Monday, 23 March 2009

100th post and an end in sight!

Sorry I haven't been about lately, I haven't been too good actually. It's something I don't talk about much but I suffer from Fibromyalgia. I have done for a very long time and it took years to get a diagnosis. My sister was diagnosed with M.E. a very long time ago and was really very poorly for a while. After going to the doctor with a whole variety of weird symptons and discussing them with my sister, i realised there were similarities. My sister showed me some information on Fibro and I realised that was it!! My doctor had been pretty useless uo until I presented him with the information, and I got my diagnosis about five years ago.

Since then my sister has discovered that she actually has multiple chemical sensitivity not M.E. M.E. is such a vague term. When the chemicals she is exposed to are controlled my siser now lives a fairly normal life. We think both our problems were casued by exposure to Organo Phosphates and that's why we both suffer. My chemical sensitivity is not as marked as my sister's but I still have to avoid certain things.

I have coped with my Fibro relatively well over the years and have been determind to leave a relatively normal life and not let it get to me, I think that's why I don't really talk about it. Most of the people I know don't even know I have it!! Recently I have been quite poorly and my health is deteriorating. I am loosing weight, and completely unable to put it back on. My fatigue levels are high, my skin poor and my pain levels have increased. My digestive system is also a complete mess. So last week I was off to my new doctor for a moan. It looks like I may have Celiacs Disease. A very daunting prospect!! I didn't know much about Celiacs, I thought it was an allergy. Turns out it's an auoto-immune problem where the body's immune system sees Gluten as a bad thing and attacks it,, causing damage to the intestines. The damage caused stops the proper absorbtion of nutrients etc from your food.

The only cure is to completely stop the intake of Gluten for the rest of my life. The prospect is extremely scary but if it means I can get well, have more energy for my children and generally live a much healthier life then it actually makes the diagnosis an exciting possibility!! I hope that makes sense!! Any no doubt I will have more to say about this new journey so I will let you know how it progresses. I will also try to update you on all the 'normal' things that have been happening! But for now I'm am hoping you are all feeling better than me!


Liz said...

Poor you! My friend has fibromyalgia and has suffered since a teenager but it was only comparatively recently - about 5 years ago - diagnosed.

A gluten-free diet sounds very hard but, as you say, if it makes you fit again. Hope all goes well for you. x

Berthddu Suit said...

Thanks Liz, I have to admit I'm feeling rather sorry for myself at the moment which isn't really like me at all!! I just wish the NH would hurry up so I can make a start on getting better!

Carolina said...

Gosh, that's not good! I don't know how it is in your supermarkets, but at least in shops here I see that there is lots of glutenfree food available. But still, it makes life difficult. I don't know much about fibromyalgia (I'm glad to say ;-)). I hope you will feel much better soon. Good luck with the glutenfree stuff anyway.


Janie said...

I'm so sorry you've been feeling ill.
Hope the gluten free diet isn't too much of a struggle and helps you to feel better.

Stiggy said...

Sorry to hear you're not feeling well - I wish you the best on your condition - is that gluten thing a definate? Or is it a possibility?

I'm going to a specialist about an ear problem - it'll be good to know exactly what the problem is - then we can address it.

I think once you know for sure it may not make your life easier, but it will be better for your head.

Best wishes,


Carolina said...

Hi, maybe I can cheer you up. Our foal was born yesterday evening. It's a girl. And we have chosen a name YOU suggested in my E-post (if you remember, I promised you a ride if she's old enough ;-)).
We chose Eavanaloma. So.....I will send you an e-mail to make it easier and then you can send me an e-mail with your address. We will send you a thank-you-present. Just a small one, but still.....

Hugs for you and thank you for your lovely name.

Don said...

I'm sorry you are going through so much. I hope you and your doctors can get to the bottom to these issues. I have a student who has gluten allergies and she is getting things under control. I wish you the best, and hope you keep us up to date.