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.