an old letter!!

Searching through the computer today and i found this::

Kate i am poorly honey, I am not sure how much I have let on but I have felt rough for days and nothing is working, I am of to hospital soon as much as I don’t want to but before that I want to tell you a few things just incase I never get the chance.

As I sit here fighting for breath, I seem to have completely lost all my brains so sorry if this makes no sense.

Well I guess the most important thing I want to say thanks, you have always been there for me and I love you with all my heart. You are my best friend the whole world, we have been through so much together and I never want to leave you. You have always been there for me through thick and thin and I want to say I will never be able to thank you enough!!

Some things I want you to promise me, if this all goes tits up and the worst happens don’t be sad you can cry but don’t be sad we always knew my life would be short but I have had a good one, it has had its ups and downs and definitely had its trials and tribulations. In a way if this is it maybe its better to go out on a high, I have had a brilliant couple of weeks and felt well, so at least not all suffering. I can’t say I am not angry I think why me all the time, but this is not a time for that, I don’t have the energy to be honest!!

These are a couple of things I need you to do for me.

My family, I know this is not your job but tell them how much I love them and how I will miss them terribly!! All the paper work etc they will need is in my room. Tell Pete how much he means to me and how much I love him!!

Granddad, please make sure someone takes care of him! As much of a nightmare he can be I love him and worry about him all the time!! I will miss him and tell Uncle Stephen he has to look after him and take care of him

Now for the morbid stuff I guess

Funeral, please make it a celebration of the good life I have had no black and very simple, not to religious and no smelly flowers please!! I will sneeze all the way to heaven!! People can give donations I guess maybe to asthma UK, they need to do something to stop people living with this awful disease!!! If you can get Zach Efron there that will be great!!!! As or music, I don’t mind something cheerful you can always play mamma mia or high school musical, may not be appropriate so will leave it to you,  As for afterwards whatever you like but remember I will be watching so no locking yourself in the toilet and crying, talk to me I will always be there for you!!

Well I guess that is all I wanted to say and fingers crossed you will never have to read this and once again I will beat it again, I am tired this time honey and cant carry on like this it is hard work!!

One last thing, I once heard someone say, life is not measured in the breaths you take but in the moments that take your breath away!! This is so true, never forget this live life to the full and never regret anything!!

Please if I don’t, remember I am always here for you and will be with you always, I will be up there having a party with my mum and your dad and all our families so I am not scared just sad that it had to be this way!!!

Well honey of to hospital now, so fingers crossed that they can do medical miracle!!!

I love you always and forever and my life would have been nothing with out you!!!

Your bestest friend.

I remember briefly writing this many months ago when i was so poorly and honestly thought me time was up!!! Thank goodness it wasnt and i am still around, this made me think how bad things have been! 

Why i am i putting tit on here, i have no idea i just think it shows how ill i have felt and com eout the other side, i guess i  need to look at this and be thankfull i am still here but also think that life can be easily taken away so i think the moral of this is live every moment like it is your last!!!!

Floods of tears all becauseof a song!!!!

Why is you can be driving home from work when suddenly a song comes on the radio and you realise tears are flowing down your cheeks and all for no aparent reason!! This is exactly what happened to me today on my way home from shopping. A sugarbabes song called changes came on the radio and i guess it just related to everything that is going on in my world at the moment!! Nothing is ever how you plan it to be and things can change over night so people should be thankfull or what they have got although i have to agree it is never enough and we allways want more
This week has been another busy week at work, rushing around not getting a lot done most of the week but then again i have spent lots of time doing things i enjoy with our residents so its just paper work to catch up on. Once again i have got to the end of the week and i am absolutely exhausted to a point of collapse!! I wish i could just convince myself to give up ceratin things but i am stubborn cow and feel like if i cut my hours then i am letting myself and others down!! I have realised this week how much i have given up allready i never go out anymore as i am just to tired by the evenings.
I did force myself to walk into town one afternoon after work but felt really rubbish and out of breath half way and then had to struggle back!!  I am sure life used to be easier then this!!!
The cold weather has hit hard which doesnt help anyonw i guess but i particularly hate the cold and so does my body.
Well at least i have the weekend of but yet again what a waste of a weekend as  i am gonna spend it sitting on the sofa or inbed trying to regain some strength for another week. I am starting to feel like i am existing rather than living lets hope things can get a bit better!!
Enough of my mubling on now of to culr up on my sofa for a little sleep me thinks!!!!!

Sarah
xxxxxxx

should be grateful for those around me!!

Today I realised just how lucky I am!! Firstly I have so many people around me that care and want to help! I just need to start using them I think!!
Secondly I have the most fabulous medical team around me thAt bend over backwards to help and support me!!
Have decided that this week I am going to have to take it easy!! Either that or I will end up in hospital which is not an option!! I just hope people will understand and let me do what I can!!

bad ending to a bad week!!

Finally managed to write my open university assignemnt and it was acutally easier than  thought i am not sure why i was putting it of!! well i say that but we will see when i get the marks!!
Took grandad to the opticians today and that was funny, he obviously hasnt been to a town for years and he was quite funny. managed to get his glasses sorted and i had my eyes tested, one part of my body that is fine as didnt need new glasses which is one good thing.
Got home and again fainted, very bizarre feeling and it seems my body can not cope with doing anything at the moment, i thought i felt better yesterday but very short lived. Aday on the sofa for me  and doing not a lot and tomorrow i am not even getting out of bed as i need to go backto work on monday and for that i need to be well.
Having an extra day ofthis week has made a lot of differernece and it wasnt until i started to rest that i realised how exhausted i am!! thank god i have such a caring and understanding manager and work collegues, i hate not being able to keep up and feel like i am letting people down all the time!!

To sum up this week has been horrible full or tears, fears and me being terrified that i cant cope. partly this is because i feel so frustrated with myself  for not being able to keep up and partly angry that the future seems so bad! at one point in the week i couldof quite easily just give up and walk away from it all!!i then hit reality fast and realised that this didnt just effect me but the people around me, my close friendy and family who have stood by me through thick and thin must also be as terrified of what the future holds and i was failing to see this. For there sack i cant give up and have to carry on.
Inloads of pain tonight and again coughing up blood so i think time for some strong painkillers and rest i think!! more positive sarah will be back soon

xxx

day of enforced rest!!

well after what was beginning to be a horrid week it all came to a head yesterday! i managed to collapse into my managers arms!! luckly no hospital as convinced them i was fine, although felt really dizzy i was!! spoke to doctor and it seems i have a virus and the fact i hade reduced my steroids had caused a bit of a crisis!!
anyway had a forced day of today and i think i needed it, eventhough i have been bored stiff i have rested loads and will be doing for the whole weekend!! i guess this is my bodys way of saying enough is enough and i have no choice but  to listen!!
chest grumpy this afternoon so had to ring nurse for advice and have agreed to increase pred and start antibiotice to avoid admission!!
anyway all in all the week ended ok and i am lookinh forward to a new start on monday lets hope things are ok by then!!

what a day!!

why is it you only think you shouldnt of said that until you have alleady said it!!
Well that is exactily what i did today, all in frustration and anger but more ant myself than anyone else but took it out completely on other!! i was so bloody angry that i just couldnt do what i needed to as my body is so bloody useless that i completely lost the plot!!!! now feel awful and not a lot i can do about it!! is it time to give up? i think it is i have no more fight left in me and i dont really care anymore!! that sounds so depressing and im not i just cant see a point in the future!!!
well i guess tomorrow will be another day and another day of me not being  able to do all that i want or need to and letting everyone down!!!
lets hope things look different in the morning or i dont know what i am going to do!!

xxx

another busy week!!

well another week has gone by and still no further forward!!
i am finding my ou course harder than i thought it would be, not so much the work but the keeping up! i am going to make a lot of effort to catch up this weekend!
Health wise, no change i have been struggling with swollen ankles and as a result of blood tests, my kidneys and liver function was not normal (what part of me is ever normal)!!! i also have had some probems with coughing up blood which has been a bit embarrasing especially when i am at work, anyway i saw my respiratory nurse at surgery and she was as usual lovely and after lots of discussion about increasing symptons and  couging up blood (to the point where i have managed to ruin a couple of work tops)!! it was decided that i needed so antibiotics for an infection!! so started then yesterday and now feeling yuck and sick as i think they are affecting my theophyllin levels so thats my weekned ruined!! I have an appointment with her again on monday and i hope things have improved otherwse i am not sure what will happen!! I received a letter from the brompton for an appointment on wednesday next week and feel like telling them its a bit bloody late, im still waiting for southhampton but its only been a couple  of weeks!!
not been a nice week generally, people think they can go around upset others just for the sake of it and i dont see how people can enjoy that!!!!
I dont have much else to say as partly to tired and partly cant be botheres, life seems so hard times and i really cant be bothered to get involved in it right now, i am kind of riding the storm and see what comes out the other end as that seems the only way forward!!
enough moaning from me
sarah!!

long over due update!!

i cant believe how long it has been since i have written anything here!! its been a bust couple ofmonths and not much has changed. work wise i am now working less hours which is better, i have also started my ou course which is proving harder that u thought but i am surei will get the hang of it soon. i am also now gettind dla which has meant i have a new car and can work less hours. it was hard to accept at first and hate seeing myself as disables,i guess  i still dont sometimes as i think i have to stay positive and be independant.
health wise nothing has changed, i am again writing this post admission to local hospital, this time was scarey, i had a bit of a coldso went to the surgery and saw the lovely nurse for advice, we had a discussion that involved her telling me i wasnt welland needed to go to hospital whilst i was saying i was fine, well i lost and an ambulance was called and ended up going to hospital under blues and twos!! the next thing i new i wasin resuss and then a matter of hours later in itu being pumped thorugh of drugs. really scarey considering i was sayng i was fine a few hours later. i felt so poorly in the end i couldnt of cared if i lived or died. anyway a few days later after lots of rest, drugs etc i was back on normal ward and things improved enough for me to go home. since i have been home i have been struggling to come to terms with the whole situation, i have had some many emergecy trips to hospital in thepast years you get used to them but how many more can i handle im not so sure!! ended up havbing a horrible week of snapping at other people including my best friend which really isnt fair as no one else is to blame. i guess i just feel like itsnot fair what is happening and how i can do nothing to stop it. i never reallised how much my situation effected others and one person made me relaise that it hurt her evrytine i was ill and she didnt know what was going to happen, she is my best friend and i never want to hurt her, fingers crossed i am feeling more myself now and back to being more positive after speaking to someone who made me realise that you have to be positive and concentrate on today as no one knows what tomorrow brings.
one good thing that came out of recent admission was that i got a referall to southhampton hospital so no more going to the brompton as i was not getting anywhere with them so fingers crossed maybe some answers soon/
well what a load of waffle that was but feel better for getting it of my chest
i have a busy week ahead of hospitak appoinemtns and on tuesday i am seeing hospital nurse andi am going to tell her how i feel as maybe she can help me understand it all.!!

future!!

I have decided enough of being miserable and things are only going to change if i try and change them. I am going make a list of that i want or need to do in the future:

1. Try and get some better control of my health, firstly get my RBH appointment brought forward, they are the only people that can really help and if they cant do anymore then atleast i can say that i tried.

2. Start thinking about number 1, i cant please everyone else all the time so i am going to stop trying, if people are my real friends they will stand by me no matter what.  For a little while i am going to concentrate on myself and getting what i want or need out of life.

3. Decide what to do with my job, whether i reduce my hours or change completely i am not sure, all i do know is that i can no longer work full time and have any kind of life, maybe i could just reduce my hours for a couple of months and see what happens.

4.start the OU course that i have been wanting to do for ages but keep putting of.

Well thats a start but most importantly live every day as if there was no tomorrow!!

FEELING DOWN POST HOLIDAY

Well just returned from a fabulous holuday to turkey, really needed the rest as was really tired before i left!!
the holiday was great, laid on the beach all day!! as for my health it was relatively ok over there, had a few dodgy moments but nothing  i couldnt deal with.
no back in england and things couldnt be more different. As soon as i landed my lungs turned against me and they dont seem to want me to have a life at all!!
I guess i was hoping that once back from holiday things would be different but they arent.
Just been to see respiratory nurse and she was fab, she could tell  i was fed with it all and has given me some advice, the most important thing is that i need my brompton appointment brought forward, so next week i am going to get on to it.
I have to go back to work next week and i am honestly dreading it!! i just hope i feel a bit better otherwise it is going to be really hard work, i am not sure how much longer i want or can work 36 hours a week (it frustrates me as i used to work 50 hours a week no problems.

Well hopefully this is just a bit of feeling down post holiday and i will pick myself up over the weekend!!

BETTER WEEK!!

Much better week this week!!
It has been a busy but better week, finally caught up with work after being in hospital and even managing to get on with coursework, really need to get it finished before the end of the month so must plow on!!
Health wise, things very up an down , had hospital in the week and the nurse was really lovely, she sorted out my theophyylin level and arranged everything i needed, also she is talking to consultant about infection again, so just waiting to hear! she deserves a medal as she helps me loads and i know she is really busy!!
Still in lots of pain but not to bad with painkilers and am determined to not let it get in the way of gettng on, wlthough the truth is it bring me to tears regularly!!

not alot else to say, lets hope this week remains positive and i aoid hospital at all costs!!

well another week gone and what a horrible one it has been!
started on monday with the anniversary of my mums death! i miss her terribly at the moment with all that is going on!!
some positive stuff has happened, spoke to nurse at local hospital and she was fab as allways, really helpful and managed to speak to the RBH for me! I also had a message from RBH to say that they are still looking into the situation and have an appointment on 19th may so we wil see what happens after that.
Struggling emotionally at the moment although managing to hide it most of the time! i think it is because i am so exhausted all the time and just want to collapse when i get home from work with exhaustion it is so frustrating as my brain wants to run around like an idiot but my body says no. the pain is terrible, taking loads of pain killers and even that doesnt help.

I really must stop moaning as i i am well aware there are many people out ther much worse.

at least the weekend is here so having a rest and catching up on stuff at home, got to look into getting a new car as this week but we will see, hopefully dad will sort it for me.

well another week os over and new one about to begin!
this week i am determined to be more positive and get things moving, just need to find some energy to do it.

11 YEARS AND I FEEL LIKE IT WAS YESTERDAY

Tonight will be the the exact night 11 years ago that my beautiful mum collapsed and was placed on a life support machine, i will never forget that awful night, i miss her everyday and right now need her more than ever!!! Planted some beautiful flowers in her memory today so i can look at them everyday. miss you allways mum xxxxx

BUSY, BUSY ,BUSY!!!
Spent the whole day doing carpet cleaning, house work and gardening!
so much for taking it easy! in a lot of pain with chest today so loads of pain killers taken, going to see gp on monday if no improvement as maybe i habe another infection! hope not as i really need to be well for a while.
had a lovely chat with a good friend today and really talked things through, realised how much work is annoying me and people interfering, i have decided from now on head down and do what i need to do, onwards and upwards from now on!!!!

EXHAUSTED
i am beyond tired today, could sleep forever!!!!
i am not sure how much longer i can deal with feeling like poo, being exhausted, working and trying to look after everything at home!!
spoke to royal brompton yesterday and they promised to call today after yesterdays pointless appointment, but so far no phone call!! and no call from local hossie either. i am not sure how much longer this can go on!!!!
at least the weekend is here so can just rest and relax!! ready for a new week to start again, got loads to do so must get on

what a day?

Spent two hours travelling to the royal brompton today and was seen for a whole two minutes, what a waste of a day, spent 7 and half hours out of the house and still no further forward!!
getting really fed up now as there just seems no light at the end of the tunnel!!
was only discharged from hospital on tuesday and all they can say is that i am obvioulsy reovering still, the point is this is all they ever say, i thought they were supposed to offer new treatments, but it seem not!! oh my god i am really moaning, must stop it as it does me no good.
still feeling rough and very sympatematic but have to go back to work tomorrow as cant afford not to!!

I suffer with severe brittle asthma, which is at the most severe end of the disease. Anyone that tells you that asthma is just an irritating wheeze that affects children is wrong!! I have daily symptoms, take lots of medication, including high dose steroids and daily nebulised medication. I also take more medications to reduce the side effects that the medication causes. Having severe asthma means that my life is very unpredictable. I can feel fine one minute and have an asthma attack the next. On a good day I feel like I have more energy and can do normal things, but on a bad day I have trouble carrying out the most basic of tasks such as getting dressed. I have had to give up many things over the years that other take for granted, this have included changing my job, not being able to take part in things I enjoy and even a night out with my friends can cause be a problem. Asthma can be frightening, debilitating and at times life threatening. Believe me I know. I have been hospitalised more times than I can remember and without the life saving drugs etc that they give me I wouldn’t be here today!! I am well aware that each asthma attack could end my life and this causes me, my friends and family great distress. I have learnt to deal with this over the years and it makes me more determined to live every day to the full and appreciate what I have in life.

.January 2010I have recently been told that i have emphysema, which means my lungs have been damaged beyond any real repair!! This will progressivly get worse and worse I am determined to try every treatment option and live my life to the full