Long overdue update hello world

Its been absolutely ages...made a wee vlog as no spoons to type

Womans Hour Power List - Dr Sarah Campbell #WHGamechanger

Chuffed to bits I must say

The Radio Four Womans hour Power list is being compiled again, this year with a difference, instead of a list full of Mp's, the Queen and Journalists they want "Game changers" women from twitter campaigners to  women in thier communties that have bought about some kind of change.

I am very proud to have been part of the Spartacus campaign, most people would automatically think Kaliya Franklin and Sue marsh as being the architects of the successful "bedactivism" campaign that forced the government to make massive changes to their contentious Welfare reform Act 2012 as it went through parliament. Many got behind it, and I still remember the day the "Responsible Reform Report" was launched - the term I am Spartacus was coined and 1000's of tweets were tweeted.

The report was cited in speeches, so worried were the government they gave a lot of ground, it was proably the first time ordinary sick and disabled people using social media had done such a thing. Im not sure it will ever be repeated in such a way.

But

This is about game changers, they changed the game and yes they did, but the thing that enabled them to was the report - everything was built around that. and it wasnt written by Kali or Sue as they are the first to say its lead Author is someone else the real game changer in my humble opinion

Step forward blinking into the limelight

Doctor Sarah Campbell - like many in the campaign, is a chronically sick and disabled woman who before she had no choice but to stop working was a Mathematician & Researcher: The lead author and researcer of the Responsilbe Reform Report. 

Sarah is amazing, From her day bed number crunched, researched, wrote and pulled together the resport, many others helped and contributed but without her intial research the incredile campaign would have been a load of angry people shouting, the game changed with phorensic annlysis, factual, careful and undisputalbe work.

The government benches freaked, and conceded and backtracked and worried and very nearly gave us more than we dared hope. Everything we said would happen in the report has happened, its a mess and the government chose not to listen made empty promises to buy off peers and MPs - the chickens are coming home to roost.

But back to Sarah - Game Changers are not always attention seekers, or leaders or even well known but I am proud to call her a friend and without her work I dread to think how very very bad it would be and its already very bad.

Radio Four have got my tweet on thier website -so chuffed the title says it all Inspired suggestion

Womans Hours - Powerlist blog

She will probably kill me for this, but i hope secretly will have a little geeky smile - Its was never about recognition for her I know, but credit where credits due

Why? #justiceforLB - Updated

Connor Sparrowhawk was 18 - He had Epilepsy, was learning disabled and died in an NHS Unit on July 4th 2013 - I have followed his mums fight for justice for him and to get the truth known about how a fit and healthy young many could drown in a bath.

 
I didn’t know LB – but you only have to watch this video  LB - the ultimate Laughing Boy  His smile says so much. I cried watching it, It bought back my own story – when I “lost” my son for a long long time. But unlike LB – mine has a future. I cannot imagine the pain and loss his family feel. It must be hard enough losing a much loved child, but to know it was preventable is beyond me. 

I made a  promise last night – there will be justice for LB and all the other dudes hidden away in assessment units and homes – Im just one person but I hope you read the Report and join the #justiceforLB campaign on twitter or get involved via his mums blog my daft life – Its time we changed the way society views learning Disability and importantly the Health and Social Care system – it wont happen over night but it has to happen if LB is ever to truly get justice.

The report concluded the LBs death was preventable.

Why?

No matter how I try I come back to Why? 

Why do people with learning disabilities who at 17 years & 364 days need support to varying degrees, suddenly the next day become an “adult” so the Health and Social care world can effectively change the rules.

Where before the family are vital advocates in trying to get the best care and support for their child, become a nuisance and viewed as antagonistic and unduly controlling the day their child becomes 18.

Particularly in LBs case, where NO actual assessment was ever carried out by the Unit so they were effectively working blind – and chose not to engage with Sara (Lbs mum)

This is important as this to my Non Professional eye contributed towards LB’s death

Why? Do we as parents, patients, families, campaigners, interested people have no option but to be fluent in and use the jargon of Health & Social Care NON Language

Pathways

Capacity,

Challenging Behaviour

Personalisation

Independence

Personal Budgets

Transition

To name just a few of the jargon words that obscure and deflect the true reality of learning disabled people’s lives and their family’s realities. These words crop up throughout the Health and Social Care world.

Language matters, the assumption is that We as non professionals will learn the language Did  it contribute towards LB’s death?  I expect no one bothered to tell LB he was supposed to be fluent in it  and while others said he was Transitioning towards independence – maybe he was scared by all the changes and conversations about leaving school and didn’t understand what all the jargon meant or maybe he did and that increased his anxiety?

Why? Wasn’t LB’s family listened to, particularly his mum – when she tried to tell them about LB, his needs, likes, dislikes, his medical history, his epilepsy well basically everything about him.

This Contributed towards LB’s death!!!

I see it time and time again, hell ive been there and got the T-shirt the endless months of trying to get my son T help when he has his first mental health crisis, being dismissed, ignored and told repeatedly I was just “mum” I will bet my fabric stash (and it’s a big one) that LB and his family had little to do with the learning Disabled team because somewhere along the way “mum” was fed up, angry and disillusioned by the “system” and LB said ive had enough.  – the Unit was just another battle in a very long list of battle to make sure LB got the best care, that he was understood and seen as a human being

Why? wasn't LB given the respect and understanding he needed, the one person missing from the report really is LB where is he? I don’t mean the contradictory LB described – I mean the recognition he was only 18 by the staff and scared, confused and angry. 

The Unit failed to carry out a full assessment because LB didn't want to participate - non of the 17 trained staff, that included psychologists or senior managers revisited this? How can you get a sense of someone if you dont talk to them?

I have struggled with this particular WHY?

This report isnt just about the 4^th July – this is about the 15 weeks that lead up to it.

I don’t want to even explore this why –in part I don’t want to add more pain to LBs family.  I hope many people do ask this why, because its time we collectively stopped pretending to ourselves its ok and people are professional right?  Caring right?

Wrong

The "sauce indecent" – got to me on so many levels 

There are two versions of this incident - actually three but LBs version is not recorded, was he ever asked?

 3.10 CS attacked a member of staff on 2 May. CS had become agitated during the evening meal and lunged at a member of the nursing staff, ripping the individual’s shirt. Staff restrained CS and transferred him from the dining area to his room. CS initially did not respond to de-escalation techniques but gradually calmed down and staff left him in his room

If you read the above you might think LB was unpredictable and agressive, the member of staff was justified in thier response..but what if you read this bit first?

 5.44 An incident took place in the dining area on 2 May when CS was having dinner. He was putting a lot of sauce on his meal and S11 was joking with him about it. When S11 approached CS to see how much sauce he had used CS became agitated and rushed at S11, trying to hit him and ripped his shirt. CS was restrained. He was taken to his room where he remained restrained. He did not respond to de-escalation. He was given prn 0.5 lorazepam and left in his room. Ten-minute observations continued from 18.50 to 19.40. We found no record of observations until 20.30 and they then continue without a break. CS stayed in his bedroom until morning. His mother was told what had happened.

The staff member may have seen it as a ”joke” but so did the staff at Winterbourne View, A supposedly experienced member of the team well im guessing experienced they certainly explained all the restraint techniques well enough, yet didnt have enough **Autism awareness to know that LB like many learning disabled people struggle with social interaction, often don’t get “jokes” add in a stressful frightening experience is it any bloody wonder he lashed out.

The blatant lack of respect, told from a perspective that LB was unstable and aggressive, actually what I read was a scared dude who was being bullied. Yes Bullied and then restrained by the Bully – Care that isn’t care that is the biggest Why of all – how was a culture allowed to develop in a £3,500 a week well resourced, well staffed unit that said it was OK to pass the buck,  trivialize his epilepsy and  bully a vulnerable, scared learning disabled dude who had no power because the most important advocate he had wasn’t bloody listened to which  ultimately contributed to his death.

PS: I'm not the only one who has been moved to blog and ask Why? 
Have a read of a few other bloggers thoughts on the report and the appalling way LBs family have been treated.

Im not sure I could read all of them at once. They are both personal thoughts and brilliantly analytic, oh and heartbreaking, rage inducingwords - that unlike Southern Health get it

Mark Neary - "A Preventable death" Some questions
The SmallPlaces Preventable
George Julian discrepancies-blatant-misses-and-gaping-holes/
Making It up i-remember-his-jeans-were-wet

Funky Mangos Musings connor-sparrowhawk-death-by-indifferenc
Arbitary Constant On Southern Heath & connor sparrowhawks preventable death
People 1st England statement The preventable death of Connor Sparrowhawk
Indigo Joe Blogs let-it-not-be-about-lessons-learned
Building our nest together parents-not-spoken-to-enough
All big ideas start small some-thoughts-on-lb
A bit missing a-preventable-death-justiceforlb
Arbitary Constant congratulating-southern-health-and-fisking-them-and-true-leadership-justiceforlb/ 
Chris Hattons Blog /bystander-apath
Mental health and mental capacity law connor-sparrowhawk-easyread-version 



**I will add more if I see them

#Fibromyalgia & #M.E A Call to Action Update

A Lot can happen in 24 hours

Yesterday I wrote an angry scared post about the possibility that the World Health Organisation (WHO)
might reclassify both Fibromyalgia and M.E as psychological and behavioural disorders.

Events moved fast, I tweeted my outrage, it got retweeted lots of people asked WHO if it was true, they said NO its not they had no plans to change the classifications. I learnt a bit about an amazing website focusing on M.E. The site will no longer be updated, but will remain http://dxrevisionwatch.com/

I read two fantastic blogs written by women who like me who are concerned that both conditions are vulnerable to misinterpretation
.
M.E & Fibro could be reclassified by WHO (updated)
Fibro and M.E Misunderstood disorders

I had replies and conversations, today there is a basic plan of sorts so the Call to Action stands.

Why?
The WHO have said "There are not plans to reclassify either Fibromyalgia or M.E" that potentially means the classifications will remain incorrect, they do not reflect the latest research breakthroughs, and in the case of Fibro hasn't really changed since it was first classified in 1992!!

It matters because the classification ultimately influences:
How our health care treatment is determined,
How easy it is to get our pensions if they released early if we have to retire or get sacked due to ill health,
How big insurance payouts are if people have a whiplash type injury that isnt thier fault eg a car accident and go onto develop fibro
How the next generation of medics are trained
Crucially builds up funding and momentum for research

That is why its time to find our voice, many of us learnt just how powerful we are when ordinary people work together to push the establishment, I was proud to be part of the Spartacus Network Can we do something similar within the world health community? why not I say

A facebook group has been created to let anyone interested come together - I need a few people who will help me develop the campaign and tools. I'm hoping lots of people will use them and take part - we have to be our own advocates. FibroME ForAction Community (facebook group)

For now its on Facebook but who knows what it will be next week :) 

Basically the plan is to - Work to get the classification updated and changed to reflect the research.
Specifically:
WHO
NICE here in the UK.

This isnt a UK issue its a world issue, I know there is lots going on, many groups and charities are working to get research recognised. There are lots of individuals who are tired and worn out,  so maybe its time to be our own advocates and build on their work and develop our own. Its not a competition, I am just one chronically sick woman who isn't willing to wait for others to advocate for me.

I had no idea yesterday what I had started, but I feel a little less angry and a little more determined - Please Join Me 

A Call To Action #Fibromyalgia #M.E

I often meander along with this blog, writing what ever makes me want to tap the keys. Today I read something that made me both angry and terrified in equal measure.

NB: I have removed the link to the article that sparked this post - as it is now showing up as page not found. I dont know why. Despite this the blog stands - I have thought for a long time that its time to get both illnesses properly classified. 

In short the World Health Organisation classifies all known disorders and diseases. For a long time there has been a tussle between Research Psychiatrists and Research Scientists about the cause of both M.E and Fibromyalgia.

Are the illnesses really in our heads and we are just making it all up malingering and developing illness behaviours so people feel sorry for us in our depressive illness so convinced our we that our pain, fatigue and assorted neurological symptoms are real...as some notable and influential Research psychiatrists would have the world health community believe

Or

Are the illnesses really physical in nature - both neurological and physical malfunctions of the central and peripheral nervous system. That due to misfiring signals to the brain create very real symptoms that are not imagined but are as real as as any pain, fatigue and neurological. as the Research scientists are discovering the more they look into it.

let me say it clearly I'm not "mad" im ill and now im very very angry

The new classifications is in draft and we have until 2017 to speak with one voice to make sure that the science is heard, we are heard and once and for all we dispel the myth that we are all delusional layabouts that we just need to get off our backsides.

I am not for one minute saying we dont need support, or that psychological help has no part. But It is NOT the root cause - It is NOT a mental or behavioural disorder.

What can we do:

1. Research - pull it all together fully referenced in one place, including bloggers links etc
2. Lobby 
3. share our stories - our truths 
4. Galvanise the online community, our friends and loved ones to make a bloody big noise - that is coordinated and focused
5. leave a reply here if you are willing to help. Im just one scared angry voice - I cant do anything alone. Im not an academic, or even a very good writer. but surely if all the bloggers, academics, medics who believe in us and we make enough of a stink we might just finally break through and get what we deserve..

a true diagnosis and treatment that helps us manage these disabling illnesses  - even if the article is not as bad as it could be - there will be another scare, and if we dont do it then one day people like Professor Fink will win his argument that its really Bodily Distress Disorder (BDO) and the research will dry up, the breakthroughs end and once again we will be treated as people who make this shit up

As another well known campaigns slogan said so powerfully - Alone we whisper together we shout..lets shout but use evidence, reason and our stories to do it. xx


Thanks to spoonydoc for her great supportive blog http://loopys-rollingwiththepunches.blogspot.co.uk/2014/02/fibro-and-cfs-mental-disorders-who-must.html

Dont sweat the small stuff #Stress

waking up ferling like you have the worse "flu" ever,  your body aches everywhere and you feel drained of energy. Add in a whole host of neurological symptoms from numb fingers to blurred eye sight, you can imagine just how horrid it feels when you have in spoonie terms hit the wall.

That was me yesterday, my bodies reaction to stress. what could be so stressful in my life that bought this on?

A barny with my husband, one of those stupid nothing rows that blow over nothing and just as quickly are done with.  Except in my case its not done, my body doesnt handle stess well it triggers a "flight or fight" hormone response that in most people only occurs in really scary situations.

We've had a few weeks of stuff bubbling away that I thought I was coping with..I guess not

There is only one way to get back on my feet - Rest and plenty of it,  im in my jammies, snuggled up doing nothing.

if your newly diagnosed you might ask How Can I reduce the impact of stress?

I could say try and avoid stress..but seriously thats like saying never leave your bed again ever!!

i had to get real and honest with myself and look at what I find stressful and what I didnt,  I made a list.

what can I avoid and what I cant,  for instance I cannot manage or cope with telephone key pad options press 1 and all that.

But I can easily navigate my way around insursnce websites that drives my husband up the wall. you get the picture,  Its personal but important.

Many people swear by meditation for relaxing but personally its not for me, alough I will sometimes use a CD of thunder storms when I cant sleep.

what ever works for you try it, but if you are anxious and get wound up easily then im sorry your fibro is likely to be bad.

As they say dont sweat the small stuff,  LM and I rarely row or bicker we work hard to live in harmony because the effects on me are horrible. 

Seasonal Affective Disorder and Me

Seasonal Affective Disorder and Me

Now the Sun has gone,  

I’ve felt your presence, stalking my thoughts

Inching closer to me ready to flip the switch

From light to dark, as you suck the joy

Leaving me with tears and bleakness

There is no escaping you, as the nights draw in

You come tip toeing into my mind like an unwanted guest

Now I feel S.A.D – Seasonal Affective Disorder

I have suffered since my teens, for many years I shrugged it off and didn’t see the link that every depressive episode has always without fail come in the winter, but I understand that now. I’m not officially diagnosed, but that is more about not having a decent GP who doesn't put everything down to having Fibro.

This morning I woke up tearful, sad and ready to hide from the world – yet on Thursday I had a lovely evening out where I felt perfectly fine. There is no trigger for the depressive feelings; I am the happiest I have ever been, my illness is what it is and I’m OK with it, my son is finally happy, and I have lots to look forward to.

But

Those familiar feelings are here and the only thing responsible for it is the winter; dark days trigger my brain into a depressive state. I will remain like this until April.

Just because I know it doesn’t mean I can’t do anything about it, but I also know the signs and know if I don’t act NOW – I will spiral down into a very bad place.

What are the signs of SAD?

There are a diverse range of symptoms of Seasonal Affective Disorder; many are associated with a feeling of general depression - which is why it is sometimes known as the 'Winter blues'. Below is a list of possible symptoms.
An example of SAD Symptoms include: 

• Lethargy, lacking in energy, unable to carry out a normal routine.
• Sleep problems, finding it hard to stay awake during the day, but having disturbed nights.
• Loss of libido, not interested in physical contact.
• Anxiety, inability to cope.
• Social problems, irritability, not wanting to see people.
• Depression, feelings of gloom and despondency for no apparent reason.
• Craving for carbohydrates and sweet foods, leading to weight gain.

It is always important to consult your doctor if you believe you have SAD as it may be another condition.  From the SAD charity

How I cope

I tell people; I’m honest with my husband and people close to me. He can’t fix me, but he is watchful and encouraging when I cannot be for myself.

I use my SAD light box, one hour a day helps take the edge off – it tricks my brain into thinking it is day light and gives me vitamin D.

I go to the doctor and I ask for anti-depressants. I cannot work my way through it, I don’t need talking therapy and I am not depressed in the sense of a life trigger this is a chemical imbalance in my brain and I need help until the Spring.

I am kind to myself and use mindfulness to manage the thought and feelings as best I can.

I write. I know with a combination of a deterioration of my illness – winter’s crap for spoonies + SAD-I have six months to get through. I know I will come out the other end, but it’s hard, really hard sometimes. 

Today I have friends coming to visit, I really want to see them - but I also want to curl up in a ball in bed with the duvet over my head. LM is being his usual amazing self, he is sorting the house ready for their visit and making things happen while I blog on here, gather my thoughts and try to function enough until I can see my GP. 

I wish I had words to really describe it but I can’t beyond yesterday I lived my life in technicolour, today it is black and white. 

Unitended Policy Consequences #DWP #ESA

Lets face it, the DWP have made some dumb ass decisions of late and have more unintended policy consequences than I've had hot dinners. The latest is a corker and the only people benefiting from it I expect will be payday lenders.

If you were on sickness benefits and managed to get back to work, you could get £40 a week for 52 weeks as a little sweetener and it would help tide you over til payday. Ended 1st October 2013

Everyone going back to work could also get a £100 job grant for things like bus fairs etc, things that cost money while you wait for pay day. Appears to have been discontinued

** more if you were a couple I think 

In their wisdom the government decided to do away with both these things - falling back on the deluded position that there is other help available.

Working Tax Credits - yay but only if you are over 25 or have children. If your are like my Son, who is 20 and living with family, you get nothing.

You can get working tax credit if under 25 but only if you get DLA (or PIP)

4 weeks run on for housing and council tax benefit - but if like my son you live with family you get nothing.

Final money on ESA - I thought benefits were paid 1 week behind and 1 in front so he would get money on Wednesday but no it stops as of today.

So my son is finally well enough to go get a job. He really wants a job and has accepted a 20 hour a week job at minimum wage = £110 a week for 20 hours at £5.55 a hour, hardly loads.

He has to wait four weeks for his wages, his mobile phone bill etc go out on Wednesday. He lives with his granny who is a pensioner and cannot afford to keep him on fresh air so his bed and board at £80 needs paying. He has to get to work and all of this adds up. If he didn't have us, and we aren't exactly flush it's the wrong end of the month meaning we will go overdrawn to cover him, where would he go for help????

The only option I can see is a pay day lender, crisis loans are almost impossible to get, a budgeting loan is still a debt and his work programme provider, a disability charity by the way, are now happy to wash their hands of him except for the odd phone call. They actually told him about the back to work credit that ended on the 1st October.

I find it stunning that they didn't know and while I'm on a bit of a rant about them, it would have been nice if they had told him its actually a Christmas only job for six weeks and he only has a slight chance of being taken on permanently..setting him up to fail maybe.
I dread it if he is let go after Christmas, knowing he will have no option but to claim JSA and we could end up back where he was 12 months ago - on the verge of a nervous breakdown with his MH in tatters..

So all in all how is this encouraging people back to work when you pull the financial rug from under them immediately - leaving them destitute because that's what having no access to finances means.
Of all the stupid policy decisions this ranks well up there as a corker.

Please share because i bet like me, you might be more than a little surprised...

Flare up plan #fibromyalgia #spoonie

Its cold, damp and the clocks are about to go back. That means only one thing, I need to get my head into winter mode and allow myself longer to recoup energy and try to make sure what little i have is used for things i want to do and not wasted.

I have no amazing tips or wisdom, its really down to planning ahead a little.

Some givens:

-I will have a flare up.
-I will spend more time either in bed or my recliner chair.
-I will have more pain and less energy.
-I will spend more time at home and less out gallivanting.
-I know 100% I will get through it.

That might seem defeatist but it's not meant to be, this is my fifth winter, the first three were spent trying to carry on as usual and it resulted in ever increasing relapses and I don't fancy another one.

Things that make my life easier:

Lotions, Potions and pills
 If you haven't already, book an appointment with your GP and ask for at least two months worth of meds in case you can't get out - failing that make sure you are registered with your local pharmacy and get them to collect and deliver meds.

Stock up on a few things that make a different my personal list includes:
-Deep Heat
-Freeze gel
-Multi vitamins, especially B1 and Vit D
-Tiger balm - I find a little bit at the base of my head can help
-Extra medication


Upstairs, Downstairs (unless you live on 1 floor then its in 2 rooms)
 I'm either in bed or on my recliner chair when I'm at home - regardless of where I spend time, I make sure things are to hand as having to go up and down stairs or room to room just takes energy I don't have. So I have two duplicate boxes of everything- I keep one in my bedroom and one in the living room.

-Tablets etc - I have a pencil case with my meds in, I just make sure I have one in each box
-Bottle of water
-Cardigan/wrap/bed jacket of choice
-Something to read - mag, book, kindle, what ever
-Water spritzer for those hot flush moments
-Boiled sweets - I find it helps with a constant dry mouth sensation from the meds
-Notebook and felt tips
-Hankies

You can put what ever you want in it, but having things handy that are always there is great if you wake up and know it's a bad day and don't have to worry about trying to gather things together.

Do you think I'm sexy...
Getting dressed. I found long ago that the more lax I was about getting washed and  "dressed" the more it affected my mood and very quickly created a cycle which was very hard to break. I don't like the idea of giving up and reject the notion when it comes to positive choices like using aids etc but in this instance it's very true. The excellent fly lady website says get dressed to your shoes every day. The idea is simple, if you get dressed and ready you mentally prepare for action.

To adapt this for a spoonie day where you might want to be ready for action but paring it down and recognising this might be a flare up kind of day.

Wet wipes - yep I hold my hand up and say there are days when the mere thought of a shower is too much, even with carers. But if I can I have a proper wash.

Dry shampoo - see above but it does at least give you a sense of looking passable.
I don't wear makeup much so it's no biggie but I do try and moisturise.

Getting dressed, some days that's a big fat no but I own some lovely PJ's and Jogging type outfits, the comfy ones. Comfy knickers and those soft no wire bra things. Even if all else fails and it's a wet wipe kinda day - changing out of what ever I slept in into some nice jim jams/jogging stuff makes me feel better and reminds me to make that effort and be ready for action.

Snacking V real food
Its so easy to live on toast, and cereals when you feel crap - I know I've done too much of it this week, last week of term and me being off colour was never going to end well. But back to planning ahead even if you have zero cash having some basic tinned stuff in is better than toast.

Flasks - when I lived alone I filled a flask with hot water and added cuppa soup, tea bags and milk cartons (the little things you get from cafe's) to my box of tricks so at least I had something nutritious, taking meds on a totally empty stomach is grim. Plus i only needed to get up once.

I will get through it memory box
When days stretch into weeks it's really easy to think you will never get back on your feet, the flare up will become permanent and the little rays of sunshine are gone forever. Even if 99% of the time is hard, you still need hope it will get easier at some point or at least less bad.

our amazing anniversay trip to a posh resturant

I make sure I have pictures of good times around, videos I can watch and smile of good days. I keep in touch with people via the Internet and I love getting letters. I must ask this year for friends to send me letters, it beats the brown envelopes.
Plans, I love making plans big or small and it makes me happy.
I love motivational quotes and just being open to the fact I can do this helps.

Other stuff that makes me happy
Kindle
Laptop
Phone
Sewing stuff
China tea cup and saucer
Posh hand cream
Open windows and curtains
Stretches
Wobble walks
DVD collection of Sherlock Holmes
Miss read Books
Phone calls

One tidy space
I'm a bit of a clutter bug and not a naturally tidy person, but I do try hard to keep at least the living room tidy. When you live virtually in one room making it as nice and bright as you can helps oh and open the damn curtains, natural light helps.

This blog post has gone on for long enough, if you are newly diagnosed, or still struggling with boom and bust, it's not easy I know. Be kind to you, and while pacing is commonly used - planning isn't. I find I can manage more, feel better about me and generally cope when I plan ahead just a little bit and forgive myself when i don't. This list seems huge and when you feel crap, it's overwhelming but if you do one thing at a time you will quickly have your own plan, this just happens to be mine.

Please do add your tips and ideas - I'm sure i haven't thought of everything and it's always good to hear other people's stories...

Other people's tips and ideas...

-Travel kettle 
-Tray with hot drink making things and snack box
-Ipod with fave music
-Talking books *free from libraries
-At home library service *they will bring things to you and its a nice way to see people.
-Teasmaid - I'm very tempted by one I must say
-Lots of pillows *pretty ones
-Pretty bed linen/throws/cushions
-Mobile beautician/hairdresser 
-Skype - you don't need to do video chats but it's free and easier than phones

***and if you are reading this and are less housebound but know someone who is, then do send them a card or letter with newsy gossipy stuff in it or even a saw this and thought of you type thing. It really really does make a huge difference. 

I will add more as people send me them.
 

Conversation with a #spoonie Vlog

I've had a rough day and I know I've been skating on thin ice again. When you have Fibro it's like dancing the tango with a shadow on a knife edge; there is always the danger you will over step and fall off. I'm not sure I know anyone with it that doesn't sometimes slip up. The trick I've finally learned is to STOP!! when you get all the warning signs, pushing on can only lead in one direction; relapse.

Yes I know I don't exactly look attractive but fibro isn't always attractive...My husband decided to have a conversation with me :)

I love that I have his support to do what I do, lots of the time I look well and sometimes I look exactly as I feel...

Looked after but not cared about #SocialCare

I've tried, God knows I've tried to truly express my distress, anxiety and shame at needing care and accepting that I needed it. I shouldn't feel shame or guilt, surely it's just a case of accepting I need some extra help, but I do feel it - right to my bones.

I feel ashamed about what others think of me, after all I look well don't I. Ashamed I reached a point where the simple task of trying to get myself clean and dressed in a daily basis was leaving me so exhausted and broken I couldn't manage anything else and I was beginning to avoid doing it, spiraling down into a cycle of spending days in my jim jams and not going out and my husband having to help me and getting upset as I became more and more distressed. Shame is not a good feeling to have.

That knot of anxiety I try to suppress every time I open my door on care days to see if it's a carer I know or yet another stranger - Ive blogged before about it, but I tried to make light of it. I'm a size 22, I'm not very body confident and I loathe having to get naked in front of someone that isn't my husband.  A cruel voice in my head chips away about what they think of me piling on my shame; not only am I disabled but I'm a fat disabled too. I cover my embarrassment by being chatty and lighthearted covering up my fears and frailties - see look I'm OK really, but I'm not and the absurdity cannot be ignored.

The decisions made by the care agency, perpetuate the sense that I'm not important. They rota staff on back to back calls, safe in the knowledge they can use the "oh but we are allowed a 30 minute leeway" to cover the fact they allow no travel time between clients. Visits are timed to the minute with barely time to feel like I'm cared for, the staff are lovely and do their best but by the time I'm washed & dressed there is no 5 minute chat with a cuppa - it's write in the book and off to the next client who's been waiting 15 minutes already.

"Assisted with shower, dried hair, helped to dress, had a chat" sums up my care.

Poor communication, never knowing who will come or if the times will change or even if they will know my name if I have been added at the last minute - I know my surname is a mouth full but my name is Beth even that would do.

At first it was OK I have to say, I had the same 2 carers week in week out for a few months but recently its begun to change and I have gone from not really wanting it to this sense of shame that reduces tough as old boots me to a sobbing mess.

Having care shines a light on my darkest fears and truths, the things I try so hard to play down despite what others may think. My shame is a well told story in my life and one I try so hard to re frame, I never asked to get ill and no matter how much I kid myself this is just my new normal it's not.

It's all done nicely but scratch the surface just read this blog Lucy in bed blog: SS Review or this one my daft life or this one her name was Gloria I know I'm not the only one to know the truth. Care is not how you might imagine it to be it's become about process,systems, contracts and decision makers hiding behind their rules and procedures and people like me caught in the it's "My Care my Choice" are left demoralised and just a little bit sadder that we are not truly cared for, we are just a name on someone's list.

If we truly want to change things then we must change the way we view carers, give them better pay, better hours and the recognition they deserve. Only then will be begin to address the system failure to care. 

The next big thing is integration person-centred Health and Social Care but how can the system really change when the companies tendering for contracts, commissioners and policy makers continue to say the words but fail to act.

After Thought:

It occurred to me after I pressed publish - I also see another side of Social Care - in addition to the agency care paid for directly by my council I also have direct payments. This pays for my fantastic PA - her role is to support me to access the world, she helps with paper work, supports my role as chair of my local Healthwatch, baking and sewing she basically helps me be independent and do things I enjoy. 

I love that my council has supported this but it also shows in stark contrast my experience of personal care as outlined above. It was impossible to find someone for 1.5 hours of support which means I rely on agency staff.  

Im off to the Tory Conference please share your #CareStories #CareIdeas

Finally I have some time to write this - it's been a busy few months.

I am off to the Tory conference next week as part of the Leonard Cheshire Access all Areas scheme. Putting personal political feeling aside I'm both excited to go away, I love adventures and new experiences, and full of trepidation as I know I will be exhausted and it won't be easy changing minds or even opening them up.


I have chosen to focus on Social Care only - other amazing women Kali Franklyn and Steff Bensted are focusing on Welfare reform.

So why Social Care? In part the timing is good as the Care & Support Bill is working its way through parliament at the moment - it goes to the commons in mid October.
You can read some fact sheet here: Fact sheets

If you receive social care or think you need it this bill is massively important. I'm focusing on three things:

1. Lowering the proposed National threshold from Substantial/Critical to Moderate. Currently every single council with a social care department can decide what level to set its threshold at - threshold being the line you need to cross to get care. Many are setting the bar so high its a council of last resort.

The national threshold would mean all councils have to use the same criteria at the same level - so far so good, but it's still too high.
Im arguing that if we have a moderate needs national threshold it will: 

-Save money in the long run as many will need small awards often less than £10K a year and can maintain their independence at that so they don't fall into boom and bust cycles of ever more expensive care needs.

-Particularly for people with mental ill health a small ongoing package of support could mean the difference between coping and not in fact for some may lead to recovery, rather than the ever present fear of falling off the cliff edge - I'm talking three hours a week to make sure shopping is done, paper work sorted etc. Not even the level of "true independent living".

-Be an investment in working aged disabled people that would enable them to make choices about how they lived their life from volunteering, studying, working, bringing up kids what ever - if they are unable to get much needed support then all those aspirations are just that aspirations - Yes if people had moderate support the different to their lives and that of loved ones would be massive. Let's not forget unpaid carers in here.

I could go on but you get the picture I'm sure - so please reply below and share your Care Ideas - If you have tried and failed to get care due to thresholds being too high, what would a small award of say 10 hours a week of enable you to do? What difference would it make?

My second thing to talk to people about is portability of care: Something Baroness Jane campbell has lobbied hard for - Basically if like me you might want to move but have finally sorted a fairly OK package of care and support the idea of moving even to the next town a pretty horrific idea because it means:

1. A new assessment and you might lose all the current support because of different rules see my first argument. 
2. The transition from one place to another is bound to fail, not get sorted in time, be a nightmare or all three and you might then lose the great new job, not get your house, miss deadline for school all sorts of things you don't think about if you don't need care.

So the portability of care idea could be guaranteed:

-You keep same level of care paid for by authority you were in before your move for 3 months until new assessment can be done.

I totally agree with Jane on this and while she withdrew her amendment - it is something we need.

What opportunities have you turned down because you feared losing the support you already have, would not be offered somewhere else, or if you did move whats been your experience?

I won't have long with anyone - I want to change the narrative to talk about social care as an investment in people, how working age disabled people should not be lumped in with older people, who let's face it have very different needs. I'm not taking away from those needs, simply recognising as a 43 year old woman I have different needs. 

Lastly and it's very personal I blogged about it recently - dignity in care, how investment in social care goes beyond the person, it's about investment in the massive industry. 

-Zero hour contracts

-Ever changing staff

-15 minute care visits

-Not paying for travel time 

-Little beyond statutory training for care workers

I could go on I have to pick and choose so again

Please share with me your Care stories, Your care ideas. The more personal I make the story the more impact it might have. I will also if I have time make some little postcards with some quotes on them and leave them around bars etc. 

Leave a comment for me on this blog and share it as widely as you can.

  
You can leave an anonymous comment or email me at bethk.morris@gmail.com

My "virtual" memory keepsake box

As summer turns to autumn, so does the time when spoons are low, adventures are rare, and spoons are counted in hours or even minutes. It's hard to hang on and think I will get through this and be well enough again to have a few adventures.

This isn't maudlin, it's a simple reality of life as a spoonie - its almost four years in now and while still unpredictable in nature - I have a slightly better handle on listening to my body. So this blog is a homage to my summer - a chance for me to create and store away a few memories to look back and and smile...

But first a dedication to LM - we have just celebrated our first wedding anniversary - was an amazing day, we went to a very posh Michelin Starred restaurant to celebrate with a little help from my wonderful sister & brother in law.

Our wedding day 2012

Every year since we got together we do a B loves P - kind of our reminding ourselves what's important about being together

the Traditional B luvs P

Besides the sea I'd say jumping the waves - more like hobbling through them :D, we had a fab couple of days in Suffolk.

Then we went camping - I was maybe a little ambitious about the amount of time i could manage, but was still lovely to be away, besides the almost wheeling into a canal incident it was all good :D. We ate too much, drank too much and played board games..bliss.

LM doing something with a pineapple

me discussing the finer points of life with a scarecrow

Dahlia's I just love them

LM & friends doing a cataolgue pose..my husband as ever does his own thing

and then it was home time and back to life..have loads of photo's, and a few more memories to go in my virtual keepsake box. I'm sitting here tonight thinking oh arse I'm out of spoons how did that happen I mean I only....

-did some healthwatch chairing stuff

-went out for our anniversary

-saw my son

-did a bit more healthwatch stuff

-and baked...

its not like i did much :D

Note to self spoons matter especially when the first sniff of autumn appears and it's time to slow it down and revert to normal spoonie life..good bye summer it was a blast.

Me and LM

It doesn't matter where you go in life, or what you do..Its who you have beside you

may your spoons be with you x

5 different Care workers on 5 different visits #Dignity

Imagine this, you open the door to a complete stranger, they say hello. Slightly bashful and coy, you invite them upstairs, explaining just how you like it as you go, slowly peeling off your pj's, the ones with the coffee stain and some unidentified yellow substance that might be vom. You look away coyly as they go to help you, brushing your skin with their rubber gloved hands..

Stuttering, you explain hair first, then you can do your front but can they do your back. This stranger you met such a few short minutes ago begins to wash your hair as you sit passively, trying desperately to find some inane small talk to get over the embarrassment you feel at having this stranger wash you because you can't.

This isn't some sexy stranger 50 shades of grey sex romp it's the reality for many people who, like me, have social services funded care.

The first time is always the worst but once you get to know them and they you, and if they are bright and chatty, you eventually get over the "oh God I'm naked and I don't know you" bit.

BUT

Imagine if every care visit is like the first time, that you don't always know who will come to your door, that like me you might have five different carers in five visits. Is this OK? Is this what care is?

I can't always verbally explain what I need, sometimes I feel so god awful, brain fogged and sore i don't want to have to explain, or have to tell yet another stranger about my illness or have them look at me and try to hide the obvious "but you don't look sick" thought as it crosses their mind.

We talk a lot about dignity and affording care,but when profit is put before care, when the Care coordinators forget there is a human being on the receiving end of their rota decisions, people like me have just another tiny bit of their humanity stripped away.

I mean would you want to get naked in front of a stranger and let them touch you intimately?

I accept i need it.
I accept someone has to help me.

But I don't accept that it should be OK and when I raise the issue with the agency I'm met with promises to change it. It should never be ok in the first place.

Good Social Care - Makes the difference

I have been a little absent over the last few months, in part it was heeding the red flags of depression but more recently it was having the chance to get out and live a little.

A few things came together at once for me, all positive and while im typing this at 7.45am - feeling like death warmed up, half dreading the thought of heading into London to attend a training session for an exciting venture later in September - The fact im even able to do this trip at all is significant for me.

After 3 very long years of learning to cope and progressively getting worse, I was assessed in February by my Adult Social Care department about needing some more support. LM is amazing and i wouldn't manage now without him, but working full time and doing 80% of the household chores and support me is a tall order.

I dont want it to be that way, but it is and we cope. My lovely social worker, listened, didnt judge and understood. This for someone with an invisible illness that is used to being dismissed, ignored and generally told get a grip your not that bad was a revelation.

I get 3 x half hour visits a week from lovely carers, the agency itself is a bit rubbish but the carers are fab. That little but of extra support has taken me from struggling to coping, leaving me a bit more puff to manage other things.

At my review, we talked about how much i wanted to volunteer and get out more, but knowing i couldn't commit to a regular thing - I just cant sustain that level of activity or be reliable enough, I talked about my hopes to be part of the New Local Healthwatch and make a difference but within my limited capabilities, and how i wanted to just go out sometimes - in short have a bit of a bit of an independent life.

Blow me if lovely social worker didnt say ok how about 5 hours a week, maybe more if you need them - for a PA (Personal assistant) to support you to do stuff. Wow :) Id heard all the horror stories of people struggling to get stuff - and had that moment of should i really accept it.

It took a while, but eventually I got my fantastic PA - Miss S, she is bright, adaptable, friendly and its just easy. She is booked to come with me today, so while im dreading it, i know I can do it because she will be there and make sure im ok.

having her means not only did I get involved in Health Watch, I was appointed as chair if my local one. They know Im sick, understand I cant always manage to be here there and everywhere, we do lots by email, its flexible and I can bring my skills and knowledge into play but in little bursts of stuff rather than push myself too hard.

Some stuff has had to be dropped for a while, ive taken a massive step back from actively campaigning - but rather than a national focus, its a local one - being chair means I am in a unique position to really challenge services, especially ones aimed at sick and disabled people, after all I know dam well how it feels to get bad care, to be dismissed and isolated.

The Social Care bill is winging its way through the Lords and Parliament, the 2 biggest things we need to ensure is right is eligibility and portability. In other words its a myth (I wish I had some stats) that all social care bills are for 10's of £££££ a year many are like mine less than £6000 and is the difference between living and existing.

We need to campaign hard to get the national eligibility criteria to be set at moderate not substantial needs - or many many 1000's of us will disappear back to the shadows.

Ita another fight in a big list of fights - If i could encourage you to do one thing get involved in your healthwatch its there to be the independent voice of the consumers of health and social care - it has some statutory powers to make a difference. if lots of us get in there and lobby and work at a local level, we could seriously make a difference and we might just end up with a Social Care system fit for purpose..ours not theirs. So much emphasis is on the elderly (thats ok) but working age disabled people like me need support too....Healthwatch is also about health services.

you can find your loacal Healthwatch via here http://www.healthwatch.co.uk/

Update:

I started this blog weeks ago - but like many things I got sidetracked and havent had chance to come back to this. The exciting training I was off to, was the Party Conference Training for activists - Im being supported by Leonard Cheshire to go to the Tory Conference and lobby on Social Care. I will blog soon about the specifics. 

ATOS convenient Fall guys for the DWP

For those who read my blog but don't know what a WCA is - its a work capability asessment, something carried out to assess a sick and disabled persons ability to function in a "work situation" it is a flawed test that has no resemblance to a real world situation at all.

The WCA is carried out by a private contractor called ATOS that in many ways quite rightly has come in for stick - as many of the reports they produce are badly written, flawed and are produced for the DWP decisions makers ( the people making the decision as your suitability for work or not)

Yesterday it was announced that ATOS were producing poor quality reports and the government had decided to bring in new providers. Twitter and other social media erupted with yay we have won, ATOS are terrible they are to blame for all the appeals, deaths etc
Guardian Article

Really are they?

ATOS have stuff to answer for BUT its the test that is flawed not the company carrying it out. we could have 20 new assessors but the test remains the same, the way the training is done remains the same the norms (or rules of thumb) remain the same. this is a classic DWP trick - ATOS are now the fall guys, so DWP say oh we will bring in new providers - MPS and the press say oh look government forced to listen - go away and i really hope im wrong - with the no money while you appeal clause & new providers - appeals go down gov says see it was all atos's fault meanwhile we are still screwed over with a flawed test. the real culprit here is DWP not atos

" ATOS practices are awful, but it is the DWP who devised WCA, its them who approve the LIMA system in which Atos HCP use to assess us with, and it is the product of the HCP and LIMA system that make the report grossly inaccurate. More so, the report only gives a snapshot of a person's condition, and I've seen a fair few to know how appalling they are, especially for people with fluctuating and complex conditions.. Atos, in theory don't make the final decision that is DWP Decision makers, it is the DWP who allows the DM to give credence to the HCP report above all other medical evidence.

It is interesting that Mark Hoban is announcing this a week after the debate of impact assessment in the commons, where he was blasted for not meeting with Labour MPs and not taking the damning reports of Atos practices seriously

The WCA is unfit for purpose, that's what needs to be changed/scrapped not to bring in other providers or make it more different more people to appeal"

S.Rogers - Volunteer Benefits Advisor (very knowledegle woman)

 you can read many blogs about this and to my mind the process needs to be sorted, it doesn't matter who carries out the assessment if the policy is badly designed it will still produce bad results.

we have a long way to go to get a fit for purpose Sickness/Disability Benefit(ESA)

1. The god awful idea of no money while you ask for a mandatory reconsideration of the decision will cause no end of problems and leave many destitute - the government have purposely set out to entrap people with the "oh you can claim JSA" while you are waiting- to claim JSA you have to sign a job seekers agreement that you are fit for work and seeking full time employment 
mandatory reconsideration factsheet: disability rights UK 

The government has refused to set a time period for the mandatory reconsideration - meaning it could take months - we are after all seeing appeals taking up to 12 months to be heard.

By pulling this stunt even with special conditions attached to a job seekers agreement it means people too sick to work will be forced to seek work, or face sanctions - if we think its a mess now wait for that one to kick in. Only when the decision has been reconsidered can someone be placed on the ESA basic rate of they decide to appeal after that.

2. The Harrington review recommendations need to be implemented in full

3. A real world test needs to be put in place not the nonsense of can you lift an empty cardboard box
go back to the drawing board - extend the length of time to get evidence from 4 weeks to 12. Place as much importance on medical, social care and other sources of info as a 20 minute asessment with a complete strangers who might know nothing about your condition.

4. Continue the pressure and dont think oh well ATOs are toast so we can all relax- The options for other providers are few and far between I can only think of 4

Capita
G4S
Serco
Health service*8

** As someone with a invisible illness derided, ignored, unsupported in the main by healthcare professionals who often think its all in my head -  this idea fills me with dread. I will come back to why another time. 

so its comes back to its not about who delivers the assessments - to be honest we could have a service run by disabled people and we would still have a flawed test - there is a saying follow the ball not the plyer. in this case the Ball is the test the player is ATOS. we are so focused on the player..we cant see that the ball will remain the same.

The DWP are banking on a reduction in appeals from October not because the test has improved but because only the most determind or people with partners or a little bit in savings will persisit with reconsiderations and appeals. The rest will have no option but to allow themselves to be entrapped** and claim JSA and face the music or be destitute - its not a choice id like to make.

**Im no legal eagle but is this even legal to sign something knowing it to be false???

Depression: Heeding the red flags..

I haven't blogged personally for a while,

In part because I have been doing a lot, and this has inevitably caused a bit of a crash - mentally more than physically. I always know when I feeling a little under pressure, or when I'm not coping with things when i start to take lots of things personally, or I get very emotional about stuff. The final red flag for me is when my eating gets out of control, not terribly but when I'm making bad food choices, and hiding the evidence then its a time to step back.

No one thing has set me off, and often with depression there is no one thing, when  you have lived with depression for as long as I have you get to know it. I simply have to trust that it will ebb and flow and and sometimes it dominates my life in a way i don't want it to. The moment my red flags go up, then I have to stop, retreat and regroup. Give myself permission to stop!

I have a few emails to send and work out what I can and cannot take on. One of those things for now is campaigning, I simply cannot manage it in the way i have been for 18 months almost non stop - Likewise twitter was beginning to be very toxic for me. Nothing anyone had done, but for me it was skewing my head space and i was out of kilter with it that i was making poor judgements. Time away with LM and my recognition over the last 2 weeks has meant that my depression is dominating me,  has allowed me to step back.

When the safety fuse blows I usually get destructive, but not so much this time other than going a little AWOL..I have been sewing, easy machine stitching but it has made me happy and allowed me some space to just do.Find a bit of balance and calm my brain down and go with the flow.

Im not sure i have got any more insights except I want to

• Stop pushing myself to find a sense of purpose and belonging - this is not new for me but has become more pronounced since getting sick
• Recognise the fear and a sense of loss - I try and live in a place of acceptance but if im brutally truthful I may never truly stay there - Im not sure anyone with  a chronic illness ever really reaches acceptance totally. 
• Have a plan - there are 3 things I really want to do - I want to incorporate them into my limited capacity and that needs some honesty. 
• Be a little less hard on myself

But the biggest one of all is to stop apologising for myself. That is probably my biggest work in progress.

This week is carers week - I say thank you to LM all the time but its a big shout out to him. 

I make many promises to myself, but for once im not going to, except one - to be kind to me.

I have many exciting things to look forward to, from a volunteer role with a health and social care organisation to being part of team looking at undressing disability.

Next week i have a few emails to send, and to sor a few things out so I can manage a better balance.

Things that will help me

• Finding a PA to support me to volunteer
• Attending the pain management assessment and being honest in it
• *Accessing some talking therapy again
• Do some more sewing
• Have some times away in the summer camping with LM
• Have a road trip with one of my best friends

*I will have to go private for the therapy but think I need a talking space again.

Fibro impacts my life in every way, and can make the depression worse..however how I handle it is the difference between landing in a very very bad place and unravelling or stopping & heeding the red flags..

Ringing in my ears...Tinatus & Fibromyalgia

A little known symptom of Fibromyalgia is Tinatus (ringing in your ears) Ive had tinatus for close to 20 years from mild backlground noise to distracting and in my face!

So why am I calling it a symptom if I already had it, simply because its got worse and more persistent since I got Fibro. In my experience Fibro amplifies other pre-exisisting conditions if you have any. 

We know that as a suspected Auto-Immune system that I wrote about Lets look for a cure  it stands to reason that anything you had before will be exacerbated by fibro because of the way it distorts signals to the brain instead of interupting them, they turn the volume up if you like. So what was mild before over time becomes louder and louder.

NHS choices - symptoms Fibromyalgia

Tinatus - Symptoms

Im typing today with the high pitch squeal in both my ears this morning that is distracting to say the least, I have the TV on the same settings as ever - but today its isn't sending the Tinatus to the background. I manage usually with enough day to day noise I can "ignore" it.

Tinatus is a little understood or recognised condition. Imagine never ever ever being able to lie down in silence, lying in the sunshine, looking at the clouds, miles from anywhere and relaxing in the silence..wow Id love that except for me the ever present high pitched squeal kicks in.

I have learned to ignore it and never went to the docs thinking nothing can be done and no point in bothering, self management is often only thing you can do. I always have background noise on the radio very often,  mostly Radio 4 simply because I find talking radio allows my brain to tune in - where the unpredictability of music stations where high pitched songs can trigger a sensation so painful I have to turn it off.

What can help?

Medication CDs etc at bed time - when its really bad and i cant switch my brain off because of the noise - a talking mediation CD, or sound of the rain in my case can help tune my brain into the noise and i drift off.

Not focusing on it - when its mild and im not having an attack - yes titnuatus can and does ebb and flow having background noise on again helps to calm it down. When its bad like today I just try and get through it as best I can.

Got any tips? 
please leave comments or pop me a message if you ahve any good ideas for coping or reducing it because its an abolute swine  

Most of all dont ignore it and if it persisits for more than a few days go see your doctor

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