Last year (2021) I had so many plans for this year especially as my health seemed to be a bit more stable I was looking forward to getting out and about and just living life again but 2 weeks in January that all changed.
I cannot believe we are now in October. Time has been marching on but I feel like I am stuck at a standstill with the world going on and people living life now that most of the COVID restrictions have eased. I desperately want to be part of the world living life.
What started as a tiny hole in my umbilical has turned into a huge saga and challenged me not only physically but mentally too. Right now I feel like I have been let down by the surgical directorate in my health board. I cannot believe that they have left me with a gaping hole in my abdomen which needs packed and dressed 2-3 times a week with no one reviewing me or trying to get to the bottom of what is going on. I fully believe that what happened during the admission in April when I “had” the third surgery is why I have been left.
I know I should have advocated for myself sooner and pushed to get help with the wound and have someone reviewing it that is not the nurses who dealing with the wound on a daily/ weekly basis. I just could not bring myself to do it. The actions and words of the surgeon in April have scarred me badly. I am constantly questioning myself and now fear the healthcare system and what they think of me which is crazy and I need to get over it but for as long as I keep having to have help with this wound it will be a constant reminder of what has happened.
I am at breaking point. I need to give myself a pep talk every time I need to interact with anyone in healthcare. This is no way to live. The nurses who deal with the wound are so good but some days it just all gets too much. Part of me often feels like what is the point in putting all this time in to get the wound cleaned, packed, dressed when no one seems to really care if it gets better or not. The surgeon from April Im sure has no clue that 5 months on and I still have the wound and it has not changed size at all since then. I do not understand how it can just be left like that.
I finally got the courage up to go to the GP and ask for help. I have been referred to plastic surgery and will be seen in the complex wound clinic however that will not be soon as there is a 10 week waiting list just to be sent an appointment and then you would have a further wait for the appointment to come around. I doubt I will be seen this year in the clinic. This fills me with dread and fear. The thought of many more months of dealing with this depresses me because the wound impacts so much of what I do.
Due to the location of the wound I need to be careful what clothes I wear as the wound is right on my belt line, which is also where the seatbelt comes across your lap too. Both of these make my abdomen very uncomfortable when I need to drive or wear certain clothes. I also need to take care with what clothes I wear because the dressing is bright pink so wearing a white or pale t shirt makes it so visible so need to make sure I have darker clothes on. I also cant have a bath which is not the end of the world but I often like a bath to just relax and unwind. The major considerations I have with the wound are that due to it needing to be packed and the location if I cough violently or do any chest physio it pushes the packing out the wound which makes it all very wet and then the dressing gets saturate and the skin becomes macerated so I need to be careful there and finally I am also finding because of the constant feeling of being uncomfy and needing painkillers my head feels like it is in the clouds. I can concentrate on work and focus for any length of time or sleep properly so as a result I constantly feel run down and exhausted which is really frustrating me.
The only one positive out of all this is that due to the restrictions my abdominal wound is placing on me it has meant my asthma is a lot more stable as I have not been out and about as much and also not been exposed to triggers. This is a good thing. I just hope that my lungs have had a time to settle and once my wound it healed and I am back living life again they will remain settled and not go back to their old ways.
2022 has been a real challenge and I know that I am not at the end of it yet. I just need a plan and some oversight to have some idea of how we can get this wound to heal as soon as possible!