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!!