Constant Battles....

I am always one to support the NHS and it's staff due to everything it has given me. Without it, I would not be here today. So I will forever be indebted to it. 

However, I have come across some interesting people in my time. The reason I am writing this now, is because still today I have struggles with some professionals. Anyone with an long term illness, or who has a child with a long term condition will understand exactly what I mean. The feeling you get, when you think the Dr's think you're making up how you feel and are dismissive of your feelings and thoughts. 

I often come across people who do not understand my condition, nor my tracheostomy and its needs. 

The very first time that I realised people didn't understand and weren't willing to understand was in 2010. I was accepted into University to do Paediatric Nursing. Something that has always been close to my heart, ever since I was a little girl I wanted to be a nurse. I was accepted into Uni due to my grades, I worked extremely hard and got A's in my A levels. However, because of my trachy I had to see an occupational health practitioner. This lady was extremely dismissing to me, saying I would not be able to do the training because of my trachy and she had no idea what my condition was, so much so, she printed it off of Wikipedia?! The worst place to gain any factual information. No matter how much I argued her points she did not want to see anything other than the fact I could not be a nurse. So because of this, my place was taken away. I was not able to continue with the course. I was utterly devastated. But I moved on and got a job in Sales (something I never thought I would do). After 6 months the same Uni called me and said 'We have made a massive mistake, please can you come and join our next intake' my reaction was 'absolutely not'. I think it was at that point they realised the extent of what they had done. It is effectively disability discrimination. But I was too upset to try and fight. So I didn't. I carried on working in sales. Only for 4 years though, until I found the absolute dream job at Naomi House Children's Hospice as a carer in 2014. The best job I have ever had. The best organisation. With the most wonderful team, children and families. 

There has been many other times, but more to do with professionals not realising how much I understand my body and condition. Every time I get unwell, I always know it is going to be a struggle to get the medication I need unless I speak to a Dr that knows me. 
I have had numerous times where I have had to argue with a Dr to give me the medicine I need, I will always hear the same phrases like 'that is too strong to give you', 'we need to try this first'. When I have given clear examples as to why I have asked for the specific antibiotic. Numerous times, I have ended up in hospital for 2 weeks on IV antibiotics, that if they had given me the antibiotic I asked for in the beginning, could have been prevented. 

At this point Feb 2020, I have had the same really bad infection for 12 weeks - that's still ongoing. I was in hospital on 8 IV antibiotics a day for 8 days... Came out and a week later the infection was back. I then saw a Dr for my 'discharge' meeting for him to say 'everyone gets this on their skin, maybe you've done the test wrong.... but we will try this different medicine for a month see if it works' whist smirking and rolling his eyes when I explain how I am feeling... I am breathless, all. the. time. I sleep so much, I cant get through the day without having to nap, to get a response of 'have you tried mood stabilisers?' Now, I know for a fact I am not depressed, my mood is down because I feel poorly everyday. Waking up with a headache where I am not regulating my oxygen levels overnight, not being able to talk without getting sweaty and out of breath. These things are not normal for me, and those who know me, know this. Others don't, so there will always be a battle. Unfortunately it is something I will need to continue to do, to get my voice heard. 

Anyone who has the same problem, whether you're a family member or it's yourself, you know what is right and wrong when it comes to your illness.. stand up for yourself and do not let anyone belittle you. (My mum even punched a doctor once... hahaha)