Gullain Barre

A Glorious Sunday Morning. But I am feeling somewhat less than glorious because during the night my Gullain Barre symptoms made their, always surprising, but at this point, seemingly inevitable comeback. I tried to get the journalist writing the article to include something about it, but she wouldnt, and now here it is, just when it couldnt be anymore inconvenient. Will I be able to do the photo shoot on Wednesday? I dont know...Will I be able to get my hair done on Tuesday? I dont know. WIll I be able to get the supermarket today possibly. To the storage room? And to Camden?
This is the problem with this disease. I am going blithely along with my life, making plans like any normal person, and then BHAM!!! Its like hitting a solid wall at 100 mph. And then everything slows as I attempt to hobble my way through what I need to do until the symptoms slowly abate after an indeterminate amount of time (hours days weeks). Another unsettling thing is that I never know which of my body systems will be effected. (For a description of these you can google the disease, but the list is endless, and my level of the disease is severe). It makes life very unpredicatble to say the least.
At first, for the first couple of years that is, I didnt plan anything. I didnt go to either my brother or sister's weddings, the first in terror that I would be in the Lakes and the symptoms would strike, the second because I was in a praticularly bad episode of the symptoms.
Then I finally realised, as, likely anyone with a long term debilitating illness does, that I couldnt let it stop me from living my life. I have never let it stop me from walking my dog, even when, at its worst, I could only get down the street by 6 houses then had to turn back. Nor from my daily yoga, which helps to mitigate the symptoms. I always always do both of those things no matter how rotten I feel. But as for the rest of it, I just had to release the hold button and get on with my life. Which, unfortunately, sometimes means cancelling appointments and dates, and finding myself incapable of getting to the supermarket when the fridge is empty. But in stopping letting it stop me, I have gained some freedom and quite a bit of courage; which is what led me to allow the telling of  part of my 'journey to getting pregnant' story, in a national newspaper.
As for the Gullain Barre, I have tried so many medicines and holistic and nutritional remedies, some which I think are working, only to have the inevitable return of the illness. The only one I havent tried is the Immunoglobin therapy which is the recommmended treatment. And which, as you may know, if you are someone having difficulty with getting pregnant or with miscarriages, and like me one, of those obsessive researchers on the topic, is ironically used for treating women with recurrent miscarriages.
And why havent I tried it? Because I spent all my money (down payment for a flat), and some of my parents money, trying to get diagnosed. Says quite a bit about the ineptitude of the top private medical professionals doesnt it? And once I was diagnosed, no money left. Clearly though I must find a way to sort it out. Too bad the Times isnt paying me for my story.
And through it all, I keep trying to get pregnant. Because I cant let that be put on hold either. Ironically, pregnancy is known to sometimes have a curative effect on women with immune system issues, and fabulously, when I was pregnant at the end of last year, I didnt have the symptoms from conception until the middle of last month which was months past my miscarriage. I'm not espousing pregnancy as a cure, but I think its a wonderful by-product of the situation.
Well, thats it really. I'm feeling better than I did when I started this post this morning(after the yoga, before walking the dog), but still horrible. I should nap, but the fridge is so literally empty that I there are tumbleweeds in there. And then theres the other shopping, gathering accessories, hair, photo shoot, and a big date due for this week*SIGH*
Watch this space...*:-/