Growing up I was always tired… and in pain.
I had lots of pains in my legs. I was told that I was just lazy, and had growing pains, but now I know that was not true.
So I struggled on, thinking it was all in my head, as people kept telling me that there was nothing wrong with me.
This continued all through my teens and early adult hood. I had blood tests to try and find out why I felt so tired all the time. During this time I was frequently admitted into hospital with dangerously low potassium.
And the reason that they decided this was happening was that I was either anorexic or bulmic, which I was, and am, not. It was a very frustrating time as I eat loads. It was very frustrating to keep being told that that was what was wrong with me when I knew that it wasn’t the case.
I ended up having weekly blood tests and being put on Sando-k (which, as any who has ever taken it will knoe, is nasty). For someone who is scared of needles it was a horrible time.
But this all changed 7 years ago.
By sheer chance my blood was tested by a man who trained and worked at Addenbrookes with Professor Karet. He called me in and said to me that he thought he knew what was wrong with me.
This was a wonderful day, as I finally had someone believing me when I said that I was ill. He sent my results to Professor Karet and asked if she would see me. She did, and immediately told me that I almost definitely had Gitelman Syndrome and that, with medication, I could feel better.
So over the next few years we tried many medicine combinations and I started to get my levels on a stable level.
I still have set backs, like when I went through a stage of not taking my meds as I didn’t want to be dependant on then. I quickly realised that surviving without them wasn’t going to happen and that I needed these meds to live a relatively normal life.
I still suffer from pain and tiredness but I’m 100% better than I was when I first went to Addenbrooke, and im very proud of the change in me. So too are the team at Addenbrookes as they were very worried about me to begin with.
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