Following my last post i have been trying daily to add in at least 1 more physio session a day...the verdict is exhaustion!!
My sleep pattern is all over the place at the moment, i am again getting very little solid sleep, so i just doze throughout the day and night. Between sleeping im focusing my attention on Physio...I'm going to try and explain how it feels so excuse me if its just rambling on....
Most people are more likely suffered with a cold or flu instead of a full blown chest infection..so imagine the last cold you had, or watch the cold and flu remedy adverts. You will always see the peson with a red sore nose which they are trying to blow.
Do you remember that feeling of not getting any air through the nasal passage and getting more and more frustrated with each blow as it becomes harder, tenser, sorer through the pressure inside building?
Transfer these feeling to your lungs. You can feel they are full to the brim with gunk, you can feel it on your hand when you hold your chest. Its bubbling away gurgling against your hand almost like a baby kicking in the womb feels. As you breath in it sounds like you are blowing through a straw in to fluid, a loud bubbling sound.
At the end of the bubbling there is a crackle like the old sweet stardust popping on your tongue. I'm taking short sharp breaths as the air will not move past the mucus to the lower airways, I'm trying to pull some air in to my lungs as the force of air will rattle the mucus off the lungs lining making it easier to move.
Only its not moving i dont have enough strength to get a good enough flow of air so im only breathing in to the top part of my lungs so the mucus below it is just stuck solid.
The nebulisers im taking designed to thin the mucus aren't doing the job properly because i cant breath it deep enough in to the airways. I'm just coughing and coughing where my airways are inflamed and sore like the guys nose in the adverts.
My back and shoulders are tense and the muscles are aching. My stomach feels raw from the retching i cant be sick though as my stomach is empty iv not eaten anything yet.
Its so hard to do this over and over each day, and it feels there is no end in sight when your team are telling you they are full and have no bed for you, they cant even give a rough idea on how long the wait will be, will it be later today, tomorrow, next week, i dont know how long i can 'just cope'? im so tired after one session i sleep then food and exercise gets forgotten about. Its just a daily cycle until they get a bed.
I'm going out for dinner with my friend tonight so im going to stop physio now and have a sleep so i feel energized for dinner tonight, im very much looking forward to seeing Jennie and stuffing a steak down my mouth :D Lets just hope im not to breathless to eat again as im so hungry.....
Tuesday, 6 December 2011
Sunday, 4 December 2011
Exercise Exercise and a Little Learning ....
I went to sleep last night at 10.00pm. I woke up today at 12.45pm this afternoon....And i do meant slept!!!
Its not uncommon for me to be in bed for that many hours but to actually be asleep for that amount of time is shocking, im usually woken up 3-4 times a night by an angry chest, I'll wake up coughing, or in pain and twitch myself awake, or wheeze loudly or just to pee.
Each time i wake im usually up for a good half hour coughing and trying to get in a comfortable pain free position.
But last night i well and truly had a much deserved SLEEP!! Still exhausted from Fridays clinic followed by a restless nights sleep Friday, questions still filling my head i think my body was well and truly exhausted. I felt amazing for the sleep!!!
After the usual routine of morning medications, physio and a nice hot bath to soothe my muscles i met Clare in Starbucks for a lovely much needed caramel macchiatto, when id got there she had already ordered my drink and managed to get the comfy sofa :) She always manages to get it, she just stands over the people on it and they eventually leave, shes a sofa bully lol :) It was bloody freezing out so i got comfy with my legs tucked under me while i snuggled in to the heat of the coffee...Mmmm was yummy!!!
My lovely clarebear really cheered me up today and she probably doesn't even know it. We sat for hours in Starbucks discussing our health, how hers has come on leaps and bounds as she has doubled her lung function over the last 2 years through sheer hard work and determination.
She was my 'sick' friend for a long time, i was the one with great lung function with an active social life while she struggled day to day to do minor jobs just as i do now. We were laughing at the complete role reversal between us as she now has my lung function and i have hers.
It was fun reminiscing but a part of me felt sad for my past health, i felt like the girl i was 2 years ago was long gone and buried, like i would never have her smile, her zest for life, her social life, her bright eyes. I almost mourn her as i do feel sometimes i will never be her again and the ghost of my former self is slipping further and further from my memories.
As we were sitting there we spoke of clares blog which she has kept for 3 years now, i sat and read from the first one she ever wrote last night, to the current day. I cried and laughed throughout. It was horrible remembering how she was so ill, spending weeks in intensive care but it was the 'norm' for her and although every time she went there it was horrible to deal with, it was never a shock to me it was expected. I never expected her to be alive now, i prepared myself many times for her death but each time she managed to claw back some strength to fight.
I look at her today and she makes me so proud, i love this girl more than i can explain, she is my best friend, the kind of friend who knows me in and out she doesn't need to ask how i am she just knows, shes caring and is always there for me, shes like another sister to me..shes my hero and my inspiration....
Inspiration really being the key word, i watch her strength day to day and admire how she has turned her life around, she makes me feel i can do it to.
So as i sat mourning for the healthy girl i once was i almost started to mourn for the sick girl i am now, mourning in a good way because i know i have the strength to somehow try and make a better life for myself too.
I would love my lung function to stay at 48% which is what it normally is after iv's.
A lot of cardiovascular work will help the elasticity in my lungs which in turn will mean they are stronger so when infection does hit it may mean my lung function may drop to early 40S not 30's
I have never been afraid of admitting i am a complete gym-a-phobe!! i hate the gym with a passion so cardiovascular exercise is quite hard to do...i love to swim and i love yoga, i love going out on my bike (in the summer) and walking with my dogs so i need to find a way of getting my heart pumping more with the exercise i do enjoy, then maybe once my overall strength has improved i will tolerate the gym better. Its a small step towards the right path but i am positive.
In clinic Friday, as i said, i felt quite bullied. My Dr was saying she is happy with the way i respond to treatments in hospitals but worries at how quickly i decline at home.
At first i felt she was questioning my compliance which upset me so much as a few years ago i was very neglectful with my treatments and was very honest with my team about that fact, but my lungs were in better condition then and infections wouldn't affect me as much as they do now.
As most of you know cf is a degenerative condition, meaning that over time your lungs will inevitably get worse resulting in lung transplantation. You can never stop that process as it is the nature of cf and cf is incurable. However there are ways to slow the decline. Exercise and compliance with all treatments being just 2 of those factors.
So as i can honestly say my compliance is nigh on 99% of the time i feel that exercise and a more structured daily physio therapy plan is the only way for me to go now if im to avoid a transplant in the next few years.
Now for a little CF lesson.....
Getting sputum off of my lungs is so important, as my lungs and airways do not shift mucus naturally from the airways. This is due to an imbalance in the bodies natural salt and sodium movements.
The mucus gets trapped in the airways allowing a perfect breeding ground for them germs to feed and bread.
So basically if the sputum in the lungs is moved out and along the airways to the mouth where it is swallowed or coughed out the less there is for the bugs to breed on.
In a 'normal' or healthy body this happens effortlessly and mucus is moved perfectly from the lungs by the CILIA (small hairs that move in a wafting like motion inside the lungs and airways) in to the mouth where it is then swallowed without you noticing.
This process in cf does not work hence the build up of mucus in the lungs resulting in infections, which in tern create scar tissue which is concrete like.
Once it reaches this stage it is irreversible. Lung function will drop and the lungs shut down where the scarring is making the lungs smaller and smaller...so you can see why clearance of the chest is so important.
Anti biotics kill a lot of the bugs but alone will not work and has to work hand in hand with clearing mucus to be most effective.
As i am on maximum doses of the drugs i take, i know the only thing that will help me now is more physio to clear my chest.
This responsability falls down solely to me. I can get support and advise from my team on how best to do this but really it is only me that can do it.... so i know this is where i need to focus my attention now.
When i am admitted next week i am sure to spend enough time with the physios to help me with a structured but manageable plan for me to continue at home.
The physio regime you have in hospital is not realistic at home, as you do not have all day to do 3-4 sessions a day.
Physio and exercise in the hospitals gym is the thing that works amazingly well for me in hospital, so i know it is the thing lacking at home which is resulting in such fast declines.
Proving that medication alone is not enough.
Its the thing i need to work on most.
I have faith in my physiotherapy team and know we can come up with something viable once home.
I'm willing to try anything to help get me back to the girl of 2 years ago..i miss her!!
Its not uncommon for me to be in bed for that many hours but to actually be asleep for that amount of time is shocking, im usually woken up 3-4 times a night by an angry chest, I'll wake up coughing, or in pain and twitch myself awake, or wheeze loudly or just to pee.
Each time i wake im usually up for a good half hour coughing and trying to get in a comfortable pain free position.
But last night i well and truly had a much deserved SLEEP!! Still exhausted from Fridays clinic followed by a restless nights sleep Friday, questions still filling my head i think my body was well and truly exhausted. I felt amazing for the sleep!!!
After the usual routine of morning medications, physio and a nice hot bath to soothe my muscles i met Clare in Starbucks for a lovely much needed caramel macchiatto, when id got there she had already ordered my drink and managed to get the comfy sofa :) She always manages to get it, she just stands over the people on it and they eventually leave, shes a sofa bully lol :) It was bloody freezing out so i got comfy with my legs tucked under me while i snuggled in to the heat of the coffee...Mmmm was yummy!!!
My lovely clarebear really cheered me up today and she probably doesn't even know it. We sat for hours in Starbucks discussing our health, how hers has come on leaps and bounds as she has doubled her lung function over the last 2 years through sheer hard work and determination.
She was my 'sick' friend for a long time, i was the one with great lung function with an active social life while she struggled day to day to do minor jobs just as i do now. We were laughing at the complete role reversal between us as she now has my lung function and i have hers.
It was fun reminiscing but a part of me felt sad for my past health, i felt like the girl i was 2 years ago was long gone and buried, like i would never have her smile, her zest for life, her social life, her bright eyes. I almost mourn her as i do feel sometimes i will never be her again and the ghost of my former self is slipping further and further from my memories.
As we were sitting there we spoke of clares blog which she has kept for 3 years now, i sat and read from the first one she ever wrote last night, to the current day. I cried and laughed throughout. It was horrible remembering how she was so ill, spending weeks in intensive care but it was the 'norm' for her and although every time she went there it was horrible to deal with, it was never a shock to me it was expected. I never expected her to be alive now, i prepared myself many times for her death but each time she managed to claw back some strength to fight.
I look at her today and she makes me so proud, i love this girl more than i can explain, she is my best friend, the kind of friend who knows me in and out she doesn't need to ask how i am she just knows, shes caring and is always there for me, shes like another sister to me..shes my hero and my inspiration....
Inspiration really being the key word, i watch her strength day to day and admire how she has turned her life around, she makes me feel i can do it to.
So as i sat mourning for the healthy girl i once was i almost started to mourn for the sick girl i am now, mourning in a good way because i know i have the strength to somehow try and make a better life for myself too.
I would love my lung function to stay at 48% which is what it normally is after iv's.
A lot of cardiovascular work will help the elasticity in my lungs which in turn will mean they are stronger so when infection does hit it may mean my lung function may drop to early 40S not 30's
I have never been afraid of admitting i am a complete gym-a-phobe!! i hate the gym with a passion so cardiovascular exercise is quite hard to do...i love to swim and i love yoga, i love going out on my bike (in the summer) and walking with my dogs so i need to find a way of getting my heart pumping more with the exercise i do enjoy, then maybe once my overall strength has improved i will tolerate the gym better. Its a small step towards the right path but i am positive.
In clinic Friday, as i said, i felt quite bullied. My Dr was saying she is happy with the way i respond to treatments in hospitals but worries at how quickly i decline at home.
At first i felt she was questioning my compliance which upset me so much as a few years ago i was very neglectful with my treatments and was very honest with my team about that fact, but my lungs were in better condition then and infections wouldn't affect me as much as they do now.
As most of you know cf is a degenerative condition, meaning that over time your lungs will inevitably get worse resulting in lung transplantation. You can never stop that process as it is the nature of cf and cf is incurable. However there are ways to slow the decline. Exercise and compliance with all treatments being just 2 of those factors.
So as i can honestly say my compliance is nigh on 99% of the time i feel that exercise and a more structured daily physio therapy plan is the only way for me to go now if im to avoid a transplant in the next few years.
Now for a little CF lesson.....
Getting sputum off of my lungs is so important, as my lungs and airways do not shift mucus naturally from the airways. This is due to an imbalance in the bodies natural salt and sodium movements.
The mucus gets trapped in the airways allowing a perfect breeding ground for them germs to feed and bread.
So basically if the sputum in the lungs is moved out and along the airways to the mouth where it is swallowed or coughed out the less there is for the bugs to breed on.
In a 'normal' or healthy body this happens effortlessly and mucus is moved perfectly from the lungs by the CILIA (small hairs that move in a wafting like motion inside the lungs and airways) in to the mouth where it is then swallowed without you noticing.
This process in cf does not work hence the build up of mucus in the lungs resulting in infections, which in tern create scar tissue which is concrete like.
Once it reaches this stage it is irreversible. Lung function will drop and the lungs shut down where the scarring is making the lungs smaller and smaller...so you can see why clearance of the chest is so important.
Anti biotics kill a lot of the bugs but alone will not work and has to work hand in hand with clearing mucus to be most effective.
As i am on maximum doses of the drugs i take, i know the only thing that will help me now is more physio to clear my chest.
This responsability falls down solely to me. I can get support and advise from my team on how best to do this but really it is only me that can do it.... so i know this is where i need to focus my attention now.
When i am admitted next week i am sure to spend enough time with the physios to help me with a structured but manageable plan for me to continue at home.
The physio regime you have in hospital is not realistic at home, as you do not have all day to do 3-4 sessions a day.
Physio and exercise in the hospitals gym is the thing that works amazingly well for me in hospital, so i know it is the thing lacking at home which is resulting in such fast declines.
Proving that medication alone is not enough.
Its the thing i need to work on most.
I have faith in my physiotherapy team and know we can come up with something viable once home.
I'm willing to try anything to help get me back to the girl of 2 years ago..i miss her!!
Saturday, 3 December 2011
Clinic...
So as you know i met with my team at the LCH (London Chest Hospital) yesterday, it was probably one of the longest days i have had in weeks...physically and mentally draining and tiring!!
First one of the team i saw was sajel, the psychologist, over the years i have built up a very strong relationship with sajel. I trust and rely on her very much she really is a lovely person to be able to talk to. She simply asked me how things were, i said not to good and instantly burst in to tears, i was so overcome with emotion at having to now talk about and deal with my fears with somebody, i spoke about my growing concern for my health.
Keith the pharmacist was also sitting in on our session. He works extremely closely with sajel and patients to help find ways to make treatments easier even if it is suggesting a different form of medication if you struggle with taking it. They are there to help with everything you need even if it is just that you dont like the taste of a certain medicine, they will offer an alternative where possible to help you adhere to the medication regime.
We discussed the steroid based inhalers i was on and made a few changes that he thinks will help me. After speaking with Keith and sajel for half an hour i felt like a bit of the burden had been lifted already.
Next to see me was Charlotte the physio, i expressed to her the difficulty in clearing my chest and she tried to help me with more physiotherapy options and how best to keep my energy levels high enough to be able to do a good 2-3 sessions of physio a day, however we didn't hold out much hope of my energy levels improving why this infection is lurking.
She is going to speak to a colleague who specializes in extreme fatigue to see if they have anything that may help me.
Whilst talking to Charlotte i couldn't stop looking at the lung function machine she had wheeled in with her, i was dreading doing it a part of me just didn't want to know the results but i knew it had to be done...36% Absolute crap!!!! She took a sputum sample and next up to see me was the SHO (Senior house officer)....
Well the meet with her didn't go to well at all. When she came in she first remarked on how tired and drained i looked, i simply said i was! the day had already been long, crying with sajel and coughing so hard from lung function with Charlotte i was about ready for my bed, i felt deliriously tired i couldn't think straight and find answers for what she was asking me.
She was firing so many questions at me so quickly, not giving me a chance to answer between questions then was left feeling confused when i tried to answer the 1st question why remembering the rest, she was slurping away on a can of lilt which i found so annoying, i dont know why?! i was just irritable and the sound of her slurps was doing my head in.
Trying to find answers to her questions, questions like, so how do you know when your ill? what tests do you do? do you know you have deteriorated? why are you so tired? this isn't normal, do you feel normal? spilling out of her mouth at 100x an hour was making me feel like i was on question time and there was a clock ticking and i had to answer them as quick as i could before she moved on to something else, my head felt fuzzy by this point.
She was then basically saying i needed to go in to hospital and it needed to be soon but until they had a bed then i had to do home ivs 3x a day, i tried to explain to her that i was just to exhausted to take on the extra burden of more treatments when i felt poorly. She couldn't understand why i couldn't do it and proceeded to tell me that the drop in my lung function, and the way i appeared at clinic was worrying...so how did she expect me to be drawing up and injecting up to 20 syringe fulls of medication a day?!!
I felt bullied by her, like i wasn't willing to help myself and that i was being a pain, again i tried to explain to her that i COULD NOT do this without the support from the team at home on my own but she wasn't grasping what i was saying and felt she was getting more and more annoyed with me, i cracked and started to cry and started shouting saying to her 'you are telling me how ill i look and present, you are telling me my lung function is a worry, you are telling me how exhausted i am needs help,... but you are telling me, not asking me to take on more medication that will exhaust me more, that i was in need of rest and support. She left the room in quite a huff and come back a few minutes later with my consultant and the cf nurse specialist mark. They agreed i wasn't well enough to do ivs myself but were adamant i needed them before Christmas but as it was the weekend they could not get me a bed so admission is now planned for next week.
SHO's move around from hospital to hospital, unit to unit for years until they decide what field of medicine they want to specialize and become a registrar in, so they only get a short time in one area of medicine and with the patients. I felt yesterday the SHO who saw me did not understand cf to well, maybe she didn't understand how tiring it can get and how often patients get ill and rely on their team. I truly felt bullied and belittled by her.
I'm sorry i shouted at her and got upset on the way home about it but i felt i had to get my point across to her to make her understand i wasn't being difficult i just couldn't cope!!
It can take years to build a rep-or with your team and they really do get to know you, they know how you are feeling and what you are capable of dong by just looking at you, im glad Dr Watson and mark did come in to see me as i was getting more and more frustrated.
So the plan for now i manage at home over the weekend to hopefully have a bed Monday where i will be admitted for IV (Intravenous anti-biotics) an Aminophylline infusion, which will help to dilate my airways. I will have overnight feeding and fluids to improve my weight and nutrition, a CT scan on my lungs is planned as it gives better images than a standard x-ray and a Broncoscopy ( A camera tube in to the lungs to get a better look at the damage inside the lung) may follow depending on the results of the CT.
So im hopefull things will improve... hopefully just before the new year so i can start the new year with a fresh bill of health and do the things i have planned
First one of the team i saw was sajel, the psychologist, over the years i have built up a very strong relationship with sajel. I trust and rely on her very much she really is a lovely person to be able to talk to. She simply asked me how things were, i said not to good and instantly burst in to tears, i was so overcome with emotion at having to now talk about and deal with my fears with somebody, i spoke about my growing concern for my health.
Keith the pharmacist was also sitting in on our session. He works extremely closely with sajel and patients to help find ways to make treatments easier even if it is suggesting a different form of medication if you struggle with taking it. They are there to help with everything you need even if it is just that you dont like the taste of a certain medicine, they will offer an alternative where possible to help you adhere to the medication regime.
We discussed the steroid based inhalers i was on and made a few changes that he thinks will help me. After speaking with Keith and sajel for half an hour i felt like a bit of the burden had been lifted already.
Next to see me was Charlotte the physio, i expressed to her the difficulty in clearing my chest and she tried to help me with more physiotherapy options and how best to keep my energy levels high enough to be able to do a good 2-3 sessions of physio a day, however we didn't hold out much hope of my energy levels improving why this infection is lurking.
She is going to speak to a colleague who specializes in extreme fatigue to see if they have anything that may help me.
Whilst talking to Charlotte i couldn't stop looking at the lung function machine she had wheeled in with her, i was dreading doing it a part of me just didn't want to know the results but i knew it had to be done...36% Absolute crap!!!! She took a sputum sample and next up to see me was the SHO (Senior house officer)....
Well the meet with her didn't go to well at all. When she came in she first remarked on how tired and drained i looked, i simply said i was! the day had already been long, crying with sajel and coughing so hard from lung function with Charlotte i was about ready for my bed, i felt deliriously tired i couldn't think straight and find answers for what she was asking me.
She was firing so many questions at me so quickly, not giving me a chance to answer between questions then was left feeling confused when i tried to answer the 1st question why remembering the rest, she was slurping away on a can of lilt which i found so annoying, i dont know why?! i was just irritable and the sound of her slurps was doing my head in.
Trying to find answers to her questions, questions like, so how do you know when your ill? what tests do you do? do you know you have deteriorated? why are you so tired? this isn't normal, do you feel normal? spilling out of her mouth at 100x an hour was making me feel like i was on question time and there was a clock ticking and i had to answer them as quick as i could before she moved on to something else, my head felt fuzzy by this point.
She was then basically saying i needed to go in to hospital and it needed to be soon but until they had a bed then i had to do home ivs 3x a day, i tried to explain to her that i was just to exhausted to take on the extra burden of more treatments when i felt poorly. She couldn't understand why i couldn't do it and proceeded to tell me that the drop in my lung function, and the way i appeared at clinic was worrying...so how did she expect me to be drawing up and injecting up to 20 syringe fulls of medication a day?!!
I felt bullied by her, like i wasn't willing to help myself and that i was being a pain, again i tried to explain to her that i COULD NOT do this without the support from the team at home on my own but she wasn't grasping what i was saying and felt she was getting more and more annoyed with me, i cracked and started to cry and started shouting saying to her 'you are telling me how ill i look and present, you are telling me my lung function is a worry, you are telling me how exhausted i am needs help,... but you are telling me, not asking me to take on more medication that will exhaust me more, that i was in need of rest and support. She left the room in quite a huff and come back a few minutes later with my consultant and the cf nurse specialist mark. They agreed i wasn't well enough to do ivs myself but were adamant i needed them before Christmas but as it was the weekend they could not get me a bed so admission is now planned for next week.
SHO's move around from hospital to hospital, unit to unit for years until they decide what field of medicine they want to specialize and become a registrar in, so they only get a short time in one area of medicine and with the patients. I felt yesterday the SHO who saw me did not understand cf to well, maybe she didn't understand how tiring it can get and how often patients get ill and rely on their team. I truly felt bullied and belittled by her.
I'm sorry i shouted at her and got upset on the way home about it but i felt i had to get my point across to her to make her understand i wasn't being difficult i just couldn't cope!!
It can take years to build a rep-or with your team and they really do get to know you, they know how you are feeling and what you are capable of dong by just looking at you, im glad Dr Watson and mark did come in to see me as i was getting more and more frustrated.
So the plan for now i manage at home over the weekend to hopefully have a bed Monday where i will be admitted for IV (Intravenous anti-biotics) an Aminophylline infusion, which will help to dilate my airways. I will have overnight feeding and fluids to improve my weight and nutrition, a CT scan on my lungs is planned as it gives better images than a standard x-ray and a Broncoscopy ( A camera tube in to the lungs to get a better look at the damage inside the lung) may follow depending on the results of the CT.
So im hopefull things will improve... hopefully just before the new year so i can start the new year with a fresh bill of health and do the things i have planned
Wednesday, 30 November 2011
Faceless?
I'm not to sure what to write here today, i dont want every post to be depressing but im finding it hard not to be depressed, so maybe just an update for today while waiting for my spirits to pick up....
First of all i want to say a huge congratulations to kirstie and stu on the success of their documentary on bbc. Thanks to all of my friends that watched and an even bigger thanks to the 7 that signed the register that night :) We have had calls off of our friends and family saying they had no idea what cf entailed and i know kirsties aim was to raise awareness so i know how pleased she must be with the outcome.
After posting my last blog i received a lovely message from my good friend, we'll call her tracey for now as to not embarrass her. I wont go in to too much detail at what she said as it was quite personell but it was lovely to hear that she was starting to understand cf and how lonely it could be for me, knowing that my friends are willing to offer there time and support when they know i need it is so nice, it does take the loneliness away.
I feel since i have decided to put my life out in the open i will be more accepted for me, friends and family will understand if i let them down last minute and know its nothing personnel. I would always worry people would think of me as a let down or not a good friend for missing events, i am (believe it or not) quite a shy insecure person always worry what people think of me, i guess this steamed from being bullied at school, made to feel my cf was something to be ashamed of, something that made me different in a bad way, like i wasn't good enough to be friends with.
I have never in all the years since leaving that school and those people got over the fact that my cf made my life hell, or the fact they made it hell because of my cf. They will never know that their words of negativity have made such an impact on my life, how the cruel words that were spoken in such haste have made me the way i am today, shy embarrest, ashamed, hiding away from the world in the times of most need, making the loneliness and solitude worse for myself through fear of the repercussions of being 'the sick one'
Some people may wonder why im doing this blog for all to see, am i attention seeking? wanting a sympathy vote? Well the answer is no...
My main aim is to raise awareness of cf so that people can understand its evil as they do if it was a cancer, and to help save lives by signing the donor register.
But secondly for myself...
To stick 2 fingers up at the people that wished me dead, said i was a waste of oxygen, said id be doing a lot of people a favor if i just gave up....You nearly killed me, i did give up, but the strength i had eventually pulled me through, and your words of cruelness has made me who i am today...stronger than you will ever be, my life may not be as active as yours but i know im doing what i can, so if i am out in a wheelchair one day i will no longer feel like being invisible, wanting to be faceless, not to be recognised but being proud that i am still alive......
First of all i want to say a huge congratulations to kirstie and stu on the success of their documentary on bbc. Thanks to all of my friends that watched and an even bigger thanks to the 7 that signed the register that night :) We have had calls off of our friends and family saying they had no idea what cf entailed and i know kirsties aim was to raise awareness so i know how pleased she must be with the outcome.
After posting my last blog i received a lovely message from my good friend, we'll call her tracey for now as to not embarrass her. I wont go in to too much detail at what she said as it was quite personell but it was lovely to hear that she was starting to understand cf and how lonely it could be for me, knowing that my friends are willing to offer there time and support when they know i need it is so nice, it does take the loneliness away.
I feel since i have decided to put my life out in the open i will be more accepted for me, friends and family will understand if i let them down last minute and know its nothing personnel. I would always worry people would think of me as a let down or not a good friend for missing events, i am (believe it or not) quite a shy insecure person always worry what people think of me, i guess this steamed from being bullied at school, made to feel my cf was something to be ashamed of, something that made me different in a bad way, like i wasn't good enough to be friends with.
I have never in all the years since leaving that school and those people got over the fact that my cf made my life hell, or the fact they made it hell because of my cf. They will never know that their words of negativity have made such an impact on my life, how the cruel words that were spoken in such haste have made me the way i am today, shy embarrest, ashamed, hiding away from the world in the times of most need, making the loneliness and solitude worse for myself through fear of the repercussions of being 'the sick one'
Some people may wonder why im doing this blog for all to see, am i attention seeking? wanting a sympathy vote? Well the answer is no...
My main aim is to raise awareness of cf so that people can understand its evil as they do if it was a cancer, and to help save lives by signing the donor register.
But secondly for myself...
To stick 2 fingers up at the people that wished me dead, said i was a waste of oxygen, said id be doing a lot of people a favor if i just gave up....You nearly killed me, i did give up, but the strength i had eventually pulled me through, and your words of cruelness has made me who i am today...stronger than you will ever be, my life may not be as active as yours but i know im doing what i can, so if i am out in a wheelchair one day i will no longer feel like being invisible, wanting to be faceless, not to be recognised but being proud that i am still alive......
Monday, 28 November 2011
Mind Set......Go?
My mum, for as many years as i can remember has said to me .....
'Kerry, you have to keep your mind strong, if your mind fails your body will follow'...
So these past few scary days, and i do mean scary days i have really been thinking hard about mums old saying!
Ok so does this mean if my mind is strong my body will always be? defeat cf? defeat the inevitable? defeat history and drs predictions? ..or does it mean switch my mind of to cf completely? be oblivious to it? can the mind do that? is my mind making me ill? ..well these are the questions i have been battling the last few days why my body is slowly shutting off. I wondered am i shutting it off with my mind?..The Answer quite simply was yes!!
Ok, obviously im not imagining my symptoms, my illness, the pain, the fear, the medication, the sickness, the tightness....however i was VERY willing to lay down and let it take me without fighting, i felt to weak to fight..its a battle i am never going to win. But again another saying of ol dear mum popped in to my head
'If you fight, you fight to the death, and you don't go down without a damm good fight'....A damm good fight ran loud in my ears? A good fight? This is not a good fight, its beating me and im happy to let it, im happy to lay here and let it beat me, what would my legacy be?...she gave up, she let it happen? SHE WAS WEAK!! She dissapointed us and herself? ..
Or could i muster some strength from somewhere gain some control and put cf back where it belonged, a small part of me or 'ALL' of me?
Well obviously my mind can not heal me but it can help to a certain extent, along with the right mixture of medication to get me through. So here is the part where i tell you im putting my foot down with my team, i will no longer be fobbed off saying im on all the medication that is right for me, im clearly not if this is my daily life, just 4 days of nebulisers i have been taking from Clare has opened my lungs up beautifully so much so i can wake up in the morning and roll over, sit up, breathe! I dont have the paralyzed feeling that my chest is keeping me pinned to the bed under the pressure of the shit that's stored down there that the tight airways wont allow to move past, i feel lighter. Lighter in chest, body and mind!!
As a keen girl of yoga and the Buddhist practice of 'mindfulness' i kind of feel empowered this morning, like my mind is ready for this fight, its almost wanting the fight just to prove it can win, that the weakness was a temporary disability and not to be taken advantage of!
Thats sometimes what i see cf as, this thing in my body that tries to eat away at me, like a demon making its way through my lungs, uninvited and taking advantage!
Surely its only me that can stop it in its tracks? (well me and the right medication)
I am meeting with my team Friday.
Me and the fight that has returned in my mind will tackle this demon, i will not leave that hospital until i feel the treatment plan im on will be as strong and as good as it can be...
My mind is set...so lets go
'Kerry, you have to keep your mind strong, if your mind fails your body will follow'...
So these past few scary days, and i do mean scary days i have really been thinking hard about mums old saying!
Ok so does this mean if my mind is strong my body will always be? defeat cf? defeat the inevitable? defeat history and drs predictions? ..or does it mean switch my mind of to cf completely? be oblivious to it? can the mind do that? is my mind making me ill? ..well these are the questions i have been battling the last few days why my body is slowly shutting off. I wondered am i shutting it off with my mind?..The Answer quite simply was yes!!
Ok, obviously im not imagining my symptoms, my illness, the pain, the fear, the medication, the sickness, the tightness....however i was VERY willing to lay down and let it take me without fighting, i felt to weak to fight..its a battle i am never going to win. But again another saying of ol dear mum popped in to my head
'If you fight, you fight to the death, and you don't go down without a damm good fight'....A damm good fight ran loud in my ears? A good fight? This is not a good fight, its beating me and im happy to let it, im happy to lay here and let it beat me, what would my legacy be?...she gave up, she let it happen? SHE WAS WEAK!! She dissapointed us and herself? ..
Or could i muster some strength from somewhere gain some control and put cf back where it belonged, a small part of me or 'ALL' of me?
Well obviously my mind can not heal me but it can help to a certain extent, along with the right mixture of medication to get me through. So here is the part where i tell you im putting my foot down with my team, i will no longer be fobbed off saying im on all the medication that is right for me, im clearly not if this is my daily life, just 4 days of nebulisers i have been taking from Clare has opened my lungs up beautifully so much so i can wake up in the morning and roll over, sit up, breathe! I dont have the paralyzed feeling that my chest is keeping me pinned to the bed under the pressure of the shit that's stored down there that the tight airways wont allow to move past, i feel lighter. Lighter in chest, body and mind!!
As a keen girl of yoga and the Buddhist practice of 'mindfulness' i kind of feel empowered this morning, like my mind is ready for this fight, its almost wanting the fight just to prove it can win, that the weakness was a temporary disability and not to be taken advantage of!
Thats sometimes what i see cf as, this thing in my body that tries to eat away at me, like a demon making its way through my lungs, uninvited and taking advantage!
Surely its only me that can stop it in its tracks? (well me and the right medication)
I am meeting with my team Friday.
Me and the fight that has returned in my mind will tackle this demon, i will not leave that hospital until i feel the treatment plan im on will be as strong and as good as it can be...
My mind is set...so lets go
Friday, 25 November 2011
Fear
I Thought i would blog today as i am just sat here with lots of things going through my head so thought it would be nice to write them down to hopefully clear my head a bit....
Today and the last few days have been terrible health wise, my chest is so so tight and i feel i am suffocating in sputum.
Today it really did reach a really horrible scary stage, i was woken up by crippling pain shooting through my lungs, it felt as if i was being sliced slowly through the length of each rib, it was causing sharp shooting pains and causing me to make sounds i wasn't even aware i was doing until they were coming out my mouth, a kind of deep groaning sound mixed with high pitched squeals.
I grabbed my inhalers but couldn't get enough air in my lungs to even inhale the medication, i decided to instead have a nebuliser of mucoclear to try and shift the sputum but it was making my airways tighter and the cough was unbearable with the pain.
I was panicking and started hyperventilating through pure panic, it was scary, i started to feel dizzy and sick. I then tried to have some heated saline through my nebuliser to try and sooth the airways but again it made no improvement, more panic was setting in the cough wouldn't stop and i was in so much pain.I text my friend Clare and said i wouldn't be able to meet her in Starbucks, she seemed quite worried about me as 20 minutes later she turned up with more medication for me, she has asthma so knows the signs of restricted airways more than anybody. She gave me atrovent and salbutamol nebs which eased my breathing after about 20 minutes, i started to calm down and feel more settled so i could get air in now, my heart raced at 140 beats per minute but this was mainly a side effect of the inhaled drugs, they also left me very shaky which again is a very common side affect, just slightly uncomfortable.
My limbs have felt really heavy all day, they felt alien to me like i wasn't in control of them like there was a lead weight in them and i couldn't lift them, once i was breathing better and after a hefty dose of steroids, 60mg i dosed off to sleep.
I didn't know but in the 2 hours i was asleep Clare had left to go to the chemist to get me a new blood glucose monitor, i had lost mine a few weeks back and never got round to replacing it, naughty i know!!! ..steroids are known to make blood sugars high so she was determined to keep an eye on my sugars beings as i doubled my usual 30mg dose of steroid.
I normally would never have taken drugs not prescribed to me through fear of side effects but i was desperate, i was so scared, i could feel my lungs shutting off as my airways were tightening, the panic had set in and i would have taken anything to stop the pain, the breathlessness and the fear.So anyway when she got back from town she tested my sugars they were reasonable at 7.3 but slightly high as id not eaten a thing all day, my chest felt more settled by now so i had enough breath to think about food so Clare left me with nebulisers to keep me going over the weekend but i think a call to my team is in order Monday as they refuse to believe i have asthmatic symptoms..well today proves i do especially as i responded so well to the medication from Clare, much more response than to heated saline which is what they have given me.
I dont want other mornings to be like this morning, it is completely life limiting, i can never keep plan with friends, the shortness of breath and the pain is debilitating and after the many hours it takes to get my chest to a reasonable standard im far to exhausted to go and bath let alone go out have fun and feel fulfilled daily.
I feel my life switches between pain, medication, extreme fatigue and tiredness then eventually sleep.
I'm a prisoner in my own bedroom even downstairs is off limits as coming back upstairs is more effort than its worth as it takes me 20 mins to recover from the exertion of the stair climb.Im fully compliant with all my medication yet im in this state more often than not, I'm just declining day by day.
My age scares me as in the CF world i am old, average life expectancy is around 30 most people at 24 have had a transplant already or worse yet passed away, i know i must be doing reasonably well as im not even listed for transplant yet but i feel that is coming.
I'm finding it hard to stay positive but i know i have too, because if i dont whats the alternative...death? Death scares me but somehow i feel it looming somewhere in the background and it scares me to my very core.
I can not give up this fight just yet i need to find the strength from somewhere.....somehow
Today and the last few days have been terrible health wise, my chest is so so tight and i feel i am suffocating in sputum.
Today it really did reach a really horrible scary stage, i was woken up by crippling pain shooting through my lungs, it felt as if i was being sliced slowly through the length of each rib, it was causing sharp shooting pains and causing me to make sounds i wasn't even aware i was doing until they were coming out my mouth, a kind of deep groaning sound mixed with high pitched squeals.
I grabbed my inhalers but couldn't get enough air in my lungs to even inhale the medication, i decided to instead have a nebuliser of mucoclear to try and shift the sputum but it was making my airways tighter and the cough was unbearable with the pain.
I was panicking and started hyperventilating through pure panic, it was scary, i started to feel dizzy and sick. I then tried to have some heated saline through my nebuliser to try and sooth the airways but again it made no improvement, more panic was setting in the cough wouldn't stop and i was in so much pain.I text my friend Clare and said i wouldn't be able to meet her in Starbucks, she seemed quite worried about me as 20 minutes later she turned up with more medication for me, she has asthma so knows the signs of restricted airways more than anybody. She gave me atrovent and salbutamol nebs which eased my breathing after about 20 minutes, i started to calm down and feel more settled so i could get air in now, my heart raced at 140 beats per minute but this was mainly a side effect of the inhaled drugs, they also left me very shaky which again is a very common side affect, just slightly uncomfortable.
My limbs have felt really heavy all day, they felt alien to me like i wasn't in control of them like there was a lead weight in them and i couldn't lift them, once i was breathing better and after a hefty dose of steroids, 60mg i dosed off to sleep.
I didn't know but in the 2 hours i was asleep Clare had left to go to the chemist to get me a new blood glucose monitor, i had lost mine a few weeks back and never got round to replacing it, naughty i know!!! ..steroids are known to make blood sugars high so she was determined to keep an eye on my sugars beings as i doubled my usual 30mg dose of steroid.
I normally would never have taken drugs not prescribed to me through fear of side effects but i was desperate, i was so scared, i could feel my lungs shutting off as my airways were tightening, the panic had set in and i would have taken anything to stop the pain, the breathlessness and the fear.So anyway when she got back from town she tested my sugars they were reasonable at 7.3 but slightly high as id not eaten a thing all day, my chest felt more settled by now so i had enough breath to think about food so Clare left me with nebulisers to keep me going over the weekend but i think a call to my team is in order Monday as they refuse to believe i have asthmatic symptoms..well today proves i do especially as i responded so well to the medication from Clare, much more response than to heated saline which is what they have given me.
I dont want other mornings to be like this morning, it is completely life limiting, i can never keep plan with friends, the shortness of breath and the pain is debilitating and after the many hours it takes to get my chest to a reasonable standard im far to exhausted to go and bath let alone go out have fun and feel fulfilled daily.
I feel my life switches between pain, medication, extreme fatigue and tiredness then eventually sleep.
I'm a prisoner in my own bedroom even downstairs is off limits as coming back upstairs is more effort than its worth as it takes me 20 mins to recover from the exertion of the stair climb.Im fully compliant with all my medication yet im in this state more often than not, I'm just declining day by day.
My age scares me as in the CF world i am old, average life expectancy is around 30 most people at 24 have had a transplant already or worse yet passed away, i know i must be doing reasonably well as im not even listed for transplant yet but i feel that is coming.
I'm finding it hard to stay positive but i know i have too, because if i dont whats the alternative...death? Death scares me but somehow i feel it looming somewhere in the background and it scares me to my very core.
I can not give up this fight just yet i need to find the strength from somewhere.....somehow
Friday, 5 August 2011
I'm freee!
So after my last post I ended up in the LCH. It was the usual round of IVs, aminophylline infusion, intense physio, NG feeding, countless blood tests and lung functions. My lung func when I went in was the lowest it had ever been 34% but getting on top of this infection early meant I started to feel better quite quickly and my lung func quickly increased with all the IVs.
While I was in my cortisol levels came back as quite low which could explain my extreme fatigue, they have taken some more bloods to check them and hopefully I will get them back when I next go to clinic,they were also checking my iron and thyroid levels. On discharge my lung function was 48%, so big improvement. I have been having huge problems with my sinuses so a CT was also done and showed my sinuses were very blocked and full of gunk as well as polyps. So surgery is on the horizon, just waiting for an appointment with ENT. My x ray was a bit dodgy so kinda glad I went in early, my BP also played up and was constantly low, could be due to dehydration or a side effect of having low cortisol levels. I just want my fatigue sorted out as its very disabling and annoying!
Going to be trialing a new sinus nebuliser, hopefully this will help the sinuses a tad. Whilst doing that they are going to trial bramitob and see how I do with that.
Was kept busy in hospital by my bestest Clare sending me a thoughtful gift of crafty bits, she usually comes to see me twice a week but was staying with her nan the whole admission in oxford shire so couldn't come see me. Clare is like my sister and the best friend i will ever ever have, we met in hospital 12 years ago and have been inseparable ever since, we even lived together for about a year. She is the only friend i have who really understands how lonely it can get in hospital looking at the same 4 walls everyday so she always makes sure im occupied, she as well as my family are the only people to come and see me or send me a get well card, it seems silly but just a card of recognition can really brighten your day in there. Small gestures can often be the biggest :)
I'm so glad to be home, I have Booked a holiday today to feurteventra for January, its always a depressing month so nice to have some fun things to look forward to!
Got to try and keep very well, lots of things coming up! My birthday, various friends birthdays, crimbo and now the holiday! So no germys please!
Anyway dinner time :)
Till next time x
While I was in my cortisol levels came back as quite low which could explain my extreme fatigue, they have taken some more bloods to check them and hopefully I will get them back when I next go to clinic,they were also checking my iron and thyroid levels. On discharge my lung function was 48%, so big improvement. I have been having huge problems with my sinuses so a CT was also done and showed my sinuses were very blocked and full of gunk as well as polyps. So surgery is on the horizon, just waiting for an appointment with ENT. My x ray was a bit dodgy so kinda glad I went in early, my BP also played up and was constantly low, could be due to dehydration or a side effect of having low cortisol levels. I just want my fatigue sorted out as its very disabling and annoying!
Going to be trialing a new sinus nebuliser, hopefully this will help the sinuses a tad. Whilst doing that they are going to trial bramitob and see how I do with that.
Was kept busy in hospital by my bestest Clare sending me a thoughtful gift of crafty bits, she usually comes to see me twice a week but was staying with her nan the whole admission in oxford shire so couldn't come see me. Clare is like my sister and the best friend i will ever ever have, we met in hospital 12 years ago and have been inseparable ever since, we even lived together for about a year. She is the only friend i have who really understands how lonely it can get in hospital looking at the same 4 walls everyday so she always makes sure im occupied, she as well as my family are the only people to come and see me or send me a get well card, it seems silly but just a card of recognition can really brighten your day in there. Small gestures can often be the biggest :)
I'm so glad to be home, I have Booked a holiday today to feurteventra for January, its always a depressing month so nice to have some fun things to look forward to!
Got to try and keep very well, lots of things coming up! My birthday, various friends birthdays, crimbo and now the holiday! So no germys please!
Anyway dinner time :)
Till next time x
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