Floundering a little

Just now I feel like a swan in a pond. Everything looks ok on the outside but under the water it can be furiously paddling to stay a float.

In January 2022 when I developed the urachal cyst never did I envision what has unfolded let alone still be battling 14 months later. I am still trying to mentally get my head around it all and it is tough, tougher than anything I have experienced so far and this includes life threatening asthma attacks.

Everyday I think I am getting my head around what happened in April 2022, when the surgeon accused me of deliberately infecting and making my wound worse, but then something crops up and I realise I really have not got over it.

Living with chronic illness means you need to have faith and what’s more trust in the health professionals looking after you. Ever since April I get knots in my stomach at the prospect of going to appointments. I never used to worry about any kind of appointment even when I was in the waiting room waiting to go in and see the ophthalmic neurosurgeon who had done an MRI scan to check if I had a tumour which was causing my loss of vision (I didnt have one). I wish I could forget about what happened and go back to my old self which didnt fear health professionals. It is amazing the impact one person can have on your life and the way you see and feel something.

Every other day I am getting myself so worked up because I have an appointment. My wound is being dealt with every other day by a great nurse and even though I know her now, know that she does not believe I have done anything to the wound I still get worked up and have to talk myself into going to the appointment. It is crazy and totally irrational but it fills me with fear. I think what does not help is I had an appointment with a psychologist from the hospital which did not go well. I was hoping they would help me work through everything and give me some tools to help deal with what has happened but I left feeling more confused and more anxious about seeing health professionals. During the appointment I felt like I was having to defend myself and prove to them what actually happened. I was livid when the psychologist suggested that perhaps the reason my wound was not healing and getting infected because I could be tampering with it in a dissociative state. I was really short with the psychologist when he said this as I don’t have the dressings and stuff for wound care at home so how is the dressing staying intact if I was tampering. The psychologist was probably just trying to look at it from both sides to try and see where the surgeon was coming from but they did not handle it well at all to the point I do not want to return as I left just wanting to scream and cry (and I did cry as I was driving home. I had to stop and pull over to compose myself).

As time drags on I keep losing more hope. When this all first happened it was short term and would be better in a month or so. A month or so came and went, then more months, then a year. I keep hoping with every dressing change when we peel off the dressing we will see a positive change but I don’t. When it comes to measuring the wound I keep my fingers crossed that there might be a change but since May 2022 there has been zero change, in fact it has got slightly longer. I am losing hope that it will ever heal. I cant plan to do anything because of it. At the end of last year I thought this year I will be able to go down south and see friends who I have not been able to see since before COVID but I have not been able to. At this rate I won’t be able to do much this year. In September I have a big conference but at this rate I won’t be attending it as I have wound care every other day.

One of the biggest things I am struggling with is the lack of ability to concentrate. I just cant focus on things. If I get sent an email with a patient informations sheet to review I find it takes me forever to do. It is even little things like if I watch a TV program like Silent Witness I end up watching it about 5 times by the time I have rewound it constantly to rewatch something that I didnt pick up and it was not that I had fallen asleep and missed it. I have so many plans for my advocacy work and different blog posts to write but when I sit down at my laptop I cant get the words out. Even writing this has taken me so much longer than it normally would.

Part of me wonders if I just stopped going to my appointments for wound care and left the wound be what would happen. Of course I would not do this but what I am doing is not working and the more it goes on the more it is dragging me down. If I ignore the wound would it just go away. I joked with the nurse that I should just put bathroom sealant in to close it all off!

Living with severe asthma has its challenges but with it I self manage. I can increase my drugs as I need and also decrease them too. I don’t need to rely day to day on anyone for management. I have my team who is there to support me as and when I need and oversee my treatment but the day to day it is me who has control. With this wound I have to rely on others, it is not something I am able to do myself or be able to learn to do myself due to the complexity of it. I would love to be able to care for it myself but it is just too risky so I need to rely on others. This has taught me a valuable lesson and I will never take for granted the freedom I get from being able to self manage my conditions.

I will get there and there will be an end at some point, but just now I need to take it day by day and try to be kind to myself. Everyone has their times of when things are just a bit overwhelming but getting this out my head hopefully that will help.