1

Running on empty.

I’ve been really busy this week, and I think I forget that I can’t just keep going and keep going and nothing will happen. This past week has just been manic for me and it’s actually wrecked me.

I was meant to be going to the hospital for my MR Arthrogram on my shoulder on Monday. Due to my latex allergy they have to have me on the first slot in the afternoon and have the room deep cleaned beforehand. I had rang them when the appointment arrived in the post because I knew that it wasn’t the first slot, so they rebooked it and booked a deep clean. This was about 5 weeks ago. I rang them about a week before the scan to double check they had booked a deep clean and got told that it was definitely booked and sorted. Arrive for my scan, gets to half an hour past my scan time and I’m starting to get a bit miffed. One of the radiologists comes out and brings me round to Interventional Radiology (IR) and tells me on the way that it wasn’t booked for a deep clean but they were trying to get a hold of the team to do it. Of course I decided I was annoyed at this and was quite possibly giving off the angry irish impression. I collared the radiologist who I know quite well cause she puts all the PICC lines in and is quite senior and told her how annoyed I was. I was due in on the Wednesday to have my new PICC line put in so Sharon managed to work it that they did my Arthrogram and PICC line on the Wednesday at the same time. In some ways it was a good thing, but it scared the complete crap out of me. Normally I deal really well with stuff like that, but the arthrogram was a new thing for me. I’d never had one and I didn’t like the idea of a needle in my joint. Cookie has had a few of them now though so she was able to tell me what would happen and I’d seen her having hers done so knew what to expect. Still scary tho. So it all got done on Wednesday. Unfortunately they had to inject quite a bit more dye into my joint than normal because they kept missing the place they wanted to put it in, so all day Wednesday and a good part of Thursday I kept dislocating my shoulder. It wasn’t very pleasant.

So then I went up to Edinburgh on Friday to stay with Dad and Irene for a few days before they go to Cambodia. I needed to make peace with dad because we’d had a big argument about a month ago and we hadn’t really left things on the best note and I don’t like doing that. I had a good weekend but it really did knacker me. I’m used to being able to rest in between busy days and allow my body time to recover but I literally didn’t stop for over a week and it kinda came to a head today when Cookie basically put me on house arrest and informed me I was not going to Salford to see my friend in hospital, that I was going home, having a neb and going to bed. Apparently I looked like a zombie and sounded like Wheezy from Toy Story

Wheezy

As brittle asthmatics, or even for many people suffering from chronic illness, every task or outing we do takes more effort than most people. We have to make sure we plan our day with time to neb. It’s difficult when you want to be a normal 23 year old to allow yourself to stop. It’s something I’ve been struggling with quite a bit lately. I want to be able to keep up with those around me and to be able to do busy weeks like last week and not struggle massively after. I think it’s one of the biggest causes of depression in spoonies. We want to be normal. We look normal enough, and get told often enough that “you don’t look sick”, so why can’t we be normal? Why does everything we do need a military prepared operation to get sorted. Why can’t we just decide we want to go somewhere, jump in the car and go? It takes a lot physically when you’re poorly. It’s constantly hard to breathe, then you’ve got everything that goes along with it. Steroids have caused so many problems on top of asthma for me, and that’s been harder to deal with in a lot of ways than asthma. The whole bilateral hip replacement saga, diabetes, the adrenal insufficency, osteoporosis, diabetic retinopathy and weight gain. Asthma doesn’t just affect your breathing. And that’s what so many people struggle to get their heads around so much. But we want to be normal as much as you see us as normal.  So i’m doing very little for a few days and recovering from all the nuttiness.

I will be able to go to uni in Sept and not end up a mess. Honest.

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5

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!

0

Rough times.

It’s been a rough few months for me. After I posted last in January, things went downhill with my chest, and I ended up quite poorly for a while. I don’t know if I’m ready to post about it all, but that’s what my blog is meant to be about. Talking about things, getting them off my chest and letting it out. This is gonna be quite whiney, and a lot about my health. If you don’t like it, then bugger off down to the end paragraph or just go away. Not really bothered which.

I went in via ambulance after feeling rough for a few days. Don’t really know what was going on, but I did end up needing adrenaline, hydrocortisone and bagging in the ambulance. Unfortunately I ran into the nurse I have problems with on triage, and she decided despite being rather poorly and having obs that would scare most doctors, that I was fine to be put into a side room in majors. I was basically dumped in a side room and had the door closed on me. As a result of this, the large delay in getting my medications to me, and lack of anyone keeping an eye on me, I deteriorated to the point that I was rushed into resus by the chest doctor when she arrived and had ICU fast bleeped. It was very hairy for a period of time, and I still have major issues about it. I ended up on BiPAP for about a week and felt rubbish for several weeks after. As a result of the treatment I received from said nurse, I put a formal complaint in, but I will go into that another time. I’m not really sure who reads this, so I don’t want the wrong people knowing about it all.

IMG_3391-1

A few weeks in hospital later, and I was well enough to finally come home properly (they discharged me and I ended up back in that night, says it all really). I think my consultant has finally realised how fed up of all of this I am. He’s listened to the fact that my IV access has gone to shite and organised a PICC line for me. It did take a while for them to get round to putting it in due to the fact that people kept forgetting to tell Interventional Radiology that I have a sodding latex allergy, but it’s in now. The battle to try and keep it in however is only just beginning and trying to get someone to take responsibility for it in the community has been a nightmare. In the end I just gave up and begged the hospital to look after it.

I don’t think I took things seriously with my chest until quite recently. I’ve always just thought “Oh, I’ll go into hospital and they’ll sort me out and I’ll be fine.” I don’t think I ever thought about what would happen if it didn’t work, and that admission forced me to. I don’t like not being able to feel safe in A&E. For the most part, my local A&E is fantastic and most of the nurses are brilliant. But it’s the one nurse that can make life very difficult for me.  It’s inevitable that I will have to go back through A&E, it’s the nature of my condition. But it’s much more difficult when you have to battle the system to get the treatment you need.  I’ll probably run into her again, but hopefully next time she will be nice to me and treat me right. Or just leave me alone. One can only hope. I have been through A&E since I put the complaint in, but I don’t think she was aware of it and she wasn’t there anyway so I didn’t have to deal with that. Urgh. I hate asthma so much right now. I’m scared that I’m going to have an attack and that’s going to be it. I’m scared that something’s going to happen that means I can’t be me anymore. I’ve finally started to get my life on track and I’m scared that asthma is going to screw that up.

I’m hopefully (fingers crossed) starting university in September, and that’s a big deal for me. I left school in 2011, and since then have been deemed too unwell to do it. I’m kind of hoping that now is the right time to try it. I’ve had both my hips done, my chest is (hopefully) learning to behave itself and I’m in a much better place mentally than I have been in a long time. I’m currently trying to sort student finance out for September, and that’s my current massive headache. But hopefully I’ll be sending that application off in the next few weeks. But hopefully sooner because…. MY LITTLE BROTHER IS COMING OVER AGAIN! Yaaaay! I last had him over in Nov 2013 for his 12th birthday, and I’ve been saying I’d have him over again since then but between naughty lungs, Cookie not being well and him starting secondary school, I’ve not had a chance to. But I’m really looking forward to it cause I’m a lot more mobile than I was last time so will hopefully be able to do more with him. I’m planning a few things like the science museum in town, and the 3D IMAX cinema at the Trafford Centre. Definitely looking forward to it though!

Things are definitely on the up for me though, and I’m really hoping it continues. It’s been a tough start to 2015, but it can only get better and I’m really hoping it does.

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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!

2

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 🙂

0

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.

1

The one.

I’ve not been able to catch up on my P365 lately, I’ve had a rough few weeks. I will catch up with it, but there’s quite a lot to talk about in the meantime.

At the minute I’m in Grantham. Myself and Cookie came to see Kira for a few days. We hadn’t seen her since she was in hospital after her hip replacement, and i’d not seen her at home in months so we decided the time was right to go say hi. That and I wanted to borrow her wheelchair for the Harry Potter tour. I’m finding walking any distance difficult at the minute, and I want to be able to enjoy the weekend we have planned.

We got the train from Manchester on Friday and we were planning on staying till the Sunday/Monday depending. Unfortunately as these things go, it didn’t all go according to plan in any sense of the word and in true Vicky fashion, my lungs decided they didn’t like the fact that I was getting on with my life and threw rather an impressive strop. I had said to Kira on the Saturday that I wasn’t feeling quite right, and that if things didn’t improve I was going to put my pred up. Kira being a sensible dr and all that was quite supportive and gave me a few options.

I spent Saturday night nebbing, and whacked my pred up to 60mg in the hope that it would help but it really wasn’t, and I was starting to get quite worried as to what was going to happen. Obviously I’m not at home and am not at my normal hospital where nobody knows me. We called an ambulance and a L.I.V.E.S First Responder showed up after about 20mins. I don’t think Kira was overly impressed when she came in and asked “So have you used your inhaler?” When I was sitting on my nebuliser pretty much struggling to breathe. Because of where Kira lives, it takes slightly longer to get a proper ambulance so she had called one and was sitting pretty much looking at me. I did find it amusing when she had to ring the ambo control and ask them where the ambulance was because “I’m getting quite worried about my patient” but was sitting looking at me doing v little. Luckily when the ambulance came they were really good and got me out to the ambulance, and with all dues to the paramedic he got a cannula in me, gave me some steroids and adrenaline and blue lighted me to A&E. I don’t think i’ve ever seen things move quite so quickly in A&E in my life. As soon as I was in A&E they had me on a monitor, neb and gas done and within 2 hours I was in CCU. Because Grantham is a local hospital they don’t have the capabilities to do anything near what they needed to for a severe asthmatic and because my gases were a bit mad, they had to transfer me from Critical Care in Grantham to ICU in Lincoln. I don’t think I’ve ever been so scared. They were talking about tubing me and wanted to ring my mum and had me nil by mouth and the consent forms signed. I’ve never come so close to loosing my head before, and i think if it hadn’t have been for Cookie and Kira coming down, I probably would’ve lost it.

Once I got to ICU in Lincoln they had me hooked up and my Art Line that I had put in in Grantham re connected to their equipment and had some meds. Unfortunately they couldn’t give me aminophylline which is the medication I normally have because I was in SupraVentricular Tachycardia which is a very fast heart rythym and Amino can make your heart run quickly so it was deemed too dangerous to give me anything that could increase my heartrate, so I was given Magnesium Sulfate and mega doses of steroids. Bloody things. But I really was feeling quite shit and just wanted to sleep, but couldn’t get my chest to calm down enough to let me. it was horrible. I’ve never been in the situation before where I’ve not been able to get better as quick as I needed and the fact I was struggling for as long as i was scared the shit out of me because I didn’t know if it was going to get better.

Luckily the next day they were able to give me some aminophylline, and on top of the regular steroids and Magnesium i’d been having it started to help and I was able to start to feel better. So I was on ICU for 2 days and then got to the Resp ward. I think I take for granted the fact that I’m under the care of one of the best respiratory centers in the UK and have a fantastic ward that do take care of me fantastically. While i can’t fault the care of the staff on ICU, the staff on the ward didn’t leave me as impressed. When i told them i was feeling poorly the next day, it took them over 3 hours for them to get some help to me and I was really starting to get worried. Luckily then they got a gas and realised I was getting tired and got some meds on board again. This was a scenario I was to face several times over the course of the admission, and i really don’t feel like i was given the best care that i could’ve. I understand that nurses are extremely busy, but when you’ve got a patient who has just come off ICU and has the history that I do, you would expect that people would listen to you when you say you don’t feel well.

I got out yesterday morning, and have come back to Kira’s for a few days R&R before I go back to Manchester. But I have a lot of unanswered questions about this admission, and a lot of things I want to speak to my consultant about. Because I’m scared. And I don’t like being scared.