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Walk the line

So people, I said I was going to try and blog a bit more, so this is me trying!

The reason my blog is titled “Walk the line” is because I feel as a brittle asthmatic, it’s what I do on a regular basis.  Every day we do things to keep us well,  but at the same time trying to live our lives to the fullest. We walk the line of pushing our lungs just too far. You can spend all your life being sensible and not pushing your luck and walking far away from the line, or you can spend your life walking the line but enjoying what you do. You can’t live your life scared of what’s going to happen the next time you open the door. 

At the moment I’m walking a line about going into hospital. My lungs are becoming less and less responsive to my medications and I’m finding myself struggling to breathe more and more often. However I’m also in the position of being too “well” for hospital, and this is the line that we walk when trying to decide when hospital is required. Do we go in and get told that we don’t really need to be there and to go home and rest, or do we wait at home until we really can’t breathe and then get told that we waited too long? It’s a difficult line to walk and even after having “brittle” asthma since I was 20, it’s a line I’m still struggling to walk. Most of the time I get it just about right, and go in at the right time.  It’s where we have to be hyper-aware of our symptoms, monitor things like peak flows better, and listen to our instincts. I’m the first person to admit I’m bad at listening to my symptoms. I’ll hold out until the last minute if I can get away with it. I know that I’m due into hospital on Wednesday for my regular aminophylline infusion, so I’m trying my damnedest (is a word, honest!) to stay out until then.

A&E is a bad place for me, it is the reason my PTSD is as severe as it is, and ironically can make my breathing worse because I get that worked up about going there, my chest gets worse. I’ve started to take lorazepam before I go because it helps stop me panicking as much, and actually helps my chest in a weird way.  It was suggested to me by my GP as my anxiety at the moment is causing a lot of problems.

This brings me onto my next point, Anxiety. There were 8.2 million cases of anxiety in the UK in 2013, and with the amount of people being diagnosed with anxiety related conditions on the rise, this number is probably much higher, coupled with the amount of people who don’t see their GP or a health professional about it. My anxiety has become more of a problem in the past 3 years since I had my nervous breakdown, but it’s become much more of a problem since Cookie moved out and I’ve been living on my own.  One of my biggest anxieties is when I open the front door, that someone will be stood waiting to attack me. I can’t see very well through my peep hole in the door so have to open it with the chain still on and then open it properly. My psychiatrist has put me on pregablin to try and help with this. It’s helping a bit and we’ve increased it from 50mg – 100mg recently due to my symptoms continually getting worse. But hopefully things will settle soon. It’s all about walking lines. I walk a line of being doped up too much to function, and not have huge anxiety issues, or I take the bare minimum and have to deal with the anxiety at a higher level. It really is a tough one. Right now I think I’ve got some kind of balance. I’m really struggling with my memory, but I think that’s a side effect of taking quetiapine last year. But I’ll get there, hopefully going back to university in September will help this.

Anyway, until next time! x

 

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Where I’m at.

So it’s been 2 months since my last blog, and I think quite a lot has happened. I’ve always tried to follow the philosophy that it’s OK not to be OK, but I think lately I need to start taking a leaf out of my own book. Things haven’t been fantastic, in both a physical and mental state, but I don’t think I’m allowing myself to accept that it’s OK to not be OK.

I’ve had to make a few difficult decisions this summer, and it’s really getting to me. Although I’ve changed my university course to one that’s less taxing, I’ve not been able to go back to uni this year. I’ve basically decided to wait and start next year. I don’t think I’m ready this year, and there’s some stuff I really need to get on top of, learning to drive being one of them and then trying (probably badly) to learn to save up a bit, as I’m going to lose a large chunk of my benefits when I start back at uni. The choice to not go back to uni this year wasn’t an easy one. I was looking forward to getting back into some kind of routine with my day, but I also need to remember that my mental health is fragile at the minute, and the slightest thing could probably topple me.

More recently, I got discharged from hospital yesterday after what was, for me, a rough admission. I’m lucky though that one of my best friends, and my fairy god father, Chris, came up to stay while I was in hospital so I wouldn’t be on my own. I think the reason this admission was tougher than most, was that I had a respiratory arrest when I was waiting on the ambulance. From what I’ve been told, I stopped breathing at some point before the ambulance arrived, but not long after I called it because of the times they’ve got, and from what I got told, came round again in the ambulance. I know I had at least 2 shots of adrenaline and they got a cannula (tube into your vein) in me while I was in my flat. Purely from what I can see and what I can remember from it all. It’s left me really scared of being on my own. I understand that I can’t live my life scared, and I can’t always have someone here. I live on my own now, and I’ve got to learn to deal with that and not live in fear. I’m scared of being on my own now, and that’s not something that is sustainable. So I’m on my own for a few nights, then my friend, S, is coming to stay over the weekend.

Not much else going on to be honest, Apart from the fact I’m waiting on my tesco delivery?!

Until next time xxx

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Boring life.

So as the title suggests, I’m leading a rather boring life at the minute. The only thing remotely exciting is my trips to and from Bradford and Manchester to stay with S/S staying with me.  To be honest, it’s probably a good thing. I’m not sure I’d be able to cope with much more at the minute, I’m just about holding things together with things like they are.

I know I talked about it in my last blog, but my MH at the minute is properly down the shitter and I’m struggling to not do something stupid most days. My CPN is only seeing me every 2 weeks because she’s always on bloody annual leave.  I could probably do with seeing her a bit more often. will try and remember to mention it to her on Wednesday when I see her.  But my psychiatrist has started me on Pregablin for my anxiety. It’s helping my anxiety, but I’m getting some really annoying side effects from it like constant twitching/involuntary jerking. I’m going to give it a few weeks and see if it settles down before I give up on it.  Getting back to uni in September would be a lot easier if I wasn’t constantly anxious about leaving my flat. Fingers crossed, eh?

I’m managing to keep my flat in some kind of reasonable state. I’ve been trying to keep on top of the dishes and my room is always tidy enough that I can cope with it. I spent a while sorting my living room out yesterday so there’s no longer boxes all over the lounge. I managed to get them all to one side of the lounge so I can use the TV in there if I want to, and I think I’m going to move my PS4 in there. It’ll more than likely help my sleep because I’m terrible and sit up till the early hours playing if I really get into a game I like. So hopefully moving it into the living room will help that.

Anyway, I’m tired and want to go to sleep.

Bye for now!

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Re-evaluating.

Lately I’ve found myself re-evaluating what I want out of life. I’m nearly 28 (Sept!) and am still living the life of a teenager, and up until recently, I was pretty happy with that.

I’m not sure what has changed so much that has made me think about all of this. I think I’m seeing my friends graduating from uni, buying houses, having kids and getting married has made me start to think about where I want my life to go.

I know I said in my last blog I’d dropped out of Biomedical Science at university. I think the course I’ve swapped to is going to be much better suited to me. I need to speak to the university and student finance about it all, but I’m feeling better about it and I’m excited to finally have a reason to get out of bed in the morning again. I think as well psychology with counselling is going to be better for me in the long run when it comes to trying to find work at the end of things. I already know what areas I want to specialise in and I find myself becoming more and more excited about starting.  It’s weird, I’ve got totally different emotions to what I felt when I was starting Biomed in 2015. I think I’m a bit more wary and accepting of things this time. I went into Biomed thinking I was going to fly through it and be able to keep up and would graduate in 2018. I think this time, although I know I pretty much have to do this in 3 years (SFE won’t cover more than 3 more years for me and that’s with extenuating circumstances), but for some reason I’m more optimistic and hopeful that I can manage this one.

Cookie “officially” moved out on the 7th May. I’ve had Sophie staying since then, so it’s not been a case that I went straight from having someone about constantly, to being totally on my own. I’m not sure I’d be able to cope with that in one go. But I’m glad it’s happened the way it has. Cookie and I have lived together for 8 years and there’s only so long people can put up with each other without being in a proper partnership, which contrary to popular belief, we weren’t. I’ve been making an effort to start and pack up the rest of my stuff for moving. I’ve not yet “gone live” on Manchester Move so I can’t bid on any flats or anything, but when the time comes that I do, I could be given 3 days notice that I need to move, so I need to make more of an effort to get things in order. Cookie took both the sofas, so yesterday I had a second hand sofa delivered. It’s a nice sofa and comes with a footstool that doubles up as storage. So bonus on that one.  She pretty much gutted the flat so I’ve been building up some of the stuff I need to live between now and moving. Things like kitchenware and what not. And Sophie bought me a four slice toaster which I’ve been after for an absolute age and Cookie wouldn’t let me have. So I’m pleased.  I think moving into my own new flat will be good for me though. They gave me the option of staying where I am and paying bedroom tax, but I want a fresh start in somewhere new. My current flat will always be “mine and Cookie’s flat” so getting somewhere new is going to be good for my mental health. It’ll be nice to just get some space and not constantly have to be thinking about other people or moaning at people to tidy up after themselves. I’ve spent the past 8 years trying to clean up after Cookie and it’s part of what has caused a rift between us and expedited her moving out.

My mental health still isn’t fab, and I’m in hospital again with my chest. But I’ll get there with that. Mind over matter. Going to try and work towards some kind of plan for working with uni and my chest consultant so that uni doesn’t get as impacted by my chest as it did with Biomed, and hopefully at some point in my life they’ll give me some kind of psychotherapy that I’ve been waiting on since 2016. I’m going to fu*king get there though, and this time next year you’ll hopefully see a different Vicky.

 

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No Title.

No title is all I could think of as the title of this blog. I don’t know what to write about, I just know I need to type. So here it is.

The past few months have been tough. The past few weeks especially. A few months ago, my flatmate (Cookie) decided she wanted to move to Derby to move in with a friend there. It means for the first time ever, I’m going to be living on my own completely. I’m planning on moving into my own flat in the next few months, as we’ve set a date for the 7th May so we’ve got time to get the flat cleaned out etc.  I’m absolutely terrified. I’m not entirely sure how I’m going to cope with being on my own with my mental health being the way it is, but I’m sure I’ll figure it out. I think it’s just a case of getting on with things and crossing bridges as they come.

I’m constantly pissed off at the minute. I feel like I can’t say anything without being made to feel bad for saying it. It’s breaking me down and I know there’s very little I can do about it. People should be able to vent without being made to feel bad for doing it.

Other news? I’ve withdrawn from Biomedical Science. I just wasn’t keeping up with the amount of labs we had to do. It was 4 labs a week and I couldn’t miss any as attendance in those labs makes up a percentage of your overall grade and you need to be signed off as competent in the skills you learn in labs. So I’m changing to Psychology with Counselling. I’ll still be doing it in Salford, but hopefully it’ll be a lot easier to work from home and I’m hoping that it’ll be easier for me to keep up. That’s the aim anyway. We’ll see.

Just got to keep on keeping on.

 

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Carry on, Sir.

I really am making an effort to blog more! It just happens the only time I really have the time to sit down and do it is when I’m either in hospital or it’s the middle of the night.  So this time I’m in hospital and have time on my hands.

Part of this admission was scheduled so I could have my port-a-cath inserted at the start of my treatment(5 nights of IV Aminophylline), and then I was more likely to be able to get a bed.

PORT_1

 

So I came in on Wednesday night with the aim to having my port put in on Thursday morning. We spent all day Wednesday ringing every few hours to see if there was a bed, and by 5pm they had one for me. I was well chuffed because the bed situation has been dire lately, but they got me in, so I can’t complain. Came in, had to wait a while to see a doctor because I came in after all the ward doctors had gone home. But got my amino up and going around midnight and tried to get some sleep. Was first on the list for theatre the next morning because of my latex allergy, so they came to get me about half 9. They farted around in the theatre for ages and by the time they actually got around to doing the procedure, I was a total mess. Even after 4mg of IV medazolam, I was still shaking and terrified. I think next time I’ll tell them I don’t respond very well to medaz. Problem was, that wasn’t the only issue. Around 10mins into the procedure, my heart rate started climbing. And climbing. And climbing some more, finally settling on 190-200. That’s a bit fast given that a normal person’s average resting heart rate is about 70-90. With me my average is about 110. So it was still way too high. They ended up having to give me a medication called adenosine which is known to cause problems with asthmatics, so they had to speak to my consultant and I ended up needing a lot of medication to then control my chest because when the adenosine didn’t work, they had to give me a beta blocker, which also causes problems with the heart. So my chest ended up going to shit a bit. So instead of being away for about an hour and a half, I was in theatres and recovery for about 4 and a half hours. Whoops. We still don’t know what caused the very fast rhythm (SVT) because I’m already on medication for my heart. There’s a suspicion it might have been while they were messing around putting the line in and it may have just tickled a part of my heart and it got a bit over excited. But who knows?

One thing i’m struggling with at the minute is my right hip. I know I’ve talked about how I’ve had both replaced, but my right hip is playing up something shocking. I can’t put weight through it, I can’t turn or twist, can’t lie on my sides or it kills and it’s generally making my life a nightmare. I’m back on crutches, which is a total nightmare for dripstands. I can’t go anywhere without help cause I can’t push a drip stand and crutch it. I used to be able to, but that was when the pain was different. This is a new kind of pain which is what’s scaring me a bit. It doesn’t feel like bone pain, it feels like muscle or nerve pain, which are both treated fairly conservatively. I think the Avascular Necrosis has left me very paranoid. I had an x-ray yesterday and they’re going to get ortho to come and see me and see if they have any idea what’s going on with it. Fingers crossed it’s something easily fixable.

I’m really looking forward to getting home. I haven’t been home in about 2 and a bit years. I don’t expect much to have changed, but there’s something about Monaghan that makes me happy just being there. I’ll get to see my nanny who I’ve not seen in forever, and specially after her brain surgery, I just want to give her a massive hug. Sophie’s coming with me and I’m really happy about that. I know we won’t be able to do an awful lot, but i think a week of enforced rest will be good for both of us. No hospital appointments, no work, no uni, just chill time. Definitely needed. Let’s just hope our flight back doesn’t involve the anti-terrorism police and ambulances being called to the plane (I’ll never, ever let her live that down)!

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It’s 3am and I can’t sleep, so my brain has decided it would be a good idea to blog.

Things are pretty much the same since I last blogged. I’ve still not got my medication sorted which is a massive pain in the arse. Thankfully since reducing down one of my meds to the lowest possible dose, my heart has stopped being such a numpty. Uni is stressful but I’ve pretty much given up for this year and I’m going to resit 2nd year and hopefully be able to give it a hell of a better shot.

Something I’ve been thinking about a lot is how people view me.  I get the idea that it’s “Vicky the asthmatic” instead of “Vicky the biomedical science student” or just “Vicky.” I need to try and get it out of my head that people want to know what’s going on with my health problems. Cause nobody really needs to know. I’m just Vicky, the student, who happens to have health problems. I think it’s more of a thing at uni with my lecturers because that’s how they’re introduced to me by my tutor. I’m not defined by my health problems, and I need to make it more of a priority that people don’t see it that way.

Uni is tough. My tutor wants me to try and sit two of my exams when I’ve barely been in this year and the exam period starts in about 2 weeks, if that. It’s going to be too much for me to try and learn 2 modules worth of work in that time frame. I’m good, and I like learning, but there’s only so much I can do. Unfortunately some of the medication I take has screwed things like my concentration span and my short term memory, so it would take me about 3x as long as anyone else to try and learn these things. I’ve e-mailed him twice saying I don’t feel I’m able to sit them, but he’s adamant. I think I may have to go above his head and speak to my course leader. Hopefully she’ll have a bit more of an idea, given her area of interest is lungs! I’ve been very close to just saying “fuck it” and dropping out lately. I’m struggling to believe I can keep up and that I deserve to be on the course. Biomedical Science isn’t what you’d call a ‘dossers degree’ and there’s a lot of work that needs to go into it and it is a difficult degree. The things getting me through those thoughts at the minute is looking at how I finished in first year and the fact that when I do get coursework etc done on time, I generally do really well in it. That and pep talks from my friends who have been in my position. I think I’d be fucked without them to be honest!

Looking around me, my room looks like a bomb scare. I’m going to HAVE to tidy it before I end up falling over something and end up going arse over tit. Cause it’s me and things like that happen. I’m hoping I can get it done this week, fingers crossed. I think part of it as well is I’m going to Ireland at the start of May to see family and I absolutely hate coming back to a total mess. A little bit of mess I can deal with, but this is beyond silly and I need to get on top of it. Depression really is good at just giving you fuck all motivation to do things. I just want to spend my days lying in bed playing my playstation or watching TV. They really need to get on top of my anti-depressants, I’m hoping that will be sorted this week, but we shall see.

Till the next time! x