you guessed it. Me!
So I mentioned in my last post that I hadn't been sleeping too great, and this has resulted in me doing some stupid things which have been amusing to everyone around me, but most embarrassing for me.
I'll start with Sunday. My car was making the most awful noise and after taking a few speed bumps, a heat cover from my exhaust fell off. I was pretty raging about this and asked Dad to look at trying to fix it. When he asked me to "give it some revs", I did and nothing happened...and again...and again. Nothing. By this point James and Dad were exasperated, my car was running, how could I not rev. Bit hard to rev when you're pressing the break pedal. Nice one Ruth...they laughed a lot and I felt embarrassed.
Today, I put about 25 quid of shopping through self serve only to discover I had no purse. The lady was kind enough to suspend the transaction so I could drive home, get my purse and go back and pay. What an idiot.
I actually tried to drive away without starting my car the other day. I put the key in, car in gear, took the handbreak off and sat wondering what on earth was wrong.
To say it's not been my cleverest few weeks is an understatement, and with only 3.5 hours sleep last night, today was a bit miserable, so I felt extra specially embarrassed having to admit to no purse in front of a queue of shoppers.
Anyway, just thought I'd post something a bit stupid, cause last few have been awfully health focused.
Here's to a better sleep tonight *fingers crossed*
Tuesday, 21 February 2012
Friday, 17 February 2012
we have a plan
Bit of a ridiculous time of day to be posting a blog, but I've not been sleeping too well and have been up since 5.30am...
I went up to clinic yesterday (and yes, that means I've been there every week for the last few...boring!) to get my treatment plan for this steno that's decided to make my lungs it's home. They told me they don't really know what affect it has on CF lungs and that they don't always treat it, but considering I'd had marginal improvement on IVs but still looked (and felt) a bit like the walking dead, they decided to treat.
That means 3 months of doxycycline and septrin, as well as being put back on colomycin nebs. Fortunately I've had colomycin before so didn't need to get a test dose...although after my first dose I was so tight and wheezy that I thought that might've been a huge mistake, but the 2nd dose wasn't too bad.
Surprise surprise, my weight was down again. Thank god my BMI is still within range at a pretty decent 21.5 or they'd be going mental. I suppose that's the only advantage I can think of to having been a bit overweight 2 years ago.
I've decided to speak to liason psychiatry, not for a diagnosis (as they were keen to point out yesterday) but for coping mechanisms. This is not all related to CF, there are some other issues I think it would be good for me to get off my chest, but I don't like to be a burden and hate talking about things that will have me and/or other people upset. I spoke with a few people about it before making the decision, which helped put my mind at ease about asking, and actually it wasn't as bad as I had imagined it would be.
Which brings me on to facebook. I said goodbye to it again last week, after only starting it up again 2 weeks before. I feel better being rid of it...something about it when I'm not feeling good, and it's just easier to delete it and get back on it when I feel better.
I hope everyone is feeling well x
I went up to clinic yesterday (and yes, that means I've been there every week for the last few...boring!) to get my treatment plan for this steno that's decided to make my lungs it's home. They told me they don't really know what affect it has on CF lungs and that they don't always treat it, but considering I'd had marginal improvement on IVs but still looked (and felt) a bit like the walking dead, they decided to treat.
That means 3 months of doxycycline and septrin, as well as being put back on colomycin nebs. Fortunately I've had colomycin before so didn't need to get a test dose...although after my first dose I was so tight and wheezy that I thought that might've been a huge mistake, but the 2nd dose wasn't too bad.
Surprise surprise, my weight was down again. Thank god my BMI is still within range at a pretty decent 21.5 or they'd be going mental. I suppose that's the only advantage I can think of to having been a bit overweight 2 years ago.
I've decided to speak to liason psychiatry, not for a diagnosis (as they were keen to point out yesterday) but for coping mechanisms. This is not all related to CF, there are some other issues I think it would be good for me to get off my chest, but I don't like to be a burden and hate talking about things that will have me and/or other people upset. I spoke with a few people about it before making the decision, which helped put my mind at ease about asking, and actually it wasn't as bad as I had imagined it would be.
Which brings me on to facebook. I said goodbye to it again last week, after only starting it up again 2 weeks before. I feel better being rid of it...something about it when I'm not feeling good, and it's just easier to delete it and get back on it when I feel better.
I hope everyone is feeling well x
Wednesday, 8 February 2012
the culprit!
I went up to Gartnavel today for a repeat chest x-ray and to get my line out.
I was moaned at for losing half a kilo. My lung function was fine and chest sounded OK. Apparently the x-ray wasn't exactly perfect, but showed a small improvement. Seen as I started feeling a fair bit better over the last couple of days we decided just to stop IVs and see me back up in 4 weeks. If I need to be seen before then I'll be less than happy.
I saw my microbiology report from my samples when I was in. They grew aspergillus as expected, but also a new 1 for me - stenotrophomonas maltophilia.
Bit of a mouthful! Glad to finally know what was going on though.
I think I must've grown everything in my time apart from B. cepacia!
Anyway, bugger off steno, I would like to avoid a repeat performance.
I was moaned at for losing half a kilo. My lung function was fine and chest sounded OK. Apparently the x-ray wasn't exactly perfect, but showed a small improvement. Seen as I started feeling a fair bit better over the last couple of days we decided just to stop IVs and see me back up in 4 weeks. If I need to be seen before then I'll be less than happy.
I saw my microbiology report from my samples when I was in. They grew aspergillus as expected, but also a new 1 for me - stenotrophomonas maltophilia.
Bit of a mouthful! Glad to finally know what was going on though.
I think I must've grown everything in my time apart from B. cepacia!
Anyway, bugger off steno, I would like to avoid a repeat performance.
Friday, 3 February 2012
how quickly things change
Well, I'm home! Got home on Tuesday after being admitted to Gartnavel on Wednesday.
I had been in a lot of pain since the Wednesday before, and had made an appointment with my GP for the Tuesday (as I was working on the Friday at the only time they could offer) to check it wasn't an injury as I didn't fancy trailing my butt up to Glasgow if it wasn't CF related. Anyway, GP said I had pleurisy but that he wasn't giving me anything because the pain wasn't as intense. A sign, he thought, that I was getting better. I think deep down I knew I'd have to go to CF clinic because I was spending all day in bed, apart from getting up to teach, then coming home and going back to bed. I had just hoped to avoid seeing them for a bit longer.
Anyway, this didn't sit very well with me so I went up to clinic that afternoon and was x-rayed straight away and told I had a chest infection (which I later found out was a pneumonia) and sent home with 3 oral antibiotics and strict instructions to phone them if I wasn't getting better.
Next day the pain started to migrate so I phoned and they took me in. Boo. I've been on IVs just over a week now, due to finish on Wednesday, so I'm going back up for another X-ray to make sure chest is clearer.
Since getting home on Tuesday I've been using enshakes so that I don't have to force feed myself, as IVs make me feel sicky and very tired so I don't eat as much. However, they sent my blood sugars sky rocketing so I was told to go to clinic yesterday for an OGTT. It was fine, thankfully just my usual, so it must just be the drinks.
I had a bit of an uncomfortable conversation with 1 of the consultants about how I felt I wasn't being fully informed about what's going on with me. I got the impression he felt I was questioning their work practice, which I wasn't, I just wanted to know more but kept forgetting what I needed to ask, as they came into my room mid nebs etc so I wasn't fully concentrating, and they didn't say much other than "how are you feeling now?". Anyway, he explained that I'm on all the treatments I need to be on, that I'm not allergic to the aspergillus but that there had been a change in my blood work that showed I'm fighting it harder. Apparently it shows in my sputum more than they'd like but since I'm not allergic they are happy to leave it. I don't have any allergies at all so that doesn't surprise me, but I wanted to let them know that my chest has definitely changed symptom wise since this appeared. I have made this clear in the past but depending on which consultant I see, I'm not convinced it always goes in.
I also have managed to clear the pseudomonas. This, however, left me wondering what on earth infection I actually have. He didn't have any answers to that, just that my most recent sample was negative for pseudomonas, but said that seen as I had pneumonia they felt they had no choice but to have me on IVs and extra physio.
I saw a CT scan of my chest that was taken in August at the run in study in Edinburgh, which showed bronchiectasis and some scarring, and he said that my weakest area is the bottom left, where this damn pneumonia is.
The long and short of it is that my CF is kicking my butt a bit more than it used to. So I need to keep working at kicking its butt.
I know I'm still very well in CF terms, but a lot of things have changed in the last couple years and it does take a lot more effort to stay well, and I've lost the feeling that I may actually be invincible. Not literally, but I always felt that I was gonna be fine forever. Maybe I will be, maybe I won't, but Dr reckons that I should be fine provided I keep the pseudo away. Fingers crossed.
My boring life aside, I found out yesterday that a very close CF friend has been assessed for transplant and can't be listed due to the amount of scarring in his right lung. Freeman think he will die from blood loss during the operation. To say I was devastated doesn't even cover it, I was shaking all over when he told me over the phone and cried for ages. I'm close with his fiancee too and am really hating the feeling that there's nothing I can do. I hope he gets home to her soon, as he is going back onto the ward today when he gets back. He is very poorly now and we all hoped that transplant would be an option and he would have something to look forward to.
Hope you are all well x
I had been in a lot of pain since the Wednesday before, and had made an appointment with my GP for the Tuesday (as I was working on the Friday at the only time they could offer) to check it wasn't an injury as I didn't fancy trailing my butt up to Glasgow if it wasn't CF related. Anyway, GP said I had pleurisy but that he wasn't giving me anything because the pain wasn't as intense. A sign, he thought, that I was getting better. I think deep down I knew I'd have to go to CF clinic because I was spending all day in bed, apart from getting up to teach, then coming home and going back to bed. I had just hoped to avoid seeing them for a bit longer.
Anyway, this didn't sit very well with me so I went up to clinic that afternoon and was x-rayed straight away and told I had a chest infection (which I later found out was a pneumonia) and sent home with 3 oral antibiotics and strict instructions to phone them if I wasn't getting better.
Next day the pain started to migrate so I phoned and they took me in. Boo. I've been on IVs just over a week now, due to finish on Wednesday, so I'm going back up for another X-ray to make sure chest is clearer.
Since getting home on Tuesday I've been using enshakes so that I don't have to force feed myself, as IVs make me feel sicky and very tired so I don't eat as much. However, they sent my blood sugars sky rocketing so I was told to go to clinic yesterday for an OGTT. It was fine, thankfully just my usual, so it must just be the drinks.
I had a bit of an uncomfortable conversation with 1 of the consultants about how I felt I wasn't being fully informed about what's going on with me. I got the impression he felt I was questioning their work practice, which I wasn't, I just wanted to know more but kept forgetting what I needed to ask, as they came into my room mid nebs etc so I wasn't fully concentrating, and they didn't say much other than "how are you feeling now?". Anyway, he explained that I'm on all the treatments I need to be on, that I'm not allergic to the aspergillus but that there had been a change in my blood work that showed I'm fighting it harder. Apparently it shows in my sputum more than they'd like but since I'm not allergic they are happy to leave it. I don't have any allergies at all so that doesn't surprise me, but I wanted to let them know that my chest has definitely changed symptom wise since this appeared. I have made this clear in the past but depending on which consultant I see, I'm not convinced it always goes in.
I also have managed to clear the pseudomonas. This, however, left me wondering what on earth infection I actually have. He didn't have any answers to that, just that my most recent sample was negative for pseudomonas, but said that seen as I had pneumonia they felt they had no choice but to have me on IVs and extra physio.
I saw a CT scan of my chest that was taken in August at the run in study in Edinburgh, which showed bronchiectasis and some scarring, and he said that my weakest area is the bottom left, where this damn pneumonia is.
The long and short of it is that my CF is kicking my butt a bit more than it used to. So I need to keep working at kicking its butt.
I know I'm still very well in CF terms, but a lot of things have changed in the last couple years and it does take a lot more effort to stay well, and I've lost the feeling that I may actually be invincible. Not literally, but I always felt that I was gonna be fine forever. Maybe I will be, maybe I won't, but Dr reckons that I should be fine provided I keep the pseudo away. Fingers crossed.
My boring life aside, I found out yesterday that a very close CF friend has been assessed for transplant and can't be listed due to the amount of scarring in his right lung. Freeman think he will die from blood loss during the operation. To say I was devastated doesn't even cover it, I was shaking all over when he told me over the phone and cried for ages. I'm close with his fiancee too and am really hating the feeling that there's nothing I can do. I hope he gets home to her soon, as he is going back onto the ward today when he gets back. He is very poorly now and we all hoped that transplant would be an option and he would have something to look forward to.
Hope you are all well x
Monday, 9 January 2012
AH!...
I'm late, again! Happy new year everyone, I hope the first 9 days of January have been good to you so far.
I've not really got much to report tbh. Christmas was good :) We visited my family in the early afternoon to exchange gifts before heading up to James' Dads house to do the same. After that it was off to his mums house for our dinner. We nearly always have dinner there as his brother gets home for Christmas eve night and Christmas day. He has severe Autistic Spectrum Disorder and is a resident at the National Autistic Society residential centre I worked at for 4 years (Daldorch). He was on great form and we had a really nice relaxing time. Only problem with the day was that I was driving everywhere so was ready for my bed by about 8pm.
Boxing day everybody came to us for a buffet. It was really great and I ended up feeling a little drunk by the end of the night (clearly I as compensating for having driven everywhere the day before).
Um....New year's eve was basically the same as always. I got stupidly drunk and don't remember the bells (my memory comes back at about 1.30am), then was put in a taxi shouting about how I didn't want to go home yet...you get the picture. It gave James' mum and his sister a good laugh when we got back to their house though. New year day dinner was with my family. I had offered to make the soup, but was so tired and coughing all over the place from the drink the night before that it felt like a much bigger task than it actually was lol.
James was home for a full 2 weeks, which was great, but I felt really low when he went back over the Arran last night...euch.
Yesterday, the oldest of my 2 younger brothers crashed his car. He skidded and hit a verge then rolled a few times, smashing nearly every window. The CD player dislodged and flew about inside the car, also hitting him on the head. He was 1 very lucky guy being able to walk out of it, as it landed right side up. Anyway, we reckon the car's a write off cause it isn't worth an awful lot, and had obviously spent some time on it's roof! Scary times.
Not a lot to report health wise. My tummy is still being seriously rubbish. I had more kleanprep on the ward on the 23rd Dec, and am heading that way again! It's infuriating. I did, however, blow my best lung function in a good while that day so can't really complain chest wise.
I hope you all had a wonderful Christmas with the people you love :)
PS It turns out that the Liszt Etudes are REALLY hard...not so much the originals but the Grande and Transcendental...omg...no idea why I asked for the scores for my Christmas lol...
I've not really got much to report tbh. Christmas was good :) We visited my family in the early afternoon to exchange gifts before heading up to James' Dads house to do the same. After that it was off to his mums house for our dinner. We nearly always have dinner there as his brother gets home for Christmas eve night and Christmas day. He has severe Autistic Spectrum Disorder and is a resident at the National Autistic Society residential centre I worked at for 4 years (Daldorch). He was on great form and we had a really nice relaxing time. Only problem with the day was that I was driving everywhere so was ready for my bed by about 8pm.
Boxing day everybody came to us for a buffet. It was really great and I ended up feeling a little drunk by the end of the night (clearly I as compensating for having driven everywhere the day before).
Um....New year's eve was basically the same as always. I got stupidly drunk and don't remember the bells (my memory comes back at about 1.30am), then was put in a taxi shouting about how I didn't want to go home yet...you get the picture. It gave James' mum and his sister a good laugh when we got back to their house though. New year day dinner was with my family. I had offered to make the soup, but was so tired and coughing all over the place from the drink the night before that it felt like a much bigger task than it actually was lol.
James was home for a full 2 weeks, which was great, but I felt really low when he went back over the Arran last night...euch.
Yesterday, the oldest of my 2 younger brothers crashed his car. He skidded and hit a verge then rolled a few times, smashing nearly every window. The CD player dislodged and flew about inside the car, also hitting him on the head. He was 1 very lucky guy being able to walk out of it, as it landed right side up. Anyway, we reckon the car's a write off cause it isn't worth an awful lot, and had obviously spent some time on it's roof! Scary times.
Not a lot to report health wise. My tummy is still being seriously rubbish. I had more kleanprep on the ward on the 23rd Dec, and am heading that way again! It's infuriating. I did, however, blow my best lung function in a good while that day so can't really complain chest wise.
I hope you all had a wonderful Christmas with the people you love :)
PS It turns out that the Liszt Etudes are REALLY hard...not so much the originals but the Grande and Transcendental...omg...no idea why I asked for the scores for my Christmas lol...
Thursday, 8 December 2011
short video
The video above is of me playing Greensleeves...but it hardly sounds like Greensleeves, which is why I like it. Consider it a Christmas present (if you like it), or consider it pointless nonsense (if you don't). Apologies for the poor quality, I couldn't be bothered to fix the lighting and I don't have an external mic for my laptop so the sound is ropy in places.
I wouldn't normally want people to hear me play, especially something that's not technically challenging, but hey ho, it's Christmas, and I really need to just get over myself sometimes :)
x
I can't really think what to write 'cause I can't really remember what's been happening!
Panto went really well, especially considering the not so pleasant circumstances surrounding it. Only thing I will say is it wasn't as cold outside this year as last, so while the hall was a slightly more pleasant temperature at the beginning of each performance, by the end it was roasting and gave me a beasting sinus headache every night without fail. They get particularly bad if it's too warm, probably down to slight dehydration.
My financial situation has picked up a bit too, thank goodness! I got a lovely tax rebate which will pay my tax bill, I'm due money from the council which should be enough to pay my national insurance bill, and I finally got housing money sorted out. What a nightmare it's been though, the council can expect a big complaint letter, written by James on my behalf (cause he's better at stuff like that). They have literally messed up at every stage, and have driven me to insanity.
I was really feeling unwell the other week after the kleanprep, probably the crappest I've felt in a wee while. I'm putting it down to not being properly cleared out and also the stress of trying to deal with morons. But anyway, I broke my own rule at zumba that week. Normally, even if I feel really rubbish and can't stop coughing, I still do the full class (well, as much as possible) but take it easy, but this time resulted in me sobbing in the toilet with a green/grey face and dry wretching over the toilet, so I put my jumper on and sat out. I've since had more kleanprep cause I was curled up on my living room floor crying in agony lol. How I love being reduced to behaving like a baby in my own home.
Anyway, I've been feeling a lot better since so I'll cheer up this post a bit now.
James finishes school for 3 weeks in 1.5 weeks, yay! He is coming home tomorrow, then next weekend too, before coming home on Thursday 22nd, just in time for Christmas. My Christmas tree is still standing after 3 days, which is a massive improvement on last year, as after 3 days I'd taken it down thanks to my crazy cat tipping it over about 4 times a day. There are a few presents wrapped and under the tree, although I still have lots to buy.
I've spent today in my pjs cause police advised not to travel (thanks "hurricane bawbag") so I cancelled my lessons and rearranged them for Saturday and Monday. It's been bliss, not doing anything, but only really cause I've wound right down and want my 2 weeks holiday to happen right now.
Sending lots of love to all you poorly bears out there, this time of year sucks :( *hugs!* xxx
PS yesterday I was taken to see We Will Rock You in Edinburgh as part of my christmas from mum and dad :) it was me, mum, dad and my brother James. It was cool :) really liked it and haven't been to the theatre for ages. I stopped going on purpose for a while cause it made me really upset to think I could've been doing that as a career, but nevermind!
Panto went really well, especially considering the not so pleasant circumstances surrounding it. Only thing I will say is it wasn't as cold outside this year as last, so while the hall was a slightly more pleasant temperature at the beginning of each performance, by the end it was roasting and gave me a beasting sinus headache every night without fail. They get particularly bad if it's too warm, probably down to slight dehydration.
My financial situation has picked up a bit too, thank goodness! I got a lovely tax rebate which will pay my tax bill, I'm due money from the council which should be enough to pay my national insurance bill, and I finally got housing money sorted out. What a nightmare it's been though, the council can expect a big complaint letter, written by James on my behalf (cause he's better at stuff like that). They have literally messed up at every stage, and have driven me to insanity.
I was really feeling unwell the other week after the kleanprep, probably the crappest I've felt in a wee while. I'm putting it down to not being properly cleared out and also the stress of trying to deal with morons. But anyway, I broke my own rule at zumba that week. Normally, even if I feel really rubbish and can't stop coughing, I still do the full class (well, as much as possible) but take it easy, but this time resulted in me sobbing in the toilet with a green/grey face and dry wretching over the toilet, so I put my jumper on and sat out. I've since had more kleanprep cause I was curled up on my living room floor crying in agony lol. How I love being reduced to behaving like a baby in my own home.
Anyway, I've been feeling a lot better since so I'll cheer up this post a bit now.
James finishes school for 3 weeks in 1.5 weeks, yay! He is coming home tomorrow, then next weekend too, before coming home on Thursday 22nd, just in time for Christmas. My Christmas tree is still standing after 3 days, which is a massive improvement on last year, as after 3 days I'd taken it down thanks to my crazy cat tipping it over about 4 times a day. There are a few presents wrapped and under the tree, although I still have lots to buy.
I've spent today in my pjs cause police advised not to travel (thanks "hurricane bawbag") so I cancelled my lessons and rearranged them for Saturday and Monday. It's been bliss, not doing anything, but only really cause I've wound right down and want my 2 weeks holiday to happen right now.
Sending lots of love to all you poorly bears out there, this time of year sucks :( *hugs!* xxx
PS yesterday I was taken to see We Will Rock You in Edinburgh as part of my christmas from mum and dad :) it was me, mum, dad and my brother James. It was cool :) really liked it and haven't been to the theatre for ages. I stopped going on purpose for a while cause it made me really upset to think I could've been doing that as a career, but nevermind!
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