Chronically Claire

An informal CV

2012-02-06T16:35:00.002Z

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

2011-02-28T16:26:00.002Z

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.

2010-10-11T15:50:00.000+01:00

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

2010-09-23T13:36:00.000+01:00

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!

2010-09-16T19:57:00.003+01:00

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

2010-09-10T12:10:00.001+01:00

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

2010-08-05T21:37:00.004+01:00

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.

2010-07-05T14:01:00.001+01:00

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

2010-03-25T10:30:00.000Z

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

2009-12-01T11:02:00.000Z

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

2009-09-21T14:50:00.000+01:00

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

2009-08-10T16:27:00.001+01:00

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!

2009-07-16T12:55:00.000+01:00

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

2009-05-17T10:52:00.001+01:00

*wees*

What's the point in raising awareness!?

2009-05-15T12:59:00.001+01:00

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

2009-05-11T17:53:00.000+01:00

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.

2009-04-30T13:51:00.000+01:00

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!

2009-04-30T13:06:00.000+01:00

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!

2009-04-02T12:00:00.001+01:00

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

2009-03-17T11:27:00.000Z

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

2008-12-23T09:44:00.000Z

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

Atheism and Disability

2008-11-15T17:25:00.001Z

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!

2008-11-12T12:49:00.000Z

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?

2008-11-04T12:34:00.000Z

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

2008-09-30T16:22:00.000+01:00

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

2008-07-14T23:13:00.001+01:00

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!

Irralevent breasts and drag artists!

2008-06-10T17:39:00.000+01:00

Hurrah, I finally got some of my DLA, I have paid most my bills off, and I can finally get my bro and dad presents and not feel worried I never get them anything! I only got the Care component and have asked them to look at my Mobility part again. My Rheumo, Dr Sanders, is looking into my MRI I had last year looking to rule out Sacroiliitis (inflamation of the Sacroiliac joint) and Ankylosing Spondylitis [claire: Ankylosaurus Spongebobitis) (A form of Arthritis that effects the Sacroiliac Joints and the spine.)

So fingers x'ed I get the results quite soon.

On another weird and wonderful note. As I was walking from the bus stop home after my Dr's appt today and I guy asked me about Letty, I said I get severe pain in my leg but am waiting to find out what it is. (having to explain Fibromyalgia is hard normally) But this guy was wearing full army gear, desert camo, helmet and backpack!. He said he does a drag act and "wanted to be gay" I asked him if he had a boyf, he doesn't but his g/f's a prostitute who steals his money!

Then after I told him to take care of himself and think about getting a new girlfriend, I walked slowly home, making sure he didn't see where I live!

Tonight I am looking forward to take out with Geth, missing Oli cos he is away in London for work, and doubling up on my Lyrica! (I Lycra girl!)

xxx

Oh poor sickly me!

2008-06-01T13:25:00.000+01:00

Was at the Doctors on Friday getting antibiotics, as well as the money I have just spent on the Tramodol, means I am spending ALOT! Luckily I discovered a pre-payment certificate which means I am spending £102 a year rather than £400. ;)

I am still really poorly though, and my skin itches from the Tramadol.

I was chatting ot my friend Lita on the phone ( I miss her but we are gona meet up soon!) I had to cut it short cos I nearly threw up!

Can't wait for this infection t go, the new painkillers are working wonders for me :D

Loves and hugs to all xxxx

How to save money on Prescriptions: Get a recepit FP57 if you are unsure if you qualify for help with costs.
Send off for a HC1 form you maybe entitled to even a small discount
http://www.ppa.org.uk/ppa/HC1_form_intro.htm

And if you buy more than 3 items in 3 months it is worth getting a Pre-Pay Certificate. (I have just saved £324)

Check out this link http://www.ppa.org.uk/ppa/hwhc.htm
To see if you can get FREE prescriptions

If you are unsure apply anyway, but always get your FP57.

Claire x

Hospital again

2008-05-28T23:38:00.000+01:00

I was in A&E today, was walking form the Asda to Hulme, which I usually do on a Wednesday for my cognative behaviour therapy session and then all of a sudden I felt a raging heat from my body and severe pain, i could barely walk and cried all the way to the Zion Centre, where I got in and told the workers I was in agony. I called my Dr's...half day....called the out of hours...couldnt get me transport til 7pm (it was 3pm)Called an Ambulance and the paramedics were 2 ladies who were ace!!! Had Gas and Air, hated that! And waitied 2 hours to be seen, they gave me Tramodol and sent me home (with a prescription for more) and here I am all smooshy. With lovely flowers from Oli and some chocolate and a hot water bottle I got more care at home than I did at the hospital, at home with Oli I am a person (and Geth too, he's pretty good at keeping me in Choccy). Oli's a star. I think I have told him a stupid amount of times how much I love him today and wrote him a really shit poem on a post it note too!

Nights x

2008-05-20T22:05:00.000+01:00

Oh my favourite simple thing today is cats, I saw the cutest one today, a magpie was teasing it!

The cost of medication

2008-05-20T21:31:00.000+01:00

I got a really sore throat today, means I got to go back the Doctors cos the lozengers, (tasty as they are) aren't working. I was there today, sorting out more pain relief, got more pills for period pain but it's good news, my Dr said I can take my contraceptive pill non stop for 3 months which means no more periods during that period. Which means less pain for me and less cost in painkillers.
My doseage goes up when I get my period, my Dr said that woman with FMS tend to have bad periods (reasons unknown!!!)
I am so worried about the cost of the pills, it's £7.10 for a prescription, my list of Medication is now:

A month:
Trazodone
Diclofenac
Lyrica
Co-codamol
total: £28.40

3 months:
2 inhalers
Pill (it's free until I am 25!)
New anti inflams
total £21.30

A yearly total of: £426

(Correct it if it's wrong)

I have applied to see what help we can get, we get a little, but not with prescriptions even though I don't work and we are on a low income.

Hopefully it will be sorted, hopefully I don't have to fight with the DLA over how my body works. Hopefully I get the middle/higher rate I deserve.

For those who have physically spent time with me know that I really struggle, I walk at a snails pace even with Letty (my walking stick) I rub all my painful parts, parts of me just "go". I can't stay out for long (nowhere seems to have comfortable seating!). I have to sit down regularly. I get dizzy, I wobble and almost fall over! So send me your "good lucks" I need 'em!

Hugs for my 2 readers!

Claire x

2008-05-16T09:23:00.000+01:00

I put some pictures up on my facebook...linkage here http://www.facebook.com/album.php?aid=52447&l=e435d&id=739665379

messy manchester

2008-05-15T19:31:00.000+01:00

Afternoon all. (Well to the one person who reads this!)

I met Siobhan yesterday and we had a blast,

Started out on the bus, got to Oxford road and there was a dribble of fans in football shirts,

Got to the student union and there were a little more, got to Oxford road station, there was a lot, turned into St Peter's square and it was HEAVING! Lots of people amost getting run over. (later to be the same ppl getting run over!)

I got to Piccadilly gardens and headed over to Siobhan's work (Top of Portland street nr Tesco's) and waited for here, the entrance being kept clear by their security guards but they let me wait. Me and Siobhan headed down the back avoiding Piccadilly Gardens nd went for a coffee in Six Pack Deli, who were very nice and it was quite empty as there was no Alcohol being served, I took some interesting pictures from there, one of Siobhan that she'll kill me if I put up, but I think she looks really nice on it!

So we finished our cold latté’s and headed over towards the Printworks to get something to eat at Old Orleans, we had a giggle and a good old natter there. While I was waiting at the bar (while Siobhan had nipped off) I got chatting to a Rangers fan who was a huge Corrie fan too, he did a great impression of Ashley from Corrie, I think his name was Ashley, he started talking to me, said I looked like his wife Claire (which is not the 1st time I've heard that!) He laughed when I told him my name.

When we went outside after our meals, we wanted to see if we could get into a fan zone (HA! fat chance!) we wondered down to Piccadilly gardens, Siobhan had a plan, they had a big TV in her office! So we headed over to her office. There was no one but us there, and we ate munchies as we tried to fix the freeview, the signal for itv1 was so poor.

Then BING!

I had an idea; we could watch it on the interwebs. And that we did, with an ear phone each!!!

After the match, (I was so shocked at the last goal omg! and more annoyed at the 1st as I knew there would be loads of annoyed fans.) we headed outside, played hope the doors shut and no one goes in! We almost failed!

After that I walked to the coach station and got my bus round the corner. That’s when it got bad. A lady didn’t hear the bus driver change his route (111 to 85!) so he argued with her until we got round the corner on Canal Street. Then as we turned toward Oxford Road the bus couldn’t turn the corner because of another bus, he shouted at the driver. Then as he FINALLY got to turn some idiot on a bike (push) went zooming past and we nearly crashed then seconds later a couple nearly eat the front of our bus as they walked out between 2 buses on the opposite side!!!!

By this time our driver (Gonzalez…Speedy) was pretty riled up, we got too oxford road opposite the Spar and some guy walked out in front of the bus. So the bus driver got out of his seat and yelled at him, and the guy threatened him with a bottle, TWICE! The guy chased the bus, I was petrified, wasn’t quick enough to get any of it on my phone though.

The stop before mine, some guy had a go at the driver for not letting him off, the guy was off his face, was swearing at the back previously on some drug fuelled tourettes rant, and he got up after all the people were off the bus for that stop! I got up quickly and spoke to the driver. Asked him if he was going home after what had happened. He said, he was told to go back round again, he said he hated his job and couldn’t wait to leave. I told him it was really unfair that he was being treated that way and I hoped it got a little better for him. He thanked me; I hope he had vented enough so the other passengers weren’t in any danger!!! I was happy to get off the bus though, he was driving quite quickly!

Got to the door and a text from Siobhan, we’d just missed a riot!

Then I got home, hot water bottle waiting for me (I really do Love Oli) and chatted about my eventful day!

Slept like a LOG on the drugs I took before I went to bed cos after that day I was ACHING so badly. Had a nap as well today, which was thankfully uneventful, went the Morrison’s oooh!

And now I have to finish as Oli wants his computer back!!!

Loves and stuffs.

Old Poems from my blogs

2008-05-14T11:01:00.000+01:00

09 May 2005

ok ok here goes

Now this is on the spot poetry for ya, I just made it up now!

Key Bored

"Ok Ok", Replies for the day,
Something more, something deeper,
"I know, I know" I usually say,
Something sore, something cheaper.

Reaching out, fingers touching,
Never holding, never grasping,
Screaming out, eyes listening
Speaking words and never kissing

"Hello Hello", words they all say,
Something warm, something feeling,
"Hugs, Hugs" still words they say
Something wet, something healing

I change pace when we meet
My poetry switch
Words from my mouth to your lips
I change my smile when we meet
Minus the bitch
Hands to your hands.
Lips to your skin.
Transfering the soul,
Through words from within,

(please 'scuse my grammer! I wll fix it pwomise x )

--------------------------------------------

another poem

poetry from phone to page

This is a poem for all you Anti-Crazy frog, Anti- cutesie annoying ringtone!
(I doesn't bother me that much, I got a SOH!!!)

When Ringtones Ruled The World!

The ringtone, real tone.
Monocrome Death.
The high pitch, brain itch.
Left to twitch, left.

The Mozart, dead heart.
Turn to beeps and squeaks and tweaks,
Fade to whispers,
Fade to ears that deafness speaks.

------------------------------------

07 June

Poor you, my dear.

It's all about thou,
Your pain pours down.
No sympathy, empathy,
To you we are empty.

Love to you now,
It still pours down.
Personallity, Lost to thee,
Play with them, play with me,
You're the centre of gravity.

Looking in the infinate mirror,
I see you in a film horror.
The hole that keeps us in,
Narcissism is your sin.
You're the first person shooter,
We live in your computer,
Win the happiness to fly,
You shoot us down before you die

You're so vain
You'll probably think this song is about you.

--------------------------------

25 August

We knew you the hard way.

I cried today my heart melting more
when i saw in st. james the people who mourn
for Anthony Walker a kind hearted lad
who gave and was good and the rest of this sad
I never knew that good guy, and this is quite bad
that the bastards who killed him had
slaughter this boy for the colour of his skin
the stories the film the poetry and speak just to say YES we are all blood within

Scousers so friendly, so close and so tight
Through Disaster and Murder, poverty and strife
A place brought together by difference of race
The docks brought us here but this is a disgrace
That two young boys would take a life from this place

3000 people attended today
Those with no room stayed out in the rain
I viewed on the TV the eyes showed me pain
for thier son their brother and their friend

the Arsenal supporter and basketball lawyer
Befriending the loners and geeks
Someone I wouldnt mind knowing

but not this way.

ITs left a hollow in my heart
and confusion in my soul
that they murder and delete,
And for what? Colour control?

And although I am quite different
IN views and skin and ways
I am a good person, I hope,
And wish for happy days

And I hope, in your heaven, your dreams coming true
Helping others with a passion just like you were meant to do.

*This was written quite tearfully. I have never understood why a person could hate another just for skin colour, or beliefs or for clothes or taste in music etc etc. It worries me, who's next? what sort of people is our society bringing up? so many questions it raises and I could go on. But more I feel, even though i'm not religious and anthony was, who cares. He seemed a good person and it is the biggest shame that we had to get to know him this way*

Rest in Peace Anthony

-------------------------------

ode to truth and snow
Current mood: Poetic

"Beauty is truth, truth beauty," - that is all

Ye know on earth, and all ye need to know."

I want to learn the truth to see the beauty,

Religious concrete stops us, working through

The wall that is before us,

Ourselves to self adore us,

We can find the vision of truth, more beautiful with proof.

When the sky is blue or grey,

What makes the truth of the day,

Less beautiful when you know,

That the invisible hand of gravity pulls down snow,

Under cold microscopes a snowflake shape,

Is more beautiful than the naked imagination could fake.

*pictures from snowcrystals.com

First 2 lines from John Keats' Ode on a Grecian Urn...for those uncultured lot!

And the rest purely my own!

-------------------------------------

23 Aug 2006

Blissfully Sinful
Current mood: bored
Category: Writing and Poetry

Little book of pictures see ,
The thumbnails of pornography,
The numbness that is seems to breed,
Everytime lust has to feed.

Listening to whispers slow,
The violence of language grow,
To Punishment and Smut,
You Bitch, You Whore, You Slut!

Feeling of the gentle touch,
To blood when it gets too much,
When the pain and pleasure mix,
Like addicts top the maximum fix.

Who wants an angel breeze,
When pig tails pulled at devils knees,
Imagination sores and flys,
While innocence is love and lies.

Simplicity is heavenly,
As is hardcore pornography,
As is a cuddle when the playing ends,
As is three or more playing friends!

Claire Smith 23-8-6

xCx

---------------------------------------------------------

07 Aug 2006

Inside Out
Category: Writing and Poetry

we can't pretend that were not inspired
By the wingless angels spell
Oh well

You cant take the mechanical feeder
and take away our muses
confuses

And just because our sight is not the same
Don't tear us down from clouds

We see what you don't
Hidden in vaults
transmitted from soul atteners
We see the aura of worlds
hidded from eyes
inside the smallest string vibrator

Abstracted to show I can hide as well
Ideas not there until its past
I'll last

.....................................................................................

Ok so you may think poetry is emo, teenage angst or pretensious bull shit
but I'd be happy to explain my ideas behind that poem.

To read it think of it as not a linear thought but a sphere of random thoughts that collect to become a whole and no matter where you start on the sphere you will always see it whole in the end. That's why I love quantum shit! lol!

XXXXXxxxxxxx

----------------------------------------------------------------

25 Jul 2006

seratoninly insane
Category: Writing and Poetry

I feel seratoninly insane,
There are forces in my mind and in my brain,
Working holes into me like my first cocaine,
And there's nothing I can do for it.

Withdrawal when I am all alone,
And aching for the voice from the telephone,
A yearning for the dark dark eyes to be shown,
And there's nothing I can to but wait

I have forgetten where i put it
My sense from my head pocket,
There are things in my eye socket,
Love has drugged and blinded me!

In mystical times I'd be taken,
Leeched, cut open and shaken,
Nowadays I'm just faking,
Coolness to hide insanity.

This is for Oli who literally drives me insane and messes with my body chemicals and makes me miss him when I want to be thinking about other things!!!!

-----------------------------------------------------------------

30 Jun 2006

A short poem
Current mood: okay
Category: Writing and Poetry

My Ancester.

At the Sambre-Oise Canal
Did you see the Poet fall down?

2008-05-14T10:51:00.001+01:00

Blog from 2006

On the 6th of May I was in hospital with my back, I pulled some deep muscles, not bending form the Knees tut tut (heehee!) and at first I was having mucho fun with the drugs up until now! My memory is .... well, getting a bit swiss chesseed! So I am a little grumpy about it and I am forgetting things like how to spell words, use grammer and speak! Using phrases more often than I do, cos I am a bit of a muppet, like "pass us the thing that does stuff" "what have I come in here for" "what time did I take my tablets" and "where did I put my sanity!" wheeeeeeeeeeeeeeeeeeeeeee

But other than that I am ok :P sorry for the moan but I needed that. I have another blog on my msn space but u gota be on my messenger to read it! so if I like thee, thoust may see it! ooer

ta-ra la xxxx

2008-05-14T10:45:00.000+01:00

*Forgot to mention*

My main reason for being even more stressed re money, is that my Grandad Halsall is ill and I can't afford to go to see him :(

2008-05-14T08:58:00.000+01:00

Morning. Today is going to be a fun day, with all the footy fans in Manchester atm Siobhan is finishing work early and has decided that we should go out in town, which will be very fun. We are both big people watchers, (I am personally looking out for fit ones with breasts!) but you know it's gona be amusing. And she has a 241 vouchers for Old Orleans in the Printworks ;)

I also need to pick up a plastic shovel or summit similar (probably go the charity shop in Chorlton) just to pick up Denny's poops and clean his cage.

I had Denny (Denethor II, Steward of Gondor Gizmo Crane Smith) on my tum last night snuggled in my hands, was unbelievably cute and stroking him is very relaxing, I nearly fell asleep. I still haven't taken him the vets, his brother has a skin condition, which I think he has too, I need someone to go with me cos it's a bit too much for me for to carry him there and back and the cost of course.

The thing being, I look so normal (and since my photoshoot a little hot, oh yeah!) but I ache all over. I mean, just now I got shoulder ache, back ache, headache, tummy ache, skin prickles in my hands, and feeling exhausted! I did sleep better, had a relax with Denny before hand really helped.

Oli fell asleep on me when we got into bed which was really nice, calmed me. So feeling better than I would normally in a morning.

Trying not to think of my lack of money, after finishing paying my bills (and not all of them) I have nothing left, I got a choice between paying bills and Oli's present. It's stressful but I can't let it get to me. May leave it for another 2 weeks, the exhibit we want ot see runs until 29th June anyway. I am hoping to hear from the DLA ppl but I know that takes sooo long.

Well I will update after my lengthy day.

My favourite siumple thing this mornin has been taking to Tak, he's handsome and single girls!

MWAH
Claire

2008-05-13T15:42:00.000+01:00

Hullo,

Set this up just to see how I get on, a I need some structure and disipline in my life! And I need to vent, rant, help, giggle, make silly comments and show the "world" my insides. Bleugh!

Today I was rather good and did my physio exercises and left the house at 11am.

Not long got back, picked up a birthday card for my beloved, It was a toss up between the one I got him and the one that said "Princess for a day" with a pic of Princess Leia on the front.

Had a walk around the arndale (Well slowly headed towards the exit), picked up a duck wrap, ate half of it, got home and ate my desert (NOM NOM) now just chillin.

I am really enjoying some of my physio exercises, "the step" is my favourite it really gets my heart going. Finding it really hard to find things I can do that really get my blood pumping (minus bedroom olympics of course!) without hurting myself, so going up and down on the bottom step of my staircase is wonderful, life is pretty simple atm, the simple things keep me going.

List includes:
Music (especially cheerful /comedy tunes)
Funny texts from friends,
Having Oli and Geth and Denny and Theo about the house (Guinea pigs don't go out to work :D)
Youtube
Cloud free blue sky
Talking to strangers at bus stops!
Chocolate
Good TV
Scary films
comfortable bed
my blanket (yeah I have one!)

Things I miss:
My girly friends,
Having a good natter with people in the real life!
Going the pub,
being able to go out on a night out.
Painlessness without brain fog

I really wish my friends would visit me more often, and I could visit them, but hey am working my way there! ;)

Loves

Clairepie.

Please comment on things that you like, the small simple things, and the things you miss for one reason or other you can't do.

xxx

MY First Fibro Musing.

2008-03-19T10:47:00.000Z

It's been a while since I have blogged, even when I was first diagnosed with Fibromyaligia (FMS) and Hypermobility (HS). I was diagnosed on December 27th, since then life has been a whirlwind of collecting information, handing it to others and telling relevent authorities about it.

My family have been amazing, and have put up many post on facebook* There's nothing better than having family and friends around you. We have an affectionate term in our family for when you are ill/broke/otherwise incapacitated, which my boyfriend doesn't like, but I do! Spacker!

I am taking that word back - I am happy to be a Spack!

My mum and dad are pretty much broken (I do think my dad has FMS but that's another story!) and my sisters have their unhealthy moments, so we are the Spacker Smith Family!
I like it that way, it's nice to know that when you are ill that other people know EXACTLY how you are feeling.

*My sister had suffered for a long time with fibromyalgia before she was diagnosed. She went thro (sic) all sorts before she finally got the answers to the pain she was going thro(sic). Im pleased that she can finally get the treatment she needs. She gets on with her life even tho every day is painful, she hasnt let it break her spirit. I hope people become more aware of fibromyalgia and its effects so more people can be helped.

*Ah, I'll love you no matter how spaccy you get =)