I’ve written and re-written this blog so many times today. It has been a day of mixed emotions and with each of those came a different blog. I woke up and I read the letter that has caused these emotions over and over again, which lead to me writing an angry blog. I then became tearful as I looked in the fridge for something to eat, that lead me to write a slightly depressing blog. Now, as I sit at home, feeling hungry but once again not knowing what to eat, I’m just feeling incredibly confused.
Yesterday was the day I had been waiting for… I had waited 6 years for this letter to arrive and I knew what it was going to say, but that didn’t stop me from sobbing to myself all the way home. I have yet another diabetes complication.
You see when you’re diagnosed with a complication you tend to know that there’s a problem long before any health care professionals do. You know your body well enough to feel that something isn’t quite right, even if you can’t put your finger on what that might be. For me the tell tail signs were nausea, vomiting and abdominal pains, however these were intertwined with fatigue and fluctuating blood glucose levels. Six years ago when I started to experience these symptoms I knew very little about diabetes and delayed stomach emptying, in fact I don’t think I knew about it at all. Off I went to the professionals to look for advice, only to be told I was suffering from symptoms relating to stress. Back and forth I went for the next six years when the symptoms had caused me to take time off work, but eventually I gave in, knowing that my attempts to get to the bottom of what was wrong were falling on deaf ears.
I’m not going to lie, I’m feeling quite angry about this, not only angry but also let down and saddened. As many of the people reading this will understand it’s incredibly hard to trust others to look after us and we need to build relationships that are based on trust. Knowing that the trust I gave ended with me not being diagnosed when I should have is possibly the hardest part of all of this. That trust has now been taken back. It sounds strange but after a while I even convinced myself that I was making it up. If health care professionals couldn’t diagnose the problem then maybe there was nothing wrong… surely they must be right?
So I got by for those 6 years with my symptoms, however last year I went through 4 months of near constant daily vomiting. I would wake during the night and spend hours lying awake on the sofa, running back and forth to the bathroom bringing up undigested food. I would avoid leaving the house as often as I could and struggled my way through nursing placements working 14 hour shifts, determined not to let whatever it was bring me down. My other half and my family became increasingly worried – They knew that I was vomiting and in pain but there was nothing they could do because there was nothing I could do. I looked terribly pale (even more so than usual), I had no energy or enthusiasm and I tried to hide it from them as often as I could. It’s always easy to paint on a smile.
I was admitted to hospital four times in the last two years in DKA, once vomiting for 5 days in a row. Each time I told the people looking after me about my symptoms but I was told that they didn’t need investigating, it was expensive and my nausea was settling. On my final admission when in resus, through tears and pain, I told my nurses that I had had enough and something needed to be done.
Now that something has finally been done and I have my results I should feel better, right? Well, it’s 50/50 really. For the last 3 years since I’ve been in ‘recovery’ from my rebellious diabetes years I’ve tried incredibly hard to gain control over my blood glucose levels. I often looked at other peoples HbA1c results and couldn’t understand why I wasn’t achieving my goals. I was doing everything I should be, but at the back of my mind I was always wondering… “Is my stomach emptying later that it should be? Would that explain the mystery hypos & highs that I was experiencing?” In the end I decided that it was down to me, that I was the problem and that I just wasn’t good enough at having diabetes. In a way I think I was right – I know I wouldn’t have this problem if I had taken my insulin and tested my blood glucose as I should have. If there is any blame about the cause of this complication then I accept full responsibility and I will tell myself that every day, every time I eat and with every high or low that I see. I know I shouldn’t… but I can’t help it.
It actually feels quite strange to be finally talking about this. After having symptoms for such a long time I’ve become quite used to them (on the good days) and have come up with quite a few strategies to cope with them. I always felt that unless I had been diagnosed I shouldn’t talk about it because I was playing a guessing game and there was no evidence to back me up, just that feeling that I couldn’t quite put my finger on, oh and years of nausea, vomiting and pain.
So what’s next? I’ll have a follow up with the wonderful (he really is wonderful) Gastro consultant who I saw during my initial consultation, he’ll talk to me about how I can manage it. He’s also said I need to maintain as much control over my blood glucose as possible (easier said than done, eh) so I’ll need information about managing my insulin and I think I’ll need dietary advice too. It’s a brand new diagnosis and it’s incredibly scary to know nothing at all about it – I feel very much how I did when I was diagnosed with diabetes, but hopefully I’m a little wiser now (we can only hope!). Only time will tell.