An informal CV

An informal CV

My name is Claire Smith and I love to learn, and love to share it with others too. What I am looking for is for someone to invest in me, to nurture and direct my talents. If I can be taught something new, I will be up for it. If I can be involved in cool projects and have a go at working solo, I will be up for that too. I get told all the time I am approachable, and I see this when I talk to new people.

I have a wish that I can teach others so that they can share in my enthusiasm for scientific topics. I do it now to a degree; I am STEM Ambassador and will find ways of keeping technical topics fun and interesting for anyone who will listen, I explained special relativity to my Nan once, with the aid of pictures on an envelope and balled up gloves.

My body is fragile, and I only really work at a proper pace between 12pm and 4pm most days (I have a certain amount of energy to use each day and can horde it for a longer day).

Before 2006 I was working four different types of youth work and play work jobs and had a decent social life too, now that I can not do this amount of work, I now know that it is more important to create quality work.

I am still learning how to use my body, to get the most out of it; it’s like a new life that still has L-plates on it!

I love doing my Open University degree, no lectures at nine in the morning and using energy I have on work instead of getting dressed suites me fine, but there is something missing from all of this.

I don’t get to talk about the subjects with other students over coffee, I don’t get to speak to professors about their latest books, I think this means I don’t get to take part in life as it goes on.

My social life in Manchester is pretty good, besides my small group of friends, I have taken part in Greater Manchester Skeptics events, and I once delivered a small soapbox rant on the “cure alls for fibromyalgia”.  I have volunteered for Manchester Girl Geeks, and will probably do it again soon.

I want to continue with my degree, quantum physics and its branches fascinate me and I study mostly out of joy for the subject. I want to continue to volunteer but I really want some paid work, I want to contribute but worry with my lack of work experience in this current climate will mean I will have no chance of getting work, (I hate seeing my sister working in a call centre, they’re hell, I know, when she should be starting her career after graduating) that the words “reasonable adjustments” will send employers running of the other direction.

The best thing about me, if I do say so myself, is that my health is improving year after year as I get a handle on my body. This means that with long term employment, a supportive environment and plenty of understanding an employer will get an amazing, hard working, always improving Claire.

Skeptical about cure-alls

OK so here is what I have ran into and what people have sent me, sites that claim to cure all, that claim to lower you pain, free you from fatigue and financially bankrupt you, that usually are just people on a power trip, people who are misguided, people who are just plain greedy.

http://www.fibrofix.com/ is a favourite:

http://www.facebook.com/topic.php?uid=50735111668&topic=19565

Anne Hillebrand

FIBROMYALGIA'S *MEDICAL MAVERICK

*is not a medical professional but a former sales rep

It is wonderfully ironic that Anne has a buyer beware section in which she claims

Frequent use of bold lettering and all caps.

"A lot of text with many of the words in red and/or highlighted in bright yellow.

Empathetic language showing how they understand what you’re going through and how much you are suffering.

Lots of personal stories and testimonials from people whose lives have been changed by using this product.

References made to research proving their claims, but no links provided to the actual research."

Which all point to her site! (See picture)

NEXT ONE: I ran into www.foodsforfibromyalgia.com  natural solutions to stop pain & fatigue...the disclaimer says it all:

The information on this website has not been evaluated by the FDA and is not intended to treat, diagnose, cure or prevent any disease. This information is not intended as a substitute for the advice or medical care of a qualified health care professional and you should seek the advice of your health care professional before undertaking any dietary or lifestyle changes. The material provided on this website is for educational purposes only. 

So please be aware when searching for help with your fibromyalgia. The best page on help is the UK page: fibroaction & NHS Conditions Fibromyalgia

 

How roller coasters and llamaless people really can help you remain the fabulous babe or dude that you are.

How roller coasters and llamaless people really can help you remain the fabulous  babe or dude that you are.

Our lives are naturally be full of ups and down, the roller coaster a perfect analogy. Perfect in that the people who can ride have those ups and downs.

You head over to have a ride on the roller coaster, it's called "The Ride of Your Life", you are excited to see what heights it can reach and thrills it can give you. You queue for ages, only to realise you aren't "this tall to ride". There are always going to be those of us who can't ride for heart conditions, pregnancy, back problems etc. It's not just you who gets turned away you notice, so you don't feel as bad as you would if you were the only one, while you think everyone else is having fun.

So disappointed you walk away, but while the world and his wife queue for the "Ride of Your Life"

The line for the tea cups, the shooting galleries, the haunted house are all freed up, and you are "just right" to have your own thrills there. When you've had your fun, there is a little park area with ducks and a bench. You find your friends and share similar stories of the rides you've taken and the rejoice in the differences you've experienced. You are glad you are old enough to not throw a tantrum, once upon a time you'd have wailed and moaned "if I can't go on the Ride of Your Life then I'm going home!"

The next day you skip the rides and head to the park to take in nature and peace. You spot your friends and ask "what's happened, why aren't you on the Ride of Your Life?"

They reply, "Because it wasn't as fun as we thought it'd be. We'd like to take a break and spend some time with you, even have a ride on the tea cups before the fair leaves town"

So what I am trying to say babes and dudes, is that although you may feel you don't fit in a "normal" world, there will always be other opportunities open to you, and you can even make those opportunities yourself.

It's not even about compromise, some may see it as having less of a life, you should see it as having a different one, and we all have different lives to one another.

A phrase I hear too often is "at least you are better off than.... Llamaless, Lipless, Legless, Larry-no-legs with a loofer" well maybe not that phrase entirely but you catch my drift!

We shouldn't have to feel grateful because someone else is much worse off, we should be able to say, "You know, I think I may go lend a leg to Larry while lends me his loofer!"

Make your opportunities, rediscover your abilities and celebrate the difference in you life.

Claire Smith

30 things

30 Things You May Not Know

1. The illnesses I live with are:

 Fibromyalgia, Joint Hypermobility, Asthma, Depression & Anxiety

2. I was diagnosed with it in the year:

 Fibromyalgia 2008

3. But I had symptoms since:

Some since birth, some since my teens.

4. The biggest adjustment I’ve had to make is:

Having to rely on other people, & government systems that are as unreliable as myself.

5. Most people assume:

That I am too young to be disabled.

6. The hardest part about mornings are:

 Having to get up because I am in too much pain to lie there, when I am very fatigued. 

7. My favourite medical TV show is:

Helicopter Heroes count, I like the real ones!

8. A gadget I couldn’t live without is:

My laptop. Social life & Uni work would be none existent without it!

9. The hardest part about nights are:

Getting to sleep or going out cold before I can take my meds, or brush my teeth.
10. What do you take?

 17 tablets a day, 2 inhalers.

11. Regarding alternative treatments: It is called alternative for a reason, it is an alternative to rigorously tested, safe, reliable treatments...

12. If I had to choose between an invisible illness or visible I would choose: I live with both, invisible means that people treat you as though you can do anything, and visible, they treat you like you can't!

13. Regarding working and career: I have neither, but I use what skills & energy I have to help others I am working on getting a degree in physics, so I can play with particle accelerators!

14. People would be surprised to know: How much pain, physically & emotionally I am in everyday.

15. The hardest thing to accept about my new reality has been:

Realising my limitations, I am still new to a lot of this, I am still young & want to do things, a lot of them I just can't.

16. Something I never thought I could do with my illness that I did was: Have a social life: I love my sceptic meets & geek nights & improv.

17. The commercials about my illness:

In the UK there are none. But I am glad that no one is trying to sell me anything for it. I trust my doctors.

18. Something I really miss doing since I was diagnosed is:

Seeing my family & youth work.

19. It was really hard to have to give up:

regular sex, beer & my savings!

20. A new hobby I have taken up since my diagnosis is:

 I read so much more now!

21. If I could have one day of feeling normal again I would:

 I would get up early, go earn some money, go for a run or swim, rock Oli's world, have a beer & spend all night dancing! (as long as I didn't have to pay for some of it in the morning!)

22. My illness has taught me: 

To respect myself & other people.

23. Want to know a secret? One thing people say that gets under my skin is: You are too young to be disabled!

24. But I love it when people:

Come over to see me, take me out for lunch, don't need me to explain that I can't do certain things & make me laugh my socks off! (This is for my family, my best friends & kind random strangers)

25. My favourite motto, scripture, quote that gets me through tough times is: Carpe Diem! Corny but it gets me through.

26. When someone is diagnosed I’d like to tell them:

Don't be afraid to ask for help, to tell people what you need & don't need, to have a bad day. The everyday stuff shouldn't be a chore

27. Something that has surprised me about living with an illness is:

 That actions speak louder than words. (*Is cleaning/cooking for you* is better than "I am always there for you")

28. The nicest thing someone did for me when I wasn’t feeling well was:

Oli has done so many things, I always consider them the nicest, because he works the hardest.

29. I’m involved with Invisible Illness Week because:

I was visibly vocal about being disabled!

30. The fact that you read this list makes me feel:

That you may have a longer concentration span than me! I hope you enjoyed it, your prize is a sweet....knowledge that you know more about what I, & other disabled people go through daily!

I am not a Nazi, I am just a Clairepie Smeff!

I am not a Nazi! To my family and friends who believe in Gods & the supernatural: I would never want to see any harm come to you & yours, regardless of what you believe in. It's not how human beings should treat one another. I donate to charities & volunteered in the past. Remember when I have helped you out, I have done it because I  consider you as equal a human being as I do myself. That you, regardless of what you believe, deserve love, good health, respect and human rights. I am sorry that the Catholic Pope has got it wrong about atheists & humanists, I hope this doesn't cause any bad feelings between us. Please know he is wrong because he has judged us all, when he doesn't know us all. Your atheist & humanist supporting friend, relative & fellow human being Claire x

http://www.bbc.co.uk/news/uk-11332515

Paul Dirac doodle 2

Just a quick and out of focus doodle of Paul Dirac, if I find a way of drawing him better I'll send him on adventures with my fave steampunk astrogirl. Who is a secret atm! But I've got picks of her drawn up.

Just a little resolve

It would be OK if everyday was normal,
Where independence was a natural occurrence,
Where people walk alone
& shop in the market
Without a need for another clinging to their pocket.

There are things so lost of healthy people
Like the freedom of choice & time
The freeness of dancing alone in a club,
To the freedom making words to rhyme

The reality:

Wanting to go & fix some caffeine
From a real coffee shop, from a real bean
Means waiting around until you can be wheeled,
To your destination in the urban field

For example, a trip to read books,
Can be lost on the non-dexterous
Or you need someone to look
Or some to carry & hold, such a fuss.

Off to the cinema
Where life is at best, a fix f' hypoglycaemia
Means a trip on the bus, did you get your right stop?
Did you fall when it wobbled?
Did you fit, did you flop?

Having someone around to help you to the show
Mean not getting lost or a sugar overdose
Means someone to hold you when you body ticks
Means someone to hold you when the bus kicks


(The time you have to bust a move
Becomes the time you have to bust your groove,
But don't let this get your down, Claire
You can sit & dance away in your chair.)

How to resolve:

They are times when you feel alone,
In the bad way when your pain has over grown.
But there are others going through the same
And enjoying your own company will keep you sane.

Instead of walks alone, the sweet silver song
Your carer, paid or otherwise, does not belong
In your thoughts, they are all yours to sing
Aloud and inside, & think your own thing.


You don't have to say a word
If you want the peace & quiet,
Mumble your needs to them
And no fuss or maddening riot.

Dreams of flying can be real
If you only stop and feel the breeze,
If you can't make it out that day
Open the window & breathe your cares away.

Maybe stop & dictate a poem
on your speech software & think, a-low-en.
Please embrace your talents, for knitting
Embrace the things that you can do sitting.

Dream wild dreams of letting go
& write/draw/read/sing & let it flow.
This is the best way to find YOU in your ability
Someone who helps you out is lessening your disability.

So grab for independence
It's OK if you need a hand,
Solitude around people
Can be found.

*songs I was inspired by today
R. Rogers/O. Hammerstein II - You'll Never Walk Alone
Foo Fighters -Resolve

Clairepie's blog about getting disability living allowance taken off her.

We'd been trying for months to get a home care company in, after people ignoring our calls we found chrysalis homecare, who where/are AWESOME. A few days after getting my health and safety visit from them my tribunal came up, and the idiots took it off me.

It started in August 2009 when they lowered my care component because, as I didn't know at the time, the renewal form didn't have enough info on it. Instead of telling them again and again what I go through, I said nothing has changed in my condition...mistake number 1.

2.My other mistake was not complaining enough to my doctors
3. My other mistake was not realising that the tribunal would be so hard on me physically, mentally and emotionally/
4. My other mistake was having a "good" day,at the tribunal meaning pain was lessened but brain was foggened!
5. My other mistake was not getting a representative in for it. (I wanted Oli to be it, since he knew me and was a clever clogs)
6. My other mistake was assuming that the tribunal would be nice people with a sense of humour.
7. My other mistake was being myself, and not putting on my posh voice (My Scouse accent gave the game away that I was lying thieving scum. Scum, scum, scum.)

Luckily Manchester Advice are there helping us out, we have a case, there were a few errors in law, so we are hoping to see "the guy" to help us out.

So here I am with no home care, no healthy dinner, no regular exercise, no weight loss, muchos stress with a gall bladder removal coming up this month.

As disabled people and their carers are suffering more and more heartache as money is cut, as it gets harder to live independently.

I am still haunted by the story of a lady in America, who killed herself as she could not afford health care to treat her FMS.

Will that be us in the future? Taking money out means taking people out of work, out of society, which damages reach to everyone of us, disabled or not. Taking away the money means taking away the rights of disabled people & their carers.

I am here for the fight with what few spoons I have to offer.




UPDATE:

Gary the gallbladder is out & I am doing well now it is gone, almost time for me to get back to exercising! Got some awesome news today from Micheal at Manchester Advice, my appeal is being looked at in the upper tribunal & it seems like I may just get my DLA back, enough to pay for   home care to help me out *chair dance as left knee is Out Of Order!*



Bad news if this happens though (claiments face to lose benefits), I know from personal experience of HAVING too live off benefits that sometimes Incapacity Benefit, or the similar part in the ESA, that it's all someone may have, after spending time contributing their national insurance this may be taken away....I am going to ask for mine back, so I can spend it on something to cheer me up, like a hit man, or something!
http://www.fibroduck.com

They took out Gary, and surgically added Phoebe the Fibroduck

3 mental months

It's been a mad mad few weeks. It started with the 28th of Jan, me & Oli went to Manchester Skeptics in the pub, the next day we where at a friend of a friends gig and I boogied for the first time in ages around my walking stick, the next day we where at a protest (http://www.1023.org.uk/the-1023-overdose-event.php) then I went to my improv workshop, then I went home and fell asleep on the couch! The Sunday was geekery, that night I asked Oli to marry me, the silly git said yes!!!
In between study and geekery and impro and the gym I have been organising an engagement party and a wedding! A Steampunk wedding!

So it's been pretty mental recently so I am really tired. I really want a break! Luckily I have my birthday coming up woohoo! But in between all this I am still fatigued and my mobility is limited and I am still in pain, I honestly don't know how I manage it....... can someone tell me?!

Quack Quack Punch

Dear Claire,
Thank you for your e-mail. We at FMA UK always tell people that we don't recommend any treatments and point out that what might suit one person does not necessarily suit the next and anything that is expensive is to be thought about carefully. One of the problems we have is that occasionally people do find these things be they drugs, drinks, creams or therapies helpful. The best advice we can give is that there is no cure at present. I think from a legal point of view it would be very difficult to do anything about them en masse and we at present can only work on an individual basis as people ask us about these remedies.

This is in response to an email I sent about fibrofix and it extends to the recent spate of twitter requests I get from alt therapists and cure merchants. I am a little annoyed at the FMAUK for not having the balls to do what Ben Goldacre does http://www.badscience.net/ or to bring the latest research and advice to the people like http://www.fibroaction.org/ does.






The NHS look after me well, I have gotten back a lot of my life on the physical and mental support I am offered (from medication to CBT and hydrotherapy) I feel that these quacks are preying on vulnerable people (especially those in the USA) or people who's needs in the UK aren't met. FMS cannot be cured but it also cannot be helped by quick fixes.


I am still fighting it daily and have for 3 years now, with meds, diet and exercise, it's hard and sometimes I lose the battles and it seems there is no hope.
But there is, it has to come from you though, if you aren't happy with your dr's advice, let them know, if your FMS symptoms are too much, let them know. Keep at the stretches you got given by the physio last year, keep at the CBT techniques when you feel hopeless, keep asking questions and don't be afraid to ask them. That is what fighting is.

Studying, extensions and headaches

I have been studying for a while now and really loving it. It has been hard but I am almost done with my science course and have a maths short course that finishes soon too. The hardest thing about it is that I am so delicate, anything can flare my FMS.
I started on Gabapentin the end of July because it was cheaper the doctor said. I should have twigged, I am a lady with expensive tastes, no cheap jewels, no cheap foods and no cheap clothes ('cos they fit badly) and certainly no cheap meds.

Studying is still a lot harder than it has been for a while, not becuase the work is harder but because I am weaker.

It's not a word I like to use but it seems that being ill has really knocked me for six.

So I am putting the study on hold after January, I don't want to but I have to. Maybe I will pick up another small course (Maths maybe, or a residential, even some sciencey voluntary work) but I want to be swimming 3 times a week and toning my body (because I have joint hypermobility too) plus getting back to some improv http://www.comedysportz.co.uk/regularWorkshops.html (sure Bron would appreciate the plug!) Because I have limited energy I can't have an active social life AND study.

Part time life is something I am slowly coming round to, semi-retired at 22 isn't such a bad thing considering what I have acheived in the last 3 years, moving to a new city, new job (lost job!) and university level study maths and science and a long-term relationship AND a guinea pig.

Thinks (that typo is for Laura B) are looking up, then down, then back up again with a general upwards trend!
So for now, study hard until October when I have my science ECA due in, study-light until January (for my Maths course) Then my time is my own to get all fit and til September when I return to studying with renewed vigour.

(All typos brought to you by my new laptop keyboard!)

Small World

Well, facebook is making the world shrink......... I would love to hear your stories of small world meetings. My own, for some strange reason link to one friend in particular! Out for my 21st, I met Jeff in the Krazyhouse in 2005, turns out he was Walton born and bread so we knew the same people, but did not know each other! Now a friend of his also knows my cousin..... massive coincidences and a very small world.... do you have better stories?

Bisexual Atheist, I am so going to hell!

Wow, so I am going to hell!

If there are two things that get bad press it's atheism and bisexuality.

I am going to compile a nice little list of media misrepresentations of atheism and bisexuality.

Just to my lil readers know, I am not a baby eating succubus!


Ok so here we go, basic instinct...murderous, promiscuous bisexual.
Kate Veatch in dodgeball - slag, sorry having her cake and eating it bisexual (though I love the film!)

ok that's just so far.....will edit laters! Please give my any more people you think should be included

I found this link and was over joyed,so scroll down to the categories and find one you like http://tvtropes.org/pmwiki/pmwiki.php/Main.DepravedBisexual This website is addictive. and http://tvtropes.org/pmwiki/pmwiki.php/Main.HollywoodAtheist

My sis says she does not understand bisexuals at all.... all I can say is.... it's all about the love. She has her type of woman, I have my type, other people have their type, they may not all be the same type, Blondes, fem, butch, post-op, gingers, Japanese, geek, pop-tart, metal-head, air-head whatever! Love is love and as long as people are loving and not hating, it's all that should matter.

As for Atheism, I have asked Oli, that if I ever start believing he should have me committed, no conversion or seeing the light for me thanks.

This is hysterical

*wees*

What's the point in raising awareness!?

I have tried really hard this year to raise awareness, I have 126 "friends" on facebook, a handful on twitter. I asked who cared about FMS, emotionally blackmailing people into noticing upset me. Only 14 people anwsered to the question and the quiz, none of them family. So where am I going wrong? Is it because I am an average jo? Is it because I go on about it all the time? Is it because no one cares about sick people, or understands? Is it because it's not relavent to them?
People prefer commenting on things they can identify with, and being ill or having FMS may not be one of those things. A "friend" asked me what FMS was......... how can a person who knows me, not know about fms? It upset me because I spend time asking "How are you?" How are your family?" To realise what's the point in having selfish people around who want you to reply to their commentry but will not care about replying to yours.


*sad Claire who needs a cookie*

FMS Quiz 11-05-09

Fibromyalgia quiz

1. What does the word fibromyalgia mean (fibro-my-algia)?

2. How many fibromyalgia tender points are there?

3. Name 5 (or as many as you can) symptoms of fibromyalgia (there are more than 5)

4. Name 3 (or as many as you can) pre-existing conditions that can lead to fibromyalgia

5. How many people may be affected with fibromyalgia in the UK?

6. What sex is more likely to have fibromyalgia (extra point for getting the ratios)

7. Name 5 (or as many as you can) physiological/anatomical differences between healthy people and people with fibromyalgia

8. When is the UK fibromyalgia awareness week?

9. Name 3 medications and 3 treatments that are used to help people with fibromyalgia.

10. What can you do to support people with fibromyalgia? (The best ideas get a prize)



Did you get to the end? Unsure of anything? Then you can CHEAT! I don't mind, go look it up seriously ;)

Bitten by the blog bug....here's another.

I love my Dr's! A lot of people rant about how their doctors are pants.....I have been looking after myself pretty well with advice from the intertubes and also pop along to the Dr's. Their advice is SPOT ON everytime, they give me good advice and they refer me where needed (I have been refered for 2 lots of CBT, and now going to see ALFA http://www.manchester.nhs.uk/health/healthy_lifestyles/alfa.html) All of the Dr's there have been super stars....If you live near me ask if they are still taking on (which is think they are)

This is there address and phone is here http://www.manchester.nhs.uk/local/map.aspx?area=19&services=2&service=88

Parcel Force Forced Parcel Pain! Contains A Swear!

Damn it, I sent a letter of complaint about this rude guy who saw I could barely stand up (bad knees day) then proceeded to hand me a parcel in my left hand (weak) which I dropped and swore (motherfucker!) Here's the letter anyway.


Hello, I have just had a package delivered (10.30am) and the delivery man was extremely thoughtless. He buzzed the flat repeatedly when I could not get there quick enough to answer him, I signed for it having to lean against the wall to do so as I use a walking stick in my right hand and also write with that hand. Then, after he watched me struggle because I could not support myself without my stick, he handed me the package (of 4+ books) in my left hand and promptly turned and left. I had to drop the package as it was too heavy for me to hold in the one hand, I swore, quite loudly as it really hurt me. He could have placed it on the floor for me seeing that I was struggling. This man was very impolite and thoughtless and caused me pain. All I'd like this time is an apology from yourselves and the delivery man and something to cheer my flat up now that I can't leave it today while my left wrist and arm recover and shoulder recover. (I’d gladly talk specifics about my disability if you need to.)

Typing one handed,
Claire Smith

This guy has really pissed me off with his ignorance and uncaring attitude. Disabled-Hater or ignorant git? Either way, that's no excuse for not being a decent human being.

These things I assume:

These conditions are not my fault.

These conditions don't get in MY way. (Proved by acheivements, my motivation and the love I give to other people.)

I may have days where I am limited to do one thing but the sky's the limit for everything else.




UPDATE: I have had a reply and an apology from the customer service people, they are going to contact the local depot (which is up the road from me) and see what they say.

I drewed this!

I did this after being inspired by playing some Star Wars RP last night! I may do another one with Stormtroopers, don't steal my idea!

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