Wednesday, 20 July 2011

Well i think i am getting old!! Today i worked a care shift and i forgot how hard those girls work, im not sure how i am going to get through another one  on sunday but i will.I realised howmuch i miss the job but at the same time i realised how hard it is and i am not sure i would manage it now. Anyway all in all a busy week with so much to do that i have kind of lost the plot with most of it. I think tomorrow i may have tolock myself in the office to get some paperwork tomorrow. Not to bad as i wasnt supposed to be working tomorrow as i was supposed  to be going to southampton but i cancelled it due to the infections i have at the moment. I have rescheduled for august so i will see how i feel.
I was so upset on monday after over hearing people talking about me and my situation, i wrote a long letter that i was going to give to everyone at work to see if it would help them understand why i am working etc, but chickened out giving it to them as i thought maybe it woul make things  worse. I might post it on here, but im not sure at the moment, we will see i guess. Anyway nothing else  to say at the moment. and after a secod thought i am going to post the letter on here as this is my blog and my feelings and people should respect this.

Dear All Staff
As I write this to you part of me wonders why I am doing this and part of me thinks maybe I have been selfish in not doing so earlier. It seems that some people think that they need to comment on my situation and I guess I should not be surprised. It upsets me greatly over some comments that I have heard recently and to be honest a little surprised, but am going to put it down to lack of understanding. I would like to take this opportunity to thank the majority of people that have supported me and been so lovely over the past few weeks and months when things have been particularly tough, this is by no means aimed at you, I just feel its time everyone knew and maybe they can then understand.

It is no secret that I am not particularly in good health and over the past months things have deteriorated somewhat. I think that maybe it is time to tell everyone what is going on, so here goes. As most of you know, 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!
This has caused Emphysema and another lung disease. This has also lead to chronic pain, which can be worse on some days than others. My lungs are damaged beyond repair and because of this I have daily symptoms, take lots of medication, need oxygen at night and can be frightening, debilitating and at times life threatening. Believe me I know. I have been hospitalized more times than I can remember and without the life saving drugs etc that they give me, I would not be here today!   In recent months, this has caused problems with my swallowing which means I need a special diet and am often sick. this includes coughing up blood which is obviously not very ni ce for anyone

I have an excellent healthcare team who are working with me to control my symptoms as much as possible,  and enabling me to live my life as much as possible, I will however try everything they offer on future and will not give up without a fight.  I am well aware that my life will be cut short by this and I am slowly coming to terms with this reality as hard as it is for me to except and those around me.  
On a good note at the moment, things have stabilized and some normality is possible. With the full support of my medical team and other necessary people, I am determined to live my life to full and do the normal things a 30 year old would do. This includes working and whilst some might think that I should give up work, please put yourself in my shoes, I have no desire to give up work and sit at home all day (although this would be an easier option some days)! Work means normality to me, keeps me occupied, and gives me something to keep my mind active. Of course, there are days when I think I am too tired or in too much pain but I have to drag myself forward, which I do.  I am completely safe to work and there is no risk to anyone, the necessary risk assessments have been put in place for me to continue to work safely and I have the support of the necessart people. At no point am I asking other people to do my job for me and I can assure you I am not treated any differently because of my situation. I will always do my job to the best of my ability and will help anyone, as you all know. If I am having a bad day then I will always try but may ask for some help, this is not me not doing my job it is asking for a little bit of help to do it. I am not looking for anyone’s sympathy in writing this I would just like people to understand my situation and how a little bit of compassion can go a long way. I hope this gives you a little more understanding of my situation and please feel free to ask me if you want anything, I can give you the correct answer rather than the ‘Chinese whispers’ answer.

Oh well its done now.
Im of to bed as im knackered and have a busy day tomorrow, and its kates birthday so im of out for dinner. I really hope she has alovely birthday as she deserves it. I hope she likes her presents as well!!

Friday, 15 July 2011

If only life was this easy!!

I am hereby officially tendering my resignation as an adult.
I have decided I would like to accept the responsibilities of an 8-year-old again.
I want to go to McDonald's and think that it's a four star restaurant.
I want to sail sticks across a fresh mud puddle and make ripples with rocks.
I want to think M&Ms are better than money because you can eat them.
I want to lie under a big oak tree and run a lemonade stand with my friends on a hot summer day.
I want to return to a time when life was simple.
When all you knew were colors, multiplication tables, and nursery rhymes,
but that didn't bother you, because you didn't know what you didn't know and you didn't care.
All you knew was to be happy because you were blissfully unaware of all the things that should
make you worried or upset.
I want to think the world is fair.
That everyone is honest and good.
I want to believe that anything is possible.
I want to be oblivious to the complexities of life andbe overly excited by the little things again.
I want to live simple again.
I don't want my day to consist of computer crashes, mountains of paperwork, depressing news,
how to survive more days in the month than there is money in the bank, doctor bills, gossip,
illness, and loss of loved ones.
I want to believe in the power of smiles, hugs, a kind word, truth, justice, peace, dreams,
the imagination, mankind, and making angels in the snow.'s my checkbook and my car keys, my credit cards and all my responsibility.
I am officially resigning from adulthood.
And if you want to discuss this further, you'll have to catch me first, 'cause,
"Tag! You're it."

to my friends!!

The 24 Interludes of Life
1. Don't go for looks, it can deceive; Don't go for
wealth - even that fades away. Go for someone who
makes you smile because only a smile makes a dark day
seem bright. Hope you find that person.
2. There are moments in life when you really miss
someone so much that you want to pick them from your
dreams and hug them for real! Hope you dream of that someone.
3. Dream what you want to dream; Go where you want to
go; Be what you want to be; because you have only
one life and one chance to do all the things you want in life.
4. May you have enough happiness to make you sweet,
enough trials to make you strong, enough sorrow
to keep you human, enough hope to make you happy,
and enough money to buy gifts!!
5. When one door of happiness closes, another opens
but often we look so long at the closed door that
we don't see the one which has been opened for us.
6. The best kind of friend is the one you could
sit with on a porch swing, never saying a word,
and then walk away feeling like that was the best
conversation you've ever had.
7. It's true that we don't know what we've got until
we lose it, but it's also true that we don't know
what we've been missing until it arrives.
8. Always put yourself in another's shoes. if you feel
that it hurts you, it probably does hurt that person, too.
9. A careless word may kindle strife; A cruel word
may wreck a life; A timely word may level stress;
A loving word may heal and bless.
10. The beginning of love is to let those we love be
perfectly themselves, and not twist them with our
own image - otherwise, we love only the reflection
of ourselves we find in them.
11. The happiest of people don't necessarily have the
best of everything; they just make the most of everything
that comes their way.
12. Maybe God wants us to meet a few wrong people
before meeting the right one so that when we finally
do meet the right person, we should know how to
be grateful for that gift.
13. It takes a minute to have a crush on someone, an
hour to like someone and a day to love someone -
but it takes a lifetime to forget someone.
14. Happiness lies for those who cry, those who hurt,
those who have searched and those who have tried.
For only they can appreciate the importance
of people who have touched their lives.
15. Love is when you take away the feeling, the
passion, the romance and you find out you still
care for that person.
16. A sad thing about life is that sometimes you meet
someone who means a lot to you only to find out
in the end that it was never bound to be and
you just have to let go.
17. Love starts with a smile, develops with a kiss
and ends with a tear.
18. Love comes to those who still hope even though
they've been disappointed; to those who still believe
even though they've been betrayed; to those
who still need love even though they've been hurt before.
19. It hurts to love someone and not be loved in
return, but what is the most painful is to love
someone and never finding the courage to let the
person know how you feel.
20. The brightest future will always be based on a
forgotten past, you can't go on well in life until you
let go of your past failures and heartaches.
21. Never say goodbye when you still want to try -
never give up when you still feel you can take it -
never say you don't love that person anymore when
you can't let go.
22. Giving someone all your love is never an assurance
that they'll love you back! Don't expect love
in return, just wait for it to grow in their hearts;
but if it doesn't, be content that it grew in yours.
23. There are things you love to hear but you would
never hear it from the person whom you would like
to hear it from, but don't be deaf to hear it from the
person who says it with his heart.
24. When you were born, you were crying and everyone
around you was smiling - live your life so that
when you die, you're smiling and everyone around
you is crying.
Well another week over and it seemed to be going a bit better until this morning when i fainted in thebathroom, now have lovely cuts on leg and arm to put up with which bloody hurt!!
 Anyway all in all things are ok, in the normal unsettles way, had to stop antibiotics as i was completed mad on them and could not remember anything and spent whole time confused, much better since of them and things have settled back to normal. Monday i was really poorly and thought i would end up in but through some perserverance and taking some control igot through it, although at one point i thought the decision was going to be taken out of my hands but all in all it was ok!! I think it was the weather as it was really humid !! Work is busy, busy , busy and whilst i am managing  it is bloody hard work, i have the most fabulous work collegues and am trually grateful for all there help and support,today another day of gardening was done and it was quite fun really although hard work, imnot going to go into detail about that as dint want to cause anyone upset! Another day tomorrow and i have a list as long as my arm to do, so we will see what i get done, fingers crossed lots and lots so that i can start a new week next week.
I still cant eat properly but im kind of getting used to it, its funny how when you find eating so difficult you end uo not enjoying it and then eventually you dont want to eat.
I really want to find a way of thanking those around me but at the moment cant think of a way. Kate is a star as always and she knows it, although i know she is having a hard time at the moment and i  hope she knows i am always there for her. Theresa my manager is a star and very supportive, im surepeople think i get away with stuff  and i dont i can assure you, we had a good chat in the week about some serious stuff about life etc and i think i knowwhat i want to do now, anyway not going in to that today.
Oh well im waffling now so might as well sign of and go to bed. Tomorrow i have to be up at 6 which i havent managed all week so tomorrow might be  tough!!!

Monday, 11 July 2011

Poem that i found

Life should NOT be a journey to the grave
with the intention of arriving safely
in an attractive and well preserved body,
But rather to skid in sideways,
chocolate in one hand,
wine in the other,
body thoroughly used up,
totally worn out and screaming
"WOO HOO what a ride

I think this is how everyone should live life!!!

No sleep again!!!

Thought i would update this as sleep seems to have escaped me tonight.
Things are evry much the same and missed being admitted to hospital today by the skin of my teeth!! I was feeling pretty yuck but it was very humid so i think everyone is struggling a bit. Not helped by the fact i had to reduce theophyllin because of antibiotcs and maybe it has knocked my control a little bit. Anywas after some nebs and losening up what was there i felt so much better.
I have ht emost fabulous manager who sat with me throughout and then of course my best friend was arround so i always feel reassured that she know me well andknows when things are really bad, anyway we go through it and they helped me loads, i know people think i get treated differently and i am telling i dont ask to be and i dont think i am, i still have to do my job, which i do but today just was a bit harder. Anyway all in all feeling better tonight and going to see how tomorrow goes as to what i am going to do,  domt want to increase pred as i dont think it is necessary.
Pete is coming homw tomorrow so im hoping to catch up with him and quite possibly get him to help me catch up with housework etc.

Not a lot else to say i guess at the moment so might as well try and get some sleep.
night night

Sunday, 3 July 2011

I am going to apologise in advance i think this may turn in to a bit of a rant, i have decided that if i do it here then i wont be shouting at anyone else and i get it of my chest which is what this is meant to be for.

Firstly i have had the loveliest week of work, the beginning of the week i spent doing nothing and then went to Pete's on Thursday with Kate, we had a lovely time just doing what we both wanted for a change, we even went to chessington which was fabulous, i was so tired on the way home but then again I'm not surprised we were on the go all day, i even went on the scare rides and ended up laughing so much at Pete screaming it was funny, just like the good  old days with us all having fun. well apart from that we went shopping and drunk far to much but then again its only every once in a while. There is no way the dietitian can say i have lost weight this week as i have eaten loads and loads so  i have definitely put on weight, which has annoyed me a bit but i am sure it will come of again.  Kate knows she means the world to me and this weekend made  me realise how much she is my best friend an dhow i couldn't do without her, i know she will read this and i just want to say ou are my rock and thank you, i know i was a grumpy moo coming back but i was kind of falling apart, after a busy weekend and having to come back to reality, thank goodness for sun glasses so you wouldn't see the tears flowing.
One good think this week only one episode  of vomiting blood so i think the rest has done some good, i just hope things are settling down, i am fed up with being on a roller coaster and wont of!!!!
Well spoke to rose on Thursday and she was saying that sputum result are back again, it seems i am still growing pseudamonas and mrsa so the antibiotics didn't get rid of it so far,we will see what Dr Tate says, she is going to speak to him again about it and i have decided to leave it for them to fight it out.
Oh well other than that and being very very tired i am fine and plodding along, Several things are really bugging me at the moment so i may as well get it of my chest here!!!

Work: I love my job but omg is it hard work, and it is getting harder, i feel like everyone is waiting for me to fuck up and like i am being watched all the time, not by management, my manager is the best manager i have ever had she is unbelievable supportive and re all helpful, i think i am very sensitive at the moment and i worry more then others do, i have all ways had loads of energy and bounded round work, im not sure if it is me or the job, maybe it has run its course, maybe m expectations are to high,  i don't know, well i have to go back tomorrow and i have done no planning!! I think i need a job where i go in, do it and go home, my life just doesn't allow all the other stuff at the moment, i guess it will sort itself out and i guess what i am terrified about is that i am near to giving up work and then i think my life will just exist, i cant go to work and expect people to carry me, which i absolutely don't but I'm not sure what people think!! Oh well that's a rambling mess so best move on!!

Home and families: At what point do i Say i cant cope!!! its hard work juggling ever thing and i feel like i am expected to cope!! I love my family dearly and maybe if i was more honest with them i might get more help but just once in a while i would love them to help out!1 Oh well not going to waste my time going on about that as its not really  worth it.

Life: I want my old life back, i know i am selfish but i dont want to have to get up  and take a hand full of drugs just to function, i don't want to have to plan everything like a military operation just to function. I know i am being selfish and should be great full for what i have! Its just so bloody hard admitting how bad things have become!!

I received this on FB at the weekend!!

A wise old man once said ...There comes a time in your life, when you walk away from all the drama and people who create it. You surround yourself with people who make you laugh, forget the bad, and focus on the good. So love the people who treat you right, pray for the ones who don't. Life is too short to be anything but happy. Falling down is a part of life, getting back up is living!!
I think i need to start living my life with this philosophy and am going to tr much harder to be positive and not let people get to me.
I think i need a plan and that is:
1. Tell my friends and family everyday how much they mean to me.
2. Speak to my manager about what she expects and how i need some help, at least if i say something then she know that i am not coping!
3. Speak to my GP about things and ask his advice (that may take a while as it is a three week wait)
4. Speak to respiratory nurse about IV antibiotics for infection.
5. Start being more careful with eating and drinking and only have what i am allowed i do not want to be the cause of making things worse.
6. Get a diary and organise myself better, i may even leave it at reception for people to put notes in for me as i am  so forgetful these days and don't want people to keep bombarding me with things for me to just forget!!
Well that's enough for now  and i am sure i wont even do half of them but i am going to try!!
Well enough for now as i feel the need to go and get a bar of chocolate,onlyproblem i will have to get dressed which is a bit of a nightmare but hey ho!!!
I told you it was going to be a rambled message, sorry!!!