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Comparisons

Two blogs in two days, blimey.

I’ve been thinking a lot today about how my health and treatment compares to friends. I think one of the things I need to work on is not comparing my health and treatments to others.

I’m fortunate in that I have a fantastic GP, chest consultant and support network. While it’s going to take a long time to be seen by psychology, I’ve got a fantastic GP who wouldn’t hesitate to contact my psychiatrist in an instant if he was worried about me. I spent a year having my head managed by my GP and he was able to start so much and sort so many things out for me that most GPs wouldn’t be willing to do. And I still moan. And I still get upset when other people get better treatment than me. And it’s making me so fucking angry with myself because I know that I do it, and I know that it upsets my friends. The fact that I can walk into a GP appointment and straight away they’ll increase my anti-psychotics, or will offer me any support they can is quite amazing. And I don’t think I realise just how lucky I am. Manchester may have the worst mental health care in the country, but once I was in the system, they’ve been mostly helpful with my care.  My GP has gone above and beyond for me, and he’s the only reason I haven’t left my current GP practice as the other GPs and receptionists are all arseholes. But Dr N has been amazing and I couldn’t ask for a more understanding, caring GP.

I have a chest consultant who has written me a fantastic letter for A&E, given me a PICC line pretty much constantly for about 3 years now and I still moan when I have to have a cannula, or don’t get a Port-a-Cath. Yet my best friend has to almost prove how poorly she is to get IV Aminophylline when she’s poorly and has had times in A&E where it’s taken ~20 attempts to get a cannula, and then they gave up and put a central line in. Whereas I got a PICC line the minute access started becoming a minute issue. It’s beyond the levels of fair. I had a new PICC line put in today, and ended up breaking down in tears in the Interventional Radiology theatres because it was so unfair that I was getting a PICC and Spud doesn’t. Despite being under the care of the same consultant. Don’t get me wrong, things can be shit, but when they’re shit I generally get sorted fairly quickly and don’t have to fight people for care as far as my physical health is concerned. I feel like a pretty shitty human to be honest. I know it’s not my fault where I live, but I feel like I could handle it so much better. I almost feel as if I gloat to my friends and rub it in their faces that I get the care they so badly want. I don’t intend for it to come across like that, in fact the fact that i’ve realised I do it has made me angry in ways I can’t even explain.

I want everyone to get the same treatment. We all get treatment under the NHS, so why the fuck does your postcode dictate how good your treatment is? It’s bloody ridiculous and it makes me angry and frustrated.

<Rant Over>

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Yoyoing.

The past few months have been a bit like an emotional yo-yo for me. I’ve had as many ups as downs and that’s difficult to deal with. It’s hard to get yourself into a mindframe that can deal with both in short spaces of time.

While the ups have been reasonably easy to deal with, the downs have been extremely difficult. I was home for my birthday in September, and brought Sophie home with me. That was a really good trip home,  even if it did end in Sophie being taken off the plane by the anti-terrorism police and an ambulance crew…. More on that later. It was good to just have a few days of doing very little and spending some quality time with my family. I hadn’t been home since January when everything kicked off with my mental health, and I really missed home.

Having asthma, one has to learn to deal with the unexpected and unwanted experiences. But I think one of those most unwanted things that could possibly happen is when you have an asthma attack on a plane and have to get taken off said plane by the emergency services. Which is exactly what happened to Sophie. Her chest had been rubbish while we were home, and my main aim was just to get her back to Manchester. Needless to say we did some rather foolish things in order to make that happen, but at least we got there. Her chest kicked off though on the descent into Manchester airport, and we had to let the crew know that she needed an ambulachariot. Unfortunately the way it works at the airport is that the first response is the fire crew medics, who decide then if you are poorly enough to warrant a proper ambulance. But if you are going to delay a flight, they have to deploy Anti-Terrorism officers aswell. For all they know you’re delaying it for some naughtier reason than naughty lungs.  But it was amusing watching them all arriving to get Sophie off the plane. Concerned friend and all that, I couldn’t stop laughing and asked them to handcuff her. I’m a good friend. Honest. But that meant that we didn’t get a chance to pick up our checked baggage which was a major pain in the arse. There was stuff like a lot of my spare meds that I needed in it, and my colouring books. Which were definitely an urgent necessity! And then I managed to end up in about 2 days later. So we were both on the respiratory ward at the same time. Thankfully we didn’t get a chance to cause toooo much havoc. I think.

On Wednesday though, something new and totally unexpected happened. I had a seizure. In the middle of WH Smith’s in the sodding Trafford Centre of all places. We think it was related to my adrenal stuff because I’d forgotten my evening steroids, and when Cookie stabbed me with steroids, I came round, but it was a fucking terrifying ordeal. I bit my tongue pretty impressively which made drinking and eating for the past few days a nightmare. It just scared seven bells out of both of us. I think it’s taught me I need to be a lot better at taking my steroids on time. Urgh, the idea of that happening again just scares me in itself.

I did however finally get back to uni this week. I should’ve been back at the end of September, but between being in hospital and my head still not being great it wasn’t as easy as I thought. I went in on Thursday for my first lab. Thankfully this year my lab partner is a lot nicer, and it was his first lab aswell cause he’d moved from Bangor Uni. I managed to spill a pH12 NaOH all over the bench though, I wasn’t flavour of the month with the people around me whose module books I managed to kill. Whoops. I’m in Ireland this weekend because it’s my Mum’s 50th birthday, so I was off on Friday, and missed todays lectures but I’m flying back on Tuesday, so I should be able to get back for my lab on Thursday.  I do want to get back, and it’s getting to me something chronic that I’m struggling so much to do it. I should be able to just go back and get on with work as if I’d never left. Not having my stupid head controlling everything I do. It’s stupid and it’s making me angry. I know I can’t help how my head behaves, but I just want to get back to being normal. Or as normal as I can be.

Tonight I got some news that’s shook me up a bit. In January when my head went to pot, one of the contributing factors was that I’d found out that my nanny had a lump in her temporal lobe. Up until recently they weren’t worried about it and had said they didn’t need to do anything. she’s had a scan recently and they’ve found it’s grown 2cm since they last scanned it in June, and want to see her as a matter of urgency tomorrow. It’s totally freaked me out. I don’t like the idea of ANYTHING being wrong with nanny, never mind it being neurological.  Brain stuff is scary. It could change her. And I don’t like the idea of that.  Nanny and I have always been very close, and the idea that there’s something neuro going on is scary. And unfortunately my science brain has gone into total over drive and is over analysing it all. I’m a bit mental at the best of times, and having something like this to read up on isn’t the best idea.

I understand that life is stressful. But I’d just like a break for a bit. Give me a few weeks of things just going right and easy. And £500 :P. That would help.

It’s been going being home though. It was mum’s 50th birthday yesterday, so the whole family got together on Saturday night for a meal. It was a really good night. It was the first time I’d seen all my family together since my Nanny’s 70th, and it was an opportunity for other halfs to be introduced. I hadn’t met Kieran’s(uncle) new girlfriend Esther and mum got to introduce her new boyfriend, Gerald to the family.  Gerald’s mammy was home aswell and she came along. I was dreading it to some extent because I don’t like big groups of people and I knew that there was quite a lot had gone on that I hadn’t a clue about and I like knowing, but I’m really glad I just bit the bullet and went. It was a fantastic night and I really enjoyed it, and so did mum. Which was the important part.

I’m flying back to England tomorrow though, and hopefully can start getting my teeth back into uni. We’ll see. I’m looking forward to at least trying. Here’s hoping it all goes a bit better than last year.

 

 

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Making tough choices.

The past few weeks have been totally manic for me. Between myself ending up in hospital, Cookie going to Spain and my head going to pot, losing one of my best friends, having to cremate said friend, making the decision to resit first year and making the choice to bring Sophie back to Ireland with me.

At the end of August I was meant to sit my end of year exams at uni. Because of my mental health, my GP, Cookie, Sophie and I had made the decision to defer my May exams to give me the best chance of getting my head into the best place as possible. Unfortunately, I ended up in hospital during the first week of the exams. I managed to make the first one, which was Cell Biology but wasn’t well enough mentally or physically to sit the rest. This left me in a bit of pickle in that I wouldn’t be able to proceed into second year because I didn’t get enough credits. So I attended quite a bit meeting in uni last week with my tutor, lab module co-ordinator and student welfare officer. We have decided that I’m going to redo 1st year as a clean slate and not have to sit the modules I passed, which were Study Skills and (shock horror) Cell Biology. I was totally gobsmacked to see I’d passed CB! It’s my worst subject!

Making the decision to resit 1st year and not just go “fuck it, I’ve had enough” was not easy. Every part of me at that time was not believing I was in anyway smart enough to be doing this course or well enough to be able to keep up. I just wanted to be able to do it in 3 years like everyone else. I know not everyone else didn’t have the crap going on that I did, but still. There’s so much I need to be able to do to keep up, and I’m scared I’m not going to be able to again. And then it’s essentially 2 years of my life and about 15 grand wasted. But I enjoy uni. I love having a reason to get out of bed and do something, I love learning new things and I’m excited to see what the future will hold for me. So I’m going to give it another go. Hopefully now we  know my head is doing a lot better(touch wood), I’ve had my shoulder surgery and hopefully my chest consultant will pull his finger out, things will be a bit easier this year. But I have another reason to work hard, and I’ll explain that in a minute.

I’ve had some rotten luck with the DWP lately. I got back from Leeds and the meeting at uni on Wednesday last week to a letter from the council telling me my housing benefit had been stopped. At this point I totally panicked and rang the council. They told me it had been stopped because it was up for renewal. I’d heard nothing about this and had no letter about it or anything, so needless to say I was a total mess.  At this point I rang the DWP to find out what was going on. They said that they hadn’t actually been cancelled or up for renewal, but in fact they were only suspended because I hadn’t sent in proof of my student finance for this year. I hadn’t a clue I needed to and was surprised when they mentioned it. The woman on the phone told me that they should’ve sent a letter out but didn’t for some reason and the only thing they could do was fit me in at the job centre in person to get the relevant documents sent into them quicker than it would be by post. Thankfully it was pretty much sorted by that afternoon, and hopefully things are semi sorted. Unfortunately due to a change in my student finance rate, my ESA rate has dropped considerably which is causing me a great deal of worry at the minute. I’ve been struggling to manage as it is. I’m debating cancelling a few things that aren’t totally necessary and seeing how much I can knock off monthly bills.  It was just a really shitty week.

I’ve spent a lot of time in Leeds lately. Sophie ended up quite poorly in her local and unfortunately her mum was in the Scottish Highlands and couldn’t get home, so I said I’d hang around to make sure she was OK and not on her own. I ended up with a sore arse from sitting in hospital chairs for so long! But we picked her up from hospital when she was discharged and the difference I saw from when I left her in the evenings during the week was astounding and was good to see. It was absolutely gutting and soul destroying to see her in so much pain and not being able to help or do anything. She really is an amazing human and I wish she understood that. But knowing that she wasn’t on her own has helped us both deal with it a bit. It was a very difficult admission for her, both mentally and physically, and being able to be there to hold her hand and show her the difference that she makes to me when she does the same was rewarding.

The reason I had to leave Leeds was that I had to go to the funeral of one of my best friends. Simi passed at the beginning of August, but due to circumstances we were only able to say goodbye properly last Thursday. It was heartbreaking. I was in no way ready to say goodbye. Simi was doing the same course as me, all be it at a different uni. But it brought us so much closer together and we spent many a night moaning about uni politics, lecturers and the stress of assignments and exams. She would’ve known exactly what to say when I made the decision to resit the year. She always just knew the right thing to say and I can’t see how it’s ever going to not hurt. To not be heartbreaking when I see a picture of us both or to make me cry when I think of good memories. I’m just glad she was able to fill the last few months of her life with things she enjoyed. And that brings some comfort to us all.

I’m going to be going to Ireland on Wednesday for the first time since January. I absolutely cannot wait. I’ve not been home since January because of many circumstances. I’m taking Sophie home with me for the first time ever. I’m totally beside myself with excitement. I’m counting down the days. It’s logistically a nightmare, but the idea of giving Sophie a break for a few days and seeing where I grew up is fantastic. It’s coinciding with my birthday as well so I’m hoping we can all go out for a few drinks. It was tough making the choice to ask Sophie, as she has a lot of medical problems that could stop her flying and is taking a lot of phone calls and toing and froing to try and get it sorted. But I made the choice to ask her if she wanted to and left the ball in her court. And she made the choice to come over! And I’m glad she did! I’ve already started writing my packing list and tidying my room so I’m not having to come back to a bombsite!

 

So anyway, it’s nearly 4am and I’m not asleep.

 

Until next time people x

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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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Cookie.

So I’ve mentioned Cookie a lot on this blog, but I don’t think I’ve ever actually explained who she is. Cookie is Vicky, my flatmate. But with both of us being Vicky, it got a bit weird. We became friends about 8 years ago on the Kick Asthma message boards, which was the kids version of the AUK boards. We chatted for years online but nothing ever came of it until I moved to England in 2009. The first time we met, I came up to Manchester to go to a dentist appointment with her. At the time she was terrified of the dentist and had a root canal due. We were sat talking about it at 11pm the night before, and I decided that night that I’d get on a train the next day and come to the dentist with her.

The second time we met, was when I was flying home from Belfast after a close friends funeral. Cookie had been really struggling with her mental health and not much was being done about it. I told her to book a doctors appointment and I would fly back into Manchester and go to the doctors with her about her depression. That was the first time she had confronted it and actually gone to get help about it. Scary to think that’s over 5 years ago. It was Friday 6th March 2009 that I finally realised how bad things were, and to see how far things have come since then is a massive eye opener. I often wonder what would’ve happened if I didn’t come up that day. This is one of those times where I believe in fate.

Anyway, when I moved back to England after my exams and had split up with Chris, we got talking a lot again. She was having a really rough time with her mental health, and a lot of the medication she was taking for different problems were interacting and causing her to get really sick and she wasn’t keeping food down. Her GP knew they needed to stop all her meds and restart them one by one to find out which one it was that was causing all the problems. But with her MH being the way it was, it wasn’t the safest of options to have her alone during this period. Her GP wanted her admitted to the psych ward, but if you’re physically ill, which she was with the vomiting, then the psych ward won’t take her. But the medical wards considered it psych’s problems. At the time I was sleeping on my friend’s floor in Loughborough, and was stuck in a bit of a hole. It was rubbish and my head wasn’t in the best place. I said that as there wasn’t any use me sitting looking at the same four walls in Bobby’s flat, that I may as well come up and stay with Cookie while she was going through all that. I was meant to stay for a week, and I never really left.

The thing is, a lot of people have said that I made the wrong decision in coming up to stay. And this is something I’ve thought about a lot since I made that decision in Oct 2011. I have a best friend called Vicky. My best friend was in trouble, and I was in a position to help. I’ve been the person who has needed someone to be there and there’s been nobody, and I know how alone I felt at that time. I’ve lost count of the nights that we’ve sat up playing card games because she’s struggling to sleep and her head’s misbehaving, or the times I’ve put her back together because of Self Harm accidents. I’ve spent many a night with her in A&E after an overdose and a lot of other nights sitting worrying about her because she’s my best friend and we worry about best friends. In 5 years, I’ve sat with my best friend as the doctors told me she’d been deprived of oxygen and may not wake up, I’ve held her hand as she’s sat rocking back and forwards because the voices in her head were shouting things I can’t even comprehend coming out of anyone’s mouth. I’ve had to restrain her as she’s tried to escape from a ward when she’s been under a psych hold, and been the one to get the blame when she legged it off the ward regardless. But at the same time, I’ve been the one who has ended up having an asthma attack because I’ve laughed so much at something random we’ve been talking about, the one who has learned patience, empathy and a hell of a lot of compassion. I make it sound like it’s been horrific. And yea, at times it was. But when she was sectioned in 2012-2013, I had to make a decision. Would I abandon my friend in the biggest hour of need? Or would I stick around, make sure she got better and that she had a home to come back to when she got out? Needless to say that I chose option 2. Since she was discharged on the 9th April last year, the difference I see in her is unreal. She has become so much better at dealing with her symptoms, and recognising when there’s problems. She is a much better friend to me and most people have seen a complete change in her attitude to life.

From reading this blog, you all know a fair bit about me. About my health, mental stuff and problems with my stepdad. Cookie was there for me throughout it all. She sat up all night with me when James was drunk and yelling through a locked door at me, trying to kick it down to get in. Back in the days of MSN she would keep me talking all night about absolutely everything and anything to try and keep my mind off what was going on, despite the fact that we would both have school the next day at 9am. Since I moved in with her, she has become my carer, cook, sister and best friend I could ask for. I’ve been bed bound for pretty much the past 18months because of my hip. During that time she’s cooked for me, taken care of the bills and things arising with the flat, helped me with the showers, gone shopping with me and generally been at my beckoning call, and not once did she complain. She makes me laugh on my shittest days, and knows exactly when to give me a hug. She motivates me in the gym and makes sure I take care of myself and eat right. She says that she’s done nothing special, but so many people would’ve run a mile when they first met someone like me. But we look out for each other. If you ever find this and read it Cookie, then please remember that you’re special. You’re my best friend and have stood by me throughout absolutely everything that’s happened. I know you say that I’ve done the same, but you had a lot more going on in your life than I did in mine. And it was a lot more to take on when I moved in looking after me. You’re awesome, and I love you to bits.

Cookie is more than a friend to me. She’s my big sister, my confidante, my non-lesbian lover and all round good egg and I couldn’t ask for a better friend. Everyone has friends, but best friends like this are few and far between, and you should make the most of them and treasure them.

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Project 365 Week 1

So I decided to follow on from Mumto2wcf‘s idea of Project 365. The idea is that basically you take a picture of something everyday that you want to remember and look back on. Different people have different takes on it, but my understanding of it is so I can see just what I got up to in the previous year and what could go better/worse etc. So anyway, I’m going to /try/ and keep my blog a bit more updated with P365 posts! So here’s week 1 of 2014!

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Day 1 – Wednesday 1st Jan – I had Michelle over for a few days over New Year. It was fantastic to see her again. I’ve not seen her since I was home in August and she’s never been over here before. We didn’t do alot on NYE. Cookie had gone to see West Side Story with her family, so we just chilled in the flat for a bit and watched movies. When cookie got back we had a few drinks, saw in the new year and watched the fireworks on the telly, and then headed to bed. It was a tough night for me. New Years has always been a bad time for me. I think it was always the thought that it was going to be another year of drunken arguments with James etc. But that’s not going to be the case anymore. But I’ll talk about that next time.

Day 2 – Thurs 2nd Jan – I’d said goodbye to Michelle that morning as she had to catch her flight back to Dublin about 1pm. So she had gone to the airport about 10.30 because me and cookie had hospital appointments to get to for 11ish. I had clinic with my consultant and cookie had her Xolair jab. Clinic was pretty successful. He’s going to speak to my Orthopeadic consultant and tell him that he doesn’t think my chest is a reason not to go ahead with my hip replacement. So hopefully they’ll be more willing to go ahead with it. He’s also referring me to endocrinolgy. I’ve been having countless problems with my sugars lately, whereby I’m having to eat massive amounts of sugar to keep my levels up, then they’ll oddly spike a high for no reason. So he’s referring me to see if they can work out what’s causing it. It’s interfering with one of the nebulisers I take, as I’m not meant to eat or drink for 2 hours after, and if I’m needing to keep my sugars up, that’s just not an option. So hopefully something more will come of that.  But I was sitting in clinic doodling in my little sketchbook, and drew this picture of the 10th Doctor. AKA David Tennant’s Dr Who. I think it’s quite cute and I like the angle he’s stood at!

Friday 3rd Jan – Disaster. I’d been doing OK for most of the day, and then suddenly, out of nowhere started to really struggle with my chest. It came on out of the blue, and after a few hours of trying to settle it with nebs, I had to admit defeat. There’s a system used by the ambulance service for deaf people, whereby you can text if you need an ambulance. It’s also useful for me because if I’m having an attack, the last thing I want to be doing is having a conversation with someone on the phone. But this time they were really busy. As in it took them 35mins to send anyone out, and even then it was only a motorbike responder. I ended up having a paramedic themed fancy dress party in my flat with the amount of green meanies there was! But anyways, off to A&E and the usual rigmarole began again. IV’s up, nebs increased, oxygen and rest. We were having problems with my stupid sats again, and I was completely bored out of my tree so snapped the picture of the sats probe. It, along with a peak flow meter, are probably the two most hated items in a diagnostic arsenal.

Sat 4th Jan – So I’m still in hospital, and even worse is I’m on the Assessment ward. I hate it on there. It’s noisy, busy and the nurses are a pain in the ass. They’re all grumpy sods and it’s obvious that they’re only there for the pay they get. The entire time I was on that ward, which was about 4 days in total, not one of the nurses took the time to say hello properly. The HCA’s were great, and couldn’t do enough to make you comfortable, but the nurses are just… Urgh. I think half the problem is that they’re not a respiratory ward and are expected to deal with anything and everything that’s thrown at them. Which they do and are incredibly busy. I can’t say it’s their fault they don’t get to speak to you, but they could make a bit of an effort. But Cookie had bought me this teddy for Christmas, and I’d put him in my rucksack when I was packing for good luck, so he had a hat on and cheered me up! He was my guardian against the nasty doctors!

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Day 5 – Sunday 5th Jan – It was quite a rainy day, and I spent most of it snoozing or looking out my window. When you’re not well sometimes all you want to do is sleep. But the sun was poking through the clouds and I thought it looked quite cool! Sort of one of those “No matter how shit things are, the sun does come out” sort of pictures!

Day 6 – Monday 6th Jan – Much the same as yesterday to be honest. Except today I got moved to my respiratory ward. I like it on here, I know the staff and they know me. It’s good because it means that there’s always someone to talk to and they know how to treat me better suited to my condition. And there’s always someone in who’s around my age, so I’ve got someone to talk to aswell. It does make the time go a lot quicker and makes it easier. But I was waiting on a new oxygen mask since I’d snapped the elastic on mine, and just caught this picture looking down the tubing of the humidified O2. It’s quite wide and bumpy, so it makes a good pattern!

Day 7 – Tues 7th Jan – Cookie came to see me today and brought me some stuff from home. Including some Screme Eggs. I’ve been craving Creme eggs lately and I’ve no idea why. Must be the weather or something. But she’d brought me two, and before she left, one of them went missing under strange cicumstances, so I was left with only one! Luckily it was found the next morning, in the staff kitchen. I reckon the night staff wanted it and stole it. Cheeky gits.

But until the next one, Hope everyone’s ok!

Vicky

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Letter to dad.

I wrote this the other day and sent it to dad. I think it sums up why I love him so much and why we get on so well.

This was meant to be a list of films/telly stuff I wanted to download, but I decided to turn it into something else, mainly cause it’s just been one of those days that I’ve been thinking about anything and everything.

The past few years have been a bit shit for both of us. I don’t think I need to list the amount of rubbish we’ve both gone through, and in some ways are continuing to go through. When I was at one of my lowest points, when things were really starting to go downhill with James, you were the one that was always there for me. I knew that I had you coming to get me on Friday evenings and that I could spend a weekend away from it all and that you’d provide a listening ear for when I needed to let loose. For 3 years, probably more, you listened to me moan, cry and groan about the asshole that I was living with, and although you wanted to do something about it, you didn’t because I had said no. I can’t begin to imagine how hard that was for you knowing that I was getting so hurt by what was going on and not being able to do anything about it, but you kept your word that you wouldn’t say anything to him, or get involved. And I really appreciate it. Looking back I think it probably would’ve made things worse with me and mum, and at the time we were barely speaking, so I can’t imagine what it would’ve been like if it had of gotten any worse.  But you went against your better judgment because I had asked you to.
When you flew me out to New Zealand, and we spent those few months travelling together, it really was some of the best times of my life. It was something that I can say I enjoyed about my teenage years. And I still look at the pictures and think how lucky I was to be able to do that kind of thing, none the less with my dad. I got to spend proper time with you, we talked a lot about what was going on at home, and you gave me the courage and the knowledge to get through the next few years. I look back on those months and smile, and remember that no matter how shit things get, I’ve always got someone that can make me smile. I don’t think you realise just how much I appreciate what you did for me that summer. I gained a lot of insight into the world and learnt not to take so much for granted, specially after spending time in Cambodia. Now I consider myself incredibly lucky that I’ve seen other parts of the world and how, even when things seem at their worst, there’s always somebody worse off. I try not to take things for granted so much anymore. Then coming home for my birthday, and sitting at a table with Pappy, who lets face it, isn’t the easiest of people to get on with, meant a lot to me. For the first time in about 10 years, I had my family in one place, being civil with each other and it was a good night. I still look at the picture of us all together and smile.
I don’t think anyone is as happy for you than I am. You’ve finally found someone you’re truly happy with, and have a job that you’re enjoying and that’s secure. You’ve not exactly had the best of luck in the past with relationships and jobs, but to see you happy now, is something that really makes me happy. Irene is someone that, in my opinion, is perfect for you. She really is a special person and I don’t think I’ve ever met anyone like her. She really is a caring person and the fact that you love her and trust her, is amazing. I love you to pieces, and the fact that you’ve found someone who loves you as much as you love her, is something you’ve needed for a long time. I honestly think that Irene is the person that you should spend the rest of your life with. And I couldn’t be happier. I really like her and consider her as much a part of the family as I do mum and you.
The op I’m having in a few weeks time, is to be quite honest, scaring the crap out of me. But the one thing that’s stopping me from freaking completely is that you’re going to be there with me. I know at 21, and after all the other crap I’ve been through with my health, that I should have a bit more courage, but sometimes we all just want our dad. It means a lot that you’re coming home for it, because I know how much pressure you’re under with work at the minute. When you showed up on that Saturday when you were home for the funeral, you’ve no idea how much it helped me. Sometimes when you really feel crap, there’s only one thing that would cheer you up. I’d resigned myself to the thought that it wasn’t going to happen, because it was just not possible. But then you showed up and it really gave me the morale boost I needed. I came out of that admission feeling better than any other time and I’ve got my all time best lung function at the minute. I’ve got you to thank for that. Sometimes you have to be mentally well, to be physically well, and you got me out of a hole I was in.
I know sometimes I’m a complete pain in the arse, and wind you up something shocking, but I do love you to pieces. I don’t think I’d be the person I am today if it wasn’t for you, and how you’ve been a constant support to me throughout the past 10 odd years or so. I like to think that I’m a stronger, caring person and in some ways, a bit more mature than most 21 year olds. And I have you to thank for that. For making me see the bigger picture and not just focus on myself all the time.
I love you more than I can put into words, but I hope this shows you a bit of that. I can’t wait to see you in a few weeks, and even though it’s not going to be under the best of circumstances, I’m just going to be happy to see you.
Love you so much
Vicky xxxxx