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Naughty Noggins

So since my last post, things haven’t improved much. I’m on more medications now for my mental health than I’ve ever been and am still struggling to manage the most stupid of tasks like leaving the house.

I’m frustrated with myself. I want things to change. I want to be able to enjoy things. I hate seeing the strain it’s putting on Cookie knowing how much I’m struggling. The worst part is, I know exactly what she’s going through. I spent so long going through the same fight with her. So I know how tough it is seeing your best friend so low and not being able to help. I don’t want to push her away, but at the same time I’m terrified of hurting her. Of her feeling even more helpless. She’s my best friend and my person. Anyone who watches Greys Anatomy would see us as Yang and Meredith. It’s that kind of relationship. I’ve told a few people who I trust to the ends of the earth what’s going on, and have urged her to talk to people about how she’s feeling about it. I’ve always been the person she talks to, and now she feels like she can’t. It’s breaking my heart. But she still needs someone, and even if it isn’t me, she needs to know that there are people there for her. Hopefully she knows that.

I’m scared things are never going to get better. I was in hospital last week with my asthma, and my consultant actually told me he’s worried about me. Which he’s never actually done before. Apparently he knows things are rubbish because I don’t argue with him. I’m fed up of my lungs ruining my life and dictating so much. I’ve had to defer my end of semester exams until August because I just don’t have time to learn everything, and have surgery in April.

I was meant to have surgery on the 18th March. I had been for an anesthetic assessment with the anesthetist the week before and it wasn’t the anesthetist that I knew the consultant wanted, so I rang the consultants secretary who said the surgeon was on leave and she’d speak to him when he got back. So I rang them on Weds 9th, Thurs 10th and Fri 11th to make sure they were aware of the anesthetist issue. They said everything was fine and it was all going ahead. I rang on Monday 14th to check I had a bed for IV’s. I was due in for IV Aminophylline for a week before my operation to make sure my lungs were as good as possible. Got told I had a bed and everything was going ahead. Was just about to leave to go to the hospital and got a phone call from the asthma nurses saying it had been cancelled. I just didn’t know what to say. I was gutted. I need this surgery to be over and done with. It’s fecking with my head and I’m fed up with being in pain. On top of that it was timed perfectly. I’m on my easter break for the next three weeks so I wouldn’t have had to miss much uni. And they did this. So now it’s delayed until the 15th April. If they do it. They’re querying if I have MRSA in my lungs which is totally shite. Just need a straight answer from them about what’s going on.

I’m scared. I want to be able to enjoy uni again. I want to look forward to going out with friends. To not being scared to do things I used to be able to do in a heartbeat. I’m scared of the nightmares I’m having. Of waking up screaming that my dead stepdad is trying to kill my little brother. Heads are scary places.

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To the person who “wants the locker so they don’t have to carry books.”

Dear Friend,

Today you saw me using my locker in the lab buildings at university. The ones that we aren’t meant to have on long term loan and get emptied out after each session. You saw me putting the key back on my lanyard, putting my lab coat, folder and some other bits into it, shutting the door and walking out. I heard you mentioning to your friends how unfair it is that I get to have that locker and nobody else can. Well, let me explain to you a bit about why I have that locker.

I have a couple of health problems. Brittle Asthma, Adrenal Insufficiency, Diabetes, Supraventricular Tachycardia (in other words, my heart goes a bit stupid fast sometimes) and have had to have both hips replaced and am waiting on shoulder surgery. I also have a couple of life threatening reactions. So, needless to say, I have to carry a fair amount of extra medications around with me. I’m not actually in uni right now, cause I’m in hospital following a life threatening exacerbation of my asthma. Oh yea, please stop spraying your deodorant in the halls, it’s making my life difficult. Cheers. But this is about half of what is normally kept in my locker at uni. It’s what I like to call my “Get out of jail free” kit. It’s basically the stuff that if it really came down to it, would keep me alive. Sounds dramatic, but it’s kind of true. What you see is my epipen for when I react to the balloons that are currently all over the student union or have a massive asthma attack that goes from 0-100 in 5 seconds, my steroid injection kit (because we all need to look like Hulk, right? Or my body has decided to stop producing it’s own steroids and has chucked a fit at the idea of having to, so I have to carry artificial means around with me incase I get put under a lot of physical stress and need a boost quickly), some nebulisers to stop my airways from closing up when I have a reaction to your deodorant, some cereal bars for when my blood sugars go dangerously low and I start getting grumpy and confused, and then that little orange tin has a lot of tablets in it like more steroids, paracetamol (yes, even we need the paracetamol sometimes, it’s not just a fuck off pill),  anti-histamines, diazepam and some anti sickness. It really does start to add up. And that’s not including the device I have to carry around to use my nebules in, it’s about the size of a CD walkman by the way (if you remember those?) or my blood sugar testing kit.

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So I have to carry a lot around in my rucksack. Don’t forget as well that I’m waiting on surgery on my shoulder, so carrying a heavy bag can add to the pain I get there. And in my hips which have both been replaced. Add into that normal uni stuff like books, notepads, pencil case, a drink and then whatever other crap I have in my bag (I found thai baht in there the other day), It gets heavy. It also means if I manage to forget something important, that I’m not stuck in uni without a rather important medication or piece of equipment. I like to keep spares there incase something like that happens. I think that’s fair, wouldn’t you say?  But I know that “It’s really unfair that there’s one rule for one person, and another for everyone else” and I would totally agree with you that they should provide us all with lockers. But there’s about, what, 3000 people at our university? You planning on putting those lockers in the….?  I would gladly give you my health problems if it meant I didn’t need to use a locker. I know you didn’t mean it in a nasty way, or at least I hope you didn’t. But can you see now why I don’t like having to carry a heavy lab coat, my folders and lab stuff around with me all day after a lab? And why I do need to have a locker?  It’s not just for my deodorant and make up, it’s kind of important.

Cheers

Vicky

 

 

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Pointless Clinic Appointment.

Well I was meant to be seeing Dr N this morning. At the minute I’ve got a chest infection, and am feeling a bit rubbish.  Last night was the first night I got more than about an hours sleep and had to get up at 8 o’clock this morning to get to clinic on time.  I was expecting to see my consultant and get a couple of things sorted. I needed a plan drawn up for when I show up in A&E. Of the treatment I was to receive. Also to find out whether or not I’m staying on Bupivicaine nebulisers. So far they seem to be working, but at the minute I’m not able to take them while I’m on antibiotics. Because I can’t eat or drink for 2 hours after my nebs, I can’t have them. Increasing my steroids and having a sore throat means I’m drinking a lot more. And then having an infection aswell is making me drink a lot aswell. So it’s just not feasible. So they’re happy for me to restart them when I’m better.

But Dr N wasn’t in, and I ended up seeing a reg. Bearing in mind it’s August, the registrars rotated yesterday so it was a registrar that only started yesterday. He didn’t know how to sign into the computer. He had never read my notes. He didn’t know a thing about me. When I came in, he went to use alcohol hand gel. I warned him I’m very allergic to it and he ignored me. I started wheezing something shocking. He panicked and got the consultant in. I told them to cotton on, that I only needed a few nebs and I’d be fine. That as usual nobody had listened to me. So I had my neb and left. I went via the physios and managed to sort my hydrotherapy referral out, so I’m just waiting on an appointment for that now.

So yea, I got out of bed, wasted £10 on taxi fare that I could really have done with not spending and ended up feeling like shit for reasons that could’ve been avoided. Not impressed. So until the next time I splatt, or in 3 months when I see him in clinic, I won’t see him again.

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Ok, so positivity isn’t the way the world works.

The past few weeks haven’t been what I’d call positive. I was admitted to hospital again with my chest. It’s getting a bit boring now, but to be fair I’m starting to take the opinion of “Meh, another one” and get on with it.  Was a relatively short stay this time though, but how I got admitted is the funny part. I’d a scheduled diabetes review with my practice nurse. She’s absolutely lovely and she always makes sure to book a double appt for me so that we don’t feel pushed for time. But my Hb1ac which is the main blood test they do to check your overall diabetes control was fantastic.  So anyway I was coughing a bit, well, a bit more than normal for me and was being mono-syllabic in the hope that she wouldn’t notice I couldn’t put a sentance together. Unfortunately she knows me better than that and had an ambulance called before I had a chance to argue. I really wasn’t impressed. I wasn’t expecting any of it and felt really pissed off because at the time I didn’t honestly feel I was that rubbish. But I soon realised that she made the right call. I’ve an appointment on Tuesday and I’m gonna bring her a box of chocs and a card because I think I was a bit mean to her for calling the ambulance.

But the one upside is I’ve booked my flights home to Ireland for a bit 😀 Well, I’ve not booked the return flight 😀 I’ve not decided what date I’m coming back on yet.  I might book it later, but I like knowing that I’ve got the openness for coming back. I can’t wait to see my family. I’ve not seen any of them since Xmas and after my op on my hip, I’m not allowed to fly for 3 months, so I can’t wait and am going to make the most of it. 

Speaking of my op, I’m not happy at the minute. I got a phonecall yesterday telling me they were cancelling my appointment because the aneasthetist wanted to assess me aswell, and wanted to speak to Dr R and the ortho dudes about my suitability for general anesthetic. As far as I was aware, all three of those doctors were going to be at my appointment which was why it was so important I went. But apparently it wasn’t arranged that way. I was so angry when they moved it. I thought it was going to be the start of the ball rolling to getting my hip sorted. But ho hum. They are doing it for a good reason, and they’re only looking at it for my own safety, as much as it annoys me.

Being positive when you’re having a tough time isn’t easy. But you’ve got to look at others who are having a worse time than you but still manage to get through it and come out the other side smiling. You’ve got to keep doing that in order to maintain some kind of sane mind. The tallest trees in the forest withstand the strongest winds. And I might not be the tallest tree, but I’m certainly not the smallest. 

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Change of Attitudes.

When I started this blog, and even until very lately, the purpose of this blog has been to moan and groan about my health. But I’ve been thinking a lot lately, (Dangerous, I know) and I reckon it’s about time this blog changed direction. No matter how much I moan about stuff, it’s not going to change the outcome of situations. Only I can manage that, and it won’t happen if I sit here and moan constantly. I know that my hips fucked. I know it’s causing me a lot of pain and making things difficult for me, but I don’t want my health problems to define me. I know that from now on I’m going to be the girl on crutches, and that’s going to be the way for quite a while. But from now on I’m going to try and make this blog a bit more positive. Aiming more towards the things that are going right in my life. Because everyone has problems, and a lot of people have problems worse than mine and just carry on without moaning. 

So my new challenge is that every day I’m going to do something positive for myself. Not for others to benefit from, but for me to benefit. And then hopefully, at the end of every week I’ll be able to post and say I did this, this and this. It might not always work, and I know I’m going to continue to have shite days and will probably moan on here about them when I just want to rant and don’t wanna throw my problems at someone else I care about. But fingers crossed, this blog will be a bit more positive from now on.

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Stupid Bloody Lungs.

Well, you guessed it. I’m back in hospital. This time in Manchester just to be awkward. Two weeks  with another week definitely on the cards. I’ve had to cancel my flight home. It’s the height of shit. While I’ve ben in, theyv with my heart aswell. I’ve basically got what’s called Atrial Fibrillation, which as far as I can make out means that my heart isn’t in sync right when it beats which means it’s not oxygenating my blood right. It tends to happen when your heart’s going quite fast, and that’s how they found mine. It’s a bit shite because it’s another thing to take drugs for and to add t my ever growing list of medications. It also means I’m going to have to severely limit my use of nebulisers because a fast heartrate can trigger it off again and nebs up your HR.

Fecking bloody lungs needs hung, drawn and quartered.

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Popular Opinion

Right, I need a rant, and this being my blog is the place to do it. If you don’t like this fact then bugger off.

Ok, It’s recently come to my attention that certain people don’t like my attitude so to speak. I have two words to you. Stick it. If you think I enjoy being in hospital, that I enjoy going to ICU and having lines coming out of every fucking limb and hole you can, that I enjoy spending 10 weeks out of my school year stuck in a hospital bed and then managing to pass 6 A-Levels with distinction, then you try it. You deal with the fear when they tell you you’re going to ICU and the pain when they spend half an hour literally digging around in leg looking for a vein.

Look, I have asthma. I accept that. I also accept that I have to change a lot of things I do because of my asthma. If you knew how angry/upset/frustrated it makes me then you’d maybe have some small understanding of what I go through. Yea, Ok, you might have asthma too. You might feel as shit as I do. But I honestly thought that the people who go through it would be the last people to judge me for who I am and would be there to support me. If you don’t like this, then stop reading my blog, block me on facebook or whatever, But don’t ever, ever tell me that I enjoy this kind of thing.

Rant over.