Treating symptoms wont find a cure:: Fibromyalgia, M.E, Chronic Fatigue Awreness Day

Its international Fibromyalgia, ME, Chronic Fatigue awareness day today.

I have a primary diagnosis of fibromyaglia as many of you will know who read my blog, I also suspect I have M.E, as I fall somewhere between the two descriptions. It doesn't really matter as the list of symptoms I deal with daily are quite bad enough, thank you! I'm going to list them, not because I particularly enjoy having to take note of it all. But because I want to ask a question.

My symptoms
Which despite what the books say, have got progressively worse of the last 3 years - I am ever hopeful that this is as bad as it gets.

Neurological Symptoms

• muscle spasms:
• rippling
• twitching
• stinging/burning electric shock
• can only describe as fizzing
•  wobbly - poor balance
• Numbness in all 4 limbs
• Tingling in all 4 limbs
• clumsy hands (drop things lots) 
• Impaired distance judgement - trip on steps etc

Over sensitivity to:

• Sound - high pitched, loud or even whistling hurts (hands over ears hurt)
• Visual stimulation - my weird eye thing, visual disturbances
• Touch - even lightest of touches can have me squirming - it hurts

Cognitive impairment

• Poor short term memory
• Easily confused on phone (those press 1 for help type things)
• Cannot remember phone messages
• cannot manage large complex forms etc
• Lose words, easily lose words in mid sentence
• Sometimes cannot think how to write (mental block) 

Other weirdness

• Restless leg 
• Insomnia
• None restoiritve sleep (dont get enough REM sleep so wake up knackered)
• Tinitus
• IBS
• Depression (what a shocker not)
• sore throat that never turns into anything

I get the above symptoms to one degree or another, often in short bursts on a regular basis. The tingling can last for 5 minutes then go away. the more tired I become, particularly in the evenings,the more severe they get.

Pain & Fatigue
Many folks think it's just a bit tiring having this, or you get sore. as that's the most common descriptions. Pain and Fatigue are a massive factor in my life, but i wanted you to read the other symptoms first. Lets clear up this myth about fatigue:

I am not always tired - YES that's right, im not. What I expereince is:

Post exertion fatigue that's not commensurate with level of activity.

Uhhh you might be thinking - what that means is I tire very very easily - I have poor stamina so while i can appear fine one day and on top form, if i was to try and do the same day in day out for a couple of weeks or even months i would relapse and badly.

Basically its a lack of stamina, a bit like a battery that doseent full charge. I can and do push it sometimes and there are periods of the year where i have more stamina that at others most notably the summer months.

The more i add in to my day or week the quicker i drain the battery.

Pain - the pain is there and a bit like the fatigue its goes from okish to - I cant bear it please make it stop. I have a high pain threshold and I do think to a certain degree you get used to it and it kind of goes in to the back ground and only when you focus on it does it have a shout.

I take pain killers that for me keep the worst of the pain at bay - It does not haowever do anything for the neuropathic and neurological symptoms. 

So finally my question.

If you read the first list - ignoring the pain and fatigue elements first would you be worried?

would you want to find a cure or hope the medical profession might be looking very hard for a cause of all that?

Yeah I would too but you see with an "invisible illness" like mine the medical establishment the ones with power and influence have decided NOT to put all their effort into finding a cure - not what they put their effort into is

treating the symptoms with

GET (graded exercise therapy)
GAT (graded activity therapy)
CBT (cognitive behaviour therapy)
Anti depressants
Pain killers.
Pshysiotherapy

**Most commonly this is offered as an 8 week Pain Management Course.

In other words they are treating the symptoms and not looking for the cause and only treating one aspect of the symptoms at that. This is because  the esteemed wisdom by the doctors primarily lead by Psychiatrists is that all the above stem from a psychological illness - in other words I just believe im ill. and all the physical symptoms are because I believe it to be true.

There is a huge battle going on - to say that there is no evidence to counter these claims is untrue there is a growing body of evidence to say it is a

Complex Auto Immune disorder Pain Pathways
Small fibre neuropathy - Research showing  nerve ending damage
 New Research:  Wired and tired muscles
Update importance of Mast Cells in FMS & M.E Interesting research

Update New researcg looking at Chronic Fatigue/M.E Looking for Biomarkers/Pathoogy

Basically evidence is beginning to point that is an auto-immune disorder that causes the central nervous system to misfire. Not a psychological disorder.

I am not saying at all that,

moving around and and keeping muscle tone is a good thing, or that access to talking therapies isnt needed, because believe me it is. This is a tough illness to live with, with no outward signs except to people who know me well and can spot when I'm "dropping" the term often used for sudden onset of fatigue, triggers any of the above is happening.

But today of all days its time to follow the ball not not the man as they say - focusing on just the pain and the fatigue is missing all the other things. There is no test for it - and thats the problem because  many in the medical world have fallen into the mistaken belief that with no "physical" test it must have its origin in a psychological disorder.

I am ever hopeful that with the growing body of evidence the breakthrough may come and the idea of only treating the symptoms when you have no idea what so ever of what is causing them in the first place is dangerous science.

 I have no problem with the idea of symptom management - based on common sense.
Pacing is important, not pushing past limits, support for depression, a chance to talk - being supported to understand the link between emotional health and impact in physical health.

BUT

would you make someone with a broken leg do star jumps? no because that would be stupid.
So is devising exercise programmes that push people beyond their limits

would you make someone who gets wobbly in their feet and needs a stick for balance get rid of th stick because they just believe they need it? no because that's stupid 
so is pressurising people into pushing past their limits and relapsing

Would you dismiss all the cognitive, neuropathic symptomss and just focus on 1 aspect of an illness?

would you tell someone to push a bit harder and be positive cause well its only a bit tired and we all get tired?

Today is Fibromyalgia and M.E, chronic fatigue awareness day - I'm always aware of it and while I try extremely hard to be positive and get on with living my life as best i can. I appreciate for the people i love and who love me this is not easy, knowing that I have various things to help me get out and about like  my wheelchair is not easy. trying to understand when I appear ok and can do lots then don't appear for a while is not easy.

I still have the hope that one day I will:

• Be able to work and earn money again in some capacity 
• Be well enough to not need a wheelchair to be able to go out for the whole day and not relapse
• That i will have found a good balance and manage to pace sufficiently to maintain a consistent level of activity (bearing in mind what my definition of that is and yours may be different)

and if I Don't manage to get back to paid employment - thats ok too because my value as a human being in not about how much money i earn, its about how i act and how much i contribute as a:
Wife
Sister
Mother
Daughter
Friend
Member of society
Volunteer

No one ever lay on thier death bed and said I wish Id earned more money they are more likely to say I wish id picked more daisies.

But biggest hope is:

That the researchers find the cause and from there find an effective cure. 

If you are worried you have Fibromyalgia or M.E

Make a list of all the symptoms you experience, how often and severity then go see your doctor.
tell them your symptoms not that you think its fibro. if they dismiss you see another Doctor. Don't give up.

Get some support and information here are some links:

 Fibroaction
Fibromyalgia UK
M.E Association
Online M.E/Chronic fatiugue Support Forum
Facebook look uk UK Fibro

Last but not least - i hear you, I believe you and if you need some support just leave me a message.

This blog is written with thanks to all the people who do beleive me, care about me and support me, even when I doubt myself.

Thank you - you know who you all are x

Are we really Undateable? #BADD13

This isn't the blog i intended to write today for the annual Blogging Against Disablism Day BADD13 I was umming and ahhhing about what to wirte - I wanted to focus on why disabled people are "locked out of society"

Still undecided, I was sent a link to some feedback about a blog - When Lovers and carers Collide I'd written a few months ago about - and when your lover is your carer. Ther lady who read it had felt very alone and reading my pepeice helped her. So here I am once again, exploring sexual identify. 

"Locked Out"

Looking at sexual attitudes is interesting, simply doing a bit of research - well googling stuff I found that the most common news article that came up when you type in the words Sex + Disability  gave me headlines that generally focused on the "undateability" of someone, or them needing to pay for sex!

shock horror hookers used in care home...the Sun

New Low Channel4 controversial - Mothers pays for escort to have sex with disabled son anged 26  Dail Mail

but then has a remarkably balanced piece written by a young disabled woman

Can disabled people enjoy sex when your severely disabled YES - Daily mail

Are Disabled people really undateable? Guardian

You could be fooled into thinking that disabled people never get laid, cant find a partner or are so ugly and "crippled" they can't be sexually fulfilled anyway, are all virgins..and if they arnt then either they got lucky, are rich or were already in a relationship or have paid for it..

Picture of fishnet stocking clad legs,

Having read many of the comments below the articles - people seemed to either think disabled people have such a tough life we ought to allow them a little bit of happiness and if they have to pay for sex, well thats ok, Or say two consneting adults its no ones business. But the assumption was still firmly entrenched that disabled people are NOT dateable in a conventioanl way.

Sex and disability has often been seen as a bit of a tabbo at worst and not even considered at best. The concept of physically disabled people having sex is one thing, but ask the same question about two consenting adults with learning disabilities and I suspect the answer will be different. Why?

In part its because many people associate people with Learning Disabilities with a "child like" innocence and that is often extended into adulthood. To deny that people with some impairments have no sexual feeling or indentify is not for thier benefit but for the people making the assumption. As a parent I firmly believe that all children should have age appropriate information - Im not talking about sexualising children, Im talking about supporting our young people to understand what is and sint appropriate sexual behaviour, and how to feel confident in their own bodies.

Many people find talking about sex to be extremely difficult its can become a taboo subject meaning that young disabled adults are not given age appropriate education, supported to feel body confident and we wonder why the idea that turning to prostitution is the only way to fulfil any kind of sexual urge.

Many people feel incredibly excluded, demoralised and alone thinking they are the only ones who are struggling with their sexual identity.

I feel very strongly that this is inherently linked to our body image, confidence, acceptance and a sense of self that is so often stigmatised and belittled. How many of us want to be been as news paper headline fodder, or a mockumentary star that sensationalises sex, or even pities it.

I blogged recently for the excellent Enahnce The UK - who have a campaign called undressing disability. There is a slow but steady sea change where its important the more visible and "normalised" something becomes the less sensational it is.

Finding decent information, fact sheets, toys, ideas or tips is tricky as you have to navigate your way though shock horror headlines..No one ever pointed me towards good information - all too often its not considered.

Impairments, tastes, sexuality, experiences differ but what we all have in common is a need to find sexual relief in the way that suits us best..some charities think basic care needs are more important but i would argue that the art of getting laid is about confidence - if we actually started to invest in disabled people, where confidence, independence and personal expression where given equal status to care needs we might actually start getting somewhere.

Confident,  body positive people invariably attract people - take Mik Scarlett for instance Sex are we really so different he is not only cool but his wife is so hot even I as a heterosexual woman appreciate her hotness..how did he attract her..his personality, his charisma his confidence and maybe as she said - im sure i read it his bare faced cheek..what ever it was that lit the spark it certainly wasn't because he was sat apologising for his very existence.

I was already ill when i met my lovely LM - if he had met me a year before when I had just come out of a relationship im not sure we would have hit it off not because of my illness but because I wasn't confident, didn't feel sexy and wasn't ready...

its very rarely to do with impairment if it was then many profoundly disabled people would not have partners..thats what disablism is for me - its being "locked out" and not supported to be confident, to aspire and to not feel like we should apologise for ourselves.

Good information is one thing but lets get naked, undress it and not accept that the only kind of sexuality we can explore is one we have to pay for.


sources of help, support and good sex toys..

http://spokzpeople.org.uk/resources.asp

Undressing disability - Enhance the UK

Mick Scarlett - Enhance your sex life

sex toys..if its good enough for 50 shades of grey its good enough for us

Minding my language: Mindfulness

My week so far....
Its been so busy, I've used up loads of spoons, absolutely shattered and while its been good, not sure i paced very well. Will I ever learn this pacing malarkey? I really should have cancelled a few things.

The above is how I would have written up my week so far if two conversations and one blog post  hadn't happened. I had talked to LM recently that i was aware that despite my positive, friendly nature - I was locked into negative self talk, my lack of confidence, self belief and default setting is that  somehow being me isnt quite enough.

Its easily done - Our experiences shape us and no matter what we might want to project, it can sometimes be different to how we show ourselves. I have a slightly daft silly sense of humour but it rarely appears when im around some people - not because its disappeared, but because I get trapped by my past and fears, effectivly preventing me from just enjoying the moment

What can i do about it?
 I dont have to allow anyone to put me down and most of all its important I dont do that. Yes I haven't had a an easy time of it in my life, however Its about Minding my language, how i talk has a huge imapct on how I act, think and feel.

Im really rabbiting on about Mindfullness - something im aware of but beyond nibbling round the edges I haven't practised it in any great depth.

I felt very inspired yesterday talking to my mum about it, and despite a big emotional reaction she has a point. I firmly believe if you have an emotional reaction to something its usually telling you something. You have a choice bury it back down, or see do something about it.

With that in mind...

The givens are Im a spoonie, I walk slowly or use my wheelchair, Im in pain yadda yadda so moving swiftly on

My week so far....

 Ive had a lovely busy week - Im going to reward myself with a nice rest today. I might potter a bit and look forward to relaxing with the afternoon play - while i rest my eyes.

On Monday I went to the park with my mum and fab niece the littlest M - watching her get excited about coming down the slide, or holding my hand as we did the roundabout was great. 

Tuesday I went to Coventry and discussed PIP with the Union Reps - loved it, the access fail in the car park was surreal, the getting stuck in the lift incident was hilarious and the actual meeting was tiring yes but also marvellous. More of that please

Wendesday - a long leisurely chatty lunch with my mum, talking about everything and nothing. Mindfulness, excitedly talking about a work shop im going to facilitate, and finding a wooden train set for the littlest M.

Last night a brilliant lady spent hours helping me do my DLA form - thank you 

Today - This morning cuppa LM made me a cuppa and smile - a lovely way to wake up

I cannot control the way Fibro affects my body, its what it is a complex condition that is still little understood and therefor not effectively treated. What i can do though is control how i respond to it. Instead of saying im so tired and spoonless i cant do anything - its about giving myself permission to rest. I plan to go find out where to get some help to explore mindfulness.

Most important for me is minding my language - I have a life time of programming to address - It wont be easy but I will enjoy the opportunity to explore a new way of looking at the world.

Or should I say be present and paying attention to my world without judgment 

Thanks Mum, The Gherkin eater and Jo you have made a difference and now its time for tea :)

Morning cuppa

Springing into spoon deficit

Every year I promise myself it will be different, I wont get the first rush of spring energy and blow all my spoons in one go..and every year i forget my wishful thinking and dive headlong into things then desperately back peddle as i realise that:

1. I do not have the spoons
2. Pacing is not a dirty word
3. LM does often talk sense & I should listen to him

Why do it - I convince myself im pacing, im desperate to be active, after the long dreary cold, dark, soulless months couped up inside with barely enough energy to get up stairs let alone do stuff. I have got a bit more sensible she says..knowing full well that next week I will feel very different.

Its not that I haven't done anything over the winter, Ive been busy co-founding Disability Matters Uk, writing the odd food blog and other bits and bobs but going out and well doing stuff has been absent.

I decided this year id get a bit more involved in things and meet people, something i failed to do in Leeds. So thanks to the lovely Ermentrude on Twitter i came across Healthwach. The new national network of Healthwatch's) Independent Consumer Champions for Health and Social Care (not struck on the word consumer)

I joined up and had a lovely chat with the Luton one, who are recruiting for board members - right up my street - not too much commitment, but enough to keep me occupied and a chance to make a difference locally.

 If you are sick or disabled its Worth a look - even if your not and you care about the NHS and Social Care then get involved - lets use the powers it has to hold them to account and speak up loudly. Each Healthwatch has the powers to do unannounced visits to care homes, hospitals and any public funded body (Health or Social care) I'm not saying we all wade in - but for me the only way I know to ensure we limit the damage is to be present and do what we can.

It was a funny feeling after 5 years to get board papers again, i went to a meeting as a HW rep for a new well being project - I loved it and had missed that buzz more than I thought. It made me laugh there was a community regeneration bod there (my old profession) asking really good questions. I hope I bought good stuff to the table, especially around pushing that chronic ill health was not just about life limiting conditions and where exactly did they think they would find people like me???

Today im off to Coventry to talk to some Union Reps about the Financial Impact to Local Government when PiP rolls out nationaly this year. You can read more about it at the excellent Pseudo-Living blog - using a Briefing paper written by Prof Simon Duffey at the  Centre for Welfare Reform.
Im hoping to make some good Union Links and see if its possible to spread the word and begin to join some dots. I also get to have lunch with one of my lovely friends so its all for the win...

Having written that I will be in trouble with the Spoon Police - But for the first time in a very long time I feel ok - good days, bad days but in myself im ok. I wont ever get better, but the adaptations, accepting some things and letting go of others has really helped - although shall we remind me of that statement next week...you never know I might get away with it

Cue hollow laughter from the galleries...

Excuse Me....

I was always taught manners cost nothing, equally I would never dream of pushing in front of someone when out doing my food shopping. Id at least say excuse me can i get to that bottle of ketchup.

I notice people are often preoccupied when shopping, they are so focused on their task they simply don't consider the polite convention of manners. I'm struck that perhaps its a symptom of some of the problems we are facing in society - when politeness begins to disappear do we become less tolerant?

There is a deeper reason for this observation, shopping in a wheelchair - either in my manual one or the electric shopper scooter.

I become invisible to all intents and purposes, it happens so often its no longer a one off, just one unthinking person. I now say something, the lack of awareness & focus on their task many, simply don't even think of themselves as rude.

On Saturday I said to a woman who leaned in front of me, she had to reach across me to try and get something, I was sideways on to the aisle talking to LM about what we would buy.

I said "do you want me to move so you can reach that, No No she said I'm fine"...WTF
Me  "well if you wait a moment i can move, you don't have to push past me"

She was so surprised to be called on it..she stepped back and I went from being an obstacle to a person. she did look sheepish and maybe realised she had been focused and simply hadn't seen me;.

It happens so often, yes people get in the way of others and we all want out of doing the shopping as quickly as possible. But should that come at the cost of politeness?

It used to annoy me, now i make a point of politely offering to move, or saying excuse me i will move when ive chosen my item, i realise the wheelchair and trolley takes up space..by and large it knocks people out of their tunnel vision.

I don't take umbrage, hey I'm sure i have been guilty of exactly the same behaviour at time, although I don't recall ever reaching past a person in a wheel chair. but i have grumpily gone about my shopping thinking people were too slow, too annoying too whatever.

Now i speak up a polite cheery excuse me works, people say oh sorry and move. Ive never once had a problem  people often laugh sheepishly as they know dam well I had a point.

People who don't and blithely carry on get me having aq loud conversation with LM about how funny i didn't know my wheelchair made me invisible and maybe we should sell it to MI5 as a stealth machine.

For me there are two ways to tackle subtle discrimination, I can either shout about it and have a go angrily about how dare they, or i can use politeness and make it personal. Im not saying for one minute we shouldnt speak out, but on a human being to human being level I am a one woman mission for polite mindfullness.
Maybe next time that woman goes to reach past someone she may think twice or at least have an awareness.

So if you are reading this as someone who isnt disabled, next time your out shopping just be mindful of us **stealth shoppers we like you have personal space and take a moment to look..i mean really look at the person in the chair. Manners after all cost nothing

**i now include small children in the stealth shopoper club, people dont look and see the pram not the child. at least i can speak up your average 1year old cant..

The Thrifty Kitchen in born

The Thrifty Kitchen is born..

I have been meaning to create a spoonie food blog for ages, I have so many recipes and ideas yet im lax..heck i not good at updating this one..but decided 2013 would be the year i did more of what i love..

talking, writing and passing on my passion for food and baking is one of them so rather than clutter up this blog, i thought it best to have a dedicated space to talk about living on a budget in a thrifty kind of way..

so please do check out The Thrifty Kitchen - blog called Thrifty Cook

If any of you lovely readers live within half hour of my home in Bedfordshire and don't feel confident in the kitchen or want some ideas, tips or a lesson then i would be happy (spoons) willing to pass on some of my food knowledge - i believe in the simple principle of pass it on, the more people who are confident in the kitchen, can live on a small budget and eat good home cooked food the better we will all be for it...

Act Now - to fight for your independence

One for all and all for one…Thank you over 1000 People have already emailed their MP

When I listened to Esther McVey make her commons statement with increasing horror my first thought was – Do I have the strength to fight this!

I’m tired, ill and facing another bleak winter in the sure knowledge that I will be bed bound again very soon – Just like every winter.  That knowledge hangs like a black cloud over our house, my husband gently reminds me when I make plans for January – we like to pretend I will be well enough, knowing full well the chances of me making it to the bathroom unaided become the highlight of my day.

BUT – like you I can’t simply lie back on my pillows and hope someone else will fight for me. That’s not fair because I’m asking other sick and disabled people to do it for me.

There are two massive scary things in the new PIP (Personal Independence Payment) proposals

2 people have written about the 20 metre moving around criteria better than I ever could:

Read them here

 Jane Young Well over 100,000 to lose Motability

Spoonydoc  PIP - A mobile disaster

Secondly the reliably, repeatedly, safely and timely emphasis has not gone into the regulations – which means they are not legally binding and if anyone had to appeal its could not be used as a point of law to show the decision was not fairly made.

The DWP have said it’s inherent and will be in the guidance, but well we know how easy it is to change policy.

The PIP proposals and criteria have to be agreed by parliament – it’s likely to happen in January – so we don’t have much time.

 If you havent read the governments ideas for Personal Independence Payment - that will replace DLA you can read it here PIP Thresholds and asessment criteria

So what can WE do?

We can show our MPs just how short a distance 20 metres is – I bet Esther Mcvey and her DWP cronies are relying on MP’s and the general public not having a clue how short that distance really is and far from promoting independence it will take it away.

Send your MP an E-card before Friday

Make sure the image is embedded in the email - not an attachment - it will have more imact and many MPs wont open attachments

Here’s how

Use one of these images: (right click and press save as )

Or

with the wording -  

Please make my Christmas and do 2 things in January

Don’t vote to take my independence away – Insist the DWP go back to using the threshold criteria:
Cannot walk more than 50 Metres
Can walk 50 metres but no more than 200 Metres
Can walk more than 200 Metres 
*or to use DWP speak stand and move"

Vote to embed the Reliably, Repeatedly, Safely and Timely into the regulations so I’m not left stranded by the whims of future policy

If you have a few spoons and want to make it personal follow these simple instructions to show your MP local places they should know well to highlight just how appallingly bad the 20 metre criteria is

I’m not techy at all if I can do it so can you J

Step 1 – use google map to look up places in your local area

• Your MP’s constituency office
• Distance from your house to your car
• Distance from your house to the nearest bus stop, shop, GPs, Work etc

We need to show our MPs that having a very short distance means we won’t even make it out of our houses to be independent let alone get to important places.

Step 2 – use this link and follow the instructions http://support.google.com/maps/bin/answer.py?hl=en&answer=1628031

Step 3 – Once you have found your house on the map change the google map view to satellite and zoom in til you have a clear picture like this one – make sure you start your measurement from inside your house.

I spend most of my day in the conservatory – which is why I started from the white bit J  - I have blocked out my road but you don’t have to as your MP needs to know you live there in order to reply.

this is what 20 Metres looks like from my house..20.06M to be exact

As you can see – If I reached my car even taking into account of the repeatedly, reliably, safely and timely policy I would FAIL the 20 metre Criteria and therefore would NOT be entitled to enhanced PIP = no access to the Motability Scheme

 Step 4 when you have got the image – press the Print screen button on your keyboard – its is usually on top row of your keyboard says PrtSc

Step 5 open the paint tool and press paste – the image will be there – I cropped the image – save it as a Jpeg and then you can add it to a email

You have both options – of course you could also

Take a photo from your front door and tell your MP 20M wont allow you to have an independent life and to please insist the DWP go back to using the threshold criteria
Cannot walk more than 50 Metres
Can walk more than 50 metres but not more than 200 Metres
Can walk more than 200 metres
*or to use DWP speak "Stand and Move"

Make it personal and the ask is for them to not Vote to take away our independence

We have 3 Days til the MPs break up for Christmas – ACT NOW please don’t just leave it thinking someone else will act for you

You can find your MP here http://findyourmp.parliament.uk/

Thank you 

Thanks to Debbie Sayers and other spoonies for the image ideas and creating them