Christmas Crackers

I hate the festive season, all of it, everything, all except Boxing Day dinner. In our family, Boxing Day is the one well spend together with a lunch of leftovers: turkey; bubble & squeak; ham; homemade coleslaw; roast potatoes; roast parsnips; stuffing; pigs in blankets; bread sauce, cranberry sauce - all my favourites, and for afters there's homemade sherry trifle, some kind of gateaux (this year a Bailey's Chocolate Log), custard; both hot and cold, cream; both thick and single, and yummy brandy butter. We eat, we talk, we laugh for probably the one day of the whole year we're together - and not bickering! 

For many years the same crackers have sat on the table, ignored because we're all rabbiting too much, but for some reason this year we cracked them open. The jokes were real corny (as they always are), but the idea of having conversation starters was kinda cool, and the proverb (at the bottom) was the only thing out of a Christmas Cracker worth remembering. Enjoy! 

What's orange and sounds like a parrot?
A carrot

Conversation Starter: What ice cream flavour best describes your personality?

What do you call a deer with a bad eye?
A bad idea

Conversation Starter: If you were an animal what would you be and why?

Why did the golfer bring two pairs of trousers to the game?
In case he got a hole in one

What do you call a cheese that isn't yours?
Nacho cheese

Proverb: Don't bargain for fish that are still in the water

Why do bicycles fall over?
Because they are two tyred

Conversation Starter: If you could travel anywhere in the world, where would you go and why?

How did the farmer fix his jeans?
With a cabbage patch

Conversation Starter: As a child who was your favourite superhero and why?

Proverb: A bird does not sing because it has an answer, it sings because it has a song 

Master Symptom List for CFS, FMS, CMP & Lyme Disease

Master Symptom List for CFS, FMS, CMP & Lyme Disease

By Sherry Hart Scoggins, Crispulo Hernansanz and Meg Neubauer in Fibromyalgia Awareness!

AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE

· Abnormal sensitivity to hot or cold

· Allergies (nasal, other; new, increased or worsening)

· Canker sores (frequent)

· Chills and/or shakes when hungry (may occur instead of feeling hungry)

· Cold hands and feet

· Feeling hot or cold often

· Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), chills, extreme fatigue after minimal exertion

· Hair loss (alopecia)

· Herpes simplex or shingles rash

· Increased susceptibility to infections

· Low-grade fevers

· Low blood pressure (below 110/70)

· Low body temperature (below 97.5)

· Lymph nodes painful, swollen (in neck; under arms)

· Night sweats (not related to menopause or fever)

· Orthostatic Intolerance (neurally mediated hypotension)

· Reactive hypoglycemia and insulin resistance

· Thirst, increased

· Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature and body temperature; low body temperature (below 97.6 F / 36.4 C)

· Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto's thyroiditis)

CARDIOPULMONARY/RESPIRATORY/CIRCULATORY

· Cardiac abnormalities (mitral valve prolapse; myocarditis; tachycardia; palpitations; dysrhythmia)

· Cough

· Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion

· Heart attack

· Heart palpitations

· Heart pounds so hard it shakes body, bed

· Pulse skips

· Serious rhythm disturbances of heart

· Sighing, frequent, not related to mental/emotional state

· Stroke

· Vasculitis

CENTRAL NERVOUS SYSTEM/NEUROLOGICAL/NEUROPATHIC/OTOLOGIC

· Abnormal CAT, MRI and/or SPECT scans

· Alcohol intolerance

· Aseptic meningitis

· "Brainfog"; inability to think clearly

· Difficulty moving tongue to speak

· Diminished or absent reflexes

· Fainting or blackouts; feeling like you might faint

· Headaches (frequent, severe, recurring)

· Hearing fluctuations (sounds fade then return)

· Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)

· Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)

· Libido (decreased)

· Light-headedness, feeling spaced-out

· Migraine headaches

· Muscle twitching

· Noise intolerance

· Paralysis or severe weakness of limb

· Paresthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities

· Photosensitivity

· Radiculitis

· Seizures; seizure-like episodes

· Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)

· Severe muscle weakness

· Syncope (fainting)

· Tinnitus (ringing/noises in one or both ears)

· Touch or weight of clothing on or against body causes discomfort or pain

· Tremors, trembling

COGNITIVE FUNCTION

· Becoming lost in familiar locations when driving

· Difficulty with simple calculations (e.g., balancing chequebook)

· Difficulty expressing ideas in words

· Difficulty moving your mouth to speak

· Difficulty making decisions

· Difficulty following directions while driving

· Difficulty remembering names of objects

· Difficulty remembering names of people

· Difficulty recognising faces

· Difficulty following simple written instructions

· Difficulty following complicated written instructions

· Difficulty following simple oral (spoken) instructions

· Difficulty following complicated oral (spoken) instructions

· Difficulty integrating information (putting ideas together to form a complete picture or concept)

· Difficulty putting tasks or things in proper sequence

· Difficulty paying attention

· Difficulty following a conversation when background noise is present

· Difficulty making and/or retrieving memories (long/short-term memory deficits)

· Difficulty understanding what you read

· Easily distracted during a task

· Feeling too disoriented to drive

· Forgetting how to do routine things

· Forgetting the use of common objects (such as, what to do with the shampoo when you are standing in the shower)

· Forgetting how to get to familiar places

· Impaired ability to concentrate

· Losing your train of thought in the middle of a sentence

· Losing track in the middle of a task (remembering what to do next)

· Poor judgment

· Switching left and right

· Slowed and/or slurred speech

· Stuttering; stammering

· Transposition (reversal) of numbers, words and/or letters when you speak and/or speak

· Word-finding difficulty

· Using the wrong word

DIGESTIVE/HEPATIC

· Bloating; intestinal gas

· Decreased appetite

· Digestive chemicals (acid, enzymes) reduced or absent

· Oesophagal reflux; heartburn

· Frequent constipation

· Frequent diarrhoea

· Food cravings (especially carbohydrates, sweets)

· Food/Substance intolerance

· IBS

· Liver function impaired; mild abnormalities

· Increased appetite

· Nausea

· Spleen tender or enlarged

· Stomach ache, cramps

· Vomiting

· Weight gain or loss

EQUILIBRIUM/PERCEPTION

· Bite your cheeks or tongue frequently

· Bump into things frequently

· Difficulty discriminating printed matter despite proper vision correction

· Distances (difficulty judging when driving; when putting things down on surfaces)

· Dizziness or vertigo

· Dropping things frequently

· Dysequilibrium (balance problems)

· Impaired coordination

· Loss of balance when standing with eyes closed

· Perception (not quite seeing what you are looking at)

· Some patterns (stripes, checks) cause dizziness

· Spatial disorientation

· Staggering gait (clumsy walking)

· Words on printed page appear to jump off page or disappear when staring at them

EYES/VISION

· Acuity changes not related to prescription changes

· Blind spots

· Blurred vision

· Conjunctivitis

· Diminished visual acuity in absence of actual vision change

· Drooping eyelid

· Double vision

· Eye pain

· Flashes of light perceived peripherally

· Optic neuritis or atrophy

· Oscillopsia (image jiggles)

· Prescription changes more frequently

· Pressure sensation behind eyes

· Red and/or tearing eyes

· Retinal damage

· Slowed accommodation (switching focus from far to near, near to far)

· Spots or floaters not related to migraines

· Swelling around eyes

· Uveitis and/or iritis

· Wandering or lazy eye

HEAD/NECK/MOUTH

· Bell's palsy (facial paralysis, one or both sides)

· Bruxism (grinding/clenching teeth)

· Canker sores

· Dizziness when you turn your head or move

· Dry chronic cough

· Dry eyes, nose and mouth (sicca syndrome)

· Pain in ears, palate, gums

· Periodontal disease

· Prickling pain along skin of jaw

· Problems swallowing, chewing

· Runny nose in absence of cold, allergies

· Sinus infections

· Sore spot on the top of your head

· Temporomandibular Joint Syndrome (TMJ)

· Unexplained toothaches

· Xerostomia (dry mouth)

MUSCULOSKELETAL

· Arthritic pain that migrates from joint to joint

· Carpal tunnel syndrome

· Frozen shoulder

· Intermittent joint swelling

· Joint aches (arthralgia)

· Joint pain, without redness or swelling

· Loss of tone

· "Lumpy, bumpy" long muscles

· Morning stiffness

· Muscle aches (myalgia)

· Muscle pain, stiffness, weakness

· Piriform muscle syndrome

· Reduced range of motion

· Stiff neck

· Writing causes pain in hand, arm shoulder

PAIN SYMPTOMS

· Abdominal pain

· *Chest pain*

· Generalised pain

· Joint Pain

· Pain that migrates from joint to joint

· Pain/stiffness at C1-C2 (top two vertebrae)

· Shooting or stabbing pains

· Painful tender points (FMS: 11 out of 18 tender points)

PSYCHOLOGICAL SYMPTOMS/MOOD/EMOTIONS

· Abrupt/Unpredictable mood swings

· Anxiety or fear for no obvious reason

· Appetite increase/decrease

· Decreased self-esteem

· Depression or depressed mood

· Feeling helpless and/or hopeless

· Feeling worthless

· Frequent crying for no reason

· Helpless/Hopeless feelings

· Inability to enjoy previously enjoyed activities

· Irritability; over-reaction

· New phobias/irrational fears

· Panic attacks

· Personality changes (labile, irritable, anxious, confused, forgetful)

· Phobias (irrational fears)

· Rage attacks; anger outbursts for little or no reason

· Suicidal thoughts or suicide attempts

SENSITIVITIES

· Acute or abnormal reactions to medications

· Alteration in taste, smell, and/or hearing

· Chemicals (alcohol, medications; lower tolerance for)

· Food sensitivities

· Increased perception of and sensitivity to noise

· Light sensitivity

· Sensitivity to odours (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)

· NOISE sensitivities

· Hypervigilance

SKIN/NAILS

· Abnormal scarring

· Acrodermatitis Chronica Atrophician

· Blotchy or mottled skin

· Bruise easily

· Bruises may take longer to appear, and/or longer to fade

· Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)

· Dermographia (minor scratch pressure on skin leaves vivid red welts)

· Dry, itchy skin

· Easily scar

· Eczema or psoriasis

· Fragile nails

· Frequent skin irritations

· Lymphadenosis Benigna Cutis

· Nails that curve under or downward

· Overgrowing connective tissue (ingrown hair, adhesions, thickened/split cuticles, cysts, fibroids)

· Painful skin (abnormal/excessive pain when scratched or rubbed)

· "Paper" skin (feels fragile, tissue-thin when rubbed)

· Rashes on body, face

· Vertical ridges or beads in nails

SLEEP SYMPTOMS

· Abnormal brain activity in stage 4 sleep

· Altered sleep/wake patterns (alert/energetic late at night, sleepy during day

· Difficulty falling asleep

· Difficulty staying asleep (frequent and/or prolonged awakenings)

· Hypersomnia (excessive sleeping)

· Myoclonus (restless leg syndrome; occasional jerking of entire body)

· Nightmares (frequent, extremely vivid and/or disturbing)

· Unrefreshing/Non-restorative sleep

UROGENITAL/REPRODUCTIVE

· Decreased libido

· Discharge from breast or galactorrhea

· Endometriosis

· Frequent urination

· Incontinence

· Impotence

· Infant: premature; low birth weight; low muscle tone; failure to thrive

· Interstitial cystitis

· Miscarriage or stillbirth

· Painful intercourse

· Painful urination or bladder

· Pelvic and/or rectal pain

· Prostate pain

· Swollen testicles

· Other symptoms worsen before start of menstruation

· Worsening of PMS

OTHER

· Abnormal or other changes in sweating

· Activity level reduced to less than 50% of pre-onset level

· Burning sensation (internal or external)

· Changed voice

· Changes in sweat odour/body odour

· Delayed reaction to overactivity/exertion (onset 24-48 hours after exertion)

· Electromagnetic (EM) sensitivity (electrical storms, full moon, affect function of electrical devices)

· Fatigue, prolonged, disabling, made worse by exertion or stress

· Fibrocystic breasts

· "Galloping" cholesterol and triglycerides

· Hair loss (not related to age, hormones, diet, medication)

· Hands hurt excessively when put in cold water

· Handwriting changes, altering signature and/or other writing

· Hoarseness

· Painful, weak grasp that gives way/lets go

· Periods of concentrated thinking causes physical and mental exhaustion, increases pain

· Sore throat

· Swelling/Idiopathic oedema (fluid retention syndrome)

· Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel

· Symptoms change focus from time to time, like infection is moving through the body

· Thickened mucus secretions (nose, bowel, vaginal)

· Thickened "sleep" around eyes in mornings

· Very attractive to biting flies and mosquitoes

· Weight changes (usually gain)

Creative Writing 2: Gone

Bells joyfully tolled the hour as I reluctantly walk up the path towards Holy Cross Church, tugging at my stiff suit; the ridged collar choking me. My Mum gives me that look and I leave my clothes alone, following her wake in silence. The big red doors are flanked with mourners obediently dressed in black standing in silence; waiting. Family I haven’t seen in years, friends I didn’t know I had, here out of duty more than respect, all murmuring their mantra: ‘sorry for your loss’. Eventually we’re ushered in, the bright warmth of a beautiful summer’s day feeling in stark contrast to the cool gloom within. Smells of dust, old fabric and wood, mingled with the powerful fragrance of lilies, overwhelming my senses and making me nauseas. I focus on feet to block out what lies ahead. A tiled path of brick red diamond, worn to a polished finished through years of use, squeak under the soles of my shoes dispersing the thick silence. I don’t want to look up; to take in the scene, so I keep me concentration down as I take my seat - look anywhere by there! Dirty wooden planks made up the rest of the floor, marked and scared where pews had been moved and paint dripped during redecoration. Although it must have been a while ago as the white washed wall looked tired: scuffed and worn. Here and there are plaques in memory of those long since past: William Alfred Clark 1898-1980, Justice of the Peace, Churchwarden of this Parish; Revd David Bayford late Curate of this Parish who died Nov 28^th 1792 age 24 years and 4 month – why mention the 4 months? I try to image these people and how they lived, but I can’t seem to hold the thoughts. That smell! I can’t get over the smell! So musty, like an old persons home, making me want to sneeze. My legs are becoming numb and painful on the hard narrow wooden pew with its upright back. There’s a tatty cushion, but its padding is non-existent. I fidget to try and get more comfortable, but the wood raucously grates, disrupting the silence. I’m suddenly aware of eyes glaring at me, so I stop fidgeting, sit up straight and look forward for the first time. The vicar is already in full flow, but I’m not listening and the sound just echoes back out of my mind. There it is: polished wood and brass handles. Emotion immediately starts to well inside me I quickly look away again to stifle the throbbing in my chest. I look up to the high vaulted ceiling with its dark wood beams and deep red paintwork. To my surprise it seems to be littered with red and silver shiny balloons! There must be eight of more. I wondered what they were at first shining in the gloom – spot lights. No, they are definitely balloons. What occasion would have lead to balloons in a church? The whole place reeks of sombre formality: sit up straight and be quiet; best Sunday clothes; jacket and clean shoes. It’s hard for me to imagine laughter and frivolity sat here in the dusty gloom, especially now; especially today. I’m suddenly aware of everyone getting to their feet. The organist begins to play and voices start to sing in a monotone. A tug on my shoulder and slowly I rise too, glad to move my numb limbs, although now it’s harder to look anywhere else but ahead of me. I feel the grief rising in my stomach and swallow hard. I can’t cry. I won’t cry! I’m the man of the house now and men don’t cry! Desperately I tried to move my focus, concentrate on something else to remove myself from here and now. I notice a huge contrast in the decor around the alter, like great swathes of history had all been merged into one place: dark gothic like ornate carved wood, giving way to a teak 70s style balustrade and an ultra modern light wood sculptured table. Yet everywhere the fabric looks old and tired against the permanency of the wood: cushions faded from red to a warm orange; carpets worn to a dark shiny finish with constant traffic; a table cloth that was probably white now just looks creamy yellow with age, a lose thread hanging down. The hymn now over, everyone sits and I go back to concentrating on the floor; my shoes; my hands. I try to think of other things, but every thought is of the past – I can’t seem to escape it: a family picnic; fishing at the lake; being scolded for breaking the window with my ball. And in every memory he is there – my Dad. I miss him so much. I confront the coffin in front of me, veiled in foliage; the word DAD spelt out in white carnations hammers my anguish home. I can’t help it now. The tears start to roll down my cheeks like a monsoon filled river, my body convulsing as if in pain, I can’t seem to get my breath. I sniff hard to stop my nose running, adding to the mess of my face, and automatically go to wipe it with the back of my sleeve. A hankie appears in my view, held in a shaking hand, and I look to see my Mother’s face smile at me, her eyes glistening with tears. She puts her arm around me and draws me close to her.
‘It’ll be ok James, I promise.’ She whispered in my ear and, as I breathe her in and feel her warmth surrounding me, I know it will.

Creative Writing 1: Reminiscence

‘I was 16 and a year out of school when I started working there, so that must have been…1949; yes. Alfred Bass and Sons Ltd. I guess it was the same as any other grocers of the time. A double fronted store, although modest in size it looked grand from the outside, with the name painted in large gold capitals across the top boarding. The two windows were always plastered with the latest offers: 1/2lb butter 1 and 8; tea 1 and 6 a quarter; you know. There were none of these huge glaring supermarkets we have now, you see, and no getting things off the shelves yourself. Mr Bass served everyone from behind a substantial dark wooden counter; dark wood shelves across the expanse of the wall behind him held rows of products in large vats and jars, ready to be weighed out to the customer’s requirements.
We were still rationed – that continued until the mid 50s – but supplies were steadily easier to come by. Rationing had actually served Mr Bass well, as many customers needed to register with a grocer to get access to any of the rarer commodities. This had gained him many loyal customers, all of which we knew by name; even getting to know what their regular requirements were. Mr Bass was very attentive and made sure he held stock for the regulars.
Mrs McCleary was one of those. Always in on a Wednesday for her cup of brown sugar, ounce of marg and 1 ½ cups of flour needed to make a cake for the Women’s Guild meeting on a Friday afternoon. She had the rest of her groceries delivered on a Monday, but insisted in coming in personally for her cake ingredients. Mrs McCleary was a severe faced old lady, round and bustling; always with purpose. She lived alone in one of the old terrace cottages off Susan’s Road – her husband had died in the Great War and they’d never had children. I remember it was a sunny day in mid September; on the whole it had been an exceptionally warm and dry start to autumn so the leaves had not yet started to turn, nor were the mornings filled with the cold damp air of pending winter. I felt cheerful in the warm sunshine of dawn going about my deliveries that Monday morning; whistling a little tune to myself as I cycled on my way. At Mrs McCleary’s I was shocked when a tall, willowy brunette of about my age opened the door to me. Rather than being greeted by Mrs McCleary’s austere scrutiny, I was surprised to be gazing into green sparkling eyes, framed by apple cheeks and the biggest smile I think I’d ever seen. I can remember the day as if it were yesterday and still get that awkward blush when I think about it. I think I fell in love then and there. Her name was Betty and she was Mrs McCleary’s niece; staying for a while to help Mrs McCleary organise a large function the League of Health and Beauty were holding. We only managed to talk for a short while that morning before the booming voice of Mrs McCleary called Betty back to her chores.
In fact most of our meetings had to take place in secret to avoid Mrs McCleary’s disapproval – she was not at all happy that her niece be stepping out with a shop boy! Betty and I would often meet after my delivery rounds: she would excuse herself for fresh air and a little exercise, which Mrs McCleary wholly approved; while I would make every effort to finish my rounds as quick as possible, so not to be missed at the store. On Sundays we would arrange to meet after church and this was when we had the longest times together. We could talk for hours about nothing or about everything; walking across the fields just enjoying each other’s company. Later that autumn I even took Betty to a dance – well she went with friends to avoid repercussions from her aunt. However Betty was set to return home before Christmas and I thought I was to lose her for good. I wrote to her everyday and she responded – in fact I still have her letters in a shoe box in the attic; I could never bear to part with them.
Unlike Mrs McCleary, Betty’s parents were more forward thinking and glad for their daughter’s happiness. So Betty was allowed to return that spring to stay with her aunt and help with another function, but was also allowed to see me. I was thrilled! We went dancing, on picnics, for long walks, but most of all just enjoyed spending time together. In early June, when Betty once more had to return home, she asked that I joined her to meet her parents. I managed to gain some time off work and we travelled the hour or so by train to Eastbourne. I was terrified, but Mr and Mrs Palmer were very accommodating and kind. Mrs Palmer was nothing like her sister, neither in looks or personality. She was carefree and confident, like her daughter, with the same brown curls and huge smile. I rarely got to see Mr Palmer, as he had to work, but on Sunday’s, after church and before lunch, we often went fishing together and got on well. My own father had died in the war and my mother was kept busy with the huge brood she’d been left with, so it was wonderful to fit into this surrogate family; it felt like home from home. Unfortunately, and all too soon, I had to return home. Betty and I still wrote constantly, but it wasn’t until Christmas that I actually saw her again.
Mr and Mrs Palmer had invited me to stay for Christmas. As mother had her hands full and the shop was closed for the holidays I was free to accept their offer. It was wonderful to see Betty again and it is true that absence makes the heart grow fonder; it felt like we had never been apart. Christmas day was magical; a real family affair. We were joined by Mr Palmer’s sister and her two boys, Mr Palmer’s elderly mother and even Mrs McCleary. Later that afternoon I asked Mr Palmer if I could have a word in the parlour. I had decided to ask for Betty’s hand after returning from my last visit, but had kept it secret in order to save enough for a worthy ring. Alone with Mr Palmer my heart was racing, palms sweating, as I struggled to get the words out. I don’t think I’d been more terrified in my life! I needn’t have been because Mr Palmer just reached forward and gave me a huge hug, enquiring why it had taken so long for me to ask.
The wedding was planned for that spring; a simple affair in a small church near Gildredge Park. I decided to move to Eastbourne and Betty and I set up home close to her parents. We were together for 66 wonderful years, until Betty died of a stroke last autumn. I’m not unhappy that she has passed. I am happy for the time we had together and the memories I have.’

Motability - facts, figures and thoughts

Motability was formed as an independent charity with all party Parliamentary support in 1977. Since then, the Motability Scheme has supplied over 3.5 million vehicles to disabled people.

Motability Operations is now owned by Barclays, Lloyds, HSBC and Royal Bank of Scotland, and overseen by registered not-for-profit charity Motability. However, whilst the charitable side is not-for-profit the operations side does seem to be making money as in its annual report, the company boasted it is guaranteed an income stream with 'minimal credit risk' and in the year to September 2013 the company paid Mike Betts, head Motability Operations, bonuses totalling £911,915, as well as a £125,000 payment in lieu of pension; this was on top of his basic salary of £501,900.

Currently Motability has over 620,000 customers who have opted to use their higher rate mobility Disabled Living Allowance (DLA) in exchange for a new lease car, which includes insurance, breakdown cover and all maintenance.At the end of the lease, which is usually three years, the customer returns the car for resale by Motability Operations. In a statement Lord Sterling, Chairman, Motability Board of Governors, said 'the Scheme buys over 200,000 cars each year, accounting for some 10% of the UK new car market'. DLA is not means-tested or taxable, and is paid whether the disabled person is working or not.

However in April 2013, the Government introduced a new benefit – Personal Independence Payment (PIP) – which will gradually replace Disability Living Allowance (DLA) for disabled people aged between 16 and 64. Between October 2013 and 2018, the Department for Work and Pensions (DWP) will reassess some two million disabled people aged between 16 and 64, who currently receive DLA, for the new PIP benefit. Under PIP you only get the Enhanced Mobility Component if you are only able to move up to 20 metres aided or unaided. Previously, under Disability Living Allowance (DLA), the equivalent higher mobility award was given to those who could only manage to walk up to 50 metres. Because PIP is a new benefit with different criteria to DLA, many disabled people will not qualify for mobility support under PIP and as a consequence, they will no longer be eligible to use the Motability Scheme. Disability Rights UK has already highlighted that 150 to 200 are losing their Motability car each week! Motability has reported that, to date, 45% of scheme users who have been reassessed from DLA have lost their Motability cars, although, in a Parliamentary reply by Mike Penning, figures show that the success rate for PIP appeals has been steadily increasing and now stands at 47%!

The new vehicles on the Motability Scheme aren't purchased with taxpayers money and just given away to people, like some may like to think. They are leased through the Motability Scheme (at vast discounts from the manufacturers for bulk purchases, which will also probably be lost) to customers for three years at a rate of £57.45 a week (based on current DLA Higher Mobility rates), that's £8,962.20 over the 3 year period, after which they are returned and sold. Depending on the type of vehicle and adaptations required the customer also has to pay an amount up front that can range from nothing to many, many £1000s. Then at the end of the three years lease the customer gets any adaptations back, to put on a new car, and a £250 bonus IF the vehicle is returned in a 'good' condition. Should they wish to have another lease car any advanced payment has to be found by them - and if you are purely reliant on benefits that is no easy task. It is, of course, the choice of the benefit recipient if they join the scheme, spend the money on other things, or hide it under their mattress, however I am sure the scheme makes economic sense, otherwise Barclays, Lloyds, HSBC and Royal Bank of Scotland would not be involved and there would have been £1m to pay the boss in bonuses - basically the scheme had to have been making money.

Those are the facts and figures, so now my thoughts.

According to the government and media we need to cut the deficit (austerity, austerity!) and to address some of this debt they have decided to penalise those who are ill and disabled. Basically they believe we all can't be as ill/disabled as we say we are, so have unreasonably moved the goalposts and are reassessing us all to prove we are liars and scroungers; even though this is being promoted under such slogans as 'making work pay' and 'we're all in it together'. However, in the case of Motability, the figures don't actually add up to me and what the government are doing is totally illogical.

1. To start with 2 million people will be reassessed for PIP, and that includes many who have previously been given an indefinite decisions for DLA. Each assessment is said to cost £115 to £190. That's £230m - £380m of taxpayers money just on medical assessments, before administrations, travel expenses, assessment centre costs etc are factored in. 
2. Motability accounted for some 10% of the new car market in the UK and a reduction of 45% of this market share could have quite a serious effect of the UK car market and manufacturing, and the economy - basically we're talking about 90,000 less new cars and that must mean a loss of jobs somewhere along the line. 
3. Then there is the fact that many Motability cars are having to be returned well before their lease has expired, causing a sudden glut of particular models on the market where dealers and manufacturers had thought these vehicles were in use for 3 years, thus reducing values across the board. Although in a few years time, if there is still a deficit of 90,000 new cars entering the market, we can be sure to see an increase in the cost of used cars when demand outweighs supply.
4. While 45% of claimants are losing their motability vehicles (which have to be returned up to 4 weeks after the initial decision) on appeal (which can take up to 6 months at the moment) 47% of these are getting their Enhanced Rate back and can rejoin the scheme with another new car and all the costs that go with it.
5. There are also good will payments to be taken into consideration. Motability are giving £2000 to those who have lost their Enhanced Mobility status due to PIP and first joined the scheme prior to 31 December 2012, or £1000 if they first joined the between 1st January 2013 to 31st December 2013, plus a pro-rata rebate of any advanced payment made. However you can rejoin the scheme after 6 months and keep this money without penalty. Seeing as 47% of claimants are winning their appeals and appeals are taking around 6 months, this basically means the government are giving away taxpayers money - doesn't it? And I'm not sure if this is charitable or just idiocy.
6. Back in December 2014 I opted to have a car under the Motability Scheme and, after much research, chose a Nissan Juke Tekna because of its easy access and helpful tech. On the open market this car would have cost £20,260 (without any discounts) and now appears to be worth £13,900, a reduction of £6,360 over the 1.5 years I have currently been using it; over which time I have paid just £4,481. However if I had been able to keep the car for the full 3 years lease its value would have dropped to about £11,500, a reduction of £8,760, when I'd have paid in £8,962.20 (and again this is without factoring in any discounts the scheme would have had arranged with the manufacturers). My car, the Juke, was also quite expensive option. Without dragging through exact figures, I am sure something like a Nissan Micra would turn a larger profit over a 3 years lease period.

I'm not a politician, nor do I have a degree in economics, however I can look at the basics and think this just doesn't make logical sense. I see a government telling us all the country is in debt and cuts are needed, yet I see huge amounts of money being wasted and changes being made when none really were needed. Instead of poking a finger at the ill and disabled, labelling them us liars, why doesn't the government investigate the reason behind the huge increase in disabling illnesses that are currently affecting hundreds of thousands?

Reference:
https://samedifference1.com/2015/10/19/pip-20-metre-legal-challenge-fails/
https://samedifference1.com/2013/10/02/motability-support-if-you-fail-pip-assessment/
https://samedifference1.com/2016/05/06/government-agrees-to-talks-with-disability-rights-uk-on-pip-mobility-descriptors/
http://bellacaledonia.org.uk/2016/05/05/benefit-sanctions-are-britains-secret-penal-system/
http://www.telegraph.co.uk/news/politics/11157096/MPs-want-inquiry-into-1million-bonus-of-disability-firm-boss.html
http://www.dailymail.co.uk/news/article-2789975/motability-boss-paid-1million-bonuses-sparking-calls-parliament-investigate.html
http://www.disabilityrightsuk.org/news/2015/september/half-pip-and-esa-appeals-successful
https://www.benefitsandwork.co.uk/news/3419-costly-chaos-of-pip-and-esa-medical-assessments

'You're looking good' - but I don't feel it: How to respond when you have an invisible illness.

I cannot remember the amount of times someone has commented on how good I look, when I actually feel so ill inside. Many will mean this as a compliment, however it's hard not to take offence because some mean this compliment as a criticism; basically that there can't be anything wrong because you look fine.

What I wanted was a quick one liner I could drill into my psyche and use to dispel any feelings of criticism. So I would like to thank Lisa and all at Invisible Illness Awareness for this list that has been built up by the invisible illness community. It has provided me with what I needed and therefore I want to share for others to find that response they need to stay sane.

I've highlighted some of my favourites.

1. I am hangin’ in there…
2. I am so blessed. God is so good.
3. Drugs are a wonderful thing
4. I have my good days and I have my bad days.
5. I clean up well.
6. I have my ‘good’ days…. but this isn’t one of them!
7. Thanks, I wish I felt better.
8. That’s a perfect example of how you can never judge a book by it’s cover.
9. Thanks, but there are many aspects of my illness which you don’t see … would you like to know more about it?
10. That’s what most people think since pain can’t be seen most of the time. Have you heard about Invisible Illness Week? It’s really helpful to let people now that most illness is invisible.
11. I’m trying to appreciate that fact. I know the day may come when I have to use a wheelchair or a cane, and my illness will be more visible.
12. You should be on the inside.
13. Thanks. I have more to be grateful for than I have to complain about – which means I have a LOT to be grateful for!
14. Well I guess I did good job on my makeup, because I am having a hard time to tell the truth.
15. . . .And that’s all that really matters, isn’t it?
16. Powder and paint, make you what you ain’t!
17. It took a lot of work to look like this.
18. It’s God shining through me
19. It’s nice of you to think so, but you’re missing the pain and agony that I really am in.
20. And you look so wise. Looks can be deceiving though, huh?
21. I’m having a “good face” day.
22. Yeah. My kid thinks it’s cool I’m an ill person working under-cover!
23. I do a great job hiding how I really feel.My life is still very challenging and probably will always be, but I am hanging in there, keeping a positive faith, and gratitude as THE attitude. Thanks for their concern.
24. I’m trying my best to do well OVER my circumstances instead of being under them!
25. It’s up and down.
26. I’m still struggling, but it IS nice to have a day when I am able to pull myself together and make it out of the house!
27. I’m not complaining about my looks.
28. I’m very good at pretending.
29. Good, because if I looked like I feel it would scare you to death.
30. Actually, I still am really hurting…
31. I am 36 years old outside but 85 inside
32. Thank you. I’m on my way to the Oscars.
33. Thanks, I’m grateful for this good day.
34. Things aren’t always what they seem.
35. Praise God, I’m glad that he enables me to look so much better than I feel.
36. Thanks, that’s God’s joy shining through!
37. Have you ever heard of the spoon theory?
38. I am upright which is better the alternative
39. Thanks, want to swap bodies for a few days?
40. Thanks, I guess I am fortunate that I have an illness that can’t be seen.
41. Thanks. I like good days.
42. Want to step inside my skin?
43. It’s amazing what a shower can do. I guess I am all cried out for now
44. Thanks. . . I wish I felt it!
45. I’m not complaining about my looks.
46. I’m very good at pretending.
47. Looks can be deceiving (and smile)
48. Thank God for makeup!
49. Thank you for caring. I try to act like I feel better than I really do.
50. Thanks, I am trying to even though it will never go away. I just try to remember things could be worse.
51. I’d be great if it wasn’t for the pain.
52. I’d complain but who wants to listen.
53. If I can’t feel good, at least I am determined to look good!
54. I’m in good shape for the shape I am in!
55. Smoke and mirrors!

Additions (please feel free to add more in the comments):

• Only took 3 hours 
• Thanks to the person who invented make-up
• Must be the new lipstick
• If you only knew
• Thanks, I guess I look much better than I feel
• Thank you. I really needed to hear that, because I'm really struggling today
• Thanks. Can you please remember that - I may need reminding 
• Thank you. That made my day. I really try hard

Invisible Illness Awareness Week: Just One 2014 Campaign - Meme

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Actually there are a few: Fibromyalgia, Hypothyrodism, Endometriosis, IBS and I am now in the process of confirming a diagnoses of IBD (either Crohn's or Ulcerative Colitis)

2. I was diagnosed with it in the year: I was initially diagnose with IBS in 2001, then Endometriosis in 2002, Hypothyrodism in 2003, and Fibromyalgia was formally diagnosed in 2008.

3. But I had symptoms since: Forever! If I look back now I can see I had the initial symptoms of Fibromyalgia when I was in Junior School, and perhaps before. Although it didn't fully come out until after I'd had 3 operations (May 2002 Laporoscopy and ovarian drilling, Jul 2002 Laparoscopic Cholecystectomy, and Dec 2003 Laparotomy for adhesiolysis, removal of fibroid and endometriosis, plus correction of position of uterus) in the space of 1 year 7 months - I think that was the catalyst.

4. The biggest adjustment I’ve had to make is: Stopping. I was a fairly active person. Before diagnosis I was trying to hold down three jobs, study for a full time degree at university and did a lot of travelling with my partner. I had 'friends' and enjoyed a full life. Now I have nothing and no one. Friends have drifted away because I kept refusing their invitations and they didn't understand. I cannot work, so have lost contact with the outside world. Even my partner left because he could not cope and did not want to take on the roll of carer in his 30s.
I think the cognitive impairment (fibro fog) side is the hardest adjustment for me to take on. I am intelligent, but now find it hard to construct a sentence and thoughts just won't stay put for long enough to get a handle on them. I find that extremely upsetting.

5. Most people assume: I'm lazy and putting it on. If I was to just go for a nice long walk, everything would be better.

6. The hardest part about mornings are: Getting up. Morning stiffness, lack of good sleep/any sleep, headaches, pain, all add up to a miserable start to the day. Sometimes I get relief enough to do some tasks, occasionally within a couple of hours of waking, however usually the problems will linger with me all day making even the simplest of tasks a uphill battle.

7. My favorite medical TV show is: I don't watch a lot of TV because I can't concentrate on it for long. I really only watch Eastenders, because I have from the start, Casualty and Holby City. I love things like Dr Who and Sherlock, but they confuse the hell out of me now.

8. A gadget I couldn’t live without is: Just one?! Let me think... I could name any of the equipment I use in the home: walking stick, bath seat, grabber, etc, but actually I think it's my laptop. The internet is now my brain. Any questions I have, things I can't remember, I can 'Google'. I have access to other people through social media to know there is still life out there. There are silly games and things to do to pass my ,otherwise boring, existence.

9. The hardest part about nights are: I used to live in a detached bungalow, so if I couldn't sleep I could at least get things done. However I lost that when my partner left me and a useless doctor managed to help lose all my benefits (I've got them back now). I now live in a flat in a converted building (the only place I could afford). My neighbour can hear every single movement I make - and often complains, even though I am only living here! Nights therefore can be long and upsetting, lying there just looking at the ceiling, thinking about all the things that need doing. Tossing and turning in pain, never able to get comfortable.

10. Each day I take too many pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: Have tried so many, always in the hope something will help. Haven't found anything yet though. Besides they are too expensive and anything that may work needs long term/permanent investment, and I just can't afford that.

12. If I had to choose between an invisible illness or visible I would choose: Visible for sure. Even having Cancer would be better than this!

13. Regarding working and career: I've been a window dresser, an Insurance Clerk, an Insurance Claims Manager, a estimator in engineering (HVAC), a web designer, a writer, a web researcher, a emergency call operator, a barister, I went back to university to better myself, now I don't even know what day of the week it is half the time. Work and career don't exist to me now, although I miss them dreadfully.

14. People would be surprised to know: Just how bad I feel most of the time, as I try to put on a smile and joke. How slim I was. What I used to be like.

15. The hardest thing to accept about my new reality has been: I don't think I've truly accept my new reality, as I am still mourning my old life. Every time I think I have come to an acceptance, something else crops up and totally throws me backwards. Our welfare system doesn't help there. If I try to accept, push to do things to help, they take my benefits away and I can no longer afford to get the help I need. I spiral back down and get my benefits back. It's a horrible vicious circle, like some cruel game.

16. Something I never thought I could do with my illness that I did was: Pass - I'll let you know if I find something.

17. The commercials about my illness: I've only ever seem one commercial for Lyric (Pregabalin) and it was so awful and upsetting I actually wrote to the manufacturers and complained. In the commercial there is a woman looking like she's in a bit of pain, she takes a tablet and is racing about like she's got nothing wrong with her at all. I'm taking Lyric, actually I am trying to get off it, and I can categorically confirm the commercial is poppy-cock!

18. Something I really miss doing since I was diagnosed is: Writing. I just cannot concentrate for long enough now, or even remember what I have written. Reading is the same. I still read, but if you were to ask what happened in a book I read just a week or so ago, I'd probably tell you I'd never read it. That's hard to cope with when you have such an active and intelligent mind.

19. It was really hard to have to give up: Life.

20. A new hobby I have taken up since my diagnosis is: Minecraft. I know most people think this is children's game, but it is actually quite educational and can become very immersive. In its modded form the game adds physics, electronics, quantum mechanics and problem solving, as well as the creative building aspect it's known for.

21. If I could have one day of feeling normal again I would: Just one day, umm, gosh, travel. I'd got out for the day. Maybe London, or a zoo/wild animal park, like Port Lypme.

22. My illness has taught me: How worthless our walfare system is in the UK. How useless our NHS is. How utterly incompetent and corrupt our governments are.

23. Want to know a secret? One thing people say that gets under my skin is: Just do some exercise and it'll all be better

24. But I love it when people: Help without having to be asked. When I don't have to explain myself.

25. My favorite motto, scripture, quote that gets me through tough times is: Wisemen speak because they have something to say. Fools because they have to say something - Plato

26. When someone is diagnosed I’d like to tell them: To be strong and to laugh whenever they can.

27. Something that has surprised me about living with an illness is: Who my friends really are.

28. The nicest thing someone did for me when I wasn’t feeling well was: The washing-up. It may sound trivial, but it had piled up and was stressing me out as the task got bigger. It was such a wonderful feeling of relief to have a clean kitchen again!

29. I’m involved with Invisible Illness Week because: I can connect with people who understand and learn new ideas through them.

30. The fact that you read this list makes me feel: Hopeful. I hope people will stop judging me for what they see and look beyond. Thankful that you have taken the time x