Tuesday, April 2

The truth, the whole truth, & nothing but ...

The truth is, I live with fibromyalgia & chronic fatigue.

A rubbish diagnosis I know. Not to offend others with the same diagnosis, but it really is a mystery box syndrome. It is not a definite 'We can see this, so you must have this' kind of thing to be diagnosed with. It is more of a - 'Well you don't have MS, or Lupus, or Bone cancer [just a few of the things I was tested for] ... so we will gather all of your symptoms & stick then in this mystery box we call Fibromyalgia ... off you go ... have a nice day.'

I am lucky that I ditched the 'regular doctors' opinions [being mostly of the 'Ohh it is just the fibro - now go away' kind] & sought the help of a wonderful naturopath who was wise enough to test me for the MTHFR gene. As 9 out of 10 of her fibro patients have the mutation on the gene [Coincidence? I think not] which basically means that I don't have the enzyme to process folate... & folate being crucial for the production of dopamine & for the serotonin receptors of the brain to work properly, this test result has solved a lot of issues for me that the doctors just wanted to throw a stack of chemicals at because 'they might help', without actually knowing what the problem was. Anyway I now take a form of folate everyday that has already been broken down by the enzyme I am missing, & after a while my head is almost back to normal ... whatever 'normal' is. :)


Anyway I have had a hell couple of years coming to terms with what is actually going on with my body. Some days I feel ok, others are wrapped in pain ... but creating / craft & the madeit community have been my saviour. Even though I had all the best intentions of carrying on my ceramic / pottery / glass work when I designed & built my house & studio ... somewhere in the past, just before I was finished building, & as I ready to 'get back to work', this fibromyalgia 'thing' came along & put a stop to it all. So rather than resign myself to feeling horrid & watching tv, I started again using the skills I have always had to create, just a slight diversion from the heavy industrial processes that I was accustom to, & into something lighter. Textiles. Quilts. And the like.

When I was making ceramics many moons ago - it did take some years for me to find my own style ... & when I finally found it, I was ready to move & build a bigger studio. But that type of creative work did not continue thanks to my body.
Over the last few years I have had moments where I felt I was going in the right direction with textiles, only to find myself getting caught making what I thought others would want [because they purchased them] - rather than making what I love to make so much, that I am compelled to create it. Only now am I starting to find my own style with textiles. I suppose this is why I have decided to open another madeit shop soon, to be closer to where I want & need to be.

I suppose this post is just some words put together, that may help people understand me & why craft is so important to me. Why I may seem to be sporadic in listing my creations for sale on madeit. Why I don't do makets anymore eventhough I would love to. Why I don't encourage custom orders [as I do not know how my body will feel from one day to the next, & I can not guarantee a completion date.] But maybe I just needed to put it all out there. To spill the beans & stop feeling so alone with this mystery box that never truly leaves my side, & let others with this rubbish diagnosis know that they are not totally alone either ... even if it feels like it most days.


Now, if only I could write about my heart, & make it seem as simple as this post too.

x

5 comments:

Cassie said...

Thank you for sharing a personal story about who you are. If you are in front of me, I will give you a big hug x

Rachael said...

What a brave and honest post. You are an amazing person... I don't know you personally, but l too value the Madeit community and the people l have gotten to know there. I hope, if it's possible, that you beat this; sending you all the best wishes I can...

i made this for you said...

Thank you Rachael & Cassie xx

Sadly it is not something you can beat, as in 'cure' - but it is a daily battle that you can win, with love, strength, determination & good ol' Australian style 'sheer bloody mindedness' :)
xx

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i made this for you said...

Thank you for your kind words xx