Self Management- how does it feel when you can’t.

With severe asthma or actually any type of asthma or chronic health condition one of the biggest parts of living with it is self management. We are (hopefully) taught how to manage living with our condition, take action when things don’t go quite right. We are pretty much left to our own devices.

Day to day, week to week I feel fairly confident in managing my asthma. I don’t always get it right but I do my best. I know I have access to nurses, GP or consultant if I need them and need input to help me manage my asthma.

I have been independent for so many years. I control when I need to take my inhalers, when I step up or step down treatment. I also monitor my lungs by doing spirometry and also peak flow along with assessing external triggers.

All in all I am pretty independent with managing my asthma. Help is there if I need it but day to day I don’t need external input.

Since being discharged from hospital after my recent abdominal surgery I have been frustrated because I cannot independently care for myself. Anything that I have had health wise I have always been able to manage myself- my asthma, my leg etc, but not this.

And it has taken a lot of adjusting.

Since being discharged I have needed the help of nurses daily to help me with wound care. For the first week at home nurses came to the house so I was at the mercy of them. I was not in the position of being able to go out so this was fine. I really cant complain though. They did a fantastic job coming to my flat everyday and then as soon as I was able I had appointments at the GP surgery for wound care. This I do find easier as I am having a bit of control with wound care in that I am able to make the appointments and choose (within reason) when I go. During the weekends the nurses come to my flat too as the GP surgery is shut at weekends.

My surgical wound was left half open to prevent any secondary infection developing and the skin closing over making a new abscess. Each day the wound is packed with stuff to aid healing and then dressed. We had hoped this would only be for a few days but 3 weeks on and it is still not showing much improvement.

I thought that after the wound was healed after a few days I would be able to take over the wound care and of course regain than independence and self management. It is the little things that I find a bit hard by not being able to do my wound care myself such as having a bath or shower. No matter how waterproof dressings are they still go funny after a shower or bath so I need to think about when I have them to coincide with when I am getting my wound dealt with.

I have found this so hard. Due to the nature of the wound I would not be able to pack it myself so I need the extra hands from the nurses. I think it is because throughout life I have always been encouraged to self manage my health and now I cant self manage this aspect.

I didnt think I would find it hard. Part of me also feels guilty in that I was a nurse, I know how to deal with wounds, so I should be able to deal with this myself and free up the time for other patients. I am hoping that this will be short lived and my wound will show signs of healing soon and I will be able to takeover looking after it.

I really cant thank all the nurses who have been looking after me, they have all been fantastic and I cant fault them.

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