My last post about World Asthma Day I spoke about the barriers to reducing asthma deaths and the behaviour of asthmatics when they are in difficulty. I like to think I am a proactive asthmatic and will recognise when I am not well and when I am struggling but Im not sure I am. Its not that I am being pig headed and deliberately avoiding seeking medical help but I jus don’t realise how unwell I am.
Speaking to someone recently who read the WAD post said I do a few of the things that I commented that others do and push my limits and don’t seek help early. I had a phone call from the respiratory nurse at my GP surgery who also commented about how unwell I was when I attended there before being admitted. I didnt actually think I was that unwell but clearly I was.
This got me thinking about my own and other people who have asthma like I do, perception of illness and when are we really unwell and when are we just a little bit. I did pose this question to a couple of groups I am in and was reassured by some of the answers as it meant I wasn’t the only one who was thinking as I do. The post I made was this:
“Does anyone find they have a warped sense of being ill. Someone recently said that I leave it too late to get help or I should stay off work earlier than I do. But for me when I feel a little under the weather I don’t bother staying off work and part of me wonders if because I have been in ICU and so many times close to dying from asthma that I base feeling ill on knowing what the worse feels like.
I don’t know how I can change my perspective on being ill if that makes sense. I understand that if I am short of breath at work my colleagues are going to worry but to me being a bit puffed is normal and nothing new.
I don’t really know what I’m trying to say but I’m clinging to my job by the skin of my teeth and almost save being off sick for when I’m in hospital if that makes sense. I worried that I’m doing the wrong thing. It doesn’t help that pred at a silly high dose is messing my brain up and feeling totally insecure with my asthma because of the bad care I have had over the past few years which has only just come to light!!”
Many others commented that they could have written that post themselves as they feel exactly the same. When you have been very ill needing ICU on so many occasions your interpretation of being unwell changes. I relate a lot of how I feel to how I felt when I have been in ICU and use this as feeling the worst I could so when I just feel a bit chesty I really don’t think it is that bad because I know how much worse I could be. Its difficult as well when it is a gradual decline you adjust to it and pace yourself and then there is always that wait for the higher dose of steroids to kick in.
Part of me wonders if we compensate more than we should. In all honesty I didnt think I was that unwell but then speaking to the respiratory nurse who told me I was very acute and was hell bent on driving myself to the hospital I wonder how much my judgement was impaired from hypoxia and having been in status asthmaticus (as they seem to call it) for a prolonged time. It is so hard to tell when is the right time to give up and either not go in to work or go and get medical help when you have experience of being so much sicker and you really don’t feel that unwell.
I know this is not just asthmatics that feel this but anyone with a long term condition will always compare themselves to how they have felt at their worst and their worst they may not have felt yet and therefore “worst” changes and so you go to work when others may not feel like you should be at work or should be doing something. Its a really tough balance when your health is so unstable. I know I do it and many others to but when you have a wheeze more that 75% of the time you learn to block it out because it is one of the most irritating noises ever!! So by blocking it out you are also blocking out how you feel and how bad your chest is.
I still need to work out a plan or way to alter my way of thinking and my view on illness and being able to evaluate how unwell I am and if I am well enough to go to work or if I need to stay at home- but even as I write this I am thinking but then I will be off work on more days as there are often nights when I have been up all night with my chest and breathing and its still not great but I feel I should be in work and would probably go to work. I guess its hard to change when you know your health isn’t going to change that much- although fingers crossed seeing a new consultant who seems to be good will help and that I have appointments already with cardiology, allergy/immunology, psychology and physiotherapy can only be a good thing. My GP and resp nurse at the GP surgery have also managed to sort it that I will always get admitted to the hospital my consultant is based at which means no more A&E unless its between 9pm and 8am!!