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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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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.

 

 

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Making tough choices.

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

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

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

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

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

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

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

 

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

 

Until next time people x

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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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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!

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How things are.

So I’ve not really done a general post since I started my P365, and I thought it was about time I did a general update for everyone!

Overall I’m not doing too bad! I was in Ireland for a few weeks in Feb/March which was fantastic. I’ve not been able to spend any proper time with them all in months and missed them to bits. I’ve started to get my room sorted in terms of pictures on walls and storage. I’ve still got a bit to do, and I’m not sure what way I’m going to do the rest. I need to get a chest of drawers in my room but at the moment I just don’t have the room for it. I really need to get it tidied up within the next few days and then I should be able to concentrate on getting it all finished. I’m looking forward to it, because this will be the first time I’ll have my room done the way I want it, and done by me in my first flat. Another reason for wanting to get it finished is that we’re going to start fostering dogs! We are going to be fostering a dog called Lizzie from Weds. She was rescued from Bulgaria where she was found severely malnourished and tied up, about to be poisoned. Luckily she was rescued and flown over here and has now put some weight on. She still has abandonment issues and is very whiny, and she’s not used to walking on a lead, so she’s going to need quite a lot of hard work, but we’re both looking forward to the challenge!

Billy and myself have put our relationship on hold for a bit. He’s really struggling with his mental health at the minute, and he didn’t quite expect it to get to the severity that it is. Being in a relationship with me is hard work at the best of times, but doing it with a pretty severe mental health illness aswell is going to be hard. Right now he needs to concentrate on sorting his head out, and getting better in his way, and having a girlfriend who needs a lot of support and can be a major cause of regular stress is going to make things worse. So while he concentrates on getting his mental health a bit more stable, we’re taking a break. We’re still really good friends and he’s coming round tomorrow, but I’m a bit wary. The last time a relationship ended like this for me, it was quite messy. I was cheated on and hurt in a way that I still haven’t quite got my head round. But I think that this time it will be different, Billy’s a completely different guy and I do still trust him. With Chris it just didn’t fit and he wasn’t the nicest of people, so I was kind of happy when he ended it and I’m pretty gutted about this. But if it means he can get his head into a better place, then I’ll wait.

As you’ve gathered from P365, I’ve spent quite a lot of time in hospital. This for me isn’t anything new, and unfortunately it doesn’t seem to be getting any better. Luckily I’ve not had an attack requiring ICU in quite a while, and I really do hope to keep it that way. My chest does seem to be better between attacks though, and I find that makes it easier to enjoy other activities. My consultant is fantastic, and although he winds me up something shocking on a regular basis by refusing to change anything to help me stay out of hospital, he has managed to help me reduce the severity of my attacks. Although I still need a lot of IV medications and admissions, I have had worse and consider myself lucky.  My hip is still causing a large amount of problems, and since my latest admission, I have lost a large amount of my mobility and can no longer do a lot of things that healthy people take for granted. I now have to get help putting my socks and shoes on, can’t get in and out of the bath, and in our flat that means the shower aswell, and I now struggle to find comfort in any position apart from lying in bed. It’s as if my joint falls out of place and pops when I’m sitting upright on a chair. It’s a good thing I got a double bed lately, because it makes it a lot easier to have to spend the day lying down when I can have Cookie sitting beside me watching telly and can stretch out properly. I’m seeing my consultant on the 1st April, and I’m going to try and get it across to him that I want my hip sorting sooner rather than later now. I’m getting very bored of being held back from doing things because of my hip and just want to be able to get on with my life. He can’t use the excuse that it’s my chest either because my chest consultant wrote to him and told him that he wasn’t to use my chest as an excuse for delaying the operation to replace it. Hopefully he will do it soon.

We’re off to Grantham on Friday to see Kira. Kira finally had her hip replaced a few week ago, and I’ve wanted to spend some time at hers for quite a while. So we’re going to stay from Fri – Sunday all being well!

Here’s to next time folks, and thanks for reading!