The uniform that saves me, is it drowning me at the same time?

Since my attack at the end of November/ December I have really struggled mentally and physically. The initial recovery was good, my lung function returned to my normal fairly quickly and my energy stores were up, I was able to get about and get on with my daily routine without much limitation. Reducing steroids was a bit hairy but with the help of my consultant and asthma nurses we managed to keep on top of things although the reduction has only got as far as 30mg but hey its better than 60mg.

lsjdeyxt36mmcfdswtiw.jpg

I was confident this speed of return was due to the new treatment I am on but now I am not sure. I think a lot of it probably was at a basic level. The treatment helped me get back to my baseline to function quickly but Im not sure it got me to the baseline for work. I was excited to get back to work but I wonder now if it was too quick and the timing didn’t help. Looking back now despite reduced hours apart from the first week I was never able to get away on time because there were patients who needed to be seen and I was the only one about. I already arrive 30 mins early for work (this is my choice) because I have worked out that this is when there are the least number of people smoking outside the doors mainly due to breakfast and drug round on the wards! Many say that I can get the ward to see the patients etc but being a patient and having had this done to be it breaks the patient nurse relationship and you lose confidence in them so for me it is not an option.

But i now need to put my own health first. I keep going round in circles with it and I love my job and love working with the patients etc but then I get my body into such a state and I often don’t realise it until I am told. Last week I noticed patients commenting on how awful I looked and should I be in work, the people I was in the lift with would ask if I was ok because I was so wheezy, the finally after spending a weekend in bed and thinking I felt better I went into work to be sent home by one of the other charge nurses because I felt so awful and sounded it.

Part of living with a chronic illness is that you don’t often know how bad you are feeling until your on your knees. I know a lot of patients have said the same that they didnt realise how unwell they were until we got them on a treatment and it is once they are established on this that they really see how unwell they were. I think is how I feel that things just decline slowly and it takes a huge attack or event to stop the downward spiral and start getting better again.

Going back to the title of this post. I love putting on my uniform, I worked hard to be able to get it and then be able to keep wearing it. It is also the uniform the nurses who look after me wear as they get me back on my feet and my lungs working a bit better. But then I also wonder if my drive and love of work is also what is causing me to not get to my full potential of wellness. I am really torn with what I should be doing and need to stop and evaluate what is important to me and what is in my best interests.

I have an appointment with my consultant this afternoon where I am going to ask his opinion as I really cant continue as I am. I am back to the point of living to work and that is it. I love my job but need to have more to life than work.

I wish my lungs felt as good as these ones do!!!!

T%4mA1kDRM+dXdjf9sSi7Q.jpg

Are you your illness/ condition?

Recently in a lot of groups, on Twitter, Facebook and Instagram there have been various projects or statement about not being your illness/ condition and not letting it define you. So many people have been jumping on this and saying how they are not their condition, or that their condition is part of them but not who they are.

I’m not sure I agree with this. Asthma has dominated my life and dominated it even more so for the last 11 years. If I was to say I am not my condition or my condition does not define me would be a blatant lie.

I am my asthma and asthma is me. I will never be able to get away from it or have some memory of asthma around me everyday. As terrifying as having asthma is, as life limiting it is I am embracing have it. There are some really rough days where I wish I didnt have asthma. Those days where it is a fight to get every breath and just drinking is a mammoth effort I do wish I didnt have asthma. Then there are the days when having asthma doesn’t inhibit my ability to do anything as long as I take my inhalers, tablets and nebulisers. Those days are great. With the good days come the bad too.

Wishing for a cure is something I do everyday. To have a cure would mean my body is not crippled by side effects from taking prednisilone, my heart rate would drop below 100, I wouldn’t have a constant tremor from relying on short acting beta agonists, going outside I wouldn’t have to worry about what may happen which could provoke an attack, i wouldn’t need to plan my day around medication, I wouldn’t be on first name terms with my pharmacist, I wouldn’t know all the nurses in various respiratory wards around the UK. These are all things I wouldn’t have to do if a cure was found for asthma.

BUT

A cure is not going to come in the near future as nice as it wold be so until then I embrace having asthma. It is me, it is a massive part of my life. I hate it but at the same time having asthma has given me so much to live for. Just by having severe asthma I have done so many things I never would have thought about doing. My life is now defined by having severe asthma. My work was chosen based on my asthma, my volunteering is based on having asthma, my work with the research centre I would not do if I dint have asthma, my involvement in my lacrosse club would not be what it is if I didnt have asthma. I have no idea what my life would be like, Im sure it would be very different but would it be different in a good or bad way? Its a question I can never answer and I don’t want to know the answer.

The only thing I do want just now is to not have so many life threatening attacks which land me in the resus room and weeks in hospital. Those are fights I could do without. I would also love for my consultant to be able to over me different treatments to try and not need to take my case to a group of experts to try and find some kind of treatment to give me some life back.

In all I am my condition. To say Im not would be a lie. But I am proud to be defined by my asthma. Not having asthma I wouldn’t have done all I have. It would be nice for it to be a bit better controlled but in the future it will be.

What I want to say is all those who don’t want to be defined by their condition think about what you have done because you have it which you wouldn’t have done otherwise? Our conditions are part of us. They make us who we are. The stigma around having them is hard but when you embrace it mentally you can deal with it so much better!