A year on from the last wedding I attended, this past weekend, I went to another. This time, not of family, but of dear friends. I once looked into carers accompanying me to these things, but between their costs, my costs, and agency fees, it’s far too expensive. My Mum kindly steps in to assist me, and to do the driving, the easiest way of travelling, with all the stuff I need, even for one night. Arrangement was, I would pack my own bag the day before, so it was ready for Mum to put in the car. In my wisdom, I didn’t write a list of what I might need. I need so much, even for one night, the thought of writing a list was exhausting in itself, so I decided to ‘wing it’. This was largely successful, except I did leave one thing at home – my box of medications fondly known as ‘the UFO’. I was 30 minutes into the car journey before I realised this, meaning that we would be late for the wedding if we went back to collect it. I chose to soldier on.
My friends’ wedding was wonderful. The Church of England ‘civil’ part of the ceremony was conducted by a friendly, jovial vicar, who seemed genuinely fond of my friend. This wedding was different. The friend I now know better is a Christian, but my other friend, the one I knew originally, is a Messianic Jew. This meant that there was a wonderful mix of official ceremony, favourite hymns, combined with Jewish elements including a huppah, a canopy under which the ceremony was conducted; a glass being smashed underfoot by the groom, a chorus with a jewish tune, (sorry for the generalisation, unsure how else to describe it). At the end, the Aaronic Blessing (in Numbers 6) was read in both Hebrew and English. I’ve been to many weddings, and this one really stood out. Not just because of the elements recorded above, but also because this was a wedding which focused on their Saviour too; from hymn and reading choices, to the post ceremony message or sermon.
The teatime reception was fantastic too. Mum and I were seated next to a wonderful couple with whom we could easily converse, as we quickly discovered we had things in common, and both people were full of mischief and stories. The meal was one of Yorkshire portions – double helpings of meat, massive Yorkshire puddings, (made of batter, for anyone unfamiliar of them) at least three vegetables done different ways, and two lots of potatoes. The speeches were interesting and witty, at times sick-makingly romantic (from the groom, obviously) who had written parts of his speech in Hebrew (with translations into English) for his bride.
The evening disco had a great mix of songs, (great at the time, but now none of them spring to mind!!) Other friends arrived at the beginning of the evening too, which was lovely, though by this time it had already been a long day, and a massive effort to last that long. We left about 10 pm, which meant I was asleep from 11 pm. I was so exhausted I slept for 5 and a half hours continuously before my body woke me – my back having seized completely (which it does at home for less sleep) meaning without my electronically controlled hospital bed I needed a lot of help simply to sit up, shuffle to the edge of the bed, stand up, and get to the bathroom. Normally I would use the remote controls on the bed to sit, then effort-fully and painfully swing my legs and shuffle, transferring to my electric wheelchair which I use to get to the bathroom. It was during some of this that I prayed God would help me cope with the remainder of the weekend without medication, and with chronic pain, plus the emotional toll of being without ‘special someone’. A picture came to mind, of sitting in Abba’s lap, with his strong arms continuing to hold me tight. I kept this in mind all night.
(N.B. Scroll to almost the bottom of the webpage for a clickable link to page 2 of the post)
Apologies that there was no shiny new post awaiting your perusal this morning, or indeed last Wednesday or Friday… I have had a few very tired days, due to a sleepless night, and a measure of extra illness. Over the past few days several things have been bothering me, but there is one specific thing […]
Pick three of them as your blog title. Now write!!
My ‘ten words’ are my rather hotch-potch to-do list for Friday, just gone. Not being very together in recent days due to a medication increase, I have to be kind to myself and take things one day at a time, while sleeping lots and trying to handle whatever the day throws at me. It’s fitting that there was a ‘daily prompt’ to match my mood.
I love baking. It is a hobby that lifts my mood, however I am feeling, and there is something delicious to eat at the end of it. It also makes me feel ‘normal’, connects me to the side of the family who bakes, and uses leftovers! What’s not to love?!
On Friday, I made banana loaf, which I have made many times before. It is one of the foods on my ‘snack list’ from my dietician. I adapt it to have half wholemeal, half white flour in and use buttermilk to give it a unique taste. I do follow a recipe to make it though. Today I made soda bread and rock cakes with cranberries instead of raisins, and half a teaspoon of jam in the middle.
I was supposed to do lots of writing to do this weekend, as I think I explained in my previous post. Firstly this blog post, a competition entry for Tearfund’s magazine, a testimony piece, and a blog post for ‘Big Bible’. Instead, I did lots of sleeping. I wish I could say I felt better for it, but this morning, it took me a long time to wake up and every part of my body ached. Over the course of the day, it has eased a little, meaning I can get on with the writing, but I may just eat a couple of jammy buns to ease the rest of the aches and pains, and keep me on task!
Successive Governments have wrestled with the same challenges – How to provide money and support to those who need it, who are unable to work through no fault of their own and encourage those who can work, back to work. It sounds simple if you say it like that. This current Government seem to believe it is simple. I wholeheartedly believe they still think that the most vulnerable in our society are being looked after. There are horror stories emerging all the time, whether it be people losing their appeals, others who are under such unbearable stress from assessments or appeals that their bodies simply give up, or they are so desperate they take their own lives. You need only type ‘ATOS’ into google to see that this is the case. ATOS are the French IT company charged with deciding who is, and who is not capable of working. There are also numerous support groups on the web where those at any stage of the process can share their stories or support others. ‘ATOS miracles’ is one such Facebook group, so called because some who really cannot work are being found fit for work by ATOS, thereby a miracle has happened, or at least they’d have you believe that anyway…
Even among the numerous stories, there are some that really stand out. A teenager who has always had full entitlement to care of mobility benefits at the highest rate all through childhood, whose family now has to negotiate the adult system on their behalf, really cannot work, and will never be able to work, and yet, has to be re-assessed. On paper, it really doesn’t sound fair, to Jessica, her family or the system. A waste of their time, energy, and needless stress, and a waste of taxpayers money. Perhaps the family do not realise this yet, but reassessments will happen anyway under PIP (Personal Independence payment) every few years. This is the benefit that has replaced Disability Living Allowance, which used to compensate people for the numerous extra costs associated with disability. Believe me, being this disabled is expensive!! I used to have DLA indefinitely, in theory, for life, but this has now changed, and will be the same in this case. The theory goes that it is impossible to police the system if there is one rule for some and another rule for the rest, and yet there will be such a waste of money. In the case of Incapacity Benefit and Income Support and now Employment and Support Allowance (ESA) there used to be a solution, for the likes of Jessica, called the Youth Supplement, given to only the most disabled youngsters. However, this has now been axed, the latest loophole to seemingly go in order to streamline the system. Sounds fair, but was it? I have borrowed the explanation from my friend Sue Marsh, who despite chronic illness and acute, constant pain, campaigns tirelessly for change on behalf of sick and disabled people everywhere. You can read the rest of the post here.
It was called the “Youth Premium” It only related to children who were born so profoundly disabled that they would never work as adults. Forget your Work Capability Assessments and your Scroungers, these children would never take part in society like you or I. Many would never talk, self feed, walk, play, laugh, fall in love. But they could still lead independent lives. Because we were a society that believed they should have a right to if they chose to.The Youth Premium treated these children as though they had paid National Insurance. For a cost of just 11 million pounds, on becoming adults, these children were treated as though they had “contributed” through work and because of that, they were entitled to contributory benefits, they did not have to be means tested.Such a simple thing, but what did it mean in practise? What did it mean to the people behind the numbers? The lives being toyed with? It meant they were entitled to live independently if they chose to. They were entitled to benefits in their own name, not as a means tested part of their family. Often, such profoundly disabled children had considerable compensation to see them through lives damaged beyond recognition by accidents. This compensation was just that. Money for an expensive future of care, adaptations to homes, aids to independence. For a lifetime, this money would have to pay for support just to make their lives as manageable as society could achieve.No more. Any money would be part of the means test. They would have to run down reserves of cash or savings before the state would step in. Compensation is not income. Nor should it be. From the passing of the welfare bill, any security or savings put aside by families terrified what life would hold once parents or siblings had passed, would have to slowly seep away, leaving insecurity and hunger a shadow away before these few profoundly disabled neighbours and daughters and brothers could rely on any help or support from the state.
A bleak picture indeed. One only hopes the state is then in a position to step in. If it has to be a case of one assessment system fits all then surely it should be a case of one assessment for all support combined. Then if there has to be stress, it need only happen once. Now there are repeat assessments that doesn’t seem likely. Benefits Britain 1949 on Channel 4 tonight at 9 is looking at how we who are unable to work through illness or disability should be supported. Perhaps, finally, someone will come up with some answers.
English: NASA StarChild image of Stephen Hawking. (Photo credit: Wikipedia)
Last year a majority in the British Medical Association have come out in support of disabled people, declaring the Work Capability Assessment (WCA) unfit for purpose. Additionally, after many months and much campaigning by disabled people, ATOS Origin, The French IT company given the contract to oversee self assessments and carry out face-to-face assessments, have been forced by the Department for Work and Pensions to retrain their staff. This is even after previous insistence that everything was fine and ATOS would not be fined, despite appeals overturning the previous decision that the person concerned was fit enough to work costing £66 MILLION in 2012-13 alone!! A report published by a coalition of more than 90 Disabled People Organisations and Charities in 2012 produced a damning verdict as to the impact of assessments and cuts on disabled people. In particular:
Nearly 9 in 10 (87 per cent) welfare advisors said the constant re-assessments for benefits are damaging people’s health
9 in 10 (90 per cent) welfare advisors said that too many disabled people are slipping through the net and are left without adequate support by the welfare system.
Mencap have also raised concerns over whether there is enough understanding of the way learning difficulties affect people, and how this impacts on a person’s ability to work.
Despite all this, GP Philip Peverley has recently claimed that: “I had considered, at one point, putting, up a portrait of Professor Stephen Hawking in my consulting room with a caption that said, ‘This bloke is not on the sick’.” To those who are entirely unaffected by the benefit cuts, and have no reason to disbelieve the skewed headlines produced by some sections of the media, this kind of statement may well make sense, and is the kind of logic behind the Goverment’s portrayal of benefit claimants as ‘scroungers’. However, to think this, and indeed, to declare it publicly is to completely gloss over a whole host of issues which he may well know nothing about which prevent disabled people accessing work, and a host of medical issues which make work difficult, some of which I have described below, This is to say nothing of possible discrimination, access barriers including need for specialist equipment not covered by Access to Work Grant, difficulties getting to and from work, and lack of transport to get there, extra costs, pain, fatigue… the list goes on.
I admit there may be some truth in some of what he says including that some people well enough to work to everything to prove they are too ill to do so. If there weren’t there would be no need for reforms, however, the levels of fraud are not nearly as high as the Government would have you believe. However, according to the article, “A poll of 4,000 family doctors by the Department for Work and Pensions in May showed three quarters feel that – even when there is no medical need – they are obliged to issue sick notes to patients”. This may well be true, and it is not the first time I have heard a GP asking that they could opt out of assessing patients fitness for work. If not they, then who? GP’s position as ‘Gatekeepers’ to NHS services makes them ideally placed to have overview of the main issues affecting a patient and the clinics they see and services they receive. I have already established that ATOS are in no position to do this on GP’s behalf, despite Peverley’s claim that “ATOS nearly always gets it right”!! He has also failed to acknowledge that Hawking is able to to pay for costs associated with his disability in ways that the majority of disabled people can only dream of. Money means access to better care, better food, higher quality housing and a better quality of life in general. This will have a positive affect on his impairment, despite its severity. He is so intelligent he can work using his voice only and has all the support he needs, something very few disabled people can say. Journalist Sonia Poulton‘s response to this article was to post a tweet containing Peverely’s reg. number for the General Medical Council for anyone who wished to complain!!
The last time I worked was in 2004. I did the kind of office job referred to in the article. I did full time (8.30-5.00) work for 6 weeks to cover sick leave, in the summer holidays while I was a student. For two weeks, I walked to work while my parents were on holiday, or I got a lift from colleges if they passed me on the way to work. Otherwise, my Mum drove me there and back. I don’t remember if there were steps in front of the building or not. I do remember that there was a lift. This was in the days when I was still on my feet, without a walking aid, or a wheelchair, except I used a scooter in term time to negotiate university grounds. I was also on minimal medication, and no prescribed painkillers. This was the year before my diagnosis of Chron’s disease too. This is all significant, because by the afternoon, I would have severe shooting pains from my hips to tips of my toes, and often stomach cramps too. I would be so tired I would have uncontrollable giggles, and my speech would be slurred. How very professional. I struggled to concentrate to do meaningful work, and I made mistakes. I was never disciplined over it though. Clearly not capable of office work, despite this doctors claims.
What about if I were to attempt this work today? Well, before I got to work I would have to be up very early because it would take me a long time to get ready. If my carer phoned in sick, the office may not be able to cover it, as I am often the first name on the rota, and not every one can work that early. Even with care, I often have to go back to bed to sleep off the effects of a disturbed night, or the effort of getting up and organised. If I did not do this, I would be asleep at my desk. This is often the case even try to write blog posts, which is why there was no post on Wednesday this week.
What about getting to the office? I am unable to drive because the part of my brain responsible for spatial awareness is too damaged, and reaction times were so erratic in the simulator during my driving assessment the Occupational Therapist advised that I would need to use hand controls to be able to drive but that I lacked the necessary co-ordination. Getting the bus is also out of the question, as I do not have the strength to propel my annual wheelchair on my own, and my electric wheelchair is too big. Taxi it is then. However, most taxis are the wrong size or shape to fit my wheelchair, and those it will fit are in demand. Even if I can get one, there is often no space between my head and the roof off the car, causing me a head injury if it crashed. I have been in town before, and even though I have pre-booked a taxi to take me home, none will turn up. I would need a motability van, but as I can’t drive myself, I would need a PA to drive one for me, even though funding is being squeezed in every budget including Access to Work, and the list of things which can be funded is now minimal. Add in cuts to social care and the disappearance of the Independent Living Fund in 2015 and this is an impossibility. (To read about the impact of these cuts on another disabled person, click here to read an excellent piece for the Indy’s Comment is Free by Jess Thom).
Assuming I could get there, I would not consistently be able to do any work for so many reasons… My pain killing medication exhausts me, making my speech slurred, and even then it does not take away all of the pain, and I often squirm in my wheelchair due to back pain, and other pain I cannot write about in a public forum. Then you add in the times my ileostomy bag bursts (which I cannot change by myself, and the bladder spasms causing me to wet myself. Have I forgotten anything? The last time I filled in a WCA form there were at least 3 or four extra pages of close written small script explaining my disabilities and the effect these have on my day to day life, including all the equipment I need to help me. Still think I can work?
Of course, I would love to be able to work, but at the moment is something I can only dream of. One of the reasons for starting this blog was to give another purpose to my day. I have been surprised and delighted to the response from my first post for a few weeks, about childhood dreams. Before you lose the will to live, I shall go off and take my medication, as the dispenser fondly known as the UFO is making itself heard! Until next week…
‘Planting Seeds’ I’m pleased to be a part of Bible Reflections ‘Community of Christian Writers’. This is my latest post for them, about faith-sharing, and the ‘gift’ of evangelism. I would love to know what you think. Do you agree or disagree that evangelism is a ‘gift’? Do you feel comfortable sharing your faith with others? What […]
You make have noticed I haven’t posted anything fresh in about a month. There’s more than one reason for that. I have definitely lost some of my concentration recently. The heat certainly doesn’t help. It’s a vicious cycle. Struggling to concentrate means it’s hard to pull whatever it is out of my brain that I want to write. If I am struggling to write I get frustrated. It seems to be happening more and more often at the moment. Struggling to write brings stress, which bring migraines, of which I currently have one a week, at least. There are other stresses at the moment which also makes it difficult to write. I am going to be trying acupuncture soon to see if this helps control the migraines at least a little. If you’ve had acupuncture for these, I’d love to know whether it helped you or not.
If you would like to write for me, I’d love to hear from you. Read this if you’d like to know more about me first. You can write anything you like as long as it covers something health or disability related, a comment or opinion on a news story, related to Christian faith, or even anti-faith. Would welcome related subjects too. I am trying to come up with ideas to submit to other blogs to help me get my creativity flowing too, but am keen for contributions here to help fill in some of the gaps when I feel too unwell to write, and to help form new ideas for writing. If you’d like to write for me, let me know! Add a comment to this post or tweet me @jacksdavie.
I did mean to respond to yesterday’s daily prompt but needed some thinking time. I’ve not really thought of myself as a ‘niche’ blogger, as I often write about some of the same things as others, but offer something new on the subject. By answering so many ‘daily prompts’, I try to vary what I write as much as possible, though there are some subjects I write about more often than others. You need only look at the ‘tag cloud’ on the right to see what, but off the top of my head… disability, faith, and relationships are the topics I think of first.
There are, however, some things I just won’t touch. There are current debates in church, politics, and society that I don’t know enough about to write about them, either in head knowledge or experience, and there are others answering those already, such as the current controversy about the definition of marriage, aspects of theology, apart from what relates to my faith and also that which helps me make sense of my disability, and life in general. I can’t think of other specific subjects for now.
The other reason for not being too controversial or writing on some of the topics of the day, is I can’t start confrontation and got myself into ‘hot whatter’ recently, something I’ve already written about this week. It may seem weak, and the time may come when I feel I know enough about something to add to the debate. I think I have already written about the welfare state, and there is a petition floating about I agree very strongly with, which demonstrates just how hard the cuts are hitting others in a similar position to me, which other people will say there just isn’t the money for. Everyone has an opinion on the cuts. On the economics behind it, however, I am woefully ignorant I guess I have found one of my ‘never’ topics after all…
I posted the following on my Facebook page today as a ‘status’ but then decided what had been said merited further thought, so I decided to write something here. The following is what I wrote on Facebook.
While I was watching the Andrew Marr show today, I heard panelists talking about £1bn being lost in tax avoidance because companies are now conducting are their affairs through Ireland. Meera Syal then said “I can’t believe nobody’s doing anything about it, given that I know at least 3 or 4 ppl who are literally on the breadline because their disability benefits have been cut.” When you put it like that, it shows just how inconsistent the Government is being, especially when you consider that ‘Dave’ talked about ‘Compassionate Conservatism’ at the last party conference. Where is your compassion now, David Cameron?
I listened to this part of the programme a couple of times to type exactly what Syal said. Listening to the rest of the discussion, I quickly became disgusted as her fellow panelist seemed to casually dismiss what she said. Only Nick Robinson (standing in for Andrew Marr) attempted to discuss what Syal said, he too brushing it off by saying that at least politicians were ‘starting to’ realise what was going on, and talk about how to sort it. Sorry, but they could talk about it forever more but that doesn’t mean the problem will be solved. The other panelist then talked about how the companies would say this sort of inconsistency was down to the Government and the law-makers, and is about getting the balance between bringing in money from taxes and lowering corporation tax so that these companies could work from this country, but without addressing the inequality which Syal had tried to bring their attention to. Syal then said this situation was ‘immoral’. However, Robinson was keen to move on, asking the other Panelist to begin discussing the next story of interest. A little later in the program Robinson interviewed Theresa May, largely concerned with the fallout from the shooting of the soldier in Woolwich. May claimed Cameron ”has a grip on the terror laws, reducing the deficit, and a grip on reform of the welfare state” I beg to differ. as I did at the back-end of last year, both with Cameron’s approach to reform/cuts and the motives, or e-motives, behind his, and his party’s actions.
Perhaps Robinson would say there was no room to discuss Syal’s concerns; it was not in the script/autocue. However, they have plenty of time to talk about the same story over and over. Perhaps they would say it was ‘in the public interest’ to discuss this story. However, the discussion that there was surely shows the blatant lack of thought for the poor of this country. There is no escaping it when the truth is highlighted so baldly.
We ignore those on benefits and the ‘working poor’ at our peril… time will tell just what the consequences of this inaction will be. How much more can people be squeezed? Apparently the delivery of Universal Credit on the deadline is in doubt, hurrah!! Watch this space in the coming months for more comment!
p.s. if you are from outside the UK, what is the Government’s attitude towards poor and/or disabled people? What help do you/they get if any? Do you agree with how you/they are treated? What, if anything, would you do differently? If you are from the UK, what do you think?
I’m aware I’ve done the absence – post – absence – post thing a few times now. I am sorry about it. It’s either been illness or just not having the energy or headspace to write. it had slipped down the priority list somewhat as i might have said before. As of yesterday though, I am determined to begin again.
I did truly want to begin (again) on Thursday, but I was simply exhausted. You see, I woke up achy and sore that morning, more than I had for the past few. I knew I simply had to go though, no backing out, just grit my teeth and get on. And so I arrived at my destination slightly later than expected, more tired than I wanted to be, helper in tow. I handed over the form, which thankfully, this time the doctor had signed the right place, but it was close!! I watched her check the form as i chatted to a physio, and introduced her to my helper. Form complete it was time for the tour. The pool looked lovely, shimmering with heat though. After a short search, one of the physios found us a free room to change in, and off I went. Tracking Hoist next, in my day of firsts. Once in the pool, a cushiony pillow behind my head, I lifted my body so the sling could be detached and the float attached. To my horror, I was being given ‘quite a bit of support’ from both physios. At that point my mind flitted to the past, the monotonous lengths and the medals. After a short time floating, I was helped to stand, supporting myself in the corner of the pool, one arm on each side. The exercises continued at a acceptable pace, while my mind railed against the simplicity of the moves, things that were once manageable were now embarrassingly effortful. One by one, each one I could manage added to the draft of the ‘exercise plan’.
Eventually, the physio I knew best suggested I swim, so I began to float on my back. Well, I mean I hoped to float on my back, but began sinking fast in the middle, as I had when I last attempted to swim. One of the physios came alongside and explained that she would have to support me while they consulted between themselves how much support I needed. Very quickly, they decided on a ‘noodle’, which the supporting physio quickly added, while asking me to try again, while never leaving my side, and helping me spin round before I hit steps, or the side of the sitting hoist. We finished with a few ‘warm down exercises’ before ‘chucking out time’. Each person or group of people is only allowed 20 minutes in the hydrotherapy pool due to the temperature/heat the pool must be. ‘Them’s the rules’ as it were. My attempt at using the chair hoist to exit the pool was rather more successful than anyone expected. Someone (I forget who) made the hoist the same height as the shower chair and I simply slid my bottom from one to the other – result!!
Once finally showered and dressed, we opted to visit the cafe before the taxi home. I chose A mug of tea and a ‘lighter breakfast later’ which my helper and even the physio said I had earned.(FYI: this consists of one sausage, a rasher of a bacon, a friend egg, a tomato, some mushrooms and a tomato in place of beans). I decided there and then to make it my main meal, as calorie wise it seemed the most sensible thing to do.
Once in the taxi, it was not long before sleep beckoned.’ Sliding out of the taxi, my helper told me I was ‘asleep on my feet’, Making an effort, I got to my door in my little chair without falling asleep. The helper made up some dioralyte and a coffee, and went on her way, which incidentally I didn’t drink. I slept sat up in my chair for three hours solid. After this I cooked and ate some pasta before falling asleep again, waking only to the sounds of the buzzer when the carers arrived Having slept so long I decided to say up for a bit. Predictably I fell asleep in my chair, waking when the phone rang. Call finished sometime later I crawled into bed and slept more or less solidly all night, waking exhaustedly. So far so normal for someone who gets next to no exercise.
Though by now, I’ve had a days grace, I am still exhausted. I fell asleep as I wrote this. I am determined to finish this in good time and attack my to do list after lunch, so I get a good rest tonight and hopefully avoid falling asleep in church tomorrow!! I am already thinking about what to write and auto-publish for tomorrow, so watch this space!
Hydrotherapy is a form of physio/physical therapy exercise done in a small pool, heated to a correct temperature. The heat is good for muscle pain/spasm/joint pain, and so on. The water aids bouncy allowing the likes of me to exercise in a way I couldn’t on land. It is the least restricting form of exercise and can make a big difference for some individuals. My exercise program includes side-stepping, walking, attempts at pelvic swivels to build some kind of ‘core’ from the natural resistance of the water.
sat n' all that 