On the other hand, this is something I’ve been looking forward to for so long that I just want something new and big to sink my teeth into. To give me a proper reason to get out of bed in the mornings and a reason to want to fight when things are at their worst. This is a course that I’m really interested in, and it will hopefully lead on to big things for me. While I know it’s a long shot of it happening, I’d love to be able to go on and do medicine in a few years. But if I don’t, it won’t be the end of the world because I’ll still be able to do a job I love and hopefully make a difference to someones life in a hidden manner (I never was one for a big fuss). While I wanted to do nursing more than anything, I have to realise that it’s just not going to be something I can safely do at the minute. But who knows, it might be something that I can go on to do in a few years if I decide Biomed isn’t for me.

Although I’m in hospital at the minute, I’m doing a lot better than I was (well duh, I’m blogging) and am feeling better. But I can’t help but feel like this is a never ending saga in my life. Big asthma attack, admission for a week, home for a month and repeat. Although my consultant is trying to get me to regular elective admissions, he won’t give in to 4 weekly ones instead of five which I’ll never manage. Maybe I need to go all the angry Irish on him. We shall see!

But for now, University, here I come!

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Getting off the good stuff.

So, Roughly 9 months to the day since my hip replacement, I took off my last patch.

Since 2009 there’s not been a period where I’ve not been on some form of opiate, be it tablet/patch/liquid. I decided pretty soon after I had my right hip replaced last year that as soon as I could, I was going to get off the opiates. By September last year i was off long acting morphine tablets, and it’s taken me since then to get off patches. Granted I’ve dislocated my shoulder and had major issues with some other joints in between, and it’s a lot harder to reduce patches because the doses linger in your system for longer so once you take off one patch, you still technically get that dose for about 12 hours afterwards. You also can only reduce them in bigger drops. Fentanyl patches come in 100, 75, 50, 25 and 12mcg/hr patches. So you have to do it much slower than you do with MST/Zomorph which I did in drops of ten a week/ten days.

I don’t think people realise just how much strong painkillers can mess with so many of your day to day activities. I didn’t realise until I was off Zomorph just how tired it had made me. I noticed I was able to stay more alert during the day and didn’t need to nap for as long as I had or as often. I decided in March though that the time was right to start reducing my patch. And although it took me longer than anticipated, it was amazing when I took my last patch off. This time last year I was on 100mcg/hr of fentanyl, 60mg of Zomorph twice a day and was taking anything between 5-20mgs of oramorph every 4 hours. It soon adds up and makes you feel rather dopey after a while! Now I’m taking between 10-20mg of oramorph at night and if I’m in pain during the day. It’s nothing in comparison and it’s a lot easier to get off oramorph than long acting painkillers because they don’t linger in your body as long.

I’m chuffed pink that I’ve finally managed it though, it’s a big deal for me and it’s taken me a long time and a lot of pain to get to this point.

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Christmas.

So I’ve not been a good blogger recently, and have let my blog slide a bit. But I do have a pretty good reason. I think anyway.

It’s been a manic few months. When I last updated in October things were looking pretty good in my life despite a lot of things going on and I was quite optimistic about things. Since then though, there’s been a few setbacks both with my own health, and Cookies. Since then though I’ve been back home twice. Once in November for my Nanny’s 70th birthday and then for Christmas. But along with the trips home came 2 different viruses that caused havoc with my chest, Cookie ending up on the verge of being resectioned and just a lot of things that have taken some getting over.

I went home for Nanny’s 70th birthday in November. She hadn’t a clue I was coming home and we had all been winding her up giving her reasons as to why I wasn’t coming home. We toyed with her a bit by putting up facebook status’s that only she could see saying things like I was unwell, that I was up to my eyes with things and basically trying to put her off my scent. But I’d blocked her from seeing my actual status’s saying I was coming home and was at the airport etc. She had said that the only thing she wanted for her birthday was that we would all be home for it, so we had been mean by making her think it wouldn’t happen! Little did she know! But as part of her Christmas/birthday present we had a photoshoot done with all the grandkids and got it printed for her. There’s 8 of us and it’s the first time we’ve all been together. It was a really symbolic day for me. I’m the eldest in the family, and there’s 5 years between me and Jessica, who is the next eldest. It was brilliant to see all my cousins. I hadn’t met my youngest cousin, Leah, so I really enjoyed meeting her. It was the first time I’d been home since my operation in July, so it was the first time the family had seen me without crutches. It meant I was able to run after the kids and throw them in the air and do airplanes with them. It really is the little things that make you realise just how lucky you are in life. For so long I couldn’t be the person I wanted to be because of the stupid hips, but now I can finally enjoy myself and my cousins.  Unfortunately though, I caught some kind of bug on the way home and ended up dosed to the eyeballs with the cold, which inevitably went straight to my chest and I ended up with pneumonia. That A&E trip was one of the ones that has left an imprint on me, and not for a good reason.

When you have brittle asthma, you tend to get treated a bit differently in A&E when you present with breathing difficulties. You’re generally brought into the resuscitation room (resus) and hooked up to monitors. Within about 10 minutes you’ve got doctors all around you, a neb going and several different people fighting to get some IV access. This time, I had the misfortune of bumping into a nurse in there that really doesn’t like me, and has told me it on several occasions. The best line she has come out with was “75% of R’s (consultant) patients have more psychological problems than physiological ones” or when I asked her if she had a problem with me got told “Our system has a note on it for all the patients who come a lot. We know when you’ve been to lots of different hospitals and when you are considered attention seeking.” Up until recently the problems I had with her though were just the things she said to me, but on this occasion it was a lot more. When I got to A&E, the triage nurse sent me through to resus. Ann (names protected etc) decided that I didn’t need to be in resus because I was hyperventilating and tried to get me moved to minors. Luckily whoever was in minors had sense and told her in no uncertain terms that it wasn’t happening. This was only the start of my problems that night. She put me in the very end bay in resus and ignored me for an hour. I jest you not. I saw no doctor, had no observations done, didn’t get a neb, anything. She would pop her head around the screen occasionally and tell me to slow my breathing down because I was hyperventilating and that I was making myself poorly. When I did finally get a neb written up by a doctor who passed me and saw how unwell I was becoming, she refused to give it to me because she believed all I needed was a paper bag. Shortly after this she moved out of resus and I was treated by a different nurse who immediately rang the chest team and got the A&E consultant to see me and I had gases done. In the hour that I had been waiting, my gases had become appalling. As it is my gases tend to be quite bad when I’m admitted, but when I get there and they start pumping me full of stuff, they start to sort themselves out. But because I’d been left for so long, they were really worried and had ICU come and assess me. It took 3x the normal amount of medications to stabilise me again and I was actually starting to get scared. That doesn’t happen often. Eventually I did start to stabilise enough to be moved to the wards on a monitored bed and saw my consultant that evening. I told him about my problems with this nurse, and from what he said, I’m not the first person to have had problems with her. Apparently the new psychologist on the chest team is going to be working with the A&E staff to improve the attitudes towards asthma. As a result of the way I was treated by that nurse, I decided that I was no longer going to attend that A&E because I couldn’t trust her to not do the same again. I was so much more poorly than I was when I arrived and it scared me. But it’s never good when as a severe asthmatic who does have to go to A&E a lot, that you are actually scared to go to A&E because you believe it will actually make you worse. I saw R in clinic a few weeks later and we decided one of the best ways to deal with the situation in the interim was to make me a care plan so that when I get to A&E, they have to treat me a specific way, and if that plan isn’t followed then he can get involved. When I attended A&E on NYE for an infective exacerbation of my asthma, that piece of paper was my saving grace. Granted that Ann* wasn’t there, but I was still seen and treated extremely well and quickly.

Which brings me on to Christmas! I was at home for Christmas this year. I was in Tenerife last year, so it was a bit of a different setting! But it was the first Christmas in five years that my grandparents were home for it. They have an apartment in Tenerife so spend a good part of the winter out there so it was lovely to have them home this year. While I was home I went up to Belfast to see some family and friends. I got to see Kathleen who is like my adopted Grandmother, (My grandma (dads mum) was Kathleen’s Matron of Honour at her wedding, and her husband and my granddad were best friends) Lorraine who I’ve known for as long as I can remember, Aunt Peggy, who was granddads only sister. It was extremely important that I got to see her though because she isn’t well and we don’t think she’s got a lot longer to live. It was an extremely difficult visit, but I made her smile a bit and I feel at peace now with her should the worst happen. I also saw my adopted big brother, Chris. I’ve probably already rambled somewhere else about Chris, so I’m not going to go into details, but he’s my big brother, best friend and awesome aspie! I got thoroughly spoilt this year, but to be honest, It was much more fun watching mum and TJ opening their presents. For the past few years we’ve not really been able to know what the best things to get mum are, but I really put thought into it this year and knew what she wanted. But she also had a stocking this year for the first time. When we were little babies, my aunt in Canada made us all personalised stockings so they’ve always been up at Christmas. But this year even the dog had one and mum didn’t. So we decided it wasn’t very fair that we all had stockings and mum didn’t. So we got one that you put a picture into of the person. I didn’t want to just print out a picture of mum and stick it in, that’s boring! So I got mum to show me how to use her sewing machine, and spent hours and hours learning how to use it. I stitched 4 pieces of fabric together and then used the glue gun to stick a piece of cardboard onto it, and then her picture onto that. That meant more to her than just sticking the picture in anyway, because she knows how long it took me to do it, so that was cool to be able to do. But we put loads of nice stuff into it like ribbons, lush stuff, chocolate and little bits and bobs. Mum got spoilt this year and it was fantastic to be able to do it.  This was a good christmas for me though, because I got to bring Billy home to meet the family. He got the ferry over on the 27th, so I went down to Dublin to pick him up and get him safely back to Monaghan. Unfortunately by this stage though I was loaded with yet another cold and felt like hell, but it was worth it to get to see Billy. He got to meet most of my family and thankfully he got on well with them all. It’s hard not to like him though! Unfortunately while he was over I was completely loaded with the cold and felt like crap for most of it, but I did try and get out of the house with him a bit. But he was really nice about it and didn’t mind just sitting in front of the fire with me. We got the ferry back on NYE because it was going to work out stupidly expensive to fly so we got the ferry to Holyhead, then I got the train back to Manchester via Chester and one of t’other stations in Manch. That was a difficult journey. I was feeling absolutely horrific and knew my chest was going to throw one at any moment. Billy got the train to his parents in Wales to help out at the bar so I was on my own which was not fun. As soon as i got home, I threw my PJ’s, phone charger and tablet into my bag and called an ambulance. Considering it was NYE, the ambulance was out in 10 mins and I was in resus in A&E being sorted within an hour of me calling it. Don’t get me wrong, I know that the hospitals are up shit creek at the minute, but I can’t fault the care I received! So I spent yet another NYE in hospital, and spent a few days on IV antibugs and Aminophylline. Still not feeling 100%, but definitely feeling better than I was! On top of that my consultant has finally agreed to give me some decent IV access and I’m having a PICC line put in.

Am quite optimistic about this year. I’m starting uni in September, I’m mobile and able to do so much more and I’ve got a fantastic boyfriend and best friend. Most people make New Years Resolutions, but I don’t understand why they have to be ones that start only on new year. And it’s not so much a resolution as just common sense for a lot of things. So I have aims that I want to achieve, and it’s not something I have a lot of choice in. It’s things that if I want to get better in myself, I have to do. So this year I want to loose 25kg, start uni, get my elective admissions sorted and get to the gym more.

So dear followers (if anyone actually reads this!), Here’s to 2015!

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Done and dusted.

Well, on the 16th July, I became the proud owner of a new left hip. To say it was tough would be an understatement(I will never see why people use ketamine for recreational purposes…) but I’m finally off crutches now, 4 weeks and 5 days after the op. It’s amazing. I’ve been on crutches permantly for over 4 years and have had my life severely limited by that for so long. It’s a great feeling to be able to walk out the front door and not need my crutch with me. I can do so much more stuff and am planning things that I’ve been waiting to be able to do. I’ve got a much more positive outlook on things now, and it’s fantastic to see the difference it’s making to my overall health. The day of my op I was standing up and using the commode and refusing to use a bedpan. Well, they made me use it one time, after that fiasco I decided it was more painful using a bedpan than pulling myself out of bed! But I’m working hard and proving everyone wrong. I can do it!

post op, day 1

I had my annual chronic disease review this morning, which was my asthma and diabetic review, and it couldn’t have gone better. I have no sign of problems with my feet, I’ve lost weight, my diabetic bloods are completely perfect and I got my personal best peak flow. All of these little things have just given me such a boost, and I’m currently riding the natural high. I’ve also finally started to reduce my painkillers, which is a huge deal. I’ve been on a massive amount of opiates for about 3 years now, and it’s taken a toll on my body. I’m always sleepy, have tummy problems and you just have a general feeling of groggyness. So the aim is to be completely off opiates by Christmas. It will be my christmas present to myself hopefully! I’m aiming to be off my long acting morphine by the end of Sept/Middle of October depending on how things go, and then I’ll be reducing my patch after that.

We also joined a gym last week, and had our first session and induction on Saturday. Both myself and Cookie have said we need to get fitter, and it’s a good way to loose weight so we’re going to try and go every few days and see how we get on. I managed 5 mins on the bike and 2mins on the cross trainer aswell as resistance work. So it’s working up from there and getting my strength and stamina back. I will get my life back in order, I’ve got the rest of my life to live for. 

Apart from that, there’s nothing huge happening in my life. I’m completely broke at the minute, so am not planning on leaving the house for the next few days. I’m meant to be in Grantham because Cookie has gone on holiday to Turkey with her family for a week and I’m not really meant to be on my own. But in true Vicky fashion I have a tummy bug, so I can’t risk my friends in Grantham getting it. I’m planning on going on Wednesday, but that’s subject to lungs/tummy etc.

I’ve given up on doing project365. I was spending too much time taking pictures of my bedroom and hospital and I was getting bored of it. Hopefully once I’m a bit more mobile and out and about I will be able to start it again, but for now it’s on hold.

Hope everyone’s doing good, and if you’re not, I send good vibes your way 🙂

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Growing up.

I’m back in Ireland for a week. It was very much hit and miss as to whether I would get over. I ended up in hospital in SVT 3 days before I was due to fly, and only got out on Wednesday, which was the day I was due to fly. Luckily I was able to rebook it, and flew on Friday instead.

I flew over primarily for my little brother’s confirmation. The confirmation is one of the seven sacraments and it’s meant to be you as a person accepting the responsibilities your parents swore to undertake at your baptism. Being raised as a catholic, do good by the church and believe in your faith etc, so it’s signifying you growing up. You make your confirmation around the age of 12 in your last year of primary school when you are preparing to go into secondary school. I made mine exactly 10 years to the day before TJ, and it was a major sense of dejå vue. When I made mine, everything in our family was right. James’s drinking wasn’t a huge problem, there was a big party with a bouncy castle, big buffet, friends and the whole family, including James’ family, mum’s and dad came. This time it was Mum, TJ and me at KFC. I’m sure if he had wanted a big thing, mum would’ve made it happen, but it just shows you how things have changed in 10 years.

My little brother is growing into a good looking, smart young lad. He’s been through hell in the past year but he’s so resilient and I admire so much about him. He makes me smile on a daily basis, and serves as a reminder to me as to why I fight to stay well. He’s such a good kid, and would do anything for anyone. He is sensitive, caring and kind, and his idea of enjoying himself is sitting watching a DVD with his family, not going out drinking like so many kids. You ask him what he wants to do with his life, and he will tell you he wants to look after his family.

I’m so proud of the lad my little brother is becoming, and I hope that over the next ten years he continues to bloom into the best man he could be.

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University!

Well finally, after what seems like an eternity of shite posts, I finally have some good news to talk about. Late last year, I put my application into UCAS to study Health Science. I applied to 5 different universities, and they all rejected me. To have five uni’s just reject you straight off, without an interview or a chance, was heart breaking. It made me feel like going back to the Louis and flogging myself to get through the Leaving Cert was completely pointless and I was gutted.

But when I was in Kira’s after my admission to ICU in Lincoln, I really was in a very low place. I felt like complete shit mentally and physically and honestly felt like there was no point in even getting out of bed anymore. But I had a failsafe. I’d applied to UCAS Extra. To anyone who doesn’t know, UCAS Extra is a system you can use if you’ve been rejected or declined all your choices. You get to choose another choice and hope to God that the uni’s like you enough to take pity on you and except it. But I got an offer. And it was the most amazing feeling. Just when things seem completely low and you really just want to hide under your duvet for the rest of eternity, to have something like that come up is a breath of fresh air. I got offered a place to study Biomedical Science in a university quite near to me. I’m so excited to be even given a chance. I know I’m probably going to have to defer it because of my hip replacement (more on that later), but to even know that the offer is there, and that I can use it when I’m ready is fantastic.

I will beat asthma. I will beat avascular necrosis. Fuck the asthma, I’m going to get my life back.