In this blog I openly talk about my asthma and how it effects me. The highs and lows and everything in between. One thing I am not so good at though is actually talking in real life about my asthma. I can do the factual stuff…what my meds are, what my pf is, my symptoms e.g. wheezing etc but getting down to the nitty gritty and how I feel about it I always answer with one of two words. I either say “I’m fine” or “I’m okay”. According to my step mum if I answer any other way things must be bad. To me saying I feel awful is almost giving in to asthma. I am never (touch wood) really ill with anything other than my chest and it is so extreme its rubbish and hard to admit when you are otherwise pretty fit and well. Which to say I am fit and well is a bit of a stretch but if it were not for my asthma then I would be really fit and really well. Everything that is wrong is as a consequence of brittle asthma!!!
Back to the point of the post.
One thing i have learned over the past 10 years which I want to share as it is so important. As much as my asthma is pretty visible I do try to hide just how bad it is. When it comes to work or university this is not something that I should ever have done. Through my first stint at university I really tried to hide how ill I was. Despite being in and out of hospital I continued to try and play football. I tried to keep up with lectures and never applied for extra help. This was a huge mistake. By pushing myself harder and harder probably made things worse.
Second time round at university to study nursing I was more open. I went to the disability services and told them about my asthma (and dyslexia) and got the support I needed. This then lead into my career and my employer knowing about my asthma. I am not sure how open I would have been had I not had an attack at work and also had to miss some time on placement because of hospital admission. So as a student my boss to be had seen me when I was bad and knew what it was like. This was good. I didnt have to talk about it but everyone was aware.
I always thought that it would prevent me from getting a job and part of me wanted to hide it so no one would know. But I was not able to do this. Over time i have come to see that by acknowledging how bad my asthma is I will actually get the support I need and I think my employer appreciates being honest.
Working in the NHS I am always worried I will get redeployed but I have had such great support from my charge nurse, clinical nurse manager and occupational health. I think my work ethic has helped keep me working where I am but also by accepting the support that they offer has meant they can see I still want to work no matter what but that I am acknowledging that I can’t always stay where I am.
Seeing occupational health to me is such a hassle. It is a tick box exercise and just another hospital appointment I need to attend. I never like to attend hospital appointments on days I work as do get quite worked up by them. By attending the appointment I am showing I am accepting the help but also I do tell them how I am feeling and can show them how I am trying to get my health better by getting second opinions etc. This to me is important because I feel it shows them that I am not happy with the way my health is and want to do whatever I can to make it better. If I just gave up and sometimes I do feel like it, then there is no point in my employers and occupational health putting the effort to keep me in the job I love.
I think what I am trying to say is that no matter what when you have a physical condition no matter how hard you try you cannot hide it. I have had my charge nurse see me in the High Dependancy Unit fighting to breathe and try to hold a conversation. You can’t hide from it when you work in the same place that your a patient. You also never know when asthma will strike so I have learned that way not to hide it because then people know what to do and what to expect! By talking about it with the correct people you can get the support and not get left floundering trying to keep yourself at work but also have a life. This is one of the big things I was lacking. I was so focused on keeping myself well enough to work that my days off were spent in bed trying to get better to face the next day. I now work shortened days which lets me enjoy my days off and not be totally exhausted.
I will still never really admit how awful I feel sometimes as on a day to day basis people don’t need to know it. They don’t need to know about the constant pain in my chest or that my chest is so tight or that I didnt sleep a wink because I was either having a neb or up coughing. People don’t need to now that because it is part of everyday life. It would be the same thing over and over again and never really saying much positive so by saying I am fine or okay is so much easier and doesn’t invite questions that I don’t want t answer!!!
Opening up to my bosses and occupational health is a big step. I want to be able to say more easily when I am not doing great but just hate complaining. Writing here I can say exactly how I feel as others who read this will often understand as they are either in a similar situation or have an interest in asthma and want to learn how someone actually feels and what it is like to live with on a day to day basis.
Be honest about your health. You don’t need to wear a post it on your head saying your ill but tell the relevant people and get the support you need. I am sure I could have had a lot less stress and perhaps less hospital admissions if i had been more open and honest about my health all those years ago!