Healthy Eating: A Failed Journalist goes Lifestyle Mag!

Wednesday 9 January, 2019

Remember my financial crisis, which led to tokens for free or dirt cheap food at fast food resuatarants, which made me put on weight? Well, I was trying to lose the weight I’d gained, which is very hard when you can’t really move without pain, and energy levels are almost all low, and all energy is needed to fight off the flu and get right back into the uni saddle to write a 1000 essay… holy run on sentence batman!

I don’t normally go for the whole new years resolution thing, or diets. Health issues notwithstanding, I find a lot of people make dieting too much about goal weight orientated instead of healthy living, and they want the weight off now now now. I can’t stand when food is considered “bad” or a person considered “naughty” for eating said “bad food”.

However….

However…

All of my hard work put in after the financial crisis:- cutting down on sugar. cutting down on big fast food meals when out on social calls, trying out chair exercises just to increase movement a bit – it was all undone by 10 days worth of family christmas meals and biscuits and chocolates. I don’t know how much I weigh, because it’s not like argos sells wheelchair accessible scales, but I was almost close to fitting into my favourite pair of jeans and now I’m not, again. So I think it’s safe to say, I’m back to square one.

I don’t know what I’m doing with blogging this. I’m not about to go all Take A Break on everyone and start talking slimfast shakes, but I feel like I’ll struggle to acknowledge my effort if I don’t blog about it here.

The problem I think I have, in comparison to other people I know on a New Year’s Resolution diet, which isn’t what I’m doing exactly but is close enough it might as well be; is that they’ve got something to start from. They either plan to cut out alchohol or ready meals or sweets, but my problem is I don’t drink any alcohol, I do need to depend on ready meals a lot because otherwise I wouldn’t eat any hot food on days my parents can’t make my food for me, and although I go through phases of eating sweets, sugar is hard to cut down on when you’re literally a CFS zombie without a kick of sugar half way through the day.

But, I start as I mean to go on. I have a lunch box for when I’m out of the house, an ice pack, and a love of fresh salad. I’ll be using a calory counter as I have been using for the past few months, and I guess I’ll figure out the exercise problem along the way, somehow.

I’ll now return you to your normal AFJ wordpress blogging.

-AFJ

 


I am not normal

Thursday 3 January, 2019

A few months ago, I wrote a post, which I locked, about how worried I was about the chance of being genetically normal. A few years ago, I was put in for a genetic map study because my rare undiagnosed condition had gone undiagnosed for too long. I was worried because I’ve had a few people in my life, at key times of my life, who have doubted that there was anything wrong with me at all. I was regularly dismissed as being an attention seeker and it’s taken me years to grate off the feeling that I am not disabled enough for help, not disabled enough to be disabled, that their outright and underhanded attitude towards me imprinted on me. I might have a terrible memory now, but I can still remember most, if not all, comments said to me that have hurt over the years, and I remember who said them and when they said them.

And I was worried about the results, because if it turned out I was genetically “Normal”, that would turn my identity upside down. I couldn’t think past the possibility of various conditions I’d come across and read up about, because there was always this chance that they hadn’t found any genetic reason for why my body is the way it is.

Well. I got the results and it’s taken me a while to write this entry, like five months nearly, but I am glad to say that I am not normal. Genetically speaking, i’m abnormal. To say I was relieved was an understatement.

I have a rare bone disorder, that is so rare that currently I am the 50th person to be diagnosed with it, in the whole wide world, and is currently the most severest and the most furthest advanced that my genetecist had seen. I’ve lived with this for over 30 years, in mystery and in doubt and in pain. I had surgery to physically correct my body’s abnormalities that the genetic fault cause, at a time we didn’t even have genetic mapping.

The faulty gene was only discovered and named a year and a bit ago, and it was only in April last year that it flagged up on my sample.

I know this sounds suspcious, but I don’t want to share the name with everyone just yet. I’m just glad I have a piece of paper that confirms what I’ve been saying all this time, that my joints rest badly on each other, and that the pain I’ve been suffering from is bone pain. I have a piece of paper that says it’s a collagen fault, randomly occuring within me. I have not caused this myself, and my parents didn’t cause it, and more importantly, the doctors didn’t cause this by operating willy nilly on me when I was a child, as one unhelpful person suggested. People paint the 80s and 90s as if it was full of mad scientists eager to operate and to change and to improve without a care to the consequences, but as having lived through it, I know for a fact that whilst my doctors did some radical things to save my life, and to improve it on subsequent operations, they were never a moment too soon. I remember the pain of being left to wait too well.

If I was to have children, I would pass it on to them. You can’t have it and not carry it, but you can have it without inheriting it.

Now that they have a name for it, and as the word spreads more doctors will know what to look for, I hope it means more people looking for answers, because they live in pain and the current diagnosis of arthritis or scoliosis and or post-operative complications or they’re attention seeking or it’s all in their head, get tested and diagnosed too.

I am not normal, and that’s the best news I had in 2018.

I don’t know what 2019 will bring but i’m not sure it will top cracking a 30+ year old mystery.