A Piece Of Me

Have you ever been in a situation where you are trying to tell someone something but they don’t believe you? It’s awful isn’t it. I really do know how you feel. In my case it was medical professionals, doctors and A&E staff that didn’t listen to me. I had issues starting in Nov 2017. It took until March 2018 for someone to believe me. When I was first hospitalised in the November, they told me I had a Pelvic inflammation disease, I was told there was no cure and due to the disease I would get repeated infections. I walked away thinking I knew what was wrong with me.

Between then and March I visited the Doctors and A&E multiple times. Each time I was barely looked at and sent on my way with another course of antibiotics. It was at the point where I was getting new ones every 7-10 days. Nothing seemed to be working. I was getting worse. I had stopped eating, constantly felt sick and was vomiting, I lost 3 stone, kept shaking uncontrollably and I had so much pain.

I told them all that something was wrong with me, I knew something was very seriously wrong. They wouldn’t listen, they kept telling me that perhaps I had an addiction to pain medication as I was on Tramadol at this point which didn’t shift the pain. They told me I was imagining it, that I should perhaps seek additional help to deal with my issues.

I felt like I was going crazy, I started to question myself. They are the professionals so they know what they are doing right? I saw a new doctor in March who I sat and spoke to about it all, I cried at her, told her how others had made me feel and she listened. After I was finished she examined me and took 15 minutes to read through all my notes and hospital visits and then turned me and said “I don’t think you have this womb disease” she sent me immediately to the hospital armed with a strongly worded letter. She rang a department and told them to expect me, that she wanted through tests for everything, especially things such as Lupus, Crohns and anything rare.

It was that appointment that changed everything, she saved my life. If I hadn’t have seen her I wouldn’t have had the treatments and surgeries I needed and I would have died. The consultant that saw me at the hospital when they told me what was wrong said I was days away from dying.
This post isn’t about what happened after that, I’ve already discussed that in previous posts. This post is about that time between November and March where I felt I had lost my sanity and had every single part of my self belief taken away.

It is not acceptable for people to make us feel this way. We trust these professionals with our lives, we don’t disbelieve them because they have gone through years of training and experiences to help us.

I have no problem discussing my diagnosis, surgeries, time in hospital, how I have coped with recovering, how it’s changed my life, non of it but I do have issues with the time before hospital.

I can’t talk about it without crying, without anxiety rising up with it’s nasty claws to take a piece of me back with it. I am a rational person, I would like to think I am pretty confident. I know that the same situation is unlikely to occur again but I cannot get past it.
Those few months when I was deathly sick took something from me. It wasn’t even the illness that took it, it was those people I put my faith and trust in, those people who made me feel like I was nothing, I wasn’t to be believed, those who had stamped HYPOCHONDRIAC all over my head.

I am writing this post because I need to do something pro-active to help myself, to enable my thoughts to get past this. A very good friend of mine suggested that I blog about it, not just to help myself but to also show those who have been through similar that they aren’t as alone as they feel they are, or have been. I am lucky that I have people who I love and trust dearly who allow me the space and time to cry, rant, swear and get angry.

That’s the other side of this coin, the anger. I go from being completely sad over the way I have been treated to angry. Angry that I wasn’t believed, angry that I almost lost my life and left behind children, a partner, my family, angry that I was fed all these tablets that ultimately made me more sick more ill and I am angry that my 4 yr old daughter cries whenever I have a doctor or hospital appointment because she thinks I’m not going to come home again for weeks like last time.

It should not be this way, we, as people deserve to be listened too. It is our right to be heard. We should not be silenced because we are told we aren’t qualified to know better.
As masters of our own bodies and minds we should have that control.
For those of you who have suffered a similar way, or are going through something like this, please, force them to listen to you, do not let them make you feel the way I do. You deserve better.

Thanks for reading.

Emma-Louise x

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What!? There Have Been No Posts!?

Hey Everyone,

As the title suggests, lately there have not been any posts from me. We moved house on the 1st December and the week prior to that I was decorating the new house and the week after I was very unwell and had hospital appointments.

I have found that managing my Crohns and moving quite a bit difficult, the stress of it meant as soon as we moved I was really unwell and I havent felt that bad since before my operation. I honestly thought I was heading back into a major flare, luckily though it seems it was just a mini one and I needed to rest.

I had news from my Urologist last week that while there are two options to having a permanant fix for my kidney both are such high risk to life with low success rates that I have been advised against them. I am waiting for a MAG3 scan to confirm the damage to my right kidney before moving forwrd. It might mean the damage is as severe as with my left kidney and I will have to have stents fitted in both. For the forseeable future though my left kidney will have to be re-stented every 4 months, this means more surgeries which I am not thrilled about to say the least.

At the moment I am just taking things one day at a time and seeing how I go. I have no expectations when it comes to my health as each day can vary so much.

I am currently trying to work my way through blog posts that I have missed and feel terrible for committing to them and then not been able to uphold my end. I thought that at least if I can get the reviews out there even f they are late, it’s better than nothing.

I hope you are all well and getting into the festivities that come with this time of year. I am so happy I have my tree up, it feels like Christmas is coming now.

Take Care,

Emma-Louise x