Email to friend on wearefibro.org

Sorry for the long email, I am also going to blog this, I need to get it off my chest (and wont be using guiaifenesin for it!)

I was reading fibrofix.com and some of the comments Anne has left on this website that are very misleading and have no basis of scientific fact, there are no obvious journal links or studies etc, and there are adverts on there too (whether she receives payment for those adverts I don't know, or care.)


It saddens me, the state of this world when people suffer and there is always someone trying to make money from it. People with FMS are often let down by the health services and people become so desperate they will try anything, and it's this preying on vunerable people (like theGuaifenesin that has been proven to be no better than a placebo when it comes to treating FMS) that really makes me angry, I want to stand up for people but feel a bit useless and lost with it all.


If you can get hold of a copy of Ben Goldacre's Bad Science, or visit his website www.badscience.com (I think) The book helpfully explains how fair tests are done. It opened my eyes. Being a newbie scientist I feel it's my job to make sure that truthful answers are given and how science (and pseudoscience) relates to people with FMS. I'm honing my skills to kick the asses of people who make false claims and raise the consciousnesseseses(!) of people who believe these claims because they don't have all the information.

http://www.fmnetnews.com/resources-alert-product6.php

HAPPY HOLIDAYS

Have a great christmas and a great New Year, here are some fun pictures of festiveness for you.

Atheism and Disability

I was 13 when I decided that there was enough evidence for me to not believe in gods and the supernatural. Emotionally it's saved my life, with no one to blame for my bad luck, genetics and life choices (that's my taste in music, not my taste in woman, that goes under genetics!) means that I get to enjoy my life and accept me for the awesome chica that I am! It means that when faced with the long term illnesses I have I can acknowledge them and then fight it all the way. It means that my sexuality is not a thing that I should hate myself for. So loving myself and improving on my life is what I am all about. With a religion and gods in my life I'd hate myself (and did when I believed in the christian god) and would have to accept my life, as that would be his plan.


There would be no way I could accept some sort of Divine plan that I am disabled for my own good! It sucks, how could a god give me all the good things in my life then give me all the shit things that go along with it? And logically the possibility of gods is highly improbable (as you know you can't prove a negative, just as you can't prove the invisible pink unicorn doesn't exist [as symbolised above]!)

I am happy, atheist and chronically Claire.

Pennies, pain and pans!

My Kitchen


















My friend Nath is having a Fibro Flare today and needs a hand with the dishes. I wish I could help him, I would but he lives in Scotland so by the time I'd get there I'd be spoonless!

I am focusing on saving my spoons and having very little help at home is not only taking up my spoons but Oli's too. We are both running on a spoon deficit. When I clean up, I get over whelmed with fatigue afterwards, I pull muscles and the pain is very overwhelming. I may look OK, gorgeous and in a good mood, but I'm always in pain.
We get no help at all, we can't afford to hire a cleaner. We don't get any help from family or friends, and by the time we have cleaned up, Oli has no spoons left to help me manage my pain, and I have no spoons to make him a cuppa. Sex is out of the question when the house is a mess!

I felt really embarrassed recently when Rehan came to stay and the place was a mess, he helped me with the dishes, we both had a sponge each!

Most people see us on the outside, Oli has friends round once a week for gaming etc, I rarely have friends or family round, and none of our friends (minus Rehan *wink*) would be willing to help. Whether they see our situation and think us lazy, or think that once they start lending a hand they'll never stop, or that we could never repay the favour I just don't know.

I don't know if Oli can see it, but he needs help too. He can't be expected to clean everything up.

What I am basically saying is that if I get help it saves me spoons, so I can save spoons for you! People can get the best out of me, and I can get the best out of life.

So what can we do? Could you give us a hand? Or is our situation too much of a burden?

Completed Physio feel really good for it, it's the kick in the bum I needed. I feel better and better each day with enough motivation to step up my routine. Still trying to get to a warm water session but my pain has subsided just enough that I can concentrate on my daily routines.

The pictures are of the pool where I did my physio sessions, the people there were really nice and friendly and very helpful, I really would love to go back (though the 8.30 am ambulance was a bit much!) I should ring today!

Physio

I have one session left, it has been really good in making me feel more motivated to get my health back up. I am starting a warm water session on a Saturday in Chorlton, should sort me right out. The worst thing about the physio appointment is the travel there and back, the first few tiems I took a cab there and bus back. I felt like i could have died doing that, so I had the ambulance pick me up. My appointment is at 10.50, the first time they picked me up I was on time for that appt, I've been early since, being picked up from 8.30am onwards. They have to pick up other people. I am not a morning person and having to spend an AGONISING hour in the bumpy ambulance isn't ideal. Infact it pisses me right off! But one more session to go....... I'll take some pictures of me doing stuff if I am allowed.

C x

Hi It's been hard having to adjust to life with Fibro, the worst thing is the feeling of frustration when the fibro limits your life.

There's nearly always a definite beginning for fms, people have had colds to near fatal accidents.
I have previously posted my story but I am goin g to touch on depression and how I am turning my promblems around (I still have them, I am providing no miracle cure!)
When I first did my back in I was suffering with depression, you'd have to be a Vulcan not to feel low if you went through the same. I started on this course: http://www.beatingtheblues.co.uk/btbOnline/introVideo.jsp was referred by my GP and since being diagnosed I started again when I got to Manchester. The first time was great, it helped me out of my depression and helped mine and Oli's relationship. The second time is a lot harder. A lot of the activities aren't relevent to what fms sufferers go through, making an activity sheet was EASY! Sticking to it, even harder, not because I am lazy but because it's not up to myself when I can do activities like seeing friends but when the Fibro says so. I can't make all my appointments so what I learn just goes out the window.

At the moment it feels like the Fibro has me I don't have IT!
This leads to me feeling low, at times suicidal and most of the time pretty useless. There are lots of things that I can do, I beleive it, it's not an empty statement. I can't help feel that I believe both, displacing one with the other isn't going to work as I have evidence for the both of them. Renaming it: "just a flare" or saying "it'll pass" is just denying what it really is a DISABILITY.
Although a flare temporary thing, Fibromyalgia isn't, it's hard work and in cognative behaviour therpay talk it's: Permanent, Internal and General.
It's permanent because there is no cure. It's internal because it's my body effecting my emotions, and general because it effects my life everyday in everyway.




I hate to compromise with Fibro, I fight it, trying to be normal. But how can you with limited spoons?



They call it a disability for a reason.

Compromising your life with an illness is what a lot of ppl deal with everyday.
There are a lot of reasons why I love being disabled:

1. I am totally sexeh! I have put on a bit of weight and some of it has gone to my BOOBIES, I am happier with myself now my curves are guilt free!
2. I try to make the most of my time, doing something educational or creative.
3. I value my health, I don't drink heavily and I know how to listen to my body
4.I value my relationships, my friends and family know that their fibropie tires easily and all our time is QUALITY. Me and Oli plan ahead but there's no pressure if things dont go our way.
5. Strangers are a lot nicer to me! Letting me cross the road, talking to me, giving up seats. whichleads nicely onto...
6. I have more confidence, I can talk to anyone and I am approachable now with my lil Letty (my stick, she lettys me go places I couldnt without her.

So my points are: I AM DISABLED but am FREAKIN' AWESOME!