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.

 

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)!

Long time no blog…

So it’s been a while since I’ve blogged. I don’t really have any excuses except that I’m lazy and a lot of the time I just can’t be arsed sitting down and doing it. So I’ll try and sum up the past 6 months as well as I can!

To be honest, I can’t think of many big highlights. I went camping with Cookie and Sophie again in September the week the kids went back to school. It wasn’t as good as the first time, mainly cause Sophie had a kidney stone and spent a lot of time curled up in pain, which accumulated in a trip to Bangor A&E one of the nights. Well, it wouldn’t be a holiday with us 3 unless something like that went wrong. Didn’t help matters that Cookie managed to forget the bag that had her clothes in it. What a plonker. Meant she had to borrow clothes off Sophie and myself and then go and spend money on some more. Only she could forget to pack her clothes… *rolls eyes*.

After camping I was meant to get back to uni, but I was still really struggling with my chest so unfortunately it wasn’t able to happen. I managed to start getting back properly just before Christmas though.  My GP gave me a letter to defer my exams till August so I get a bit of a reprieve. I really need to get on top of that and make sure I get it sorted. It should’ve been in on the 18th but my head’s been really shitty and it’s been the last thing I could be arsed dealing with to be fully honest. I’m starting to seriously think about dropping out. I love my course and I love learning the stuff, but at the minute with my physical and mental health both struggling, I don’t know how long I can get away with winging it. It’s not helping that some of my medications are making me have a rubbish concentration span and I barely manage to stay awake through full lectures even if it’s something I really enjoy. I’m going to see if my psychiatrist has any ideas for switching my medications so that I’m not fighting a losing battle with uni work.

Christmas was a lot better than I was expecting. Mum and TJ were in London with Gerald and his mum, so I asked if I could go and join them and they were good with that, so I got to see my mum and TJ which I really needed. It’s kind of helped my home sickness, but I do still feel like I need to go home. It won’t be for a while though, I can’t really afford it at the minute. I spent New Year in Edinburgh with Dad. I got the train from London to Edinburgh, which apart from a 5 hour train journey in Poland, was the longest train journey I’ve ever made. I was bored out of my tree. Irene wasn’t very well and had a kidney infection so she spent most of my trip up there in bed. I got to spend some time with daddy though. We went to the cinema and to play pool which was good.

I’m back in hospital at the minute and someone in my bay has the flu. The entire ward has been shut because there is patients with the flu absolutely everywhere. It’s annoying because it means we are all on Tamiflu and anyone who comes into the bay has to wear a mask. Grrrr. I’m hopefully getting out on Monday and then back to uni on Tuesday. Will see how I’m feeling really.

I wanna go to sleep now, but I’ll try once again to blog a bit more often.

Much love x

 

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>

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!

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.

 

 

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 1^st 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 1^st 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

Rough seas.

I’ve kind of neglected my blog lately. I do think about it quite a lot,  but it’s finding the time, energy and motivation to actually take the time to start writing. Even more so when you have more revision to do than you can shake a stick at.

So. Since the last time I’ve posted….

It feels like a lot has happened, but in reality it hasn’t. We changed my anti-depressant to a completely different one, I’ve had 2 assessments by two different branches of the mental health trust, I’ve had surgery on my shoulder (Oh yea, that kind of counts as a lot…) and then all the general shenanigans that I get up to.

So I reckon I should just start with the first thing and work my way down. We (GP, me and Sophie) decided that it was time to do something about my antidepressant. It’s going to be a hell of a while before I’m seen by psychiatry (more on that later) so he’s decided to change it and see where we go. I have swapped from mirtazipine which I’ve been on now for about 2 years to Venlafaxine, which tends to be used more in severe depression but it is difficult to manage because you can only increase it every 2 weeks and it can mess about with your heart a bit, and because I’ve got a history of SVT, they’re being a bit cautious. He increased it again on Wednesday so we shall see how that goes. I’m starting to get frustrated with the amount of meds I’m having to take, and it’s getting more and more difficult to make myself take them. It’s frustrating me that nobody trusts me with more than a weeks worth of meds. I can understand why it’s happening, and I’ve been the one having to make that decision on behalf of someone, but it still isn’t easy. I’m losing control of something that has such a big impact on my life and I don’t like it.

I had an assessment with the Community Mental Health Team (CMHT), who are tasked with looking after people with severe mental health problems in the community. , which took 4 appointments. It doesn’t normally take as long, but apparently I’m “complex”. Not going to deny that! But the woman doing it was a total tosspot. She was so rude it was unbelievable. I took both Cookie and Sophie along to different appointments to make sure it wasn’t just me taking things the wrong way, but they both said she was totally out of order. She didn’t quite understand that there’s things I struggle to talk about, and that I may not necessarily be able to very easily. Making me feel bad by telling me I don’t want to get better and that they’re never going to be able to help me isn’t helpful. It was an assessment and she really did push me too much in them without giving me any coping mechanisms to deal with the emotions that she brought back to the surface. I had only just got to the point with my PTSD that I could walk past resus in A&E without having a panic attack and she decided that she wanted me to tell her exactly what happened that night. Despite me explaining I really didn’t want to talk about it for self preservation reasons, and I’d appreciate it if she would let Cookie explain it, she wasn’t having any of it, despite me bursting into tears. My psychologist and GP where absolutely furious with her for doing it. My psychologist told me she didn’t actually need to know the specifics for the purpose of that assessment. As well as that, there’s a rule in Manchester that if you miss two appointments with the mental health trust, even if you have a valid reason (eg being in hospital) they’ll discharge you. Not even 2 consecutive appointments, but 2 appointments at all. She wasn’t willing to discuss it with her manager because apparently too many people were taking the biscuit with it. I can understand that there was people taking the piss, I really do. But when I have a discharge letter from the hospital saying I was an inpatient, surely that counts as a valid reason?! In the end she decided to refer me to the Early Intervention Team (EIT) who are there to help treat the early stages of psychosis. So I had to have an assessment at home with them. That was only the one appointment thankfully, but they decided that my psychosis isn’t actually psychosis but is anxiety and PTSD related. Not sure I agree, but that was their call.  So they referred me back to the CMHT and I had to see the tosspot again yesterday. She’s decided she wants to see me for 6 appointments.  I’m not happy about it. Don’t get me wrong, I’m grateful for the help. I understand that there are people who don’t get any help. But she makes things a hell of a lot worse, and I don’t think I have much room to get worse at the minute. But we’ll see.  I just want to be able to get on with my life the way it was before January. It’s one of those vicious circles that once you’re in, it’s damned near impossible to get out of that I want to get back to uni, but going scares me into having a panic attack, but getting back is going to help my head.

So I had the surgery on my shoulder that I’d been waiting on since last year in April. Feck me that was tough. I was in hospital for Cookie’s birthday again though which sucked. But I did my best and made sure she had some presents to open and she brought them and some cake up on her birthday. I was in for a few days beforehand for IV’s to get my chest right because I had to have a general anesthetic, which in people with naughty lungs is a scary concept. The anesthetist I had seen for my assessment a few months prior had been absolutely lovely. He had said I could have someone in the anesthetic room, a PCA post op and would be allowed someone in the recovery room with me. The anesthetist who actually did my operation wasn’t having any of it and I had to pretty much argue the toss to allow Sophie into recovery. He got the huff when I put my iPod in when I was in the anesthetic room because I was starting to totally panic and was just a general arse. He told me he wasn’t having any of it the night before, so needless to say I didn’t get much sleep that night. My chest kicked off a smidge when I was in recovery and I had to have some magnesium and hydrocortisone, but apart from that it was all good. I think I was in for about 2 weeks in total, but my shoulder is a hell of a lot better now. I spent 4 weeks in sling instead of 3 because I managed to (being me) fall on my sore shoulder about a week post op. I will say though that I’m terrible at doing my physio. I’ve been trying to do it a bit more in the past few weeks, but I am absolutely terrible at remembering. But even despite that, it’s doing well. I’ve a good bit of movement back in it, and I’m slowly building up the strength in it. I’m still not fully trusting of it, but it was the same after my hip replacements. It took me months to trust my leg to take my weight fully when I was going up and down stairs. It’s only been recently that I’ve trusted them enough to go down stairs without holding onto the banister! But I’ll get there, I’m looking forward to hopefully getting back to the gym. I’m not allowed just yet, but I think once I hit 3 months post op in July they’ll let me.

I’m going to be sitting all my exams at the end of August/beginning of September with all the resits. I’m not actually sitting any of them as resits, but because I missed 2 in January because I was in hospital, and with having surgery and my mental health being so rubbish, my GP, me and uni all decided that deferring my exams to then would be better for me. It put less pressure on me because there was no way in hell I was going to be ready by May to sit the exams. Bearing in mind in two of my 4 modules I have to do 2 semesters worth of revision. So I have a kind of revision plan at the minute and I’m really trying to stick to it. Hopefully I will and it will all pay off. As it stands I’m on the fence about repeating first year so we will see how things go when I sit my exams. Not going to lie, I’m nervous as feck, but uni have been fantastic. Because I missed the majority of my labs, I wouldn’t be able to move onto 2nd year because of that. But my module co-ordinator is going to work with me during July and August to catch up and get me to the level for the must pass exam. So here’s hoping!

Trying to think whether anything else big has happened. I went to Edinburgh to see Dad on Father’s Day. He hadn’t a clue I was coming, and seeing his face when he saw me coming up the stairs has to be in my top 15 moments ever. It was good to see him. I’ve not seen Irene or Sean since November, and although I’ve seen dad since, it was only briefly because he came down for the day.  So it was good to spend some proper time with them all. Sean’s voice has broke and he’s getting so grown up. He’s just a little bit older than TJ, but he’s so much more mature. With TJ’s learning difficulties he’s very naive and innocent and can’t really look after himself to any degree. Whereas Sean is a lot more independant. Hopefully though we will get TJ to that level and he’ll be able to be to live independantly. While I was in Edinburgh, I had a massive haircut. I’m still undecided as to whether I like it. I think it’s too short and I look like an oompa loompa, but everyone else says it’s lovely. I think it’s nicer when I can get it tussled and not like a bob. It actually means I have to use products on my hair for the first time in my life. It’s mad. Although the advantage of having it dried in an hour and it taking about a quarter of the time to shower is a massive one. It’s whether or not I can keep it this short or not! I think I might let it grow a bit, and keep it just above shoulder level. But time will tell.

 

Unfortunately a few months ago we lost Dolly. Dolly was my Jack Russell Terrier back in Monaghan. She was a total legend. She got me through the worst of stuff with James and was absolutely epic at making me laugh. She had a heart attack when mum went to pick her up from Nanny’s. I was, and still am totally devastated. I can’t imagine going home now and Dolly not being there. It’s going to take some doing. Miss my puppy 😦

 

If you’ve managed to get to this point and not fall asleep, I congratulate you. I promise to try to be a bit better at blogging. Hopefully once my head starts to wise up, things will get a bit easier and I will have a bit more motivation to do it. Watch this space.

Dear best friend

Dear Spud,

 

As you’re lying beside me snoring and making dodgy sleepy noises (I just poked you to check you are breathing by the way), It reminds me how lucky I am to have you.  It’s not easy being friends with me. I have a lot of baggage. But when you have as much going on in your life and you’re doing as much as you do for me is one of those things that is just amazing.

On the 11^th March last year you posted on a support group we both use saying you had been transferred to my local hospital and I asked if you wanted a visitor.  You’d been quite poorly yourself and were quite far from home. I remember bringing you smoothies and juice, a colouring book and markers and a small cuddly frog (there may have been other things, but I can only remember those and you turning down a bacon sarnie on the basis you’re a rabbit). It was the beginnings of a friendship that I hope I’ll never lose. I didn’t expect to speak to you again for a bit when you were discharged because you’d been really poorly. Although I was worried about you, I thought you needed some space. But you messaged me when I posted a message on Facebook saying I was having a rubbish day and felt poop, both mentally and physically. This was only about 3 days after you had been discharged, so as much as I was pleased you’d messaged me, I was totally surprised. But it was yet another reason why I think you’re fantastic. You spent ages talking to me that night and I was able to go to bed and not have a total meltdown over something, that looking back, probably wasn’t actually that big a deal. But a year down the line, I’ve totally lost count of the amount of times you’ve done the same, sometimes even staying up until silly o’clock with me.

I remember getting the train to come see you about 3 weeks later and we spent hours just sitting talking and putting the world to rights. We both talked about stuff that I’d never even spoken to my lifelong friends about. But I trusted you as if I’d always known you. I think because we’ve both been through so much and have similar health problems, we just got each other. You understood what goes through my head when I get frustrated about the restrictions my asthma and joints place on my life. Very few people truly understand that, and it was so good to finally have someone that I didn’t need to try and explain myself to when I didn’t have the energy to do something that most people would expect me to be able to do without hesitation. And you knew about “The Spoon Theory”. Bonus. I know there’s other people around me to talk to. And I feel truly grateful to have them. But I don’t know. You just understand so much more. You understand the fear of ABG stabs in A&E. The fear of cannulas in certain places and the fact that sometimes I just want to stay in bed and not move because I just don’t have the energy.

In January this year, my mental health crashed in a big way. I overdid it with revision for uni, staying up until 2/3/4am and getting up about 8am again for about a week, it was my stepdad’s 2^nd anniversary and things were going downhill with my chest, fast. This triggered a breakdown for me, and you were the first person who picked up on it and acted on it. You helped talk me down when I was psychotic, and drove over and dragged me to the GP about it when my exams finished. I don’t think I’d have had the guts to go on my own, and although my flatmate would’ve taken me eventually, I didn’t tell her how bad things had gotten and I don’t think she’d have gotten the message across in the same way. But you started the ball rolling in getting me the proper help I needed. You stayed with me for about 2 weeks in total, and every night when I was having a nightmare, you’d wake me up, help me calm down and then get back to sleep again. When I was absolutely terrified of something most people would consider stupid, you didn’t patronise me or make me feel small for it. You took me back to the GP again and again until they finally started doing something. I went through a phase where I seriously struggled to take any of my medication, which when you have multiple medical problems, isn’t really a sustainable scenario. You helped me get to a point where I was able to take most of them, and when I went into hospital with my chest, you made sure they knew I was struggling.

When I had surgery last month, you came to stay. You got up at 7am to be at the hospital with me before they brought me down to theatres because you knew how scared I was. You demanded they let you into recovery afterwards despite the fact they don’t normally allow it. When the anaesthetist changed everything they had promised me the night before the operation, I was 90% close to telling them they weren’t doing the operation, signing out and going home. I was scared beyond belief. But between you and Nugget, you got me to a place that I was able to get some sleep and wasn’t completely terrified. I’d let them operate. You made sure that the staff knew I was scared and have done so many times beforehand.

Things have been pretty rubbish in my life lately, but things haven’t exactly been easy for you either. You’ve had a lot to deal with in terms of your own physical and mental health, and have juggled a job, lots of health problems and coming over to see me at least once every 2 weeks since January. Most people wouldn’t have done the amount you have for me, purely because you have so much in your own life to deal with. But you stuck by me. And as much as I’ve told you it over and over again, I don’t think you truly understand just how much this means to me. Life’s difficult when you have a chronic illness. Looking after yourself takes up so much energy, but when you add in looking after other people, it increases the energy need tenfold. But you do it and don’t moan about it or make me feel bad for asking.

I feel safe with you around. Things aren’t as scary and I know that when I have a nightmare, panic attack or become psychotic, you will help as much as you can and if you can’t help at the time, will make sure Nugget knows I’m struggling. I know lately you’ve had to make some pretty tough decisions for me and I know you think I hate you for making those decisions, but things couldn’t be further from the truth. I’ve been the person having to make tough decisions that you’re not sure are the right ones, but I promise you from the bottom of my heart, I’m not angry and I’m not bitter. And I will never, ever hate you for making those decisions. If anything, I’m thankful that you made them. Because as much as it might anger me in the short term, in the long term I know it’s the right thing.

So thank you. Thank you for sitting with me in A&E. Thank you for making me be sensible when I want to sleep and should be taking steroids and drinking Lucozade (and stabbing me with hydro when I throw a strop and don’t take my steroids). Thank you for staying up until 2am and talking me through a psychotic episode. Thank you for being able to explain things to my GP when I can’t. But most of all, thank you for being someone I can call my best friend, who I can pour my heart out to and will never, ever judge me.

Love you Spud.