Realisation
Coming to realise you're not 'normal' is tough. Not always being able to join in with your friends and be able to do everything you want to be able to do and should be able to do.
Growing up my mum and family kept me in a little bubble, so to speak. They made me feel like my life was 'normal'. No matter how hard they tried, it was still tough going through secondary school with lots of friends (wonderfully understanding of my condition) and not being able to socialise after school and join in with the jokes after a weekend. I did feel left out, but I just had to deal with it. It wasn't safe for me to go out and about as none of my friends would have been able to help me during an emergency.
As I got older and could do my tracheostomy care easily without anyone else around, and understanding when I need help, I was able to go out and socialise without a carer and my mum. A sense of independence. Something amazing, yet very strange. It was great.
When I met Penelope's father, he kind of just fit into my life and understood a lot when it came to my health, visiting me in hospital before we were in a relationship. I guess he was very much like my family, making it seem 'normal'. But for me that was my normal, and he just took it in his stride.
Over the last few years, I have come to realise that my my life isn't as 'normal' as I thought it was before.
It's hard to work out at the moment whether I'm just going through a 'rough patch' or whether my condition is deteriorating and this is me now. The last few years my health has been extremely bad, compared to how it has been in the past (apart from when I was first born). 2017, 2018, 2019 and the start of 2020 has shown great challenges, and mentally it's a struggle. Sepsis, recurrent chest infections, pneumonia, kidney infections, trachea infections and palate issues to name a few. I try my best to stay positive and to not let things get me down, but it is hard.
Is this me now?
Is this how I am always going to be?
Will I never be able to walk and talk at the same time?
Will I never be able to walk my daughter to school?
Will Penelope always ask, 'Mummy why do we always go to the hospital?'.
These are the standard questions I think of, as I sit here and type away. I often feel dramatic, but then I need to give myself a reality check, this is not what a 'normal' 29 year old should be going through, seeing all my friends do things most of the time I can't do. I always power on through, continue working and being the best mum I can be. But sometimes I end up burning the candle at both ends, and end up being very unwell and in hospital - where I can't work and can't see Penelope that much, so this is where I need to be more realistic with my own journey and accept that sometimes I can't do everything.
Now, don't get me wrong I am fully aware that my struggles are minimal to what a lot of other people have to go through. I just wanted to share with you some of my struggles, as I know I am not the only one out there with similar thoughts and worries. I suppose we need to try and make it more normal, to speak out about our feelings without worrying that you may be a burden and annoying to others.
Growing up my mum and family kept me in a little bubble, so to speak. They made me feel like my life was 'normal'. No matter how hard they tried, it was still tough going through secondary school with lots of friends (wonderfully understanding of my condition) and not being able to socialise after school and join in with the jokes after a weekend. I did feel left out, but I just had to deal with it. It wasn't safe for me to go out and about as none of my friends would have been able to help me during an emergency.
As I got older and could do my tracheostomy care easily without anyone else around, and understanding when I need help, I was able to go out and socialise without a carer and my mum. A sense of independence. Something amazing, yet very strange. It was great.
When I met Penelope's father, he kind of just fit into my life and understood a lot when it came to my health, visiting me in hospital before we were in a relationship. I guess he was very much like my family, making it seem 'normal'. But for me that was my normal, and he just took it in his stride.
Over the last few years, I have come to realise that my my life isn't as 'normal' as I thought it was before.
It's hard to work out at the moment whether I'm just going through a 'rough patch' or whether my condition is deteriorating and this is me now. The last few years my health has been extremely bad, compared to how it has been in the past (apart from when I was first born). 2017, 2018, 2019 and the start of 2020 has shown great challenges, and mentally it's a struggle. Sepsis, recurrent chest infections, pneumonia, kidney infections, trachea infections and palate issues to name a few. I try my best to stay positive and to not let things get me down, but it is hard.
Is this me now?
Is this how I am always going to be?
Will I never be able to walk and talk at the same time?
Will I never be able to walk my daughter to school?
Will Penelope always ask, 'Mummy why do we always go to the hospital?'.
These are the standard questions I think of, as I sit here and type away. I often feel dramatic, but then I need to give myself a reality check, this is not what a 'normal' 29 year old should be going through, seeing all my friends do things most of the time I can't do. I always power on through, continue working and being the best mum I can be. But sometimes I end up burning the candle at both ends, and end up being very unwell and in hospital - where I can't work and can't see Penelope that much, so this is where I need to be more realistic with my own journey and accept that sometimes I can't do everything.
Now, don't get me wrong I am fully aware that my struggles are minimal to what a lot of other people have to go through. I just wanted to share with you some of my struggles, as I know I am not the only one out there with similar thoughts and worries. I suppose we need to try and make it more normal, to speak out about our feelings without worrying that you may be a burden and annoying to others.
Read your blog which was an inspiring read despite me already being in the medical field, keep your smile and perseverance going, there is lots in life to be thankful for !!
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