Monday, 11 October 2010

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

Thursday, 23 September 2010

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!

Thursday, 16 September 2010

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

Friday, 10 September 2010

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.

Thursday, 5 August 2010

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

Monday, 5 July 2010

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.


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!

Thursday, 25 March 2010

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 ( 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?!