The sun is shining, I’m lying on my sofa basking in its rays, letting the heat soothe my muscles and aching bones.
Most days I could do this, well in fact every day I could do this.
I have a condition, a problem a pain in the arse, neck, legs, back, arms, hands, knees, head. I think you get the picture.
Many of you know about my condition, let’s give its proper name Fibromyalgia. Stupid name. Stupid condition.
I take medication for my condition, but they don’t always do what I want them to do.
When I’m on the maximum it steals my brain! The robbing bastard I hear you cry! They take the skill of talking away. Those formative early years of learning new words feel like they never happened!
The drugs leave me a little confused. More than what is the norm for me anyway. Fibromyalgia comes with its own “fibro fog” as suffers and Drs have given its adopted name for one of its shitty symptoms. As if the every day muscle migraines, stiff legs, aching hands etc etc weren’t enough.
So when I get ill, I feel I’m already a long way from normal ill. Cause I’m ill ALL THE TIME. Fibro never goes. If I stayed in bed and rested to get better I would never get up.
Sometimes I wish I could pass my fibro on, like a cold, do my stint then generously pass it on to the next victim!
Now that sounds a bit cruel I know. But I’ve had my turn. I’ve had enough. I promise to nurse the person to take it from me.
But it’s mine forever. I get to keep it all to myself.
I would like people to experience the feeling of Fibromyalgia. Just so they could understand just for an hour what it feels like to me and millions of others out there who struggle on every day.
I’ve been trying to wean off my pain blockers, to try and re gain ownership of my brain, thoughts and words!
It’s not going well.
I’m having some weird nerve reaction to it. My body doesn’t seem to be taking it to kindly! I’m not going to bore you with symptoms. Let’s just say Its shit, seems fair!
I’ve had the dose put back up.
So back to my point, see I’ve lost my train of thought. Forgotten where I was going with this……….
Yep that’s it.
I’m a pain. That’s how it feels. A pain that my wonderful husband is practically my carer along side his very demanding full time job.
I’m a pain to the kids when I’m grouchy or a day has to be cancelled cause it’s too much that day.
They are desperate to go swimming, but if the water is too cold I’m done for!
I don’t want sympathy.
What I do want is an awareness that many people all though looking fit n well on the outside, are in a lot of pain and may need support sometimes but don’t like to ask for the fear of their pain becoming a pain.
I’m very lucky to have a supportive family and friends surrounding me. My wonderful husband will rub my legs till they settle and I can sleep. My mum will look after me and the kids at a moments notice. And great friends who will take my kiddies to and from school again at he drop of the hat.
I thank them all. X
I hope this made sense and the word thingys are in the right order!
Much love to you all.
I promise a happier post next time!
The Photo is of me on a bad pain day. See I look normal! Ish!
I’ve just been asked on Twitter ” How do I do it ?”
Do what ?
Look after four children .
Now with only having a 140 characters to answer, one word spang to mind TEAMWORK.
To effectively look after and parent our four children Mr6 and I have to be a team. We have to pull together, be a unit and mutually support each other every day. I suppose you could compare us to a football team, it certainly feels like it half the time. Picture, if you will, myself and Mr6 as the managers, but of a small unprofitable club of which we have to fulfill many roles. Such as, Coach, physio, accountants, first aiders, kit washers, PR managers even the team psychologist, and most importantly a referee !
We have to have a carefully considered game plan every time we leave the house as a family; who’s going where, what position in the car is the most unconfrontational, who has the first aid kit, and spare clean kit for the inevitable fall (probably deliberate) into a muddy puddle, for which I hold bloody Peppa Pig personally responsible !
Then when out on a day trip or family occasion, the coach comes out in us both. A full on pep talk on how behave ensues. ” No arguing, no fighting, be polite, smile and talk to great-aunt flo even though she scares the living bejesus out of you, don’t get too silly and please for the love of God,don’t tell the relatives how much mummy swears and tweets, yep there’s the PR manager for you !
But still MR6 and I remain solid, if one has said no to something,no matter if the other really thinks it would be ok, it’s still a NO ! This we have learnt over time, many an argument has been started when one of us has said no, then the other has said ” oh go on it will be alright, it wont hurt them, or the worst one, when a grandparent has asked to do something with the children you know the other wont agree with, that one by the way IS GROUNDS FOR DIVORCE !!!X
Ok we do get times when we think the other is perhaps being a little unreasonable, think that a bad mood/day has fogged their judgement. I know im guilty of this and so is Mr6, but we have to stand together and agree with their decision, if you don’t you are giving your children carte blanche to exploit gaps in the party line, they are crafty little buggers and it doesnt take long before they are playing you off each other. This is when the rows start and chaos begins !
Ok, when the kids have gone to bed or out of ear shot, then you may lay in to the other half for being completely unreasonable and utterly grumpy old fart, and if they side with their mother again I WILL FILE FOR DIVORCE AND BEAT
I have a real pet hate of parenting left to just one parent, whilst the other gets to be the good guy, the kids favourite. This is unfair on the other parent and on the children it leads to disputes and unreasonable requests. So be a team, work together: it took two of you to make these babies, mind you I bet one of you came first and not together !!! ( ooh Mrs 6 outrageous ! )
Tonight I’m not quite sure where to start ?
Its been a really busy week, I’ve had no time to post, and quite frankly neither the inclination. My week has been taken up by the lad. It’s hard to say whats been going on because we are still not sure ourselves and I really don’t want to draw any unnecessary attention to us or the situation.
He has spent nearly three days in the hospital with odd symptoms which continue to baffle the consultants and us, two visits in one day to A and E, a Dr visit then another trip to A and E with him being admitted. So yep its been stressful and as always these things have a knock on effect on the whole family.
The night he was admitted, Mr6 and I should have been attending our eldest daughters first senior school parents evening, and we were gutted to have missed it, but being a parent makes you make choices. Often unfair choices and undoubtedly someone will lose out.
It upset our middle daughter she really dislikes sudden change, but thankfully wonderful grandparents stepped in and calmed the house once more.
And again whilst in hospital with your child, come more decisions, who should stay, do you let them poke and prod your precious little one, But luckily the Drs take those decisions away from you and most of the time you follow their lead. But what when they turn to you, look to you for clues, look at you with baffled expressions. Then what ?
We look at he Drs for answers and expect them to just know with one look whats going on, and sometimes they don’t. This is not their fault, but It just made me realise how much we look to them and expect just to know. The pressure these Drs and nurses have on them is phenomenal.
So what now……
We wait and watch, as he continues to bemuse the Consultants. It’s not serious, this we have been reassured of, just odd and the words never seen it before keep cropping up. But all involved were brilliant, all worked really hard for my boy, and continue to do so. His consultant called me today to see how he was and that he had spoken to another hospital for advice. Now that to me is good service, and we knock our nhs!!
So, this is a new path as a parent, one of not knowing. But one thing I do know is that we have had the best care given to us, who continue to work for us, and we are lucky to have such a system in place.
Thats me back in 2010 with Fyfe Dangerfield thats when it all started.
I’ve been sat at the laptop tonight working out where this blog should take me next.
So I’ve decided to start with talking about ME !
If we are to be friends, you should know a little about me right? So what do you want to know? As this is not an instant messenger or Twitter (insert twitch here) I’m going to have to try to second guess what I think you would like to know, and to be honest, only what I’m prepared to let you know. The skeletons in my closet are quite comfy thankyou.
So basics first.
- I’m female: you got that right from the avatar, which is as current as october last yr.taken at a gig with my niece.
- mid thirties : wishing I was 20 again, mentally I never left.
- Married : Engaged three times, at 17 to my first love, then at 21 to the archetypal long haired biker rebel type I thought I wanted, then at 22 (yes I know short gap) to my husband, there’s a tryst in there somewhere, but not sure its ready for an airing yet!
- Four children : I had my first daughter at 22 (yes I know same age as above!) I had Number two Daughter at 26, number three daughter at 29, and finally number one son at 33.
- I’m a stay at home mum : It’s the best and the worst.
- I’m ginger : but again you got that from the Avi right !
- I LOVE MY MUSIC : MOSTLY ROCK FOUNDATIONS,NIN, TYPE O NEGATIVE, ETC ETC but my tastes are about as eclectic as they come. Which leads us to;
- I’m obsessed with, FYFE DANGERFIELD and his band THE GUILLEMOTS: NOT ROCK I know, but this guy, his voice, lyrics, melodies, leave me in a teen like state, idolising his every move.
- I’ve met Fyfe dangerfield twice: he broke my heart twice.
- I have tattoos : 4 to be exact
- I’ve been pierced a few times: but never there !
- I’ve never flown: meh !
- I fall in love easily: Mr6 knows this and it’s always band frontmen !
- Film scores are a passion : I fall asleep to them, cry to them, they excite me and I think I should come with my own score because It would be epic.
- I’ve had eating disorders : yeah not ready for that one yet.
- I live with a condition called Fibromyalgia : It sucks, what people can’t see doesnt hurt them.
- I swear too much : feckin do !
- I want to be an artist, writer, singer, film star, racing driver, groupie, work in a fetish shop, band manager, married to fyfe Dangerfield, scott Mathews, and Taylor launtner, yes all at the same time!
- I can’t decide what I want to be when I grow up.
- I want to take a rd trip across America: IN a muscle car, or vintage sports.
- I get obsessed about films and will watch them over and over.
- I get obsessed A LOT : YOU’VE GOT THAT RIGHT!
- I miss twitter :
- I’M a flirt: see twitter !
- I’VE been featured on Lauren Laverns 6 music feature mix tapes: with a tape Mr 6 made for me when we started dating
- I love seeing live bands: best gigs , NIN, TORI AMOS, WHITE STRIPES TYPE O NEGATIVE, SCOTT MATTHEWS, and drum roll….. FYFE DANGERFIELD, THE GUILLEMOTS.
- I have two big brothers: I have youngest child syndrome.
- I once stayed in a Convent: With nuns and everything
- I LOVE MY HUSBAND AND CHILDREN WITH EVERY FIBRE OF MY BEING AND THEY ARE MY WORLD: But they know IF Fyfe came a knocking ……..! x ( see that obsessed !)
- Sexytime is awesome: !!!!!!!!!
So what do you think? Am I a keeper ? ! I hope this answered a few of your questions, and maybe made you want to ask me some !
As always I would love to hear back from you, tell me a little about yourself.
I would just like to say thanks to OOK LIBRARIAN, cause if I hadn’t read his thought of the day, this post would still be a blank page. ( theres a link to his blog on my home page, try as i might I cant get it to link to here, still learning!)
Night all x x x x JO X X X