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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.

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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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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.

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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 😦

 

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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.

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Keep on keeping on.

So the past few weeks since I found out about my shoulder have been pretty manic.

Digesting the news that I needed more surgery has been tough. Last year when I had my hips done I thought it was the last time I was going to need surgery for a long time and it just seems like when things start going right for me, something always comes up. It’s a shit one. But there’s nothing really that I can do about it except suck it up and get on with it. Yea, I’m not going to lie. I’m scared of the surgery. I met the anaesthetist on Tuesday and went through my options and whatnot and it seems like the only option is for me to have a general anaesthetic. My chest consultant has said so long as I’m admitted beforehand for IV’s and am sent to ICU after he’s happy enough for it to go ahead. Still scary though.

Ended up back in hospital spiking temperatures and feeling shite about 2 weeks after my last admission. They suspected I had a massive infection in my PICC line and had me on IV Domestos for a week. IV Domestos is evvvvillll! It makes you feel like poop in general but I throw up rather spectacularly on it.  But a week after being discharged I’m still feeling rather poop and am throwing temps a lot. It’s annoying me. I’m spending all day in bed trying not to fall asleep. Stupid body.

We did get to go to Aerial Extreme last week though. It was a year since I had my left hip done and I wanted to do something big to mark it. Unfortunately being a day out of hospital with ?sepsis wasn’t the best time to go and do it, but we’d already paid for it so I wasn’t going to lose £78 for it. I made it round the little course fine, but about half way through the big one my heartrate hit 190 and I got really dizzy and had to stop. It was the height of shit (bad pun alert). I was so angry that I had to stop when I’d been looking forward to it for ages. Hearts are totally overrated.

Things in other ways are going well though. I’ve had my application for DSA approved and am just waiting on an assessment for it now. And I’ve just checked my emails to find my acceptance letter from university. I squealed so loudly I set the noise trigger on the CCTV off haha. I’ve got my reading list aswell so I’ve been ordering some of my uni books and trying to revise stuff. I’ve not been in any form of education since 2011 and it’s scaring the crap out of me. I have enough problems trying to keep up with things without not having any idea how I’m going to keep up. I’m a hard worker though, hopefully it’ll work out though. Cookie’s sitting her driving test next week for the 4th time. I think she’ll pass it. The times she’s failed has been something totally stupid that had it have been a different examiner she’d probably have passed.

I’ve got a manic August planned. Dad comes home from Cambodia at the end of the month then I’m going to Edinburgh for a week to stay with him and Irene. It’s Irene and Sean’s birthday about a week after I go up so I’m gonna take them out for food when I’m up and do early presents. Then I’m back in Manchester for about a week then Cookie and I are heading to Ireland for a week. I can’t wait! We’re going to see my family but my best friend Michelle is home from Spain in August so I’m gonna see her. I’ve not seen her in absolutely ages and I can’t wait! Plus it’s Chris’ birthday when I’m home so we’re going to go up to Belfast and stay in a youth hostel overnight so we can see him properly. I’m so excited!!!

Bring on August.

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Christmas.

So I’ve not been a good blogger recently, and have let my blog slide a bit. But I do have a pretty good reason. I think anyway.

It’s been a manic few months. When I last updated in October things were looking pretty good in my life despite a lot of things going on and I was quite optimistic about things. Since then though, there’s been a few setbacks both with my own health, and Cookies. Since then though I’ve been back home twice. Once in November for my Nanny’s 70th birthday and then for Christmas. But along with the trips home came 2 different viruses that caused havoc with my chest, Cookie ending up on the verge of being resectioned and just a lot of things that have taken some getting over.

I went home for Nanny’s 70th birthday in November. She hadn’t a clue I was coming home and we had all been winding her up giving her reasons as to why I wasn’t coming home. We toyed with her a bit by putting up facebook status’s that only she could see saying things like I was unwell, that I was up to my eyes with things and basically trying to put her off my scent. But I’d blocked her from seeing my actual status’s saying I was coming home and was at the airport etc. She had said that the only thing she wanted for her birthday was that we would all be home for it, so we had been mean by making her think it wouldn’t happen! Little did she know! But as part of her Christmas/birthday present we had a photoshoot done with all the grandkids and got it printed for her. There’s 8 of us and it’s the first time we’ve all been together. It was a really symbolic day for me. I’m the eldest in the family, and there’s 5 years between me and Jessica, who is the next eldest. It was brilliant to see all my cousins. I hadn’t met my youngest cousin, Leah, so I really enjoyed meeting her. It was the first time I’d been home since my operation in July, so it was the first time the family had seen me without crutches. It meant I was able to run after the kids and throw them in the air and do airplanes with them. It really is the little things that make you realise just how lucky you are in life. For so long I couldn’t be the person I wanted to be because of the stupid hips, but now I can finally enjoy myself and my cousins.  Unfortunately though, I caught some kind of bug on the way home and ended up dosed to the eyeballs with the cold, which inevitably went straight to my chest and I ended up with pneumonia. That A&E trip was one of the ones that has left an imprint on me, and not for a good reason.

When you have brittle asthma, you tend to get treated a bit differently in A&E when you present with breathing difficulties. You’re generally brought into the resuscitation room (resus) and hooked up to monitors. Within about 10 minutes you’ve got doctors all around you, a neb going and several different people fighting to get some IV access. This time, I had the misfortune of bumping into a nurse in there that really doesn’t like me, and has told me it on several occasions. The best line she has come out with was “75% of R’s (consultant) patients have more psychological problems than physiological ones” or when I asked her if she had a problem with me got told “Our system has a note on it for all the patients who come a lot. We know when you’ve been to lots of different hospitals and when you are considered attention seeking.” Up until recently the problems I had with her though were just the things she said to me, but on this occasion it was a lot more. When I got to A&E, the triage nurse sent me through to resus. Ann (names protected etc) decided that I didn’t need to be in resus because I was hyperventilating and tried to get me moved to minors. Luckily whoever was in minors had sense and told her in no uncertain terms that it wasn’t happening. This was only the start of my problems that night. She put me in the very end bay in resus and ignored me for an hour. I jest you not. I saw no doctor, had no observations done, didn’t get a neb, anything. She would pop her head around the screen occasionally and tell me to slow my breathing down because I was hyperventilating and that I was making myself poorly. When I did finally get a neb written up by a doctor who passed me and saw how unwell I was becoming, she refused to give it to me because she believed all I needed was a paper bag. Shortly after this she moved out of resus and I was treated by a different nurse who immediately rang the chest team and got the A&E consultant to see me and I had gases done. In the hour that I had been waiting, my gases had become appalling. As it is my gases tend to be quite bad when I’m admitted, but when I get there and they start pumping me full of stuff, they start to sort themselves out. But because I’d been left for so long, they were really worried and had ICU come and assess me. It took 3x the normal amount of medications to stabilise me again and I was actually starting to get scared. That doesn’t happen often. Eventually I did start to stabilise enough to be moved to the wards on a monitored bed and saw my consultant that evening. I told him about my problems with this nurse, and from what he said, I’m not the first person to have had problems with her. Apparently the new psychologist on the chest team is going to be working with the A&E staff to improve the attitudes towards asthma. As a result of the way I was treated by that nurse, I decided that I was no longer going to attend that A&E because I couldn’t trust her to not do the same again. I was so much more poorly than I was when I arrived and it scared me. But it’s never good when as a severe asthmatic who does have to go to A&E a lot, that you are actually scared to go to A&E because you believe it will actually make you worse. I saw R in clinic a few weeks later and we decided one of the best ways to deal with the situation in the interim was to make me a care plan so that when I get to A&E, they have to treat me a specific way, and if that plan isn’t followed then he can get involved. When I attended A&E on NYE for an infective exacerbation of my asthma, that piece of paper was my saving grace. Granted that Ann* wasn’t there, but I was still seen and treated extremely well and quickly.

Which brings me on to Christmas! I was at home for Christmas this year. I was in Tenerife last year, so it was a bit of a different setting! But it was the first Christmas in five years that my grandparents were home for it. They have an apartment in Tenerife so spend a good part of the winter out there so it was lovely to have them home this year. While I was home I went up to Belfast to see some family and friends. I got to see Kathleen who is like my adopted Grandmother, (My grandma (dads mum) was Kathleen’s Matron of Honour at her wedding, and her husband and my granddad were best friends) Lorraine who I’ve known for as long as I can remember, Aunt Peggy, who was granddads only sister. It was extremely important that I got to see her though because she isn’t well and we don’t think she’s got a lot longer to live. It was an extremely difficult visit, but I made her smile a bit and I feel at peace now with her should the worst happen. I also saw my adopted big brother, Chris. I’ve probably already rambled somewhere else about Chris, so I’m not going to go into details, but he’s my big brother, best friend and awesome aspie! I got thoroughly spoilt this year, but to be honest, It was much more fun watching mum and TJ opening their presents. For the past few years we’ve not really been able to know what the best things to get mum are, but I really put thought into it this year and knew what she wanted. But she also had a stocking this year for the first time. When we were little babies, my aunt in Canada made us all personalised stockings so they’ve always been up at Christmas. But this year even the dog had one and mum didn’t. So we decided it wasn’t very fair that we all had stockings and mum didn’t. So we got one that you put a picture into of the person. I didn’t want to just print out a picture of mum and stick it in, that’s boring! So I got mum to show me how to use her sewing machine, and spent hours and hours learning how to use it. I stitched 4 pieces of fabric together and then used the glue gun to stick a piece of cardboard onto it, and then her picture onto that. That meant more to her than just sticking the picture in anyway, because she knows how long it took me to do it, so that was cool to be able to do. But we put loads of nice stuff into it like ribbons, lush stuff, chocolate and little bits and bobs. Mum got spoilt this year and it was fantastic to be able to do it.  This was a good christmas for me though, because I got to bring Billy home to meet the family. He got the ferry over on the 27th, so I went down to Dublin to pick him up and get him safely back to Monaghan. Unfortunately by this stage though I was loaded with yet another cold and felt like hell, but it was worth it to get to see Billy. He got to meet most of my family and thankfully he got on well with them all. It’s hard not to like him though! Unfortunately while he was over I was completely loaded with the cold and felt like crap for most of it, but I did try and get out of the house with him a bit. But he was really nice about it and didn’t mind just sitting in front of the fire with me. We got the ferry back on NYE because it was going to work out stupidly expensive to fly so we got the ferry to Holyhead, then I got the train back to Manchester via Chester and one of t’other stations in Manch. That was a difficult journey. I was feeling absolutely horrific and knew my chest was going to throw one at any moment. Billy got the train to his parents in Wales to help out at the bar so I was on my own which was not fun. As soon as i got home, I threw my PJ’s, phone charger and tablet into my bag and called an ambulance. Considering it was NYE, the ambulance was out in 10 mins and I was in resus in A&E being sorted within an hour of me calling it. Don’t get me wrong, I know that the hospitals are up shit creek at the minute, but I can’t fault the care I received! So I spent yet another NYE in hospital, and spent a few days on IV antibugs and Aminophylline. Still not feeling 100%, but definitely feeling better than I was! On top of that my consultant has finally agreed to give me some decent IV access and I’m having a PICC line put in.

Am quite optimistic about this year. I’m starting uni in September, I’m mobile and able to do so much more and I’ve got a fantastic boyfriend and best friend. Most people make New Years Resolutions, but I don’t understand why they have to be ones that start only on new year. And it’s not so much a resolution as just common sense for a lot of things. So I have aims that I want to achieve, and it’s not something I have a lot of choice in. It’s things that if I want to get better in myself, I have to do. So this year I want to loose 25kg, start uni, get my elective admissions sorted and get to the gym more.

So dear followers (if anyone actually reads this!), Here’s to 2015!

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Growing up.

I’m back in Ireland for a week. It was very much hit and miss as to whether I would get over. I ended up in hospital in SVT 3 days before I was due to fly, and only got out on Wednesday, which was the day I was due to fly. Luckily I was able to rebook it, and flew on Friday instead.

I flew over primarily for my little brother’s confirmation. The confirmation is one of the seven sacraments and it’s meant to be you as a person accepting the responsibilities your parents swore to undertake at your baptism. Being raised as a catholic, do good by the church and believe in your faith etc, so it’s signifying you growing up. You make your confirmation around the age of 12 in your last year of primary school when you are preparing to go into secondary school. I made mine exactly 10 years to the day before TJ, and it was a major sense of dejå vue. When I made mine, everything in our family was right. James’s drinking wasn’t a huge problem, there was a big party with a bouncy castle, big buffet, friends and the whole family, including James’ family, mum’s and dad came. This time it was Mum, TJ and me at KFC. I’m sure if he had wanted a big thing, mum would’ve made it happen, but it just shows you how things have changed in 10 years.

My little brother is growing into a good looking, smart young lad. He’s been through hell in the past year but he’s so resilient and I admire so much about him. He makes me smile on a daily basis, and serves as a reminder to me as to why I fight to stay well. He’s such a good kid, and would do anything for anyone. He is sensitive, caring and kind, and his idea of enjoying himself is sitting watching a DVD with his family, not going out drinking like so many kids. You ask him what he wants to do with his life, and he will tell you he wants to look after his family.

I’m so proud of the lad my little brother is becoming, and I hope that over the next ten years he continues to bloom into the best man he could be.

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Project 365 – Week 9

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Day 61 – 1st March – Went into town with mum and nanny today. Had a dander around the town and went into McDonalds for a Shamrock Shake. They generally only bring these out over St Patricks Day, and don’t bring them out in England so when I get home ad they have them out, I do enjoy them! It was nice to be able to out and enjoy some time with family 🙂

Day 62 – 2nd March – Started knitting today. Haven’t been knitting in years and mum does it quite a lot so I decided I was going to give it a go again. I’m not very good at it, and can’t really do a lot with it. But I can knit a scarf! I might actually get good at it and do it a bit more, but for now I’m content just trying to knit simple things haha. It’s meant to be something I’ve tried doing loads of times, but I’ve never managed to keep it up. So will see if I can manage it this time!

Day 63 – 3rd March – Have been doing this for TJ for about a week. He wanted me to draw something for his room but wanted something with a lot in it. I’m rubbish at putting pictures together, So I’m not as happy with this as I could be. But he loved it, and put it up in his room, so as long as he’s happy with it, I’m happy enough! I still like drawing though, but think I will avoid doing anything like this again.

Day 64 – 4th March – Took nanny for lunch today. She had originally wanted to go to McDonalds, but I wanted to take her for a proper lunch and McDonalds didn’t count as that. So we went to one of the local restaurants in Monaghan called Dinkins. It was really nice to be able to do it and we both really enjoyed our lunch. We both had sandwiches and a cake for afters. I don’t get to spend much time with nanny, and I had originally extended my trip for a few days because I wasn’t going to be able to get to see her otherwise, and despite having done that I wasn’t spending much time with her. So getting to do this was great.

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Day 65 – 5th March – Flew home today. Went home from Belfast City which was something I hadn’t done before. I’ve flown from Belfast City before when I was originally moving to England, and once when I flew to Manchester shortly after moving. I quite like flying from Belfast. It’s quite a small airport and is a lot easier to get around than Dublin airport. Mum and Nanny drove me up and I tootled through security and got myself something to eat. Was nice to be able to not have to worry about buses and stuff. I much prefer being able to get lifts but sometimes the only option is the bus.

Day 66 – 6th March – Back home and back into the normality of appointments. Today was endocrinology. it was my first appointment with them, and I’m not feeling as if I got any straight answers from them. The only firm answer I got was that I don’t have an insulinoma as Dr N suspected which was a relief. But things are still very confusing to me. He spoke about my adrenals, the steroids, my hypos and other things. But none of it made sense. They also haven’t written the clinic letter from the appointment yet, and this is now months on. I have chased it up several times but heard absolutely nothing.

Day 67 – 7th March – Went for pancakes with my friend Chris today. Chris stayed overnight last night and i’ve not seen him in ages. He’s from Belfast and I went to school with him when I was about 10. He’s my oldest friend and even though over the years we’ve lost touch a few times, we’re still best friends. He’s been there for me through some really rough times and I love him to bits. We’ve gone out a few times but we work better as friends and I’m happy with things like that. But there’s a place near us that do the most awesome massive crepes. You can get all sorts of different fillings in them and they’re amazing. Was good to be able to get out and have some time with him!