Fighting for Breath

I Have Brittle Asthma. Everyday can be a battle to breath and survive. This is a space to share, rant and come to terms with my everyday challenges and thoughts.

Birthday

Today is my 23rd Birthday not quite a Birthday spent how I expected but it was ok as you get older then birthdays aren’t the same and when you don’t have loads of friends to spend it with you you rely on your family and the small thinks making it a different day.

I was meant to be working the evening today which usually is good fun but work are saying I am a risk to myself and others and want me to speak to them and is now a very great risk of losing my job as adjustments have also been made.

I am spending the day at home watching DVD’s and having a Chinese takeaway, something I have done every year for the last few. I will go out somewhere for the day at some point when the Christmas sale rush calms down and the weather is better.

We don’t get much for our birthdays I got some warm pj’s, a me to you nooder for my car, a shirt and nativity on DVD plus some money and a balloon that I am enjoying playing with. As my sister says small minds get pleasure out of the simple things!

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Normal Life

I have been struggling these last few weeks with the cold and the only times I have done anything mildly active is when I go to work this has lead to me becoming ill at work a fair number of times. Work have called me in for a meeting with my manger and HR to discuss my welfare and they want me to think about where I am working and to think of if anywhere else could be better for me. I don’t think there is I think its my work ethos that is making me ill as I wont let my asthma beat me. I want to work it helps my mental health and gets me into a routine.

My plan is to list the things I do at work and where the issues are and what can be done, but I know nothing will or can change. Without my asthma improving I cant considering getting a new job. my subcut pump application been turned down and I have to wait until February to hear what next if anything but something has to be done soon otherwise I might as well give up. I am already getting depressed and have self-harm thoughts as I don’t know what my purpose in life is at the moment. Work don’t want me in until I have seen them so having a week of forced leave.

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Perspective of Health

I am due to go on a weekend away with Asthma UK for young people with asthma so I have been getting to know people before so isn’t so scary! Part of this getting to know you is been comparing stories and I have noticed that people in my option make there health seem worse that what it is. There is not doubting my asthma is severe and to others it is, i tend to make my asthma sound better than it is but it impacts my life. However others the label severe asthma almost seems like a status symbol. There is a step wise management of asthma which is a good indication of how sever asthma is mainly by what medications there are on and I have noticed many people seem to thing there asthma is really bad when I thing well what about me. Here is an example a young girl on step 3 out of 5 (I am off the scale) had described her asthma as severe though has no mention of hospital admissions which is also another indication. In asthma the number of ITU admissions is important however I believe this is wrong as there has been times when I felt that a ITU admission was possible but been managed on the ward it all depends on who See’s you.

This comparsion has got me thinking how do you measure good or bad health, to me my health is bad but I can still work and get around which is more than some but spend allot of time in hospital so I know to some people I could be seen as of OK health. There is not measurement on how bad health is it’s all in the eyes of the beholder.

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Reflection

As the year is coming to the end I cant help but reflect on 2010. Overall it hasn’t been as bad a year a 2009 as I haven’t had so much heartache but I haven’t put myself into anything in case I lose it. I have been in hospital 16 times this yer compared to 27 times in 2009 however the times I’ve been ill I been sicker and in for longer. my general health isn’t as good as it was last year but more settled in my personal life. My life is still rubbish compared to what it could be but getting more positive things might get better but not sure how long this will last.

I decided i am going to ensure that 2011 is a better one, I hope I can get my lungs in better shape by losing some weight and getting fitter. i also hope to have a career sorted or at least decided. I want to travel and go away a bit more.

After I was discharged from hospital I phoned my specialist unit and had a good chat with the asthma nurse and she cleared allot of things up, the more recent problems I have been having show that my asthma is not being controlled and the consultant knows this but has to see me to discuss options before changing anything so will be heading up there in the new year to do this. However the pump that he felt was a good option has been turned down by the PCT so that’s one less option to try. But is pleased that my attacks aren’t as severe as they were thanks to the physio.

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Christmas

I thought I would tell you about my christmas day.

9am I was woken up by my sister its become tradition we open our stocking together and this year with being in hospital until the night before we did it slightly later than usual. We opened them in our mum’s room when they had there’s. After that went back to bed!

I got up at about 11am and had a shower, I didn’t get dressed up just went for comfort! My mum was at church so chilled for a while. After coffee the presents came, I dished out the ones I brought as most weren’t labelled! I got a roo teddy, big hoodie, scrapbook kit, wheely bag, pj bottoms, warm pjs (that are too big), nail kit, bath salts, ghost dvd and money.

Christmas dinner was ok I had a quorn roast with all the trimmings followed by mince pies.

Afternoon nap in frount of the TV followed and I got tea ready by the time Doctor Who was over, and played a game after dinner and had an early night.

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Circles

I just feel at the moment going round in circles. I have hospital doctors that see me when unwell yes it is asthma bad then respiratory doctors telling me otherwise. My consultant wont change anything the hospital I go to doesn’t so just going in and out without anything being done and had enough. its not like I am not trying I do my excesses, when having an attack I do stay calm and dint rush to hospital. I avoid just upping my medications without a doctor telling me otherwise. I know my lungs and know when its VCD and when its asthma and it is asthma. No saying it doesn’t play a part i think my asthma triggers it off and then the VCD plays a bigger part. But if my asthma is better controlled then my vcd should be

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The need to breatth

You need to breath to stay alive something I don’t do very well at the moment as I have been admitted to costa del nhs for the 3rd time in a month. all attacks have been at work so I need to consider my position if it is best for me to continue.

The main issue at the moment is the lack of interest in my specialist unit to adjust anything to make me better they just seen to have an idea in their heads and then not bothering to listen to others and just leaving me to struggle, a month times appointment turns into 3 months and my local cant do anything without there saying so. The nurses are rude to me when I do end up in hospital which makes me angry, I don’t like being like this it has ruined everything I want to be able to do things and hate the attention which they don’t seem to grasp that. I am now worried about the long term as they haven’t told me anything and they need to get things moving now before it is too late. I think it is time for me to have a unit closure to home to improve communication between the local hospital.

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The Truth about my asthma

Some people seem to think they know asthma better and have questioned me on things so I thought would set the record straight.

I have had asthma for 2 years and tried a number of things and with all Doctors they sometimes run out of ideas or explanations. I was in hospital in September and my consultant said that things allot of my problems are to do with dysfunctional breathing and I was seen my a physio and since then I haven’t managed to get back to the hospital to see my consultant however the physio has watched me during an attack and with looking in detail into every little thing says that the remaining problems with night time and the attacks are asthma based.

Control is based on the eyes of the person for me I am not controlled it interferes with my life to an extent it is annoying.

Every time I go see a Doctor they tell me a different thing and yes I do end up being seen in different hospitals and I have been very ill at times. Once my parents were rung in the middle of the night as I was so unwell and due not being the textbook doctors have to watch me as I don’t follow a trend.

So for people out there that thing that I am not an asthmatic just as I am not like you and don’t react the same doesn’t mean I haven’t got asthma. I have asthma that is confirmed. I am just at the beginning of the road where I and doctors are still learning about how it manifests itself and how best it can be managed.

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Christmas Cheer

With just over a week until Christmas, most people are looking forward to it but for me its just another day. Christmas when I was younger seemed so much better we used to do the same every year and we never used to watch the TV and used to play games all day. Now it seems to be all we do. No we don’t go away, we don’t go to church together as I cant stand the smell we don’t even get up together. The only thing that is the same is me and my sister open our stockings together.

This year I am working, I felt that I might aswell let the people that do make plans and use it as a special day have the day off and its triple pay. We are having our Christmas meal on Boxing day in the evening and we aren’t all going to see the family as either I am working or my sister is working.

This time of year always seems to get me down, forces me to look back on the prevous year and always upsets me as I have so much going wrong in my life it reminds me of what I used to have and what I have lost.

As a family we aren’t close. We don’t all play games together and ill usually end up having some sort of argument at some point as we aren’t used to spending time together.

I still haven’t finished my Christmas shopping been to ill to go out and its too cold. Just got one more I have to get before and I know what I am going to get.

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Home

I managed to get home and now all I seem to do is sleep and then cant sleep at night, a side effects of steroids is the lack of sleep but once I am asleep I don’t wake up as much. I think this means that my maintenance dose of steroids isn’t seeing me until the night. When my mum said this to the asthma nurse she said well we don’t want her on more as we are thinking about her long term health. However I wont have a long term if this continues there is already some scaring to my lungs and this could cause me not to be able to absorb oxygen. That is if an asthma attack doesn’t kill me first. The doctor told me that I am one of those asthmatics that will cause problems when you least expect it and need close observation as things change rapidly and since I am not a typical asthmatic I would benefit from a closure asthma unit to improve communication and improve my care as will be able to see me easier and might be able to get me transferred there when unwell. However part of me doesn’t want to start again incase I get no-where.

I should be returning to work on Sunday but I seem to be getting more scared than ever about work, work itself isn’t making me ill. I think its as at home on days off I don’t do anything where at work I am active. I am also worried about people’s thoughts about me and my ability to reach my potential.

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