Wednesday, September 8, 2010

My Fibro Family: Selene

This is a very special Fibro Family post. It's Invisible Illness week in the UK, and I was contacted by Miss Selene to help spread awareness. She's just started up a new blog, so go check it out! I will be answering these questions for her blog as well, so if you wanted to know a little more about me have a look!

Stay tuned for our regularly scheduled Fibro Family Post tomorrow.

What's your age?
I turned 25 this year in a hospital bed :D

What's your gender?

Where are you from?
I am from Kingston in the Greater London area, UK

Do you have a blog?
I have recently started one:

When were you diagnosed?
I was diagnosed last December (2009)

How have your family and friends reacted?
My boyfriend (future husband!!!) was angry with the diagnosis at first as both his mother and aunt have fibromyalgia. I think he was worried that I might just give up and not really bother with my life anymore, but with him constantly encoraging me and reassuring me through the sad times I am now a fighter :D. My parents were really worried at first, and my mum kept asking if it was anything she did whilst I was growing up that caused the condition :D The rest of the family always
try to help me with bits of advice and by asking if they can do anything to help. It's difficult to keep saying that no one can really help me but myself. I'm the baby of the UK family (I'm half Italian): I'm an only child to my parents and an only grandchild to my grandparents dispite the fact that I have two aunts. So I suppose
everyone worries about and fusses over me more than your average family! My work collegues didn't really comment, and those who did gave me the whole "it's all in your head" thing. I'm not sure that my friends really understand the condition, but they know that I'm always tired and in pain so it's difficult for me to go out and do stuff with them. They accept this and do not push me if I cannot do something, and I think that is the perfect way to be!

What are some of your coping tips?
I think starting my blog is helping me cope a lot. It stemmed out of the fact that my dr asked me to write some notes on how fibromyalgia effects my day to day and work life. As soon as I started writing all of my worries seemed to be slightly lighter, like I didn't have to pay attention to them anymore because they were written down and someone else was reading and taking care of it. So comes my second tip: a massively easy thing that is helping me no end is a wireless keyboard. Sounds silly, but it would be literally impossible for me to sit at a desktop pc for more than about 5-10 minutes without pain. Just writing these answers would have taken days, but now I can lay back in my zero gravity chair and type pain free! Also, learn to sleep: I recently discovered that forcing myself to get up when in huge amounts of pain only made it worse, but sleeping in every now and again really helps pain levels to go down (even though guilt levels increase dramatically!).

What is the one thing you regret having to give up from fibro?
I was never much of an outdoor person, never really enjoyed evenings out, I always preferred to stay in with a good book. But with the fibrofog I'm struggling to get into books and actually finish them. I used to pick up a book with no problems, now I'm always forgetting what happened, who this or that characher is, etc. So every time I think about picking up a book (be it pleasure or study) I'm reluctant and something pulls me back. Thats what I hate the most.

What is something good you've gained from fibro?
I've definitely gained a new positive attitude and way of thinking. I think I've also learnt to stick up for myself and be more outspoken (slightly, still working on that one!). Also I have learnt to have the amount of respect that I should have always had towards the elderly and disabled: no matter how much you think you understand them you just never really understand until you're in that situation. I always joke that I'm an old lady in disguise, and now I'm a lot more prepared for real old age!

What changes have you made to make your day to day easier?
I have recently had the opportunity to change quite a lot as I am signed off work at the moment, so here's a few:
1) modified my diet quite drastically (with great results!);
2) started taking vitamin c, b complex and zinc supplements. Also started using a magnesium spray daily;
3) bought a counter top dishwasher for our tiny kitchen (I don't know why but doing the washing up is one of the things that makes my shoulder pain sooo bad, so for mine and my boyfriend sake we got one. Now having a clean kitchen doesn't involve a day's labour and 2 days pain :D);
4) my amazing boyfriend insisted on buying a zero gravity chair for the living room! It is literally the only thing that I can sit in that does not cause me pain, would highly recommend people to try one! They are extremely expensive but worth every penny!

What advice do you have for the newly diagnosed?
Don't be sad, be happy you finally know that you're not insane and fibro will not kill you! And don't look at all of the things you think you will have to give up or won't be able to cope with, take it one day at a time and deal with problems when they arise: worry only makes your situation worse. Experiment and find your own personal way of coping, also learn to be much more egocentric to listen to your mind and body more. Learn to say no!

Anything else you want to add?
I am frustratingly close to being able to go on a pain management course in a pain clinic! It is 9am to 5pm, Mon-Fri for 3 weeks: tough, but | think it will be worth it! If I learn any new ways of managing and coping I will def let everyone know!

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