Thursday, 29 September 2011

spoon or no spoon i'm gonna do it anyway..

 I have been conserving spoons all week (if you are looking at my blog with a what on earth is she on about face, have a read of the The Spoon Theory   One of the best descriptions of living with a fluctuating condition out there)

The notion of saving spoons is really simple, it doesn’t mean I will don my wonderspoonie costume on tomorrow and fly off on a fibro-girl adventure - although id love a cartoon version of myself that sounds great, but in a vain attempt to stick to the point I wont go off on a crazy tangent.
If you have not been diagnosed, are new to it or have lived with a fluctuating condition for a while, hell if you are friends, family with a spoonie or a the lover of one (have I covered everyone) getting your head round saving your energy to do something really important to you can take a while to make sense, and even when you do very little, rest lots and still have sod all spoons can be demoralising to say the least.

I get so frustrated when I have to say no to things, work out in advance what I can do and what is really beyond me, I'm a stubborn woman and very often "Lovely man" has to remind me that I’m not superwoman and can't. I so hate the word can’t. Before I got ill I had choices, and that is probably the single biggest mental hurdle to get over that you no longer have a choice about somethings.

 What I mean is you wake up one day and bam you really cant get out of bed and go to work, you have cancel the third weekend's worth of activities in a row, gone to bed at 8 cause your so tired and done the not tonight darling my hip hurts never remind my head. And you hit a "brick wall".

In essence the word choice leaves your vocabulary, you may carry on for a while thinking if I cut my hours at work I can carry on, I will just go out for 2 hours on a Friday, get a cleaner in or at least ask someone to help, buy really easy to care for clothes and swap your beloved heels for sensible flats. Or if you’re a man the non iron shirts start to look appealing.  But no matter what you do at some point you have to get honest about how your life really is, not how you want it to be.

I’m sorry to be the bearer of such news and in a weird way it is the first step to acceptance, reframing how you view the world, will in the end I hope allow you to find a way of having your cake and eating it, you just choose a new cake and go from eating it all in one go to slicing it up and nibbling. I’ve never been very good at nibbling, so id rather has two cakes but that takes me back to denial. How on earth did I stray into cake?.

Bear with me I am making a point, if slightly long winded, choice and honesty - When you leave behind denial and trying to live life as you once did at some point there is a very big chance you will hit depression and anger. It’s perfectly natural. It can manifest in many ways, I hid for ages at first I proclaimed loudly I had fibro, I talked a good talk about how I accepted it, and was ok with it and glad it had a name.  I really did talk utter bollox at times. I apologise now to the friends who had to stand back, listen and wait for me to fall, while I got lost in a very dark lonely place. The truth is no matter how much I said the words, I didn’t believe them. My anger was directed at me, I no longer believed in me, I had absolutely no bloody idea what to do.

That first winter when I was newly diagnosed what was probably the loneliest destructive place I have ever been in, no matter what I said to the contrary I was lying to myself and those who loved me. I lived in a small council flat, that first winter was cold snowy one, so I was housebound and besides my sweet friend who I have been saving the spoons for (Its her wedding tomorrow whoop whoop) along with my best bird and Mrs woman I rarely saw anyone, I rarely ventured out, I comfort ate, my house was a mess, my relationship with my son was at an all time low. And of course my Fibro was out of control. Spending hours on my soda, barely able to move and look after myself is a terrible situation to have been in.

I became locked in a world of pain, fear and loneliness. I was facing living with this for the rest of my life with no worth or choice. As the spring came so did hope, I don’t really know where it flowered from, or how it came about perhaps it was at some deep level I knew that I did have a CHOICE - I could give up and get swallowed up in a world of passively waiting for others to help me or I could find a way back to being a woman of worth. I had no idea how I was going to do it, or what my life would look like. But I knew one thing with certainly I would never allow myself to go back to where I had been.

This blog entry has become a bit of an epic, What im trying to say is be honest about where your at, even it’s only to yourself. Its ok to be angry, fucked off, sad, scared, mind bendingly pissed off, or euphoric (although if that’s the case id say check your medication side effects) There is support out there, but until you become your own advocate no body will be able to help. Simply because you won’t be ready to listen. In your head even if you ask for it somewhere you will be saying YEAH BUT!

I still say yeah but, and don’t do as I’m told and fall over, use my spoons up on all the silly things and not always the important stuff, I’m human and I get it wrong and I’m still learning. Tomorrow I will be a bridesmaid, I know I won’t be the last standing – but I will be there and I will have a ball and be the best I can be. Next week I will be a broken wreck. but sometimes its worth  it – in the life of a spoonie its all about  using the only real the choice you do have, do nothing, use your precious energy little by little or sometimes to empty the whole dam drawer and go for it. But it’s being honest about it and not resenting or wasting energy on thinking why me.

Saturday, 24 September 2011

Denial is not a river in Egypt

There is no magic pill, drink or technique that will cure you of having a chronic health condition. Well-meaning people will say in the early days, "Oooh try this thing".  Or, "I've heard if you cut out bread, wheat and chocolate digestives you will be just like you used to be."

And that’s the key - just like you USED to be.

You know!  Normal.  When you thought nothing of working all week.  Getting home on a Friday, then quick change and off out.  Get the housework done Saturday, out with friends, chill out on a Sunday.  Plan your week, maybe even plan months ahead.

Do you remember being that person?  I do!  I remember her saying, "Yeah.  OK.  Well, I'm busy for ages.  Can we pencil something in for October?", when you’re sweltering in the July heat.  I worked hard as a high flyer.  Making important decisions, planning months in advance, having a CHOICE.  Even if it was wasting my life putting off what I didn’t really want to do; or was frightened of doing.

Getting diagnosed is like bereavement. Sadly the person you are mourning is yourself.  You begin to see life differently and it falls into 'before' you got ill and 'after'. Everything is now measured by that.  "Before I got ill, I could and now I’m ill, I can’t."

Friends and family listen patiently, offer helpful advice and sometimes get caught up in trying to find a cure, or maybe even think you're faking it a little.  After all, you don’t really look sick, do you?  How can you be full of beans one day and turning down their invitation the next?  You show them the spoon theory, explain it and hope they understand.  Maybe you even try and keep up with them; denying you're ill and putting on a brave face.  It's not done to whinge or complain.  There is always someone worse off than you.

No matter how supportive everyone is, the guilt of letting people down and your need to be NORMAL drives you into denial.  You carry on trying to do everything you did before, burning yourself out so you end up more likely to not go out in the evening  Weekends turn into a duvet-fest of sleep, pain and a chance to take off the mask of “I’m ok.”  You will be back to your old self just as soon as the doctor prescribes you the right pain killers, when the physio stops talking and actually helps you. Of course there is nothing YOU can do.

Often the first thing you do is try and find other people like you.  Although they aren’t really like you because they have given up.  You're only joining a forum, reading a book, going to a support group to find out about the latest drug, or the types of treatment that are out there so you can go back to your GP and ask for it.  You need information so you can get everything you need. Where’s the best Rheumatologist?  Supportive GP?  Latest research?  What diet should you be on?  It's an endless search for the holy grail.  The one thing that will give you the key back to NORMALITY, back to the person you are. Not this sick person that’s not you.

Dammit how dare this stupid illness affect you like this, YOU can beat it right, you just need to carry on. If work will be a little flexible you can manage full time, having a little nap when you get in will let you go out, change those killer heels for flats and of course you can dance till dawn, if you’re good all week the carb fest at weekends wont break you, a slow swim than a full work out, meh you never liked the gym anyway. The washing up can wait; maybe you will buy a dishwasher. The new dress you bought without fiddly buttons is well comfy. Only you need to know about the ton of used tissues hidden behind the loo from all he tears, how the pain at night sends you demented, or how bone wearingly tired you are. No one needs to hear that more importantly if you given into it then it becomes REAL and not just a temporary setback on life’s journey.

One day I assure you, or maybe you already know because you have reached the next stage, you hit a brick wall it gets so bad you have to STOP and own up it really is that bad and no you’re not coping. There is something you can do but you have to be ready to recognise that. It has taken me two years to reach this sage and even now on good days I still think I’m superwoman and can do all the things I used to you know before fibro.

If your not ready, or have just been diagnosed then finding an online support group like UK Fibromyalgia or just googling Fibromyalgia will give you a host of information, advice and support. If that’s as much as you do right now, while you struggle to accept that this is here to stay then that’s brilliant.  Maybe you have been bumbling about for a while, saying the words and doing what’s advised but until YOU accept it, on an emotional level then you wont move forward. Its ok to not accept, and perfectly normal. There is help when your ready.

I would like to see a care package and acceptance from the medical establishment that when someone is diagnosed with a life long debilitating condition counselling is offered immediately – and if not then a referral to a support buddy so someone isn’t alone. After all there plenty of people who could do this – Im one of them maybe you could be too. here is some great suff happening in the UK but its patchy and badly advertised - and certainly not very well supported by the people who we turn to first our GP's. but thats definately a whole other blog.

Wednesday, 21 September 2011

Get thee on the scrap heap..I think not without a fight

This is too important - not my words today but a link to the excellant broken of britain blog. a call to action, if we dont make enough noise then we have much to looseplease click below: thank you
The Broken Of Britain: 'never fall ill, never grow old, never become disabled', for if you do, not even Labour will speak up for you.'

well perhaps a few words of my own too..

You may think I'm being reactionary, your too tired, you just want to get through the day and don't have energy for more. imagine then a world that looks like this.

Dear Miss Fibro,
you are not entitled ESA (Employment support allowance) because you have been claiming it for 12 months, we feel you should now be fit for work - even though your condition will not get better, we feel that makes no difference, this is to encourage you to get a job.

In addition to loosing your ESA entitlement, you are no longer eligible for extra support to look for work, that is only available if you are on a qualifying benefit. As you are not deemed disabled, or sick you will be lumped in with everyone else

You application for disability living allowance will now be processed under the personal Independence payment, under the guidance we feel you are capable for being independant, and although you do score some points all of them are low. there fore you are no longer entitled to receive it.

An occupational therapist will be in touch for you to return all the aids and adaptations you currently use, as you are now fit for work and do not need extra help. Our budget is limited and we can only help people who have been judged for support.

an 8 week course in managing your condition is available. medication and relaxation will help you mange, til then take your pills - you are no longer entitled to free prescriptions either.

Yours sincerely the Government.

scary huh? but entirely possible that's why I'm shouting loudly and trying to be one of the many voices campaigning to get a better deal and understanding

Tuesday, 20 September 2011

I may be some time

just a quickie today..I have been trawling around the tinterweb trying to get a feel for whats happening, where besides building this blog as a resource for us fibromites and anyone else who may find it useful.

Well Ive stumbled across a few bits that really have got my goat, i need to go hunt for the info to confirm stuff before i blog about it,. yes my dears research, fact finding and all that jazz. I may be sometimes, digging in the bowls of the DWP is not for the faint hearted.

its a PS not worthy of a whole new shiny page of its own - after delving into the DWP tendering process, while still deeply fecked off with whats going on the bit i was cross about was a journalists breadcrumbs of sloppy writing.

now back to my topic of the day..Oz awaits all will be explained

Monday, 19 September 2011

Roll a 6 to start

I feel a bit like the new girl in the office, I am not really sure where anything is, what the politics are like or who has the best chocolate stash. Never mind where the loo is and who to avoid or make friends with.  Ive never really blogged before or followed one, tweeting is a whole new world and i have a sudden fascination for statistics - well my blog ones anyway. I think i need to get out more.

I found a website that told me how to optimise myself so people follow me, why do i have a sudden urge to sing sing lord of the dance said he, dance dance where ever you may be, I am the lord of the dance said he and I'll lead you all where ever you may be..and so on you get the gist.

I will get to point soon, or maybe this is the point I'm not sure. I'm usually a jump right in kind of woman, pick it all up as I go along. Its just where to start?

At the beginning you say..OK then all you have to do is roll a 6 - its a just a simple game

 the aim of the game is to achieve the holy grail of living with a disability/illness can you guess what that is? a bag of chocolate buttons for the winner

Whoop I rolled a Six - move 5 spaces GP's office - take card from the pile in front of you

The Game
Your Doctor hasn’t really got a clue so go back three spaces and wait for a referral to someone else

The GP is the gate keeper really to having good quality care and access to help or not. It isn't impossible to get help just way more difficult. Some GP's don't believe Fibromyalgia even exists. My new GP does, he is young and not really sure but at least willing to try. I went in with a list of what i needed and left with none of that other than a referral to a clinic.

The wait for he clinic i suspect will be months not weeks and to get the magic golden ticket

The Game
Your occupational therapy  assessment  from Social Services will be delayed due to high demand roll a 3 to continue

 Dam I rolled a 2

Sunday, 18 September 2011

Why me? Why not?

I was diagnosed two years ago, im sure you can search the word Fibromyalgia. I wont bore you with every nuance of my condition - I will proabably link you to useful websites and info. but today is all about me dahlings

Sometimes I do get angry, frustrated, upset and generally fecked off with it, Im human and fairly certain my sainthood application got thrown out due to the odd incedent of decadent behavior, chocolate and gin *cough* anyway moving swiftly on...

Why a blog?
I want to make a difference, i could lie in the road with placard but getting down there, never mind back up again would take so long people would be bored or think im doing some kind of wierd permornace for a placard - well we wont go there.

what can I do? I can talk (ok write for pendants everywhere) about how naivigating the system can make even the most savy cry and whimper as they rock backwards and forwards in dispair - I kid you not.

I will detail my dealings with such joys as the national health service, Department for Work and Pensions, Occupational therapists in Social Services, as I try to retain as much independance as I can.

Dry you may think, i hope not you see I do believe that for the grace go I, I took it all for granted and now If i could I would go back and pick more daisies, climb that big hill or dance til dawn.

This is not a woe is me blog, its a way for me to keep my voice and to somehow get to the holy grail of feeling a useful and worthwhile woman again. In essence accept that which I cannot change and make a bloody difference about the stuff I can

Im really writing this for me..It will be a write it as it is, sometimes tough, I hope informative and sometimes totally absurd - I may even investigate how to still have sex when your hip goes - see Sex sells.

first post...

Welcome to my world, well the bit I plan to share with you. I live with a debilitating thing called Fibromyalgia - a chromic condition with no cure.

Before I got sick I floated around in the muddy puddle of voluntary sector policy making – Yeah I was a community engagement type trying to make the world a better place for people with no voice.

Using all that knowledge in my head, my own opinion and an evidence based appraoch (Get me remembering the jargon), I will surf the waves of the interweb to find out and get beneath current policy, to suggest ways it could work. I want to highlight the bits politicians dont want us to talk about.

Ps - my spelling is an art form - I often cant remember words, spell a mystery prize will be given for the person who can find a well structured sentance spelled correctly with gramma and everything :)