Then all of a sudden 3 come along.
Ah well, the nature of blogging I suppose! Sometimes we have something to say, and other times there just isn't anything.
Today I could well moan a bit, so apologies in advance to anyone who might read this.
Yesterday, after my teaching, I got the ferry over to Arran, as I have gotten used to doing, except it was a beautifully smooth sailing and I even had a little snooze :) When I got there, we headed back to the flat to wait for the bonfire and fireworks display to start, which was great. They were selling soup and bread, hot dogs, cakes, all kinds of tasty treats and it was just so nice to get something warm cause it was pretty cold. Following this, we were going to a "Vegas" party in the pub next to the flat for a 30th birthday. It was going really well, until Ken started acting a total dafty and was so hilarious that I totally laughed my butt off, then coughed til I was blue in the face and threw up right there on my hand/arm and the table. If only it was possible for the ground to open up.
This totally put a damper on my mood after that, the whole night I felt so embarrassed, as the girl sitting next to me got up and walked away, probably thinking I was a right drunken state even though I'd only had 2 glasses of wine at that point. All I wanted was a little bit of comfort, but Marianne (James' flat mate) wouldn't even look at me as I desperately tried to clean myself off without making even more mess, and James just kinda looked at me as if to say "well, what do you expect me to do?".
I can totally deal with things like that happening at home, where nobody can see me and it's just another thing that happens from time to time, but for it to be so public was just bloody embarrassing (and I've had horrible heartburn ever since too!)
Anyway, I got really pissed off at about 2am cause by that point I was desperate for bed, but nobody would let me leave as it was a "lock in". Not for me it wasn't, I was quite rude about it actually but I just wanted to curl up in bed and sleep. I managed to get up to the flat where James left me on my own and went back to the pub (fine by me, cause I was just going to sleep anyway) and apparently they never got in til after 4am.
So I came home today, had a right good cry on the drive from Ardrossan ferry terminal to my house then had to go and suffer another pantomime rehearsal. It's going really well but I'm fed up of the songs now!
I know there will be lots of people out there who know how it feels to be embarrassed by your own body. I just needed a bit of a rant.
Hope everyone is well x
Sunday, 6 November 2011
Friday, 4 November 2011
Why does it have to be so difficult to claim benefits?
The last month or so have been a nightmare. To start with I decided I didn't want to be signed off work completely (because what am I supposed to do of a day when there's nobody around) so that meant I wouldn't qualify for ESA, and I don't want it anyway, but that means claiming job seekers allowance and going in to the job centre every 2 weeks to "sign on". Joy. Anyway, finally that has been sorted and I'm starting to get a little money through from that (I don't qualify for the full amount because I do some work, but only about 8-10 hours a week). The worst part of it all is that I have been told I need to reapply for another benefit which will hopefully pull in a bit more money. I've been led on the last month that it was all being organised, when actually the council don't have any application on record. I have bills coming out my ears, including tax and national insurance bills of around £600 and hardly a penny to my name.
I'm completely stressed out about this and even cried this morning after coming off the phone from the council. I've always tried my best to keep on top of bills and, even though I do owe money on store/credit cards, I've always tried to at least pay the minimum each month. Problem is that I have to prioritize my rent and council tax, which leaves other things behind. I feel guilty when I have to buy food or petrol cause I know there are bills to pay. Nobody seems to want to help.
Euch, anyway, just need somewhere to moan seen as everyone is at work.
I feel so alone in trying to deal with all this. James has fun with his friends in Arran and I've not seen any of my friends for weeks and weeks. It's not his fault, my few friends around this area all work and my best friend is in Georgia, after spending a year in South Korea.
It makes me feel like I'm not moving forward at all. I have a few more piano students but it's like, an hour here an hour there, and just getting frustrated with everything.
The last month or so have been a nightmare. To start with I decided I didn't want to be signed off work completely (because what am I supposed to do of a day when there's nobody around) so that meant I wouldn't qualify for ESA, and I don't want it anyway, but that means claiming job seekers allowance and going in to the job centre every 2 weeks to "sign on". Joy. Anyway, finally that has been sorted and I'm starting to get a little money through from that (I don't qualify for the full amount because I do some work, but only about 8-10 hours a week). The worst part of it all is that I have been told I need to reapply for another benefit which will hopefully pull in a bit more money. I've been led on the last month that it was all being organised, when actually the council don't have any application on record. I have bills coming out my ears, including tax and national insurance bills of around £600 and hardly a penny to my name.
I'm completely stressed out about this and even cried this morning after coming off the phone from the council. I've always tried my best to keep on top of bills and, even though I do owe money on store/credit cards, I've always tried to at least pay the minimum each month. Problem is that I have to prioritize my rent and council tax, which leaves other things behind. I feel guilty when I have to buy food or petrol cause I know there are bills to pay. Nobody seems to want to help.
Euch, anyway, just need somewhere to moan seen as everyone is at work.
I feel so alone in trying to deal with all this. James has fun with his friends in Arran and I've not seen any of my friends for weeks and weeks. It's not his fault, my few friends around this area all work and my best friend is in Georgia, after spending a year in South Korea.
It makes me feel like I'm not moving forward at all. I have a few more piano students but it's like, an hour here an hour there, and just getting frustrated with everything.
Wednesday, 2 November 2011
I'm still here...
There's just nothing to say.
I'm still feeling bummed that I'm on my own so much, and now that I've put some chilled out music on to try and help me off to sleep, I feel more bummed than I have in a while. James and I had 2 weeks together while his school was on holiday, which was great, but after a couple of nights on my own I woke up at 2am freaking out, trying to figure out where he was. It was one of those movie moments, where you wake up and sit bolt upright, and I was feeling about in the dark to see if he was next to me, where he was supposed to be (in my sleepy state of mind). Not fun :(
Other than that, I've just been teaching and going to panto rehearsals really. The panto performances start 3 weeks tomorrow, and there's still lots to do, as per!
I've not been to the hospital since my IVs, so I don't really know what's going on, but I'm not feeling horrible or coughing as much so that's gotta be a good sign. Only thing is my damn tummy, which at this particular moment in time is sore and bloated, but this seems to be a nightly thing. I'm reluctant to do too much about it because I hate the stuff they give me, so I only hope it's just a minor issue and nothing major.
I'm trying this week to see how I get on without taking arcoxia...it's been mixed really. I'm not doing it for any reason other than I don't like being on it all the time, and want to check I actually needit. I'm not in constant pain but when the pain comes on boy does it hurt. I have ENT and rheumatology clinics in the next 3/4 weeks so hopefully I'll either be discharged or get something new to try.
Anyway, I hope everyone is doing well, especially now we're in November and the cold weather is bound to come soon!
I'm still feeling bummed that I'm on my own so much, and now that I've put some chilled out music on to try and help me off to sleep, I feel more bummed than I have in a while. James and I had 2 weeks together while his school was on holiday, which was great, but after a couple of nights on my own I woke up at 2am freaking out, trying to figure out where he was. It was one of those movie moments, where you wake up and sit bolt upright, and I was feeling about in the dark to see if he was next to me, where he was supposed to be (in my sleepy state of mind). Not fun :(
Other than that, I've just been teaching and going to panto rehearsals really. The panto performances start 3 weeks tomorrow, and there's still lots to do, as per!
I've not been to the hospital since my IVs, so I don't really know what's going on, but I'm not feeling horrible or coughing as much so that's gotta be a good sign. Only thing is my damn tummy, which at this particular moment in time is sore and bloated, but this seems to be a nightly thing. I'm reluctant to do too much about it because I hate the stuff they give me, so I only hope it's just a minor issue and nothing major.
I'm trying this week to see how I get on without taking arcoxia...it's been mixed really. I'm not doing it for any reason other than I don't like being on it all the time, and want to check I actually needit. I'm not in constant pain but when the pain comes on boy does it hurt. I have ENT and rheumatology clinics in the next 3/4 weeks so hopefully I'll either be discharged or get something new to try.
Anyway, I hope everyone is doing well, especially now we're in November and the cold weather is bound to come soon!
Monday, 19 September 2011
getting to that time
As the title suggests, it's getting to that time of year where everyone starts getting sick and we have to be more careful than normal. My brother has a stinking chest infection which I really hope to avoid and lots of friends have varying degrees of cold/flu. Joy! I'm not 1 to completely avoid people, I just try not to get too close if I can avoid it.
IVs went pretty well, happy to say my line lasted the course, although it tried pretty damn hard to stop working. I was just willing it on every time it was time for another dose. LF was up in the end to where it was when the IVs were first suggested so just hoping it's still there or higher when I'm next at clinic.
Sinuses have taken a hissy fit, bleeding and causing lots of pain and I'm trying to reduce my movicol too but tum is hurting and think I might have a touch of gastritis again too. Ouchie! I normally take 1 movicol 3 days a week, but had increased it to every day before the IVs then up to 4 a day half way through. Trying to reduce it is difficult, but I'm down to 2 a day now and hopefully I'll get down to 1 in the next couple of days too :)
As for everything else...well, nothing is really happening if I'm honest...pretty bored, in need of more piano students and trying to find things to keep me occupied while I'm living myself.
Gutted to find out that my friend Alan isn't going to be listed for new lungs, after nearly a year of trying to get on the list and being told on numerous occasions that he was being listed :( keep going Alan! I hope everyone else is keeping well? x
IVs went pretty well, happy to say my line lasted the course, although it tried pretty damn hard to stop working. I was just willing it on every time it was time for another dose. LF was up in the end to where it was when the IVs were first suggested so just hoping it's still there or higher when I'm next at clinic.
Sinuses have taken a hissy fit, bleeding and causing lots of pain and I'm trying to reduce my movicol too but tum is hurting and think I might have a touch of gastritis again too. Ouchie! I normally take 1 movicol 3 days a week, but had increased it to every day before the IVs then up to 4 a day half way through. Trying to reduce it is difficult, but I'm down to 2 a day now and hopefully I'll get down to 1 in the next couple of days too :)
As for everything else...well, nothing is really happening if I'm honest...pretty bored, in need of more piano students and trying to find things to keep me occupied while I'm living myself.
Gutted to find out that my friend Alan isn't going to be listed for new lungs, after nearly a year of trying to get on the list and being told on numerous occasions that he was being listed :( keep going Alan! I hope everyone else is keeping well? x
Thursday, 25 August 2011
Went to clinic this morning hoping for an up, but when I started hacking like a mad witch last night and into this morning I thought it might not happen, which it didn't! Joy. I've had a 20% drop in lung function in the last couple of months so I'm heading back up on Wednesday to get started on IVs. Fortunately I've seen the same Dr the last few times I've been up so I knew it was probably on the cards. They said my cough swab from 2 weeks ago didn't grow anything though so who knows. CF, you are a pain, but at least I don't have to stay in this time.
Anyway, that's next week lol.
This weekend James is coming home! Yay! We are going to a charity night for CF Trust which has been organised by a CF mum in my home town. I'm going to meet her tomorrow while he's at nursery, incase we don't get a chance to chat on Saturday night so that should be nice.
So many people on my mind, I hope you're all keeping as well as can be :) x
Anyway, that's next week lol.
This weekend James is coming home! Yay! We are going to a charity night for CF Trust which has been organised by a CF mum in my home town. I'm going to meet her tomorrow while he's at nursery, incase we don't get a chance to chat on Saturday night so that should be nice.
So many people on my mind, I hope you're all keeping as well as can be :) x
Thursday, 4 August 2011
Well the treatments seem to have made a difference :) I'm not sure yet if I'm back to my normal, but zumba was 10 times easier last night than it was a few weeks ago. Thank goodness for that, I'm sure you all know how unpleasant it is to hack up a lung with everyone watching lol.
Unfortunately, starting the steroids etc a few weeks ago meant I couldn't go to my clinical trial appointment in Edinburgh so it has been rescheduled for Monday coming, then I have an OGTT on Wednesday. My ENT appointment was pants. For starters, I didn't like the Drs patronizing attitude, just everything about him creaped me out :/ He was a total pain. Secondly, I obviously thought I was going to be seen about my sinuses, but they started off by giving me a hearing test which I thought was a bit odd, but turns out they were more concerned with the dizziness I'd been having and were worried it could be drug interactions or something. Anyway, he decided I have/had Benign Paroxysmal Positional Vertigo as a result of a head injury I got at work in February. It seems to have mostly cleared up now though, yay!
No polyps...which is good, but bad as well cause now they won't operate. So I'm trying flixonase nasules for 6 weeks then back to ENT in 3 months.
CF crap aside, I bought my wedding dress last week!!! Super excited. I'm keeping it a secret until the big day, but I'll definitely post pictures after it's by :)
James is moving to Arran on Saturday :( Feeling pretty rubbish about it, I'm not looking forward to living myself after we've been living together for 2 years. Euch. I think James' sister will be staying with me for 8 weeks or so towards the end of the year as she got the lead role in the pantomime in the next town. It runs for 6 weeks with 2 weeks rehearsals beforehand and she lives in London, so it makes sense :)
Hope you're all good x
Unfortunately, starting the steroids etc a few weeks ago meant I couldn't go to my clinical trial appointment in Edinburgh so it has been rescheduled for Monday coming, then I have an OGTT on Wednesday. My ENT appointment was pants. For starters, I didn't like the Drs patronizing attitude, just everything about him creaped me out :/ He was a total pain. Secondly, I obviously thought I was going to be seen about my sinuses, but they started off by giving me a hearing test which I thought was a bit odd, but turns out they were more concerned with the dizziness I'd been having and were worried it could be drug interactions or something. Anyway, he decided I have/had Benign Paroxysmal Positional Vertigo as a result of a head injury I got at work in February. It seems to have mostly cleared up now though, yay!
No polyps...which is good, but bad as well cause now they won't operate. So I'm trying flixonase nasules for 6 weeks then back to ENT in 3 months.
CF crap aside, I bought my wedding dress last week!!! Super excited. I'm keeping it a secret until the big day, but I'll definitely post pictures after it's by :)
James is moving to Arran on Saturday :( Feeling pretty rubbish about it, I'm not looking forward to living myself after we've been living together for 2 years. Euch. I think James' sister will be staying with me for 8 weeks or so towards the end of the year as she got the lead role in the pantomime in the next town. It runs for 6 weeks with 2 weeks rehearsals beforehand and she lives in London, so it makes sense :)
Hope you're all good x
Sunday, 10 July 2011
moving forward
This week James and I have been looking at wedding venues, trying to choose a colour scheme (as I'm fairly set on a colour, regardless of where we wed, but he doesn't want to wear it...boooo) and also trying to decide if we can possibly afford to get married in summer 2012 instead of 2013, as his cousin is getting married the same weekend we had in mind (mid July 2013). She's a teacher as well which makes it difficult...it's the only proper holiday of the year really. It's amazing how much work they still have to do at Christmas and Easter. Nightmare!
Anyway, yesterday we spent most of the day over on Arran looking at property for James and Marianne to rent. They settled on a flat on the waterfront in Lamlash, 5/10 minutes walk to the school, and easy to get to off the ferry. I'll no doubt be there quite a bit!
I had clinic on Thursday. I met one of the CF nurses while waiting for my rheumatology appointment the week before and she thought I should be seen because my sinuses have been so bad (still waiting for an ENT appointment). Anyway, turned out lung function was lowest since I transitioned to adult care, and although it's still high, they were concerned as I'm normally pretty stable lung numbers wise. As far as I can make out, the plan is prednisolone until Wednesday, plus 2 weeks doxy, then if no better after that it'll probably be IVs, although they don't really know what's causing it. There's a mutual refusal among the team it seems to consider that my symptoms got worse and it's been a gradual down-hill slope since the aspergillus turned up, but I think it's possibly so they don't worry me. I'm not worried, I'm just annoyed at antibiotics for 2 weeks, then a week or 2 off, then back on. Feels like it's been going on for ages.
I feel like a right pain though complaining when I'm seeing friends fighting for their lives...really changes things. I'm not upset or worried about my situation at all, I just hope it doesn't come across that I am.
Hope everyone is keeping well as can be <3
Anyway, yesterday we spent most of the day over on Arran looking at property for James and Marianne to rent. They settled on a flat on the waterfront in Lamlash, 5/10 minutes walk to the school, and easy to get to off the ferry. I'll no doubt be there quite a bit!
I had clinic on Thursday. I met one of the CF nurses while waiting for my rheumatology appointment the week before and she thought I should be seen because my sinuses have been so bad (still waiting for an ENT appointment). Anyway, turned out lung function was lowest since I transitioned to adult care, and although it's still high, they were concerned as I'm normally pretty stable lung numbers wise. As far as I can make out, the plan is prednisolone until Wednesday, plus 2 weeks doxy, then if no better after that it'll probably be IVs, although they don't really know what's causing it. There's a mutual refusal among the team it seems to consider that my symptoms got worse and it's been a gradual down-hill slope since the aspergillus turned up, but I think it's possibly so they don't worry me. I'm not worried, I'm just annoyed at antibiotics for 2 weeks, then a week or 2 off, then back on. Feels like it's been going on for ages.
I feel like a right pain though complaining when I'm seeing friends fighting for their lives...really changes things. I'm not upset or worried about my situation at all, I just hope it doesn't come across that I am.
Hope everyone is keeping well as can be <3
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