Well I have only injured my fingers once more since my last post, this time I managed to get a key stuck into my flesh whilst trying to lift it off a hook, the result was three gashes in my finger, one which insisted on bleeding every time I took the plaster off for about two days. I now seem to have got a hair stuck in it from when I've been cutting hair and I can't get it out, so now it hurts when pressure is put on it! Six days have passed and no injury, so perhaps that part of my life is over now, phew!
We have ordered our new fridge freezer, we went for the retro one as we found a website that sold it alot cheaper online, whether it turns up is a different matter! Pete, my dad and brother took out the old one on Saturday and got rid of the integrated cupboard, the freezer is still working for now, I hope it doesn't pack in before the new one arrives! We need to put some flooring where the cupboard was else the new fridge freezer will not be level, Pete says there are some spare in the garage and he'll just need to saw them to fit them in the gap. I hope it is as simple as he says! We all know Pete and I are not the best at DIY!
I've not been up to much this week, we have a few expensive weeks coming up so we are saving our money for those! However I did go out for a pub tea with my friends last Friday and then an Italian with my family on Saturday for my brothers birthday, so not doing too bad! That reminds me, I had serious gutwack on Sunday morning. I don't think I took enough tablets with my meal! I was sweating all night and then woke up in the morning with terrible stomach and back ache. This was proceeded by me sitting on the toilet for so long Pete came to check that I was OK and when I left I advised him not to use the bathroom for a while. Not pleasant and I won't go into anymore details of what gutwack consists of as it ain't pretty!
We have Hever Castle coming soon and I'm majorly excited! We are also going to decorate the front room over Easter and I've already purchased the wallpaper. I've been investigating my options as to how I can prevent breathing in any fungus when we strip the wallpaper. A CF friend suggested these special light bulbs that destroy any spores that come into contact with the bulb (http://www.eudemonuk.co.uk) so I'm going to order one of those and then get a mask specifically to stop you breathing in mould spores.
This morning Pete found two little bottles of Tropicana on our doorstep! I was straight away suspicious whereas Pete thought it was nice. Anyway Pete has drunk his and is still alive and I looked on the Internet and it seems it's some kind of promotion! They are on every ones doorsteps so now I'm starting to think it's nice too, maybe I should become more trusting..?
Friday, 8 April 2011
Wednesday, 30 March 2011
Sore fingers!
This week it seems to have been my mission to destroy my hands and fingers! First of all I wound up my friends cat with some wool and ended up getting a nice scratch on the skin in between my fingers which was really tender for a day or two. I don't blame the cat, I was annoying him but rightly so since I'd just had to dispose of a dead magpie he had presented to me as a gift! Poor thing!
Then I trapped my finger in a door, why do you hop up and down when that happens? Does it help somehow?! Then I hit another finger on the corner of a cupboard door, the nail side, this still hurts now. Then to finish it off I somehow scrapped a few lairs of skin off another finger, I don't even recall doing this but I know it bloody hurts when I try to bend my finger! So yes, I'm a walking disaster this week!
Our fridge has broken again! Can't believe it! There I was sat eating my coco pops on Saturday morning and again I realised the milk was warm, disaster! An engineer came out to see it today and apparently when it was fitted (before we moved in) they haven't put any holes in the bottom of the cupboard for ventilation and the compressor has broken which will cost about £300 to fix! So we are just going to get a new fridge freezer and hopefully get rid of the inter grated one and buy a normal free standing one. We went to look at them on Sunday in preparation for the bad news and saw this ace retro one that was quite expensive. Anyway the engineer said they are OK but not that good so sadly we may be sensible and get a normal looking fridge.
I'm feeling alot better this week, I even managed to go food shopping on my own. Now it's getting warmer I don't cough as much outside and can manage to put the bags in the car and take them out easier. The trolley is still hard work to push around since I'm a breathless weakling and trolleys have a mind of their own. However my chest is feeling miles better this week so I managed quite well. I went for a massage on Friday and have felt progressively better since the end of last week, so maybe it has helped, who knows?! To be honest I think massages are overrated, it was OK but I didn't like all the oil, I could hear it squelching and all I could think of was how sticky my skin was going to be when she had finished! I think I need to get a proper massage by a trained sports masseuse as I didn't feel like she pressed on hard enough to loosen up my muscles.
Pete is gym obsessed and going 4-5 times a week in preparation for the Great North Run, making me feel very bad with my twice a week attempts. He also somehow managed to talk me out of getting takeaway curry last night because he wants to be healthy whereas I don't care. There is defiantly a clash sometimes meal wise, I want high calories but I don't want a fat husband!
That's about my week summed up...!
Then I trapped my finger in a door, why do you hop up and down when that happens? Does it help somehow?! Then I hit another finger on the corner of a cupboard door, the nail side, this still hurts now. Then to finish it off I somehow scrapped a few lairs of skin off another finger, I don't even recall doing this but I know it bloody hurts when I try to bend my finger! So yes, I'm a walking disaster this week!
Our fridge has broken again! Can't believe it! There I was sat eating my coco pops on Saturday morning and again I realised the milk was warm, disaster! An engineer came out to see it today and apparently when it was fitted (before we moved in) they haven't put any holes in the bottom of the cupboard for ventilation and the compressor has broken which will cost about £300 to fix! So we are just going to get a new fridge freezer and hopefully get rid of the inter grated one and buy a normal free standing one. We went to look at them on Sunday in preparation for the bad news and saw this ace retro one that was quite expensive. Anyway the engineer said they are OK but not that good so sadly we may be sensible and get a normal looking fridge.
I'm feeling alot better this week, I even managed to go food shopping on my own. Now it's getting warmer I don't cough as much outside and can manage to put the bags in the car and take them out easier. The trolley is still hard work to push around since I'm a breathless weakling and trolleys have a mind of their own. However my chest is feeling miles better this week so I managed quite well. I went for a massage on Friday and have felt progressively better since the end of last week, so maybe it has helped, who knows?! To be honest I think massages are overrated, it was OK but I didn't like all the oil, I could hear it squelching and all I could think of was how sticky my skin was going to be when she had finished! I think I need to get a proper massage by a trained sports masseuse as I didn't feel like she pressed on hard enough to loosen up my muscles.
Pete is gym obsessed and going 4-5 times a week in preparation for the Great North Run, making me feel very bad with my twice a week attempts. He also somehow managed to talk me out of getting takeaway curry last night because he wants to be healthy whereas I don't care. There is defiantly a clash sometimes meal wise, I want high calories but I don't want a fat husband!
That's about my week summed up...!
Wednesday, 23 March 2011
Unexplainable Feelings
I feel like I'm struggling emotionally at the moment and I don't really know why. I have tried to cheer myself up by trying to keep busy but as soon as I'm on my own or doing my physio/nebuliser, I feel this sense pulling on my mind that it's all fake and underneath I am not as happy as I like to make everyone believe, does everyone feel like this?! I can't even explain what is wrong with me, for example on Sunday we'd had Pete's parents around for lunch and had a nice day. Then in the evening I started to do my physio and I just got so annoyed. It occurred to me that I spend an hour of every evening and morning doing my bloody physio, I can watch a whole TV programme doing physio, it doesn't seem a big deal but we started watching 'The Event' on catch up and I just thought to myself 'I'm still going to be doing my physio when this finishes' and I'm going to be doing this every night for the rest of my life. Then I started to imagine what it must be like to not be chained to a demanding treatment regime everyday and wonder how you are going to fit it in around everything. What it must be like to just be able to do things without consulting your doctor or feel like you are arranging a military operation. Anyway the result was that I had a massive cry which involved me telling Pete I just want to be normal, that's all I want.
It doesn't help that I have been off my IVs a week and I already have a cough and getting breathless doing small tasks, Pete even got annoyed with me last night as I kept waking him up coughing. I can't understand this coughing during the night, it's so unusual for me! A day can't go by where someone doesn't comment on my cough, it drives me absolutely crazy. I don't even know what I want people to do instead, I'd just rather not have a cough!
I don't want to ring the hospital, I can put up with it and I'm getting on with my everyday activities, is that what I'm supposed to do? After all I do have CF... or should I tell my team? Sometimes I forgot what is normal for me and what's not. Will they think I'm just paranoid or even worse put me on my IVs again or even worse, make me go into hospital?! If I think about even going into hospital these are the first thoughts that go through my head 'who will look after Alfie and Pete?' 'will my travel insurance still cover me?' 'people will judge me and think I shouldn't be trying to have a baby'. I don't feel unwell like I need to go into hospital but I haven't been in for years and it's only March and I've had 2 sets of IVs already, so I start to get all these random thoughts about what my CF team will suggest!
My friend suggested I ask to be referred to see the CF psychologist, she knows the team and says they are really nice. However I'm not depressed, I just feel abit fed up and I don't want it to be on my records, it's not like they can make my CF go away! She says it could help me though as I don't really tell people how I'm feeling as I'm embarrassed and I don't like people to worry about me. Also people don't understand as people seem to think that if you have a long term illness you just accept your life will be different and learn to deal with it, which I think I tend to do OK with most of the time. I'll see how I feel in a week or so, I usually have these little self pity moments and recover fine.
I actually feel guilty for feeling fed up, there isn't actually that much wrong with my life and much worse things happening in the world. I think all this surrogacy stuff (see my surrogacy blog) along with me not feeling great health wise at the moment is getting me down and I'm worried people especially in the surrogacy world will judge me (as I think some already have). I feel like I constantly have to prove I can cope and my CF is manageable. I just hate CF, it lurks everywhere and seems to taint everything I do no matter how much I try to not let it. In addition to this, my mum is on holiday and I wish she was here. Jeez I really am feeling pathetic today if I want my mummy....! I'm just glad we have got lots of trips and holidays coming up that are sure to cheer me up! If I have a plan or goal I usually feel better!
To end on a positive note after a downer post, here I am on Comic Relief ready to take donations!
It doesn't help that I have been off my IVs a week and I already have a cough and getting breathless doing small tasks, Pete even got annoyed with me last night as I kept waking him up coughing. I can't understand this coughing during the night, it's so unusual for me! A day can't go by where someone doesn't comment on my cough, it drives me absolutely crazy. I don't even know what I want people to do instead, I'd just rather not have a cough!
I don't want to ring the hospital, I can put up with it and I'm getting on with my everyday activities, is that what I'm supposed to do? After all I do have CF... or should I tell my team? Sometimes I forgot what is normal for me and what's not. Will they think I'm just paranoid or even worse put me on my IVs again or even worse, make me go into hospital?! If I think about even going into hospital these are the first thoughts that go through my head 'who will look after Alfie and Pete?' 'will my travel insurance still cover me?' 'people will judge me and think I shouldn't be trying to have a baby'. I don't feel unwell like I need to go into hospital but I haven't been in for years and it's only March and I've had 2 sets of IVs already, so I start to get all these random thoughts about what my CF team will suggest!
My friend suggested I ask to be referred to see the CF psychologist, she knows the team and says they are really nice. However I'm not depressed, I just feel abit fed up and I don't want it to be on my records, it's not like they can make my CF go away! She says it could help me though as I don't really tell people how I'm feeling as I'm embarrassed and I don't like people to worry about me. Also people don't understand as people seem to think that if you have a long term illness you just accept your life will be different and learn to deal with it, which I think I tend to do OK with most of the time. I'll see how I feel in a week or so, I usually have these little self pity moments and recover fine.
I actually feel guilty for feeling fed up, there isn't actually that much wrong with my life and much worse things happening in the world. I think all this surrogacy stuff (see my surrogacy blog) along with me not feeling great health wise at the moment is getting me down and I'm worried people especially in the surrogacy world will judge me (as I think some already have). I feel like I constantly have to prove I can cope and my CF is manageable. I just hate CF, it lurks everywhere and seems to taint everything I do no matter how much I try to not let it. In addition to this, my mum is on holiday and I wish she was here. Jeez I really am feeling pathetic today if I want my mummy....! I'm just glad we have got lots of trips and holidays coming up that are sure to cheer me up! If I have a plan or goal I usually feel better!
To end on a positive note after a downer post, here I am on Comic Relief ready to take donations!
Thursday, 17 March 2011
Red Nose Day
I'm IV free! Wahoo! I swear this time around it has felt like they have lasted forever and I don't think I could have done another week!
I'm not sure what my lung function is as the physio gave me it in litres rather than a percentage, she said my fev1 was about the same, to me its either the same or not! Even a 1% increase is an improvement! She also said my fvc was up quite abit, again, not idea what 'abit' is! My sats are now sitting at 98-99% which is brilliant, they aren't that high very often!
I am feeling alot better, not as breathless or chesty and I wanted to come off the damn IV's and the Doctor had no concerns so wahoo! I've also been given some gel to put in my eyes to help lubricate them and some anti histamines, I asked for to cream to get rid of the dry skin and itchiness but I wasn't allowed! The Doctor thinks it's an allergy problem, I have to ring back if this stuff doesn't work. The Doctor also said to not wear my contact lenses for a week, yeah right! As if I am going to spend a week wearing my ugly glasses! The leaflet for the eye gel says to not wear contacts for 30 minutes after putting it in, so that is what I've been doing and wearing my glasses when at home. That's as far as I will go!
I started yoga again on Monday, it's so good to get back in to the swing of things. I'm going to try start swimming again now that it's getting warmer and lighter, it seems to give me the motivation to do it!
Our shower is driving me crazy, my first shower of two weeks was very disappointing...! Their is a leak in the pipe and also the thing you lift on the tap to make water come out of the shower rather than the bath taps, isn't working properly. So basically when you get a shower the pressure is pathetic as their is water spraying out of the pipe and leaking out of the tap. Pete and I's DIY skills are poor so I am dreading out attempts to fix this problem!
I'm going out for a meal with my friends tonight so should be good as there are a few things I want to get off my chest and get opinions on as well as catch up with them! Then tomorrow night I am volunteering to take calls for Red Nose Day! I think I will be one of the people you speak to if you ring up to donate money, not really sure! My friend works for British Gas and their call centre is taking some of the calls and he was asking friends and family to help out, so I though, why not? Wish me luck!
Friday, 11 March 2011
The Great North Run
My laptop is driving me crazy, hence why I am blogging less these days. It is so slow that I am going on it less and less as every time I come on it, I think I get high blood pressure and there is a risk I may throw it across the room! To be honest I think it's on it's last legs, I've had it since my second year of uni so that's about 6 years and I assume one day it is just going to die on me. However I can't afford a new one and I have no idea how to try and speed it up, plus I dread having to transfer all my files across to a new computer.
In addition to this I'm not sure if this blog is really serving a purpose anymore. I get bored of talking about myself and my CF since it's pretty much the same stuff over and over again, I don't know if anyone is interested in what I have been doing in my day to day activities. Maybe blogs are so last year or I need to change the angle of it, maybe I've outgrown it. I'm not sure. Anyway, that's why I am blogging less and probably will continue to do so but I'm not giving up on this baby yet, there is alot of my life from the past few years on here and it's grown to be full of information and it's interesting to look back and see how I've changed. My life is abit dull at the moment, I feel like it's not really going anywhere, but hopefully that will change over the coming months!
So I'm still on my IV's, I will hopefully finish them on Monday. I am feeling better but still not to my normal self so that's why I say 'hopefully'. I'd rather do an extra week than end up back on them in a month! The nurse came to see me on Tuesday and my sats are back to 97% so that's a relief. One problem I've been having more than usual is my eyes, they are so sore which always happens when I'm on ceftaz. They weep and all the skin on my eyelids and around my eyes gets dry and goes red, but this time my actual eye balls have felt like they were on fire at some points. I bought some eye drops for tired eyes from boots yesterday and they seem to help, it really annoys me though as my eyes look tired and sore and it makes me look poorly which I don't like, plus I can't wear any eyeshadow or eyeliner!! Other than that the side effects have been minimal, I think taking the anti sickness tablets really helps, it just gets rid of that blugh feeling.
I had abit of a crazy day on Sunday, we had lots of things to do with family and friends which meant some careful planning to fit my IVs in! I have my ceftaz 3 times a day and it takes 45 minutes to go through, the doses have to be a minimum of 6 hours apart from when the drug finishes. Usually I do them at about 7am so they have finished for 8am, then 2pm so they finish at 3pm and then about 9pm of whenever my tobramycin has gone through as I put that on at 8pm.
However on Sunday I had to get up at 5am so they finished for 6am so then I could put my second dose on at 12 whilst we were in the car on the way to Stockport. Then I had to take my evening tob and ceftaz with me in a cooler bag (they have to be kept refrigerated) as I knew we wouldn't be setting off to come home until late and we would be in a restaurant so I couldn't start them till we were in the car on the way home. In the end we didn't leave until 9.30pm and I had forgotten to get the drugs out of the cooler bag (they have to be taken out of the fridge at least 30 minutes before you use them to warm up abit) so sat with them in between my legs for 15 minutes to warm them up, so didn't get them on until 9.45pm and those two drugs take about 2 hours in total to go through. Then on top of this I had to do my physio when we got home at about half past ten. I can see why I get annoyed when people have silly excuses for not doing things that they have arranged, some people have no idea what length others have to go to, to do 'normal' activities.
This week I haven't done much, in fact I have felt quite lonely and down. I haven't seen my best friends for ages as they are always busy and then the time I did arrange to go out with them I wasn't well enough to go out. One of them is hopefully coming around tonight to watch a DVD, I don't think I have seen her since New Years Eve, how sad is that?! I shall be telling her she is neglecting me so it doesn't happen again!
On a totally separate note, my wonderful husband is going to do the Great North Run in September. It's a half marathon which is 13 miles and he is unsurprisingly doing it for the CF Trust! He has been getting up at 6.30am and going to the gym before going to work, so I hope you can all reward him by sponsoring him, even if it's just a few pounds. I'm going to attempt to put a link at the side of my blog because I know September is quite awhile away so you all have plenty of time to sponsor when you can afford to and the link will be there winking at you to remind you!! Here's a picture of my husband to remind you how fab he is and why you should sponsor him!!
Friday, 4 March 2011
VX-770
There has been some news surrounding CF and a tablet that can possibly help people with CF
Taken from the Daily Mail online (click here for the link)
The first drug to tackle the root cause of cystic fibrosis, rather than just the symptoms, could go on sale next year.
In trials, the twice-a-day pill dramatically improved the lung health of men and women with the debilitating condition.
They also put on weight and needed fewer antibiotics.
If trials on children are as successful, manufacturers Vertex Pharmaceuticals could apply later this year for permission to market the drug in Europe. Clearance is likely in 2012.
Britain's 8,000 adults and children with cystic fibrosis include Gordon Brown's four and a half-year-old son Fraser.
Cystic fibrosis is the UK’s most common life-threatening inherited condition and occurs when a genetic flaw produces a defective version of a protein key to the health of the lungs and digestive system.
Thick, sticky mucus clogs these organs, leading to recurrent chest infections and poor growth. Other symptoms include diabetes and infertility.
Although treatments have improved greatly in recent years, average life expectancy is under 40 and there is no cure.
In the trial, 161 people with cystic fibrosis were given either the new drug, which is known only as VX-770, or a dummy drug two times a day for a year.
At the outset, most of those taking part had just 60 per cent of the lung function of a healthy person - a figure that improved by almost 20 per cent by giving VX-770.
No other drug has produced such dramatic improvements, this week’s New Scientist reports, probably because they have tackled symptoms rather than the underlying cause, a defective protein in lung cells.
Patients also put on an average of half a stone in weight, suggesting the disease’s effects on digestion were eased, and were half as likely to need antibiotics for flare-ups.
Peter Mueller, Vertex’s chief scientific officer, said: ‘Treating the underlying cause of cystic fibrosis with VX-770 led to clinical improvements that were far beyond our expectations, providing support for an entirely new approach to the treatment of this disease.’
The Cystic Fibrosis Trust described the results as ‘very big news’ but cautioned that VX-770 would only be suitable for about 5 per cent of sufferers.
But a second drug, that is at an earlier stage in development, offers hope to another 75 per cent of patients.
Vertex is already testing a combination of the two drugs on patients and the first results are expected within months.
Now I'm not going to get excited, I'm not in that 5% and it's not a cure. I don't believe they will find a cure in my lifetime but I do believe treatments are improving all the time to increase average life expectancy. I have the common mutations of DF508 which I assume is the 75% they talk about, which they are running tests on next. But it's nice to know that in my lifetime there may be some people with CF who can take a tablet that deals with the cause of CF rather than the effects, there just isn't anything like that at the moment.
When I read that they have achieved a medication like this for my mutation and its available to take, that will be the day I have tears of joy in my eyes. Either way its great news for that 5%, it's not a cure but it's start!
Taken from the Daily Mail online (click here for the link)
The first drug to tackle the root cause of cystic fibrosis, rather than just the symptoms, could go on sale next year.
In trials, the twice-a-day pill dramatically improved the lung health of men and women with the debilitating condition.
They also put on weight and needed fewer antibiotics.
If trials on children are as successful, manufacturers Vertex Pharmaceuticals could apply later this year for permission to market the drug in Europe. Clearance is likely in 2012.
Britain's 8,000 adults and children with cystic fibrosis include Gordon Brown's four and a half-year-old son Fraser.
Cystic fibrosis is the UK’s most common life-threatening inherited condition and occurs when a genetic flaw produces a defective version of a protein key to the health of the lungs and digestive system.
Thick, sticky mucus clogs these organs, leading to recurrent chest infections and poor growth. Other symptoms include diabetes and infertility.
Although treatments have improved greatly in recent years, average life expectancy is under 40 and there is no cure.
In the trial, 161 people with cystic fibrosis were given either the new drug, which is known only as VX-770, or a dummy drug two times a day for a year.
At the outset, most of those taking part had just 60 per cent of the lung function of a healthy person - a figure that improved by almost 20 per cent by giving VX-770.
No other drug has produced such dramatic improvements, this week’s New Scientist reports, probably because they have tackled symptoms rather than the underlying cause, a defective protein in lung cells.
Patients also put on an average of half a stone in weight, suggesting the disease’s effects on digestion were eased, and were half as likely to need antibiotics for flare-ups.
Peter Mueller, Vertex’s chief scientific officer, said: ‘Treating the underlying cause of cystic fibrosis with VX-770 led to clinical improvements that were far beyond our expectations, providing support for an entirely new approach to the treatment of this disease.’
The Cystic Fibrosis Trust described the results as ‘very big news’ but cautioned that VX-770 would only be suitable for about 5 per cent of sufferers.
But a second drug, that is at an earlier stage in development, offers hope to another 75 per cent of patients.
Vertex is already testing a combination of the two drugs on patients and the first results are expected within months.
Now I'm not going to get excited, I'm not in that 5% and it's not a cure. I don't believe they will find a cure in my lifetime but I do believe treatments are improving all the time to increase average life expectancy. I have the common mutations of DF508 which I assume is the 75% they talk about, which they are running tests on next. But it's nice to know that in my lifetime there may be some people with CF who can take a tablet that deals with the cause of CF rather than the effects, there just isn't anything like that at the moment.
When I read that they have achieved a medication like this for my mutation and its available to take, that will be the day I have tears of joy in my eyes. Either way its great news for that 5%, it's not a cure but it's start!
A fellow blogger has a daughter with CF and she has done a great blog explaining more about the drug and how it works, click here to view
Thursday, 3 March 2011
Revenge of the Sputum
Well I'm starting to feel slightly better in myself but I can't really say things have improved chest wise yet. I'm coughing less but when I do cough it's so productive and gloopy that I can't budge it especially since my airways seem to tighten up. I went to the toilets in Wetherspoons today which were upstairs and when I got into the cubicle I coughed so hard I started retching and proceeded to bring up some sputum unexpectedly. Luckily none went on my clothes and I grabbed a tissue before it projected out of my mouth! Not the highlight of my day but never mind!
I also kept waking up last night feeling like I couldn't breathe and taking big gasps on air in. It felt like there was a blanket of sputum over my airways, and when I breathed in it made a really loud wheezing noise and loosened the blanket but then when I tried to cough the sputum up I couldn't! In addition to this my sputum has had tiny dots of blood in it, nothing serious but it's still worth noting. Needless to say there is some freaky stuff going on and I just want to get back to normal please!
Yesterday I went to Scope and got a free mini massage. They arranged for a lady to come and do a taster session and I asked her to focus on my shoulders and back as they are tight from all the coughing. I'm thinking about booking a session as it might help with my posture and help me cough better. Just depends on if I can afford it really! My yoga teacher suggested I get a massage to help relax the tension since I can't go to yoga classes whilst on my IVs, so maybe I will!
Today I was supposed to meet my new mentee for an introduction session which is why I was at Wetherspoons, but she didn't turn up. So instead me and the other lady from Scope had some lunch so it wasn't a wasted journey! I had a curry that tasted more like a chinese, very strange!
Other than that I've been reading my book and learning quite abit about the first world war in the process and doing my knitting! I'm ashamed to say I haven't taken Alfie out for a walk yet this week, but at the end of the day that's why we got a small dog that doesn't need much exercise. A good run around the garden after the birds keeps him fit and I have promised him I will take him for a walk tomorrow! That's about my week so far! See you later folks!
I also kept waking up last night feeling like I couldn't breathe and taking big gasps on air in. It felt like there was a blanket of sputum over my airways, and when I breathed in it made a really loud wheezing noise and loosened the blanket but then when I tried to cough the sputum up I couldn't! In addition to this my sputum has had tiny dots of blood in it, nothing serious but it's still worth noting. Needless to say there is some freaky stuff going on and I just want to get back to normal please!
Yesterday I went to Scope and got a free mini massage. They arranged for a lady to come and do a taster session and I asked her to focus on my shoulders and back as they are tight from all the coughing. I'm thinking about booking a session as it might help with my posture and help me cough better. Just depends on if I can afford it really! My yoga teacher suggested I get a massage to help relax the tension since I can't go to yoga classes whilst on my IVs, so maybe I will!
Today I was supposed to meet my new mentee for an introduction session which is why I was at Wetherspoons, but she didn't turn up. So instead me and the other lady from Scope had some lunch so it wasn't a wasted journey! I had a curry that tasted more like a chinese, very strange!
Other than that I've been reading my book and learning quite abit about the first world war in the process and doing my knitting! I'm ashamed to say I haven't taken Alfie out for a walk yet this week, but at the end of the day that's why we got a small dog that doesn't need much exercise. A good run around the garden after the birds keeps him fit and I have promised him I will take him for a walk tomorrow! That's about my week so far! See you later folks!
Monday, 28 February 2011
Lost Battle
Well I'm afraid the cold won.
I started IV's today, I'm quite fed up if I'm honest. It's only about 4 or 5 weeks since my last set of IV's.
After my last post I developed a terrible productive cough and by the Friday I was coughing up about 2 sputum pots worth of sputum a day, I usually cough up about half a pot in a day. I'm not sure how much one sputum pot holds, maybe 60mls? I literally had to have a pot with me at all times as every time I coughed, sputum came up and it was large and thick. I was also coughing sputum up in the night which I don't usually do and waking up covered in sweat.
So I called the hospital on Thursday and asked if I could start oral ciprofloxacin, I was told by a Doctor I don't know that I needed to come to outpatients on the next day. So I went to outpatients the next day which was a pain as the fridge man was coming anytime before 1pm and my appointment was at 1.10pm, so Pete had to finish work at lunchtime as the guy still hadn't arrived by 12 and I didn't know how long he would take when he arrived. In the end he arrived at 12.15 and was gone by 12.30, but Pete had set off by then. Never mind!
At outpatients I was informed that in future to ask for one of the main CF doctors as they would have just put me straight on IVs or just told me to take cipro without seeing me, how frustrating!! Anyway my lung function was actually up to 44%, my weight was stable and my sats were 'acceptable' so I was sent home on cipro and told to phone back on Monday to update them.
Saturday was a horrible day, I think the cipro made my whole body ache and was coughing so much it was hurting my back and shoulders. I had to cancel the night out for my friends birthday and my friend wanted me to at least go around to see them before they went into town, but I couldn't face having to cough in to a pot in front of my friends and their friends who I don't even know. I hate seeing people cough up sputum and I have CF, so I can imagine how much it freaks other people out and it's just so embarrassing!
On Sunday afternoon I started to feel better, I was coughing less and even though I was still coughing loads of sputum up, it was less then previously. So on Monday I called the hospital and said I was improving, so I was told to give it a few more days on the cipro.
By Thursday I'd had enough, I am still coughing, there is just sputum sat constantly in my throat and in my chest, when I breath I can hear it bubbling and I'm starting to get headaches from the coughing. However now I am also getting breathless easily, for example I cleaned the table last night after tea and couldn't catch my breath to shout Alfie to come in from outside. When I do my physio it's like my chest tightens up and even though I know there is sputum there I can't get it up. So I've started IV's today, tobramycin and ceftazidime, I asked for tobramycin as I think it's better than colomycin, plus it's once day so easier to organise around!
My lung function today was fev1 39% fvc 54%, weight is still stable but my sats are 94% which seems low for me. Nobody seems concerned about it though, I suppose it just backs up the fact I'm feeling breathless.
I have been up to other things, my like doesn't revolve around CF even though you might think so reading this blog at times! When you have CF you soon learn that the world carries on and so must you. Pete and I went for Tapas last night, I watched Come Dine with Me on Saturday and she made Tapas and I just had an urge for it so we went the next day. My knitting project is coming on well and I can now cast on and cast off, wahoo! I've also been doing my voluntary work and meeting my new mentee this week and I'm going for a massage session/training which should be good!
I started IV's today, I'm quite fed up if I'm honest. It's only about 4 or 5 weeks since my last set of IV's.
After my last post I developed a terrible productive cough and by the Friday I was coughing up about 2 sputum pots worth of sputum a day, I usually cough up about half a pot in a day. I'm not sure how much one sputum pot holds, maybe 60mls? I literally had to have a pot with me at all times as every time I coughed, sputum came up and it was large and thick. I was also coughing sputum up in the night which I don't usually do and waking up covered in sweat.
So I called the hospital on Thursday and asked if I could start oral ciprofloxacin, I was told by a Doctor I don't know that I needed to come to outpatients on the next day. So I went to outpatients the next day which was a pain as the fridge man was coming anytime before 1pm and my appointment was at 1.10pm, so Pete had to finish work at lunchtime as the guy still hadn't arrived by 12 and I didn't know how long he would take when he arrived. In the end he arrived at 12.15 and was gone by 12.30, but Pete had set off by then. Never mind!
At outpatients I was informed that in future to ask for one of the main CF doctors as they would have just put me straight on IVs or just told me to take cipro without seeing me, how frustrating!! Anyway my lung function was actually up to 44%, my weight was stable and my sats were 'acceptable' so I was sent home on cipro and told to phone back on Monday to update them.
Saturday was a horrible day, I think the cipro made my whole body ache and was coughing so much it was hurting my back and shoulders. I had to cancel the night out for my friends birthday and my friend wanted me to at least go around to see them before they went into town, but I couldn't face having to cough in to a pot in front of my friends and their friends who I don't even know. I hate seeing people cough up sputum and I have CF, so I can imagine how much it freaks other people out and it's just so embarrassing!
On Sunday afternoon I started to feel better, I was coughing less and even though I was still coughing loads of sputum up, it was less then previously. So on Monday I called the hospital and said I was improving, so I was told to give it a few more days on the cipro.
By Thursday I'd had enough, I am still coughing, there is just sputum sat constantly in my throat and in my chest, when I breath I can hear it bubbling and I'm starting to get headaches from the coughing. However now I am also getting breathless easily, for example I cleaned the table last night after tea and couldn't catch my breath to shout Alfie to come in from outside. When I do my physio it's like my chest tightens up and even though I know there is sputum there I can't get it up. So I've started IV's today, tobramycin and ceftazidime, I asked for tobramycin as I think it's better than colomycin, plus it's once day so easier to organise around!
My lung function today was fev1 39% fvc 54%, weight is still stable but my sats are 94% which seems low for me. Nobody seems concerned about it though, I suppose it just backs up the fact I'm feeling breathless.
I have been up to other things, my like doesn't revolve around CF even though you might think so reading this blog at times! When you have CF you soon learn that the world carries on and so must you. Pete and I went for Tapas last night, I watched Come Dine with Me on Saturday and she made Tapas and I just had an urge for it so we went the next day. My knitting project is coming on well and I can now cast on and cast off, wahoo! I've also been doing my voluntary work and meeting my new mentee this week and I'm going for a massage session/training which should be good!
Wednesday, 16 February 2011
Gemma vs the Common Cold
Our fridge has broken! I noticed my milk in my cereal wasn't very cold, so investigated and it turns out the fridge is about 18 degrees, so warmer than the house I think! Luckily I have my IV fridge to use (having CF can have benefits) and all the food seemed OK. So we are finally getting someone to fix it on Friday (its been broken for about a week now), at least having to walk into the spare room to get items out of the other fridge is giving us some exercise...!
My knitting is going well, I can now knit, pearl and do ribbing. I am starting my first proper item soon but I can't say what is is as it's a surprise for someone and they might read this blog!
Poor Alfie has had a bit of a rough week, I took him to the vets on Monday as he keeps getting tummy problems, its gargles so loud and he won't eat and is sick. The vet has suggested a bland diet and given us some medicine to give him when his belly starts to gurgle to help it settle. I was asked if I knew how to use a syringe to give the medicine which made me smile... Anyway he can now only have fish, chicken, turkey, rice, pasta and mash potato. No more pork chops and sausages!! (supplied by my dad for free from his work). He is also on a special dog food for his breakfast that is for dogs with sensitive tummy's and has probiotics in it. Who knew dogs dietary requirements were so complex?! On top of this he has conjunctivitis, very common in chihuahuas as they have massive eyes that stick out and are so close to the ground so get all the dust in them, so he has to have eye drops which seem to have given him the runs! I was welcomed yesterday morning by a kitchen full of his dinner all thrown back up and poo everywhere. Anyway it seems to have settled now and he is back to his cheeky self, fingers crossed!
I haven't had a great few days myself to be honest, I felt fine last week and went to Stockport on Friday to meet a friend and then out for a meal in the evening for my brothers birthday.
Then on Saturday morning I woke with a sore throat so gargled TCP and did vicks first defence all day. By Sunday I had throbbing sinuses, I swear I thought if I looked in a mirror the whole area around my eyes and top of my nose would be visibly throbbing! I continued with the TCP and vicks first defence as well as taking sudafed and plenty of pain killers and went down to Derby to catch up with my friends from university, probably not the best idea but it's been planned for months and I wasn't going to cancel because of a stupid cold.
Sunday night I dreamt I had the worst ear ache ever and then promptly woke up and realised it was true, I was so scared something had crawled in my ear it hurt so much! Pain killers took the pain away thankfully and I managed to fall back asleep easily. On Monday the sinus pain seemed to have settled, I had/have increased my sinus nasal wash to twice a day so perhaps that has helped, i've given up with the vicks first defence. However I now seem to have developed a raspy cough which makes my throat and top of my chest feel red raw, every time I cough I think I might cough up a tonsil or something but so far it's just sputum thankfully!
So my plan of action is as follows: have sputum pot available for me to cough into as otherwise i'll have toilet problems next and be feeling sick as sputum is difficult to digest if you swallow it! Continue to gargle TCP twice a day, continue to do sinus nasal rinse twice a day and do hypertonic saline nebuliser 4 times a day (usually done twice a day) to keep chest clear and stop mother f*cking cold reaching my lungs. I've just had IV's, my body is strong. My body is a temple. I WILL fight this...!
My knitting is going well, I can now knit, pearl and do ribbing. I am starting my first proper item soon but I can't say what is is as it's a surprise for someone and they might read this blog!
Poor Alfie has had a bit of a rough week, I took him to the vets on Monday as he keeps getting tummy problems, its gargles so loud and he won't eat and is sick. The vet has suggested a bland diet and given us some medicine to give him when his belly starts to gurgle to help it settle. I was asked if I knew how to use a syringe to give the medicine which made me smile... Anyway he can now only have fish, chicken, turkey, rice, pasta and mash potato. No more pork chops and sausages!! (supplied by my dad for free from his work). He is also on a special dog food for his breakfast that is for dogs with sensitive tummy's and has probiotics in it. Who knew dogs dietary requirements were so complex?! On top of this he has conjunctivitis, very common in chihuahuas as they have massive eyes that stick out and are so close to the ground so get all the dust in them, so he has to have eye drops which seem to have given him the runs! I was welcomed yesterday morning by a kitchen full of his dinner all thrown back up and poo everywhere. Anyway it seems to have settled now and he is back to his cheeky self, fingers crossed!
I haven't had a great few days myself to be honest, I felt fine last week and went to Stockport on Friday to meet a friend and then out for a meal in the evening for my brothers birthday.
Then on Saturday morning I woke with a sore throat so gargled TCP and did vicks first defence all day. By Sunday I had throbbing sinuses, I swear I thought if I looked in a mirror the whole area around my eyes and top of my nose would be visibly throbbing! I continued with the TCP and vicks first defence as well as taking sudafed and plenty of pain killers and went down to Derby to catch up with my friends from university, probably not the best idea but it's been planned for months and I wasn't going to cancel because of a stupid cold.
Sunday night I dreamt I had the worst ear ache ever and then promptly woke up and realised it was true, I was so scared something had crawled in my ear it hurt so much! Pain killers took the pain away thankfully and I managed to fall back asleep easily. On Monday the sinus pain seemed to have settled, I had/have increased my sinus nasal wash to twice a day so perhaps that has helped, i've given up with the vicks first defence. However I now seem to have developed a raspy cough which makes my throat and top of my chest feel red raw, every time I cough I think I might cough up a tonsil or something but so far it's just sputum thankfully!
So my plan of action is as follows: have sputum pot available for me to cough into as otherwise i'll have toilet problems next and be feeling sick as sputum is difficult to digest if you swallow it! Continue to gargle TCP twice a day, continue to do sinus nasal rinse twice a day and do hypertonic saline nebuliser 4 times a day (usually done twice a day) to keep chest clear and stop mother f*cking cold reaching my lungs. I've just had IV's, my body is strong. My body is a temple. I WILL fight this...!
Monday, 7 February 2011
Birthday
Gosh, I don't know where the time has gone!
Here are some pictures from Saturday night
It was my birthday on Wednesday and it involved quite alot of eating! I went over to Hull with my Mum to see my youngest brother as he is at University there. We had a nosey around his accommodation and then went out for lunch. Then in the evening Pete took me out for Chinese and I ate loads! I think the lunch must have expanded my stomach in preparation.
I got a new charm for my Pandora bracelet, its my birthday stone which is purple and also my favourite colour, coincidence or not?! I also got some pj's, slippers, blu ray dvds, little purple clutch bag and then Pete is taking me to Hever Castle in April as my present, can't wait! I also got some money which is just going into our surrogacy savings.
On Thursday I went to Scope to end my latest partnership and look at starting a new one and then I had my knitting lesson in the evening. I can now pearl stitch although not very good, I keep making it too tight for some reason so got to work on making the loops looser. I'm really enjoying the lessons, it's nice to have a good chat with the lovely lady who teaches me as well as learn something new!
On Friday Pete and I went to Manchester to see a solicitor about surrogacy and then for some strange reason I went to bed at 9.30pm as I suddenly felt incredibly tired and literally as soon as my head hit the pillow I was asleep! No idea what that was about as I'm feeling pretty good at the moment. Sometimes I have lots of energy and feel great and wonder what it must be like to have this much energy all the time, I think I'd be running around like a loony! No wonder other people can do so much in a day!
On Saturday we went out with some of my family to this pub that was having a band night and raising money for CF. There wasn't much awareness raising, just a few posters and money collection tins, we entered a raffle but moved on to another pub before announced the winner! Damn it!
My skin is so bad now though, I have all red bits around my eyes and on my forehead, must have drunk too much and now I'm old it affects me more! My skin has been really dry around my eyes though since I was on IV's, I'm using aqueous cream but it doesn't seem to be doing much! So now I have dry and red skin, argh! I'm also sick of been blocked up, movicols don't seem to be doing much, think I'm going to have to up my dose to two a day instead of one a day.
Here are some pictures from Saturday night
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