Fifteen on Friday (2): The Battle Within

About this time last year, I published a short blog post which still makes me smile, about the conflict I have between two different parts of me, the ‘awake’ part, and the ‘sleepy’ part. They often fight each other, leaving me in the middle, feeling dazed, exhausted, and in varying degrees of pain. This affects at least part of every day, if not whole days, maybe whole weeks, and at times, weeks at a time.

This fight has been responsible for many of the absences from writing this year, as even if I am just about awake my ability to think clearly, process information, or form what I want to write or speak is markedly slower and much more frustrating. Countless posts have been begun and lost this way, or even begun in my head before sleep takes over. When I wake, only fragments are left, if I remember what I wanted to write. It’s hard to even begin to explain my frustration or the effect these things have on my life or even all the ways it affects me. Medication, stress, current pain, spasms and disrupted sleep all play a part. A therapist once argued that I don’t have ‘fatigue’ as such, it is merely effects of underlying factors such as pain, and medication side effects coupled with the huge effort it takes me to do anything. I beg to differ, given the devastating effect it can have on my life; but I digress.

Though very rare, sometimes I win the battle. This week I managed to get to church, and stay for the buffet lunch, catching up with several friends I have not managed to communicate with for weeks. Monday was another much-loved hydrotherapy session, and Tuesday, Christmas eve, brought welcome rest. I did have plans, but by this time, pain from all the exertion had taken over and I could battle no longer, being put to bed, and asleep by 8pm. Wednesday, Christmas day, dawned bright, clear and sunny. This special day involved a lift to church and a trip to Social Enterprise, for Christmas dinner, presents and games. In part, I am there because I am on my own, but I am also there as a befriender and listener to those for whom Christmas day brings back untold painful memories and heartache. I had the privilege of listening to/ talking with several people. It is this kind of ‘work’ which makes me feel very alive, and causes me to feel ‘good’ tired, or tired for very good reasons, reasons of my choosing, and not for fatigue. I played Wii games too which I love. I can be competitive and have a fighting spirit in in the extreme; part of what allows me to accomplish anything I do manage, and helps me to persevere through the tired, painful times.

Thursday brought Brunch out with lovely friends, though by this time the fatigue was definately winning. Once home, I had several hour long naps and never really woke up, sleeping brokenly overnight in-between spasms and pain, and causing me to feel apprehensive about another day on the go. This time, to meet up with family for a meal. I loved it, though felt I was much quieter than I can often be. This isn’t necessarily a bad thing, but I resent it because anything I did try to say was an effort and not feeling that well spoilt it a little, though I enjoyed it inspite of everything. Once home, I spent some time with my family before they left early to try to beat the bad weather home. Since then I have drifted in and out of naps, falling into deep dreamless sleep for an hour at a time after supper too. I guess it is good in part as it has allowed me to write this… though frustrating, as I think of all the things outstanding which have been sat these weeks, writing included. In an attempt to focus on the positive things, once I finish writing, I will be very glad I managed it… though I hope for many more times in this coming year in which I, accompanied by Jesus, win this very frustrating of battles.

Care, employment and families – big week for disability

Trust the Government to squish debates on such big issues into the last week in the hopes not as many MP’s will attend / notice / care. As usual, as mentioned by Scope, the numbers of people now not qualifying for care, and therefore having little or no help to prevent a health or care crisis such as a hospitalisation, means the cost to taxpayer escalates despite attempts to save money. Typical Government too, to underestimate how much money good, ‘preventative’ social care costs.

Also, it has not been mentioned here that cuts to disability living allowance -500,000 less people are eligible or will lose out when assessed for it’s replacement. This matters, because the people not eligible for social care might have had the funds to pay for something, at least, but will now have no plan B, surely increasing demand on all fronts. Also, people eligible for social care could previously use their Disability Living Allowance to ‘top-up’ their care, though for many, once assessed for PIP, their benefit amount will be less, if eligible at all, and therefore a further gap in funding exists. The only funding which ‘tops up’ the gap a little is that after several attempts, the Government were unable to close the Independent Living Fund, used to pay for care for those people judged most severely disabled, after the decision was quashed by a last-ditch appeal attempt. However, as this money goes to a relatively small number of people, there is still a massive shortfall. Yet again, the Government has failed to understand how difficult, and complex life can be when you are sick and/or disabled, and just to be seen on a par with your peers requires significant mental and physical energy, and considerable extra costs (phoning ahead, transport, planning for toilet stops, meals, medication… heck, just getting up and dressed even with help, can be beyond me some days!! Those who are able to be on a par with ‘normal people’ in the workplace, in home-life, and comminity life can, and should be given this support — yes, perhaps at quite a big cost. However, to not plough money into it will cost something greater — physical and mental health of sick and/or disabled people will deteriorate costs health and social care systems more in the longterm, and especially where there is also increased pressure and stress from wrong benefit / tribunal decisions too, lives.

Scope's Blog

It may be the last week before Christmas, but politicians are making time between mince pies and mulled wine to look at a couple of important disability issues.

Today MPs have their first opportunity to debate the Government’s plans for reforming local care – including capping care costs for elderly and an end the postcode lottery in care.

Councils say the crisis in social care sits behind big health issues such as pressure on A&E and GPs – if older and disabled people don’t get preventative, community care, they risk becoming isolated and slipping into crisis.

The Care and Support Alliance – representing 75 charities – is today saying that the bill is a real achievement but risks being undermined by a funding black hole which has forced councils to restrict who gets support.

The CSA has published new research from the LSE that reveals that if we had the…

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(tell me why) I don’t like Mondays…

As it is Monday today, I have been acutely aware a blog post was due, having been asleep and unable to fuction for the majority of Saturday, and out for the majority of Sunday, I have had no chance to schedule a post ahead of time. Yesterday, I had to get the minibus to church with my little wheelchair as the big chair is awaiting a repair and was too unreliable to drive, and could have halted at any given minute. Having the little chair meant being able to go from home to minibus to church, to my friends car, and into their house, and vice versa later on. Hard work for me, but means I can still visit my friends houses occasionally, giving me a bit of a life, meaning I am not completely housebound. Of course, relying of this kind of assistance just to cross the threshold from my flat to the big bad outdoors means I am still housebound for the majority of the time. I did have a good day with my friends, who were not in the least bit bothered that I napped in my little chair for the best part of an hour between 5 and 6 pm. I am so thankful for that, as it meant I did not have to rush away as soon as I had eaten, but I could spend more time with them once I awoke. My friend’s daughter has learnt how to take my arm when i need to borrow her for a few steps, and also now knows how to fold my chair, I think this is fantastic because she has learned these things young, and can help others too. Useful in a church such as ours where the split between able-bodied and ill or disabled is a least 60-40, far higher than in society at large.

Fast forward a few hours, and I awoke exhausted from yesterdays exertion. I awoke when MainCarer pressed entry buzzer but fell asleep between letting him into my flat and him finishing sorting things in the other room. Bummer. I jumped awake when he came through, spazzing from head to toe. I struggled through strip wash and getting dressed, and managed most of my bacon sandwich, and my tablets. After a little rest, I think I dozed again, until I realised my stoma bag had split everywhere, barely an hour after main carer had left. I dithered, wondering briefly if I should attempt to change it before common sense prevailed. I decided the most sensible thing was to wait for the nurse or an assistant, whoever was due to do that morning’s treatment. Before long, I heard the entry buzzer being pressed again about 9am. Help had arrived, and by 9.30am, had left. Dressed in clean underwear and jogging bottoms, I slowly and painfully clicked my way through to the living room with my Zimmer frame to start my list of emails and calls, much like some of you would do this as part of your job.

It wasn’t long before I cried out to the Lord ot help and strengthen me, as I felt completely unable to function. Just at the right moment, I saw the following Spurgeon quote which ‘Flowing Faith’ posted on Facebook:

Let this one great, gracious, glorious fact lie in your spirit until it permeates all your thoughts and makes you rejoice even though you are without strength. Rejoice that the Lord Jesus has become your strength and your song – He has become your salvation.
~ Spurgeon

This became my morning’s heartfelt plea, and prayer. Two hours later, I am much more exhausted than before, with all 5 items on the list attempted, two voice mails left, one person having called back and another two still to do so, with two emails still to have answers to. I don’t feel as though the morning has been a success, as most of the list is still to be completed by others. My head is splitting and my heart heavy, and I feel slightly nauseous. I desperately need to sleep, but would likely sleep through and miss any calls, should they be returned while I nap.

In the middle of my business, and busy-ness, a friend text me to say they were on the way to a holiday in a sea-side town in the next region to the one in which I now live, with who else by my former ‘someone special’ as they felt I had a right to know. I cannot begin to describe my heartache, as we no longer speak; it being just too painful. They then proceeded to tell me they had wanted to visit while they were so near, but my ex refused. Expected but still very difficult to deal with, especially as ex had insisted next holiday would be abroad, and they could not come and see me, and were unlikely to be passing and see me that way… and then I find out they are visiting the next region. I hardly know how to feel, except I think this is adding to the nausea.

Doing my ‘jobs’ was only a partial distraction. The friend I who hosted me and others yesterday remarked recently said she understood why I consider my health to be job, partly because the phone calls and emails I do are also part of what she does at work, and partly because of how much time everything takes and the extra effort required due to my illness and disability. About 10.45 – 11 am, my temperature began to rise, and I started to sweat. I think this is from the effort of everything. Now I am sat, I have cooled a little, though I am still desperate to sleep.

The receptionist who answered my first call claimed to ‘understand’ that my chair is out of action, but was unable to process paperwork or make repair appointments any faster. This may well be the case, but please, please, do not claim to understand my situation. I am physically, mentally and emotionally spent and it is not yet lunchtime. I keep jolting awake every few minutes, and attempt to type a few more letters before I doze off again.

I have written this to try to help friends, family, and those who follow my posts to realise what life can be like for someone like me. Of course, the reality will be slightly different for each of us unable to work, but there will still be plenty similarities, like having very few spoons to begin with, the effort and time everything takes and the effort required to do it.

Small spoon
Small spoon (Photo credit: Wikipedia)

Main carer will arrive soon, meaning I can hopefully sleep while he does some jobs and waits for my phone to ring. I cannot wait!

The one with the wedding (2)

the picture shows two intertwined gold wedding bands
the picture shows two intertwined gold 
wedding bands
http://www.sxc.hu/photo/1326034

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)

Choice

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 […]

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baking, writing, and banana loaf!!

The daily prompt from the 17/08/10:

Scribble down the first ten words that come to mind.

baking, hoovering, cleaning, ironing. shopping, money, benefits, banana loaf, writing.

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!

The Welfare State: One system fits all?

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.