Tag: disability

friends, family and favourites

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oooh, this is awkward…

Today’s daily post is an awkward question to answer, as I don’t actually have a favourite person, if we’re talking ‘significant other’ as it were. I talked this over with a friend, and they say said, why didn’t I immediately say Jesus was my favourite person?  True enough, that’s what I should have said. As a Christian, I should  put Jesus first, before anyone or anything, my first love. Time I walk away is still harder than time with Him. I can answer the question a different way…

Jesus should be ‘my favourite’?

 

I know, looking back He’s enabled me to me walk through so many difficulties in the past few years. Things I’ve already written about, including failing my teaching degree, being ill and trying to pass a Master’s degree. Add to that, complicated major surgery, becoming a full-time wheelchair user, starting to need carers two-three times a day, and managing The Bag. There’s no way I’d still here without Him and I know He’s there for me every moment of every day, and in the happy moments too. In these times I’m reminded I am to rejoice in everything, and have joy even in the tough times. I’m still learning those things!

As I’ve written before, many of my friends are my favourite people, along with my parents. I still feel quite dependent on them, really. Odd, considering I live independently, and for the most part, have done since 2001,  That said, I owe everything to them, for lots of reasons, and often miss them. My Gran’s another favourite person as we’re quite close, and she’s a kind of mentor to me.

 

waiting

 

Maybe, just maybe

who else? Well… I haven’t met them yet, and they haven’t met me. That is. if there is someone, or if God has something else, something he considers better for me. These things aren’t easy to write. Traditionally, there’s a focus on family, in churches, and usually, Christians who hold similar views to me marry young. My parents try to encourage me with anecdotes of women they know who are older than me and still faithfully waiting for the person God has for them, and if they do not show up, they will not settle for less. Oh how I admire their discipline. I know I don’t want to compromise  but sometimes the temptation is great.

which is ‘better’; single or married?

 

According to some friends I’m good at being perceptive about people in their lives, but by my admission, sometimes hopeless with my own. I’m also aware, if I marry the wrong person, being with them, and coping with all my health problems would be hell. It feels like so much pressure sometimes, and a bit of a relief to stay single. Other times, I’d like the someone special… especially when I look at friends who have found ‘the one’ but at the same time, it hits me that I should keep waiting because it might be worth it eventually. I’m hyper-aware of the tendency to ‘over-share’… enough now.

ouch, that hurt!

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This post is in answer to the daily post from 28/12/12. I LOVE books. I have several on the go at once. A few months ago I saved up vouchers and put them together to buy a Kindle 4; this model is the last of the simple ones. I love it! It makes it so much easier to have several books on the go at once, and still know where I’m at with them all. I did used to read a lot of romances, but these days they don’t have enough bite for me. I love a good autobiography to really get lost in someone else’s story, to feel what they feel and ‘walk in their shoes’. 

Recently though, I’ve been downloading different kinds of books. I saw a daily devotional book on the psalms at my friends house which looked good, so I downloaded that along with C.H. Spurgeon’s thoughts on the Psalms. It is worth persevering with the language, because some of what he has to say is extremely pertinent, just right for today, and can often make me think. 

Apart from that, there are a few others which have really made me think recently. One of those I do not wish to mention here. Others I am reading in preparation for my next article for Bible Reflections. That just leaves one more book, by Jerusha Clark called “Every Thought Captive” which encourages women to think about their thought life. It’s an odd thing, thinking about what you are thinking about, but a necessary part of discipleship, as previously discussed here, in my previous article for Bible Reflections. I started the book when I started thinking about that particular post, but it was something on my mind that I felt I had to do. It’s something I really struggle with. Also, I think it’s appropriate at the end of the year to take a bit of an inventory of the year gone. I’m not sure if I agree with setting arbitrary goals for the year ahead. However, I feel if I do not examine where I have been, how do I know where I’m going, and how do I learn from many) mistakes?  I’m really just at the start of this journey of considering my thought life, but one of the author’s opening thoughts really struck me:

Often it’s easier to believe that we’re worthless and weak than it is to truly accept that in God we are incomparably valuable and girded with matchless strength.

I’m still wondering why that is. I think it is to do with how hard it is to change our way of thinking. It is easier to worth with how we have always been than to make the effort to change. This particular thought has swirled round in my mind for weeks. I’ve been unable to move on. This has stung me again and again. There’ll be more thoughts on this book in the coming months. If you are starting to think about what you think, I’d really recommend it.

 

Three doors, one nightmare?

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This Daily Prompt is the original inspiration for this post. It’s difficult for me to write, as I don’t normally remember my nightmares. I’m on such heavy medication that I have deep foggy sleep where I barely dream, nevermind have nightmares, so until recently, I didn’t know what they felt like. Anyway, here is my best shot…

The beginning…

There are three doors, all of equal width apart, and all the same shade of blue, which white numbers on the door. Which do I pick? I close my eyes, spin around, and stumble vaguely in the direction of the doors, entering the first one I find. Disabled people are begging in the streets, painfully thin and stinking. There is a person with a disability trying to go the wrong way through the Christmas Crowd. Pushing, pushing with all their might. I can see the effort they have to put in. They are pale, sweating and exhausted. I reach out to try to help, but they cannot see me. Yet I cannot take my eyes off their struggle. I wonder, where is their support worker, why such struggle on their own? People in the crowd tut and glare at the person, swearing under their breath at the persons stupidity in trying to fight the crowd. The do not see the person or their struggle, merely the incontinence. I stare, helpless to do anything.

Memory of struggle

Slowly, a memory comes back to me. I was that person fighting the crowds. Sweating and fighting to stay on my feet, determined to push on. I hear it, I cannot miss it. The person does not try to hide their contempt. They shout at me, swearing. Supposedly under their breath, but loud enough for me to hear. The memory is but that. Part of my nightmare… long enough ago not to remember the words, near enough to remember the swearing and the contempt. They, and the crowd, and the fight was the reason I finally gave in. I’d had enough. The next time I went to fight the crowds, I had a weapon. Not a very secret one, but a weapon. One capable of inflicting harm, nipping ankles and causing more trouble. I do not care, I am only relived that I do not have the same struggle, I have a new struggle but it is not the same nightmare as the old one.

Exploring my surroundings

The memory disappears as quickly as it came. I wonder, what else is there here? I do as the person with a disability I saw, and fight the crowds. They cannot see me, yet are aware of an inconvenience.  Irritation upon irritation. I find a shop, filed with food and good things. Freshly baked bread, warm from the oven. Cakes of all kinds, glistening icing, full of shiny fruit. Chocolate cake, dark and indulgent. Lovely fruit juice, something to quench my thirst. I feel in my pocket, searching for money. I find a few coins, not enough to buy anything. I find my wallet, go to a cash machine, reaching the buttons with difficulty. I check my balance. There is nothing. I wonder when I will have more, and with horror realize I have a few days of not eating, meaning a hospital visit for dehydration. My money for that month had gone. I wonder, how have I spent it? Perhaps on my mobile phone bill? My connection to people, to help, an antidote to the aching loneliness which sometimes haunted me. Or my food shop, supposed to be for food, but spent on washing powder, cleaning products. I could go on, but cannot bear it. I feel it afresh. Deep and Raw. So, what do I do? Join the other beggars, it’s them who shout the loudest, and yet no-one hears me, so no one gives me anything, I am invisible to them.

A Nightmare?

I wake up shivering and sweating, struggling for breath. The pain rises in my chest, breath is harder to find. Eventually the feeling passes, and I drift into a sleep which gives no rest, fighting and fighting till I lose the duvet. I am freezing, yet I do not wake. In the morning, I go to put on my trousers. I used to have help to this. I reach into the pocket, and find a few coins. This was no nightmare…

————————————————————–

At the moment, this is just the stuff of nightmares. And yet, the present reality is bad enough. See my previous post. Who knows what will happen when “Universal Credit” comes in?

 

Two stories, one theme: survival

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Dear Readers, if there should happen to be any of you left, once again I apologise for the lack of posts in recent weeks. For the moment, my need to sleep is greater than my need to write. Well, this is generally true. Fortunately, this morning at least, my need to write is greater than my need to sleep. This is somewhat concerning given I have an appointment at 9 am. (All attempts to request extra consideration within the unbending appointments system have gone unnoticed, so I continue to have to make my best superhero(ine) effort to make it anyway.

Maddalena

Talking of heroines, I’d like to draw your attention to the latest little fighter to make the headlines, a baby girl called Maddalena, born at 23 weeks weighing less than a pound. There are several things unusual about this mites story. Firstly,  that she was born at 23 weeks. This is significant given that threshold at which life is considered to be viable is 24 weeks, but this one was born at 23 wks and two days. When babies are this early and this small, every day counts, which is why being 5 days short of 24 weeks is worth reiterating. The second unusual thing about this story is that Maddalena ‘s story was introduced as a miracle of miracles, not only was she born at 23 weeks, and therefore considered ‘unviable’, but she was saved by a pair of scissors. At first this was puzzling, but it transpired, that a pair of scissors were found in the bag which contained the infants tiny body, so ‘experts’ thought she weighed more than she did. Apparently, according to the way this was reported, she owes her survival to this otherwise insignificant detail. Had the pair of scissors not been there, once again her life would not have been considered viable, as she would not have been considered able to survive and, more importantly, to support life, and a quality of life which would make the thousands spent on her medical care deemed to be a worthwhile expense. In these days of the NHS  having to justify every penny spent on patient care, (while wasting thousands of pounds in beurocracy!) this added weight is what gave her a chance at life, as presumably, doctors thought that if she was surviving at less than a pound, not including the weight of the scissors, she obviously is surviving for now, and is being given a chance.

Forgive me for bringing up the ‘religious’ thing once again, but in my opinion, no detail in this little ones life is insignificant, or unnoticed by her Heavenly Father, and her life was no accident, or mistake, whether her survival is considered viable or not. It is clear, at least to me, that God has a purpose for this little one, for it is He who is giving Maddalena her every breath, and He can use anything to thwart the expectations of the medical profession, even a pair of scissors. It seems for the moment, at least in what has been broadcast  that Maddalena does not have a disability as yet, unusual in one so small. However, as with all premature babies, her survival is still precarious, and due to her weight and how under-developed her immune system will be, her life could be wiped out by something as simple as a cold. For now, however, she survives. I intend to follow her progress.

Disabled people, discrimination, and the Paralympics

On the same day as this little child was born, there  are others fighting for their very survival. In a world where achievements such as the ability to find, and maintain a job, and indeed to be able to search for a job in the first place, and therefore not sponge off the state, is paramount, disabled people continue to fight. We are fighting for many different reasons. As in the case of Madelina, we are figthing to prove to prove our lives are ‘viable’ and have meaning and purpose, despite some in society, including, it seems, the majority of the goverment would seek to place on us.

As I suspected, the Paralympics have been judged to have had no lasting impact on the way ‘odinary’ disabled people living ordinary lives are viewed and treated by society at large. It seems the ‘Superhero’ label is all too relevant. Achieve heroic things, and you are considered an inspiration, and your life is considered worthwhile, for you are making a contribution to society by inspiring the rest of the nation to consider themselves lucky, amongst other things. It may be that view of disabled people in sport, and disabled people’s sport has changed, but as I suggested in a previous post some months ago, Lord Seb Coe was too quick to say attitudes towards disabled people had changed in any meaningful way. As is stated in the news item, According to this latest survey from Disability Charity ‘Scope’,

  • 53% said they still regularly experience discrimination
  • 67% said that the Paralympics have done nothing to improve the way they are spoken to

A high profile figure has come out in support of the survey, The Director of Public Prosecutions Keir Starmer QC has said in the article it is his “hope that [the Parlympics] has enhanced our understanding of people with disabilities, my fear is that the surveys continue to show a high level of abuse.”

While I applaud his courage in furthering the cause of little known “Disability Hate Crime” for some of us the fight is even more basic than this. Some of us are fighting for our survival  and the right to a basic income, food, heat, an (accessible) roof over our heads, for those who are able, meaningful work, to allow independent means of obtaining these things.

There are so many arguments it is difficult to keep track of them all. However, one of the arguments I have heard that shows a lack of basic understanding, (and an attitude that stinks to the Heavens) is that why should the taxpayer be funding disabled people to stay in their beds all day when others have to go out and work to obtain the same things others get for free. I have said from the beginning that in some ways I wish to distance myself from activism as we are only in part fighting for the same things. I do not wish to associate myself with much of the propaganda constantly churned out through social media, and consider the current fight regarding #ESA to be somewhat irrelevant considering that this will be dispensed with in a matter of months. For me, ‘Universal Credit’ is the more important fight, as there are rumours that the ‘premiums’ on which I depend will be wiped out. For now, this is but a rumour. Nothing is certain for now, although I fear the ‘devil (will be) in the detail’. For now, we survive, and fight on!

 

The Art of Compassion

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The Art of Compassion This is the link to my very first article for Bible Reflections,oh the excitement! I have written the article from my experience of being there for others in need, what God is teaching me through it, and what the Bible has to say about how to love people who are hurting.. This […]

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A beautiful way…

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I didn’t have any trouble thinking of a title for today’s daily post. It is something I have often heard talked about in interviews on TV; sometimes the presenters ask the interviewees what they’re favorite songs are, or which songs have inspired them, in the case of musical artists. Today’s challenge was to think of a song and use it as the title for a post.

To anyone who has met me, or read even a couple of my posts, I think it will be easy to understand why I picked this song. At the risk of making this post too ‘Jesus-i-fied’ it’s about being so full of joy and strength that personal circumstances become unimportant, priorities change, and the person has a Godly character. It makes me think of a few different Bible verses too, but particularly this one…

7 We now have this light shining in our hearts,[Jesus] but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. [because we couldn’t do it in our own strength]. 2 Corinthians 4: 7 

The other, shorter one which is a bit easier to understand is this:

So whether you eat or drink, or whatever you do, do it all for the glory of God. 1 Corinthians 1:31

Putting it in a simpler way, it’s like being able to not talk about personal things and just got on with living a full life. Its something I’m still aiming for…

“beautiful Way” by All Star United

Pat’s Petition…

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Hello everyone, just a quick post to say, if you haven’t already, PLEASE PLEASE PLEASE (with a cherry on top!) sign the following petition asking parliament to debate, and hopefully rethink one of the most damaging benefits changes; the abolition of Disability Living Allowance DLA.

Please sign petition http://bit.ly/vjspX6  and get #PatsPetition trending

I couldn’t begin to tell you all the extra costs I have because of my disability and medical condition and cannot do without this money, as is the same for thousands of others, who many not get the same money from the new benefit in the Spring, causing untold damage to our quality of life, with many more of us shut in.

You only have till 10 am! So so what are you waiting for??

 

Introduction to the realities of illness and disability…

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Blogging, but only just…

I’ve been wondering recently, how much of a readership I have left, given how sporadically I have been posting here. In an ideal world, I’d love to post every day, and started out with intentions to do so. Unfortunately, the realities of life barged their way in. I’m beginning to try to wrestle my life back, but it’s best to start from nowhere. If I don’t expect anything, I might just surprise myself! I’m sure everyone living with illness or disability, or both, in my case .will have a vastly different experience.  Let me try to explain why, and what some of this means for me.. This post also answered today’s daily prompt

The same name, different realities…

Certainly, both levels of illness and disability, or one or the other, can vary for some people from day to day, from week to week, and from person to person. Two people with the same’ disability or illness, and even something which manifests itself in similar ways, will still experience it differently. I know someone with cerebral palsy, who up until and including the time I knew them, by their own admission, had never experienced a day’s pain in their lives. I know people with cerebral palsy who have asked me what a spasm is. I also know people with cerebral palsy who can do far more than me before they hit the same level of tiredness, and who are not ‘ill’ beyond the standard colds and flu and whatever. However, I am thankful that I do not have some of the other traits of cerebral palsy, such as epilepsy, or a significant learning disability. The closest I come to a mild learning disability is that my level of spatial awareness is too poor for me to be able to read a map or to learn to drive. I live my life within a restricted geographical area and am happy within those boundaries. Cue panic if I even have to step outside those.

The medical part of the illness…

There are aspects of my disability I can ‘control’ by the way I manage it. Other things, however, have a life of their own, such as my ileostomy bag. I had a meeting yesterday to talk about the management f it, and it turns out I can only use one particular bag cause of requiring a ‘high output’ bag overnight… There are hundreds of styles of ileostomy bags and different pieces of kit, and it’s typical of me that my needs only half-suit one particular system. Those things are very definitely out with my control, and can become incredibly frustrating.

There are many other things out with my control such as what time I get up, and go to bed, how tired I am, how much pain I am in, the affect this may or may not have on my speech, my mood, and my quality of life. The more ‘needs’ you have, the more professionals, and agencies, and clinics you need to allow into your life to help you manage aspects of it. Often it is only about management, not cure. Each person often only sees their part of my care in isolation, so for example, there is a brand of painkiller than would help me manage the shortness of my gut, in a small way, but this has a horrendous affect on my fatigue, and does not manage my pain in the most effective way. There is a treatment I am having to manage other symptoms, but that again, is not a cure, and surgery not an option. Neither is surgery for a reversal of my ilestomy. So I have had to learn to accept these things.

There are some things I can accept, and indeed, even some tings I can ‘relax’ about. I am learning to ‘go with the flow’ even. For example, I am learning not to be a control freak over what food, and brands of food, is in the fridge, to mind the way the washing is put on the airer, or to mind the way my hair is dried. I am learning simply to feel relieved that I can often have these things done for me, thus saving energy I either don’t have, or energy I can use for other things. There is also of course, lots I am still learning, like finding things that can increase or decrease my levels of pain, however small those things are, such as ‘gentle’ (!) exercise at the gym, a nap, or full on sleep in the morning. I think for me, morning naps work better than afternoon ones! All of this said there is still much I wish I could do. Just getting through every day seems to take so much energy.

This was the week that…

So far this week, it’s been unusual in that I didn’t have a ‘sit’/PA-type time on Monday. Plenty of time for a blog post, and article, and a couple of other things? Wrong!

Carer C arrived in t flat right on time as usual, only to disappear just as quickly having been called away to another client who cannot get themselves out of bed. She helped me to sit up, and then left me in bed, with chronic back pain. Bless her, she returned as quickly as she could, did some of her duties and was about to get me washed when someone pressed the entry button on the intercom. Here was the nurse…! A few minutes later, the morning routine resumed. Having found something suspect about the stoma, I sat repeatedly calling my local surgery for an emergency doctor’s appointment, which, thankfully, I got. All of this done, there was the morning gone… indeed time slipped by until 2pm, by which time I’d had enough and phoned a friend. I did get a break in the afternoon as I went off to have afternoon tea with a friend. Now I thought, I could breathe a sigh of relief. My main key holder arrived later to help me put my newest medication in the U.F.O (noisy, spaceship shaped automatic medication dispenser connected to a call centre. Unfortunately, as my friend/key holder explained, the call centre is unhappy about how much medication I seem to miss. Cue upset from me, a long discussion, and trying to find yet more strategies to help me cope with another problem. Lovely of said key holder/friend to intervene though. Went to bed thoroughly exhausted, however, this was the kind of start to the week that impacts on the rest of it…

The rest of this week has just flown. Tuesday was a hospital appointment, plus a blood screening, and a sleep in my wheelchair in the afternoon, and evening. I knew Wednesday would be no different. Each of the first three days of this week have been ‘busy days for me. Almost more than I can cope with. Together, absolutely more than I can cope with. Just one of those days in a week can be enough for me! Wednesday was an early care call, after which I tried and failed to get some writing done before I went to my friend’s house for the fortnightly Women’s group. A quick lunch, and a meeting with a district nurse (DN) manager, the Community Stoma Nurse, my Joint Care Manager (the NHS version of a social worker), and  Carer C, with a lot of verbal input from me. If I was exhausted before, I had absolutely no energy now! A curry, a rest, and I trundled off to lead the prayer meeting, sounding surprisingly awake. However, all of this effort also involves what is called “Payback Fatigue”. I suffer a lot of this. The more I can pace my week, doing things at a slower, equal pace, and in an organised way, the better. However, this is something I am still learning to do, and is by no means the whole solution. By today then, I was floundering. I woke up with my stoma bag having burst, and went back to bed after Carer C helped me complete my morning routine. I woke only to see the nurse, and fell asleep again. Having woke up when Carer C arrived to do the sit/Pa time, we decided I had enough energy to go to the gym. Make no mistake, I am no fitness fanatic. I can manage a couple of machines, and a few specialist machines which help with gentle stretching of sore muscles. This was enough to send me off to sleep again. So frustrating. So much sleep, from so little activity!

So, what about the rest of the week?!

I wrote half this blog before sleep, and half afterwards. I fear that after reading this, I will have put most of my readership to sleep! I have written it to try to illustrate some of the frustrations and complications, as well as some of the lessons that come with living from long-term chronic illness and serious physical disability. I feel there is a lot of ignorance in general among the government, as well as the public as to the everyday realities of living with such things, to say nothing of the economic consequences. I hope to get some more constructive things accomplished in the next few days, but only time will tell…

Another “must” watch…

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One man, one disaease, one enormous challenge…

The following video is from   the BBC IPlayer. It is the hour-long episode of “The One Show from last night (Weds 17/10/12, 7pm). The first segment concentrates on a young man, called Alex Flynn. I think he’s 33, who has Parkinson’s Disease but it determined to bash the diagnosis to bits, for now to raise money and awareness. To do this, he took on an EPIC challenge in the USA. I don’t know what I would call his effort, as different words have different connotations. If you are interested in the language debate that surrounds disability and impairment, check out the post I wrote during the Paralympics, and the acticle I based my post on. . You may well find your own word to describe what Alex has achieved. When you find your own word to describe it, post it below, or in my Facebook group for the blog. ! It would be interesting to start a discussion. If just want to watch Alex undertaking his challenge, rather than the full programmer, it start at 2 minutes 50 seconds   and ends at 12 minutes .

‘Children in Need 2012’

p.s. You may be interested to know that The  Rickshaw Challenge in Aid of Children in Need is back! This year features a team of young people who range in age from 16 to 18. One young man is a ‘young carer’, another has Cerebral Palsy, and a young lady from Stirling in Central Scotland has a brain injury. If you’d like to find out more, this part of the programme starts at 43  minutes and ends at 46.20  minutes. You can watch “The One show by following the link at the beginning of this article.