Why do we say, 'I'm fine', when we know we're not?

Why do we say, 'I'm fine', when we know we're not?


I have to admit that I'm just as guilty of doing this as the next person :~/


My favourite response to 'how are you today?', is ''Same old, same old", normally said in a fake-funny way, that immediately dismisses the subject, which then saves the asker the embarrassment of actually having to listen to the truth!


I do this, mainly because I was getting totally fed up with saying, 'oh well, you know, not so bad today', while watching that veil of boredom come down over the listener's face or, worse, the curl of the lip that spoke of either disgust with me, or disbelief of my pain!


I don't know whether it's the old British 'stiff upper lip' or, as I really think of it, 'the fear of opening up to other people, and then being rejected' but, whatever it's called, I always feel so guilty if I actually tell anyone exactly what my life is like - I guess that's why I decided to write about it on this blog!


I called my blog 'Ouch' Potato, as a play on the phrase, Couch Potato, with 'ouch', instead of couch, because that's what my life is like - one of chronic pain all over my body, 24 hours a day, 7 days a week, which means that I'm virtually bed-bound for the majority of the time, (and 'bed' potato, just doesn't have the same ring, does it?).


The only time I'm out of bed, is when hubby is helping me to get myself between the bedroom and bathroom, or when I'm forcing myself to walk back and forth between the bedroom and kitchen, weight full on my elbow crutches,  (and hubby hovering in case I collapse, as my legs have a tendency to do at the most unexpected of times) because I'm in so much pain, my body needs to move around, despite the added pain of movement!


Have you ever had that? Pain so intense it makes your body fidget and jingle, as if you're plugged into an electric socket? That's how I feel most of the time. Trouble is, as soon as I put any weight onto my feet, I'm in even worse agony, as it then feels as if I'm walking across broken glass in bare feet - see? I can't win, whatever I do :~/ 


But it's actually amazing as to how much pain a body can learn how to bear, and still put on that brave face when a rare visitor comes.


As soon as there's a knock at the door, I quickly rub my face, hard enough that there's some colour there instead of the usual greyness induced by pain, then I hastily make sure I'm looking not too grungy, and then I plaster on the fake 'I'm well' smile that I've perfected over the years.


When the visitor comes in, I put on my bright and welcoming voice, as if I've just been disturbed while being terribly busy with something or other, and then I chirpily give my stock answer to the stock question - and the second I do, I know that, once again, I've lost that chance of saying exactly how I do really feel, which then makes me feel guilty, as if my illness and pain are something I've brought on to myself, instead of something happening because  of genetic problems I was born with :(


I guess the real problem with all this, is that, over the years, because of the gradual sinking into such poor health, my circle of friends and acquaintances has shrunk from a few hundred, to a handful of people, and so the few hardier types who still brave this den of illness, are ones I don't wish to frighten away with my tales of woe :~( 


That good old 'Catch 22' situation that all of those, in the same position as myself, find themselves in!


My illness and disability has been something that, at first, just crept slowly into my life. At 32 I was at my peak of fitness, working six days a week and, on my one day off a week, which was always a Monday, working side by side with my hubby, who was a tree feller/surgeon at the time. But then it was discovered that I had cancer of the cervix, and so I had to have a hysterectomy which, thankfully, solved the problem!


What I didn't know at the time, was that the anaesthetic given to me, had triggered something that would affect me for the rest of my life! 


Year by year, month by month, and then week by week, my health began to become worse, and things got harder and harder for me to do, with pain levels growing harder to cope with. I started off having to use a cane to walk with, as my legs began to give way at the most unexpected of times and then, as time went on, I needed 2 canes to walk.


When I had finally given in, and went to see my doctor, he told me it was all in my head, and so I went away again, and battled the pain until, once again, it got too unbearable to live with, and the over-the-counter painkillers were just hopeless. So I saw my doctor again and, with a sigh, he prescribed me paracetamol, and told me that he'd get some blood tests done.


I think that's when my real problems started, as nothing actually showed up in my blood at that time. I don't know what tests he did, as he didn't tell me, but all I got when I phoned up for the results, was that they had all come back clear, and there was no need to see my doctor.


And so I went on again for months, desperately pushing myself to keep on with all the things I used to do, until, once again, it became unbearable for me. So I saw my doctor and, once again, he sighed at me, and told me it was all in my head as, 'don't forget, all your blood tests came back negative!'


That last time, I went home again and, the minute I closed the door, I broke down in tears, only to find that a couple we'd known for years were in the living room. But that turned out to be a good thing as, because they asked me at a time when I really needed to tell someone how I felt, I was totally honest with them!


The first thing they suggested to me, after learning that I had been told it was all in my head for 5 years, was to change my surgery, and see their own doctors. I knew by then that I had nothing to lose so, a few days later, after I'd managed to recover some of my strength from that first trip into town, I went to the other surgery, and signed on with them, which was the best thing I've ever done, I think!


Within a month, I had an appointment with a Rheumatologist and, a few weeks later, it was confirmed that I had both Arthritis and Fibromyalgia - it's no wonder I had so much pain in both joints and muscles! I told my consultant about the negative blood tests, and asked why the arthritis hadn't shown up in them, and he told me then, that there are many types of arthritis, and only half of them will show up in the blood! He also told me that, because I'd been pushing myself for so long, my fibro was worse than it might have been, and if I had been to see him when it had first started to develop, it might not have got as bad as it now was!


Thank you doctor! Grrrr


Anyway, as time went on, I developed IBS, and then Lymphodaema in my leg, which had me bed-bound for some months, and meant that my hubby had to give up work to take care of me. Then, just as I was starting to get about again a little, over two years ago, my hubby caught Swine flu at a party I'd persuaded him to go to, which he then brought home to me.


We both went through a few weeks of hell at that time, with hubby being the worst, as I seemed to have got a slightly lighter dose than he, with it coming second-hand, so-to-speak. It took hubby a good 3 months to recover fully but, unfortunately for me, I just couldn't seem to get rid of the sheer exhaustion that it had brought on me. I then went through months and months of pain and tiredness, never shaking it off. For years, I'd actually only been able to sleep for maybe 2-3 hours out of 24, because of the pain I was suffering, but now I was sleeping for 17-20 hours a day, with hubby having to force me awake to eat, drink, wash etc. Even the pain I was in didn't keep me awake!


Month by month went by, with my visitors getting fewer and fewer, as nothing changed in my life, and I guess they all got fed up with me being either asleep, or only half awake, when they visited. By this time, I had only been out of the house 3 times in 2 years - twice to see my new doctor, and once the optician as, by now, I was also getting cluster migraines, and my eyes needed checking first, in case that was the problem - which it wasn't :~/


My doc then ordered a whole barrage of blood tests, and it was then that it was discovered, that I also had Antiphospholipid Syndrome - a blood disorder that could cause thrombosis, and something that my mother's father had died from!


This started a big caffuffle, as my whole family then had to be tested, as it could be passed genetically through the family. Fortunately, I was the only one who seemed to have inherited it and, because of the hysterectomy, I wasn't in as much danger of blood clots as I might have been, which meant I didn't need to be on Warfarin to thin my blood, thank heavens!


With all these different health problems, it was a struggle for my doctor to find the right medication for each thing, that wouldn't affect something else, but we eventually managed to settle down to a course of medicines that at least numbed the pain a little, while keeping all the other symptoms settled to a certain extent - but it has been a constant juggling act with them all. By this time, I was on morphine for the pain but, even though the pain got even  worse over time,  I was afraid to take anything stronger, in case I became immune to the dose I was on, and so I just clenched my teeth to the pain, and went on surviving life bed-bound, in constant pain, and with more and more health problems surfacing.


On my last visit to my doctor, he had ordered some more blood tests, as I'd been having symptoms he felt needed examining closely. When they came back, he immediately made another appointment for me to see my Rheumi consultant and, months later, when I eventually got to see him, I was told that I also now have Lupus and Chronic Fatigue Syndrome!


Oh boy! I'm just so greedy, aren't I?


Not for me just the one thing wrong - oh no!


So, as I am today, I have now been diagnosed with Arthritis, Fibromyalgia, IBS, Lymphodaema, Antiphospholipid Syndrome, Cluster migraines, Lupus, and 
Chronic Fatigue Syndrome - and that's without all the other stuff affected, like the dry eyes and mouth, the giddiness, ear-aches, nausea, rashes etc! 


And people wonder why I get fed up with saying 'I'm fine!'

DPAC: So the Welfare Reform Bill doesn't affect YOU?

So The Welfare Reform Bill Doesn’t Affect YOU!?! #WRB

Posted: 05 Feb 2012 12:04 PM PST

Many thanks to Darkest Angel 32 for letting us repost this blog

As the deadline for the Government to haul the Welfare Reform Bill through parliament draws dangerously close and its implementation looms large I want to make sure that YOU know how it might affect your life.

It is a government and media peddled myth that this bill is about the unemployed. It’s not. This bill will affect millions of employed people as well as millions of disabled adults and children. This bill is not designed to solve the problems of worklessness and benefit dependency as I will explain. this is about money, money for the treasury that none of YOU will see a penny of.

The Welfare Reform Bill will pave the way for Universal Credit which will replace the following benefits (of which some of YOU will be in receipt of):

Income Based JobSeekers Allowance

Income Support

Income Based Employment and Support Allowance (ESA)

Housing Benefit

Child Tax Credit

Working Tax Credit

Disability Living Allowance DLA will be replaced with PIP (Personal Independence Payments)

If your household has a higher rate tax payer you will no longer be entitled to Child Benefit.

Council Tax Benefit will be the responsibility of your local authority who will be required to save 10% of the budget annually, therefore reducing the amount of people who claim that particular benefit. Pensioners are protected.

The Social Fund will be abolished. Funds for this kind of financial help will be the responsibility of local authorities. The funding will not be ringfenced so councils are free to use it in any other area. Currently anyone can apply for a crisis loan, even YOU.

So, if you use any of the above the government are after YOU!

It’s you they want to move out of the area, it’s your children they want to go to another school, its your shopping money, rent money, bill money they want to take away, not just mine.

Don’t forget the benefit cap. £26,000 a year, that’s £500 a week and £18,200 or £350 a week for a single person without children. (read the equality impact assessment) I can hear you screaming now, regurgitating that rubbish ‘hard-working families don’t earn that much!’. You are absolutely right because if you were earning £26,000 a year you would also be receiving child tax credits if you have children, working tax credit, perhaps housing and council tax benefit as well and of course child benefit, so in reality your income would be a lot higher than £26,000 and your child benefit can’t be taken away if you naughty people dare to receive more than £500 a week. Get the calculator out and work out how much YOU get or should get in benefits!

I’d like you to remember that when thousands of families are forced out of other areas into yours you will have real problems finding cheap accommodation because there will be more people and less available houses. There will be more children in the schools, more strain on local services including the NHS. When you scream that those ‘scroungers’ should move out of London, remember, they’re coming to your town or city sweetheart. It’s also worth noting that many people who currently live in rural areas will suffer and have to move as well. You’re local authority will also be paying for the cost of temporary housing and the other costs that come with homelessness if anyone in your area is evicted because of these changes. It’s far cheaper to just scrap the cap. Housing benefit was capped a little while ago anyway. at a maximum of £400 a week for a 4 bed property, £250 a week for a 2 bed property. Single people under 35 only qualify for the shared room rate, which previously applied to under 25′s. That has already seen people evicted from their homes. The ‘family friendly’ Tory party have also made it a lot harder for non resident parents to have overnight access to their children by reducing the housing benefit available to single under 35′s. A far better solution would be to cap private rents, that would save the government a fortune in benefits but some of them are landlords so maybe not.

God help you if you or your relative is disabled or ill. The Government don’t like you. They don’t like your disabled friends or neighbours either. If you are unfortunate enough to get cancer the government have decided that you have 12 months to be cured, otherwise, if your partner earns the enormous sum of £7,500 a year they’ll cut your ESA completely. (That applies to anyone claiming it by the way but we hoped cancer patients might at least be exempt from this nasty condition).

They will replace DLA with PIP which most people wont be eligible for even though they have serious illnesses and/or disabilities. Those people will be told they’re simply not ill or disabled enough and will be left either appealing, which is a very long distressing process, or left without. Just in case you read the daily mail I can tell you, hospital visits, additional aids to manage with illness and disability and day to day living requires extra financial help for many people in that position. I know from experience with disabled and seriously ill relatives that these things cost money many simply don’t have. Also the ‘free cars’ you have read about aren’t free, they’re paid for with the mobility component of DLA so people are actually paying for them with the money they get to help them. I’d say that’s fair, wouldn’t you? It’s worth bearing in mind that DLA is not means tested.

The Government also decided it would be a lovely idea to cut the disabled element of tax credits (Universal Credit when it switches) in half for disabled children who receive the lower rate of DLA. Delightful. That means people like one friend I have won’t be able to afford the petrol for her car. Her son can’t use public transport for various reasons, her car means she can take him out instead of staying in all day. It means she can safely take him to school and the family can lead a normal life. No petrol means an extremely difficult time doing the everyday things YOU take for granted.

On the subject of disabled children, the Government have decided it’s a good idea to prevent young people who have never worked due to disability from being able to claim contributory ESA. Currently they can.

There will now be a penalty for ‘under-occupation’. If you have a spare room and you receive housing benefit you will now be penalised for it, even if it’s for your kids who stay at the weekend, or to store any equipment you need to help you live a full life, such as a wheelchair or a commode. You’re going to be charged for that even if you’d like to downsize but can’t because there are no available properties in your area.

There are a few other gems in the Welfare Reform Bill that haven’t been very widely publicised. Yes, I’m a geek, I read the entire bill, twice actually.

When your youngest child reaches 5 years old you will have to get a job. You will no longer just attend a work focused interview, you will sign on and get a fortnightly interrogation, so if you have a full time job, hang onto to it dear.

Such things as work focused interviews will look like a fairytale compared to the conditionality in store for you under the Welfare Reform Bills proposals.

Being in work is not a safeguard against DWP intrusion. There will be in work conditionality as well.

If you do not work enough hours or earn enough money DWP will be well within their rights to haul you into the jobcentre and tell you to increase your hours, get a second job or beg your boss for a pay rise. Yes really! If you do not comply you can be sanctioned (I’ll get to sanctions in a minute). So be afraid, be very afraid.

Now, sanctions. For a first sanctionable offence you can have your benefits stopped completely for a month (4 weeks). You can ask for a hardship payment but you will have to pay that back, it’s not free and won’t be as much as what you would normally receive. For a worse offence you starve for three months, for a serious offence you lose everything for three years. Yes, that’s right, three years! You should also be aware that DWP staff on the frontline are given a quota of how many people they have to refer for a sanction currently, whether those people have committed an offence or not, so you could be completely innocent and still lose out for a month, three months, or three years. Sanctions don’t actually work anyway. There has been much discussion in the commons. Chris Grayling says the Government plan to exclude child and housing costs from any sanctions but still, three years is a long time.

Conditionality does not stop there either. You can be required to improve your personal appearance. Quite what that could entail I do not know. It could be anything from have a bath, washing your clothes or remove your piercings, cut your hair etc. There are no specific details in the bill:

6C Work preparation requirement:

(1) In this Act a “work preparation requirement” is a requirement that a
claimant take particular action specified by the Secretary of State for the
purpose of making it more likely in the opinion of the Secretary of State
that the claimant will obtain paid work (or more paid work or betterpaid
work).
(2) The Secretary of State may under subsection (1) specify the time to be
devoted to any particular action.
(3) Action which may be specified under subsection (1) includes in
particular—
(a) attending a skills assessment;
(b) improving personal presentation;
(c) participating in training;
(d) participating in an employment programme;
(e) undertaking work experience or a work placement;
(f) developing a business plan;
(g) any action prescribed for the purpose in subsection (1).

The section above also states you can be forced to undertake work experience/placement. That, I assume, means the work programme. Working for your benefit, essentially for free. (If there’s enough work available for the work programme there’s enough work for a proper job).

There is a clause in the bill which states:

Vouchers:

6 (1) This paragraph applies in relation to an award of universal credit where the
calculation of the amount of the award includes, by virtue of any provision
of this Part, an amount in respect of particular costs which a claimant may
incur.
(2) Regulations may provide for liability to pay all or part of the award to be
discharged by means of provision of a voucher.
(3) But the amount paid by means of a voucher may not in any case exceed the
total of the amounts referred to in sub-paragraph (1) which are included in
the calculation of the amount of the award.
(4) For these purposes a voucher is a means other than cash by which a claimant
may to any extent meet costs referred to in sub-paragraph (1) of a particular
description.
(5) A voucher may for these purposes—
(a) be limited as regards the person or persons who will accept it;
(b) be valid only for a limited time.

So ladies and gentlemen, if you are awarded Universal Credit DWP are well within their rights to pay you in vouchers for ‘particular costs which a claimant may incur’. Someone else may know better but as far as I know that could be food, clothing and rent. I had no idea I lived in America. I don’t know if this only applies to special circumstances.

We should not forget changes to the way the CSA works. This applies to those of you who may become a single parent in the future or who have a precarious personal arrangement with a non resident parent (NRP), whether you work or not. The Government originally wanted to charge you £100 up front to access the service (£50 if you’re on benefits). They ‘promised’ to change that to £20. They also want to take between 7% and 12% off every single payment destined for your child(ren) from the NRP. So if your child receives £100 a month from your ex, they will, in reality, only get between £93 and £88 a month instead. The Government will be pocketing the rest. No one knows what’s round the corner, any of you could find yourself bringing up children alone.

Also, if you make a claim while in a couple, an error is made and repayment is required, any claim you make either alone or jointly with someone else will be liable for the repayment if it has not already been repaid.

Being part of a couple does not exempt either of you from conditionality, in work or not. You will both be required to conform to the same rules or face sanctions when your child(ren) are a certain age and when your youngest is 12 you will both be required to work full time, there will be no option for one of you to have part time hours. Welcome to the end of one of you staying at home to care for the children, or being there when they leave for school or return home, there will be no designated care giver, you both have to go to work now. Of course your long hours and lack of family time will be blamed for the ‘feral youth’ but only after lone parents have received a good dose of demonisation first.

No one is sure how childcare will work. Currently working families can claim a childcare element of working tax credit which allows for up to 70% of your childcare costs. The details of future arrangements are not clear.

Personally, I’m bricking it. My plan was to try and work part time when my youngest started school (providing there’s an actual job to have!) but part time is out of the question now to avoid the in work conditionality. I have a 2 choices, pay for childcare (providing I have sociable shifts, I don’t know any childminders who start at 5am!), or I make my oldest child sacrifice her own future to become a substitute parent to her younger brother and sister. That’s the girl who wants to go to college and university and really make something of herself. I could ask her to stop all that and please Mr Iain Duncan Smith by being my unpaid childcare. Or`I could find a rich man willing to take on me and the kids, sell my soul for money. That might please the Government. Decisions, decisions.