0

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.

Advertisements
0

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.

0

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>

1

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!

0

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.

 

 

0

Making tough choices.

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

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

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

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

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

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

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

 

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

 

Until next time people x