Saturday, 15 November 2008
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.
Wednesday, 12 November 2008
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?
Tuesday, 4 November 2008
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!
Tuesday, 30 September 2008
Monday, 14 July 2008
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!
Tuesday, 10 June 2008
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!)
Sunday, 1 June 2008
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
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.
Wednesday, 28 May 2008
Tuesday, 20 May 2008
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:
Pill (it's free until I am 25!)
New anti inflams
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!
Friday, 16 May 2008
Thursday, 15 May 2008
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.
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.
Wednesday, 14 May 2008
Now this is on the spot poetry for ya, I just made it up now!
"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 )
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.
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.
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.
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
Befriending the loners and geeks
Someone I wouldnt mind knowing
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
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
Little book of pictures see ,
07 Aug 2006
we can't pretend that were not inspired
25 Jul 2006
I feel seratoninly insane,
30 Jun 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
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!
Tuesday, 13 May 2008
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.
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)
Cloud free blue sky
Talking to strangers at bus stops!
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! ;)
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.
Wednesday, 19 March 2008
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 =)