work and unexpected help and support

I'm guilty of neglecting my blog but since Friday Ive been busy phoning people and reading up on my options. I have managed to secure some legal help through trade unions and Ive also secured some practical help from a voluntary organisation who specialise in assisting disabled people into jobs or enabling them to keep a job despite all the odds.

I'm feeling slightly less stressed about my meeting in mid February now though I'm still very nervous and with good reason my employer has never been very accepting of the disabling nature of my asthma. I'm hoping that with a third persons representation my management will realise they have been less than supportive. and quite often destructive to my overall health and well being.

Anyway that is a continuing battle and thus the saga continues. what i think they (my managers) don't realise is that i have had to do a lot of fighting in my life... fighting through school, college and uni against the odds and battling a sometimes life threatening condition. i have battled obstacles before and won - i managed my Duke of Edinburgh awards it was really hard but i did do it... this i know is different its a battle on a new scale and its to keep my career but I'm determined not to go down without a fight - I'm good at my job!

Anyways its out of my hands to some extent and i trust whatever happens happens for a reason. i will certainly post again once i know what is happening. but in the meantime I'm making calls and collecting evidence at the same time as battling with a chest infection which seems never ending and the benefits office - what is it with our government? its like pulling teeth and i genuinely need the help ... by the time they decide to help I'll have either been evicted or be back at work!!! lol!

I feel a Little sad today though as well, though its not a bad sad as such, more reflective its almost a year since my grandma died and a year since i was last at work. on balance Ive been through an awful lot in the last 12 months so its just another hurdle in the race of life, and it most definitely can be achieved. i just hope my grandma is proud of me.

anyway its getting rather late so i bid you all a good night
lv rattles Xxx

work - people who dont get it!

For some time now I have been battling to keep my career. This is mainly due to a total lack of understanding by my current employer. My manager is quite continually reminding me of how much of an unreliable person I am as I am a brittle asthmatic and hates the fact I'm often unwell! My asthma is quite often made worse by stressing about the fact I cant have time off which often results in longer absences than if I took a few days off in the beginning of a problem! its all a bit unfair but I think that's the way it is for a lot of brittle asthmatics so I'm just going to have to roll with it I think. I was told today that because they cannot be sure I wont have any further time off that they may well terminate my contract of employment which has really upset me. I love my job and would do anything to keep it, I even asked if they would reduce my hours so that I could return but I think that its just not going to happen now. I am however keeping my fingers (and toes) crossed that when we do have this meeting my trade union rep and myself can sort something out!

I think the difficulty is that people don't understand the actual ins and outs of having brittle asthma or the implications and restrictions that it can often have on your life. I love to live my life go out with friends, have a dance and a drink or go for a long country walk. All things which i can do when I'm well. When I'm poorly however, it takes a lot of effort to do the slightest thing and can at times be very restrictive. I hope that I can get things back on track so that my employer does see that with reduced hours and a stool to sit on I can be back to my old self again at work!

Anyways - health wise, I'm still fighting off another chest infection but, i am doing a lot better, and even better than that Ive managed to stay out of hospital which is fab!! Its the longest Ive managed since this time last year so far as Ive been out since just before Christmas!!

I spent the day doing not much really and feel i need to get myself motivated tomorrow. I did play the piano a bit earlier and have done some much needed paperwork so at least it wasn't a totally wasted day. Ive set myself a few goals the last few days. I want to be able to walk to my local shop (only 0.3 miles) by the end of next week. It is a bit of a challenge as I'm still struggling round the house and up the stairs at the moment but its a target. It gives me something to aim for so that i can get myself back to some level of fitness again. I also want to sort out some bits and pieces in the house which have been annoying me for a while mainly tidying and sorting really, but I also want to finish painting some art work i started for my bedroom, it matches the colour scheme that my room will be when its finished - though Ive not started that properly yet!!! Think i may need to get a decorator in for that though as the paint fumes will make my asthma bad which i do not want at all!!! sooooo there are a few little things to keep me occupied for a while!

hope everyone is well and staying warm - its particularly cold outside at the moment which is never great - until it snows in which case it beautiful!!

bye for now
rattles Xx

Life, its challenges, and the future.

Many of my close friends all have their own blogs, and, to be honest I never really wanted to create one. I suppose I never really felt I needed too, though Im sure deep down at times I could have probably benefitted from typing into an abyss!!

Last year was a very difficult year, emotionally, physically and mentally. It started badly, with the tragic loss of my dear grandma with whom I was very close to. I adored her. I still miss her terribly and as i write have tears starting to prick in my eyes! This was back in february 2008, its still no easier as in a way I havent really had chance to process it all. Shortly after my grandma's death i became very unwell. My asthma took a nasty turn and as follows the normal pattern for me I was rushed into my local hospital. I was in hospital till just before my birthday - a grand total of five and a half months! During which time most of my veins had been destroyed by the constant assault from doctors anxious to get venous access for the drugs i needed to have. I had several infections including three different pneumonia infections, two septecaemia infections and several niggling infections which themselves just irritated me under the surafce - always there but never the main problem!

I had a glorious week at home where I felt everything was starting to get a little better and I was starting to think about trying to get myself back into work and the job I love to do! Almost out of the blue one night I woke struggling for my breath again, i knew the routine and the ambulance again took me to my local hospital! after several days on ICU and HDU I was again back on the usual ward of my local hospital. The staff were brilliant, always smiling and encouraging. I did tend to reject any offers of psychological support as I felt I would be labelled as being 'mad', something which i am not, just, the longer I fought on the harder it became to accept that half a year had passed and I was still an in-patient (allbeit a very inpatient patient by this time!!) finally again I was released with great support in my community!

I managed just over a week, 10 days at home, and again I was recaptured and taken to my local hospital this time with a double pneumonia and septecaemia. The infection this time was so severe that it left me with raised intra cranial pressure. I had such severe headaches that even morphine was only working for minutes at a time. i was put on an antibacterial treatment regimen of strong IV antibiotics for a month but also required IV antifungals as - due to the steroids I use to control my asthma, my immune system was so sluggish I had managed to pick up a yeast infection in my blood stream. It was at this point I reached out for support. I felt so alone, like nobody knew what it was like. I turned to Asthma UK which is a wonderful place, I go there to chat to other people who are just like me, desparatly trying to be normal in abnormal situations. I have a number of friends from there now and sadly yesturday I found out one of my friends has recently passed away. She was so strong, such a fighter it gave me the encouragement I needed in the tough times. I will miss my friend a lot, her passing made me think how vulnerable every life is and how sometimes I can be very complacent with how bad I am actually feeling shugging it off as a bad day, then a bad week, then before I know it I am again fighting for my life in hospital. My friend has made me realise that I have to firstly take it seriously all the time, not just when it suits and secondly, to live my life as full and as actively as possible. My goal now is to get fit enough for work hopefully in the next few months. I am then only working for a maximum of 3 days a week. I want to try and boost my fitness too.

My aim is that in 2010 i will hopefully be fit enough to have a go at walking kilamanjaro if there is another trip then through Asthma UK. There is one this August but I really feel that this is not an acheivable target for me just given what my body has been through in the last 12 months. I am currently struggling to walk down my stairs without getting too breathless so even aiming for 2010 is a hard task.

My main reason for writing my blog, is to write my thoughts and feelings down, put it out there so that anyone else stuggling with any chronic illness will know that they are not alone. I also want to be able to see my progress and hope that in a years time I am a bit closer to what was always a dream for me - walking kilamanjaro... since doing my Duke of Edinburgh awards many years ago I always felt that that was my ultimate goal and all the struggles and hardships on the way will be so much more worthwhile when I stand on top on that mountain looking down at the beauty of this wonderful planet. I want to use every experience and every hurdle to make me appreciate life and live it to the fullest of my ability so that in the words of my friend i too will have 'no regrets!'

I bid you all a good day,

rattles