If there is one thing you can count on this illness to do, it is to change. Every time you think you have it sussed and have worked out a way to carve some semblance of a life, it changes and knocks you on your ass again. Without fail, every single time I think I have got a life, I am doing some PhD work or maybe doing some flying, something happens and kicks it into touch and prevents me from doing it. At the moment I am in an awful flare up of the gastroparesis, I have lost 3 stone in weight over the last 3 months and am severely malnourished. I could handle it for the first couple of months but now my reserves have been used up and I am exhausted, weak and can barley walk around my house (and believe me its not a big house!). Right now I am not living, in fact I am barley surviving and I am just existing. I have realised that it is very difficult to keep a positive outlook when you have nothing left to give.
On the practical side I have an appointment tomorrow with a new gastroenterologist, my current gastroenterologist is in London and this needs to be managed more locally. My nutritionist, did an urgent referral for consideration of a feeding tube and this appointment is with that doctor. Actually, if I am complete honest I hope he admits me to hospital there and then, I truly believe that is where I should be right now – and that’s saying something for me! With this appointment comes a whole load of new worries of what will tube feeding look like – will they start me with a nasal tube? Or will they go straight to a tube through the abdomen. I know the tube has to go straight into the jejunum and not the stomach as my stomach doesn’t work. Each of these options brings their own concerns and none of them necessarily rational – the rational thinking would say it will give your body the nutrients you need and make you feel better. Ah but when did rational thinking ever play a part in the 4am worries! A nasal tube will be highly visible the second anyone looks at me, having spent so long hiding my illness from everyone, the thought of having something on my face that immediately paints me as ill makes me feel – naked. The tube that goes straight into the abdomen is another surgery which I don’t know that I have the physical strength to get through at the moment as it is a permanent option, which means that’s it yet another thing to get used to for the rest of my life. It also could be a combination of these and they start of with the nasal tube because it is relatively quick and easy to fit just to get me to a better place, so they can do the surgery. Of course, maybe there is a worse option and they don’t look at feeding tubes at all yet and leave me as I am. So really, I am worry about things that I have no idea about and no control over.
So, as you can see I am not in the greatest of places at the moment and I thought twice about writing a blog. I always try and be so positive about everything but maybe I need to get my head around the fact it is ok to not be ok and it is ok to open up and say – I am really struggling right now.