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Carry on, Sir.

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

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

PORT_1

 

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

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

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

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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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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

 

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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>