New year

It's new years eve and I thought I would take this opportunity to say a little something! Well what a year there have been highs and lots of lows but I got through it with the help of my wonderful friends and family!! The highlight of my year was attending strictly come dancing and meeting Anton du beke it was a dream come true and a day I will cherish forever! I can't thank those that arranged it enough and can't express how much it meant to me! The lows have been bad and when I look ack I'm not sure how I got through them, my health has been really bad at times and several times I have been to poorly o imagine, these times were scary and when I look back I could of easily given up, fingers crossed things have moved on as I'm not sure I can deal with that again. I know things aren't great now but I can cope with how they are. I really want to express my appreciation for my friends and family tat have helped me this year, They really have been fab, the most important person in my life is Kate and she knows t, she is my bet friend and I don't know what I would do without her! The last few weeks things have changed in my life and I'm looking forward to next year, I am now doing some care shifts again and I love it, it is hard work and is going to take a little time to get used to it again but I am really enjoying t, I still do my job one day a week so I feel like I get the best of both worlds. My earth has also been ok and more stable thanks to new drugs, although the side effects are harsh I am dealing with them now, my bloods are still a bit iffy and needed a little boost yesterday but I'm hoping that was a one of I have hurt my back at the moment and am a little worried that it is steroid related so gonna get it checked out on Tuesday when dr speare ribs me about blood results. Oh well I am mumbling now. As for the new year I'm not really one for new years resolutions, I have some decisions to make which includes ou course as I have kind of lost interest and have so much other stuff to do, I will decide next week n what I want to do. As for tonight I'm not sure what I'm doing, I don't mid either way we have tickets to go out but it's kind of a let's decide on the night thing, Pete is in Wales so I hope has a nice time and grandad doesn't want to go out. We will see. The most important thing I have learnt this year is cherish life and cherish those around you as it can be gone all to quick. And to tell those around you that you love them everyday. Oh well I'm having a pj and playing on iPad day I think!! Happy new year everyone xxxxxxxxx

i feel very spoilt, thank you xxxxx

Well Christmas has been and i was so spoilt that i feel guilty, i got some amazing presents and am so thankful. An ipad which i love and will give me hours of fun, a kindle which i love and can use all the time. A new camera which i really needed. I also have some new pjs and a dressing gown and at first thought that i would never wear them as they were a size 12/14 and i have never been that small, but OMG they fit, which is fab and makes me feel better about my size as i was feeling really fat. I also have some fab fairy lights, new duvet and picture for my room which are all up now. Also some microwaveable slippers which are fab and finally and alarm clock so that i get my bum out of bed on time, which i need as need to get up earlier now. Oh and the most fabulous hats which i love. So all in all i was very spoilt as i also have a new hot water bottle which has been used and much, much more. I was in tears a lot yesterday as i felt so special and really feel like i didn't deserve it. It was also another Christmas and this year has been quite bad at times and my health has been horrendous so it was an important milestone. Things are starting to look up and i am hoping next year is so much better and i don't really care if things aren't perfect i just want to live my life and me as well as i can be. This year  has been hard and at times i could of given up but the one thing that it has taught me is how important life is and how important your friends and family are, they really have stood by me this year and helped me so much.

I have changed my job a little bit and so far so good, i am tired but then again i have been really busy, i love working as part of the care team and never thought i would again so its nice to have the opportunity to have another go. The only thing that worry s me is that i can never say if i don't feel well as i will immediately be taken of the job, but like i said everyone gets ill at some point, we will see what happens i guess. I am not sure if i am going to manage the long days but early s seem OK at the moment. Today i think i have over done it a bit as have needed nebs and oramoph this afternoon as not feeling great but i am sure it is just a blip and tomorrow things will fine.

I also have something else keeping me occupied at the moment and it s giving me a reason to get out of bed at the weekends, i think i had got myself very depressed a few months ago and wasn't even getting dressed at the weekends, but now much better.

Oh well i am waffling now but i have one more thing i want to say, well actually two. I know Kate reads this sometimes and i want to see you mean so much to me and i know this christmas has been hard for you and mum, i am always here for you and if you need anything you only need to shout, I appreciate what you do for me, more that anything in the whole world , thanks for the fab presents i love them and hope you like yours, thanks again sweety and thanks for standing by me. Now to say thanks to pete for the fab presents, as i have said before you need to follow your dreams and do what you want in life, im not going to say much more as i have said it all before.

Oh well i need to play with new toys.

Happy christmas to everyone and may your new year be as special as you want it to be

xxxx

what a busy day, Christmas shopping done, tree up, presents wrapped and cards written, so glad it is done as was starting to worry it would never get done. The only down side is feeling terrible tonight, pain is the worse it has ever been and have taken all the painkillers i have. Lungs hate me and are playing up badly, i really need to be OK this week as i have so much planned and with christmas getting nearer i have things to do. 

I am annoyed that my bronchoscopy date has been brought forward to this Tuesday and i am not sure why as it isn't really convenient, i am hoping to get hold of them tomorrow and get a changed back to the original date. we will see i guess and if they wont then i will just have to go with it and work around it.

I am kind of feeling stressed about everything at the moment and finding hard to please everyone so some people are just gonna have to wait.  My to do list never gets shorter and i am not sure it will ever get better, I am not sure if i am gonna manage work tomorrow as i feel terrible but i will try and see what happens as don't wont to let people down, or for people to make comments. Oh well i am whinging on now  and really need to got to bed as i am exhausted. 

Oh well its saturday night again and yet again i am sat indoors with grandad thinking about an early night as i am so tired.
Been a difficult week feeling exhausted and sick, now i have a rash which aparently is a bacterial or viral infection, i have had blood cultures done so now waiting the results, fingers crossed its just a viral thing that is going around.
The new drugs i am taking still make me feel sick and today i have been sick most of the day but i am hoping over times things will get better as i think they are helping in away.
Been to the opticians with grandad today and his eyes are worse so new glasses needed, which means i am going to have to go back next week with him as well, it seems i am the only one this family that does all the running around with him. I am getting so annoyed with people taking the piss out of him and he lets them, it seems anyone can do what they like apart from me, i am not putting it up with it much longer as i am going to put my foot down about it. I am not going to say to much more as i would go on for ages!!
Oh well bed for me as got things to do tomorrow then back to work again for another full week.


x x x

TIRED, FED UP AND JUST ABOUT HAD ENOUGH!!!

It seems like ages since i have updated this but thought i would today as a way of getting a few things of my chest.
Things are not going well and i am being irritated really easy at the moment and i am not sure why. I have started some new drugs which are making me feel sick and absolutely exhausted, Methotrexate and doxyclyine are there names and part of me thinks its not worth it for the side effects however from a chest point of view it is much better so i am kind of stuck at the moment and hopefully things will get better.
I am finding work really tough, partly due to it being the most busiest time of the year for me but also because i am so tired. I also feel like i am being pulled in a hundred different directions and whilst i don't mind i just get so behind with my work and then i end up panicking over it. I also feel like someone that i used to be quite close to is always getting cross with me for no real reason and i end up being really upset, i know its me being daft and i just need to get a grip but  I am not really coping with it all and i have no one to tell so just have to keep going i guess. I guess my body will tell me when it has enough.
I have stopped my counselling as i wasn't finding it helpful, I'm still taking the anti depressants but they don't seem to be doing such a good job but then again that could be just because i am so tired, i am also having problems with being bothered to do things and have started to dread going out and even going to work again, i also feel quite paranoid again so maybe the counselling was doing something i don't know.
I am not sure what the future holds but what will be will be i guess.
As for home i am not going to go into to much details but things are not good and i feel like just running away from it all but that's not possible so I'm kind of stuck really.
Oh well not a lot else to whinge about and hopefully by the next time i post here things will be a little bit different

xxxxxx

Tired,  in pain and very fed up tonight. why is life never simple. I'm just whinging and need to wind my neck in i think!!
I have had a really busy week and there seems no end in sight for at least the rest of this week. I cant sleep which is not helping so fingers crossed tonight i will get some sleep.
I feel like i have a million jobs today and-no actual chance to get it done and now don't know where to start
Oh well enough whinging, im of to bed to see if  i can at least get an hours sleep.

It seems to be ages since i have written on here, not sure why just been so busy.
I warn you know and i am not sure if anyone actually reads this but this is going to be moaning post as i feel like i need to let of steam and this may be a good place. My counsellor always says people dont know how you feel unless you tell them and that is true however some times even telling people doesnt help.

Been a busy few weeks and am full of mixed emotions as the moment. On a positive note i had a horrid cold and i never ended up in hopsital so that was fabulous. After this i had an appointment at southampton this week and i was kind of thinking things had improved however it seems i was so wrong. My lung function was appauling and he was really worried, he thinks i need to be resting more and taking it easy which i find impossible. I am starting some new treatments this weekend and know the side effects can be bad so going to wait and see what happens. at least i dont have to work this weekend as i am exhausted. I hate being constantly in pain and so tired but i guess this is the future and i am not sure anyone really understand.  I guess what makes it harder is i dont look ill so people just dont get it, i just wish sometimes they could look beyond that see that inside i am falling apart. At least i dont feel so depressed now so thats one positive thins, i guess fingers crossed the new drugs work.
I am trying so hard at work to keep going and do all i can but i am finding it hard and i hate to admit it. What i find harder is working all day and then doing it all again when i get home, it seems like i am being pulled in a hundred dufferent directions and everyone wants something at the time. Today is a prime example of that and whilst i am not going into to much detail as i dont want things being misunderstood i could really do with some help sometimes, i wont ever get it so i guess we carry on as we are. At work today i realised how much i miss my old job and how much i have given up, which was hard and meant i had a little cry on the way home.
I am completely bogged down with OU work and NVQ work and i am not sure how to sort it out but do plan on doing some this weekend and then next week so fingers crossed i catch up soon. It seems never ending at the moment and my to do list just gets longer.

Oh well i guess i have lots to be thankful for and i have lovely friends around me, i also have a good job and understanding company so all in all things arent that bad, i ithink i am just exhausted and need to take it easy this weekend, so other than housework, shopping, washing etc etc i might get five minutes rest this weekend!!!

Well once again it has been a couple of weeks since i updated this, the weeks go so quick!!

Not a lot to say apart from things have been better, that is until this weekend when i have an awful cold, its not to bad just annoying really.

got a busy weekend and seem to have work coming out of my ears again, sometimes i wish i never took on NVQ assessing it really does make so much extra work for me, anyway it will get done in the end i am sure.

Oh well life is boring at the moment and that is absolutely fine, i really donlt like to much excitement.

sarah
x

just a quick update

Well it all went wrong, got a cold and within 24 hours was in hospital with pneumonia and a small collapse to the lung, managed to escape on friday which was my birthday. Not a bad admission, they did everything i needed and things improved quite quickly. Now home and i am exhausted, i have hardly moved for days and tomorrow i have to go back to work which is going to be hard, i am starting to think if it is all worth it as i am pushing myself way to hard, but dont know what else i can do. Oh well need to start to think about it a bit more and see what happens.
Cant say much more now as to tired and need o get to bed, i will update soon when i feel a bit more like it.

Thank goodness that is over

What a week, well in a way it has been a good week, i have cried,laughed and cried again!! Its a long story and i dont really want to go into the ins and outs of it but basically for the last few weeks i had been getting more and more depressed about a situation and because i felt so bad i was becoming increasingly parnoid about what people thought. This meant i had convinced myself i was about to lose my job which in turn i felt like i was going to lose everything, the stupid thing was i nearly let this happen and was letting people make my life more difficult just because i kind of got the attitude that i didnt care, when deap down i really did.I couldnt concentrate at work, i even quit my OU course because i believed i couldnt do it and was useless.  That doesnt really make sense but to me it does, basically i nearly gave up on life as i just couldnt cope. The irony of this is people should speak to one another it seems that someone had something they needed to say to me and whilst i was aware that she was being distant it was for completely different reasons than i thought and we were both losing sleep over it, so stupid now and was actually no problem to either for us and we both felt better after the conversation. Anyway since then i have felt a huge amount of relief and realised that things had been going on for a long while and i am the only person that can change them, for this to happen i willbe relying on my friends and family and being more honest about my feelings, i am also putting my health as more of a priority as last week i was so unwell but because i was so worried what people thought i refused to look after myself properly which was not sensible and could of ended badly for me.

So i am trying so hard to get back to myself, which is hard as i still have episodes of being very paranoid, i know who i can trust in life and those people i am going to rely on more and when i am having a bad day or need someone to tell me to stop being daft i am going to be honest with them about how i feel and ask for help, no one has the right to make others unhappy and no one has the right tomake comments about things they know nothing about, so these people are not going to be part of my life.

Oh well i am waffling now all i can say is that over the past 6 weeks there were times wheni could of walked away from life but thankfully i cannow see a future and have decided what will be will be, its a beautiful sunny day so i am going to make the most of it. I have a list of things i need to sort out and do so the sooner i start the sooner life starts again.  Firstly sort  out OU course, do some planning for work and sort out some things at home.
I am not sure anyone reads this and to honest i only write this for myself as a way of getting things of my chest, but i would like to say a huge thankyou to everyone that has helped me and stood by me, you really are my true things and that is one things i have learnt lately, who my friends really are!!!

Oh well another week of feeling like poo and generally getting fed up with it all.
Changes need to be made i think but im not sure what for the best.
I saw my local consultant on monday and had a really good chat with him about everything, he doesnt have a lot to offer and whilst i knew he would say that i was kind of hoping he would have a magic wand. of course he didnt.  He did recommend some patches for  pain and well that was a disaster, put it on and within hours i was nearly unconscious aparently i looked like i was on drugs and was very funny. The moment i said i didnt even have the energy to breath it was taken of and thankfully i felt better in a few hours, i think i may have  to put up with the pain!!
Had ar eally horrid chest all week and it turns out after trips back and forth to hospital that i have pneumonia, steroids and antibiotics  increased and finally i think we are winning as although i am so tired i do feel a bit better. The one good things is that i have managed to stay out of hospital and that is a miracle.
I am so thankful to all those around me that have been so supportive, i really am grateful.

I have done lots of thinking this week and need to start making some changes, i think i have to try this salycilate free diet and see if it makesany difference, i also feel like i am getting really unfit i keep thinking of going swimming which i used to love but soemthing stops me, i really need to look into it this week as i feel like i have to keep myself as physically fit as possible.

Oh well  im waffling now

I want to run away and hide!!

sometimes it would be so much easier to just run away and hide for a while, the problem is this is never the solution i guess!!
It was a hard week last week and then had a big family bbq last night so i am absolutely knackered now, nice quiet day today in the hope i can build up some energy for another week.
Last week things came to a bit of a head and i finally admitted how bad i feel to someone and how sometimes it is easier to not say anything, i guess i am trying to protect other people and myself and if i dont say anything then it isnt real. I am not sure what is going to happen but fingers crosssed tomorrow there may be some answers with consultant appointment. Well we can hope anyway. A few weeks ago i was terrified of what might happen and now i kind of just dont care anymore, i need a life and at the moment i just feel like i am going through the motions but not living at all.
I feel really irritated at the moment and everything is getting to me, i am also very frustrated by the whole situation and how much i cant do at the moment, even simple things are hard work, i am lucky to have very supportive friends and i just dont tell them often enough. I just wish i could hide away from the world for a couple of days and summon up some energy from somewhere to keep going. Oh well what will be will be i guess.

I wish things were so different!!!

Why is life so cruel some times. After a very busy day and quite emotional i got in the car and song come on the radio and i was in absolute pieces. It really was everything i was thinking and how i was feeling that it hit home how things have become. I am feeling so really selfish  at the moment and thinking why me!! Life just seems to be going on in a state of unstableness which means i feel ill all the time and have somuch pain i just cant cope, i am hoping for some answers next week but i think i have given up as there doesnt ever seem to be any. Things arent as bad they were a few weeks ago wheni was very down i just wish things were so different. Right now i could screa if i had any energy but i dont. I think it is because my sleep is not good again and the nightmares have returned, fingers crossed tonight is better and then tomorrow i will feel so much better. People should be so grateful for what they have as it canbe taken away so quickly!!!

Dreams do come true!!!

It was fabulous and an absolute dream come true, have been so tried since i got home but it was well worth it.
Anton swept me of my feet and i have some lovely photos to prove it, he even tripped me over and called me a silly tart but he was lovely, the whole strictly come dancing crew and dancers were so lovely they made us feel so welcome and the show was excellent, i just wish i could do it all again. It was on the TV on Saturday and Sunday and as they say a smile says a thousand words and that is so true i have not been so happy in ages it really was fabulous.
I am so grateful to all those involved in the arranging of it and could not thank you all enough it was everything i wanted and more. Since i have been so tired and in so much pain but slowly i am getting more energy. Decisions need to be made and i know feel like i have to deal with them in my own way. Not alot else i need or want to say really just thanks to everyone that continues to be there for me, you know who you are and i am forever grateful!!

So excited!!

This time tomorrow i am of to watch strictly comr dancing and meet the love of my life anton du beke!!
I am so nervous and i dont know why!
I am not sure if i told anyone but when i was having my mad week, in the middle of it the girls at work sprung it on me that they had managed to arrange it for me and it was going to be in october but  actually its tomorrow so there has been a bit of arranging to be done, but fingers crossed we have a hotel and train all booked and it should be really good.

As for everything else, things have got a bit better mentally and i am dealing with things a bit better,i still feel a bit tiuchy and seem to get offended really easily even when i know people dont really mean it. I am really struggling with pain at the moment and seem to be taking pain killers ever hour or so, this is something i need to bring up at consultant appointment in a couple of weeks as i am not coping well with it, also struggling with oxygen levels as they seem to be loq quite a lot which is making me feel yuck. Oh well all in all things are muddling along and i have lots to think about but in the meantime i am determined to enjoy tomorrow and make it a lovely day for both of us.

Thank goodness that is over!!

Well as it is now easy to see when i last updated this i was not in a good place mentally or physically, last monday i literally fell apart!!! It was long time coming and happened rather badly.
Its funny when you are in middle of it all you just dont notice how bad things are and even with poeple telling you it doesnt seem to make it any easier.
I had had no sleep for two weeks and it was starting to slowly drive me mad i couldnt sleepthrough fear and i couldnt function during the day due to exhaustion. I managedto confide in someone and the knew what was going on and how bad things had become, if it wasnt for her i wouldnt be hear today as i was so down i would of quite possibly done myself an injury, scarey stuff when i thinkabout it now. I amnot going to say much more than that about it, it was an awful time and i dont want to go back there again I am so lcuky yo have such a caring manager who realised how bad things were and helped mesee what i needed to do.. I ended up going to the surgery and seeing the nurse who i see all the time for chest etc, she was by no way suprised and decided i needed some antidepressents and councelling, neiher at the time i had the energy to argue about so ofi went and that night i actually slept for the first time in weeks.anyway the next day things were a bit better but then i was sick and fainted at work, it seems after a long week i had low potassium and high theophyllin levels and felt like death warmed up! after a bad week fromthe new drugs and then trying to deal with the potassium etc i finally felt better after some medical intervention on saturday, it also seems oneof the drugs i was taking for chest can cause severe anxiety so that has been stopped,well enough going on about my terrible three or four weeks, it feels like i have those weeks so i just have to let them go and move on i guess There are some good things that have come out of it and that is everyone knows that things arent so good as i make up and how i am not allways honerst about how i feelorneeding help i have managed to change my hours at work and now feelmuch less stressed about it and will hve some chance to catch up on all the things i have not been doing because i was in such a bad state.  I have also realised how lucky i am to have such lovely people around me and how i need to lean on them sometimes. I also now have a counsellor and as much as i find her hard work and try to think i need her, i guess i do really as it gives me chance to say what i think and no one takes offense. I feel like she has opened a can of worms today and i am not sure i am ready to deal with them at them  moment so i am not gojng to say to much at the moment.
I am still really really tired and by the end of the day i am just about managing to get to bed before collapsing. I need o start looking at the positives and living each day as it comes so thats my plan. I feel  so much better in myself and just hope it lasts for alittle while in the mean time i have some things to sort out and need to work on them over the next few weeks.

Oh well enough for now

xxx

foot prints in the sand!!

I am not really religious but i think this is so lovely!!

a rambling post!!

After what has been a difficult week i think things need to change and im guessing only i can change them.
I think i need ot break things down and concentrate on one thing at a time.
SLEEPING
The sleep thing is still a problem, i managed a night of sleep at work and then one at home but last night not a chance, the same nightmares return. The one thing about not sleeping it gives you time to think, not always sure it is a good thing but ive done loads of it lately. I confessed all to someone in the week and it did make me feel a bit better knowing that i wasnt carrying it alone, i feel so selfish  for putting it on this individual and not sure i should of done. things came to a head i just didnt know what to do for the best ayway what is done is done and i cant change it. I just hope things change soon as not sleeping means i just cant cope with anything, they say your dreams can never be as bad as reality, that is so not true!!!
WORK
I love my job and always, the hardest thing is not coping with it and feeling like i am slowly walking away from it.I have got to a point where i just dont know where to start and as a result getting further and further behind with it. I have the most supportive manager and work collegues and to them i am always gratful, workfeels safe at the moment which is onw good thing, but as someone said the other day i cant rely on only feeling safe there as its not the answer. I really need to make an effort this week to move on anddeal with everything.
OPEN UNIVERSITY
I seem to have lost any interest in this at the moment, i amdue to start another course in october but not sure i am doing the right thing, i think i need ot take a long hard look at what i really want to do andmake a decision.
MY SITUATION
Like seems so hard some time and right now it is the harders i have ever known it, living is so hard and its like a daily fight. to keep going, i think i am a little depressed but its because of the situation and lack of sleep, i think i have put on a brave face for solong that now its stating to crumble one little bit of me at time and im not dealing with it well, running away seems an option but then again that wouldnt be the answer. I just wish life was how it was and things were how i wanted them. I have hadd the offer of some counselling and whilst i never thought it was something i would consider i think i should as mayabe talking about it might help. Last night i realised how much my life had changed, a friend had a bbq and i had to take my own pureed food and then got home and was so sick, partly due to drinking to much, i was so tired and in so much pain when i got home it always makes me think why do i bother going out in the first place, it seems gone are the times of going out and wnjoying myself anf being able to function afterwards.
ME
I am so lucky i have some fab friends around me and i am always grateful to them, on a down side i alsohave people that always seem to want to take take and take some more and really dont think about my feelings, Usually this is not a problem and i am always there for everyone but right now i am sorry to say but i need to concentrate on me. I just dont have the energy to worry about everything at the moment, that is apart from someone so very special to me who i saw break down in tearslast night, it made merealise how much i hadnt been there fo her and how i need to be, she is hurtinginside and i hardly noticed, i feel awful and hope she knows i am always here for her no matter what.
I have now idea where to start to change things so i think its going to be hard but i guess only i can change things so i need to do somehting.
I think i need some timeout so this may mean getting away from things for a few days, if i couldlock myself away from everyone and have no demands for ajust a coupleof days it may help, the only problem with that is i cant do that due to certain commitments, maybe running  away is an option, the only thing with that is that i might just keep going. Need to think about that a bit more i think. I need to talk to someone so i think the counselling is a good idea. I also need to start eating properly, eating is never fun when you choke on it so i think i have been eating less and less which in turn means less energy so i amgoing to phone dietician on monday and get some advice about it.
Oh well pretty pointless and rambling post i think and to be honest lets hope things turn a corner soon.

So Tired!!!

Oh my god i need sleep before i actually go in sane!! Icant believe my manger sent me to have a sleep today at work as aparently i was walking around like a zombie! the stupid thing is i actually managed to sleep for a whole hour which was fabulous and now i cant understand why i cant sleep at  home
it is just silly.
We have a really busy weekend at work with the fete this weekend and i am kind of thinking it might be best if i stay away as i dont want to be no use by turning up andnot being able to fully functio n and then get frustrated over what i cant do, we will see i guess, if i couldjust sleep tonight that would help im sure. There must become apoint when you are so tired that the body just has to shut down!!!
Oh well i guess i should try and get some sleep if nothing else!!

Night night all!!
xxxx

lack of sleep, nightmares and generally things are awful

Its been a hard few days and really need to get it of my chest so i thought here may be a good place.

I havent slept since my last hospital admission and yesterday got to the point of being so tired that i could not function, ended up in tears and although i tried to hide it, i didnt do a good job and did speak to someone.
The problem is that since my last admission i havent been able to move on from being extremely unwell and needing so much medical intervention and its like having flash backs of the whole situation as soon as i close my eyes. I also didnt feel that unwell that day and so now question how i didnt notice and let myself get so unwell.
I stillfeelrough and things are settled completely but i dont want people to think that i am over reacting or not dealing with it.I guess the truth is i am not just scared but terrified by my currecnt situation and cant move forward. I find it hard to talk ti people and i know this hurts people but its becomes hard and emotional. I think i just need to get a grip and they say time is a wondeful thing.
I did speak to my gp yesterday,who gave me something tohelp me sleep for two nights but after that he says if it is no better then i need someone to talk to professionaly as it willjust be masking the problem. He was really nice and said that it wasnt helped by the fact that my potassium levels were very low and alsobloods a little odd, so fingers crossed if we can get that sorted things will be better. I am not sure what wil happen at the moment i guess we will see.

Enough rambling now and really need to see if i can get some kind of sleep before another busy day tomorrow.!!!

Been a while since i updated this so here goes!
After my last update things went from bad to worse health wise, i was seeing nurse daily and then on the thursday felt awful,couldnt seem to put my finger on it as breathing wasnt horrendous but wasnt right and just felt awful, ik kind of though things werent to bad as i saw the nurse inthe morning and she didnt seem overly concerned anyway after lots of consideration i  got kate to take me to a and e and as soon as i got there things went down hill fast, walked into a and e and then within half an hour was in resus where i spent the next 6 hours with doctors rushing around me trying to stabilise things, i saw the itu doctors far to much for my liking that night, it was strange really as i felt like i was watching from a distance although it was hapening to me!. I kind of wish i had the energy to ask for someone to call someone to stay with me as i was quite frightened but i just didnt want to make a fuss and had no energy to reel of phone numbers etc. Anyway eventually things were manageable and i ended up on respiratory ward where i stayed on iv drugs over the weekend. It was a hard weekend with things very up and down and doctors telling me i was lucky and i shouldnt leave things so late in future as i was extremelly ill on admission, the silly thing is i didnt feel that bad, i guess you just get used to it and the warnign signs are harder to see, i am thinkging that on that thursday if certain people had been at work they would have noticed and maybe interved,not that it is there jobor my expectation but i was really muddled that day and felt confused allday.anyway i  Finally convinced them i waas better and ready to be discharged on tuesday although they wanted me to stay till friday but now way was i staying for no real reason, so  home i went and since then things have been ok, im tired beyond belief and breathless on exertion but nothing i cant manage
When i got home it waas the 3 years to the day when kates dad died and i was trying to get out early to offer her soem support but it was to late, i hope she knows how much she means to me and how much i care, she is very good at hiding it but i know deep down she is hurting!!
Some goodnews when . I got home hough i got my OU results, i got a distinction so i was well impressed considering i had been so unwell before the exam and didnt revise as much as needed. I now need to concetrate on the next course and see if i can scrape though, fingers crossed.
Work is a different subject i am not going to say to much as its best not to, i really want to carry on working but it seems some people are trying to make it difficyly, what will be will be i guess.
I have been back to southampton and they have agreed that the surgery i need is definetly what i need and they are going  to help me push for it. so i am waiting ot hear from them and until then i am  being so careful what i eat. i am concentrating on yogurts and cereal as that iss ok, i have also decided that i need to try and get fit as the surgery will be a strain on my body anyway so i need to be at my best for it to be a success, so i amthinking about going swimming more regularly.
I had a busy day yesterday, dad got married to von and i hope they are really happy together it was very strange watching them get married but i am happy that they have found one another and are happy together.  in the evening it was gills bbq and it was a lovely evening and nice to get out for a few hours,it made mea realise that i should make the effort more as i always avoid going out, i think it is the effort it takes as when i get there i always have a good time.
Today i am officially cream crakered!! my body is physically knackered and emotionally im not in a good place, i think i have just had a busy week so today i am having a rest, pjs are staying on and lots of painkillers have been taken!
I have a plan for the week which includes getting a doctors appointment to see the nurse tomorrow and see about staying on higher dose steroids a bit longer and getting a general check over as things just dont feel right! i am  looking at joining the gym as a member to make swimming a little cheaper, we have the summer fete this week at work so going to bebusy sorting that out.
I am determined to not let people annoy me this week or make me  feel quilty for not being able to do things i can only be me and if people dont like that then i thnk they are going to have to sod of!!

Oh well not a lot else to say i think a nap is in order.

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!!

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.
So...here'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!!!

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

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!!!

 

annual leave wahoo!!!

Today is my first official day of annual leave, the sun is shining and i can sit in the garden whichis lovely.
I need a rest as still got pseudamonas and mrsa infection so hopefully with new antibiotcs and lots of rest i can get rid of it, if not then i am going to start drinking bleach!!
So far today have done a few jobs for grandad and now sitting in the garden is fab.
Waiting for doctors to phone with latest blood results as coughed up someblood over the week so may need some blood later, fingers crossed not as i dont want to go to hospital today actually not at all this week!!
I just wish you culd  put life on hold for a week and at the end of it everything be  ok, im guessing that isnt going to happen but i can dream.
I have to see dietician on wednesday and not sure how i am going to explain losing eight pound,woops!!! I thinks its ok as still obover what i should be so thats going to be my argument.
I amhopefully going to peters on thursday with kate so that will be lovely although i get so tired easily these days so going to rest up for the days before.
I am still doing my other ou course and the first assignement needs to be in this week so going to be spending the week doing that as not really started it yet, im sure i will get there in the end, although i kind of dont see the point at the moment as long term im not sure what is going to happen,i kind of think i might as well finish this one as ive started it.
Well enough waffling for now, im of to have a sleep, well i was going to but uncle stephen has just found a snake in garden, aparently it was huge, im not so sure but he wants me to look for it, he is supposed to be the man aparently!!!!!!!
Well by for now!!!

Well i finally made it to my weeks annual leave! i need a week of badly to have a rest so thats what i plan to do along with all  the other things i need to do.
I think i proved how much i needed this week of after fainting on my manager on thursday, she is so lovely and i amnot sure where i would be without her, she is so supportive and really understands my situation, i am really hoping that this week of will give my body the rest i needed.
Tonight things are again not so good, my sats are low and i am so cold, never a good sign, so i am hoping some o2 and nebs will help and of course an early night.
oh well nothing else to waffle about so might add something tomorrow.

night night world!

Just because i cant sleep i thought i would update here, so much has happened this week and i dont feel like i want it broadcast to anyone at the moment, everyone that knows has been so lovely and understanding. Things are tough and i need to deal with them before i can deal with anyone else, that isnt fair i know but its just the way it is at the moment.
I really should be getting to bed as i have to be up for a doctors appointment first thing, i am only seeing nurse and she is brilliant but not sure she is going to be very happy as peak flows well below allowed and chect infection not improving, bloody bugs need to sod of im nored  of them now.
This week is a busy week at work as its cruise week, everyone is being really supportive and helpful which is good and then next week i am  on a weeks annual leave which i need badly as i have loads of ou work to do. i have fininshed my first course now and the examwas no where near as hard as i thought it would be.
well i am waffling now, so must be the oramorph kicking in, time for bed for me.
night night

In desperate need of a rest

well another week of things going from bad to worse, last week i was having lots of episodes of coughing up blood, although i tried to hide it i managed to not let on as to how bad it was that was until friday when i felt so yuck and felt like i was going to faint all day, spoke to the nurse at hospital and she arranged an urgent appointment with consultant, i think he was shocked by what he saw, not helped by the fact i threw up all over him!! he decided that it was probably an infection but he is worried about starting more antibiotics as the bugs are allready so multi resistant, i had allready had blood taken so he wanted to check levels etc, he offered me admission and of course  i said no!! i promised to go strainght home and rest, and any problems he was the oncall consultant this weekend so go in if any problem. well i went back to work and finally went home around five, by that point i had another phone call from hospital to say i needed some iron tablets and more blood tests on monday. He seemed to think the vitman d i was taking maybe part of the problem although he wasnt sure.
Well anyway by the time i got home i was  absolutely exhausted and just managed to do some housework before collapsing on the sofa. I managed to dose up on some painkillers as the pain was unbearable and started using nebs to see of that would help.
Anyway saturday was not to bad and managed to do bits and pieces, fingers crossed things were getting better, well that was until last night when i honestly thought i was going to die, i have never been so sick in my life and was aspirating everything i ate or drunk so phoned the on call doctor who was lovely and luckily i knew him and he listened to what has happened and decided that he could give me some anti sickness drugs and more painkillers and i had to go to the hospital in the morning to be checked over, anyway had the best nights sleepever before going to the hospital and having bloods checked, chest x ray etc, the decided that i needed some potassium and some blood as they werent happy they also said lungs were showing infection,consultant was on call and he came to see me and he agreed to start somemore antibiotics as the sensitivities were back, he also wants me to see dietician on monday as wants me to only have thickened fluids due to the aspiration, he is not sure what can be done and is going to discuss things with gastro team and southampton as a matter of urgency. He sorted everything out so home now, he probably wanted me to stay but not much point as he was honest and said not a lot he could do,he is goingto phone me on monday to see what is happeneing and anything happens then i will be going back in.
Well thats the whole story so far and now i need to take things easy i am sure people will think i am being lazy and i am expecting the comments at work allready saying that i get away with murder! i wish i did, i just need some time to fight this  but then again im not sure if there is much point any more it all seems  like a lot of hard work.
i also need to speak to kate, she know what is going on and im am being very honest that things are bad im just not sure how much this is affecting her, im sure it must be, im just not sure what to do at the moment.
i am sure things will get better in a few weeks or at least i hope they will and i just hope people are understanding in the mean time, i dont want to waste my little bit of energy that i do have fighting with people, people are welcome to their opinions but i just hope they keep themselves to themselves,i guess the next few weeks will tell me who my real friends are.
Oh well bed for me before another week begins!!

Today i swear im not doing anything!! I love that song and today that is exactly what i am doing.
I am so tired that i cant even get out of bed, not helped by lungs hating me and body generally knackered.
Bloody chocked on my chinese on saturday and i think i have aspirated it!! this is becming a joke now and soon i wont be able to eat anything, last night managed some cottage pie, mushed up and oh do i feel sorry for people that have to have pureed food!! its gross.
Oh well decided to take today of, or more my lovely manager did, the text said take the day of anf do what i am told so that is exactly what i am doing, hoping that one days rest means i can get through the rest of the week, i am so frustrated by what i cant do at the moment but hopefully things willo think get better,  I am starting to think the vitamin d was helping as i was feeling better when on it and now feeling yuck again, hopefully bloods will be better this week so i can have it again. well enough whinging and whining, i need to start revising for exams soon so may start some prep today and then atleast i have made a start, but before that i may go back to sleep for a little while!!

knackered!!

well today it seems my body has officially given up on me! i am knackered after spending yesterday doing loads of gardening,t i am sure it will be worth it in the end but oh my god im tired! that wasnt helpedby taking two different types  of pain killers that made me all itchy so no sleep at all!!
definetly a pj day for me today and sofa surfing!!
I really need to start revising for exam soon as feel very unprepared but i guess i will get round to it eventually.
Thank goodness by best friend brought grandad a dinner round as i am so not cooking, thats the problem with never being hungry, you never want to cook and then eat. the weight loss is fab though so im not going to complain just the lack of energy is a slight problem!
oh well not a lot else to add so back to my sofa surfing and maybe a little sleep!!!

when will things go to plan!!!

Well another busy week and another hospital admission! Things went down hill from a cold quite rapidly! All was going ok until i went to gp for some antibiotics but the next thing I know I'm in an ambulance and being rushed to hospital! Got lecture from ambulance crew about leaving it so late but I honestly thought I was ok! Obviouksy not! Anyway once drugs were going in system things improved and after some very careful monitoring by the itu doctors and me pleading them to not take me upstairs!! Anyway found out i have two nasty infections that need sorting out but it seems we have to wait until the samples have been looked at elsewhere so still waiting! Very busy week at work and the truth is as much as I try and keep up io don't feel like I can sometimes which is causing much frustration! I'm hoping it is a blip after the admission and things will improve! Been busy sorting the garden this week and fingers crossed the opening goes well!! Another thing that has got to me this week is the way I seem to be pushing people away! I'm not doing it on purpose I think I'm scared of hurting people and dont want them to feel the pain I'm going through!! I guess things will sort themselves out and I need to sort it out I'm just not sure how!!
Saw the gastro team this week and they were lovely! They were very honest that the damage is bad and probably needs surgery however the risks are high and lots of potential complications so not sure it is even possible! I guess we will see what happens!! They did mention the fact that I have lost a bit of weight and whilst it's fibe at the moment as i can afford some he was concerned at how rapid it is so now got to
Go to
Dietician!! The stupid thing is i think
He thought i was starving myself and I'm not!!
Can't think of any more waffle and really need to sleep
Before my day if gardening!!!

Have been meaning to update for ages but life is just so busy I never seem
To have a spare few minutes! Anyway can't sleep tonight so here goes! The last few days have been horrendous, not breathing wise but pain wise! Breathing has been quite good and the vitamin d seems to make a difference that was un till they decided I couldn't have it last week because my kidney function has gone wrong! Apparently my potassium is now to low and until that goes up then no vit d! Fingers crossed this week it will be better but I'm not so sure as I feel yuck!! As for the pain, my chest now constantly hurts and seems to only partly be helped by painkillers, this weekend I completely over did it and am now suffering with the constant itching!! Oh well I guess it is a catch 22, itching or pain!!!!
In general I just feel like I want to hide away from the world and not do anything! I'm not sure why just everything seems to much!!! I feel bogged down at work and can't keep up with everything, not because the demands are to much more that I just can keep up! I'm not sure the answer really I guess see what happens! Inside I feel like I'm falling apart and slowly everything is being taken awAy it's funny how vulnerable you can feel!!
I need to think of something positive to say I guess! Oh well can't think of anything! I
Will next time I'm sure! If you are reading this and thinking oh she is depressed, I'm not I'm just facing facts that this is how life is!!!

busy busy week again!
somehting good happened  though i had a cold and htought i was going to end up in my second home but i didnt so something must be imrpoving. stillnot bad infection but it seems no amount of antibiotics are gonna kill it. Oh well see what happens i guess. Finally i am organising myself at home and work and i feel like things are settling into place, i just hope it lasts, the thing that worries me the most is that i am  expecting to much.
had a really horrible thing happen on friday and whilst i usually dont care  if people are talking about me i thinkpeople should be more careful, aparently i live and die work, well in a way they are right but i dont do it for the reason they give!! aparently i do it to creep to management, i can asssure you this is not the case, the real  reason is sometimes i am to scared to be at home, especially when i dont feel well. for some reason being at work makes me feel a bit better and knowing i have people around me that i trust makes me feel safer.
anyway tonight things are not good pain wise so have taken a bucked full of painkillers and gonna fall asleep in a minute, this probably makes no sense and i will do a better update when i feel more awake.

Post Created 23 Apr 2011 22:48:14

Enough Is enough!! I can't bloody sleep, cAnt bloody eat and am in agony! I seem to have hit a brick wall lately and cant move it!! I know I'm waffling and may be it's pain killer induced I'm not sure!! The not sleeping really bothers me as I'm so tired, I know this is made worse by not eating properly but I just can't and I can see how people stop eating! You just don't feel hungry after a while and the fear of chocking just makes it worse!! Dont get me wrong I do eat just not much and probably explains how I've lost weight but part of that I am pleased about ad it will do me good! As for the pain o guess I have to gt used to it and keep taking the pills!!
Well another day at work tomorrow and have a Hugh amount to do thank goodness Kate will be in as she will kick me out as and when need be!!
Maybe it's time to seriously consider hours at work! I do way over my hours every week but feel a lot is expected of me and the more that i am asked to do the more I struggle and then it becomes a vicious circle oh well
I guess time will tell!!
One good thing finally stopped throwing up it must be the vitamin d as only happens when I take it but guess I just have to persevere!!
Well enough waffling, must try sleep even if it is just a couple of hours!!

Another couple of weeks have passed and i feel like i have leterally not stopped.Had another appointment at southampton and was more of a catch up than anything else. He did sort out the vit d but that swas about it. Lung fuction lower than last time but i actually think things have been more stable well only one admission in 2 months which is a record for me.
Still coughing up blood which is annoying and seems to happen at the most inconvenience time, usually at work and then have to explain myself and ask for help. Thankfullt usually one of my closest friends are usually there to help mepick up the pieces however one day it all got to much and happened in a public place i ended up in tears and felt like i could not carry on anyway it was fine cleaned up and sorted and as usual you carry on. The eating is still a problem and am mostly put of eating now, fab for weight loss but not so good for energy levels which are non existant.
I also seem to be in constant pain and taking painkillers like they are going out of fashion!!
I have never been so tired as i am now but i just never sleep which is driving me slightly insane.
Things seem to get harder to cope with every day but some how you carry on i guess which i do and whilst i am determined to  get on with life i have to admit i would like a little break from the constan demands that i feel are on me at the moment. If its not running around at work it is running around at home.
I thought i was going to end up in my second home last week as peak flows were down to 100 and sats 78 but thankfully nebs picked me up, i think the weather changing didnt help and chest just thought had enough, also was trying to push myself to hard i think thankfully i have a wonderful best friends who made me see sense and eventually i gave in a had a rest, its funny but the more ill i feel the more i want to do stuf but when im fine i cant be arsed to do anything.
A so for work well it is so busy at the moment and i have a to do list as long as my arm, if i didnt love my job so much and if i wasnt so bloody stubborn i think i would think about leaving as i just cant keep up with it all anymore. I have the most amazing manager who is so supportive and seems to generally care about me etc and also have the most amazing collegues who help me out loads and also give me the kick up the arse i need when im not quite acting sensibly.
I really need to thank my bestest friend she has been my rock recently and whilst i say thankyou all the time i am not sure she really knows how much i appreciate her!!
I have become a little obsesses with my gnomes that i rescued, they were in a right mess but over time they are definetly looking fab, well at least it gives me something to do that is nice and relaxing, just wish i had more time to do it.

Well that was a load of waffle but who cares it got it of my chest i guess. Now to get on with my to do list i guess before work tomorow and for the whole week, may be i need a holiday!!!

really feels the desire to scream

Well it's been a while again but time just seems to run away with me! I had my endoscopy on Tuesday and can honestly say I won't be having that again! It showed loads which explains why I keep chocking it also seems to relate to other things! So that was one good thing but now I think I actually have a fear of eating!! Everytime I eat I feel sick and think I'm going to choke! Let's hope I get some answers next week when I go to Southampton!! Life seems really depressing right now and I can't seem to cope with the speed of things! Exhaustion is not the word! It's more than that I also can't be bothered which is another problem!! Lack of sleep doesn't help and there seems nothing I can do about that! Anway enough whinging Now time for bed and see what tomorrow brings!!

long over due update again!!!

OMG didnt realise it had been solong since i last updated this, so much has happened!!
Firstly i have had my southampton appointment at it seems there is lots of things that have been missed by the RBH, why was i not suprised!! .it seems i have very low vit d levels which is stopping me absorbing steroids well so thats one thing that needs sorting, still watiing for the prescription though as local hospital cant get hold of it and im not going back to southampton until the 13th april so lokks like i might have to wait until then. Also need a bronchoscopy as he said i have really bad reflux which is causing the aspiration and probably effecting my chest. He also changed inhalers added in new stuff and was just very reassuring and helpful. Things arent really any better and seem to be coughing up blood on a regular basis, which is kind of annoying and very messy. Also aspirating on food quite a lot so thats not very good. Other than that things remian there unsettled self bu there some hope of them getting a bit better.
Had a lovely holiday in tenerife with my best friend, it was fab, really relaxing and just what we bothe needed, only one downside, ended up in hospitak within days of getting back which has meant i now do not have a fitness to fly certificate so gonna have to work around that me thinks!!
Also been referred to occupational health so had to see them and it was ok, she say i am fit to work so thats pissed a few people of!! Not allowed to drive at work though as they are questioning sleep apneo so desperately trying ot get results of recent sleep study!!
other than all that everything carrys on as usual.
Have decided today that i can only be what i am and if people want more then that they are going to have to sod of as i cant be more!!
Now for the future well i have decicded i want to go to disneyland in paris obviously as that doesnt involve flying!! i also wont to finish my ou course and i am contemplating joing the gym as need to get a bit fitter, the only problem i am so bloody tired allthe time that i am not sure where i am going to get energy to go from but we  will see.
Well enough rambling for now and to bed for me as tomorrow isanother day and as usual i have a busy day planned!!!

another week over and another one begins!!

Another week over and another week begins!! i wish weekends were longer, i am so fed up with spending my whoe weekedn feelling rubbish because i have spent the whole week running around like an idiot.
Last week was not as bad as i thought it would be so that was one good thing.
people can be so cruel and i have realy learnt whi my firiends are lately i never though that people would use your health against you, i wouldnt care if they moaned about wbout my work or private life but this hurt personaly.
I am still having problems sleeping and it is driving me nuts, i keeep having nightmares and the worst thing is that i close my eyes and think i am not going to wake up, it is trully terrifying and i cant seem to get rid of it. i guess over time it will be easier, who knows.
i need to start making some decisions and keep thinking it is time for me to give up work or at least cut my hours, part of me would give it up tomorrow but the other side of me doesnt want to give in!! decisions decisions!!!
well one week until i go to southhampton and i can only hope they have some answers, i need something to be done, i once had a life! well enough moaning from me.
xxx

bloody colds!!

Well so far new year not going to bad! That was until I got another bloody cold!! Feeling really rough all weekend and now on maximum meds at home!! We will see what tomorrow brings as I have hospital appointment!! Getting really fed up with it all
Now!!
On a more positive note I am finally up to date with my ou work! Finding it harder than I thought but will get there eventually!!
Enough gabbling from me time for bed before another busy week ahead!!!

new year!!

Well another year over!! Not been the best but this year has to be better!!! So whilst I am not really into the whole new years resolution thing there are done things I am gonna change or do!! So here goes my list:
1. Get up every morning and be thankful fir what I have!! Go to bed at night with great thanks for all around me!!
2. Start being a bit more honest about how I really feel!! A smile can hide a thousand troubles but it doesn't make them go away!!
3. Putting myself first!! People are going to have to start seeing me for who I am, I can be no more than I am!!
4.stop hiding how unwell I feel sometimes!! People may look and stare but is using my drugs in public really something to hide!! People cab comment but from now on that's up to them!!!
5. Ask people for help when needed and not struggle on for the sake of it!!
6. Tell my friends and family I love them everyday!!
7. Take extra special time to be there for my best friend and when she's hurting I need to be by her side and we will ride the storm together!!!

Well that's a start!! Now for the normal onei will;
1 lose two stone
2. Start saving (not sure what for but we will see)
3. Finish open university course
Etc etc etc

Now think the first thing I need to do is tidy my bedroom!! This could take me till next new year!!!!