Hello once more. I don't like feeling rushed about writing and therefore I have not posted recently. If we're going to be honest, I have not done much of anything but rush around in a tizzy not achieving things lately. I can never even get to the computer lately and when I do a thousand things (and I really feel I am not over stating that one) seem to need my attention. I have not even been able to keep my food log going and, well, we won't talk about what kind of meals have been served up these last few weeks!
It has been over a month now since my visit to England to meet my new friends in suffering and it seems like such old news now! I think that I have captured the general feeling of the trip so far in my previous posts, so I shall dive right in. Firstly, you need to know that I can't go into detail (hooray! I hear you say...) as I have to respect the privacy of the amazing people that I met. What I can tell you is that I learned a LOT about my condition and my future. This has had a big impact on how I am living my life now.
It was with some trepidation that I made my way down to the dining room that we had to ourselves. I now had on a beautiful dress borrowed from a friend as I was very unsure as to the poshness level needed here. My favourite high heels and a soft shawl round my shoulders and I reckoned that I looked the part. It was certainly an improvement on what I had arrived in, which was now sulking in a corner of the bathroom where it had been thrown in my hurry to get into clean water. As I stepped into the corridor I could see someone just calling the lift. They spied me and made motions to indicate that they would hold it for me. I scampered down the hall, employing that half run, half tiptoe kind of gait used when one is dressed nicely, in a nice establishment, and is trying to run whilst looking like one is daintily meandering, wafting scent and appreciating art. In short, I looked like a wally. I arrived at the lift, pleasantries were exchanged, and the nice lady said to me: Are you Katie?
How did she know? Was I inadvertently wearing my church warden name badge? 'Yes,' I ventured back, and stabbed in the dark. 'You must be Jill!'
She was, indeed, Jill, who had organised us all together for the trip. This was our first time speaking and apparently I am just like people imagine me when they read my posts. Well, I guess you can just call me Ronseal, because I do exactly what it says on the tin. My favourite part of the whole adventure, I think, was at the end of the meeting, when the executive from the pharmaceutical company hosting the event shook my hand and said 'Thank you so much for coming, Katie, your energy has made this fun!' Which is a great compliment, really, when you consider that a fair amount of the conversation of the day was on the subjects of diarrhoea, vomiting and childbirth, along with not a few tears!
My main aim in coming to this meeting had been to get everyone's tips and cheats for getting enough energy to get through the day. I had expectations of wonder foods that I had missed, or some sort of supplement that would help. I was disappointed. Although everyone presents a little differently, there are a number of symptoms familiar to a lot of us, and tiredness is a biggie. It seems that if we 'cheat' and eat over our fat levels (which are different for different people. Mine is actually one of the highest at 20g per day), if we are able to do so without hospitalisation, although we get enough energy in, as most of it is gained through fat (fat gives 30kJ energy per gram, compared to protein and carbohydrates 17kJ and fibre's paltry 8kJ), we still can't access it. Even if we get enough through the other nutrients, there is such a buildup of fat, like a bottleneck at a busy junction onto the motorway, that our body shuts down extra processes to concentrate on clearing the traffic. Fat molecules need to be broken down into smaller fat molecules to be used by the body, and our bodies don't do this properly. It's a bit like none of the cars on the motorway letting the guys on the slip road in, and everyone just sits there until an opportunity arises. One of the doctors present explained this tiredness to us by saying that it's like the feeling you get after a big Sunday roast, and all you want to do is sit down and sleep it off. Well, that. But ALL the time.
If we are good and keep our levels low, then we simply do not get enough energy in. Protein is usually associated with fat. With the exception of beans and pulses, it is found mostly in animal products. Even low fat animal products are generally higher fat than we can deal with, except white fish. Carbohydrates are found in fruits and veg, although in veg, in quantities too small to be of use. And of course, most of the fruits carbs are sugar. When I first started logging the diet earlier this year, I was having tea with sugar, cereal with sugar, fruit drinks... and keeping the energy to maybe 3/4 recommended daily levels (not including deducting for exercise). At this meeting, I learned that diabetes is a common symptom of LPLD. Diabetes, or rather the methods employed to process sugar are closely related to those for processing fat and cholesterol. The pancreas is the key player. In our case, our pancreas is constantly under stress trying to keep up with the fat processing. This makes it vulnerable to breakdown, resulting in diabetes. In my particular case, it is no small miracle that I haven't already contracted it, as I have lived a sugarful life for over thirty years. Much sobered by the prospect of not being able to eat fat or sugar, when I returned home I had to make the difficult decision to cut out as much sugar as possible in the hope that I can stave off the seemingly inevitable for as long as possible. I am in no way eating as a diabetic yet, but I have adjusted a lot of what I eat to try to achieve more realistic sugar levels. This is a problem as a) I am not good at it. And I live in a country not set up for it. and b) I now only achieve energy levels of maybe 1/2 to 2/3 the RDA.
And all the others are in the same boat, and there's nothing to be done about it. One lady explained it well by telling us that she would happily make up schedules and set tasks for the day or week and then when she woke up that morning, she would just know that it wasn't going to happen. It's not even the will to do it that's missing, you just know that you physically can't. I have days like this when I have to. Sometimes, you just can't say you just can't. This leads to 'brain fog', which I will cover in another post. On the plus side, it's now official. I can stop and sleep when I need to without feeling guilty. I also do stop and sleep, whereas before I would maybe sit down in front of the TV for an hour or so. This, of course, never helped, as I don't need relaxing, chilling, time out, I need sleep. So now I have made the bedroom a pleasant room to spend daytime hours in, not just a place to go at the end of the day. And I go and sleep when I need it.
So, that got all serious pretty quickly. Back to silly walks please. I am off to pay attention to my overflowing inbox and maybe listen to a few more songs. We are planning a wedding blessing (I might have mentioned this ;) ), and we just can't settle on a soundtrack. Next time, cognitive impairment and cod carapaccio. Stay tuned.
No comments:
Post a Comment