It is no secret that the past 22 months have been really hard but I never realised how hard it would be once I had had surgery.
Healing is going really well. I cannot believe the job the plastic surgeons have done. They did need to take my umbilical and I do have a nice 21cm scar but it has closed and I no longer need daily dressings, or packing etc. I don’t need to think about the clothes I am wearing, all that is in the past.
The psychological impact I did not expect. You may think a huge scar like I now have may effect you psychologically but it really hasn’t- I am not really someone who would ever be out in a bikini or crop top so the scar doesn’t bother me too much. It is the unanswered questions I have which I am finding hard. I don’t feel like I have really had any closure. There are so many questions I have that I know I will never get an answer for.
The biggest thing and it is so important that I overcome this is my fear of the hospital that I was treated so badly in. My fear of going to the Western General Hospital (WGH) where everything went so badly wrong. It is a fear that is crippling me. So far anytime I need to go there for appointments I have called and had the appointments changed to telephone appointments. This is fine in the short term but I will need to go in at some point to be seen face to face especially as my respiratory team are based at the WGH.
The fear has gripped me in even more dangerous ways though as it has meant I did get very reckless with my asthma when I had an asthma attack. I went over my allowance of treatment allowed at home for an asthma attack because the fear of potentially going to the WGH was just too much. I could not force myself to get help due to this fear so I kept treating myself at home. I was lucky it was not a bad asthma attack and I came out the other side but I cant take that risk again, the next time the outcome may not be good at all. After I got over the asthma attack I freaked myself out by how much I did at home without getting help. Once I realised this I knew I needed to speak to someone to make them aware of how bad the fear I have is. I spoke to my GP and made them aware of what had happened and how I was scared of going to the WGH but also how scared I was about what I had done. I feel stronger for telling them so they now know just what impact the events of the last 22 months have had on me and they are aware of my fear of the WGH.
We agreed I needed to find some closure for everything so I could try and put what has happened behind me. I need to do this so I can try and build my confidence and trust back in the WGH. To this point I have not had any closure or any questions answered in a satisfactory manner so I am taking steps to try and rectify this. I am going to tell them why I need answers because I need to be able to go to the WGH and feel safe there. I cannot live in fear of it.
I have also come to realise too that there can always be situations where as someone with severe asthma my adherence to a treatment plan can be tested. Every day we hammer home the importance of adherence to our asthma medication and personal asthma action plan but sometimes there are things outwith our control that test our ability to remain adherent. I try my best to ensure that everyday I try and take all my medication and follow my plan but this has made me see that even someone who tries to be dedicated to ensure their asthma is managed as best as possible can still hit points where it is just not possible. It has made me realise that perhaps we need to explore more with people why they may or may not take their medication so that these issues can be addressed to encourage the person to do as they need to ensure their lungs are kept in good health.
For me going forward I know I will never or at least not knowingly abuse my personal asthma action plan. I cannot afford to do this as my team need to trust me as much as I need to trust them which is one of the reasons why I told my Dr what had happened to ensure things would not get like that again.
I will continue in my quest to find closure so this whole thing can be behind me. My scar will be a memory which symbolises what I have been through and what I managed to overcome, and the strength I had to overcome everything.