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Finally getting stronger.

Well, after months of posts where things have been a bit negative and down, things are finally getting better.

I love being able to say “I’m good!” when people ask if I’m ok. I got back from Tenerife on Wednesday, and although I didn’t finish my holiday on a good note, having had an argument with dad and having a terrible return flight that involved delays, horrendous terbulence and an hours delay at the baggage carasol, in the past few days, I’ve seen just how things can improve.  But while I was away I got to sunbathe, spend some time with my stepbrother, Sean and got back in the pool again. Going back over for christmas though, so that’ll be something to look forward to. It’s a busy few months!

I’ve come back and for some reason, I just feel better. I know people say holidays always make you feel better, but for some reason, I do genuinely feel like I’ve turned a corner. I’m going to be seeing a new pysch soon so I can hopefully start getting somewhere with my mental health, and *whispers* at the minute, my chest is relatively behaving. I’m having the odd blip early in the mornings, but that’s not unusual for me. I’ve now been out of hospital a month, which is seriously good going for me. Lets hope it continues. I’ve also had some of my painkillers changed about. My patch has been changed from BuTrans, which I’ve been on for about 2 years, to Fentanyl. So hopefully I’ll be able to get the pain in my hip more under control.

Next week though is going to be epic. I have my little brother coming over for 10 days. He hasn’t a clue it’s happening, and I’m extremely excited about it.  It’s going to be his birthday while he’s over, so I’m going to take him to Legoland and Old Trafford while he’s over so it’s going to be a fantastic time for him. It’ll be the first time I’ve had him over here or he’s been away without mum for longer than a few days. I could really do with some good vibes that I stay well while he’s over, because the last thing I want is to end up in hospital while he’s over.  But I’m going to be seriously sensible and do everything in my power to stay well.

Here’s to a fab few months.

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World Asthma Day 2013

For those of you who care, today’s World Asthma Day. It’s also Asthma awareness month. I think it’s been a pretty big part of my blog since I started, but lately I’ve been trying to not have my entire blog focused on it. But being WAD I thought I’d do a blog on it. But instead of doing a big essay about it, I’m going to do a question and answer type thing. Got this off some website I was having a look at the other day. Can’t remember the name but remember some of the questions.

When were you diagnosed with asthma?
– I was originally given my first inhaler when I was 14. From 14 till about 18 it was relatively well controlled, with the odd course of steroids and doctors visits and adding on a couple of different inhalers and tablets etc.

What made you visit the doctors in the first place?
– I used to play a lot of sports and I noticed I was struggling to catch my breath when doing them and that my chest got quite tight and I was coughing a lot. Our coach was a nurse and was noticing it aswell and asked me did I have asthma, and when I said no, suggested I went to see my GP about it.

How well controlled is your asthma?
– At the minute? Not very. I spent a lot of time in hospital and have been in Intensive Care several times because of it. I now take a lot of medications for it and am on long-term steroids and home nebulisers to try and keep me out of hospital.

How does your asthma affect your day to day living?
– Quite a lot. Obviously with having a lot of attacks and spending a lot of time in hospital, I can’t really plan things in advance, and when I do, I have to set up contingency plans incase it doesn’t happen. Because my family live in other countries, booking flights to see them is quite difficult because on several occasions I’ve had to cancel flights because I’ve been in hospital. I’ve also ended up quite ill in Ireland when I was home for Christmas which was rather nasty. But I’ve decided now I’m going to start booking flights regardless and just making sure that I do my best to make sure I’m as healthy as I can be when I go away, and have things in place incase something did happen while I was away. Also because of the medications I’ve been on for it, it’s caused a lot of problems with other parts of my body, mostly my joints. As a result of this I’m facing a hip replacement this year on my right hip, and one on my left hip in the not too distant future.

Have you found any positives to having asthma?
– Yes. I have made so many friends through Asthma UK and have received fantastic support through the website. I’m now living with my best friend who I met on Asthma UK and when I moved to England the first time, I moved in with someone I met on AUK. I feel very priviledged to also have been to the House of Lords and to have spoken at conferences in different parts of the country about my asthma and how it’s affected me. If I didn’t have asthma these opportunities wouldn’t have arisen. Although asthma has taken a lot from my life, it has also given me a lot.

What advice would you give any people who have been diagnosed with asthma?
– Don’t be afraid. It’s not the end of the world being diagnosed with asthma. It might sound scary, and if you’re reading this, I’m not the best person to speak to that won’t scare the crap out of you. But it’s only 5% of people with asthma that have as bad control as I do. With the right care and treatment you can be easily controlled. Don’t be afraid to ask questions. You’re doctor or practice nurse are there to help you. They’ll explain how to take your inhalers, when to get help and will be there to help you when you’re struggling and should always listen to your concerns. The AUK Asthma nurses are fantastic for getting advice and you can find out if you should go to the doctors about this problem and what the best way to discuss it.  But don’t be afraid to ask questions to your doctors or nurse about it. And the AUK forum is also a great place for starters.

But anyway. I have asthma. It doesn’t have me. I try and do as much as I can despite it and I have been SCUBA diving, jumped off the Sky Tower in New Zealand and been on adventure trips with school.  But things are going well for me at the minute 🙂 Apart from my hip I’m doing quite well. I’ve got the dentist tomorrow, which is slightly scaring me and then my pre-op assesment on Thursday. Now that is scaring the shite out of me. I’ll find out what’s going to happen in my op and whether they’ll let me have a general anesthetic.  Found out last Friday aswell that we should be moving into a two bedroom flat pretty soon.  With the new bedroom tax that’s come in, a lot of people are desperate to get into 1 bedroom flats, whereas we’re desperate to get out! It’s a win-win situation!

But I shall update at some point soon about how the pre-op went. Not that anyone reads this anyway. If you do read this, please comment so I know!

Ta!

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Ok, so positivity isn’t the way the world works.

The past few weeks haven’t been what I’d call positive. I was admitted to hospital again with my chest. It’s getting a bit boring now, but to be fair I’m starting to take the opinion of “Meh, another one” and get on with it.  Was a relatively short stay this time though, but how I got admitted is the funny part. I’d a scheduled diabetes review with my practice nurse. She’s absolutely lovely and she always makes sure to book a double appt for me so that we don’t feel pushed for time. But my Hb1ac which is the main blood test they do to check your overall diabetes control was fantastic.  So anyway I was coughing a bit, well, a bit more than normal for me and was being mono-syllabic in the hope that she wouldn’t notice I couldn’t put a sentance together. Unfortunately she knows me better than that and had an ambulance called before I had a chance to argue. I really wasn’t impressed. I wasn’t expecting any of it and felt really pissed off because at the time I didn’t honestly feel I was that rubbish. But I soon realised that she made the right call. I’ve an appointment on Tuesday and I’m gonna bring her a box of chocs and a card because I think I was a bit mean to her for calling the ambulance.

But the one upside is I’ve booked my flights home to Ireland for a bit 😀 Well, I’ve not booked the return flight 😀 I’ve not decided what date I’m coming back on yet.  I might book it later, but I like knowing that I’ve got the openness for coming back. I can’t wait to see my family. I’ve not seen any of them since Xmas and after my op on my hip, I’m not allowed to fly for 3 months, so I can’t wait and am going to make the most of it. 

Speaking of my op, I’m not happy at the minute. I got a phonecall yesterday telling me they were cancelling my appointment because the aneasthetist wanted to assess me aswell, and wanted to speak to Dr R and the ortho dudes about my suitability for general anesthetic. As far as I was aware, all three of those doctors were going to be at my appointment which was why it was so important I went. But apparently it wasn’t arranged that way. I was so angry when they moved it. I thought it was going to be the start of the ball rolling to getting my hip sorted. But ho hum. They are doing it for a good reason, and they’re only looking at it for my own safety, as much as it annoys me.

Being positive when you’re having a tough time isn’t easy. But you’ve got to look at others who are having a worse time than you but still manage to get through it and come out the other side smiling. You’ve got to keep doing that in order to maintain some kind of sane mind. The tallest trees in the forest withstand the strongest winds. And I might not be the tallest tree, but I’m certainly not the smallest. 

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First week of a new attitude. Pro’s and Cons.

Well the past week has been pretty good. I’ve had one of my best friends, Kira, over to stay. Originally she was only meant to stay from Monday to Thursday, but only ended up going home last night. It was fantastic to see her. Kira has the same problem in her hip as I do, so she was able to understand the kind of problems I was having, and showed me ways to get around them.  It was good having someone in the flat aswell. I’ve not had anyone about for a long time while cookie’s been in hospital, and I don’t think I realised just how good it is to have someone else around. Even if it’s just to answer you when you talk to yourself, to laugh at you when you do stupid things or to play the DS with you.

So Kira arrived on Monday night. Originally it was going to be about 2130, but they got held up and it was about 2330 by the time they got here. Kira doesn’t exactly travel lightly. Doesn’t really help that she needed to bring her pillows with her, and then all her meds etc. But that Monday was good, I’d managed to tidy and sweep the kitchen floor. I hurt like hell afterwards, but it was a major accomplishment for me. For the past few months, since my hips went to complete shite, I’ve been unable to do things like that. But managing to both clean the kitchen properly, and then sweep the floor, made me feel like I’d managed something on my own. It sounds so stupid that such a small thing could make me feel so good, but it was a good thing for me 🙂

Tuesday was a hard day. I don’t know if I can successfully think of something positive to come out of Tuesday. It was one of my best friends funerals on Tuesday.  I spoke about her in A Proper Diagnosis, but her funeral on Tuesday was a huge test of my emotions. It was the last time I was going to ever be in the same room as her.  Watching her coffin going past me just made me feel as if a huge hole had just formed in my heart. I wasn’t ready to say goodbye to her. She was too young, and was far too nice of a person to suffer the way she did. I miss her hugely already. When cookie gets out of hospital, Kira wants to go to Blackpool and see the illuminations. So hopefully we’ll be able to do that, visit Kat’s grave and say Bye properly to her in our own ways. She was, and still is an inspiration to me. She battled the people who put her down and fought tooth and nail for a proper diagnosis and no matter how ill she was, she always provided a listening ear for me when times were rough. I will always remember her for the person she was before she took severely ill. But her funeral was a celebration of her life. They chose some fantastic songs such as Amazing Grace to open, and the priest gave a beautiful homily about Kat’s life and what she had achieved.  R.I.P My sweet, and breathe easy now. x

Wednesday was spent chilling in bed. I think… I’m having a serious mind blank now as to what’s happened over the past week. I should probably write these things down.  But I think I spent Wednesday in bed watching DVD’s with Kira. She needed a day of rest after Tuesday and I was feeling a bit down. But I learnt something on Wednesday. That asking for help is not a sign of weakness, it’s a sign of strength that you’re not afraid to show you’re not invincible. Especially when it comes to asking for help with things like getting my socks on when I can’t reach my feet cause of my hip. Until recently I thought that asking for help was putting pressure on my friends, pressure that they don’t need.  But then I realised if they were really my friends then they’d not have a problem with helping me out. I said I wanted to change my attitude about things, and I really did mean it. Both online and in real life. And I can do it.

On Thursday I had a blood test to go to at the GP’s surgery. It was my annual diabetic bloods plus some that the hospital had requested. after my admission, just to make sure that a lot of the levels had returned to normal. Karen, one of the practice nurses, is absolutely amazing. She used to be an A&E nurse, and a phleb before that. So she’s well used to getting blood out of difficult veins. But as well as that she is a fantastic listener. She knows a lot of what’s going on at home, and understands why a lot of the time I struggle to keep my moral up. Not only that, but she generally ends up being the person who has to deal with me when I’m splatting in the GPs surgery haha. I think I’ve scared her a few times. But I trust her a hell of a lot to not call an ambulance unless it’s really warranted and wouldn’t do it against my will.  But that all went OK and I then went to the chemist and sorted my script out, got some gas and electric and then tootled home. Then Cookie came round with a support worker for a bit. The SW was a bit of a pain in the arse. A) She sat on my bed when there was a chair sitting right beside it, and I don’t like complete strangers sitting on my bed. B) She followed Cookie around constantly, despite the fact there was always either myself or Kira with her so it wasn’t as if she was going to do anything stupid with us watching. and C) She kept treating me and Kira like complete invalids! I hate that! With a bloody passion!  But we sat and played Monopoly card game for a bit which was good.  Was sad having to say bye to her that afternoon, but that’s the way of things at the minute. But the positive was that she managed to get out, and we did have a laugh playing monopoly.

Friday was a tad manic. Cookie and her mum had to come round to try to find some clothes cookie needed for the show. They didn’t manage to find them in the end, but they hung around for a cup of tea and a biscuit. I managed to try to show Julie that I wasn’t against the plans that were being put in place by the pyschs. I think she was of the opinion that I had sort of been telling Cookie to rebel and not follow the treatment plan, but I want her home. And the easiest and quickest way for that to happen is if she follows the plan and talks to the pyschs. Although her mum carried the conversation on for far too long afterwards, and I could see Cookie getting visibly upset. I think at that point I sort of said that she needed to get back to the ward. Whether or not her mum carried that chat on in the car, I’m not sure, but who knows. Then that evening we went up again, and played a game of monopoly then had a Chinese  Of course I finished mine, but Cookie barely ate any of hers, but Kira managed most of hers which is good. Her tummy had been playing up something silly lately so for her to be able to finish an entire meal was wicked. But when I got home I decided I was going to attempt a shower. Bearing in mind I’ve not been able to have a proper shower in months because I’ve not been able to get in to the bath. (Our shower is above the bath) But Kira had shown me a fantastic way to do it involving a scarf or belt going around the sole of your foot, and sort of slinging it over the side. It was absolutely amazing to have a proper shower, And I honestly think it’s the best shower I’ve ever had. Seriously. So that was the positive of Friday. Having a shower and showing myself I can do it, it’s just finding ways around my hip, which Kira had shown me. Brilliant.

Saturday was fantastic, if not very tiring. Kira’s friend was in Manchester for the day, so we met up with her and went to the Trafford Center. If you’ve never been in the Trafford Center, it’s ridiculously huge. I think we spent about 4 hours there but only went into about 5 shops in the end. But there’s a Legoland there as well, all be it outside and a bit of a hike. We didn’t have time to go to the proper Legoland, but went to the shop. Kira got me an awesome notebook that you can write your name on in Lego, I got some stickers, a pen and pencil set, an orange block key ring with my name engraved in it and got Cookie a personalized minifigure. She’d been able to join us for an hour because her mum was going to Costco and she really didn’t want to wander round there with the family. So Amy (Kira’s friend), Kira, Me and Cookie wandered round the Lego shop then back to the main center. We went into HMV, but it was getting quite late in the day and Kira had wanted to go to Next and get jeans, but I didn’t wanna have to drag cookie to the opposite end of the center for her to have to walk to the other end again when she was getting picked up, so we hung around HMV until her mum was picking her up, then she headed off to her mum and I headed in the general direction of Next, calling in at Claire’s Accessories and the model shop on my way. I don’t have any of my modelling tools or paints here at the minute, they’re all in Loughborough at Bobby’s (I really should go down and get them actually) so didn’t buy any models, but I bought a new purse in Claire’s because mine is falling apart and I’ve had it since I was 12. It’s quite a cool pink one with a monkey on the front. So I met up with Kira and Amy and we headed back towards the shopmobility place. I’d hired out a mobility scooter because I wouldn’t have been able to walk around the TC on my crutches with the way my hip is being at the minute. It wasn’t so embarrassing because both Kira and Amy were in wheelchairs so I didn’t feel like the odd one out. When I got home I took some pictures of Amy and Kira. Since Kat died and I realised I didn’t actually have any pics of me and her together, I’ve been all for people taking pics of them and friends.  Amy had to go and collect her dad from a St John duty then, and me and Kira jumped into bed. We were absolutely knackered, but it was really worth it to be able to spend some time doing normal things. There was loads of positives for that day, but I think just getting out and doing normal stuff with friends, and being able to not feel embarrassed by using a mobility scooter, just made things so much easier. It really gave me a moral boost.

Sunday was a lazy day. Kira wasn’t feeling very well, so we spent the day in bed sleeping and watching DVD’s. Can’t say I did an awful lot that day to say I did something positive. But I think overall the week was pretty positive. Just having someone to stay was great. It gave me a morale boost at just the right time. So thank you Kira 🙂

Will try to keep this up! Don’t know how well it will last, but I can try! x

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Change of Attitudes.

When I started this blog, and even until very lately, the purpose of this blog has been to moan and groan about my health. But I’ve been thinking a lot lately, (Dangerous, I know) and I reckon it’s about time this blog changed direction. No matter how much I moan about stuff, it’s not going to change the outcome of situations. Only I can manage that, and it won’t happen if I sit here and moan constantly. I know that my hips fucked. I know it’s causing me a lot of pain and making things difficult for me, but I don’t want my health problems to define me. I know that from now on I’m going to be the girl on crutches, and that’s going to be the way for quite a while. But from now on I’m going to try and make this blog a bit more positive. Aiming more towards the things that are going right in my life. Because everyone has problems, and a lot of people have problems worse than mine and just carry on without moaning. 

So my new challenge is that every day I’m going to do something positive for myself. Not for others to benefit from, but for me to benefit. And then hopefully, at the end of every week I’ll be able to post and say I did this, this and this. It might not always work, and I know I’m going to continue to have shite days and will probably moan on here about them when I just want to rant and don’t wanna throw my problems at someone else I care about. But fingers crossed, this blog will be a bit more positive from now on.