Thursday 19 May 2016

The Trip, final part! On neuroscience and just not knowing.

By now I have covered most of the gist of the meeting. I have left out the emotional back stories (they are for their owners to tell and honestly a lot of them are much more full on than mine!) and I haven't covered the more remote aspects, the 'what-ifs', such as the need for more counseling available to mothers with young children diagnosed, or what we would actually want to have available in the way of drugs, if the possibility arose. The interesting thing was that none of us would have it taken away. Cured. Rid of. We were all interested in symptom alleviation, of course, even when we stick religiously to our diets symptoms still creep in. I, however, was not the only one to say that if I didn't have this lurking in my system I would be the size of a house. I am grateful to my LPLD. Stockholm syndrome? Maybe, but there are worse ways with dealing with a lifelong dietary prison guard. I was asked by the company hosting the meeting to write a letter to my LPLD and I couldn't do it. I have never given it enough fuel to become a character in my life. It is part of me, like my uneven front tooth or my fat knees. I can't write to my knees. I have been asked again to write this letter, though, and I think I have found a way round it.


I would like you all to meet Eddie and Freddie. They're shy, so they have asked for no pictures, but I will talk them round. Eddie is one of my favourite people. He is a fat molecule. He loves me. He calls to me across rooms and from supermarket shelves, from under hot lamps in cafe counters and from restaurant menus. He doesn't mind rejection, he's like a dog. He keeps coming back. And he's a friendly little thing; you will find him in all sorts of guises in the vast majority of food. Sometimes he's roughing it in his leather jacket in a hamburger, sometimes he has his best suit on and is using his pseudonyms, Omega 3, Essential Fatty Acid, or just simply Good Fat, sipping champagne and looking like someone Daddy would approve of in a mackerel or a bottle of Extra Virgin olive oil.

And, boy, do I love Eddie. I love Eddie in ice cream, smooth and suave. I love Eddie in garlic butter, spicy and strong, ruining me for other people until I can clean my teeth. The problem, however, that I have with Eddie, is Freddie.

Freddie is a poor old thing. He is not quite right. He is an enzyme. It's not his fault, poor guy, it's Gene's. Gene is the one with the instructions on how to make a Freddie and they are, hoo boy, wrong. Wrong. Freddie's job is to convert Eddie into little mini Eddies that can travel around my body and do all the marvelous things that Eddie can do. Freddie is just so bad at his job that Eddie rarely, if ever, gets what he needs. So he rides around in my blood, turning it thick and goopy, settling around my organs and lining them like the cars of caring parents lining the school at 3.30pm on a rainy day. Nothing can get in or out and if something does it is likely to get run over by a passing red blood cell grimly squeezing through blind in its attempt to deliver oxygen to starving cells. He overloads my pancreas, causing it unknown stress that will probably lead to a breakdown in not too many years. He can even squeeze himself up to my skin and sit in little blisters of fat, sunbathing whilst he waits for a let up in the traffic that means he can get out, out, out. An evacuation bus will eventually come and on he will pile, Eddie after Eddie, ready for exit. He doesn't like the ride, and when he finally escapes he is noisesome and smelly and in need of a bath. Freddie is eternally apologetic for all of this and tries his best, the love, he just is not up to the task.

Freddie and Eddie get revenge on Gene! (Sorry, I just could not resist.)

So it is Freddie, in his distress, and Eddie in his exuberant rollercoaster ride through his life and mine, that I would be writing to. And I feel sorry for Fred. If he worked as he should, then sure, I would have a less destructive relationship with Eddie, but really, Eddie is not the sort of chap one invites to one's cousin's christening. Fred is doing me a favour. Of course there are complications, the tiredness, the brain fog, the skin problems, and the deficiency in fat soluble vitamins. The social issues. But I have all my limbs and all my friends and what do I have to complain about?

Since I have been on this diet proper I have learned about cells. Brain cells (grey matter) are largely composed of fat. The synapses that transmit the chemical impulses that power our thoughts and emotions are sheathed in fatty acids. A low fat diet such as mine impairs brain function. I am intelligent, don't get me wrong, but on a day to day basis I struggle with forgetfulness. I cannot remember stuff. Important stuff as much as simple stuff. I'm sure that I've spoken about this before, but the impact that it has had on my life through the long years is profound. I couldn't remember to take my birth control. I can't remember to make sure the kids have a shower often enough. I can't do prolonged discipline on the kids such as grounding for a week because I will forget they are grounded. If someone calls to ask me to pick them up at a specified time I have to make sure that I don't let them off the phone until I have written it down because by the time we have finished the call I will have forgotten. Thank goodness for this meeting, because all my life I have felt guilty about forgetting the important things. I have felt like a failure. Now I understand why. This doesn't change anything, of course, except the way that I see myself and my attitude towards the problem. Nothing much!


Now I am not a doctor, but as I understand it the very membrane that makes up our cells is largely compiled of fat. (I use the word fat to mean everything under the umbrella, fatty acids, lipids etc). I will be the first to admit that my cells seem fine. I do not appear to be falling apart, and I only mention this in relation to skin cells. Since I have been on this diet (and another quick recap - I have only been seriously on this diet for the first time in years for the last few months) I have noticed a problem with my skin. It was explained to me in terms of the fatty element of the cell membrane maybe giving me problems retaining moisture in my skin. This could be entirely possible, but the newest research seems to point to the fatty elements that make up the outer layer of the skin actually having a 'first responder' role in dealing with infections. They keep those bad germs and pathogens at bay whilst they wait for the white blood cells to arrive. Skin deficient in these epidermal lipids is prone to, in particular, atopic eczema. Which I have had in spades these last few months. I have finally found a cream that claims to replenish the lipid layer. The ingredient it uses is triglycerides. I am of two minds, my whole aim in life is to keep triglycerides down, surely lathering them onto every inch of my body is not going to be helpful in this respect, but since using it, in a matter of days, my redness and itchiness has virtually disappeared. So, I shall just have to keep an eye on the triglyceride count in my blood!

Well, that's that then. I flew home, totally knackered but with a new intent. What Eddie and Freddie need is a marketing campaign. Most of the really horrible symptoms, some of which I have not even mentioned, occur through mismanagement or misdiagnosis. When we go to a doctor, we usually have to explain our problem to them. Hence this blog. We universally agreed that having this disease is 1000% times better than not knowing we have it. Not knowing the symptoms. So share the hell out of this post and all my others. If it finds one person that recognises themselves in my writing or on the LPLD Alliance website, NORD website, RDUK website or the RareConnect forums then it is worth it.



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