Just when I thought I was getting the treatment I needed to help me and keep me stable, I have been left. It appears I have to go back to living the way I did a few years ago........
I think the NHS is amazing. I owe the men and women working with the NHS my life. Sadly though like so many things in life there is always those people you don't want to come across or interact with. My consultant, lets call them Dr D has been my consultant since I was 16/17 and has made so many important decisions regarding my health. Sadly I no longer trust them, like them or feel safe and confident with them. The problem with Dr D is that they are too confident yet lack the knowledge needing to back such confidence up. They always want to think they know everything but most importantly, they want you to know they know more about you and your body than you will ever do. You see I live with my body 24/7 would you believe, this means I've got quite good at knowing my body. I know if something feels right or wrong, I know if a treatment is helping or is a waste of time and I most definitely know I MUST be included in the care of MY body. The second problem is one of the more frustrating aspects of Dr D's "Technique" as they are all over the place and confusing. It's like they throw out possible treatment and just wait until you say yes to one of them. They also like to make plans or suggestions but forget they even said anything! They seem to change something every time i see them just for the sake of changing something. One minute they like a drug and the next they don't. But I'm just left here in the middle of the shitstorm without an umbrella. This is my life so please please please respect it and include me in it! So then finally the reason I am so angry. My consultant has stopped my TPN but has not restarted Jej feeding and tried to cut a lot of my drugs even the ones they are not allowed to touch. You see my consultant has made the decision I can eat again, not only can I eat again but apparently they don't think I'll need the tube anymore......... They cancelled the PN which means they have also cancelled my IV anti reflux medication. Also they want to cut my anti sickness medication [but I "apparently" agreed to this] Needless to say I'm a little bit of a mess at the moment. I have been trying to eat as "normal" but I just can't do it. When I eat I get severe pain,I become very bloated, I reflux, I feel nauseous and I vomit. Then throughout the day I feel sick and can feel the reflux. I can't believe after all my struggles and problems over the last 2-3 years the same person who fitted the tube is now saying I don't need it. But one of the reasons they gave me as to why I needed to get rid of the tube was because it's ugly....... This makes me sick, that a consultant can just make comments like that about my body and the thing that has kept me stable for so long. I am the one who makes the decision as to wether my tube is ugly or not. Thanks to all this I've been a nightmare to live with. For the past week I have been on holiday in Northumbria with my family and Matt [My partner] Thanks to the timing of my consultants changes it meant I was on holiday feeling awful. When I feel upset, worried, angry or unwell I become depressed, irritable and grumpy. This means when I need peoples support most I am pushing them away with my behaviour. I can't tell you how scared and worried I am about my future at the moment. I can just see a re run of pre tube life. Why must I damage my body or starve again just to prove a point.....
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About MeI'm Kate. A chronically Ill person just trying to live life the best I can. Please join me on my journey! Don't be afraid to ask me things :) Archives
May 2017
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