My blog is moving!!!

http://wheezygirl.wordpress.com/ this is where my blog has moved to as it is easier to manage x

Another sleepless night!!

Today has been horrible I Have never been in so much pain! My lungs hate me and I feel like I'm going further downhill by the minute!! I just hope it's a blip and tomorrow I will wake up like new!! I have taken all the painkillers I can and Every breath hurts!! Tonight me a my Neb will bring best friends as it does make breathing easier! I just need to get through this week then I can be ill as I won't be letting anyone down! I will go to the doctors tomorrow if needed but I think they will send me in so I wi'll avoid them as much as possible!! Oh well back to watching nativity on my iPad and try and get some sleep!!!

All I want for christmas!

I dont want a lot for christmas?
There’s just one thing I need
I don’t care about the presents
Underneath the Christmas tree
I just want some healthy lungs of my own
More than you could ever know
Make my wish come true
All I want for Christmas is…Health
I don’t need to hang my stocking
There upon the fireplace
Santa Claus won’t make me happy
With a toy on Christmas day
I just want a healthy body of my own
More than you could ever know
Make my wish come true
All the lights are shining
So brightly everywhere
And the sound of peoples Laughter fills the air
And everyone is singingI hear those sleigh bells ringing
Santa won’t you bring me the one thing I really need
Won’t you please bring a cure for me…

I stole this from the internet but it is like my situation!
If I could have one Christmas wish it would be to have a healthy body and definitely lungs that work!! I would give up any presents for that!!

Busy week

This week is definetly the busiest week I have had for ages and I am definetly feeling the effect! Work has been unbelievably busy and next week it is even worse!!
My health has been its normal bad self this week not helped by the fact I am so tired!!
I have just hat back from the surgery and have strict orders for the weekend!! I have a really swollen knee and ankles which apparently is water retention so apparently I need to keep the legs up! Lungs are still infected and blood tests no better so hopefully yet can get an urgent appointment for Southampton to see if they can help!! All this has to happen at the busiest time of the year for me!! I was very honest with the gp today and explained that I feel really unwell to the point where every day is a struggle!! He was really good and said that he is hoping this a blip but also that I may have picked up a flu type bug which has knocked everything out of place, my immune system is so rubbish I wouldn't be surprised!! The instructions for this week are pjs, duvet and sofa oh and extra meds before review on Monday and if lungs and swelling is not better then I will more than likely be admitted for I'v antibiotics!! Fingers crossed things improve as I have to much to do at the moment!!

Smugly has been poorly this week as Well bless him he looked so poorly but today he looks better so hopefully he will be back to his normal self in no time!!!

Oh well I need to summon u some energy to go and get grandad fish and chips then to pick kae up from work!!

The morning after the night before!

Yesterday was our work christmas party and it was really good fun, I wasn't drinking as I didn't feel like it, and at one point I wasn't even going as I couldn't find anything to wear etc! Anyway I went and I'm glad I did! I even managed to get up and dance, luckily I'm good at hiding how rubbish I feel and I was determined to not let my lungs effect the night! Today has been horrid and very painful! I don't think people realise how tired I get and how it takes me so much longer to recover! Oh we'll ill get there!!

Recently I have been really bothered about how people see me and I'm not sure why, I know who my friends are and that is all that matters! Yes I have health problems and whilst im not going in to it they affect my life everyday in more ways than you can ever imagine! yes I have a motability car and yes I have a disabled badge! I have these because without them I would not get around, there are days when getting out of bed is hard enough let alone going anywhere. I rarely use my blue badge and if I do it's because I really feel that I need to! People seem to look at me and make assumptions which I guess is because they don't know much or are mis guided! Someone the other day said that a long time ago she over heard a conversation about me and people saying I wasn't that ill as I still work etc, well that is due to pure grit aNd determination, I am stubborn and refuse to give it! I was so hurt when I heard this and wish people would put themselves in my shoes for just one day and see what it's like! I'm not asking for sympathy I just would appreciate a little understanding! Oh we'll rant over ill shut up now! I just wish people would think about what they say about others before they say it! I don't actually care what people say about me behind my back but I would rather not hear it. I just want to say this ant aimed at anyone it's just a general feeling I have after some comments I have heard recently! I know that I am being over sensitive but that's the way I am and I can't change it!!!

Very frustrated!!

Today has been a horrible day and its all because I am so frustrated that my bloody body can't just do as it is asked!! I have been snappy, grumpy and tearful which is not how I want to be! I know I am a bit pre menstrual so that has made things worse!
Today even simple things like opening the door and driving to work have Left me in agony and out of breath! I remember the days when I could work 12 hour shifts and up to 60 hours a week, now I can barely manage the hours I am contracted for. This time of year is so busy for me and I know I won't get through it at this rate as I am being pushed further and further down and to be honest I have no energy to fight!
I am going to try and have a lie in tomorrow and start a bit later, that way I might feel a bit better or I bloody hope it does! I am on maximum drugs so there is no way of changing them to see if that helps!!

Oh well whinge over, tomorrow is a new day and I just need to get through it!! I think I need to go and watch happy feet 2 to cheer myself up!!

A bit of a mess

After spending the weekend doing not a lot well apart from Christmas shopping and putting up Christmas tree decorations and doing lots of odd jobs I'm not sure I actually feEl any better!! I'm trying to convince myself That I do!! The reality is that tomorrow I am back to work and I have got myself in a right state about it!!! I love my job but Its so busy at this time of year and I know sooner or later im going to end up in hospital  so I'm going to let everyone down!! I have no idea what to do for the best I just want to hide away from the world at the moment! I wish everything was so different or my body would just give me a break!! Oh well I guess I need some sleep before my busy week begins!! Night world!!

when will things change!!!

I am wondering when my life becomes easier! I have yet another chest infection and Had numerous drugs today so that I can avoid admission, we kind of have a plan so fingers and toes crossed that it works!!  I have the next three days of so hopefully that will give me some time to feel better!!

one good thing! last night I went to see nativity 2 with Kate,  Pete and Scott and it was fabulous I haven't laughed so much in ages!!

oh well I'm tired and i need sleep so I'm of to try!
xxx

new day

Yesterday was a bad day in many ways so today I have woken up after thinking about it all night and decided that things have to change!!! yesterday I didn't feel well so that didn't help however thats not unusual!!! Pete annoyed me as he was working till 4 then he text me to say he would be later! so I waited all day to go shopping and then went on my own anyway, not usyally a problem but as my joints hurt so much it was agony!! he was supposed to be at football today whichwould of meant he would of been around tohelp at home today! he then says he is going to work today which is ridiculous as he had already covered!! I know he Is trying to Make a good impression at work as he wants them to keep him on  after Christmas I understand that!! what I don't understand is he told me they had already sorted his contract out!! so who knows what is going on!!! Then the icing on the cake was that he went out last night apparently for 10 minutes which turned into an hour and a half! I know that pete needs a life and i actually think he has quite a good one!! i know he is used to having his own place but that didnt work out and when it all went wrong I bailed him out, in ret urn he Is throwing it all back in my face!! i look after chestw everyday and i love him to bits which i have to admit!! the  problem is if I say anything to  pete he will use chester  to upset me more! i just wish sometimes he would ask and not presume i can have him all the time! i dont mind taking him to work  as the residents  love him and so do the staff just sometimes  i find it hard to get on with things becauae i have to watch him all the tIme!! he has a life I gave Mine up a long time a go and feel like I am only here to cook , clean etc etc!!! I also hate the way he had become so selfish and speaks to everyone like a piece of shit!! if I hear him speak to grandad like he is a piece of shit one more time I will say something to him! I'm surprised he has any friends the way he talks to them! he seems to be obsessed with being gay and puts on this act!! he needs to get a grip as he is the only one that has a problem with it in my eyes!! oh well rant over!!  another situation annoyed me, its reallycomplicated !  I'm not going to whinge anymore as it is boring!!
so I have decided that from now on I am not going to be walked all over and made to feel like I am only  here to cook, clean, do washing and generally look after everyone!! I know its my own  fault as I don't find it easy to Say no! I also think that people have no right to hurt other people's feelings!! oh well I ha've some DecIsisons to make about what I'm going to do! I think I'll have some breakfaSt first!!!

A mixed week!!!!

This blog seems to be me always moaning and groaning and to be honest I don't care! At least if I do it here people don't have to listen to it all the time!!
This week has been very mixed, good in some ways but very bad in others!! Lets start with the good I have achieved lots at work, things have been finished, christmas organised and generally I am more organised than I have ever been. I know it sounds sad but at least if I end up poorly or in hospital everything will still happen and I won't feel so guilty! I'm hoping that wont happen and I will just benefit from being so organised!! Now for the not so good part of my week! As you know from my last post I have been having severe pain in my joints and couldn't sleep or do much at all! Well I have no idea how I have got through a while week at work feeling like this, especially yesterday when we had a huge power cut and I ended up staying on all day and worked bloody hard! It goes with the job you can't walk out in the middle if a crisis no matter how horrible you feel!!
It seems the symptoms are down to retaining fluid around from steroid use! Anyone that would ever want to stay in steroids must be mad I would give anything to get of them they are evil and whilst they are life saving the side effects from long term use are awful, I could go on and on but I won't as it gets boring after a while!!
Anyway I am hoping changing some drugs and taking regular pain relief will help soon! I'm going back to the gp next week if no better to see if there is anything he can offers, I'm sure they can't but its worth a try!!
I was hoping this weekend I could do nothing but there's no chance of that! I sometimes wish people would give me a break and when they keep saying you need to rest they would actually let me. I know I am my own worst enemy and will do anything for anyone but sometimes I wish I could say no and not feel so guilty and then end up doing it anyway! I have half done the housework and sorted out my meds for this week so just a few more jobs to do which include washing, hoovering, shopping and a few other things! Oh we'll I think that's enough whinging for now so may as well pull my socks up and get things done! I think tomorrow afternoon I will have an opportunity to sit and do nothing! Oh no I will have to cook dinner and sort out other people I expect!!

Silently screaming!!!

I am going to silently scream on here!!! Aaaaarrrrrrrgggghhhhh!!!!!
That's made me feel a bit better!! I have never had such bad pain in my joints!!! Every bone, joint and basically any part of my body that can move hurts, I don't just mean ache I mean really hurt!! I have quite a high pain threshold but this is horrible! I am also covered in bruises which hurt!! I know it is probably the steroids I am taking but I have never had it this bad, I am taking maximum painkillers with still little relief! I am trying so hard to not go of sick at work as I have so much going on! The problem is I can't function without taking lots of pain relief but then I feel to doppy to do much! I actually don't know what to do for the best.
I think I have tried so hard to cover up when I feel like poo that I actually manage it quite well, the problem is people don't seem to realise when I sat I'm having a bad time that I really am!! My own fault I guess but I just wish people could give me a break from the demands that they make on me!! I'm whinging now so I will stop!! I'm not expecting to sleep again tonight but I do wish if there is such a thing as a fairy godmother that she will come and take away some of this pain or alternatively shoot me and put me out of my misery!!!

Another Sunday!!

Well it's Sunday morning and I have been woken up by smugly with one of my socks in his mouth!! I think he tips trying to tell me that are going to work, bless him I need to teach him about the weekends!!

Have had a really busy week as last Sunday I have rememberance day balloon release at work which was brilliant! It seems such a fitting tribute!!
This week I have been really busy with one thing and another! I did a training day at work which I was so nervous about but it was actually ok! Then on Friday was children in need! We all went to work in our pjs which was brilliant and everyone had a great time!
Health wise I'm tired but my lungs are behaving them self for a changes! I seem to have swollen legs and covered in bruises but I think this is just down to long term pred which is bloody evil! I keep thinking I want to try and stop it but I know I can't really as my body would not cope!! I wish I was never started on it long term as the side effects are awful and I hate it!! I am still trying to lose weight but it just seems impossible, it is so frustrating !!!!

Life in general is ok I seem very radial irritated at the moment but I think that is just general people saying and doing stupid things! One of my close friends really upset me on Thursday with something she said and I can see her point but she wouldn't listen to my side of what I was trying to say!! It all seems a bit trival now but like I have said many times before 'people will forget what you say, people will forget what you did but people won't forget the way you made them feel'
Kate is poorly and I worry about her , she has actually listened to me for once and taken a day of work, that has to be a first!! Hoping she feels better soon!!

Home seems like hard work at the moment with one thing and another, I wish people wouldn't tell grandad things that they know nothing about as it just causes him to moan and us to have to put up with his mood, I guess some people just like to try and stir up trouble, personally I couldn't be bothered!!

Oh we'll before I go of on a rant I think I need to leave it there!! Me and smugly are having a day at home doing nothing!! Apart from the ton of paperwork I need to catch up on but at least I can do that on the sofa!!!

Finally a better end of the week!

After weeks of feeling really poorly with no energy and generally feeling yuck, the second part of this week i have actually felt better,i just hope it lasts. I have had a really productive week at home and work so thats good. At the beginning of week i felt like things would never be any better and that i just had to get used to the way things were, im not sure if things have changed or is it just i have changed my mental attitude about things, who knows. I am getting a bit fed up with people using me but then again i am letting them do it and i need to tell people no! easier said than done i know. I have a busy weekend planned as i am trying to get organised with lots of things that are coming up. Oh well i just wanted to post a positive post for a change as this blog was becoming quite negative which is not really like me!

Unsettled!

Not sure how I feel tonight, unsettled is the word I think!
My lungs are behaving much better and I have certainly had a nice restful week, I think I am worrying about returning to normality next week! In looking forward to going to work in one way but dreading it in another! I know everyone feels like that but today someone openly asked me if I was capable of working full time, of course I got all defensive a said yes! Deep down I'm not sure though! My job is very physically and emotionally demanding and I have to admit I find it hard but at the same time I work as part of a great team who back me, I am always thankful for that! I have the opportunity of transferring roles in the company but the new role is not me at all, I just wonder if sometimes we have to take a direction we wouldn't usually take!!
My pain levels are as high as they have ever been tonight so I have dosed up on every painkiller I have, that probably isn't helping how I feel!!
Oh well I need to try and get some sleep as I have a few things to do tomorrow

Night world xx

Home!!

Well I'm finally home after a fight to be discharged! I have heard so many stupid excuses in my life!!
I have seen the nurse at the surgery and she is really annoyed with the hospital! My discharge letter is appalling with no information on it! We had a long chat and she was disgusted with the ambulance crew who seemed in no rush to get me to a and e! The hospital were fine and did what was needed!! I can See her point about the discharge letter and how it tells no
One anything! She is also going to get one of the GPS at the surgery to get in touch with the hospital as it seems no one is taking responsibility for my care. St Richards leave it for Southampton, Southampton don't look after me when I am poorly so all in all no one is really taking responsibility, the nurse us the only one that seems to ever sort things out and I think that's a lot to put on her.
Anyway I'm home and that is all that matters, I'm ver battered and bruised but like my best friend said I am alive!!

I know have the week of as annual leave which I am secretly quite glad about! I usually go back to work straight a way and then get to tired again and poorly! Chester went for his op yesterday so I am dog sitting when Peter is at work!
This morning I have attempted to do the house work and it has nearly killed me but its done! Peter will be home soon so maybe he will treat me to lunch!!
Ok better go as dog crying like a baby xxx

Alone, pissed of and frightened!!

Yep you've guessed it back in my second home!! Things definitely didn't go to plan the last few days!!
On Wednesday I felt a bit off colour nothing particular just a bit sob and coughing so went to the doctors and lets just say I saw the most stupid doctor ever, I know him as he has been a locum at the surgery for years anyway he basically sent me of with a prescription for antibiotics and told me to go back to the nurse the next day so
On the way out I made an appointment and even the receptionist commented on how bad I looked,anyway went of home and plodded on using my neb every 2 hours, went to work and felt ok, so I thought the nurse would say just carry on, how wrong was I!!
She did the usual listening to chest, sats etc and put me on a neb,she was not impressed with the doctor the day before and said that she thought I should be in, as usual I did the usual I am fine lets try increasing pred etc!! She was having none of it as usual and she went to speak to a doctor and between them they decided an ambulance needed to be called!! The surgery were so lovely and she really did save my life it turned out! I was rushed to a and e resus with sats of 75 hr through the roof and resps of 45, a and e were fabulous and gave me all the drugs they could, I finally made
It to Amu and through the evening was not improving and tireing fast, the iTu team were called and they took over my care, on Friday I was placed back under the care of the medical team. With the outreach team monitoring me since! I fill much better than I did and have since been told I was five minutes from being intubated which is starting to hit home now.
The thing I am struggling with the most is not the fact that I have been so poorly but the fact I didn't recognise it and deal with it better. Today I was reviewed and if tomorrow I am feeling better with improved sats etc I can go home and rest as there is no
Chance if that here.! So fingers crossed that happens as it is so noisy in here.
Once again I have to thank
The NHS for saving my life!!

One thing that is really bugging me today is how much of a burden I feel to people around me, I wasn't going to write about this but as this is my blog I am going to! This isn't aimed at anyone it's just general.
I feel like such a burden with one thing and another, being ill all the time must annoy everyone around me, they can't rely on me for things and whilst I try not to let people down sometimes I can't help it! I don't know if people really understand how tough things are sometimes for me and I don't want sympathy just some reassurance that they understand I guess. I am in hospital and I feel very alone, everyone is at work or busy and whilst I don't really need them to visit as I am so tired but a simple text would
Be nice to show they care. I guess I am
Being selfish in a way expecting things., I guess im just lonely, scared and pissed of at the moment and need some back up from people. I'm babbling now and going to be
In tears soon as I am so tired and I guess everything is just hitting home!!
Right time for a sleep I think
Xx

Alone!

It is so true that you can feel alone in a crowded room, that is how I feel at the moment and I don't know why!!

I have had the worse headache ever this weekend, apparently it is a migraine, I had no idea this could effect your speech or moving your arms! I have never taken so many painkillers that don't work!! I'm hoping it is gone by tomorrow as I am working and can't afford anymore days of.
I have a hospital appointment as well, I'm starting to feel like they are becoming more pointless as I don't get any further forward, it feels like a tick in the box for them to be honest!
Life in general feels like hard work at the moment so it's like walking through treacle!!!
I think I need to try and get some sleep before tomorrow

Bloody angry!!

This is going to turn into a real angry post so I apologise in advance!

This week I was supposed to be on holiday but am working a couple of care shifts to fill in! Over the weekend I had a busy week end but managed to do all that I needed to do! Yesterday I worked all day and whilst it was bloody hard work it was nice to be doing the job I love! It made me sad to realise that physically I can't manage it long term but I guess occasionally is better than nothing at all!
Any way today I have a day of and I made it very clear I was not getting up early and doing nothing! Well what a joke that was, the house looked like a bomb hit it last night and this morning it still does so of I go again cleaning up everyone else's mess!! I asked eye to do it yesterday but he was far to busy out with his friends and basically spending as little time at home as possible! Anyway it is done now and why is it that they want to help half way through which pissed me of more as everything gets thrown on my bed so that I can of course clean that up as well!! Anyway as usual pets acts like the selfish individual he has turned into and cares about no one but him self!! Enough whinging for now as I know have to do the washing and shopping otherwise grandad won't eat tonight!!

Hope everyone's day is better than how mine has started!!!

Feeling used!!

I haven't updated this for a while, life has been so busy and I have had a horrible cold that has taken its toll!!

I know this is a sad thing to get excited about but so far I have not been admitted to hospital because of having a cold and it upsetting chest!! Fingers crossed it caries on like this!! My chest is grumpy and it hurts like hell but I am managing it!

Life in general is hard at the moment. I am quite worried about several things and people and not sure what to do!
Me and Kate had planned to go away next week as we are both on annual leave, I feel like I have let her down as there is no way I feel well enough to go away but also financially I can't afford it! I think it will have to wait to next year, doesn't stop me feeling quilty though!!

I have another situation that I have no idea how to cope with, I feel really used by it and like I am only there for there own convenience, it's something I nee to sort out but not sure how at the moment!!

Grandad is driving me insane at the moment I love him to bits but he doesn't want to do anything for himself, this morning I really wanted a lie in, Peter has buggered of to work and I have grandad and smugly to sort out, one day I will actually get a lie in but today I guess not!!

Oh we'll I am whinging now so best I go and get ready to do the shopping etc!!

Bloody colds!!

Today I have woken up with a stinking cold!! Couldn't even lift my head of the pillow without my head feeling like it would explode!! I had to reluctantly phone in sick for work as I feel so horrid, feeling very quilty about it as I know they are so busy at the moment and me being of means I can't help them. Also had a phone call from doctors surgery to say they need to speak to me about recent sputum results I wonder what bugs I have grown this time!!! Oh we'll will find out at 5pm. I am desperate for this cold to not end up on my chest as I have a busy week next week!!!! I think it will though as my peak flow is already below 200 when it was 400 at the beginning of the week. I am trying to rest and do not a lot and remain in control!!! Enough whining as after all it is only a cold, I just hate the way a cold causes me so many problems.

I am worrying myself about other things at the moment, I have been so busy that I have hardly had time for my friends lately, a combination of eat , sleep and work seems to of been my days! I care about them very much and hope they know that!!

Yesterday I went to Birmingham fur our garden competition and we won!! I'm so pleased as we all worked so hard!! I borrowed Irene's dress and everyone commented how nice I looked! I am not the most confident person when it comes to getting dressed up but with Kate and Irene's help they did a good job of making me look coordinated!!
I am worried about a couple of close friends as they are working themselves in the ground and I am not sure what I can do to help them as I am snowed under myself!! Oh we'll need to think about that. Right must go as think I need an afternoon sleep!!

Sunday again!!!

Well Sunday is here again and thankfully I feel a hundred times better than last week! It seems I was given the wrong drugs which I'm known to be allergic to, so no wonder I felt terrible! Now I am on the right antibiotics and I think they are doing the trick. This week is a busy week as I have to go to Kent tomorrow and then Birmingham on Thursday and work in between! I have decided that today I'm not doing anything more than sitting on sofa with smugly as its to cold!! Oh well nothing else exciting to say.
Xx

living or just existing

The title of this blog says it all, i am feeling so rubbish at the moment and i don't seem to be able to do anything without being utterly exhausted. Im tired, in pain and have no energy.
I know i should be more positive and you don't have to tell me that there are people out there worse of me and whilst i know, it doesn't help very much with the way i feel at the moment. I wish i could put life on hold for a couple of weeks and not move from my bed!!

I have had this week of work and done nothing but still feel terrible, i know i have an infection but it needs to bugger of and quickly, I know this is just a blip and things will sort themselves as they have done before i am just not very patient. I am due back to work tomorrow but deap down know i should take the rest of the week as i am not well enough to go back, i guess i have allways put on such a front to everyone that it is harder to now say when i cant cope!!.

I have decided that if i dont feel better by tomorrow night then i will let the hospital win and i will go in as i am exhausted which isnt helping my lungs.

I managed to walk to kates earlier which is the furthest so far this week but when i got home i felt really poorly.
I have just finished watching a  programme about funerals and it was good, very inspirational!!

Oh well best try and get some sleep!!

New week!

Once again last night was another sleepless night, so this morning i decided back to doctors.

I was lucky i got to see the nurse that i usually see about chest so i managed to get a few things sorted.

She gave me some piriton for this bloody rash and said it could be related to the bugs that grew in my lungs a few weeks ago. She didnt think it was viral, she said it could be bacterial. She also listened to me moan on about how yuck i feel and how my pain is not controlled.

It was decided that more antibiotics are needed and also some other bits and pieces to make me feel better.

As for the pain we discussed some options but i decided that i would try regular oramoph and i am not working for the first half of the week so i didnt need to worry about being sleepy.   She told me not to drive as a mixture of the different drugs could mean i would be very sleepy. I am absolutely exhausted so i think some sofa surfing in pjs is going to be necessary for a few days. I know when i am unwell my body tends to need to sleep to get repair itself so i think that is what it wants to do.

I am supposed to be back to work in thursday but i think i might be having the whole week of now, i dont really mind as i know i need to do nothing for a week and going back to soon will just make things worse again. I will see what happens i think.

Smugly is being very soppy today and seems to want to curl up on sofa with me which is quite nice but it probably means later he will drive me mad. 

Oh well not alot else to say for now, i think a little nap is in order.

Busy, busy week!

Well what a busy week, and it is suddenly catching up on me!
I worked three nights last week, which gave me a good oportunity to catch up a lot which is good, I'm knackered now but thankfully I have the first part of the week of as holiday.
I am going back to the doctors tomorrow as I still have this horrible itchy rash and I feel lousy, I didn't sleep at all last night even though I took a bucket load of oramoph and antihistamines. Today I have not managed to do anything which is nice but I do feel lazy.
Fingers crossed the doctors tomorrow can come up with a plan, I'm sure it will include antibiotics which is fine as I feel I need something to help me feel better.
At the moment I feel like I need a whole week of doing nothing so I may just do that in the hope I feel better and have more energy.

Oh well I think I am to tired to type anything sensible so I will update this more tomorrow.

changes!!!

I have decided that this blog is becoming far to whingy with less and and less positive stuff in it. This was always supposed to be my journey about how i live my life and for me to have something to look back on to see how things have changed.
I have decided that this blog will continue to be my fight with living with brittle asthma and emphysema and how i cope with it day to day. I am going to start updating this from this point of view on a weekly basis.
I am also going to include a separate post about life in general as the two run hand in hand. I am going to start a new blog for my working life as i have a very interesting job and no one knows much about it.

Health wise things are not to bad, from tomorrow i am down to 18mg of pred which is fab as i am desperate to get the dose down to something as low as possible, i know it is unlikely to ever be stopped but there is allways some hope.

I am going to list my drugs just so that i have a record of them and then i can look back and see any changes over time.



ADCAL-D3 Chewable tablets TWO TABLETS DAILY
CICLESONIDE CFC-FREE INHALER 160mcg TWO PUFFS TWICE A DAY
CODEINE PHOSPHATE 30mg TABLETS TWO TABLETS FOUR TIMES A DAY AS REQUIRED
CITALOPRAM 10mg TABLETS 1 DAILY
DOXYCYCLINE HYCLATE 100mg TABLETS 1 TWICE A DAY
OMEPRAZOLE 40mg TABLETS 1 DAILY
FEXOFENADINE 180MG TABLETS 1 DAILY
IPRATROPIUM BROMIDE NEBULISER SOLUTION 500mcg/2ml ONE NEBULE 4-6 HOURLY
                                                                                                                WHEN NEEDED
NASONEX NASAL SPRAY 50mcg/dose TWO DOSES IN EACH NOSTRIL DAILY
PREDNISOLONE EC TABLETS 5mg and 1mg 18mg daily
RANITIDINE TABLETS 300mg 1 DAILY
SALBUTAMOL NEBULISER SOLUTION 5mg/2.5ml ONE NEBULE EVERY 4-6 HOURS WHEN
                                                                                         NEEDED
SALAMOL EASI-BREATH CFC INHALER 100mcg/puff 2 PUFFS AS REQUIRED
SERETIDE 250 EVOHALER 2 PUFFS TWICE A DAY
SINGULAIR 10mg TABLETS 1 DAILY
SUCRAFLATE 1g TABLETS 2 tablets 2 TABLETS TWICE A DAY
TIOTROPIUM SOLUTION FOR INHALATION 2.5mcg/puff 2 puffs daily
UNIPHYLLIN CONTINUS MR/TABLETS 200mg 2 TABLETS TWICE A DAY
DOMPERIDONE 10mg TABLETS          1 THREE TIMES A DAY
FERROUS FUMERATE 325mg TABLETS 1 THREE TIMES A DAY

 OTHER ANTIBIOTICS AS NEEDED AND ORAMOPH AS NEEDED


Symptom wise today i have o2 sats of 93%, peak flow 300 which is good for me.

I still have an irritating rash which aparently is viral. I was started on clarythromyacin last week as my sputum sample showed staph. I have finished them now and back to doxyclyclin so we will see if the rash improves.

All in health wise things are not to bad so i would like them to stay like that for a while as i have  a busy few weeks ahead!!


In normal life this week a year ago i was at strictly come dancing and it brought back some wonderful memories from when i was lucky enough to attend with Kate. It really was one of the best nights of my life. When i think back to how ill i was last year i think things have definetly improved so i think i should look at that as quite positive.
It was grandads birthday last week, he was 86 and as much as he drives me mad i love him very much and would be lost without him. We didnt so much for his birthday this year as we have all been so busy. I dont think he minded and i have promised we will make it up to him.

My grandad!!


This week i we had some upset over smugly, i thought at one point i could not take anymore of the arguments about him. I love him to bits and cant bare to part with him, even if he is naughty at times.






I have changed quite a bit since he moved in, i think i am now very soft!!! oh well i think it is for the better.


Oh well i think that is enough of an update for now.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Friends

I really do have the loveliest friends in the world who I rely on far to much. Everyone knows Kate is my rock and does more than I can ever thank her for. I have many other friends who I mustn't forget as they are just as fab. I wish I could do something to thank them but I'm not sure what.
During this week I have been so tired and on Thursday I ended up in tears where I was so overwhelmed, luckily Kate stepped in with some advice and a nice hug and made me realise things weren't that bad I just need sleep!!

This time last year I was at strictly come dancing and it was the best night of my life, I had such a fab time and will never forget it, I was thinking how things had changed since then and I guess in a way things are a bit better or maybe I have just got used to the way things are.

Memories are a fabulous thing and I have many that I treasure!!

Magic wand needed!!!

I am having a blogging session as I have so much on my mind! One thing that is bugging me at the moment is my diet, I try so hard and still don't loose weight, this time last year I was a stone lighter and now I feel like I am back where I started, I know the drugs i m don't help and the fact that exercise is getting harder and harder but I really want and need to lose some weight and just don't know what else to do. I know everyone wants a magic wand but I really need something. I keep thinking if I could just get of steroids it would help but that seems unlikely as as I have been on them for years and years! Oh well not much point whining about it as that ain't going to help!!

Do the drugs work???

I am Updating this after one of those nights where I just couldn't sleep and I don't know why.
I Started some different antibiotics on Friday and it seems they interact with another drug I take so I have been feeling really sick and quite agitated which is not a nice feeling! Hopefully now I have stopped one it will pass quickly! I seem to be taking more and more drugs and I question whether any of them do much!

Morning drugs

Seretide inhaler
Circlesonide inhaler
Tiotropium inhaler
Theophylline
Pred
Fexofenadine
Citalopram
Adcal
Esomepraxole
Domperidone
Sucraflate
Doxycycline
Ferrous fumerate

Lunch time drugs
Ferrous fumerate
Domperidone


Night time
Circlesonide inhaler
Seretide inhaler
Theophylline
Sucraflate
Domperidone
Ferrous fumerate
Doxycycline
Ranitidine
Motelukast

And that doesn't include nebulisers, rescue inhalers and pain killers!

I have to wonder what half of them do but I guess we leave it in the hands of our medical teams and trust them that they do work!!

going round in circles!!

Another day full of rubbish! I know have so much on my to do list I don't know where to start, not helped by the fact I am so bloody tired I can hardly keep my eyes open.
I seem to be going round and round in circles with some things and no answers at the end of it.
I am definetly not happy at the moment with anything and I'm not sure why., I am lucky I have people around me that I care but I don't seem to be able to let them in at the moment and help me.
All I want to do is run away and hide at the moment which is not possible so I am going to have to get on with it.
Oh well I think I need to go and try and do something productive before I collapse on the sofa.

ARGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!

not having a good few days. Part of me wants to scream, another cry and part of me wants to run away. Neither of these will change anything but maybe it would make me feel better.

I feel utterly used at the moment in lots of parts of my life, i have always been the caring type but think some people just take advantage of that and in the end they take the piss. It doesn't matter who is doing this, it is my own fault as i have let them do it and now i am not sure what to do about it now. I will always help anyone and i ask for nothing in return but sometimes i wouldn't mind if people could just consider my feelings. 

I am exhausted beyond relief, my body just doesn't like doing much but my brain wants me to.

I am also in a lot of pain and it seems that i have lost control of it and now its harder to gain again. I feel myself heading for an admission as my lungs hate me, i don't have time at the moment so they are going to have drag themselves out of there strops, and respond to the drugs quicker.

I have just started catching up on some jobs i have been working on for ages, as usual a load more turn up and need doing. I am trying so hard to keep on top of things but there always seems to be something more important to do. I need to try and get into work early on a couple of morning this week so i can get some things done, its convincing my body that it wants to get up early that is the problem.

Oh well i think i need an early night so i am of to land of nod!!

Night Night 

life, death and the future!!!

I have been thinking more and more about the point in this blog and reasons for it,
This blog has always been a way of me sounding of and putting my thoughts on paper, its no meant for anyone to read necessary, its more for my own way of getting things of my chest! If people wish to read it then thats fine, im sure people read it and think i am always moaning and groaning, i think it is a lot of moaning as i tend not to moan in day to day life so this is the only place that i do.

In the last two weeks i have been to four funerals, all people through work and it is sad and i feel terribly for there families and friends but such a happy release for them, i think the greatest pleasure in my job is caring for people in the last days of there lives and being such a part in such a distressing time. They always say you mustnt get to close but its hard as your caring nature takes over. death seems like such a waste of life but i guess it is just the next thing and i honestly believe that after death is whatever you want it to be, no pain, no suffering and around the people you love.
I found this lovely poem today about death and i think it is perfect
 

I think going to funerals also makes you very aware of your own mortality and your family around you, i feel very quilty that i dont see some of my family, mostly through lack of time and always being busy and really need to make much more of an effort to change this, life is to short and you never know when you wont have the opportunity.

On a happier note chester has completely changed things for me, as much as i hate to admit it, he has turned me soppy and soft.




He gives me a reason to get up in the morning and has the ability to make me laugh all the time, he is very playfull and as much as he is bloody ugly i do love him. I ttell him all my problems and although he has no idea what i am saying he seems to understand and gives me the look!!! He also comes to work with me, which is fab as they love him, he does need some teaching but i think we are far to soft with him.

As for my health that is a nightmare, i am on more drugs than ever and i am not sure what any one them do, i am tired all the time and this is bugging me big time. I am struggling with my hours at work but cant afford to cut them any more, its so annoying as my brain wants to do loads but my body says no. I love my job but im not sure how much longer i can cope as it is exhausting. I miss my old job and i am so jealous of watching other people doing it. I could apply for an easier job within the company but i know i would never be ok watching someone else doing my job. I am struggling with pain in my chest and it is ok with painkillers but i cant take them when working as i am tired. I guess i am lucky i work with such a fab team who all support me otherwise i would have given up a long time ago. I am waiting to take part in a research study, not that i really want to but i kind of feel something may come out of it and i may benefit in some way.

Everything at home is ok, pete is better now and i feel bad that i wasnt as supportive of hime when he was in hospital as he was me, but i was struggling with juggling everything. I think he is happy in his new job as he talks about it alot and thats a sure sign. I overheard a conversation he was having the other night where he was saying he was going to move to brighton, i am kind of hoping this is not going to happen to soon as he needs to get settled down again and sort things out, i havent asked him as i kind of think that he will speak to me if he needs to as we have an agreement where there is no secrets between us. Its his birthday on Thursday and i havent got him anything yet, i feel a rushed trip to town tomorrow or online tonight.

Oh well i havent got a lot more to moan about and chester is just ruining a flower pot and digging a hole so better go and sort him out.

Another week over and what a long week it has been! Things seemed to have changed these days and I'm not sure why , I am tired all the time and it is exhausting! All I seem to do is work and sleep at the moment. Today is a particularly bad day just moving is making me short of breath! I really need to do some hoovering but think that may have to wait until my drugs kick in.
Peter went away for his birthday last night so me and grandad looked after smugly he was very good but awake a bit early and wanting to play!
I am getting really frustrated with my diet at the moment , I am trying hard but don't seem to lose anything, I know the steroids don't help and the fact that I struggle with exercise due to being so tired, I think I need a magic wand!!
Oh well I don't have a lot more to say at the moment I think I will try and do some washing and then build up to the hoovering, wish me luck!!!

Sun is shining!

The sun is shining and the sky is blue, it's going to be a lovely hot day again. Yesterday I managed to sit in the garden all day and just do not a lot! Today I plan to do the same with a little bit of thrown in!
I may even have a sleep as I didnt sleep at all last night because I was in so much pain and it was quite warm! I haven't been in pain like that for ages and then it comes and kicks you in the face just to show you it is still there I think!
This week I have got lots done even though half way through the week I was getting stressed, I dealt with it and took some time out!

Oh well not a lot else to say so may go and enjoy the sunshine whilst it is here. Xxxxxx

Juggling

Tonight as i lay here unable to sleep again, nothing new there!! i have been thinking how i am juggling a lot of different things at the moment and only one this falling couple make everything tumble.
I am trying to work, look after grandad, look after dog, housework, deal with my rubbish health and also
 try and have a life.
I feel like i am on a type rope waiting to fall of, im sure i will just carry on struggling along but it all seems so uncertain.
Today i was at Southampton and my lung function was no worse which was good, there was some suggestions of a new steroid sparing drug on offer but he is reluctant to prescribe as he wants to argue with st richards about this surgery again, so yet again another waiting game and i am in middle of it all.
I guess as with everything you just have to wait and see.

Oh well i have nothing really to say, more bored and annoyed that i cant sleep.

x
x
x

A busy week!!

Since my last update i have been home from hospital a week and what a week it has been.
I went back to work as normal straight away and that's fine, although i am tired things are ok and i have managed to get things done this week which is better than previous weeks. I have since been told that the day before i went to hospital i was acting really odd and nearly quit my job, good job i didnt as i like my job a lot and dont want to give it up, i just wonder if it is getting a bit hard physically.
Pete is still in hospital and not sure what is going on, they dont seem to be doing much and he says he still being sick so not sure what is happening, hope they get to the bottom of it soon. I feel bad i have not visitied everyday but i have been so busy with running around and looking after the dog etc. i am trying to be patient but it is hard juggling everything,  everyone has helped me loads which is good although i hate asking for help it has been good.
Some of my friends have really done loads for me this week and i cant thank them enough.
One of mine and petes friends has been in contact every day and listened to my moaning but also helped me see things how i should really. He underestamates how good a friend he is.
My best friend has been fab as allways and this has been a hard week for have as it is the anniversary of her dads death this week, she covers it up so well but i know deep down it still hurts her a lot. I am allways here for her and her family and i hope she knows that. She is my rock allways and for that i am trually grateful.
Some other close friends have also been helping me by sorting out my drugs and putting them in the blister pack for them week as i was finding it more and more confusing so thats one thing of my mind and i am reassured that i am taking them at the correct times.
Another close friend has helped with the house which is always helpful as i just find it such hard work. Who would of thought hoovering could be so hard.
Dad and Von have been fab and helped with the dog as he was unwell and needed the vets etc.
Other people have just helped by listening to my moaning and groaning, these people are true friends.
So all in a better week.
As for health well i saw the surgeon and it is official i wont be getting the surgery they were talking about as it is just to dangerous, i am gutted but i think i knew deap down they would say no. It is a huge blow and i am hoping that on Monday when i see Southampton they will  come up with another plan. I am trying to be positive but it is getting harder. My drug list gets longer and nothing changes.
I have been looking after smugly this week and he has been so funny although i know i could never have kids, a dog is bad enough i am knackered. He was really poorly at the beginning of the week and i had to take him to the vets he is better now and don't we know it. He has so much energy and wakes up far to early for my liking. He is following me around all the time, Grandad is helping with him which is good but i dont like to put on him to much as its not fair. He does make me chuckle though and i can see how dogs make good therapy.
Oh well lets hope next week is better and pete will be better and out of hospital and i will get some energy from somewhere as well as some answers from Southampton on Monday.

I think an early night is in order, lets hope smugly agrees!!!

Waiting!!

Why do people have to be so bloody awkward! I am currently waiting for my discharge letter but the pharmacist seems intent on making it difficult as she wants to argue about the drugs I take!! Oh well at least I am out of here today as I feel loads better
I have spoken to several people and one person in particular told me that I was really odd on monday and was trying to make some bizarre decisions , I can't say I remember much about it and glad they saw through it. I worry a bit as I didn't feel unwell just very tired a bit off colour. Oh well maybe next time someone can point me in the right direction.
If it doesn't rain it pours in our house, Peter is in hospital after his colonoscopy as he was in a lot of pain, as a result poor smugly has been moved from pillow to post but hopefully today he will be ok when I get him home, not that I can walk him but far so he will have to bear with me. I hope Peter gets out soon as he starts his new job on Tuesday and he needs to go.

Oh well not a lot else to say apart from how much I appreciate what people have done for me this week, I am more grateful than you would ever know x x x x. X x. X. X

Life is so precious!

As I type this I am residing in my local hospital.
I think it had been building up for a few days as over the weekend I didn't feel great, then Monday I was tearful and so tired, to the point where I was in bed by 6pm, on Tuesday morning I woke up with a funny cough and just feeling yuck. Something in my head was saying that I needed to get to doctors. Bd maybe have steroids increased or change antibiotics. Well I got an appointment and saw the nurse she was really lovely as usual but new I wasn't well, she called the doctor and then an ambulance and I was in a and e very quickly, then to the assessment ward and now on the respiratory ward. Feeling better, just exhausted now, it's funny when just breathing makes you tired out. I was hoping to be out today but they want my peak flow way up from what it is so not sure how long that will take. Today I am to tired to argue with then but tomorrow I will as I am not staying in here the weekend. I am surrounded by two old ladies that need to be loved in a nursing home but in fortunately they will probably die in a hospital where the nurses just gave the time to give them one on one care! It breaks my heart to watch them, don't get me wrong they are being cared for but there is no privacy here for them and in the final moments of life that is so important. Another lady spends her whole time shouting as she is lonely, she is so sweet and just needs love and understanding. Another patient has been here forever it seems and has no intention of going home. Funny how the world goes round. This ward is my usual ward and it's nice because they know me but what drives me mad is when they say things like 'you just couldn't keep away' like anyone would choose to be here! I know they mean it as a joke but it's not funny when you have heard it twenty times before. .
Oh well tomorrow is a new day and I hope to be out of here and back to normal life, I think I have to get the ward sister to tell them I am ok as she knows me well and will be ok at home..
Oh well unless I am driven mad tonight with people shouting I wont be updating this until I get home in the comfort of my own surroundings oh and with smugly who I miss so much!!!!!!

why, why, why!!!

Why is everything such an effort today? do people really understand? How much longer can things carry on like this?
These are all questions i have running around my head tonight.
My arm hurts, my lungs hate me and everything seems such an effort, and its Sunday and back to work tomorrow.
I went out on Friday night and had the funnies night but then i have spent two days recovering from it. I think back to the times when i could go out and then just carry on as normal, i just get to tired these days and it bloody annoys me.
I have hardly done anything for the past five days as i couldn't go to work as i had partially dislocated my shoulder and had to rest it, the thing is now i dont want to go back to work,i know everyone gets used to having time of but this feels different. I dont feel like i can actually manage everything anymore and whilst i used to love going to work and i still do to a point it is such hard work and i am exhausted by lunch time. Its not just tired it is pure exhaustion. I dont feel like i give 100% anymore as i just cant manage it. I get by i guess and i have to as we need the money but i wonder how much longer i can carry on fooling myself and everyone around me. I need a sit down job and one that starts and finishes at work as i just cant manage all the extra, im just not sure this job exists for me. I guess time till tell and until i can find something i have to carry on as i am.
I think my lungs are just grumpy today as its warm and humid. I just cant get a deap breath, my peak flows are only 150 which is not good for me and i am just tired, i guess an early night might help. My arm is also driving me mad as it hurts, but having it in a sling is a nightmare as i cant do much.
I also wonder how much people understand, i have never asked for extra help but sometimes i should, i spend so much time trying to cover up how i feel and really i want to be screaming for help.
This is turning into a really whingy post and i know things will not change unless i change them.
I think i need to think about things and decide what i can and cant do and then try and work from there. I guess one of the problems is one day i feel like i have loads of energy and could do anything and others just walking to the car is an effort.
Oh well an early night is needed i thing

x

Smugly went for his first official hair cut today and he now looks gorgeous!! I have attached his picture to show him off!! He is so lovely and I am completely in love with him!!

I still have back ache and even with a ton of painkillers it still hurst! The painkillers are also making me feel quite breathless so going to have to try and take less!! I'm do tired I need sleep but that seems impossible.

I'm worrying a lot at the moment and the person concerned knows I am. I wish I could do more to help him but as I have told him many times he is responsible for his own destiny and no one can make decisions for him. He needs to find a job desperately so that he has money and something to do, this would mean he could do things and not be bored! I hope he sorts things out quickly as the situation is getting everyone down, one way or another. He knows I will back him up whatever happens.
Oh well enough gabbling in here, I think another few chapters of fifty shades of grey and then of to try and sleep!!

Ouch!!!

I am updating this at stupid I clock as I have hurt my neck and back! It is agony, the doctor I saw about it today was brilliant. He wanted to sign me of work two weeks but I said no!! He gave me some tramadol, codeine and paracetamol. This has helped the pain a bit but I am itching like mad!!!

It's seems a long time since I have updated this, today is one of those days where I could either scream or burst in to tears!!

Life at the moment seems full of problems or challenges and I want to run away from it all. Instead of running away I guess I need to deal with them.
I have a to do list as long as my arm and no idea where to start, people seem to pile jobs on top with no thought to how I am supposed to get it done. I have nvq assessing to do but can't be bothered, that's the opinion everyone else has so why shouldn't I! I have stacks of work to do and it just builds up and up. Last night I actually felt guilty I wasn't catching up and it's my day of, that is ridiculous so I have decided no work st home during the weekend, I don't mind during the week but I need days of to recover and recuperate!

Health wise things are naff, I have been trying so hard to put on a front and it seems to have worked to a point, that is for the people that don't know me well.
The truth is I feel terrible all the time but have to get on with things, I am tired and I hurt but it doesn't stop people putting demands on to me, I guess I am my own worst enemy as I should say something but I can't, I feel like such a failure sometimes. I am awaiting more test results and then decide whether I can manage any more antibiotics for these stupid bugs. I had my ph study and the nurse said that it showed masses of acid and she was surprised that I have so few symptoms, I'm hoping this will sway the surgeon in a few weeks time to do something! I saw my local consultant who was nice and sympathetic to my situation but said there was little he could offer. He is concerned that my heart is working so hard because my lungs aren't I guess so he is referring me to cardiologist! We will see I guess, the good thing was I had a cold and it didn't cause to many problems.

I seem to be stuck in the middle of trying not to rely on other people at the moment but at the same time people seem to be relying on me for lots and I know I can't help them to much even if I try! I am thankful for having supportive family and friends and sometimes wish they would just wrap their arms around me and tell me everything will be on, if only life was that simple.

One good thing that has happened lately is Chester moving in, here makes me laugh every day and does cheer me up, stupid dog!!!

I am really worried about a couple of people in my life and wish I could do more, if only I knew what to do I guess that would help, if only fairy god mothers existed!

On Tuesday we are starting chub club at work, I really want to lose some weight so I'm hoping this will be what I need! It's not a competition but just encouraging one another!

As I have hardly slept this week I think an early night is needed so it's Wimbledon final, dinner and bed for me, or that is the plan, I can dream cant I.

X x x

Just breath!!

I'm updating this after a really stressful weekend, lots of things have gone on and I can't really say much on here as it wouldn't be fair, I don't want to go through it again so best not to. I have been hurt and I will never understand how things got to this point and I just hope things are moving forward now and everyone sorts themselves out.
I have not been feeling great recently and been back and forth to doctors, the Antibiotics have made me so sick and tired and but have taken them as I was told to, on Friday I went to pick up my prescription and my gp asked to speak to me he didn't think the antibiotics were really making much difference from xray and blood results, he was also worried that my heart isn't working so well which is why I have swollen ankles and am do breathless, we had a real heart to heart conversation and he told me to go home and think through a few things and see him today. I have to admit I chickened out this morning but did go later in the day. It was actually ok with the nurse sticking by me and saying I wasn't ready to give up so they should try and treat everything. He is going to arrange a multi disciplinary meeting to discuss everything so hopefully that will help things. I got a massive lecture about taking it more easy and trying to not get stressed about things, what a joke with everything going in my life. I am going to have to speak to work tomorrow but I feel like such a failure as I hate giving in. Sometimes I just wish I had a magic wand.
Oh well tonight I am looking after Chester as Peter is at work and he has really cheered me up, he is so funny and actually it's quite nice him being here.

Oh well not much more to say at the moment I just wish I had a magic wand it would sort everything out!!!!

Can't sleep and to many worries!!!

Well as you can see its 3 o clock in the morning and this body of mine has decided that it only needs an hours sleep well I have news for it! I am so tired and this does not help. I am still taking the different antibiotics and it us taking its toll with the being sick, they also make me do tired which is horrid, still 9 days to go so by the end god knows what state I will be in.

I have got myself in a pickle about lots of things and just need to get it of my chest so hear goes.
I am worried about Peter as I know he's fed up about his job and situation, I also know that he is having a hard time I just wish he would chill out abut and not get so cross with everyone as a times him and grandad are arguing and I am stuck in the middle, I don't cope we'll with it when I am tired. Chester is settling in well now and I have to say I am quite fond if him, he makes be smile and gives life some meaning..
That's home and it's ok.

I am worried about a friend of mine as I am close to her and they are having a hard time as a family, I am doing my best to help but there us only so much I can do.
I am also worried about Kate as it was fathers day at the weekend although she says she is fine I am never really sure she is as I think she forgets I know her do well and I see through her everything is fine act. I just wish I could be there for her more but at the moment just getting up is hard work .

As for work it is tough, I really have to start saying no as I seem to have a million jobs today and it's to much, I like to be busy but the constant pain and being sick makes it hard. Yesterday I broke down in tears in the office as it just got to much and I felt like I couldn't cope. I hate admitting defeat but I think I am going to have to.

I also have to admit defeat with my medication. It took mr two hours to sort it out at the weekend as there is just do much, I try and get a weeks worth ready then it's done but it confuses me when I am do tired and I find it hard to sort out, don't read this as I am not having it, I am it's just it's turning into a nightmare sorting it out every week, another job I could do without it.

Finally why are people do insensitive, yesterday I was told that I had put in weight and whilst I have a little bit, I wish people would keep there mouth shut, they should try taking huge amount of steroids and try and lose weight, god knows I try and some days. I Hardly eat also with being so suck it's hard to even keep food in.
One final thing I saw a friends beautiful baby yesterday and she is lovely, I was so jealous of her, I know I always say I don't like children, I do really I think I say that to try and convince myself.. I wish my situation was so much different but it's not so I need to get on with it.
Oh well enough moaning From me at stupid I clock in the morning
Sarah
Xxxxx

I have given in and taken some time of work to see if I can feel any better than I do! I think they have finally found the antibiotics that might work so for the next 14 days I have to endure being sick but as long as it gets rid of these bugs I don't mind.

I really need the people around me to care at the moment as I am struggling with life in general, I have no energy to do simple things! My best friend is the most fabulous person and is always there, I'm not sure she knows how bad I feel about always being Unwell and not being able to do the things we used to do.
I wish sometimes people would just do things without me having to keep asking, I know everyone has there own problems and I appreciate that but I always seem to be there for other people but when I need them it seems like a battle, this isn't aimed at anyone in particular it's just a general feeling.

Last night I had the same text message from two people who mean very much to me! It was one of those chain messages which I know aren't personal but it meant alot, it says about being strong and carrying a burden, I actually cried when I read it as it hit a nerve I think, I wish I was strong on the inside, I am fab at putting on an act and always showing I can deal with anything and not letting it get to me. The truth is im not, I feel like my life is bring ripped away from me and sometimes I feel like giving up, I know there are people out there much worse than me and I appreciate that, it just doesn't make it any easier to deal with sometimes. Anyway I am waffling now!!
I have decided for the next two days I am doing very little , let's see if that happens!

Very fed up!!

This blog is starting to turn into a real place of me moaning and to be honest it was never meant for that really but it's my blog so I am going to use it as I feel useful at the moment, it is the one place I can let of steam so here goes.

My lungs hate me and I now have really nasty bugs growing and it doesn't seem to matter what antibiotics I take they just don't work, I am also really suffering with pain which I can't deal with it unless I take so many pain killers that I can't function. I hate asking people for help but right now I need it more than ever. Even simple things are hard work and I just wish people would help without me having to beg them to..

I'm not going to work today as I feel so unwell and need to wait and see if the antibiotics start working. I have just heard from my gp and he wants to speak to me later about my results so we will see what else he can offer, I saw the nurse yesterday and she was fab, really understanding my situation and wanted to help. Tomorrow I am due to be seen again so we will see.

I am really fed up as well and kind of feel life is hard work at the moment with little to offer.
Oh well whinge over and time to go and please everyone else by doing the housework etc.

X

Well i have been home from hospital a week now and it seems recovery is a lot slower than usual.

I have had a busy week at work and home, the queens jubilee meant that i had lots on at work, it was really lovely but hard work at the same time, i am really lucky that everyone at work got involved and were brilliant at helping. I always count my blessings that people at work always help me and i know i wouldnt be able to stay in my job without them.  The whole jubilee was lovely and made everyone proud to be british i think. 

I am really struggling health wise, since i was discharged from hospital i still have an infection and have just had some results showing that i have pseudamonas infection so more antibiotics for me, the last few days i have been in agony with my chest, they say it is pleurisy all i know is i feel like i am having a heart attack, every time i breath in i could cry with pain. I am taking as many painkillers as i can and even they don't last for long. It has ruined my plans this weekend and has meant i have let people down, which annoys me as i hate my health getting in the way. The other problem is i am so tired i could sleep all the time now and even doing little things is hard work, i hope it is just the infection and over time things will improve if not i have no idea what will happen. I am at that stage where i am to tired to do things but i dont want to give them up either as that would make me feel like such a failure.

I am so fed up with it all at the moment and just cant snap out of it but its harder than people think. 

I also hate letting people down and having to rely on others, one of my biggest things is i dont ask for help and then struggle to do it myself and half kill myself doing it.  I am so lucky that i have some very close friends who i think know how hard things are for me and always step in if necessary, i just some people that are closer to me could see it and just do simple things that need doing before i have to ask them, oh well i guess thats life.

I have been thinking alot and people that i have not seen or spoke to for ages, i know i should make more of an effort to maintain contact buts its hard and there expectations are sometimes more than i can manage. I am going to make every effort this week to try and do something about this, i just hope they understand and can see it from my point of view.

Anyway i am waffling now as i dont have anything interesting to write. 

I think its time for more pain killers and a little sleep and hope that makes me feel better

xxx

Escaping

Well this Morning reality has hit big time about what has happened this week.

I am going home today and I can't wait I always took for granted what I had and I never will again. When I came to hospital I had no idea how poorly I was, I guess you get so used to that it's normal to feel rubbish. I dont honestly remember much So maybe that was my body's way of coping. Anyway when Peter and Kate arrived they looked really worried as they had been told to get here as soon as possible. Thanks to the NHS they responded so quickly they literally saved my life. I think i need some time to recuperate and get my head around things. Dying is not an option for me yet so I intend to live every day as its my last, I also intend to tell the people closest to me how much I love them. Peter has been fab this week and I can't thank him enough. Kate has been a star as always and takes it all in her stride.
I think recovering is going to take a few days as I am exhausted doing nothing ..
Life goes on and thank god it does, I'm just glad I am out of here today as I am feeling better than I was and being here is not helping much now.

Scary few days

I am writing this from my second home, things went down hill quickly and I ended up being admitted!
On Monday I thought I had Hay fever and went to see theresa at the surgery, she wasn't very happy but agreed to increase pred and start nebs as well as some extra anti histamine and be reviewed in the morning! Over night things got no better although no worse really so went back to see her as planned and my gp and her decided admission was necessary, from that point I remember very little, I remember how brilliant the surgery were and getting in the ambulance! Still bring stubborn and saying I can walk! I was taken straight to mau and they were fabulous they acted really quickly in getting I've drugs etc in! They managed to ruin my white trousers but saving my life was more important! Itu were called and my family called in, I was oblivious to most of this and remember feeling quite calm amongst all the panic. That was Tuesday morning, I am now safely on the respiratory ward where they gave been brilliant! I have had no proper sleep since Tuesday so I am exhausted, who would think breathing could make you so tired. I think I could sleep for ages. It turns out have the pseudamonas infection again in both lungs! I'm hoping they will chuck me out before the weekend as its a four day bank holiday and I'm not staying here that long I will go mad. I'm off my in drugs now so I'm thinking they might if I promise to do nothing!
Anyway after a scary few days for me and everyone around me life goes on! I hate seeing the fear in my best friend and brother eyes and hate putting them through this. Anyway I'm hoping this is a temporary blip and if I can get on top of this I will be well for a while.

Anyway I am hoping this time tomorrow I will be home and getting some rest
I think I need to try and get my head down before everyone around me starts shouting and driving me nuts.

Fed up and I don't know why!

This week has been a week of mixed emotions after returning from holiday I was quite poorly with a bad chest which I think everyone thought was going to turn into an admission but some how we caught it in time with masses of steroids and antibiotics, I was being a bit stubborn by not giving in as I didn't want people to say I told you so! I don't know why I care what people say but i do!!
Then the next day Peter moved back from Wales which was planned before my holiday the only thing was I couldn't go up with dad as I felt so unwell! He is back now and with his puppy. So far it's Ok and he is actually quite sweet although inkeep calling him ugly. Peter starts a new job soon which I think will make it easier for everyone.
I have had a busy week, with lots of flowers to plant at work
And home not helped by it being the hottest week of the year, anyway we got there in the end and they look lovely.
I seem to be suffering with hay fever or it could be a cold I'm not sure, I feel awful but am determined not to put steroid dose back up as it is really starting to have horrid effects.
I'm really fed up at the moment I am blaming the steroids, my bones also ache and every little joint is agony, I am also annoyed that the steroids mean I have put in weight, I was doing so well and then it seems I'm back to square one again. Right now I feel the desire to run away from everything and hide, I'm not ever sure why I just do. Oh well it's not going to happen so I guess I just have to get on with everything

Xxxx

Reality hits!!

After the most fantastic holiday I'm home and don't I know it. I'm so annoyed as this morning I woke up this morning coughing and spluttering, I think I have caught a chest infection from the plane so I guess the next few days will tell, I just hope it goes away quickly as I don't have time to be ill over the next few weeks.
I guess the most annoying thing is the fact I was so well away and now I'm back to where I started.
Oh well I have lots of family things to do this week and need to go to Wales in Tuesday to help Peter move back, I won't say to much about that as its probably best not to. Anyway I think I need an early night as I am so tired

Xxxx

I'm in heaven

I'm writing this from the beautiful canary islands it is much hotter than we expected but it is gorgeous! 40 degrees today which is a bit of a killer but it is just rest I need. Me and Kate have had such a laugh already!!! Not looking forward to getting back to the reality of home in a few days but until then I'm in heaven!

Excited, stressed and a little nervous!

This time on Saturday i will be enjoying the sunshine of fuereventura and i cant wait, i didn't really i have not had a proper holiday in over a year as i was using my work annual leave to reduce my hours down over the last part of the year. I think i need a holiday as i am physically and mentally exhausted, i just need to get there in one piece.
With tomorrow the only day to get everything done i think its going to be a long one, oh well i always leave everything to the last minute so that's nothing new. I am sure everything is going to be fine whilst we are there and i know we have a nice time and then when i come home my body can get a strop on as much as it likes but it will not ruin my holiday!! I have a doctors telephone appointment tomorrow to discuss more blood results and i know what he is going to say and i hope it is a simple solution otherwise it will have to wait.
Oh well the next time i update this i hope to be feeling rested and relaxed after a week of doing nothing and not running around after anyone.
One thing i forgot to add, Rosie is still very much alive and is staying with Nicola for a week so i hope she is goo, its odd without her tonight, i think i have grown more attached to her than i thought.
Oh well must crack on with all my jobs!!!

busy time with a body that is rebelling!!

why is life so busy, i never seem to have enough time in the day and as a result my body is getting in a strop. This morning i couldnt even get out of bed as i ached from head to toe and i just felt generally rubbish, anyway i got there eventually and no one really noticed so that was ok. I am starting to think i have taken on a bit to much and i feel bombarded with it all.

I am really behind with several things and now dont really know how to catch up, oh well i guess i will do.

I am trying to stay as well as possible before my holiday which is now only a week on saturday away, i cant want as it will be the rest i need and a time to relaz. I think my body is trying to tell me to slow down as i have a constant headache and just feel yucky as well a bit out of breath, nothing major just annoying really.

I think i need an early night tonight to see if that helps. 

Oh well im just whinging now so i think i should end it there, hopefully the next few days will be different.

xx

Quick update

I haven't updated this for a while so thought a quick catch up was appropriate. The past few weeks have been busy with one thing and another with work, home and what seems like lots of hospital appointments. As for home everything is plodding along and me and grandad now seem back in our own routine again so that's one thing, the last few weeks I have been thinking much clearer and finally asked for some help from someone that I had been wanting to ask for for ages, anyway I did and I think it has sorted something out which is good. The most exciting news is that I am going on holiday in two weeks with my best friend, it was a bit of a last minute decision but it's now booked and we fly on the 12th may, I am very excited and looking forward to the rest. I know many people think we are stupid going away but like I have said before I need to live my life and make the most of what I have, my medical team know and although they were a bit worried they had to agree I am not silly and would be veto careful. So that's it we are of and I can't wait. Work is fine, just busy but thats normal I am now on shorter hours and Its nice if I can get away on time. As for health things are about the same I had a Southampton appointment and he decided the methotrexate wasn't working and was causing other problems so this has been stopped, I am disappointed but I can see his point. He is still keen for me to have the surgery on my stomach and he has said if that doesn't happen there is a new steroid sparing drug I voud try, other than that he said my lung function is still appalling, so yet again it is a waiting game, I saw the gastro surgeon who was lovely but not keen to do surgery, however he did agree to do three new tests to check my swallow etc and then see him in 6 weeks for a final decision. I have also seen the respiratory nurse and looked at all my medications as there are so many and it is getting confusing, any way she offered to get them blister asked for me if I want on a weekly basis, I wasn't keen on this so I have bitted the bullet and asked Kate to help me, she has helped me sort out all that I have and a couple I was taking at the wrong time, do now I think they are sorted, I can usually sort the out myself but when my oxygen levels are low I do feel a bit muddled and I think then I look at all the boxes and think, of f@@k where to start! Anyway that's done and although I felt odd asking for help I did it.m Another situation is a annoying me and I'm not going to say my here as its delicate and I need to sort it out myself, I I hate being used and I feel like someone is taking advantage, I have no idea where I stand and the situation has changed very much, oh well I guess time will tell and I just have to wait. Anyway I have a dy of housework and shopping ahead then I am going to collapse with exhaustion on the sofa later.

missing you more than ever!!

Tomorrow it will 13 years since the decisions was made to turn of my mums life support machine, i will never get over that day and as much as it has become more bearable it still hurts.


In the beginning  i used to look down the road and wish it was all a mistake and you would walk back into our lives. 
Such a lot has happened since then and life has changed so much in good and bad ways. Everyone has moved there lives forward and i know that 13 years is a long time but i dont think people realise how much they should appreciate there mums, i never told mine often enough and have lots of regrets. I miss not being able to ask her advise and having her to lean on. I wonder what life would be like now if she hadn't gone!!
I think people should be grateful for what and who they have as it can be taken away very quickly.


This is a poem i wrote a few years ago for my mum so thought i would add it here.
It broke our hearts to lose you, but you did not go alone Part of us went with you the day God called you home.A million times we have thought of you, a million times we have cried.If loving could have saved you, you would have never died.Forgive me Lord, while we always weep.For the one we loved, but could not keep.You were always warm, happy and bright Now we see you sparkle every night.You will always be cherished in our hearts forever. Family and friends


Tomorrow is going to be hard but i guess its just another day.




Apart from this going on this week i have had a good week, i managed to catch up on loads of work and have such a laugh doing it.  I have also spent some time with Kate and it has been so nice, just like old times i think i forgot how much of laugh we can have. 


As for the hip that's driving me mad, it infected so i am on more antibiotics. I have been lectured today about walking on it as i was told not to but that's easier said than done but tomorrow i will try and use the crutches, if i break my neck then i can tell them i told you so!!


Oh well not alot else to say
xxx

Need to hide till after Thurssday

Blogging is a funny things, its like having a diary but you forget that people might read it, i don't really care who reads this and i never think of it like this. This is my way of letting of steam and i suppose a way of being able to look back and see how things  have moved on.
This week is the week i hate every years, last night would of been 13 years since my mum collapsed and was rushed to hospital with a blood clot on the brain, i will never forget that night and often think what we could have done differently and also i guess how life would be so different now if she was still here.
Thursday  will be 13 days to the day when we made the awful decision to turn of her life support machine, i know we did the right thing as she always said she if a situation ever arose then make sure the machine was turned of as she didn't want to be in a vegetative state.
I still wonder if she knew something was wrong (although im not sure how she could) but that week she had made sure we had cupboard full of food and that everything was done around the house, i know it sounds silly but we always went shopping on a sunday so why on this week did she go two days earlier, we will never know i guess. I cant wait until after tuesday then we can move on for another year, It never hurts any less you just get used to it i guess.

This week has been a busy week, I saw my local consultant, actually both of them and they were really nice, they have no new answers apart from the fact that my lung function is at an all time low and there is not a lot they can do as i am on every drug available. They are going to speak to the surgeons again and i have an appointment at the end of the month to see if they will reconsider, i think its grasping at straws but who knows. I am also going for another test to check my swallow etc but not sure when. I did  finally get some answers to why i have been feeling so rough, i had some blood tests which showed very low iron levels and a very high white cell which explains why i have been so tired, first of we though the white cells was a chest infection but on friday i suddenly developed a swelling on my hip which turned into an abscess and has now burst (which is yuck) i have been given some antibiotics and told not to weight bear for a week. It is so painful i could cry. I'm not sure how i am going to cope at work this week as walking around is agony and if i use crutches then i have to put up with everyones comments. I have hopefully got some sit down jobs so i will see what i can do.

I have resigned myself to live for today and not worry about the future as who knows what might happen, i  am so grateful to have such lovely people around me and as usual kate has been an absolute star and supported me completely, she means a lot to me and she knows it, im not sure where i would be without her i just wish that i had more energy to do things, like going out etc. Although she says she doesn't mind i still wish things were so different. Oh well one day!!

I don't really have anything interesting to say so i guess its time to sign of for now and try and have a sleep after i have taken some super strong painkillers.

Lazy day

After a busy week today I am finding it hard to have any energy to get up!!
This week I have a busy week again and today I was planning to get organised but so far not a chance.
Yesterday I had a lovely day and then at the end of it I was in floods of tears! I think little things make you realise what you don't have and how life could be so different, I'm not going to say much more about it, just I wish things were so different.
Anyway my best friend said to be in the week that I need to start living my life and going out and having more fun, she was so right but it's easier said that done, definitely something to work
On though.
Oh well everything is plodding along and that's ok with me.
I really should get up and get things done, that's when I drag my butt out of bed! !

Spoon theory

I have just read this theory called the spoon theory and I think it is an excellent way of people knowing what it is like to live with a long time condition. Google spoon theory to read it in full but I am going to explain it in context to my life. If you imagine that someone healthy has as many spoons as they like where as someone with an illness or disability has a limited amount a day, let's say I have 12 spoons today and this is how my day looks Wake up and need to jump out of bed quick as I'm late as usual. That's one spoon used Having a shower and washing hair, that's two spoons used Finding clothes And getting dressed is Another spoon gone. Making breakfast which I need but makes me feel sick and taking a bucket full of drugs is Another spoon gone Lugging my stuff in car, driving to work and getting out the other end is another spoon gone It's only 9 o'clock and I only have 6 spoons left! Can you imagine having to think about how you use up your spoons for the day and knowing you have to Get to the end of the day yet. Working uses up 3 spoons and that is only if I do what I need to and not the hundred other things people ask you to. Now it's home time and I drag myself to car and home, this uses another spoon so I'm left with 2 spoons, dinner has to be easy as I'm to tired to cook much and then all I can do is pjs, drugs and bed as all my spoons are Gone. Some days I have more spoons than others, and others I have less especially if I have infections or more pain. People ask what it is like to be me so imagine if you had to make choices about how to use your spoons and everything is so limited! Daily tasks that people take for granted have to be organised in advance. So next time you ask why isn't that done, or comment when I have no lunch or the hoovering is not done or car not cleaned,the list goes on, maybe I ran out of spoons, maybe offering one of yours would help or just be a little bit more understanding!! I'm not sure I have explained it well but if you google it you will soon understand Xxxxx