In recent weeks, I….

Hi everyone, here I go with my latest attempt to kickstart my blog after some months of absence. Finally, finally, I feel ready to start writing regularl
y again. Hopefully, I’ll manage to post three times a week. For now, lets revisit the last few weeks in my world! In the past few weeks, I:

Have been concentrating on all the basics.

For me, this has meant more than just getting to the end of each day in one piece. Just getting from one hour to the next has often been a challenge, either because of a much disrupted sleep the previous night from insomnia, pain, (be it joint, stomach, or back) or due to my my highly functioning stoma, meaning I am up to empty it several times a night, despite using an appliance with one of the largest available.

If I settle down for a nap the following morning after a bad night, one hour, even two is never enough. And yet, keeping going is not an option either, as I am extra uncoordinated, clumsier, and even less able to think straight than usual. The problem is, after such a long nap, I have no inclination to write.
Additionally, i’ve had never-ending lists of admin, be it phone calls, emails to write, forms to fill… Unfortunately, these things have not been the only difficulties.

Have been confined to one room, for the most part.

After all that busyness, I am exhausted. This has been exacerbated, at least for the last six weeks, because of the unreliability of my electric wheelchair, meaning that even sitting still is hard work, as I need the support which I have from the pressure cushions on my chair, to enable me to sit up comfortably with less effort, less pain, improved balance and posture, and without putting undue stress on my back, which is already incredibly sore most days. Even when my wheelchair has been returned after being away for repair, I’ve been lucky to get the use of it for a full 24 hours without it stalling. As it is, it has stopped altogether, and is awaiting collection for the the fourth time in six weeks. How do I manage without such vital machinery? The truth is, I don’t! For the vast majority of this time, I’ve been confined to one room, usually my bedroom, as I have a profiling bed. This means I can press some buttons to adjust the mattress (in this case, a high-pressure one) to more effectively support my posture, and change my position when I am uncomfortable or in pain, without actually having to move my body. I am incredibly grateful to have access to such equipment, as without this I would be in constant unrelenting agony.
image

Fortunately for me, I have occasionally been able to leave the house in my (ill-fitting, too small and unsupportive) manual wheelchair if a carer, family member or friend has time to help me. This has mainly been for hospital appointments or the food shop. I’ve been unable to attend church in this time, as spending long periods of time in this manual wheelchair has done, and would do much more harm than good. While I am awaiting a permanent fix or replacement for my electric wheelchair, the confinement continues.

Have begun a tailor-made eating plan!

What am I doing with my time now I’m even more restricted than usual? In part, I’ve used the
time to plan food shopping, cooking and eating meticulously. In partnership with my dietician, I am eating much more lean protein to help fill me up without added bulk (or calories) in smaller, more regular meals and snacks. Due to my unique circumstances we’ve had to devise inventive ways of including all necessary vitamins and minerals in my diet, without me having to prepare, cook, eat and attempt to digest lots of fruit and vegetables, for me to struggle to absorb the nutrition anyway due to the shortness of the piece of gut I have left, and reduce the risk of blockages in the stoma, or over-filling of my ostomy bag. What a challenge! (Apologies if you were eating while reading this!) With help from care staff, also I’ve been using a reasonably comprehensive soluble vitamin and mineral tablet on a daily basis, to boost anything I am managing to absorb. As recently as the last few days, on advice from a GI consultant, I’ve recommenced a fluid restriction in combination with a litre of dioralyte daily (rehydration salts and electrolytes). All of this, though effortful is giving me more energy, helping me lose weight by reducing the temptation to snack or comfort eat, and generally feel better about myself. The results are also evident in regular blood tests. A long hard slog rather than a quick fix, but will all hopefully eventually be worth it.

4. The once gaping wound in my abdomen is no more!

Said wound has finally healed, though it needed loads of TLC and took an arduous five months to heal, some 3 months less than my fantastic surgical team expected. My surgeon himself, had some doubt that the wound would ever heal completely, but at a joint medical/surgical appointment last week, it was lovely to be able to tell in person that it had. The doctor said I made the surgeons day. I’ll bet they were glad to have good news for a change, especially given my prognosis and the miracle that I am here at all. As a Christian, I believe that ultimately God has orchestrated this healing, though other factors have undoubtedly helped including keeping the wound free other than the pre-existing infection on the outside of the wound, keeping it clean, and mostly dry, even while washing my hair, no mean feat in itself!

What else have I missed?

I have spent time doing the things I love again: cooking, baking, reading everything from ebooks on my kindle app on my smartphone, blog posts, news articles, catching up with friends family over occasional coffee or meals at home, or even more occasional meals or coffees out when accompanied. I’ve participated in church services online through skype and facebook, and even led my first one last Sunday. A separate blog post on that is to come. In the meantime, contact Dave Roberts to find out how to get involved in VOWchurch if you would live to, or even if you would just like to find out more.
Also on Facebook, I’ve joined a campaign called “Get Your Belly Out”, begun by four amazing yet ordinary girls seeking to raise awareness of Inflammatory Bowel Disease (IBD), raising money for a cure, and building up a loyal, friendly, support community in the process.
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Lastly, I’ve participated in a webinar (a seminar on the web) or how to write memoir, tips and tricks to use, and what to avoid! This was organised by Writer’s Digest, and run by an agent in America on a weekday lunchtime, broadcast all around the world to aspiring writers in various time zones, 6 pm in the evening, in my case! I managed to stay awake (hurrah!) content rating for virtually the full 90 minute seminar, having learned lotads. I’m now working on the 1500 words to email to the agent, due in a mere 9 days (eeek). On that note, I must scarper!

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.

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 […]

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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!

What about my future?

Tuesday’s daily prompt was one of the easiest I’ve ever answered. It was as follows:

Write a six-word story about what you think the future holds for you, and then expand on it in a post:

Only God knows what future holds

I find this an enormous comfort. I don’t have to strive anymore, because God’s got it sorted. I have no idea what the future holds, but He does… and he know’s what’s best.

That’s the simple truth. If I were to have a childlike faith, as I should, I should accept this and live by it without wavering. However, I am not as faithful to my father God as he is to me…! This is something I am learning over time, as I make mistakes, or try to have things my way. Were I completely disability and illness free, maybe I would have a husband and children of my own by now… or maybe not! Only God knows things like that, or whether I will ever be stable enough, and have enough support to have a job, and a career, or a husband! I am learning to develop a heart of gratitude for the many, many things I do have, from food, running water, flushing toilet and a roof over my head, a little money in the bank and money in my purse. This makes me in the richest percentage of people in the world. I think sometimes the disability lobby forget these things, though who knows what will continue to unfold with the welfare ‘reforms’. Things may well be completely different in a couple of years… or maybe not. I guess this is part of the reason it is important to trust God for the future. However, it is just as important to trust Him in the present, as I am to live for God now.

My life now also has consequences for the future; my eternal future. On Monday, I published a post about Invisible Illness Awareness week, and the scripture I quoted as helping me through the tough times is also relevant here:

Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. 4 And when Christ, who is your life, is revealed to the whole world, you will share in all his glory. (Col. 3: 1-4)

Scriptures like this help me keep going through the tough times. I have to admit, I am not superhuman, there are days I struggle so much with physical, emotional or spiritual pain. I am finding things tough at the moment but it helps to know that this isn’t the end though. What I do now will have a bearing on then. Just recently, the last 6 months or so at least, I didn’t see things as clearly as I do now. When things are bad I try to think of others more disabled than me or who have a particular need and pray for them, or to read a devotional by Joni Earekson Tada or a Psalm from my bible. It may be a song, or a prayer on Christian radio. It’s what Tanya Marlow called ‘the truth that comes in sideways’. (I highly recommend her post, which you can read here) I’m off to find some of that now to help me get back to sleep. I got a few hours rest before midnight but have been awake for at least 3 hours now!

p.s. I can’t remember where I read or heard this, but someone once said life is like a tapestry. We see only the picture on the front, but behind the scenes, at the back of the tapestry is the One who holds all the threads and can see the to bigger picture. One day, I will see the bigger picture too, but for now, I have to live in the present.

 

Invisible Illness Awareness Week 2013

Hi guys! The last time I posted was the 2nd of this month, and today is now the 9th. Put it like that, it doesn’t sound so much of a gap. However, before and after that post, I have been feeling unwell. It was an odd combination of stomach cramp, which I already take medicine for,  and a bad cough that my GP gave me antibiotics for as a precaution, as the cough had lingered for weeks. Thankfully, the antibiotics have made a difference, and the stomach cramp has subsided. I am still very tired, and in a vicious cycle of lots of sleep to no sleep, (or very little) and then too much sleep again. I know from experience this will sort itself out to an extent, but I am usually shattered anyway. Much of what I go through, the carers see quite a bit of it, especially the main carer. My family knows a lot, but doesn’t generally see me day to day. Some close friends know a lot, others nothing.

The only One who knows everything, is of course, Almighty God. I was reminded of this very truth this week as I was reading Day Two of Stacy Williams 21 Days to Finding Purpose in Pain, which I won a copy of after explaining some of my experiences with chronic pain underneath a guest post on pain written by Stacy herself on my friend Wendy’s website, ilovedevotionals.com. One of the verses for that day was from Genesis 16:13:

“She gave this name to the Lord who spoke to her: ‘You are the God who sees me,’ for she said, ‘I have now seen the One who sees me.’” Genesis 16:13

I got such comfort from the thought that God sees me and knows absolutely everything I am going through. That same day I read a devotional from Joni Earekson Tada talking about how parts of the Bible, especially Leviticus concentrates on the details of how to honour God, live out their faith, and keep their homes, and food hygienic and safe as possible. All the littler things, and yet God was in it all, as he is in all the smaller details of my life too. He sees the pain; physical, emotional and spiritual. He sees the day to day struggles, and also the small triumphs. For all these things, I am extremely thankful.

It was thanks to reading ‘Chronic Rants’ post on Invisible Illness Week that I first knew about it. I read her excellent post on 30 things to know about her illness, and decided to answer them myself. Parts of my illness are physical obviously, such as Cerebral Palsy (CP) and I use an electric wheelchair to get around. If you would like to know more about CP, I wrote a post for America’s National CP Awareness Week earlier this year, which you can read here. So, Invisible Illness. Why do I feel so compelled to write about something so private? Well. if you don’t know, you can’t understand, and it makes it harder for you to be there for other who have hidden things wrong with their bodies too.

30 things about my invisible illness you may not know (to have a go, the link is here)

1. The illness I live with is: Chron’s Disease, bowel resection, and chronic nerve, muscle and joint pain from walking and being semi-active for years. Oh added to that, constant fatigue from medication, sleep problems and so on. I already had Cerebral Palsy, from birth.
2. I was diagnosed with it in the year: 2005, last major op was 2008, and pain has become chronic in the last few years, steadily increasing year on year
3. But I had symptoms since: 2002 (I was 19), though lived with first, most major bowel resection since I was a few months old.
4. The biggest adjustment I’ve had to make is: There are two actually; being a full time electric wheelchair user, and the consequences of that, and secondly having carers in my home two to three times a day to help me.
5. Most people assume: my Cerebral Palsy is my biggest problem.
6. The hardest part about mornings are: how long it can take to wake up. I feel so ill too, never feel rested, and often have a headache and am in pain, especially back pain.
7. My favorite medical TV show is: 24 hours in A and E.
8. A gadget I couldn’t live without is: not really a gadget, but couldn’t live without appliance on my stomach… and my wheelchair.
9. The hardest part about nights are: not sleeping, or waking up in the night in pain
10. Each day I take __ pills & vitamins. (No comments, please) about 10 morning, 4 or 5 both afternoon and teatime and about 8 at night, plus multi vitamin.

11. Regarding alternative treatments I: think sometimes they are useful. Massage can really help, as has acupuncture, though in the case of both treatments I need someone who knows what they are doing so as not to cos me further harm or pain.

12. If I had to choose between an invisible illness or visible I would choose: I already have both.
13. Regarding working and career: I desperately wish I had both. What career? My job is my health.
14. People would be surprised to know: I once crossed London on my own when I really, really wanted to visit a charity I care deeply about.
15. The hardest thing to accept about my new reality has been: how limited my life is.
16. Something I never thought I could do with my illness that I did was: see number 14.
17. The commercials about my illness: there are no commercials about them – but adverts for painkillers annoy me – if only it was that simple. I take at least 3 different pain killers and still live in chronic pain, constantly.
18. Something I really miss doing since I was diagnosed is: well, have always been ‘disabled’ but miss being able to walk around, however wonky that looked.
19. It was really hard to have to give up: walking
20. A new hobby I have taken up since my diagnosis is: card making, and baking.
21. If I could have one day of feeling normal again I would: Ooh, I’ve never had a ‘normal’ day. I would travel to see someone I still care deeply about.
22. My illness has taught me: to begin to learn how to ‘be still’.
23. Want to know a secret? One thing people say that gets under my skin is: “what do you do all day”.
24. But I love it when people: come sit with me
25. My favorite motto, scripture, quote that gets me through tough times is:

 Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. 4 And when Christ, who is your life, is revealed to the whole world, you will share in all his glory. (Col. 3: 1-4)

26. When someone is diagnosed I’d like to tell them: Life doesn’t end, especially if you ‘only’ have a bag, you can life a normal life, As far as living with pain and fatigue goes, you can still have a life, it’s just a different kind of life.

27. Something that has surprised me about living with an illness is: how priceless ‘good’ care is.
28. The nicest thing someone did for me when I wasn’t feeling well was: brought me dinner, cooked it, AND washed up!!
29. I’m involved with Invisible Illness Week because: that’s just it, illnesses are invisible and people need to be made aware how life altering an invisible illness can be. A lot of what I suffer, I suffer in silence, alone.
30. The fact that you read this list makes me feel: that you care.

 

One of my many skills…

Only writing three times a week now means I have my pick of the ‘daily prompts’. This one is from the 18th, and it goes like this:

What have you been putting off doing? Why?

English: an animated clock
English: an animated clock (Photo credit: Wikipedia)

There are all sorts of things I put off doing, and all sorts of reasons for it. On my ‘good’ days I get a few things done, and I have resolved to also do a couple of things on those days which I may have put off. On bad days however, my “shoulda, woulda, coulda” list just gets longer. Things that I think I can put off I do. The trouble is, not being an organised person there is no logical reason things end up on that list, even things that should only take a short time to do. Even on the good days, I never know when I will need a nap. At the moment this is a ‘good’ day, or at least a good morning. I will be exhausted by the afternoon. If I only prioritised things that really needed doing I might be more organised, but I would never get anything done that was just for me. Other days, like yesterday, I fully intended having a writing day, as horse-riding was cancelled. However, I craved company, and sat watching day-time television for several long hours.

This morning, I finally attempted a short story, which I had put off doing, as I genuinely didn’t think my efforts would be any good. The last one I wrote was more than ten years ago in my first year at university. I have other writing projects to attempt. The magazine Tear Times is running a writing competition, and their editor Peter Shaw tweeted me to let me know, and ask if I had seen it, and if I would think about entering. I was very daunted to even begin, and I at this point I have only written a very rough first draft, having forced myself to write something very late one night, having taken several days to think about the brief. I am worrying my entry will not be up to the standard of the others! This is something that plagues me and one of the reasons I put off starting a blog for so long. However, some lovely people have said some lovely things about my writing, so I am beginning to have a little more confidence with it.

I also have a 500-word testimony to write for Christian disability charity Through the Roof which I have put off as the deadline is after the one for ‘Tear Times’. I have a head start on it as I previously wrote a testimony of the same length for Christian Radio Station UCB, which was read out by Mike Rimmer as part of a section called ‘My Story’.

The big project I have really been putting off doing, however is this: For several years, various friends have suggested I write a book. The very idea terrified me. Who would want to read it? Now I have written a blog on and off for a year, and a had a not very subtle push from specific friends, I am beginning to think about it. However, old habits die-hard. I am still tempted to shrink into the background again. Even short blog posts are such an effort most days. However, others who have recently submitted first drafts, or who are currently writing them, have inspired me too. I have yet to decide what style of book it will be. This I do know; that I will write about what I know… and my faith in Jesus will also play a part. Without measures of healing throughout my life, I would not be here. I am on roughly my 7th or 8th chance at life.

While at university, particularly the first time round, my ability to procrastinate was well-known. I was the Queen of Procrastination. To my shame, I admit I submitted some essays late which horrifies me now.A friend once bought me a ‘little book of procrastination!  Were I to start over, I would want to do things completely differently. I would always start each year, or even each semester with that intention, and every semester I would fail spectacularly. Ill health had a part to play in this, as this was round the time hospital admissions began. I was also starting to struggle with my mobility and be in more pain, and it was three years before I sought help from a learning assistant for things like typing, accessing the library and so on. I didn’t think my disability was ‘bad enough’. I did not want to admit to myself how much I was struggling. However, I began to have panic attacks. Eventually I gave in and accepted some help, however, it did not really help with my lack of organisation. Even during my Masters degree I had all the same struggles, despite best intentions to the contrary. Ill health also had a part to play as I got poisoning which put me in isolation in hospital, and exhausted me for months.

However, none of this ever sat easily with me. I read a bible study about procrastination very recently which said Christians have no excuse for putting things off. Even though I know this, it still has a hold over me. Whenever I do manage to complete a ‘To-Do list, or even the majority of one, I do feel a sense of achievement. Failures from the past still haunt me. I think “I managed so and so, but I didn’t manage this, that or the other…”. I have started to use the ‘schedule’ feature on WordPress, so I can write posts one day, but they are not available to you until a couple of days after that.

I hope one day, to  conquer this bad habit of mine, with Jesus help. Until then, however, i will still have my “shoulda woulda, coulda” list. As for when you can expect the book, your guess is as good as mine. You do have my word I will start on the book soon, though just remembered a monthly writing commitment…! Will I ever beat procrastination?!

The welfare state: If Hawking can work…

English: NASA StarChild image of Stephen Hawking.
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…