Hoorah... reprieve! Either the info that I had got off the Internet was out of date or I had got the drug name wrong... more likely the latter!... but I don't have to go into hospital for IV treatment if they do have to change my drugs after all, as I can take it via my vent stream the same as my Colomycin.
I found this out by having a crisis this morning, as I only had 5 days worth of Colomycin left in my medicine box and it takes 3 days to order from the hospital. So what to do? Do I order more or if they do change my drugs, wouldn't I be wasting NHS money?
I called Ruth, my head physio and all round wise one and asked her advice.
Ruth in her wisdom said in a very serious voice, 'that it was very sweet of me to try and save the cost of a box of drugs, but that was nothing compared to the cost that a transplant was going to cost the NHS.'
I guess a bit like piddling in the ocean!?
But the good news was that she had already told them that there was no way that I should be going into hospital to have IV treatment, as I was perfectly capable of taking them through the vent stream.
Love you Ruth.
There is nothing worse than spending 10 very long days in a ward full of sick people, just to be administered an IV drug four times a day. I offered to do it myself at home on one occasion as I was so bored in there. I used to go and sit in the rose garden in the sunshine reading, but I got carried away talking to people out there on one occasion and was out there for over three hours. Unknown to me, I had triggered off a major panic in the ward, because they thought I had legged it. One of the canteen staff asked me as I sauntered in there for another drink, if I could come with them to speak to someone on the phone as I was wanted. The ward sister had put me on the most wanted list and she gave me a right rollicking on the phone and I was told to get myself back to the ward pronto as they were 5mins away from alerting security... Oh bugger!
They confiscated my slippers after that!
I had to take mother to have her blood test taken today. We picked my sister up on route as she was going to push her around the hospital in my wheelchair as I can't manage mother and myself there on my own.
To me it was just a routine blood test, but to mother it was the worse thing that had ever happened to her and she sat quietly crying in the waiting room, bless her. I suppose looking back, I've only ever known her to have blood tests twice in the last twenty years. I guess I have got so blase about hospitals and having acupuncture for many years, that I've forgotten that for most people, blood tests are completely out of their comfort zones.
Have I become a patient and not a person?
Still mother was rewarded with a lovely lunch in the very smart restaurant in St Mikes and followed by half a shandy in the beer garden at our local pub.
I think she has got to do this all over again next week poor soul, hopefully it will be less stressful for her.
Lots of love Debbie x
About Me
- Me...Debbie Burden... or known as Burders
- I'll be 55 this August... I've had bronchiectasis for ten years plus this year... End stage lung disease for the past year...been on oxygen for three years... and have I got used to it yet?... nah! I am now waiting for the biggie; a double lung and maybe a heart transplant. I love my life weirdly enough, because I have some wonderful family and friends who are with me every step of the way on my adventures, even though I embarrass them on a daily basis with my unorthodox way of looking at life. Not for the faint hearted!
Wednesday, 29 June 2011
Tuesday, 28 June 2011
I am sorry
The promised thunderstorms didn't arrive last night, but I did actually sleep better than I thought I would. Might have been down to the evening shopping trip around a large supermarket where they had their air con on full blast.
I thought the security guard was getting a bit twitchy as I walked up and down each aisle with just a pint of milk in my trolley, so I ended up buying lots of lovely bits, but reading every label very slowly indeed especially around the freezer section!
Today I helped Reni at our local church in selling books again for the 'Stepping Stones' charity and it was quite pleasant sitting outside under a tree and it was lovely to chat to people while getting involved more in the village community. I used to drive my ex mad with all my WI, school PTA and community association meetings, always dashing here, there and everywhere.
I think Reni has the same values of community life as I had and that's lovely to see in a young woman.
When we arrived at the church, we walked in on two of the church wardens saying their prayers out loud. I felt a bit uncomfortable sitting there at first as I it was almost like we were eavesdropping on their private conversations to God, but after a while it felt quite comforting listening to them as they were praying for guidance in everyday things.
I realised then that although I talk to my guardian angels everyday, I needed to apologise to the big man himself for my flippant remarks on my situation. I often say to people when they ask how long will I have to wait for an organ transplant, 'well if it's too long, then I'll start laying traps in the roads ha ha'. But that's not funny is it? I'm talking about someones life and death. I know it is the ultimate recycling, but from now on, no more jokes about how the greatest gift that I can imagine comes to me.
I had my physio today at St Mikes's and thankfully the thunderstorms had at last come and the air was a lot cooler. There is no way that I could have handled postural drainage by pummelling in yesterdays heat, just sitting in it felt like someone was holding a wet flannel over my face and expecting me to breathe through it.
Tracy the head nurse popped in to see me while I was having it done and to ask if she could take another sample. She wanted to check that all the information is the same as on my last sample. I wasn't dreaming it, they are thinking of changing my drugs as the pseudomonas is now showing resistance to my colomycin. But unfortunately this time it could involve another ten day stay in hospital for this new treatment.
I have been taking this particular drug for five years so I guess that it's understandable that it has built up a resistance, but they have changed the make only about three months ago, so it is as good as the original? Is the government's bid to save money in the NHS meaning that they are swapping better makes with cheaper, less effective drugs?
I looked up the name of the new drug that Tracy mentioned on the Internet when I got home and if I have got the correct spelling... Amikican... then it is administered by injection or IV which would involved the hospital stay that Tracy mentioned. The word bugger springs to mind.
Is this karma for my flippant remarks I wonder?
Wait and see.
I do think that those words will be engraved on my tombstone!
Lots of love Debbie x
I thought the security guard was getting a bit twitchy as I walked up and down each aisle with just a pint of milk in my trolley, so I ended up buying lots of lovely bits, but reading every label very slowly indeed especially around the freezer section!
Today I helped Reni at our local church in selling books again for the 'Stepping Stones' charity and it was quite pleasant sitting outside under a tree and it was lovely to chat to people while getting involved more in the village community. I used to drive my ex mad with all my WI, school PTA and community association meetings, always dashing here, there and everywhere.
I think Reni has the same values of community life as I had and that's lovely to see in a young woman.
When we arrived at the church, we walked in on two of the church wardens saying their prayers out loud. I felt a bit uncomfortable sitting there at first as I it was almost like we were eavesdropping on their private conversations to God, but after a while it felt quite comforting listening to them as they were praying for guidance in everyday things.
I realised then that although I talk to my guardian angels everyday, I needed to apologise to the big man himself for my flippant remarks on my situation. I often say to people when they ask how long will I have to wait for an organ transplant, 'well if it's too long, then I'll start laying traps in the roads ha ha'. But that's not funny is it? I'm talking about someones life and death. I know it is the ultimate recycling, but from now on, no more jokes about how the greatest gift that I can imagine comes to me.
I had my physio today at St Mikes's and thankfully the thunderstorms had at last come and the air was a lot cooler. There is no way that I could have handled postural drainage by pummelling in yesterdays heat, just sitting in it felt like someone was holding a wet flannel over my face and expecting me to breathe through it.
Tracy the head nurse popped in to see me while I was having it done and to ask if she could take another sample. She wanted to check that all the information is the same as on my last sample. I wasn't dreaming it, they are thinking of changing my drugs as the pseudomonas is now showing resistance to my colomycin. But unfortunately this time it could involve another ten day stay in hospital for this new treatment.
I have been taking this particular drug for five years so I guess that it's understandable that it has built up a resistance, but they have changed the make only about three months ago, so it is as good as the original? Is the government's bid to save money in the NHS meaning that they are swapping better makes with cheaper, less effective drugs?
I looked up the name of the new drug that Tracy mentioned on the Internet when I got home and if I have got the correct spelling... Amikican... then it is administered by injection or IV which would involved the hospital stay that Tracy mentioned. The word bugger springs to mind.
Is this karma for my flippant remarks I wonder?
Wait and see.
I do think that those words will be engraved on my tombstone!
Lots of love Debbie x
Monday, 27 June 2011
Please rain!
And after the high, comes the low. Only in this case it was the weather ganging up against me that made me low today. My goodness it was hot today.
The day started ok. I had to take my mother to see the nurse at lunchtime to have her dressing on her leg changed and it was about then that it all started going down hill for me with the heat.
Trying to get mother into the car and out again at the doctors, was a tad too much for me. I don't actually know how hot it was today, but what I do know it was extremely hot and humid and that combination isn't the best for me.
The sweat was dripping off me by the time I got into the doctors and even with my oxygen on... I was only registering 86% this morning... so I was a little on the labouring side while trying to walk.
I know mother wants to pretend everything is rosy in her world so no one mentions the word 'home,' but they needed to know the truth about how she is actually feeling, so we can get any treatment that can help her and keep her safe in her bungalow. But today I came across as the bossy daughter and I really didn't mean to.
Luckily the nurse was on the ball and checked mother's blood sugars, which were rather on the high side. I have to take her for a couple of blood tests at St Mike's on Wednesday and if she is diabetic, which the nurse thinks she could very well be, then that could be a factor in what's making her confused too and making her shaky.
By the time I got her home ad did a load of little chores for her, I was confused. Well not confused , but clumsy and suffering somewhat from the heat somewhat. I don't know whether it is the fact that my blood being thicker, makes it harder to cool down, but today was a nightmare.
At least I got her to chuck away her shoe from last week which was covered in her blood. She had already fished it out of the bin from when I threw it oout last week. Apparently she reckoned she was saving it to show my brother. I know what effect that would have on him and he would have hit the deck before I had counted to 5 as he hates the sight of blood, let alone a macabre souvenir of her cut leg!
When I got back to my bungalow, I had to keep indoors with all the windows and doors open to get a breeze through . This was annoying as my friend Irene had asked me around for a BBQ later on, but I actually felt tearful through the heat. Eventually I decided to go for a drive with the windows wide open so I could cool down that way.
I am hoping that the promised thunderstorms balance this humidity out a bit and I will feel more alive tomorrow, as the thought of having physio in this heat is far from a tempting offer.
Strange how only last year, I could handle 40 degrees in Cyprus with no real trouble, well as long as I was siting by a pool with an iced coffee in my hand!
I really must ask Julie if I can borrow her hoover to blow up the paddling pool that I had brought myself, because sitting in a kids pool at this very moment is a very enticing thought. If the neighbours think I've lost the plot, then so be it.
Lots of love Debbie x
The day started ok. I had to take my mother to see the nurse at lunchtime to have her dressing on her leg changed and it was about then that it all started going down hill for me with the heat.
Trying to get mother into the car and out again at the doctors, was a tad too much for me. I don't actually know how hot it was today, but what I do know it was extremely hot and humid and that combination isn't the best for me.
The sweat was dripping off me by the time I got into the doctors and even with my oxygen on... I was only registering 86% this morning... so I was a little on the labouring side while trying to walk.
I know mother wants to pretend everything is rosy in her world so no one mentions the word 'home,' but they needed to know the truth about how she is actually feeling, so we can get any treatment that can help her and keep her safe in her bungalow. But today I came across as the bossy daughter and I really didn't mean to.
Luckily the nurse was on the ball and checked mother's blood sugars, which were rather on the high side. I have to take her for a couple of blood tests at St Mike's on Wednesday and if she is diabetic, which the nurse thinks she could very well be, then that could be a factor in what's making her confused too and making her shaky.
By the time I got her home ad did a load of little chores for her, I was confused. Well not confused , but clumsy and suffering somewhat from the heat somewhat. I don't know whether it is the fact that my blood being thicker, makes it harder to cool down, but today was a nightmare.
At least I got her to chuck away her shoe from last week which was covered in her blood. She had already fished it out of the bin from when I threw it oout last week. Apparently she reckoned she was saving it to show my brother. I know what effect that would have on him and he would have hit the deck before I had counted to 5 as he hates the sight of blood, let alone a macabre souvenir of her cut leg!
When I got back to my bungalow, I had to keep indoors with all the windows and doors open to get a breeze through . This was annoying as my friend Irene had asked me around for a BBQ later on, but I actually felt tearful through the heat. Eventually I decided to go for a drive with the windows wide open so I could cool down that way.
I am hoping that the promised thunderstorms balance this humidity out a bit and I will feel more alive tomorrow, as the thought of having physio in this heat is far from a tempting offer.
Strange how only last year, I could handle 40 degrees in Cyprus with no real trouble, well as long as I was siting by a pool with an iced coffee in my hand!
I really must ask Julie if I can borrow her hoover to blow up the paddling pool that I had brought myself, because sitting in a kids pool at this very moment is a very enticing thought. If the neighbours think I've lost the plot, then so be it.
Lots of love Debbie x
Sunday, 26 June 2011
A Midsummer Glamp has began
Well with the help of my friends and family, I feel like I am back in the real world. What a lovely weekend I have had.
Friday night started totally different to last Friday as thankfully I was feeling so much better thanks to the course of antibiotics and more importantly, my boost in the form of the letter from Papworth and was really on a high as I drove us girlies off to see the 'Evening of Burlesque' at the Civic Theatre in Chelmsford.
I take my hat off to the way those ladies could swing their tassels! Julie who is the least bashful of us all, was the one who didn't know where to look at first and she thought I had brought her to a strip joint! But she soon settled into the show and admired all the glamorous 50's style costumes and the glitz of it all, realising it wasn't seedy at all.
Saturday morning Reni and myself went along to the 'Village Plan' in the park and sold books there in an effort to raise money for 'Stepping Stones' a charity based in London, but raises funds and awareness against child poverty and abuse in Nigeria and on the Nigerian children slave traffic to England.
It was really good to be doing something positive for others and being back helping in the community again. Before this disease took hold, I was always rushing about here or there attending something in the village community. That is what village life to me is all about, getting involved.
We sat in the park drinking tea, chatting to fellow stall holders and buyers alike and it gave me an amazing buzz, plus we made a profit, so bonus.
Last night I set off to Julie's Midsummer Glamp and it was hysterical. I was really nervous about going to be totally honest, but no need and I should have more faith. We sat in her garden which was full of tents in all various shapes and sizes, but all covered with fairy lights. We drank what seemed gallons of Pimms and Mohjitos. We ate a giant Chinese takeaway, probably the biggest order they had that evening and then changed into our pjs as the sun went down whilst wearing some rather scary face packs!
At one point with my henna tattoos on one hand... done that morning at the 'Village Plan' thanks to another fund raiser... and a Pimms in the other, sitting in the sun listening to 'Kings of Leon' etc, you would have been forgiven for thinking that I was at the Vfestival rather than in Julie's back garden! This was far more civilised, well until Lynn threw up, bless her.
I managed not to catch the Garden Jenga and bring it crashing down after the kids had built it up with my oxygen tubing which was looped around the garden and I looked like Miss Haversham dragging it behind me! And I stayed a safe distance away from the roaring fire, that Julie had borrowed from my garden and had lit once it started getting cooler.
Everyone settled down into their tents about 1am. But this was after lots of giggling from those being gassed by Tiff's windy habits in the six man tent and a bit of screaming from the little ones when Darren shook their tent after they were telling ghost stories to each other, and while Brenda and myself settled down in our comfortable beds in Julie's house, but with the windows open so we could hear Julie's renowned snoring.
The 1st Annual Midsummer Glamp at Julie's has been established.
This morning Julie cooked a full English breakfast for all of us before we all set off on our separate ways. She really should take on a B&B as she would be brilliant at it. My way was to make the most of the sudden sunshine and take mother to Maldon for a picnic.
I sat next to the car in my deckchair with my Panama hat on, eating cheese and pickle sandwiches, reading a book, thinking life doesn't get much better than this. Of course it could and if I'm lucky enough to get this transplant, then I can push mother up and down the prom in my wheelchair for her to enjoy everything too. Until then she is content the same as me to sit and watch the world go by.
Thank you to everyone that has made this weekend so special for me. And a big thank you to Julie.
Lots of love Debbie x
Friday night started totally different to last Friday as thankfully I was feeling so much better thanks to the course of antibiotics and more importantly, my boost in the form of the letter from Papworth and was really on a high as I drove us girlies off to see the 'Evening of Burlesque' at the Civic Theatre in Chelmsford.
I take my hat off to the way those ladies could swing their tassels! Julie who is the least bashful of us all, was the one who didn't know where to look at first and she thought I had brought her to a strip joint! But she soon settled into the show and admired all the glamorous 50's style costumes and the glitz of it all, realising it wasn't seedy at all.
Saturday morning Reni and myself went along to the 'Village Plan' in the park and sold books there in an effort to raise money for 'Stepping Stones' a charity based in London, but raises funds and awareness against child poverty and abuse in Nigeria and on the Nigerian children slave traffic to England.
It was really good to be doing something positive for others and being back helping in the community again. Before this disease took hold, I was always rushing about here or there attending something in the village community. That is what village life to me is all about, getting involved.
We sat in the park drinking tea, chatting to fellow stall holders and buyers alike and it gave me an amazing buzz, plus we made a profit, so bonus.
Last night I set off to Julie's Midsummer Glamp and it was hysterical. I was really nervous about going to be totally honest, but no need and I should have more faith. We sat in her garden which was full of tents in all various shapes and sizes, but all covered with fairy lights. We drank what seemed gallons of Pimms and Mohjitos. We ate a giant Chinese takeaway, probably the biggest order they had that evening and then changed into our pjs as the sun went down whilst wearing some rather scary face packs!
At one point with my henna tattoos on one hand... done that morning at the 'Village Plan' thanks to another fund raiser... and a Pimms in the other, sitting in the sun listening to 'Kings of Leon' etc, you would have been forgiven for thinking that I was at the Vfestival rather than in Julie's back garden! This was far more civilised, well until Lynn threw up, bless her.
I managed not to catch the Garden Jenga and bring it crashing down after the kids had built it up with my oxygen tubing which was looped around the garden and I looked like Miss Haversham dragging it behind me! And I stayed a safe distance away from the roaring fire, that Julie had borrowed from my garden and had lit once it started getting cooler.
Everyone settled down into their tents about 1am. But this was after lots of giggling from those being gassed by Tiff's windy habits in the six man tent and a bit of screaming from the little ones when Darren shook their tent after they were telling ghost stories to each other, and while Brenda and myself settled down in our comfortable beds in Julie's house, but with the windows open so we could hear Julie's renowned snoring.
The 1st Annual Midsummer Glamp at Julie's has been established.
This morning Julie cooked a full English breakfast for all of us before we all set off on our separate ways. She really should take on a B&B as she would be brilliant at it. My way was to make the most of the sudden sunshine and take mother to Maldon for a picnic.
I sat next to the car in my deckchair with my Panama hat on, eating cheese and pickle sandwiches, reading a book, thinking life doesn't get much better than this. Of course it could and if I'm lucky enough to get this transplant, then I can push mother up and down the prom in my wheelchair for her to enjoy everything too. Until then she is content the same as me to sit and watch the world go by.
Thank you to everyone that has made this weekend so special for me. And a big thank you to Julie.
Lots of love Debbie x
Friday, 24 June 2011
Whoop Whoop!
I'm writing my blog early today, as from having nothing to say yesterday to plenty to say today. I want to announce that I am no longer a lady in waiting... My letter from Papworth has come!
Whoop Whoop! Hoorah and Yay! I have been doing a little victory dance around my front room... Ok slight exaggeration, more of a punch the air a couple of times of dance. And then I burst into floods of tears!
Yep I am a big girl's blouse as they say.
I did go out last night to my friend's niece's boss's Jamie Oliver home ware party, but as it was up a flight of narrow stairs. To say that they got the better of me was an understatement and made me feel quite lightheaded and I was so knackered when I got home, that I really just wanted to sleep rather than blog I'm afraid. Besides I was still on a real low.
I went to sleep after having a serious chat with my guardian angels about 'sorry I was behaving like a spoilt brat etc and I know I have a lot to be thankful for etc' and I know a lot of you must be thinking I have totally lost the plot, but I think you have to believe in something and this is my choice.
Anyway I was reading a recipe when the post came and there in amongst a whole load of other post was my letter. Papworth 25th July 2.30pm for a primary assessment and discussion.
24th July, I will be praying like a good 'un to my angels about stopping myself from screwing it up by saying the wrong thing at the interview... perhaps I better leave my guardian angels watching over me out of the conversation for starters!
But I have to strike a careful balance between being ill enough to having it done, so I mustn't be too vain/bloody minded and I have to admit that at times i have to concede defeat. And then on the other hand being too ill to have it done and going on a day like anyone of the past few days where I've felt so grim that I could have easily thrown in the towel. I am worth the effort Papworth honestly.
I am on such a high at the moment. Julie couldn't believe how much difference just one letter could make to some one's spirits, but even getting this far is like winning the lottery. I know I have got a long journey in front of me now and there will be a lot of tears along the way. Plus there is no guarantee that I'm going to get a transplant at the end of it all, but this one letter has filled me with so much hope.
I'm going to going to watch a 'Burlesque Night' tonight and who knows, I may even join them on the stage!
Lots of love Debbie x
Whoop Whoop! Hoorah and Yay! I have been doing a little victory dance around my front room... Ok slight exaggeration, more of a punch the air a couple of times of dance. And then I burst into floods of tears!
Yep I am a big girl's blouse as they say.
I did go out last night to my friend's niece's boss's Jamie Oliver home ware party, but as it was up a flight of narrow stairs. To say that they got the better of me was an understatement and made me feel quite lightheaded and I was so knackered when I got home, that I really just wanted to sleep rather than blog I'm afraid. Besides I was still on a real low.
I went to sleep after having a serious chat with my guardian angels about 'sorry I was behaving like a spoilt brat etc and I know I have a lot to be thankful for etc' and I know a lot of you must be thinking I have totally lost the plot, but I think you have to believe in something and this is my choice.
Anyway I was reading a recipe when the post came and there in amongst a whole load of other post was my letter. Papworth 25th July 2.30pm for a primary assessment and discussion.
24th July, I will be praying like a good 'un to my angels about stopping myself from screwing it up by saying the wrong thing at the interview... perhaps I better leave my guardian angels watching over me out of the conversation for starters!
But I have to strike a careful balance between being ill enough to having it done, so I mustn't be too vain/bloody minded and I have to admit that at times i have to concede defeat. And then on the other hand being too ill to have it done and going on a day like anyone of the past few days where I've felt so grim that I could have easily thrown in the towel. I am worth the effort Papworth honestly.
I am on such a high at the moment. Julie couldn't believe how much difference just one letter could make to some one's spirits, but even getting this far is like winning the lottery. I know I have got a long journey in front of me now and there will be a lot of tears along the way. Plus there is no guarantee that I'm going to get a transplant at the end of it all, but this one letter has filled me with so much hope.
I'm going to going to watch a 'Burlesque Night' tonight and who knows, I may even join them on the stage!
Lots of love Debbie x
Wednesday, 22 June 2011
Answers on a postcard please
Quite a confusing day today. I really didn't have the appetite to do very much at all today, which isn't really me. The weather was pretty nondescript again and my confidence or self belief was at an all time low.
I find writing this blog helps me enormously as for one thing I can write my thoughts, fears and feelings down and not have to keep going through them all the time and bore my friends. Though I wouldn't be so big headed to think that all my friends even have time to bother with my blog, so some friends will get bored I'm afraid. But it gives me an avenue to get it out of my system, because if you have to keep repeating yourself about you're fed up about not hearing from Papworth etc, it actually can bring your mood crashing down and i am frightened of becoming he person that people jump in shop doorways to avoid.
Secondly if it helps someone else out there who suffers with bronchiectasis or another end stage lung disease, then something good has come out of this blog and maybe one day someone may send me a message giving me some good advice... hopefully not to give up blogging!
I went to Maldon to have my physio today and luckily it wasn't as hot in there than it usually is. Nothing worse than being beaten up and dying of heat at the same time. It's a long drive home with the headache that tends to follow that sort of exercise!
But the physio today was asking about my transplant progress and told me about their lung transplant success story in Maldon. I was all ears listening to this, trying to learn anything at all that could help my quest. I asked questions about his oxygen levels and how long did he have to wait etc? His case was different to mine I know, but he was roughly the same age as me and it took about six months from getting his pager to getting his new organs and best of all, within six weeks he was up and normal again.
This had a strange reaction on me, as when driving home instead of being hopeful, I became quite sad that this man had the chance at life again that I so craved and would I be so lucky? Would two people in the same region be able have a bite at the same cherry? Or would the powers that be say no because they have to spread the love?
Also when I enquired about the microbiologist's findings, she couldn't find anything about the fact that they were considering changing my drugs, so that was yet another thing that confused me.
When I got home I went to throw out the packet of these antibiotics, but not before reading the side effects list on these tablets again and lo and behold depression was pretty high ranking among them. I try not to take these details too much to heart when I start a course, as yes most new drugs give you an upset stomach or interrupts your sleep patterns. I worry that you could easily be going 'Ooo yes I have that' and looking for spots on your bum etc, but as I finish my course tomorrow then I thought there was no harm now in just giving it a thorough once over.
So it maybe the weather, it maybe the tablets or it just might be I'm fed up of going 'yeah bring it on' and that I'm fed up of waiting and seeing, which I find myself saying all the time to people. So I give myself permission to feel peeved off and moody. I have an exciting weekend ahead, but I deserve it because I'm worth it!
Lots of love Debbie x
I find writing this blog helps me enormously as for one thing I can write my thoughts, fears and feelings down and not have to keep going through them all the time and bore my friends. Though I wouldn't be so big headed to think that all my friends even have time to bother with my blog, so some friends will get bored I'm afraid. But it gives me an avenue to get it out of my system, because if you have to keep repeating yourself about you're fed up about not hearing from Papworth etc, it actually can bring your mood crashing down and i am frightened of becoming he person that people jump in shop doorways to avoid.
Secondly if it helps someone else out there who suffers with bronchiectasis or another end stage lung disease, then something good has come out of this blog and maybe one day someone may send me a message giving me some good advice... hopefully not to give up blogging!
I went to Maldon to have my physio today and luckily it wasn't as hot in there than it usually is. Nothing worse than being beaten up and dying of heat at the same time. It's a long drive home with the headache that tends to follow that sort of exercise!
But the physio today was asking about my transplant progress and told me about their lung transplant success story in Maldon. I was all ears listening to this, trying to learn anything at all that could help my quest. I asked questions about his oxygen levels and how long did he have to wait etc? His case was different to mine I know, but he was roughly the same age as me and it took about six months from getting his pager to getting his new organs and best of all, within six weeks he was up and normal again.
This had a strange reaction on me, as when driving home instead of being hopeful, I became quite sad that this man had the chance at life again that I so craved and would I be so lucky? Would two people in the same region be able have a bite at the same cherry? Or would the powers that be say no because they have to spread the love?
Also when I enquired about the microbiologist's findings, she couldn't find anything about the fact that they were considering changing my drugs, so that was yet another thing that confused me.
When I got home I went to throw out the packet of these antibiotics, but not before reading the side effects list on these tablets again and lo and behold depression was pretty high ranking among them. I try not to take these details too much to heart when I start a course, as yes most new drugs give you an upset stomach or interrupts your sleep patterns. I worry that you could easily be going 'Ooo yes I have that' and looking for spots on your bum etc, but as I finish my course tomorrow then I thought there was no harm now in just giving it a thorough once over.
So it maybe the weather, it maybe the tablets or it just might be I'm fed up of going 'yeah bring it on' and that I'm fed up of waiting and seeing, which I find myself saying all the time to people. So I give myself permission to feel peeved off and moody. I have an exciting weekend ahead, but I deserve it because I'm worth it!
Lots of love Debbie x
Tuesday, 21 June 2011
Snowballing
I've just been listening to my son's worries.
Having to deal with the inflated egos of various people and trying to sort snow balling problems out in a way that suited everyone. Of course he sorted it as that is what he does, but I worry that he takes on too much with the role of pacifier.
As a child he was such a worrier, but nowadays he would make a brilliant counsellor with his calm and rational thinking if he wanted to retrain. He makes you feel safe when he is around.
Sometimes when I have been moaning about this one or that one, he'll look at me and I hear him saying what I used to say to him when he was growing up many years ago before I was a bitter and twisted old lady.
'Would you want to be treated like that?'
How the tables have reversed as we grow older. My mother has become my child and I am fast becoming his.
He popped round tonight for a cup of coffee while he was waiting to pick up his lady wife from work and to check up on me.
I felt quite worn out from listening to what he has to do at times and yet he always has time for his dad and me.
'So mother what have you got up to today?' he asked and I told him of my snowballing problems that were in a different league to his.
I explained to him how I woke up yesterday to the silhouette of a spider on my bedroom curtain and thought that it was just a little one again that had been magnified by the sunlight behind it... wrong.
It was a big bugger that fell somewhere behind my medicine box after I accidentally killed it while trying to get it into my spider catcher.
I don't want to hurt them, but I can't have them in the same room as me I'm afraid.
When I went to bed late last night and went to close my curtains, there was an even bigger one on the same curtain as the belated spider, who was obviously related to it. Only this one had a bigger body which was ribbed. Probably from where it had stashed it's knives and equally scary things... gawd it was ugly.
Trying to sneak up on this beast while wearing oxygen has it's problems, mainly catching your tubes on my bedstead.
My brass and iron bed is lovely, but moving around it is like an assault course and the 15' oxygen tubing that I drag behind me isn't beneficial to stealth.
The long and the short of this fiasco was; I caught the spider, my tubing got caught on the bed post, I dropped the spider catcher, the spider made a run for it on my bed sheets, I somehow captured the escapee spider, but by now my nose and ears had been pulled very painfully by the short length of trapped tubing. I then had to yank the nose specs off before I lost the spider again and then dispose of it in the garden. My breathing by this point was pretty painful as I was panicking somewhat and had no oxygen flow going into my lungs, so I was panicking even more.
If I had my heart rate monitored then, I think I would have been in trouble.
By the time I had calmed down, some horrible nasty had flown into my bedroom and landed on the ceiling. I tried to climb on my bed and tried to catch it. Alas I couldn't and I gave up, only to wake up to find a bite on my leg!
Was it as bad as my son's snowball, I don't think so, but he gave me a huge cuddle and told me well done anyway!
Lots of love Debbie x
Having to deal with the inflated egos of various people and trying to sort snow balling problems out in a way that suited everyone. Of course he sorted it as that is what he does, but I worry that he takes on too much with the role of pacifier.
As a child he was such a worrier, but nowadays he would make a brilliant counsellor with his calm and rational thinking if he wanted to retrain. He makes you feel safe when he is around.
Sometimes when I have been moaning about this one or that one, he'll look at me and I hear him saying what I used to say to him when he was growing up many years ago before I was a bitter and twisted old lady.
'Would you want to be treated like that?'
How the tables have reversed as we grow older. My mother has become my child and I am fast becoming his.
He popped round tonight for a cup of coffee while he was waiting to pick up his lady wife from work and to check up on me.
I felt quite worn out from listening to what he has to do at times and yet he always has time for his dad and me.
'So mother what have you got up to today?' he asked and I told him of my snowballing problems that were in a different league to his.
I explained to him how I woke up yesterday to the silhouette of a spider on my bedroom curtain and thought that it was just a little one again that had been magnified by the sunlight behind it... wrong.
It was a big bugger that fell somewhere behind my medicine box after I accidentally killed it while trying to get it into my spider catcher.
I don't want to hurt them, but I can't have them in the same room as me I'm afraid.
When I went to bed late last night and went to close my curtains, there was an even bigger one on the same curtain as the belated spider, who was obviously related to it. Only this one had a bigger body which was ribbed. Probably from where it had stashed it's knives and equally scary things... gawd it was ugly.
Trying to sneak up on this beast while wearing oxygen has it's problems, mainly catching your tubes on my bedstead.
My brass and iron bed is lovely, but moving around it is like an assault course and the 15' oxygen tubing that I drag behind me isn't beneficial to stealth.
The long and the short of this fiasco was; I caught the spider, my tubing got caught on the bed post, I dropped the spider catcher, the spider made a run for it on my bed sheets, I somehow captured the escapee spider, but by now my nose and ears had been pulled very painfully by the short length of trapped tubing. I then had to yank the nose specs off before I lost the spider again and then dispose of it in the garden. My breathing by this point was pretty painful as I was panicking somewhat and had no oxygen flow going into my lungs, so I was panicking even more.
If I had my heart rate monitored then, I think I would have been in trouble.
By the time I had calmed down, some horrible nasty had flown into my bedroom and landed on the ceiling. I tried to climb on my bed and tried to catch it. Alas I couldn't and I gave up, only to wake up to find a bite on my leg!
Was it as bad as my son's snowball, I don't think so, but he gave me a huge cuddle and told me well done anyway!
Lots of love Debbie x
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