That old issue of money

Once again my legs are really painful this morning, I woke as I often do for some reason with my right foot not in the bed, but on the ground. Why I keep doing this I don’t know, but I am now guessing that when I am asleep I somehow don’t have the strength to pull it back in under the covers, as often it is freezing cold and painful when I wake. It only started happening a couple of years ago, never in my life have I been aware of it before and I really don’t think that for some mad reason, my body has suddenly decided it’s a good place to put it. That might explain some of the pain in that leg, but it has no bearing on the other one, which was comfortably tucked up and warm all night. I have to admit the whole house is cold today, the temperature dropped suddenly on Thursday and since them, well there has been little improvement, I refuse to switch the heating back on, as it is now far enough into the year to not be spending extra money on the electric. I have always been careful with money and I have always refused to just waste it, but it really is a skill that the longer you are trying to live on what the state supplies, you have to take seriously and budget all the time. Without budgeting, I can see just how easily someone could find themselves in real trouble at a point in their lives when they have no choice, but to accept what is given to them.

Personally, I have found it not as bad as the stories I keep hearing, especially as I am still paying a mortgage and all the other bills that come with a house. I still don’t see how it is fair that if you rent, your rent is paid for you, but if you own your house, you just have to get on with it. I honestly think that they should just make an accommodation payment, based on a regional average. It is then up to you if you use it on rent or mortgage, but it would be covered up to that maximum, if your rent or mortgage is higher then it is up to you to find the rest. It really does seem that you are encouraged to buy your own home, but if something happens, like illness or the requirement to go into an OAP’s home, from then on you are penalised for doing what they want you too, a true loose, loose situation. I have to admit that politics is something that I have little interest in and I have actually to date never even voted in any election there has been, so I actually have no right to complain at all. I am not really complaining as I said I manage all right, but I have an inbuilt feeling of what is fair and what isn’t and this just happens to niggle on the not fair side of life for anyone caught in this situation. In reality, I have to manage on £300 a month less than those living in rented accommodation who are permanently disabled, I manage so I can’t see how anyone else in my position can’t.

It is hard for anyone out there planning their futures if money was no issue, then right from the start of your working life you could pay into continual pensions, insurances and so on, all there just in case the worst happens, but life isn’t like that. Even when you are careful, and you do try to cover your back it can still all go wrong, just as it did for me when we bought this house. We took out a policy that should have paid the mortgage off as soon as I was diagnosed, but it didn’t, because I made one mistake when filling in the form. I answered as I believed correctly because the doctors told me there was nothing wrong with me, I had been told that for years and I thought that made it correct. One question about skeletal muscular pain, incorrectly answered and it didn’t pay out, we tried the ombudsman, but no luck, all we got was our money back. On the other hand, I took out redundancy cover with cost a few pounds a month and it paid out in full for a whole year, in my case a good buy. I honestly don’t know what I would advise anyone out there who believe themselves to be fit and healthy to do. My life has proved that anything that could happen, just might, but most people make it from birth to death without issues. My best shot would be to say, if you can afford any policy you consider a good buy, do it, because if you don’t, you might well be sorry, and when you fill in the forms, put down everything you can think of over a whole week, even if you think you are wasting your time, if it is written there, they can’t say you didn’t give accurate information.

I don’t know why but I have never had the slightest problem in dealing with the benefits system, I constantly hear that people are having to fight to get anything, but my experience has been the total opposite. From my very first claim for Disability Living Allowance on, has just been a case of filling in the form and being awarded just what I asked for. I don’t know if my specialist or GP laid out my future so clearly that they had no choice, or if I have just been constantly lucky, but to date I haven’t even spoken to anyone and no one has ever asked me in for an interview or anything else. Personally, I think it is a case of just like the insurance companies, give them every detail they ask for, plus a bit more and wait and see what happens.

Without a doubt my lifestyle has changed out of all recognition, having your income cut in half is inclined to do that, but on the other hand, I don’t really need the money I used to, once housebound there is far less to spend your money on, that is a simple fact. Finance is a difficult one for most people, I know that without a doubt, that we have years of living on the frugal side. From no more take out meals, except on special occasions, to changing the brands we eat to bring down those bills a little more, will never end. Adam, of course, is still working, but his wages are more or less spoken for due to large debts he is still paying off, he does make his contribution but it covers only a couple of bills the rest as it always has been, is down to me. Yet I still feel we live a good life, we have enough food, we have the heating when it is really needed, the basics are all there, it’s just the luxuries that no longer exist and let’s be honest, we can all live without those. Overall I have little to complain about when it comes to benefits, yes I would like more but who wouldn’t, but what I do have is actually enough for us to live on and to live a reasonably good life.


Please read my blog from 2 years ago today – 05/05/12 – No quite roadkill

I woke early this morning, it doesn’t happen that often as usually my meds and my MS hold me at almost comatose state until the alarm wakes my at 7:30, it doesn’t matter what day of the week it is I always make myself get up at the same time. You would think that with me always being tired and not having a job at the moment, that I would allow myself to lie in or sleep until I wake. That would be asking for far more trouble than it is worth. I have found that there is one simple thing that helps to keep myself reasonably steady is routine if I break it I am in trouble. So waking this morning and see the time was only 5:30, I tried to go back to sleep.

I had woken because I was in pain. No matter what position I tried to lie in, I couldn’t find any way that was comfortable. My gut must have been feeling left out from the early morning activity so it joined……

3 thoughts on “That old issue of money

  1. I have to disagree with you on the benefits system and either you have been incredibly lucky with timing or something else. Take it from me as someone who knew a lot about DLA (Disability Living Allowance) from when my son was a child and I had to claim it on his behalf. It did work out pretty ok and I did the forms myself, he had to re-apply every 2 years and eventually I requested longer as having Cerebral Palsy, it was never going to improve, get better and he finally got it for life.

    But in recent years, many things with benefits have changed, you couldn’t begin to imagine as it’s really awful and too long and complicated to go into and very distressing. The other factor is that DLA is for people who can and can’t work, it’s not an out of work benefit and many people don’t seem to get this? When you get into the money you live on, such as Incapacity Benefit, ESA, JSA, IS, week to week and you are unable to work or can’t get work and don’t have a partner’s income to fall back on, that’s completely different. Working age people are being tormented if they are ill, sick and or disabled and can’t work. There has been a concentrated campaign to get most of these people off any benefits, at all cost, make them suffer, punish and humiliate them. I worked for DWP for 5 years, so I know from the inside what they are up to and what they are capable of. Since finishing working for them (by the way, as an employer they treated me badly&were unsupportive)I have been on JSA, looking for work and I know what I was expected to do, am reasonably intelligent and informed and they still gave me grief! I am now going through ESA as I was told my health was becoming worse through all the Jobcentre crap and now I’m getting even worse grief.

    I am also involved with lots of campaign groups and charities and I know of many people who are being tormented just to get the basics to live on. Why do you think over 11.000 people have died up to the end of 2011 after being found “Fit for Work! by ATOS, a private company paid millions by Government to get people off benefit at any cost. They then stopped giving out the figures as they knew how bad it looked!! I do feel very passionate about this and I’m not sorry about it, but we’re all sick of being hounded in this way, then the public turning round and saying “what’s your problem”. If there’s anything you want to know about it, please ask me and I’ll try to answer it or I can point you in the direction of somewhere/group online that can do it.


  2. As I said in my post, I am aware totally of all the problems others have with claiming benefits. You have told me nothing that I didn’t already know but it isn’t my personal experience, as I did say. I have been on DLA for about 12 years so I know you don’t have to be not working to get it. I have only even made one application and it was accepted from the start that I was permanently disabled. I didn’t become unemployed until 3 years ago, but I didn’t ask to be written off, as I have said in several posts all I wanted was what used to be called “the dole” but they insisted that the only benefit open to me was what I believe is now called ‘Supported ESA’. Which is the standard rate with another small payment on top. I have only had to fill in one full form, then to sign and confirm there was no change they needed to know about, but I did tell then that I now have COPD as well. A couple of weeks latter a letter of confirmation of another 2 years came through. I am also aware of the interviews some people are called in to attended, but as I said I haven’t personally, even been spoken to over the phone. All I have ever done was fill in forms when asked to and they sorted it out for me from there. As I also explained I don’t have a husbands income to fall back on, I am still supporting him, almost every penny he has is paying off his debts, we live off, including paying our household bills and mortgage and full council tax, from my benefits and we seem to manage OK.

    I am not blinkered to the problems out there and made a point of saying this is my experience, nothing is black or white, but I can’t be the only one who hasn’t had the slightest problem with the system as it stands and I do have sympathy for those that do, but I am writing about my experiences, not those of other people, that is what my blog is, my life with disability and how I manage.


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