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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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Tears and Fears

So it’s been a while since I blogged. Again, sorry, will try harder etc etc.

I think I only tend to go near my blog when there’s too much other stuff going on in my brain, and I need to get it out in some form or another, and blogging seems like a good plan, especially given that my blog is probably nearing 10 years old.

Start with uni I suppose. I’m on my easter break at the minute, but I’m semi debating not going back and just restarting 2nd year in September. It’s either that or I drop out completely to be honest. I’m struggling with my mental health and I just have absolutely no motivation to go into uni whatsoever. I’m falling asleep in lectures, not able to concentrate in labs and I’m of absolutely no use in the workshops because I didn’t know we needed to do pre-work and I haven’t it done. I do enjoy it when I’m there and managing to stay awake, the work we were doing in second year was really interesting when I could stay awake during the lectures. But we’ll talk about that one in a bit. When I’m there and have done the work, I don’t get half bad marks and do manage to keep up, but the problem is I’m spending more time at home than I am at uni and that’s just not really a good system. I end up a week behind because I’ve been in hospital and find it totally impossible to catch up with the work I’ve missed or if there’s any assignments I need to have done. I think given the bashing my mental health has taken this year, I’m probably justified in wanting to start again. I’m just hoping my tutor will agree with me. I’m in hospital at the minute, but once I’m out I’m gonna set a meeting with him and work out what the best step forward is for me.  But with the amount of coursework I’ve missed alone, I’m not sure how I can feasibly pass this year.

So, my mental health (MH)…. Things aren’t great. And they haven’t been great since just after christmas and new year. I went to my GP around about January saying I was struggling, and things have just gone down from there. I saw my psychiatrist around then and he increased my quetiapine. Things sort of got a little bit better, and then went downhill again and I got referred to the Intensive Home Treatment Team (IHTT). As it sounds, they look after people who need a bit of extra care in the community. They come out and see you every day or every few days to make sure you’re coping in the community and if not then they try and intervene before it gets to crisis point. They have their own psychiatrist on the team so even if you need to wait 4 months to see your own psychiatrist, they can have you seen by one as soon as possible. This is where my problems start to really go nutty. As it is, I’m on 3 main psychiatric medications. Quetiapine, Venlafaxine and Haloperidol. All of these meds can cause problems with the rhythm of the heart, and unfortunately in me, it’s affected my heart quite a lot to the point that they want me off all my current psych meds. But they didn’t tell me about this. Nope. I was discharged from hospital about 3 weeks ago now with a tray with all these changes in it and not a clue what was going on. They had put new meds in, taken out doses of things and muddled with doses of others. I was furious. While I accept my meds need changed, changing them all without even mentioning it to me was totally unprofessional and I was very annoyed about it. To the point I refused to take the new medications. I was meant to have an appointment with the psychiatrist on the IHTT but because I got admitted to hospital with my asthma, I was unable to attend it. I don’t know what they’re going to do about it now, I’m almost prepared for them to just say I’ve been seeing them for too long and they can’t see me anymore. Who knows. The only main issue I have with the whole plan is they want me to start Sertraline, which I’ve been on before and it didn’t help, so we swapped it to Mirtazipine, And I was on that for nearly 4 years and only changed it when I had my nervous breakdown.  As it stands, I’ve absolutely no idea what’s going on with my medication when I get discharged from hospital. I’m going to get them to make me a tray up, because even my poor pharmacist hasn’t a clue what’s going on with my medications anymore, and that’s never a good sign. I’m so scared of my head getting back to the state it was in Jan 16. That was a terrible time for me and the people around me to go through. I can’t go through that again.

Life is stressful at the minute. I’m getting more and more paranoid that people think I’m exaggerating my conditions or that I like the attention. I know that it has happened that people do it. I don’t even know if I do. I like to think I don’t, and try to tell things as they are, but admittedly my memory has gotten a lot worse being on psych meds so I sometimes get things wrong. Does that make me a drama llama? It’s really playing on my mind at the minute. My psych symptoms are going mad because they’ve reduced them all introduced a new one but it takes time for things to settle and I’m really struggling to deal with my head. That’s probably not helping/is helped by the insomnia. That kind of made sense in my head. I think I’m trying to say insomnia doesn’t help my MH, but my insomnia is caused by my MH. I think.

Although in saying that all, my nanny had the tumour in her brain removed last week. Nobody told me it was going on cause I’m a bit of a worry wart and would probably have spent the entire day panicking about it. But my 73 year old nanny, the OAP, managed 9 and half hour brain surgery and came out of it with absolutely no neurological deficits whatsoever. I am SO proud. Nanny is getting on in age, and although she doesn’t look it, she’s getting old. She’s done amazing and really has astounded us all. Ok, she had to go back to the hospital for a few days because her stitches came out and they wanted to check there was nothing untoward going on, but she’s totally OK and has no signs of infection or swelling on the brain. It’s one of the few times I’ve believed in god, because she needed someone looking out for her up there, that and a hell of a good surgeon! Mum has been fantastic with it all. She was up and down to the hospital in Dublin most nights, and is now staying out in Nanny’s so she can help nanny around the house as it’s Kieran’s (her brother) 50th birthday on the 1st April so there’s going to be a lot of people there and the last thing any of us want is nanny to go and overdo it and have a setback in her recovery. So mum is enforcing rest. Miffs me off a bit, when I was in hospital in Cavan she never came to visit. The only time she did was when James was in. It kind of hurts that she couldn’t come and see me when I was poorly but she can go to dublin for nanny every day. Different circumstances I assume. All of this brought it home to me that Nanny isn’t getting any younger. I’m the eldest grandchild and probably have the best relationship with nanny out of everyone, and the idea of losing nanny terrifies me. I’m hoping it doesn’t happen for a very long time, but I know it’s something that we have to start accepting is that Nanny and Pappy are both getting old and things do start going wrong as you get old.

Anyway, it’s like 1am, and I should probably go to bed. Being in hospital at night is crap when you can’t sleep. Poooooo.

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How do you make a head quiet?

This is one of those questions that nobody ever seems to have an answer for. They always tell me to just ignore the voices in my head. It’s really not that easy.

Today is a difficult day. I’ve had my PICC line put in, and while I’m happy I’ve got it, it’s annoying me that I need it. I know that I need reasonable access and that I spend a lot of time in hospital, but it’s a constant reminder that there’s something wrong and it’s a visible reminder. People ask me about it when I wear a t-shirt and forget to cover it. And I don’t like having to explain it to them, cause then you get the “Awww I’m sorry to hear that” stories. Having it is both a blessing and a curse.

My head’s being especially shitty today though. And there’s only so long I can try and have the argument of “you’re wrong, I’m not a shit person” before I start not have the energy for it. Which is a bad thing in itself. I’ve been struggling with my chest and I’m not sleeping fantastically, so I’m tired and feel rough. Never a good combination. I should be revising but the stuff I’m revising is ball achingly boring and I just can’t be bothered. Learning about 15 different fungi groups and how they all reproduce and grow just isn’t my idea of a party. So I ended up building lego with loud music on in an attempt to shut my stupid head up. Doesn’t seem to be working though, so I think I might just give up and go to bed. Seems the best plan, and the safest right now to be honest.

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Good news.

So I finally have had some good news. My PIP, which is the benefit I get for my disabilities has been renewed at the higher rates indefinitely. That’s a huge deal for me. It means I get to keep my car and I’m not going to have to reapply every 3 years. I opened the letter this afternoon and burst into tears I was so relieved.

Part of me though is angry and frustrated. The benefits system in the UK has faults. And a lot of those faults lie with the people whose job it is to decide “how” disabled you are. I count myself lucky that I can just about cope on a daily basis. All be it with a lot of help and sometimes more spoons than I have, but I cope. I have a friend up  in Scotland who is unfortunately in a much worse off state than me. She broke her ankle quite badly a few years ago, and as a result of neglect by her hospital, it never got treated right and to this day, M has to crawl around her flat as she’s unable to put any amount of weight through that food. M had a motability car, like me. And she was receiving the higher rates of what PIP used to be, DLA. When it came time to change DLA to PIP, she wasn’t awarded the marks she would need to continue getting her car and she has had to send it back. Now this to me is wrong. On so many levels. M suffers quite badly with her mental health, and her car was the only means of independance she had. She was able to get to wheelchair rugby in her car, was able to see family and get shopping in herself. Without her car she’s pretty much stranded in her flat. And this is why I get annoyed. I’m fortunate that I’m nowhere near that poorly. Thank goodness. But yet I get the marks needed to be allowed to keep my car based on my heart and lung issues? Nope. Not OK. But how on earth do you argue with these people? She appealed it and got nowhere. Went to MP and got nowhere. It’s shocking. I can’t understand how anyone can look at M and not see how much she struggles.

While I’m beyond appreciative of the help I do get, there is that bittersweet feeling that people who are worse off than me don’t get the help. It’s frustrating.

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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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Realising difficult truths.

It’s been about 6 months since my last blog post, and I can only apologise to the people who read my blog (and thank you for doing so, not sure what about my life is that interesting though!). I could give any number of excuses about bereavements, busy lives, being poorly, but ultimately I just didn’t have the time, motivation or mental energy to collect all my thoughts in one place. And with that opens my blog, that things have been difficult and I don’t like having to think about them.

So far this year I’ve lost 2 very close friends that I knew from hospital, and 2 people I would call good friends. All but one wasn’t expected and was totally unfair and before time. And it’s difficult to think about as Andrea was only 44, younger than my own mum, and Laurel’s death could’ve been prevented if the care she received from an unnamed doctor hadn’t have been negligent. That made the death of Laurel all the more unfair and although she passed in January, I’m still struggling to accept it. I had just started to when we suddenly lost Andrea, and being unable to attend the funeral hasn’t helped. I feel when someone passes that I need to be able to properly say goodbye, and that hasn’t happened with the death of any of my friends, apart from Laurel.

I’ve been thinking a lot about how my mental health has been affecting my friends. I feel more than ever like I’m bringing them down along with me. My closest friends are all struggling with their mental health and I’ve been watching them slowly go downhill for months, with the penultimate occurring recently with 3 of them all giving me cause toconsider calling ambulances, and on several occasions having to call ambulances for 2 of those friends. I honestly do believe that part of the reason they have crashed so spectacularly is that they’ve spent so long trying to hold it together for me, that they’ve been ignoring their own head’s getting bad, and as what happened with me, they are crashing and burning. Which has lead me to make the decision to not talk to them about what’s going on anymore. I’m going to avoid trying to come across as cold, but I think it’s going to be a learning curve. I’m going to have to learn to manage things on my own, specially as I got a letter yesterday saying it’s going to be 19months before they can offer me any form of psychology. I’m going to attempt to make use of the uni counselling services in the mean time, but I can’t and won’t bring my friends down anymore so am going to be dealing with this one on my own for a bit and allow my friends to concentrate on themselves. I think also that some of the symptoms I get and at the times I do are making me appear attention seeking. And that’s the last thing I want. I’d be more than happy to just crawl under a blanket and hide from everyone and everything and deal with it on my own, which is what I’m going to be doing. So the realisation that I’ve contributed to my friends breakdowns and that i’m quite possibly making things worse for myself has made me come to the decision that I need to not be as vocal in real life about my mental health. I’ll probably continue to blog about it, as I do find it helps to get my thoughts in one place, plus I like reading back over them, especially as this blog is coming up for 8 years old now.

I think this will also help the fact I’ve got my exams coming up. Having my exams will give me something to focus on and work through rubbish head stuff for. I know I’m probably going to end up overworking myself, but I’d rather overwork and pass my exams and deal with the consequences after, than not work enough and flunk them because I’d been too busy having a pity party in my head. I’ve got 2 lab reports I need to write plus a lot of lab work to catch up. I’m in hospital this week having my monthly infusion of Aminophylline for 5 days, then I’m hoping to just throw myself into university again. I can’t fault my university for the support they offer me. They are phenomenal and have not once pushed me to do more than I’m able. My tutor has given me his mobile number and I just have to text him and he will come and help me catch up.with work at the library or lab. I’ve been racking my brains for ways to thank both him, and my lab module leader as they are both unbelievably supportive. I’ve been considering moving out of Manchester, and the only reason I’m not at the moment is purely that I love my university and tutors too much.

My dad’s getting married at the start of April, so I’m quite looking forward to that. I’ve not seen a lot of my family on dad’s side for well over 3 years so I’m definitely looking forward to that. Plus the fact that my dad is getting married is a big deal. His last marriage ended in disaster and she was just a manipulative, horrible person. So the fact dad’s found someone he loves enough to actually marry makes me happier than I can put into words. Both my parents are finally getting back on their feet and that’s fantastic. Mum’s got Gerald and Dad has Irene. Here’s hoping it works out for both of them. I’ve warned both Gerald and Irene that if they hurt my parents, i’ll hurt them in ways they can’t even imagine. Protective daughter and all that….

I’m probably going to try and get home for a few days after my exams finish and after the family go to Spain. My uncle is getting married in Spain in May and although I’m unable to go, I’m going to try and get home to see my family afterwards instead. Sophie wants to come with me so it’ll be good for that. As well as that I want to try and take my friends out to Tenerife for a week during the summer. I need to speak to my grandparents about getting a room in the complex for a week and see how much it’s going to cost, but I definitely need a holiday, and so do my friends. It would be actually amazing to be able to just have a girlie holiday and lie by the pool with kindles and be lazy slobs in the sunshine for a week. Here’s hoping my plans happen!

I promise to try and be a bit better at blogging. Not promising anything, but I can try. Might do some blogs about being a disabled student. Uni have asked me to do a “Day in the Life of a Disabled Student” so once that’s been done I might start doing some regular blogs about the different things that I’ve found useful and how I’ve managed, or not managed so far.

So until next time!

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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.