Everything I did yesterday and so far today seems to have taken twice as long as it would normally take, I am still so tired that my body and mind feel as though all movement are being preformed in slow drying cement, harder and harder as the day passes. I again crawled off to bed early as I couldn’t stay awake any longer I should have gone earlier but I wanted to see the end of ‘Casualty’, I know I could have recorded it but it just isn’t quite the same when watched the next day. I suppose there are a lot of things in life like that, they have to be enjoyed at the right time for them to fully satisfy your soul. Because of my inability for a second day to actually get through my normal goals list for the day, I have found myself playing a bit of catch up on my writing and twitter. I hate having to do that as it means my goals are too high for me to get through them and it is hard not to beat myself up about it. I set my goals and I set them lower than I would like and not even getting through them is a real kick in the guts. I know it isn’t my fault and I just have to accept things as they are but it still feels like a failure how ever I look at it.
The last few day though have actually finally put to rest the niggle in the back of my mind that was saying ‘you might just be able to’, that little annoying voice that wants to push me into doing things I used to. I now know 100% that my days in the outside world will never return, it is now clear in my head that I wouldn’t survive out there on my own, it was hard enough when I had assistance all the way, I will never be able to do any of that alone. Knowing something and actually putting it into action really are two very different things.
I don’t think I have mentioned this before but when I became housebound there was a wonderful plus that came with it. About 8 or 9 years ago I went through very similar problems to the ones I have now with my bowels, if I eat to much at one time I become really ill within minutes, the only way I can describe it is to say that it is like being drunk without any of the good side. I feel dizzy and sick, feelings that make me want to go to bed and curl up until it goes away, often with it I will start sweating as well and I just want to disappear. I found a solution to it on the first time round, I had to as I couldn’t work feeling like that. I slowly cut and cut my food intake, the less I ate and the more it was liquid instead of solids, the more I could control feeling ill but there was a side issue that went with that process, I lost weight. I’m not talking about a few pounds, I went down to 7st 2lbs, at 5ft 9in that is way to light, I was actually so low in my weight that I was in the danger zone and I had no choice, I had to have a gastric nasal tube inserted and my food slowly over 24hrs entered into my system. I had that tube in place for over 3yrs, with no solution being found through out the whole process. I hated it but I learned through necessity how to manage the whole system and slowly my weight improved, but there was no sign of being able to get rid of it, I tried almost every day to speed it up or to eat something but the results where always the same, I was ill. Then I became housebound. Over the first 3 months I persisted with trying to eat as always but I was getting a positive reaction and bit by bit I managed to get my food up to a level that allowed me to remove my tube and not replace it. Over the same few months I also slowly felt better than I had for years, the only thing that made sense and the Doctor’s agree, is I had removed the stress and exhaustion of getting dressed and going out, my body then had the strength to work on other things, like not being ill when fed.
I have never managed to eat normally since but I can manage a meal every couple of days and small snacks of fruit and veg have actually resulted in my now being over weight, then in December last year it all started again, with the addition of incontinence. I have maintained my weight but there has been a growing inability to eat again. When I was with the Doctor on Friday it was this that pushed me into tear, I really do not want to go through all of that again. I have no desire to return to living with a tube over my face. I have been trying hard not to get upset about it for months, to just push it to the back of my mind and ignore the possibility that the eventual result may well be a repeat of what I hoped was history. Believe me a nasal tub is no fun.
The whole experience was so painful that I hadn’t wanted to write about it, although I knew I should so that the truth is clearly laid out here, to actually put it into words for others, well I have at last done it. Add all of the above together with the sticking and choking when I do eat and I think you will understand why I am praying they will find something, something that explains the whole problem, and most of all something they can fix. Spending the rest of my life with a tube is probably the last thing I want. It may sound nuts to you but I would rather my arm stopped working again, than to loose all ability to eat. I know only time will tell and I will, just as always have to accept the outcome.