When I woke from the coma and not being able to feel my leg never did I think that a year on there would be no improvement. To be honest I don’t think the medics thought it was anything more than temporary too.
Over the year I have experienced a lot of different emotions and still struggle coming to terms with what happened. The attack I had was not the worst I had ever had but the consequences of the attack are. The year has been a rollercoaster of emotions, a year of learning and adapting to having a visible disability. The year has also taught me a lot and I will come on to it later but it will mean my advocacy takes a slightly new route.
Over the years living with severe asthma I have been through every emotion I think you can but I have learnt to deal with it and adapt to how I am feeling on a given day, knowing that it is temporary and perhaps tomorrow I will feel better and can get on with life. I have stopped being angry, depressed, doubtful, frustrated, afraid. I know my asthma is with me for life. I still get days when I find it hard to cope with and will feel a bit low in mood about it but I am not consumed by negative emotions when my asthma flares up and stops me doing something I had planned.
But with my leg I feel I am back to square one but the difference with my leg compared to my asthma is that it doesn’t change. My asthma allows me to feel better on some days and worse on others but my leg is always numb from my knee down, always giving me the most horrendous burning nerve pain from my groin to my knee, and I never have control of my foot and my fine motor control in my knee is not great.
I have also been left with so many questions and since my last hospital admission to Ninewells I have found I have even more questions and what ifs.
Hindsight is a wonderful thing.
I struggle to get my head round certain aspects of my care from that admission. If I was not a young person, and if I had not been a patient who was regularly would I have been treated differently. I felt like the issue with my leg was dismissed and brushed off. It wasn’t taken seriously for days. It was not until my consultant came and saw me that something got done but even then not much was done I had a scan. It didnt seem to raise any alarm bells that I couldn’t feel my leg below my knee, had excruciating pain in my groin and at 33 I was needing help to stand up from the toilet. I often find myself asking if things might have been different if action was taken sooner. It was not till I was discharged and saw my GP that anything got moving. She got in touch with neurology who immediately called me as they were so concerned by what was going on. Since then I have been having physio and am desperately trying to improve my mobility.
What I have learnt.
I need to be more assertive when something is not right. It might have meant things would be different now. I might have got the feeling back in my leg who knows, equally I might not have but at least if I spoke up more about it then I gave myself more of a chance of recovery and I would not be left with questions.
I also wonder how many other young patients suffer injuries that might be dismissed and not acted on because they are young. For me despite being in ICU I was not seen by a physio. Not even once. Again it took my GP to see me before I was seen by a physio too.
I thought I had kind of got over my anger a bit until I was admitted to Ninewells hospital the other month. This time I was able to verbalise my needs and say to someone if something was not quite right. Thankfully there were no issues like before but there was a lot of interest in my injury to my leg. I was seen straight away by the physio team and seen each day to make sure my leg was ok. I was given exercises to keep my muscles strong and they helped me to mobilise. They also let the nurses know the best way to help me mobilise and keep me as independent as possible too. I was also offered the choice if I wanted to see the chest physios too.
That whole experience in Ninewells was in stark contrast to Edinburgh and thrown up so many emotions again. Living with my leg that really does not function well as a leg anymore, needing to use a stick, falling and tripping over are daily reminders of this but I had come to terms with this and accepted this was my new way of living.
I need to make sure from now on that just because someone is young they do not miss out on services that they require. We require to see a physio just as much as an older adult does. This is the same for seeing an OT as well.
I now need to build myself up move on once again with a renewed focus.