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

Invisible Illness Awareness Week: My Invisible Fight 2015 Campaign - Meme

30 Things About My Invisible Illness You May Not Know
I completed my Meme last year and wanted to do it again to see how things had changed and how I feel about my condition now, so here goes...

1. The illness I live with is: just Fibromyalgia, but honestly that is enough. I do have other things wrong with me: hypothyroidism; IBS; Endometriosis; and a recent CT scan has shown a small benign lump in the lining of my brain. However I am sick and tired of feeling like I have to justify my life by reeling off a list because people don't understand - that is there problem, not mine.

2. I was diagnosed with it in the year: formal diagnosis in 2008, but I've had Fibromyalgia, in a milder form, a lot longer than that

3. But I had symptoms since: My Mum, who also has Fibromyalgia, say she looks back and can see it in me from junior school. I just don't know anymore. My fibromyalgia is now like a big black, all encompassing blanket, making it hard for me to look back or forward; in fact hard just to deal with today.

4. The biggest adjustment I’ve had to make is: Last year it was stopping, because I had previously been such an active person. However now it's actually getting moving. I'm so tired all the time, but at the same time can't sleep properly, I just feel like a large slug. Life has gone into slow motion and my brain has decided it no longer wants to work. Combine that with the pain, constant headaches, dizziness, and much more, and basically life has come to a standstill where just keeping me and the house up to scratch is a constant nightmare. I hate being so slow, especially my mind. I am an intelligent person, but now come across as a slurring, stuttering fool - it's very embarrassing and has made me even more reclusive. So thankful for email and the internet, because I refuse to make phone calls anymore.

5. Most people assume: I'm just lazy. I have a high IQ, am articulate, and intelligent, so (when feeling up to it) can argue my own corner. This makes people think there is nothing wrong with me and I'm just a scammer.

6. The hardest part about mornings are: Mornings? What are they? I rarely get going until mid-afternoon and then hate myself for wasting yet another day.

7. My favorite medical TV show is: Casualty and Holby City (UK). Although I do love House when I am able to concentrate, and have found my medical knowledge has come to such a point I can often work things out before House does.

8. A gadget I couldn’t live without is: My computer. I have a lot of bit and bobs to help me round the home, but without my computer I have no life basically. It is my window on the world, it is my memory, it is my brain, it is my social life, it is entertainment, it is my world - well apart from my cat lol

9. The hardest part about nights are: Sleeping. Nights can be so long and depressing. I have moved now, so no longer have my horrible neighbour complaining at every move I make. Although it's taking a long time to get over what he put me through and I still creep about to a certain extent. Even though I am able to get up and do things now, I still feel tired so I can't do a lot.

10. Each day I take __ pills & vitamins. (No comments, please) 10 ish and a patch

11. Regarding alternative treatments I: I gave up with alternative treatment a long time back. I found there were things that helped a little, but needed to be continuous (ie aqua therapy at least once a week, myofascial massage weekly) and I just couldn't afford that kind out outlay. Besides being on benefits puts me in a catch-22 situation; a vicious circle. If I was to pay for alternative treatment myself and feel a bit better, the government would then taken my benefits away and I'd be back to square one. I would have to work, I would not have the time for treatments (or would just be off benefits and have no money for treatments), I'd get worse again, I'd lose my job, I'd have to claim benefits. Been there, done that, and NOT doing it again.

12. If I had to choose between an invisible illness or visible I would choose: Visible. Unless it was cancer. In a grim way I often have thought I'd rather have cancer because at least people have a sympathetic view/knowledge of it and it has a kill or cure ending - you know where you are more so than I do now.

13. Regarding working and career: None. All gone. In a past life I seem to remember being career oriented (hence no kids), but that's long gone. Work now scares the life out of me. It's hard enough to justify myself to friends and family, so how on earth would I do that with an employer. Stress levels would be sky high as I felt compelled to push myself to do things I cannot.

14. People would be surprised to know: I do miss life. I would like to be invited out, even if I can't always go.

15. The hardest thing to accept about my new reality has been: Other people. I think I am now finally in a stage of acceptance. However others never cease to amaze me with how they react.

16. Something I never thought I could do with my illness that I did was: Still haven't found anything :(

17. The commercials about my illness: Pass

18. Something I really miss doing since I was diagnosed is: Going out and enjoying myself. I rarely leave the house now, and if I do it's such an effort I just feel crabby.

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

20. A new hobby I have taken up since my diagnosis is: I have just taken up colouring (adult colouring books). I do find it relaxing, but can only do little bits at a time because of the pain and concentration required. All too often I will push myself to finish a bit and then regret it.

21. If I could have one day of feeling normal again I would: OMG! I don't know where I'd start. I used to have the occasional 'better' day, but at the moment I have been in the depth of a flare that started just after Christmas (2014), so can't remember what it's like to feel good. If it was just the one day and I knew when it was (so I could plan in advance) I'd make it special and go somewhere I'd remember for a good while after. I'm thinking the new Star Wars exhibition at Madame Tussauds or Port Lympne Wild Animal Park and Safari Park Experience.

22. My illness has taught me: Not to rely or trust others (apart from family), what a bunch of utterly incompetent liars the government is and that the NHS isn't as glorious as it is made out to be.

23. Want to know a secret? One thing people say that gets under my skin is: But you look fine.

24. But I love it when people: Help without having to ask.

25. My favorite motto, scripture, quote that gets me through tough times is: 'Illness is neither an indulgence for which people have to pay, nor an offence for which they should be penalised, but a misfortune, the cost of which should be shared by the community' -Aneurin Bevan, Founder of the NHS. In other words, I deserve the benefits I get and people can keep their opinions about lazy scammer to themselves.

26. When someone is diagnosed I’d like to tell them: I'd rather not because it's a bleak world they are entering and I don't want to give them any false hope.

27. Something that has surprised me about living with an illness is: How horrible some people can be.

28. The nicest thing someone did for me when I wasn’t feeling well was: Recently my Dad has done so much for me I have been overwhelmed. He's in his 70s and doesn't find it easy either, but his help with moving, getting the new place sorted, making calls for me and so much more, has left me indebted. To think, 20 years ago we really didn't get one well, now I can't (don't want to) imagine a world without him.

29. I’m involved with Invisible Illness Week because: It's a time I feel I matter and am with other who are (so unfortunately) going through the same kind of experience as me. The great thing is it's not just a week now, because there are so many coming together on the FB group year round - somewhere I can always let of steam and there is always someone saying 'yes, that's me too'.

30. The fact that you read this list makes me feel: Less alone and thankful you have taken the time.

Peha 'Spomal' (Slow Down)

Spomaľ/Slow down Za niečím krásnym/For something beautiful tak rýchlo ako sa dá/so fast as it is possible/ so fast as possible do tvojich básni/to your poems márne rým hľadám/I search a rhyme vainly/ I vainly look for rhyme Za niečím zvláštnym/For something strange/ For something special do záhrad kde nie je kríž/to gardens where is no cross kam sa to blázniš/where are you hurrying up */ where you hurry like crazy nestíham s tebou ísť/ I cannot manage to follow you **/ I'm not able to go with you Spomaľ máš privysokú rýchlosť/Slow down your speed is too fast/ slow down you speed is too high vnímam ju len šiestym zmyslom/ I feel it only by my 6th sense/ I perceive it only with sixth sense máaaam závrat/ I am dizzy/ I have vertigo náhlim sa po tvojom boku/I am rushing by your side/ I hurry by your side a mám už dosť zbyťočných pokút/I am have enough of unnecesarry penalties/ and I have enough idle penalties máaaam sa báť?/Am I to be afraid?/ Should I be affraid? Za niečím stálym/For something permanent/ For something constant tak rýchlo ako to dá/as fast as it is possible/ as fast as possible sa všetko máli/everything seems too little/ it seems that all isn't enough aj napriek výhodám/despite of benefits/ against benefits Za niečím bájnym/For something mythical/ For something mysterious do záhrad kde nie je kríž/To gardens where is no cross kam sa to blázniš/where are you hurrying up/ where you hurry like crazy nestíham s tebou ísť/I cannot manage to follow you/ I'm not able to go with you * - blázniš - means hurrying up but I would say better is "hurrying up very enthusiasticaly". There is no word for it in english. ** - meant that he is too fast for her

The Day

The blackness of slumber lifted and she stretch to greet in the morning, but quickly recoiled. She hurt: her head hurt, her neck hurt, her shoulders hurt, her back hurt, her arms hurt, her hands hurt, her hips hurt, her knees hurt, even right down through her feet. Lying on her side, curled up in the foetal position, she shut her eyes and wished for the blackness to return and take the pain away. But there was no comfort and no more sleep. Time to rise, she guessed, and confront the day.

Yet another day. Sitting cradling a mug of coffee, it was time for the next daily ritual. The cardboard boxes lined out in front of her, she opened them one at a time. Two tablets from that box, one from this. Gulping each down with a swig from the mug. They helped, she was certain of that after missing the plethora of starch buttons, but only to take the edge off her misery.

It would probably be a further two hours until she had the strength to move and take on the day, until then she made herself as comfortable as possible on the sofa and turned her attention to her laptop. Silly applications and games are what she took on to pass the time. To think a year ago she was sitting exams for the final year of a degree, something that she couldn't contimplate now; most of the time she didn't even know the day of the week.

Forgetfulness, the fog that encroached on everyday being, accompanied the pain and lethargy as sure as salt goes with pepper. There was no escaping it, the cloak of grey that hung like a curtain blocking out continuity of thought. So what did the day hold. A diary was a must. Everything listed, from the housework to highlighted appointments that mustn't be missed. It didn't mean she'd do it that day, but then she had her life and nothing was that important.