annual review

Thought I'd write this post while I remember (almost) everything that was talked about!

Ok, so lung function went really well. Although my numbers have dropped, my predicted numbers have also dropped so I've basically stayed the same. I didn't manage to get a sample (goodness only knows why, chest isn't exactly clear, just stubborn) so had a cough swab instead. Physio went pretty well too, didn't manage to walk as far as last year but there's not a huge change. I got a weird headache half way through which shot my heart rate up and put my sats down a tad, but it resolved and everything went back to normal. I definitely felt more breathless than last year as well. Dietician said the usual really - need to stop losing weight, try and get tummy back under control and do a food diary.

Dr is referring me to ENT again as they said I didn't attend my last appointment, but I didn't get one through :( She's also referring me to rheumatology to see if I need anything stronger for my joints. They're not always bad but they've flaired up just now so she started me on naproxen twice a day as well. I'm getting much better at giving blood! So proud lol. Managed first time and I didn't have a freak out :)

I'm told I need to get better at doing physio. I'm doing enough exercise apparently but just not enough physio. I get a complete mental block with physio, hate it, can't seem to always make myself do it, even when I know I need it. Think I need to do some psychological work with myself lol.

Nothing else really to talk about, life is just rolling on as normal...dunno if that's good or not lol.

Anyway, I'm tired now and have a piano lesson to do for a new student, so I'm gonna shoot!

not a lot to say...

...but I've abandoned you long enough, journal!

It's official, James and I are moving again. Nightmare, but hopefully it'll be worth it. We have managed to land ourselves a cottage with garage and quite a large garden, 2 double bedrooms, large bathroom and an even larger kitchen. Excited! It's not as modern inside as our flat is but what we lose in terms of furnishings, we gain with all the extras :)

Apart from that, nothing much is happening to be honest. I'm tired and emotional, mainly grumpy, have been for a few weeks now. My tummy is causing me so much stress that I have considered stopping eating completely. My chest hurts when I cough and all my muscles hurt too. Sinus blood this morning, marvellous. Annual review on the 17th...would really like to last til then but I'm getting so fed up of still not feeling right. Still so dizzy I could fall over - thankfully, when it's worst I'm lying down so I've avoided lots of bruises!


Body, you are doing my head in!

All that aside, I'm still working, still trying to get more piano students. The weather has been fantastic, I've been enjoying it so much. Hope everyone is feeling good xx

stuff

I can't even really think where to start if I'm honest.

What a weekend! James' cousin Vicki got married on Saturday to Andy. They are a fantastic couple and it was a really beautiful day, the sun was shining and everyone looked so glamourous! I played piano at the reception and James' sister Ashley sang at the service. She's a great singer :) She studied musical theatre in Guildford and is now living in London and auditioning like mad for shows.

Everyone was asking me if I was getting lots of ideas for our wedding, and if I'm honest, I wasn't really. As lovely as their wedding was, and as perfect as it was for them, it wasn't the kind of wedding James and I want for ourselves. We are hoping to be married outside in a non-religious service (as James is the least religious person I've possibly ever met) and to have a reception a little different from the usual. We shall see!

Sunday was a stunning day again, so James and I took Fudge (my family's dog) a long walk around the woods, after which I was beat! We made some burger rolls and I had a couple of pints of cider and just enjoyed being warm in only a tshirt and skirt. Shame the rain has come back now though :(

Body-wise...I couldn't be more annoyed with my digestion and my sinuses if I tried. I am seriously considering cutting out most fats and seeing if my tummy will settle before building it back up. I'm sick of waking in the night feeling sick from the pain or waking from the noise of it rumbling! I was also wakened the other night by the grating sound coming from my left lung. Good cough and it went away but because I couldn't be bothered getting up to shift it properly it just came back.

I've started using my sinus rinses. So far so good I think. I got really bad earache and headache after using it for the first while, and the pressure at the front and back of my head is really bad still while I'm using it but seems to be reducing thankfully. I'm starting to think that a lot of my troubles might be related to polyps again (growths of tissue which can cause blockage of the airway) rather than excessive mucus, although occassionally I'm still draining some really awful looking stuff down the back...ew. I thought my balance was recovering over the weekend but it's getting worse again - I thought my week of extra antibiotics was helping but now I'm off them again I can feel it getting worse already. Only finished them on Thursday but nevermind! I'm not due at clinic til the 17th May for my annual review so I'm trying to avoid going up there until then.

I also don't suppose that so many people being ill around me with various flu/cold type things is helping much. I'm definitely avoiding the worst of it all still, but I do tend to get ill when everyone else is fine for some reason. As soon as I think I can relax a bit I always get something lol.

I'm sure there are many more things I was gonna update about but I forget now. Hope everyone is well :)

fungus likes me

Apparently there is no physical reason for me feeling a bit poop...no physical reason to explain why I'm so dizzy I fall into things and have to hold myself up. My chest has been angry with me the last week or so too, wheezy, really junky and coughing til I'm sick. My sinuses are killing me all the time, and the "vacuum" headaches that come when I don't get a drink in time (about every half hour/hour) are just unreal. Aspergillus is back too, so think that explains the amount of junk...they're still not treating it.

I had clinic this morning. Lung function was down a bit, but nothing major, sats were 100% but my heart rate was over 110bpm and I was all over the place trying to put my shoes back on after being weighed lol. Weight has stayed the same (woop!) so that's not a worry but had a good long chat with the dietician (she's really lovely) about ways I can try and keep my sugars up, especially while I'm at work. Hypoing between breakfast and lunch, then again after lunch, pretty much every time I'm there is starting to do my head in. She thinks it's possible that my sugars might be climbing then crashing, but they could just be dropping with all the energy needed to stay awake and actually work lol.

Had a chat with the Dr about my work situation too...she literally said "get your work to hang, and I really mean it". I know I want to leave and work on my piano teaching only but I'm not really able to support myself financially with that at the moment...euch. The nurse spoke to me after though and offered to have a meeting at my work to discuss different ways they can keep me there...not sure what I want to do about it though. I don't really feel like facing up to the fact I'm still in a bit of a dip, even if my numbers don't really back it up all the time. I'm glad my numbers are still good but it's been a while now since I've felt really good.

Oh, Dr didn't check my tummy either...it was just a bit of a disaster clinic and think they were just wanting rid of us as quick as possible. Stupid phoning me to go up if they're not actually wanting to go over everything.

Pft.

Lots of people needing positive vibes just now and really hope you all start to feel better!! xx

ridiculous...?

I find it strange that even though I was at a friends' house for dinner tonight, I feel very lonely. It feels ridiculous to me that I feel like I don't really have anybody when I know I do. I have James for a start, and lots of friends who I know love me, as well as my family...so how is it possible to still feel like you're so alone at times. No matter how many times I try to convince myself otherwise, I just feel alone sometimes...we all must have times like that though, right?

I know I'm physically alone tonight (James is out all night) and that can make me feel worse, but it's not only that.

My work, for example, is a nightmare for it. Everybody is so two-faced it's hard to know who you can trust. And even the people I feel at times I can trust tend to let me down...I hate how false people can be. I know we're all guilty of it at times, I guess it's just a need to please and be professional under the circumstances...but is it really necessary?

Don't really know where this is going to be honest. I have a few people at the moment I'm  just not getting...it's a bit weird cause for a while I considered them good friends, but now I just don't know what's going on. I like to think people can talk to me and tell me if I've done something to offend or upset, and know that we'll all be adult about it and move on...just feel a bit let down and I'm struggling a bit to let it go.

Anyway, my "spoil myself" bath turned into me lying in some hot bubbles for a while and messing about with the cat. No scrubs, lotions or potions were touched, even though I had them all sitting ready, just didn't have the energy to bother, especially in the heat, so I tried to get the cat to come into the bath (just so I had something to laugh at) but he was having none of it - although, he did sport a rather fetching bubble hat for a while. Hilarious.

To bed now, hope everyone is well x

abandoned

Woops! Blog has kinda been abandoned, but it's always a good sign! Things have been busy busy busy lately.

We have been delivering invites for our engagement party on the 21st May and I even have my dress already! Super exciting. We also went out in Glasgow with friends on Saturday night to celebrate. Lots of people turned up (way more than I expected!) and we had a really great time. I did feel a bit rough on Sunday but I guess that's to be expected when you drink all night, even if you do go to bed relatively sober.

On Friday, there was an opening/networking night at the shop I teach from. It was fab! Lots more people than expected again, and lots of business gained. The owners organised a raffle for the CF Trust, and as the night went on it turned out there were 3 people with CF in the shop. One guy I already knew about as we went to paeds together, but the other guy is older than me and although I've seen him in the shop a few times for lessons etc, I didn't know he had CF. The raffle alone raised £200 for the Trust, so that's fantastic.

I'm starting 2 new students on Monday, so that's me up to 14 now! Woop! Hopefully they keep coming and I can kick my other job up the butt. Unfortunately, I'm 1 of the 56 people being ear-marked for move up to junior campus, and if I don't go I'll get paid less! Hate financial black mail, it's ridiculous! Why work hard for a qualification just to be put down for it. So there's a lot of bad feeling at work just now, and I'm, quite frankly, completely sick of it! I only do 24 hours a week there, but if I stay I'd need to up my hours, which just wont be happening. I have no time as it is!

I'm off just now, as I've done in my shoulder. I don't know how, but I have a history of injuring myself in my sleep, so I'm putting it down to be being incapable of sleeping like a normal person. My shoulders do get extremely sore during the night, as I tend to lie on my side, so during the night I have been sliding down the bed, off my pillows, and lying on my back, which results in James waking up cause my breathing gets laboured and he pushes me in the side to make me roll over! Unfortunately the other night, I had just wakened cause my chest was rattling, then he pushed me in the side and it was sorer than I expected. He said I sounded like I was struggling. Yeh, cause doing that is really gonna help! lol.

Anyway, bit of a ramble, but that's why I chose the name of my blog lol. Hope everyone is doing ok x

sharing the love...

of piano.

I got some new sheet music through this week and I have to tell you all how much I'm loving having a challenge again. I had looked at the pieces a little in my last year at the RSAMD but I was concentrating on accompaniment and chamber music then so never took them very seriously.

Anyway, they are Schumann's "Papillons" and Schubert's "Fantasy in C Major". The Fantasy is 30 pages long and is very difficult, especially for someone like me who has tiny fingers! Damn composers with big hands. Papillons is not so difficult but is beautiful and really fun to play. I enjoyed listening to a girl on my course playing it in a performance class which is why I started looking at it.

I feel now that I am teaching and getting back into my music life that I should be spending more money on sheet music and more time practicing! What's the point in me getting on at students for not doing enough practice when I maybe play once a week...no, it seems wrong to me.


My poor wee Granny passed away a year ago today. Love to you Gran!